Yesterdaay, with my heart in my mouth and my stomach in knots, I called my oncologist's office to see if they had the results of my CA 125 screen. (CA 125 is a marker in the blood for ovarian cancer; my CA 27.29 is a breast cancer marker, which has been in the normal range since my surgery, but I hadn't had a CA 125 done.) My gyn-onc was concerned that I hadn't had one done, and needed me to do it before surgery. With the "10-17%" in my head, the whole thing made me very nervous.
Well, good news. The range of normal is up to 39, and I'm a 9. Perfect! The test is certainly not 100% accurate in predicting ovarian cancers (some doctors don't even look at these markers because of their fallibility) but it's still a relief to pass this checkpoint with flying colors.
All of my other bloodwork (red and white cell counts, etc.) is in the normal range, but in looking at the trend, my numbers have been falling for over a month, and were at a low last week. This is not surprising given the radiation I've had, and I feel more tired now than I did a couple of weeks ago, so it all adds up. Often, radiation fatigue kicks in when radiation ends, and that is certainly the case with me. It's nothing I need to worry about, but it's certainly something that drags me down. It's no fun to wake up after 10 hours of sleep and feel exhausted!
I must say...the thing that's really driving me right now is about weight loss/getting fit. I want to sleep in my size 8's because it makes me so happy that they fit me...now isn't that silly? It just feel so good to have hit this milestone. I keep sneaking peeks in the full length mirror at our house to assure myself that really, it's true, and that I have lost so much weight. Certainly, there's more weight to follow, but I am enjoying the journey so much more from this weight than any other I've had in the past several years.
I will add, though, that's it's gotten a bit more difficult to stay on track. At my new weight, I only get 20 points a day (plus the 35 weekly flex points) and I feel hungry a lot more often. I've come to realize that I must give up my mochas - it is both healthier and more filling to have a latte (the milk gives me needed calcium, and the coffee doesn't have any extra points) and an apple, instead of my beloved mocha. This is slightly boring, to say the least, but well worth it!
Love,
K
Saturday, March 11, 2006
Wednesday, March 08, 2006
Surgery info
Today I chose my new plastic surgeon, Dr. Miles. She is actually a breast cancer patient herself: after years of doing breast reconstructions, she found herself with breast cancer. She's in the reconstruction phase, so she is certainly someone who can relate to me and vice versa, but I chose her because she has the perfect blend of expertise, knowledge, flexibility, and bedside manner. She was referred to me by Dr. Dawson, for whom I have the utmost respect, and that helps, too.
I will do my gynecological surgery on the 30th of this month, and then hope to do the prophylactic mastectomy and reconstruction at the end of April (I will receive the date later this week).
For recon, I have chosen to do a lat flap (using the latimus dorsi muscle from my back) and a silicone implant (the lat flap alone would make me a small A cup; using the implant will make me more my normal size). The muscle over the implant will make the implant look more natural.
Silicone has earned a nasty reputation in breast implants in past years, but my research shows that it has become very safe. There is a 13 year (so far) study underway with the new, improved implants, and there is compelling reason to believe that they are the best choice for me. I will outline my reasons in another post some day - today I'm just too tired to rehash all of it here.
The right side surgery will involve perhaps 5 hours on an operating table, and 4-5 days in the hospital, followed by about a 4 week recovery. Ack.
Really, it's all overwhelming. My strength will be tested again, more times than I can count. I know that I am strong but I certainly hope that this doesn't cause me to find my breaking point!
I will be relieved to get my ovaries and remaining breast tissue out of me. I do not want to worry about lurking cancer. Now that the decisions have been made, I just want to get it over with. I've spent a good deal of time thinking about it, and I just want to be done.
I will return to Dr. Miles for the left side reconstruction, as well, and hope to move forward with that in October, when I'm healed from radiation. Because I had such a bad radiation burn, I may need extra time for my skin to heal and gain resiliancy, but only time will tell. I still pray that I will be done with all surgeries and treatments in calendar year 2006 (except Femara, and maybe Herceptin). Did I mention that this is a LONG road?!
I hope that in June, with my new breast and no fear about ovarian cancer, I will spend the bulk of my time training for the 3-Day. I will train intermittantly between now and then, as my health allows, but it's going to be a rocky road, I see. All this surgery is rough on a body.
Today I also had my Herceptin infusion, and my last Lupron shot (I won't need Lupron once my ovaries are out).
Today I asked Dr. Rinn if she would consider crossing the finish line with me, perhaps walking the last hour of the 3-Day with me. She has helped me through the ugliest parts of treatment, and I would like to share this victory with her. She said that she'd be honored, and that though she couldn't do the whole walk, she would like to do the whole last day with me. I love this woman! It will be incredibly meaningful to share the finish line with her on the team, and to introduce her to the amazing friends who walk at my side, and to have Tessa & Ryan cheer us as we complete the walk. I am blessed to have this woman as my oncologist. I know that she has had sleepless nights dreaming up the best ways to help me, and I hope that she feels the reward of this experience, as well.
I'm really, really tired again. I think that ending radiation - both from an emotional standpoint and the physical aspects of delayed radiation fatigue - is tiring me out, and certainly I'm worn out by making so many huge decisions about my life and treatment. My burdens are lessened by Tessa's smiles, Ryan's help, a lovely dinner out with my family (thanks, Dad, for treating!) and Michele & Elliott last night, flowers from Mom & Dad S., and the many calls of love and support from friends and family. I'm doing okay...but I'm tired. I keep hoping that all this will get easier, and it doesn't. I know I need to take it one day at a time, and that is what I try to do...but the big picture looms, and it's still very overwhelming.
With love,
Kristina
I will do my gynecological surgery on the 30th of this month, and then hope to do the prophylactic mastectomy and reconstruction at the end of April (I will receive the date later this week).
For recon, I have chosen to do a lat flap (using the latimus dorsi muscle from my back) and a silicone implant (the lat flap alone would make me a small A cup; using the implant will make me more my normal size). The muscle over the implant will make the implant look more natural.
Silicone has earned a nasty reputation in breast implants in past years, but my research shows that it has become very safe. There is a 13 year (so far) study underway with the new, improved implants, and there is compelling reason to believe that they are the best choice for me. I will outline my reasons in another post some day - today I'm just too tired to rehash all of it here.
The right side surgery will involve perhaps 5 hours on an operating table, and 4-5 days in the hospital, followed by about a 4 week recovery. Ack.
Really, it's all overwhelming. My strength will be tested again, more times than I can count. I know that I am strong but I certainly hope that this doesn't cause me to find my breaking point!
I will be relieved to get my ovaries and remaining breast tissue out of me. I do not want to worry about lurking cancer. Now that the decisions have been made, I just want to get it over with. I've spent a good deal of time thinking about it, and I just want to be done.
I will return to Dr. Miles for the left side reconstruction, as well, and hope to move forward with that in October, when I'm healed from radiation. Because I had such a bad radiation burn, I may need extra time for my skin to heal and gain resiliancy, but only time will tell. I still pray that I will be done with all surgeries and treatments in calendar year 2006 (except Femara, and maybe Herceptin). Did I mention that this is a LONG road?!
I hope that in June, with my new breast and no fear about ovarian cancer, I will spend the bulk of my time training for the 3-Day. I will train intermittantly between now and then, as my health allows, but it's going to be a rocky road, I see. All this surgery is rough on a body.
Today I also had my Herceptin infusion, and my last Lupron shot (I won't need Lupron once my ovaries are out).
Today I asked Dr. Rinn if she would consider crossing the finish line with me, perhaps walking the last hour of the 3-Day with me. She has helped me through the ugliest parts of treatment, and I would like to share this victory with her. She said that she'd be honored, and that though she couldn't do the whole walk, she would like to do the whole last day with me. I love this woman! It will be incredibly meaningful to share the finish line with her on the team, and to introduce her to the amazing friends who walk at my side, and to have Tessa & Ryan cheer us as we complete the walk. I am blessed to have this woman as my oncologist. I know that she has had sleepless nights dreaming up the best ways to help me, and I hope that she feels the reward of this experience, as well.
I'm really, really tired again. I think that ending radiation - both from an emotional standpoint and the physical aspects of delayed radiation fatigue - is tiring me out, and certainly I'm worn out by making so many huge decisions about my life and treatment. My burdens are lessened by Tessa's smiles, Ryan's help, a lovely dinner out with my family (thanks, Dad, for treating!) and Michele & Elliott last night, flowers from Mom & Dad S., and the many calls of love and support from friends and family. I'm doing okay...but I'm tired. I keep hoping that all this will get easier, and it doesn't. I know I need to take it one day at a time, and that is what I try to do...but the big picture looms, and it's still very overwhelming.
With love,
Kristina
We've come a long way, baby
Here's a couple of pictures from December, including my last day of chemo. I didn't take any full body shots when I was my heaviest, but I think you can see the difference.
Done with radiation...and pictures
Radiation is completely finished. My team was kind to me, and I will miss the friendly smiles of Luz, Jude, and Marie...but I will not miss the daily appointment!
I'm also attaching pictures of my new hair (I even included a silly shot of my hair all fluffed up so you can see how long it is) and slimmer self. I have gone from an unhealthy BMI to a very healthy one (23) and I can't wait to see what the next few pounds do to flatten my tummy etc. And then, of course, recent pic of Tessa, because she's so much more fun to look at than I am!
Today I have another meeting with a another plastic surgeon, and a meeting with the oncologist, and a Herceptin infusion (back at the chemo ward, as it takes over an hour), and a Lupron shot. Radiation is done, but treatment is not.
Love,
Kristina
PS In the pics, I'm wearing a too-large size large t-shirt, because all my clothes are too big for me. I did, however, buy two pairs of SIZE 8 pants, one of which I'm wearing in the pic. I have not been a size 8 since I-don't-know-when and that feels really darn good. I tried on a dozen pairs of pants, and all the 10's were too big, and all the 8's fit. Hurrah!
Monday, March 06, 2006
The long and winding road - more and more treatment
Only one more radiation, and my skin is doing very well. Hallelujah! Tomorrow, Ryan and Tessa will go with me, and we'll visit the piroshkie man (his name is Dimitri), and then I will be DONE with all this radiation business, and can get on to healing from radiation.
But I'm not even close to being "done."
Today I met with the gyn.-onc., Dr. Paley, and I liked her instantly. There are no easy fixes, though (and I'm learning that lesson over, and over, and over in my life) and it seems that I must have a laproscopically-aided vaginal hysterectomy and salino-oopharectomy. (Pardon me if I have spelling errors here...!) What this means is that I will have incisions made at my bellybutton, pubic hair line, and over each ovary (four incisions each an inch or so long), and then they'll remove my ovaries, tubes, and uterus, pulling the whole thing out my vagina. They will rinse my abdominal cavity (using a "wash" technique) and then collect the fluid from the rinse to test for ovarian cells with abnormalities. If this sounds unattractive to you, just imagine how it makes me feel. Sigh.
Surgery is scheduled for March 30th. I will be in the hospital (Swedish) overnight at minimum; recovery is a few weeks.
Today the doctor told me that she thought, based on the data, that I had between a 40% and a 60% chance of getting ovarian cancer before I turn 80, unless I have this procedure. Lovely. I have also read in several places that shutting down my ovaries permanently (and there's no more permanent way than this) reduces my chances of recurrant breast cancer by 60%. Needless to say, I am not debating this procedure: I see it as something that I absolutely must do.
I was hoping to get away with a simple oopharectomy, but the evidence is against it. My doctor co-authored a study at UW when she was a resident there that found that there was a relatively high risk of ovarian cancer in the leftover tubes if only the ovaries were removed. This study has been replicated widely at other centers. The only way to remove the entire tube is to remove the uterus the tubes connect to...so it all goes.
The good news is that ovarian cancer, when caught early, is highly treatable. The bad news is that I have a 10-17% chance that they will actually find trace amounts of ovarian cancer when they open me up. These numbers are new to me, and I'm horribly disheartened at the thought that I may, at this very moment, have ovarian cancer lurking in my body. Hopefully I fall in the 83-90% of my population (young her2/neu+ ER+ women with breast cancer and a family history of breast cancer) who does NOT have early or late stage ovarian cancer. Only the surgery will tell. If microscopic amounts are found, then nothing in the surgery will change. If larger amounts of cancer are found, then I'll get an incision from my bellybutton to my pubic hair line, and who the **** knows what they'll actually remove...and then I'd do chemo again. Let's just hope that I don't have to find out what that would be like! The odds are in my favor that if cancer is found, it would be microscopic in nature, and I'm hoping that they don't find a single awful cell.
I meet with yet another plastic surgeon on Wednesday, and then I will make a decision about which plastic surgeon to use, and I will book the surgery to do my prophylactic mastectomy with immediate reconstruction. I need to wait one month after the hysterectomy, and I'll get in as soon as possible after that, so I'm looking at the end of April for that surgery.
This road goes on, and on, and on. I really want a break. I had it in my head that I'd be temporarily (until after the 3-Day) done when Easter came around, but that is not the case...I will be recovering from the hysterectomy and getting ready for the even bigger reconstruction.
Femara continues to treat me well - no joint pain, no side effects. So far, my heart continues to respond well to the every-three-weeks Herceptin, as well. I am attacking this damn disease on every front, and I intend to be victorious, but what a major, major pain it all is. Enough already!!!
Physical therapy is going well, and I'm working on upper body to get back mobility in my left arm and loosen up my (very tight) shoulders; I'm also working on core strength the prepare for surgery. The more fit I am, the easier the surgery should be for me.
And speaking of being fit...a positive ending for this sort of negative posting. After losing 23 pounds, my jeans weren't fitting very well, so I went shopping between medical appointments (I had 4!) today. I tried on a dozen pairs of pants, and (drumroll, please!) I AM A SIZE 8!!!!!!!! Just for fun, I tried on a number of cute dresses, and since a few that I liked were only available in size 10, I tried them on, only to find out that they were most definitely too big. This is FABULOUS news! I bought two pairs of jeans - since jeans are my "uniform" and I'll be wearing them non-stop as these are the only pairs of pants that I own that will truly fit me right now - and I'm wearing them with pride. This was most certainly a bright spot in an otherwise cloudy day.
Love,
Kristina
But I'm not even close to being "done."
Today I met with the gyn.-onc., Dr. Paley, and I liked her instantly. There are no easy fixes, though (and I'm learning that lesson over, and over, and over in my life) and it seems that I must have a laproscopically-aided vaginal hysterectomy and salino-oopharectomy. (Pardon me if I have spelling errors here...!) What this means is that I will have incisions made at my bellybutton, pubic hair line, and over each ovary (four incisions each an inch or so long), and then they'll remove my ovaries, tubes, and uterus, pulling the whole thing out my vagina. They will rinse my abdominal cavity (using a "wash" technique) and then collect the fluid from the rinse to test for ovarian cells with abnormalities. If this sounds unattractive to you, just imagine how it makes me feel. Sigh.
Surgery is scheduled for March 30th. I will be in the hospital (Swedish) overnight at minimum; recovery is a few weeks.
Today the doctor told me that she thought, based on the data, that I had between a 40% and a 60% chance of getting ovarian cancer before I turn 80, unless I have this procedure. Lovely. I have also read in several places that shutting down my ovaries permanently (and there's no more permanent way than this) reduces my chances of recurrant breast cancer by 60%. Needless to say, I am not debating this procedure: I see it as something that I absolutely must do.
I was hoping to get away with a simple oopharectomy, but the evidence is against it. My doctor co-authored a study at UW when she was a resident there that found that there was a relatively high risk of ovarian cancer in the leftover tubes if only the ovaries were removed. This study has been replicated widely at other centers. The only way to remove the entire tube is to remove the uterus the tubes connect to...so it all goes.
The good news is that ovarian cancer, when caught early, is highly treatable. The bad news is that I have a 10-17% chance that they will actually find trace amounts of ovarian cancer when they open me up. These numbers are new to me, and I'm horribly disheartened at the thought that I may, at this very moment, have ovarian cancer lurking in my body. Hopefully I fall in the 83-90% of my population (young her2/neu+ ER+ women with breast cancer and a family history of breast cancer) who does NOT have early or late stage ovarian cancer. Only the surgery will tell. If microscopic amounts are found, then nothing in the surgery will change. If larger amounts of cancer are found, then I'll get an incision from my bellybutton to my pubic hair line, and who the **** knows what they'll actually remove...and then I'd do chemo again. Let's just hope that I don't have to find out what that would be like! The odds are in my favor that if cancer is found, it would be microscopic in nature, and I'm hoping that they don't find a single awful cell.
I meet with yet another plastic surgeon on Wednesday, and then I will make a decision about which plastic surgeon to use, and I will book the surgery to do my prophylactic mastectomy with immediate reconstruction. I need to wait one month after the hysterectomy, and I'll get in as soon as possible after that, so I'm looking at the end of April for that surgery.
This road goes on, and on, and on. I really want a break. I had it in my head that I'd be temporarily (until after the 3-Day) done when Easter came around, but that is not the case...I will be recovering from the hysterectomy and getting ready for the even bigger reconstruction.
Femara continues to treat me well - no joint pain, no side effects. So far, my heart continues to respond well to the every-three-weeks Herceptin, as well. I am attacking this damn disease on every front, and I intend to be victorious, but what a major, major pain it all is. Enough already!!!
Physical therapy is going well, and I'm working on upper body to get back mobility in my left arm and loosen up my (very tight) shoulders; I'm also working on core strength the prepare for surgery. The more fit I am, the easier the surgery should be for me.
And speaking of being fit...a positive ending for this sort of negative posting. After losing 23 pounds, my jeans weren't fitting very well, so I went shopping between medical appointments (I had 4!) today. I tried on a dozen pairs of pants, and (drumroll, please!) I AM A SIZE 8!!!!!!!! Just for fun, I tried on a number of cute dresses, and since a few that I liked were only available in size 10, I tried them on, only to find out that they were most definitely too big. This is FABULOUS news! I bought two pairs of jeans - since jeans are my "uniform" and I'll be wearing them non-stop as these are the only pairs of pants that I own that will truly fit me right now - and I'm wearing them with pride. This was most certainly a bright spot in an otherwise cloudy day.
Love,
Kristina
Thursday, March 02, 2006
Radiation, surgery, weight, and money
Radiation: I have three left. My skin has not experienced further degeneration since re-starting...after this posting, I will go an do a saline rinse, Burrows soak, etc. because they're working. Only three left....I think I can, I think I can, I think I can!
Surgery: Though I had to cancel my March 22 surgery date, it looks like another date will follow soon on the heels. It seems that the surgeries I'm doing (lat flaps) are pretty invasive and so they can't do recon. on both sides simultaneously, and would prefer to do one side at a time. I'll do the proph. side soon, but I'm waiting to figure out if I should do the mastectomy first or the oopharectomy first, and as soon as I figure that out I'll book the surgeries.
Weight: I officially weigh less than I did (by one pound) than when I started chemo! I have lost 22 pounds, plus the extra, of the hated chemo weight. HURRAH! Now I'm not working on getting back to normal, I'm working on getting skinny. I can't wait to see what the next few pounds do!
Money: I am pleased to announce that I have accepted a contract position through the Bellevue School District, working on curriculum development. I'm absolutely thrilled by this development because a) I really enjoyed curriculum development when I was teaching, and b) the pay is $24/hour, c) the hours are flexible (I've signed up for 10 hours per week), and d) I can work from home. This is about the best gig I can imagine for a stay-at-home-mom in need of cash, and I'm excited to get started.
I am DETERMINED to get my life back in order. I can do this...
Kristina
Surgery: Though I had to cancel my March 22 surgery date, it looks like another date will follow soon on the heels. It seems that the surgeries I'm doing (lat flaps) are pretty invasive and so they can't do recon. on both sides simultaneously, and would prefer to do one side at a time. I'll do the proph. side soon, but I'm waiting to figure out if I should do the mastectomy first or the oopharectomy first, and as soon as I figure that out I'll book the surgeries.
Weight: I officially weigh less than I did (by one pound) than when I started chemo! I have lost 22 pounds, plus the extra, of the hated chemo weight. HURRAH! Now I'm not working on getting back to normal, I'm working on getting skinny. I can't wait to see what the next few pounds do!
Money: I am pleased to announce that I have accepted a contract position through the Bellevue School District, working on curriculum development. I'm absolutely thrilled by this development because a) I really enjoyed curriculum development when I was teaching, and b) the pay is $24/hour, c) the hours are flexible (I've signed up for 10 hours per week), and d) I can work from home. This is about the best gig I can imagine for a stay-at-home-mom in need of cash, and I'm excited to get started.
I am DETERMINED to get my life back in order. I can do this...
Kristina
Tuesday, February 28, 2006
Five more left
Today I completed my last full field radiation treatment. All that's left are five boosts. I can do this...
Kristina
Kristina
Monday, February 27, 2006
Radiation: NOT done
Today I went for my radiation check up. After a weekend of slathering up with soaks, compresses, and ointments (boring!) I have excellent results: no more ooze. The staff all stood around me and oohed and ahhed over how much better my chest looks. It's a remarkable difference.
This means that I'm back on the radiation bandwagon. Today I had a full treatment area dosage, and I get another one of the same tomorrow; after that, I will do the five boosts (on a smaller area, over the scar line). In other words, I had a delay, but I will do the full course of radiation.
This also means that I need to keep up with the soaks, rinses, and ointments. Sigh.
I have very mixed feelings about this. Overall, of course, it's better for my long term prognosis to complete radiation, so I will. In the short term, though, it's a bit frightening.
My new end date for radiation is March 7. I will not be writing it on my calendar, as the date has slipped so many times that it wouldn't surprise me if it slipped again.
Six more to go.
Kristina
This means that I'm back on the radiation bandwagon. Today I had a full treatment area dosage, and I get another one of the same tomorrow; after that, I will do the five boosts (on a smaller area, over the scar line). In other words, I had a delay, but I will do the full course of radiation.
This also means that I need to keep up with the soaks, rinses, and ointments. Sigh.
I have very mixed feelings about this. Overall, of course, it's better for my long term prognosis to complete radiation, so I will. In the short term, though, it's a bit frightening.
My new end date for radiation is March 7. I will not be writing it on my calendar, as the date has slipped so many times that it wouldn't surprise me if it slipped again.
Six more to go.
Kristina
Friday, February 24, 2006
Chest update
Well, today I didn't leave the house. I did five saline rinses, five Burrows soaks, 3 antibiotic creams, and 2 Biafine creams. I kept my chest open to air most of the time (and decided that a cardigan with only the top button buttoned counted as "open to air" because otherwise I'd freeze, even with the thermastat turned up to 69), as well.
The result? I think I'm looking pretty good. A lot of the black stuff has come off (slowly, painfully, I might add) and there are only a couple small bloody spots. There are only two small spots with ooze, each about one inch long, and this is a HUGE improvement. At the worst, my entire chest (the treated area, anyway) was covered with ooze. Yesterday, there were still two big spots: one about 4 inches by 3 inches, and the other about 2.5 inches in diameter. Two oozy small spots is better than two oozy big spots.
This is all, I must say, more disgusting than I thought I signed up for.
I didn't take a painkiller today, and I did pretty well. I also sent Ryan and Tessa away to amuse themselves, and didn't lift a finger. (Well, I made lunch, does that count?) I'm not at all my usual self, and I still feel some pain, but it's so, so, so much better that it's actually bearable. I hate to think about how unbearable it was earlier this week, but the comparison is immense.
Tomorrow I hope to be active (at some level) with Tessa, to leave the house for a while, and to continue healing. I know I'm going to shed another layer or two of skin (there's still black skin that has to be shed) but I do believe that I'm healing.
I try not to think of it, but I do think that I will be okay'd for radiation on Monday. This is good, because anything that fights breast cancer is my friend...but it's also terrifying. Will it get "bad" again? How bad will it get? Can I handle much more of this?
Time will tell.
With love,
Kristina
The result? I think I'm looking pretty good. A lot of the black stuff has come off (slowly, painfully, I might add) and there are only a couple small bloody spots. There are only two small spots with ooze, each about one inch long, and this is a HUGE improvement. At the worst, my entire chest (the treated area, anyway) was covered with ooze. Yesterday, there were still two big spots: one about 4 inches by 3 inches, and the other about 2.5 inches in diameter. Two oozy small spots is better than two oozy big spots.
This is all, I must say, more disgusting than I thought I signed up for.
I didn't take a painkiller today, and I did pretty well. I also sent Ryan and Tessa away to amuse themselves, and didn't lift a finger. (Well, I made lunch, does that count?) I'm not at all my usual self, and I still feel some pain, but it's so, so, so much better that it's actually bearable. I hate to think about how unbearable it was earlier this week, but the comparison is immense.
Tomorrow I hope to be active (at some level) with Tessa, to leave the house for a while, and to continue healing. I know I'm going to shed another layer or two of skin (there's still black skin that has to be shed) but I do believe that I'm healing.
I try not to think of it, but I do think that I will be okay'd for radiation on Monday. This is good, because anything that fights breast cancer is my friend...but it's also terrifying. Will it get "bad" again? How bad will it get? Can I handle much more of this?
Time will tell.
With love,
Kristina
Thursday, February 23, 2006
Improvement?
Today I have done three sets of saline rinses, three sets of Burrows compress soaks, two applications of the antibiotic cream, and one application of Biafine. Additionally, I've been exposing the area to air for much of the time (okay, so I cheated and left the house today, but I plan to stay home for a while now!). I think that I am getting some improvement as a result. The area doesn't seem as moist and yucky as before, and I think I see some healing.
Thank goodness. A few more days of this might work the miracle I'm hoping for.
Today I weighed in at Weight Watchers, and I lost 0.6 pounds. Since I had a big dinner last night and I didn't use up all of my flex points last week and I didn't exercise at all, I'm pleased with even a small loss. I'm now down 20.0 pounds, and I'm very happy with that. I hope to lose another two pounds in the next week or so, and then I'll be back to my pre-chemo weight...and I can start working on the weight that I took years to add on.
Mentally, I'm okay. This whole process is exhausting, and it's emotionally exhausting to have to spend a half hour out of every two hours caring for my skin...it's one of those reminders about how bad this disease is. Anyway, I'm holding up okay. I'm a bit more fragile than usual, but I will survive. I can't wait until this is over and my chest doesn't ooze gross stuff and I can wear my regular clothes! Sometimes the little things in life are the big things.
Love,
Kristina
Thank goodness. A few more days of this might work the miracle I'm hoping for.
Today I weighed in at Weight Watchers, and I lost 0.6 pounds. Since I had a big dinner last night and I didn't use up all of my flex points last week and I didn't exercise at all, I'm pleased with even a small loss. I'm now down 20.0 pounds, and I'm very happy with that. I hope to lose another two pounds in the next week or so, and then I'll be back to my pre-chemo weight...and I can start working on the weight that I took years to add on.
Mentally, I'm okay. This whole process is exhausting, and it's emotionally exhausting to have to spend a half hour out of every two hours caring for my skin...it's one of those reminders about how bad this disease is. Anyway, I'm holding up okay. I'm a bit more fragile than usual, but I will survive. I can't wait until this is over and my chest doesn't ooze gross stuff and I can wear my regular clothes! Sometimes the little things in life are the big things.
Love,
Kristina
Wednesday, February 22, 2006
Housebound!
I just spoke to the nurse at the radiation oncologist's office. I am to do "intensive wound care" for the next four days, with a 2-3 hour cycle of creams, soaks, antibiotics, and compresses, and being topless (exposing the treatment field to air) for the maximum amount of time possible. YIKES! I'm not good at staying home, so wish me well....
Radiation: Done?
Today I met again with Dr. Morris. My burn is worse today than ever before, and this is to be expected given that the side effects lag by 1-2 weeks after treatments. She looked at me, and said "I think we need to stop."
I tried to talk her out of it, telling her that I didn't come this far only to quit, and that I could take 7 more days of anything so that I could look myself in the eye knowing that I have done EVERYTHING possible to live without recurrance. 7 days of hell is one thing, but I don't plan on dying from this disease. I was very, very clear with Dr. Morris that I was tougher than radiation, and if it took toughing it out, I could manage. (I should add...I can manage because of lovely, lovely Percocet. I understand why people become addicted to this drug...it makes the intolerable tolerable. After one day's use I'm no addict but Ryan's got his eye on me!)
In any case, Dr. Morris listened, but she gave me some compelling reasons to stop. She is Harvard educated, and says that there are two Harvard hospitals across the street from one another (perhaps *susan* will know the names; I've forgotten). One of the hospitals prescribes 45 Grays of radiation, and the other hospital prescribes 50 Grays. Dr. Morris came from the 50 Grays hospital, so that's what I was signed up to do, but there is no evidence to suggest that 50 is better than 45 or vice versa. I have completed 46.8 Grays - right in between these two standards. Because I have met the minimum, and even exceeded it slightly, Dr. Morris feels that there is no significant advantage to continuing with full field radiation, and I am stopping radiation two treatments shy of the total.
I still have 5 radiation boosts scheduled (these are done to the scar line, but not the whole treatment area) and I will go in on Monday to see whether I'm healed enough to treat. It is uncertain as to whether we will move forward with the boosts or not, based on how I heal (or not).
I think that I am comfortable with these decisions. My skin is a wreck and more disgusting than I thought possible, and there is a very real concern that further radiation would bring on a dangerous infection; at some point, the risks far outweigh the potential benefits. We are at that point now.
So, I am slathering up with an antibiotic, and doing saline rinses three times a day, and Burrows compresses three times a day, and Biafine four times a day, and airing it out as much as possible....and taking Percocet regularly. Hopefully by Monday I will be healed enough to move forward and do the boost, but if not, I will try again on Wednesday. If on Wednesday it's not healed enough, then I will be done.
Dr. Morris promises me that she thinks that we have done more than enough. She said that what's evident on my skin is evidence of what's happening to any stray cancer cells, and that any cancer cells that have escaped radiation thus far are probably radiation resistant anyway.
Today I officially cancelled (well, postponed) my mastectomy, as well. I'll do it when I do reconstruction on the right side, in the fall or winter of next year. Instead, I'll do the less intense oopharectomy this spring, and cross that off the list.
What a day. These decisions are truly life and death, and exhausting. I think I've chosen well, and I will be able to live with my decision. As a matter of fact, I plan on living with it until I'm 100.
Love,
Kristina
I tried to talk her out of it, telling her that I didn't come this far only to quit, and that I could take 7 more days of anything so that I could look myself in the eye knowing that I have done EVERYTHING possible to live without recurrance. 7 days of hell is one thing, but I don't plan on dying from this disease. I was very, very clear with Dr. Morris that I was tougher than radiation, and if it took toughing it out, I could manage. (I should add...I can manage because of lovely, lovely Percocet. I understand why people become addicted to this drug...it makes the intolerable tolerable. After one day's use I'm no addict but Ryan's got his eye on me!)
In any case, Dr. Morris listened, but she gave me some compelling reasons to stop. She is Harvard educated, and says that there are two Harvard hospitals across the street from one another (perhaps *susan* will know the names; I've forgotten). One of the hospitals prescribes 45 Grays of radiation, and the other hospital prescribes 50 Grays. Dr. Morris came from the 50 Grays hospital, so that's what I was signed up to do, but there is no evidence to suggest that 50 is better than 45 or vice versa. I have completed 46.8 Grays - right in between these two standards. Because I have met the minimum, and even exceeded it slightly, Dr. Morris feels that there is no significant advantage to continuing with full field radiation, and I am stopping radiation two treatments shy of the total.
I still have 5 radiation boosts scheduled (these are done to the scar line, but not the whole treatment area) and I will go in on Monday to see whether I'm healed enough to treat. It is uncertain as to whether we will move forward with the boosts or not, based on how I heal (or not).
I think that I am comfortable with these decisions. My skin is a wreck and more disgusting than I thought possible, and there is a very real concern that further radiation would bring on a dangerous infection; at some point, the risks far outweigh the potential benefits. We are at that point now.
So, I am slathering up with an antibiotic, and doing saline rinses three times a day, and Burrows compresses three times a day, and Biafine four times a day, and airing it out as much as possible....and taking Percocet regularly. Hopefully by Monday I will be healed enough to move forward and do the boost, but if not, I will try again on Wednesday. If on Wednesday it's not healed enough, then I will be done.
Dr. Morris promises me that she thinks that we have done more than enough. She said that what's evident on my skin is evidence of what's happening to any stray cancer cells, and that any cancer cells that have escaped radiation thus far are probably radiation resistant anyway.
Today I officially cancelled (well, postponed) my mastectomy, as well. I'll do it when I do reconstruction on the right side, in the fall or winter of next year. Instead, I'll do the less intense oopharectomy this spring, and cross that off the list.
What a day. These decisions are truly life and death, and exhausting. I think I've chosen well, and I will be able to live with my decision. As a matter of fact, I plan on living with it until I'm 100.
Love,
Kristina
Tuesday, February 21, 2006
Radiation burn, pain, and feeling low
I am really struggling right now. My radiation burn is getting worse and worse, and aside from being truly disgusting, it's very painful. Today, after my 4 day break from radiation, I walked into the radiation area and the receptionist saw the look on my face and said, "I think you need to see a doctor." I agreed, and they sent me back to the room. When the nurse came in to look at my burn, I burst into tears.
The doctor told me that I could stop radiation now because I'm so burned. I refused. I've looked into it, and it's not a good idea, because then I wouldn't get radiation's benefits. It's sort of like taking antibiotics: you need to take the full dosage to get the benefits.
Instead, I got all kinds of new ointments and treatments, along with a stronger prescription for Percocet to take all day every day if I need it.
Physically, it hurts more than I imagined. Mentally, I'm struggling too. I have been doing this for so long now, with few breaks, and it's starting to catch up with me. This disease is so freaking brutal....but the treatment is downright medievel, really.
I only have 7 more treatments, and only 2 of these are to the whole chest, as the other 5 are boosts. I will survive through them, but please forgive me if I see you and act like a witch because I'm truly at my limit right now.
I am postponing my mastectomy. For one thing, with a burn this bad, it won't be healed by the surgery date, and if they put tape on my dressings it would go on the painful side....totally unacceptable. For another thing, my risk of infection is higher becasue of the intensity of the burn. Most importantly, though, I mentally just can't take it right now. I'm at the end of my rope, and I need a break. Desperately.
I'm feeling sorry for myself, and I feel negative, and I know I'm whining. But I'm truthful on this blog, if nothing else, so I'm sharing this.
And a note to anyone reading this who is/might be going through radiation: I am NOT a usual case. DO NOT expect this to happen to you...I just won the unlucky radiation lottery, it seems. Many people go through it with only a slight pinkening of the chest, and are just fine.
I'll post something positive soon, but for now, that's it, folks. Thank you for reading, and for caring. If you have something nice to say to me, today would be a great day to share it, because I will take all the uplift I can get.
Love,
Kristina
The doctor told me that I could stop radiation now because I'm so burned. I refused. I've looked into it, and it's not a good idea, because then I wouldn't get radiation's benefits. It's sort of like taking antibiotics: you need to take the full dosage to get the benefits.
Instead, I got all kinds of new ointments and treatments, along with a stronger prescription for Percocet to take all day every day if I need it.
Physically, it hurts more than I imagined. Mentally, I'm struggling too. I have been doing this for so long now, with few breaks, and it's starting to catch up with me. This disease is so freaking brutal....but the treatment is downright medievel, really.
I only have 7 more treatments, and only 2 of these are to the whole chest, as the other 5 are boosts. I will survive through them, but please forgive me if I see you and act like a witch because I'm truly at my limit right now.
I am postponing my mastectomy. For one thing, with a burn this bad, it won't be healed by the surgery date, and if they put tape on my dressings it would go on the painful side....totally unacceptable. For another thing, my risk of infection is higher becasue of the intensity of the burn. Most importantly, though, I mentally just can't take it right now. I'm at the end of my rope, and I need a break. Desperately.
I'm feeling sorry for myself, and I feel negative, and I know I'm whining. But I'm truthful on this blog, if nothing else, so I'm sharing this.
And a note to anyone reading this who is/might be going through radiation: I am NOT a usual case. DO NOT expect this to happen to you...I just won the unlucky radiation lottery, it seems. Many people go through it with only a slight pinkening of the chest, and are just fine.
I'll post something positive soon, but for now, that's it, folks. Thank you for reading, and for caring. If you have something nice to say to me, today would be a great day to share it, because I will take all the uplift I can get.
Love,
Kristina
Sunday, February 19, 2006
decisions
Since my radiation is harder to recover from than I'd anticipated, I'm starting to re-think my decision to have a second mastectomy in March. I just don't know how much more of this stuff I can take, and the idea of having major surgery that is, quite obviously, going to hurt like **** as soon as the pain in my left chest subsides is really sort of frightening.
Tonight I started thinking that maybe I would go ahead with the oopharectomy this spring, but put off the right mastectomy until I do reconstruction on the left side, scheduled (hopefully) for this fall.
I'd like my ovaries out because I want ALL estrogen gone from my body, and then I wouldn't worry about ovarian cancer. If I don't have to do a complete hysterectomy, then it's not a major surgery, and the recovery is pretty simple for most people. It seems a lot easier than removing my breast and then moving muscle and skin from my back (the lat flap) to reconstruct it.
These decisions are so hard to make. I will wait to talk to the oncology gynecologist early in March, and the second plastic surgeon later this month, before making my decisions....
It's all exhausting.
Kristina
Tonight I started thinking that maybe I would go ahead with the oopharectomy this spring, but put off the right mastectomy until I do reconstruction on the left side, scheduled (hopefully) for this fall.
I'd like my ovaries out because I want ALL estrogen gone from my body, and then I wouldn't worry about ovarian cancer. If I don't have to do a complete hysterectomy, then it's not a major surgery, and the recovery is pretty simple for most people. It seems a lot easier than removing my breast and then moving muscle and skin from my back (the lat flap) to reconstruct it.
These decisions are so hard to make. I will wait to talk to the oncology gynecologist early in March, and the second plastic surgeon later this month, before making my decisions....
It's all exhausting.
Kristina
Home from Portland
I didn't write about it previously in the blog because it was a surprise for Ryan's dad, but we spent Friday and Saturday in Portland to celebrate Ryan's dad's 75th birthday. Happy birthday, Dad Surface! The entire family was there - all 21 of us - and Dad was actually surprised (I think). We had a great time hanging out with everyone, and Tessa was in absolute nirvana to be surrounded by 10 doting cousins. (Sometimes it's very fun to be the littlest!)
The trip went very well, and we all had a great time, but my radiation burn is NOT being kind to me. On Saturday after my shower a big piece of skin came off under my arm and started bleeding where the skin was missing. I sat on the edge of the tub and cried for a minute because it hurt and because it's frustrating, and because it's scary knowing that it's this bad now and that it will get worse for a few weeks. I am horrified to think what "worse" looks like at this point. The top layer(s) of skin have come off almost entirely from the radiated area, not just under my arm now, and under my arm I lose more every day. I'm not exercising because every movement is painful, and that is a mental challenge because I WANT to walk and move and exercise. Maybe after another day or so I will try again, but I have just felt the need to curl into a ball and not move for a while.
Despite all this grim stuff, I'm doing pretty well. The rest of my body (front left chest and underarm excluded) feels great, and the scale continues to be kind to me.
I started Femara three days ago, as I mentioned, and I do not yet feel any ill effects. I hope this bodes very well for the future. My adored sister-in-law Kerri tried Femara as part of her treatment, and was in bed with horrible headaches for the first three days (oh, Kerri, I'm SO sorry!) and had to switch to a different medication. It looks like Femara is not being so unkind to me, and I hold out hope that my five year relationship with Femara will be healthy.
The sun is shining here, though it's very cold, and we're enjoying a quiet day at home. (So quiet for me, in fact, that I slept in until 10am....UNHEARD OF!....while Ryan took Tessa out to play and go to Starbucks. Thanks, Ryan, for letting me sleep in.) We're off to enjoy it!
Love to all,
Kristina
The trip went very well, and we all had a great time, but my radiation burn is NOT being kind to me. On Saturday after my shower a big piece of skin came off under my arm and started bleeding where the skin was missing. I sat on the edge of the tub and cried for a minute because it hurt and because it's frustrating, and because it's scary knowing that it's this bad now and that it will get worse for a few weeks. I am horrified to think what "worse" looks like at this point. The top layer(s) of skin have come off almost entirely from the radiated area, not just under my arm now, and under my arm I lose more every day. I'm not exercising because every movement is painful, and that is a mental challenge because I WANT to walk and move and exercise. Maybe after another day or so I will try again, but I have just felt the need to curl into a ball and not move for a while.
Despite all this grim stuff, I'm doing pretty well. The rest of my body (front left chest and underarm excluded) feels great, and the scale continues to be kind to me.
I started Femara three days ago, as I mentioned, and I do not yet feel any ill effects. I hope this bodes very well for the future. My adored sister-in-law Kerri tried Femara as part of her treatment, and was in bed with horrible headaches for the first three days (oh, Kerri, I'm SO sorry!) and had to switch to a different medication. It looks like Femara is not being so unkind to me, and I hold out hope that my five year relationship with Femara will be healthy.
The sun is shining here, though it's very cold, and we're enjoying a quiet day at home. (So quiet for me, in fact, that I slept in until 10am....UNHEARD OF!....while Ryan took Tessa out to play and go to Starbucks. Thanks, Ryan, for letting me sleep in.) We're off to enjoy it!
Love to all,
Kristina
Thursday, February 16, 2006
Milestones
Today I had my Weight Watchers weigh in. I was not looking forward to it, since I had really pushed my points to the limit, and since I'd weighed myself three days earlier only to find that I hadn't lost an ounce. Well, surprise surprise, I weighed in to find that I had dropped another 3.4 pounds, down a new total of 19.4 pounds. WOW! I'm only 3 pounds (okay, 2.6 pounds) away from my pre-chemo weight, and I can't wait to kiss them goodbye. The funny thing is that I nearly quit WW this week because I was too tired and my body feels too sore from radiation to want to be disciplined with food, but I stuck it out...and I had a huge loss. Go figure!
Today I had a meeting with my oncologist, Dr. Rinn. She reports that my blood counts are great, and that I'm doing well. I'm doing so well, in fact, that we agreed that I should start my aromatase inhibitor, Femara, right away. Tonight I will take the first pill....and I won't stop for five years. This drug may have the same ability to fight my cancer that chemo had - isn't that amazing? It's just one more weapon in the arsenal to fight this **** disease, and I will take it joyfully. (Unless I get side effects...but I won't anticipate things that haven't yet happened.)
I also had radiation. The fun part of radiation is officially over; now, my skin is so tight and broken that just putting my arm over my head in the radiation machine is an act of will because it hurts so much. Clothing rubs, movement rubs, everything rubs my burning, itching, painful chest. Ugh. I am continuing my saline rinses, and slathering on Biafine, and crossing my fingers. I also have a prescription for Percocet so that I can numb the pain enough to sleep (first night is tonight...let's hope it works!).
I also had another Herceptin treatment. The treatment is given in the chemo ward, and I must say it brought back some relatively painful memories. Today while waiting for my appointment I met a woman who has stage IV breast cancer....it's scary, scary stuff. My heart ached for her but I just kept reminding myself that her journey is not mine.
I am hoping that with a four day break from radiation that my skin will heal enough to allow me to walk and exercise again. Now that I've found my exercise groove, I don't want to give it up!
Love,
Kristina
Today I had a meeting with my oncologist, Dr. Rinn. She reports that my blood counts are great, and that I'm doing well. I'm doing so well, in fact, that we agreed that I should start my aromatase inhibitor, Femara, right away. Tonight I will take the first pill....and I won't stop for five years. This drug may have the same ability to fight my cancer that chemo had - isn't that amazing? It's just one more weapon in the arsenal to fight this **** disease, and I will take it joyfully. (Unless I get side effects...but I won't anticipate things that haven't yet happened.)
I also had radiation. The fun part of radiation is officially over; now, my skin is so tight and broken that just putting my arm over my head in the radiation machine is an act of will because it hurts so much. Clothing rubs, movement rubs, everything rubs my burning, itching, painful chest. Ugh. I am continuing my saline rinses, and slathering on Biafine, and crossing my fingers. I also have a prescription for Percocet so that I can numb the pain enough to sleep (first night is tonight...let's hope it works!).
I also had another Herceptin treatment. The treatment is given in the chemo ward, and I must say it brought back some relatively painful memories. Today while waiting for my appointment I met a woman who has stage IV breast cancer....it's scary, scary stuff. My heart ached for her but I just kept reminding myself that her journey is not mine.
I am hoping that with a four day break from radiation that my skin will heal enough to allow me to walk and exercise again. Now that I've found my exercise groove, I don't want to give it up!
Love,
Kristina
Wednesday, February 15, 2006
Radiation postponed
Yesterday I went to my regular radiation appointment, got all set up...and then had to get off the machine. My underarm area is a disaster, and it appears infected (it's oozing...disgusting). They told me to take the day off and then to come back the next day to get checked out by the doctor to see if we can proceed.
This is a huge blow psychologically, although of course I realize that one day here or there doesn't make a difference to the final outcome, it's really hard for me somehow. I want to be DONE. And "done" gets further away every day.
I am asking lots of questions of my team to see if I can continue to exercise, and to stay on the Weight Watchers program. I've lost 16 pounds and I feel so much better that I just shudder at the thought of having to abandon this path, even temporarily, but I know my body needs to heal so that I can move forward. I'll let you know what I come up with.
Until then, I'm grumpy. This business of being a cancer patient is getting really, really old and I don't have a lot of energy for even minor detours.
Yesterday would have been unbearable except two things: One, we had a little cookie party at our house for some of Tessa's (and my!) West Seattle friends, and the kids were just cute and had fun, so that was fun for me. Two, Ryan was good to me for Valentine's and I got a card that was so perfect it made me cry (in a good way). We had a romantic dinner in last night (my gift to Ryan was cooking on Valentine's Day!) while my parents took Tessa overnight, and that was relaxing.
With love,
Kristina
This is a huge blow psychologically, although of course I realize that one day here or there doesn't make a difference to the final outcome, it's really hard for me somehow. I want to be DONE. And "done" gets further away every day.
I am asking lots of questions of my team to see if I can continue to exercise, and to stay on the Weight Watchers program. I've lost 16 pounds and I feel so much better that I just shudder at the thought of having to abandon this path, even temporarily, but I know my body needs to heal so that I can move forward. I'll let you know what I come up with.
Until then, I'm grumpy. This business of being a cancer patient is getting really, really old and I don't have a lot of energy for even minor detours.
Yesterday would have been unbearable except two things: One, we had a little cookie party at our house for some of Tessa's (and my!) West Seattle friends, and the kids were just cute and had fun, so that was fun for me. Two, Ryan was good to me for Valentine's and I got a card that was so perfect it made me cry (in a good way). We had a romantic dinner in last night (my gift to Ryan was cooking on Valentine's Day!) while my parents took Tessa overnight, and that was relaxing.
With love,
Kristina
Monday, February 13, 2006
Radiation Update
(Aside: Welcome to the world, Camille! Congratulations to mom Heather, Dad Randal, and big brother Kelton. It was fabulous to get the call from Randal today that their daughter -it's a girl!- had arrived, and even more fun to get to meet her when she was just a couple hours old. What an incredible highlight to my day!)
Well, things aren't improving, and they're not going to improve for some time to come. This weekend my underarm on the radiated side lost some more skin, and started oozing. (Sorry if you just lost your lunch at that thought...!) It's even less pretty than it sounds, and it's downright uncomfortable. Last night, every time I moved it woke me up. GRRRRR. I can deal with the red/black/purple aspects of my chest, but pain and oozing are terrible. Unfortunately, for the most part I must grin and bear it. All clothes rub on it, and I'm not open to going around naked. Sigh!
In better news, I joined the ACTIVE program at Swedish. It's a program designed to help cancer patients regain mobility, range of motion, and fitness levels as they go through and complete treatment. In particular, they are going to get me in shape for my surgery next month, so that I don't lose even more range of motion when I do my right side. Anyway, today I had to do a treadmill test where they put me on the machine, hooked me up to oxygen saturation, heartbeat, and blood pressure monitors, and then increased the incline and speed in three minute intervals. The physical therapist conducting the test told me that I made it farther than any other patient to date, and that's good. Overall, the doc and PT told me that I'm pretty fit, and they were very pleased. It's a 12 week program, and I hope to see great changes during that time. They will use the data they received today to put together a custom plan for me...I can't wait to see it and to put it to use. I'm motivated!
My surgery next month has a new date: March 22. The plastic surgeon that I have yet to meet has tentatively booked me for that date as both she and Dr. Dawson are available; I will make up my mind whether to use her after I meet her. The new date is better because my parents will be back from Hawaii and able to care for Tessa that day, too, which is a relief.
I must get to bed...radiation fatigue is setting in and, as usual, I had a busy day. Love to all - Happy Valentine's Day!
Kristina
Well, things aren't improving, and they're not going to improve for some time to come. This weekend my underarm on the radiated side lost some more skin, and started oozing. (Sorry if you just lost your lunch at that thought...!) It's even less pretty than it sounds, and it's downright uncomfortable. Last night, every time I moved it woke me up. GRRRRR. I can deal with the red/black/purple aspects of my chest, but pain and oozing are terrible. Unfortunately, for the most part I must grin and bear it. All clothes rub on it, and I'm not open to going around naked. Sigh!
In better news, I joined the ACTIVE program at Swedish. It's a program designed to help cancer patients regain mobility, range of motion, and fitness levels as they go through and complete treatment. In particular, they are going to get me in shape for my surgery next month, so that I don't lose even more range of motion when I do my right side. Anyway, today I had to do a treadmill test where they put me on the machine, hooked me up to oxygen saturation, heartbeat, and blood pressure monitors, and then increased the incline and speed in three minute intervals. The physical therapist conducting the test told me that I made it farther than any other patient to date, and that's good. Overall, the doc and PT told me that I'm pretty fit, and they were very pleased. It's a 12 week program, and I hope to see great changes during that time. They will use the data they received today to put together a custom plan for me...I can't wait to see it and to put it to use. I'm motivated!
My surgery next month has a new date: March 22. The plastic surgeon that I have yet to meet has tentatively booked me for that date as both she and Dr. Dawson are available; I will make up my mind whether to use her after I meet her. The new date is better because my parents will be back from Hawaii and able to care for Tessa that day, too, which is a relief.
I must get to bed...radiation fatigue is setting in and, as usual, I had a busy day. Love to all - Happy Valentine's Day!
Kristina
Thursday, February 09, 2006
Yes, Tessa, that's right.
Today I read Tessa a new book, the classic tale of Sleeping Beauty. After the incredible success of The Nutcracker, we are going to return to the ballet, and this April they are doing the full production of Sleeping Beauty, and they will have children's matinees where the children are encouraged to come dressed like princes and princesses. This is too good to miss! We have started reading "Sleeping Beauty" as a means of introducing the story and helping Tessa to build excitement for the big day.
I bought two editions of the book. One is the Disney telling...not my favorite, but it's written at Tessa's level, and so I thought it was worthy on that regard. The other book has gorgeous illustrations (really, it's like an art book) and tells the tradiational version, not the Disney version, complete with language like "whenceforth" and "heretofore". Tessa didn't seem to mind the elevated language, though she did interrupt me dozens of times to get clarification on some of the words.
Well, at the beginning of the story, we are introduced to the King and Queen, and informed that they have been barren for three long years, and that they yearned for a child of their own. Tessa, in wisdom and innocence, turned to me and said, "Mommy, do wishes make children?"
I didn't have to think long about how much I had desired this beautiful child in my life, and how joyful I was when I learned that I was to become a mother. This is a much more eloquent explanation than any discussion of the birds and the bees that I could ever imagine...and it's just as true.
"Yes, Tessa, that's right. Wishes do make children."
I love my daughter for reminding me of what's important, and for melting my heart on a regular basis.
Love,
Kristina
I bought two editions of the book. One is the Disney telling...not my favorite, but it's written at Tessa's level, and so I thought it was worthy on that regard. The other book has gorgeous illustrations (really, it's like an art book) and tells the tradiational version, not the Disney version, complete with language like "whenceforth" and "heretofore". Tessa didn't seem to mind the elevated language, though she did interrupt me dozens of times to get clarification on some of the words.
Well, at the beginning of the story, we are introduced to the King and Queen, and informed that they have been barren for three long years, and that they yearned for a child of their own. Tessa, in wisdom and innocence, turned to me and said, "Mommy, do wishes make children?"
I didn't have to think long about how much I had desired this beautiful child in my life, and how joyful I was when I learned that I was to become a mother. This is a much more eloquent explanation than any discussion of the birds and the bees that I could ever imagine...and it's just as true.
"Yes, Tessa, that's right. Wishes do make children."
I love my daughter for reminding me of what's important, and for melting my heart on a regular basis.
Love,
Kristina
Wednesday, February 08, 2006
More hair pics
Here are some pictures taken today. I think that not only is my hair growing, my face is getting slimmer from weight loss. I'll take whatever I can get!
The eyebrows in these pictures are not officially my own. Today, feeling frustrated and unfeminine, I headed to Sephora (a make-up store downtown) and had them give me a makeover, and then I bought a bunch of their products. (In these pictures, I'm not wearing anything on my lips, so just ignore that part.) I'm tired of not feeling feminine, and I'm trying to seize control. Maybe make-up will help!
Love,
Kristina
Tuesday, February 07, 2006
More on plastic surgery
I have been searching the web, and I found some pictures of before and after for breast reconstruction. I'm putting links here - don't look if you don't want to see!
DIEP and GAP reconstruction:
http://www.breastcenter.com/breastrecon/beforeafter-images.html
A variety of reconstructions:
http://www.dallasbreastreconstruction.com/presentation/breast_reconstruction_presentation_files/frame.htm
A walk through of different kinds of reconstruction:
http://www.breastcancer.org/bey_tre_recon_types.html
More pictures of breast reconstruction:
http://www.breastcancer.org/pictures_reconstruction.html
DIEP and GAP reconstruction:
http://www.breastcenter.com/breastrecon/beforeafter-images.html
A variety of reconstructions:
http://www.dallasbreastreconstruction.com/presentation/breast_reconstruction_presentation_files/frame.htm
A walk through of different kinds of reconstruction:
http://www.breastcancer.org/bey_tre_recon_types.html
More pictures of breast reconstruction:
http://www.breastcancer.org/pictures_reconstruction.html
Blisters and surgery
(Now that's a dim title...!)
Today I have added blisters to my list of complaints. They're okay, and I can deal with it, but I have a 4" line of blisters on my chest by my arm. (This is a typical place to have problems, as I can't help my arm or shirt from rubbing against the radiated area.) Yuck. Hopefully not much more will happen to my chest in the next 24 hours because this has gotten really old really quickly. Today I bought some soft tank tops at Target, and I will wear them under my clothes with the hope that they will treat me better than my regular clothes have in this regard.
Today I also met with my surgeon, Dr. Dawson. I have tentatively scheduled my second (and final!) mastectomy for March 20th.
The surgery is tentative because I am getting conflicting information about what type of plastic surgery is best. Dr. Dawson (whom I admire and respect, and has a stellar reputation, and who did fabulous work on my left side doing a mastectomy) thinks that I can do a skin sparing mastectomy on my right side, and then have a plastic surgeon reconstruct it at the same time. This conflicts with what Dr. Welk told me, but since Dr. Welk's bedside manner was imperfect, and since I have a longstanding relationship with Dr. Dawson, I tend to believe what Dr. Dawson is saying. I have an appointment with another plastic surgeon for later this month, and I'm hoping that I will feel more settled with the other plastic surgeon and that I can get my questions answered. Hopefully, I will not have to delay reconstruction on the right side. I think I like being a uniboober better than having no breasts at all.
Side note: It was relatively easy for me to make the appointment for the mastectomy this time. MUCH easier than the first time. The first time, I had a tightness in my chest, a lump in my throat, and tears in my eyes as I learned how the surgeon would remove my breast. It was terrifying, and though I might have had a brave face on, I was awash in fear. This time, I'm resigned. I've done this before, and I know that I can handle it. I don't like it, but I can deal with it. Maybe this is because I no longer worry about losing parts of my femininity; having already lost most of my outward femininity (through mastectomy, hair loss, loss of eyebrows & eyelashes, and weight gain...heck, I don't even have estrogen any more!) I don't value the little bit that I have left nearly as much. On a less negative perspective, though, I also know that it's temporary. Hair grows back, weight can be lost, and breasts can be rebuilt. Just like that, I move from terror to resolve. Amazing. (End of side note.)
I'm very conflicted about what kind of surgery to do on either side. On my right side (non-cancerous) I can choose between a lat flap with implant and a plain implant. The lat flap involves a longer surgery and more difficult recovery, but is supposed to have better results. On my left side, I thought I wanted a DIEP, and then I thought I wanted a TRAM, but now I'm leaning toward the lat flap with implant on that side, too, because it doesn't involve a 12-16" scar on my abdomen and the removal (and replacement) of my belly button. (The scar on my back/side would be about 4", which is a piece of cake by comparison, it seems.)
Sigh. It's really up to me - plastic surgeons all have differing ideas about what is best, and if I was really sold on one of the techniques I could undoubtedly find a plastic surgeon with a good reputation who would agree to it. It's nice to have some control over my destiny, but it's also frightening because I have no idea what the "right" thing to do is and I am sadly lacking in medical credentials.
I'll figure it out.
And one more note...
After all I've been through, doing an MRI shouldn't bother me in the slightest. Well, I have to do another MRI before the surgery, and I'm really bugged by the prospect. The first one, last June when this started, was truly unpleasant for me emotionally, and I don't look forward to a repeat performance. Time to suck it up... again.
Tessa is with my parents, and so Ryan and I are going to go on a cheap date. Hopefully some wine and relaxed conversation will clear my head of all of these thoughts.
Kristina
Today I have added blisters to my list of complaints. They're okay, and I can deal with it, but I have a 4" line of blisters on my chest by my arm. (This is a typical place to have problems, as I can't help my arm or shirt from rubbing against the radiated area.) Yuck. Hopefully not much more will happen to my chest in the next 24 hours because this has gotten really old really quickly. Today I bought some soft tank tops at Target, and I will wear them under my clothes with the hope that they will treat me better than my regular clothes have in this regard.
Today I also met with my surgeon, Dr. Dawson. I have tentatively scheduled my second (and final!) mastectomy for March 20th.
The surgery is tentative because I am getting conflicting information about what type of plastic surgery is best. Dr. Dawson (whom I admire and respect, and has a stellar reputation, and who did fabulous work on my left side doing a mastectomy) thinks that I can do a skin sparing mastectomy on my right side, and then have a plastic surgeon reconstruct it at the same time. This conflicts with what Dr. Welk told me, but since Dr. Welk's bedside manner was imperfect, and since I have a longstanding relationship with Dr. Dawson, I tend to believe what Dr. Dawson is saying. I have an appointment with another plastic surgeon for later this month, and I'm hoping that I will feel more settled with the other plastic surgeon and that I can get my questions answered. Hopefully, I will not have to delay reconstruction on the right side. I think I like being a uniboober better than having no breasts at all.
Side note: It was relatively easy for me to make the appointment for the mastectomy this time. MUCH easier than the first time. The first time, I had a tightness in my chest, a lump in my throat, and tears in my eyes as I learned how the surgeon would remove my breast. It was terrifying, and though I might have had a brave face on, I was awash in fear. This time, I'm resigned. I've done this before, and I know that I can handle it. I don't like it, but I can deal with it. Maybe this is because I no longer worry about losing parts of my femininity; having already lost most of my outward femininity (through mastectomy, hair loss, loss of eyebrows & eyelashes, and weight gain...heck, I don't even have estrogen any more!) I don't value the little bit that I have left nearly as much. On a less negative perspective, though, I also know that it's temporary. Hair grows back, weight can be lost, and breasts can be rebuilt. Just like that, I move from terror to resolve. Amazing. (End of side note.)
I'm very conflicted about what kind of surgery to do on either side. On my right side (non-cancerous) I can choose between a lat flap with implant and a plain implant. The lat flap involves a longer surgery and more difficult recovery, but is supposed to have better results. On my left side, I thought I wanted a DIEP, and then I thought I wanted a TRAM, but now I'm leaning toward the lat flap with implant on that side, too, because it doesn't involve a 12-16" scar on my abdomen and the removal (and replacement) of my belly button. (The scar on my back/side would be about 4", which is a piece of cake by comparison, it seems.)
Sigh. It's really up to me - plastic surgeons all have differing ideas about what is best, and if I was really sold on one of the techniques I could undoubtedly find a plastic surgeon with a good reputation who would agree to it. It's nice to have some control over my destiny, but it's also frightening because I have no idea what the "right" thing to do is and I am sadly lacking in medical credentials.
I'll figure it out.
And one more note...
After all I've been through, doing an MRI shouldn't bother me in the slightest. Well, I have to do another MRI before the surgery, and I'm really bugged by the prospect. The first one, last June when this started, was truly unpleasant for me emotionally, and I don't look forward to a repeat performance. Time to suck it up... again.
Tessa is with my parents, and so Ryan and I are going to go on a cheap date. Hopefully some wine and relaxed conversation will clear my head of all of these thoughts.
Kristina
Monday, February 06, 2006
Good news and then OUCH!
Getting dressed today, I discovered two things:
1. I can fit into some pants I bought at the beginning of the fall, and then outgrew. HURRAH! I'm also wearing a sweater that didn't fit a month ago. Things are improving!
2. As I slathered on Biafine under my arm, I felt something rough move under my fingers. I smoothed away the Biafine to find that my skin has degraded and now there is a piece of skin that completely rubbed away (the rough bit, as it turns out, was the top layer of skin lifting off...!), leaving a raw area underneath. ACK! Now my underarm is tender and I'm not thrilled about it, as you might imagine. I guess I am not immune to this, as I'd hoped.
I started to title this post "good news and bad news" but then I backed up. "Bad news" is something significant, like a recurrance, which I do not have. This is merely a setback, so doesn't qualify as bad news.
Kristina
1. I can fit into some pants I bought at the beginning of the fall, and then outgrew. HURRAH! I'm also wearing a sweater that didn't fit a month ago. Things are improving!
2. As I slathered on Biafine under my arm, I felt something rough move under my fingers. I smoothed away the Biafine to find that my skin has degraded and now there is a piece of skin that completely rubbed away (the rough bit, as it turns out, was the top layer of skin lifting off...!), leaving a raw area underneath. ACK! Now my underarm is tender and I'm not thrilled about it, as you might imagine. I guess I am not immune to this, as I'd hoped.
I started to title this post "good news and bad news" but then I backed up. "Bad news" is something significant, like a recurrance, which I do not have. This is merely a setback, so doesn't qualify as bad news.
Kristina
Sunday, February 05, 2006
A sunny Sunday
Today, for the first time in months, it was gloriously sunny outside. Beautiful! The three of us (with Tessa in the jogging stroller) walked to Starbucks, and then down to Lincoln Park to give Tessa some play time (4.7 miles round trip). We ran into friends at Lincoln Park, and Tessa loved playing and climbing on the play structures, but even more I think that she loved going down to the beach. Ryan gave Tessa some lessons on how to throw rocks into the water, and Tessa and I hunted for seashells together. The sky was blue, there were lots of people, we all got exercise (Tessa walked some of the way), and it was just a great way to spend a morning. If it's sunny tomorrow, I might just do a repeat of the experience because it really felt good.
Now, Artie & Anna are over, and the girls are playing while Ryan & Artie watch the Seahawks (Go Hawks!) in the Superbowl. I put out football foods - chips, salsa & guacamole; BBQ potato chips; beer....and then I heated up some Trader Joe's mini-quiche, crabcakes, and spanokopita. I have looked up the Weight Watchers point values for all of these items, and I must say that I may never eat another potato chip again! Some things (chocolate, bread, cheese, a good steak, pasta) are worth spending lots of points, but for me, potato chips just aren't that thing. I had 3 before I looked up the points and all I can say is thank goodness I didn't eat more!
My thoughts these days drift more and more to diet and exercise, and much less to cancer. I'm tired of cancer. It's taken so much of my energy that I just don't want to deal with it any more. Of course, I am dealing with it, on a daily basis. I still dream about it sometimes, and every time I get out of a chair I feel like a 100 year old arthritic woman because of the joint pain in my legs...and my chest is getting more and more sore and red, so I live with that minute to minute, too. But I don't think about cancer all the time like I did for months, and sometimes an hour passes without me thinking of it.
Anyway, back to diet and exercise...I am a woman possessed! I am just so tired of the downfalls of my body that it feels incredible to whip myself into shape. Every time I stay within my points range I'm proud of myself; I make good eating decisions most of the time because it's important to me. I love walking (though I wish I had more time for it), and I love that my body is registering these changes. I think that the changes are starting to show on the outside (thank heavens I'm back in my pants again....now I can't wait for them to be too big!) but on the inside, I feel like a different person. I don't feel like I'm on a diet, I feel like I'm on a lifestyle change. I really think that I am going to hit my diet & fitness goals, and that in doing so I will have the figure (except breasts!) that I desire. I feel more energetic than I have in ages (though I can't remember the me before cancer any more...what was that like?) and I'm soaking it up.
In the evenings, I am more and more tired. The other night, I got a bad night's sleep and not enough sleep, and the next day felt like a good chemo day (and if you've read this blog then you understand that even a good chemo day is a bad day). I will have to be careful not to lose sleep like that, because I hated how it made me feel.
I am thinking more and more about what the next steps of treatment should be. I am resigned to the idea of another mastectomy in the near future...I feel that I simply need to get it over with. I also think that I'm ready to commit to removing my ovaries, and maybe doing a complete hysterectomy. I'm saddened more than I can say to think that those operations will knock the wind out of my newly-filled sails again, but I try not to focus on that, and instead to just think about the here and now and how to keep my energy with diet & exercise.
Believe it or not, something that I've thought about in terms of diet is that if I'm in the hospital for surgeries, how will I stay on Weight Watchers? I know, that's crazy, and if I'm having operations then WW is the least of my concerns, but it's something I've wondered about. (It's much easier to wonder how to keep losing weight than it is to wonder how the surgeries will feel, or if the cancer is going to recur.)
That's all from me for now - cheers.
Love,
Kristina
Now, Artie & Anna are over, and the girls are playing while Ryan & Artie watch the Seahawks (Go Hawks!) in the Superbowl. I put out football foods - chips, salsa & guacamole; BBQ potato chips; beer....and then I heated up some Trader Joe's mini-quiche, crabcakes, and spanokopita. I have looked up the Weight Watchers point values for all of these items, and I must say that I may never eat another potato chip again! Some things (chocolate, bread, cheese, a good steak, pasta) are worth spending lots of points, but for me, potato chips just aren't that thing. I had 3 before I looked up the points and all I can say is thank goodness I didn't eat more!
My thoughts these days drift more and more to diet and exercise, and much less to cancer. I'm tired of cancer. It's taken so much of my energy that I just don't want to deal with it any more. Of course, I am dealing with it, on a daily basis. I still dream about it sometimes, and every time I get out of a chair I feel like a 100 year old arthritic woman because of the joint pain in my legs...and my chest is getting more and more sore and red, so I live with that minute to minute, too. But I don't think about cancer all the time like I did for months, and sometimes an hour passes without me thinking of it.
Anyway, back to diet and exercise...I am a woman possessed! I am just so tired of the downfalls of my body that it feels incredible to whip myself into shape. Every time I stay within my points range I'm proud of myself; I make good eating decisions most of the time because it's important to me. I love walking (though I wish I had more time for it), and I love that my body is registering these changes. I think that the changes are starting to show on the outside (thank heavens I'm back in my pants again....now I can't wait for them to be too big!) but on the inside, I feel like a different person. I don't feel like I'm on a diet, I feel like I'm on a lifestyle change. I really think that I am going to hit my diet & fitness goals, and that in doing so I will have the figure (except breasts!) that I desire. I feel more energetic than I have in ages (though I can't remember the me before cancer any more...what was that like?) and I'm soaking it up.
In the evenings, I am more and more tired. The other night, I got a bad night's sleep and not enough sleep, and the next day felt like a good chemo day (and if you've read this blog then you understand that even a good chemo day is a bad day). I will have to be careful not to lose sleep like that, because I hated how it made me feel.
I am thinking more and more about what the next steps of treatment should be. I am resigned to the idea of another mastectomy in the near future...I feel that I simply need to get it over with. I also think that I'm ready to commit to removing my ovaries, and maybe doing a complete hysterectomy. I'm saddened more than I can say to think that those operations will knock the wind out of my newly-filled sails again, but I try not to focus on that, and instead to just think about the here and now and how to keep my energy with diet & exercise.
Believe it or not, something that I've thought about in terms of diet is that if I'm in the hospital for surgeries, how will I stay on Weight Watchers? I know, that's crazy, and if I'm having operations then WW is the least of my concerns, but it's something I've wondered about. (It's much easier to wonder how to keep losing weight than it is to wonder how the surgeries will feel, or if the cancer is going to recur.)
That's all from me for now - cheers.
Love,
Kristina
Thursday, February 02, 2006
14.4 pounds lost AND I'm a superhero
Today at my Weight Watchers weigh-in I celebrated another 2.6 pound loss (or was it 2.8?)...anyway, I've lost a total of 14.4 pounds. Only 8 pounds until my pre-chemo weight, and then I can start working on the weight that I should have gotten rid of years ago. I am THRILLED with the rate of loss, as I'd promised myself to be happy if I averaged 1 pound a week of loss...but I've lost all 14.4 in four weeks. I can't wait to see what losses February will bring!
Today at radiation my team looked at my chest, and asked me how I was feeling. I told them that I'm working out regularly and walking 3-6 miles several times a week, and that I get tired in the evenings, but that I feel pretty good. They told me that I was a superhero, because usually by the time that people's chests look like mine, they're exhausted. Well, I certainly don't feel like a superhero, but I'll take all the positive reinforcement that I can get.
My chest is now completely red in the radiated area, with one sort of purple-ish area about 2x2 inches. The whole thing is covered with little sores ranging from pinpoint to the size of the head of a pin (all very small, in other words), and it seems that there are more of these each time I look. I keep slathering on the Biafine and hoping for the best. My chest is now officially tender, and I can't snuggle Tessa on that side any more because it hurts (and my lean daughter's too bony...and too wiggly...for a radiated chest hug). I am almost halfway done, having completed 16 of 33 radiation sessions. I have a feeling that, like chemo, the second half is a lot harder than the first, but I'm trying not to focus on that.
Yesterday I scheduled an appointment with Dr. Dawson, the surgeon who performed my first mastectomy, to talk about performing the second mastectomy. Dr. Welk was very convincing that it is advisable to heal from the mastectomy for at least two months before doing reconstruction, and since I want to do reconstruction in October but I don't want to have a mastectomy close to the 3-Day walk, I think I'm looking at doing it SOON. I will discuss with Dr. Dawson having mastectomy number two in March. Of course I dread this - I'm only human, not superhero after all - but I am willing to do what it takes, and having had cancer in one breast I'm not eager to get it in the other, so it will offer peace of mind.
With love,
Kristina
Today at radiation my team looked at my chest, and asked me how I was feeling. I told them that I'm working out regularly and walking 3-6 miles several times a week, and that I get tired in the evenings, but that I feel pretty good. They told me that I was a superhero, because usually by the time that people's chests look like mine, they're exhausted. Well, I certainly don't feel like a superhero, but I'll take all the positive reinforcement that I can get.
My chest is now completely red in the radiated area, with one sort of purple-ish area about 2x2 inches. The whole thing is covered with little sores ranging from pinpoint to the size of the head of a pin (all very small, in other words), and it seems that there are more of these each time I look. I keep slathering on the Biafine and hoping for the best. My chest is now officially tender, and I can't snuggle Tessa on that side any more because it hurts (and my lean daughter's too bony...and too wiggly...for a radiated chest hug). I am almost halfway done, having completed 16 of 33 radiation sessions. I have a feeling that, like chemo, the second half is a lot harder than the first, but I'm trying not to focus on that.
Yesterday I scheduled an appointment with Dr. Dawson, the surgeon who performed my first mastectomy, to talk about performing the second mastectomy. Dr. Welk was very convincing that it is advisable to heal from the mastectomy for at least two months before doing reconstruction, and since I want to do reconstruction in October but I don't want to have a mastectomy close to the 3-Day walk, I think I'm looking at doing it SOON. I will discuss with Dr. Dawson having mastectomy number two in March. Of course I dread this - I'm only human, not superhero after all - but I am willing to do what it takes, and having had cancer in one breast I'm not eager to get it in the other, so it will offer peace of mind.
With love,
Kristina
Tuesday, January 31, 2006
Plastic Surgery: Breast Reconstruction Options
Today, before my usual radiation appointment, I went to meet with a plastic surgeon, Dr. Welk, for a consultation to discuss my reconstruction options. I came away with very different views than when I entered his office, and I have a lot of thinking to do before making any decisions.
It appears that with continued weight loss (which is worth it to me - I think I've dropped another pound or two this week and I'm determined to keep it up) I will not be a candidate for double reconstruction using my own tissue - there simply won't be enough tummy tissue. That means that I will be getting an implant on my right (non-cancer) side. The best kind of implant that I can get would be a procedure that actually uses skin and muscle from my back, referred to as a "lat flap" (I think it's the latimus dorsi muscle - I have to read more about this). This procedure uses some skin from my back, as well as tissue, to wrap the implant, and thus creates a more normal looking breast. The pictures are impressive.
On my left side, where I've already had a mastectomy, I need to do either the lat flap or a TRAM flap. The TRAM flap involves using abdominal skin and tissue, with a muscle to "feed" the flap coming up from the abdomen. Alternately, I could do a lat flap with implant, the same as on the right side, but the doctor thinks that my best results will occur if I do a TRAM on one side and a lat on the other.
I went in all gung-ho about doing the DIEP, which is like a TRAM only doesn't use muscle, but the doctor essentially talked me out of it, and gave me some very compelling reasons why it isn't a superior technique: the results are the same, but the risks are much higher for the DIEP.
The doctor also told me that it is less advisable to do the mastectomy at the time of reconstruction. Damn. He gave statistics about rate of failure that convinced me that it would be best to do the mastectomy, wait two months, and then do the reconstruction on that side. Sigh. All this surgery certainly bums me out.
I will not do any kind of reconstruction until October, as I need to be fit and healthy on the 3-Day walk in August, and then I want to enjoy the beautiful September weather. That's the plan at the moment, anyway.
It's so much to take in. These surgeries are very invasive (though the doctor disagrees with the term "invasive" I say that anything that leaves me covered in scars and moves my muscles around is invasive) - I would end up not only with Frankenbreasts (which certainly would be better than no breasts at all) but also with a foot long (no exaggeration) scar along my belly and another on my back.
Lots to think about.
Kristina
PS Yesterday's radiation was cancelled because all the computers at Swedish were down, so my new end date is Feb. 28. My skin is getting redder, and there are little dots that look like sores all over the radiated area. They're tiny, but they're a sign of things to come, I think.
It appears that with continued weight loss (which is worth it to me - I think I've dropped another pound or two this week and I'm determined to keep it up) I will not be a candidate for double reconstruction using my own tissue - there simply won't be enough tummy tissue. That means that I will be getting an implant on my right (non-cancer) side. The best kind of implant that I can get would be a procedure that actually uses skin and muscle from my back, referred to as a "lat flap" (I think it's the latimus dorsi muscle - I have to read more about this). This procedure uses some skin from my back, as well as tissue, to wrap the implant, and thus creates a more normal looking breast. The pictures are impressive.
On my left side, where I've already had a mastectomy, I need to do either the lat flap or a TRAM flap. The TRAM flap involves using abdominal skin and tissue, with a muscle to "feed" the flap coming up from the abdomen. Alternately, I could do a lat flap with implant, the same as on the right side, but the doctor thinks that my best results will occur if I do a TRAM on one side and a lat on the other.
I went in all gung-ho about doing the DIEP, which is like a TRAM only doesn't use muscle, but the doctor essentially talked me out of it, and gave me some very compelling reasons why it isn't a superior technique: the results are the same, but the risks are much higher for the DIEP.
The doctor also told me that it is less advisable to do the mastectomy at the time of reconstruction. Damn. He gave statistics about rate of failure that convinced me that it would be best to do the mastectomy, wait two months, and then do the reconstruction on that side. Sigh. All this surgery certainly bums me out.
I will not do any kind of reconstruction until October, as I need to be fit and healthy on the 3-Day walk in August, and then I want to enjoy the beautiful September weather. That's the plan at the moment, anyway.
It's so much to take in. These surgeries are very invasive (though the doctor disagrees with the term "invasive" I say that anything that leaves me covered in scars and moves my muscles around is invasive) - I would end up not only with Frankenbreasts (which certainly would be better than no breasts at all) but also with a foot long (no exaggeration) scar along my belly and another on my back.
Lots to think about.
Kristina
PS Yesterday's radiation was cancelled because all the computers at Swedish were down, so my new end date is Feb. 28. My skin is getting redder, and there are little dots that look like sores all over the radiated area. They're tiny, but they're a sign of things to come, I think.
Saturday, January 28, 2006
Breaking Eyelash News
Today, I looked in the mirror, and there, in plain view, were little microscopic eyelashes! HURRAH! Hopefully this is the beginning of something beautiful. I have missed my eyebrows and eyelashes even more than my hair, I think.
In less happy news, my lymphedema is flaring up, and my left index finger is 1.5 times as fat as the index finger on my right hand, and it aches. I did the manual lymphatic massage this morning, and I'll get on that a couple times a day now...I don't want this to get worse, and radiation can exacerbate it.
Love,
Kristina
In less happy news, my lymphedema is flaring up, and my left index finger is 1.5 times as fat as the index finger on my right hand, and it aches. I did the manual lymphatic massage this morning, and I'll get on that a couple times a day now...I don't want this to get worse, and radiation can exacerbate it.
Love,
Kristina
Friday, January 27, 2006
Radiation update
I had another appointment with Dr. Morris today to discuss my radiation plan. My skin is noticeably pink and red and tanned now, and has become sensitive to the touch. As of today, I can no longer wear any sort of bra because the band rubs on my skin. This bums me out because this means that I can't wear a prosthesis, and so all of my clothes fit strangely and in order to disguise the braless breast I need to wear looser clothes than I like to wear, and it's very de-feminizing. I have had enough de-feminizing, but it appears that there is no end in sight. More practically, it also bums me out because it's uncomfortable to work out without a bra - I jogged a bit today and that didn't go well at all!
Dr. Morris has been doing research on healthy BMIs and weight loss and exercise as they relate to cancer patients, and she is VERY happy with all I'm doing to be fit and slim and healthy. She told me that I will probably get some fatigue soon, and that it is best if I push on through and keep exercising and avoid taking naps, as being active will help fight the fatigue. I'm doing all that I can! Today's walk was short (under two miles) because the kids (I walk oftentimes with Michele & Elliott, in addition to pushing Tessa in the stroller) were fussy and because it started hailing...and I just didn't have the commitment to keep going in the hail. Oh well, better luck tomorrow (or Sunday, when I plan to do a 6 mile walk for the first time since starting all this).
I have stayed close to my daily points for Weight Watchers in the past couple of days, and I'm excited by that, too. Tonight I made a ginger-BBQ sauce on broiled salmon, and it was delicious...definately didn't feel like I was on a diet.
Love to all,
Kristina
Dr. Morris has been doing research on healthy BMIs and weight loss and exercise as they relate to cancer patients, and she is VERY happy with all I'm doing to be fit and slim and healthy. She told me that I will probably get some fatigue soon, and that it is best if I push on through and keep exercising and avoid taking naps, as being active will help fight the fatigue. I'm doing all that I can! Today's walk was short (under two miles) because the kids (I walk oftentimes with Michele & Elliott, in addition to pushing Tessa in the stroller) were fussy and because it started hailing...and I just didn't have the commitment to keep going in the hail. Oh well, better luck tomorrow (or Sunday, when I plan to do a 6 mile walk for the first time since starting all this).
I have stayed close to my daily points for Weight Watchers in the past couple of days, and I'm excited by that, too. Tonight I made a ginger-BBQ sauce on broiled salmon, and it was delicious...definately didn't feel like I was on a diet.
Love to all,
Kristina
11.8 pounds lost!
I forgot to update this yesterday (I was too busy going for a walk and attending radiation, oncologist, and Herceptin appointments before having dinner guests) but at my weigh in yesterday I was down a total of 11.8 pounds. Hurrah for me! Weight Watchers works, and I'm so glad. I am being vigilant about staying on track, and I'm delighted that it's paying off.
Kristina
Kristina
Tuesday, January 24, 2006
More hair photos - six weeks post chemo
Wow - I think that my hair is actually growing! I can see a difference from the pictures a couple of weeks ago. Now, if it would only grow down past my shoulders by the weekend....!
This and that
I have been training for the 3-Day Walk, and though my muscles ache it feels great. Last week I walked for 12 miles (three days, four miles per day), which is my best exercise week since treatment started. I have a lot of incentive to walk because I want to be prepared for the 3-Day, because I want to lose weight, and because I want to be a good role model for Tessa, but today I receive this information:
http://www.breastcancer.org/research_diet_072705a.html
...which gives me some great information about reduced rate of recurrance and death for women who exercise 3-5 hours per week. I have chosen very aggressive treatment plans, some of which only reduce my risk of recurrance by a couple of percentage points (radiation is one of these), so even the small drop in risk of recurrance through exercise is substantial. I have a long, long way to go, but I'm working on it and doing my best! (This is a reminder to myself that I should work out tomorrow. I meant to today, but did chores instead. Tomorrow, I walk!)
And in other thoughts...
Tessa has entered the age of three with a vengeance. I've heard from other mothers that three is a difficult age for many kids, and Tessa is proving no exception. We have had some impressive temper tantrums lately - yikes! Fortunately, her sweet moments are sweeter than ever, so that keeps me sane when I'm thinking that I'll lose my mind from the latest tantrum.
Funny moments from Tessa:
- The other day, as we were reading, Tessa asked, "Mommy, why do you slobber on the book?" It took me a moment to realize what on earth she was talking about, until she pointed out that I had licked my finger a bit before turning the page because the pages were stuck. I swear I didn't slobber, but she sure had me laughing.
- As we left Tessa's pony-party, Tessa got very concerned and cried out, "Oh, no! We forgot! We have to go back!" It took us a bit to realize that she thought that she got to KEEP the pony. OOPS! Sorry, kiddo, no backyard ponies for us!
- Auntie Rene' and Uncle Mel gave Tessa some birthday money to go buy herself something. We went to the toy section at Target and picked out two toys, and then we went to the check-out to purchase them. Proudly, Tessa handed the cashier the money, and the cashier bagged the toys and handed us a receipt. As we walked away, Tessa got very upset, and yelled, "I want my money back!" I guess she mostly sees debit cards - which are, indeed, returned - and she was very startled that the lady took her money. This was very amusing until it turned into a full temper tantrum, complete with screaming and stamping of feet. Anyway, the cashier seemed amused...phew!
Tomorrow I am making Dr. Rinn a full dinner and bringing it to her office. She's a busy woman and has two small children, and doesn't get to cook very often (by her own admission). I have really wanted to thank her for her excellent treatment, but it's been hard to know what to get her. Well, I decided that a full dinner was the ticket. I'm making shrimp creole, rice, salad, broccoli, and brownies, and I'm sending them along with a bottle of wine and some fresh bread. It's not much to say "Thank you for helping to save my life," but it's a start. I adore Dr. Rinn and I hope that she understands how her kindness, as well as her professionalism and knowledge, have permanently left their mark on me.
On Thursday I have a number of appointments again - Dr. Rinn follow up (during which I need to ask about the horrible aches I have in my joints, which are likely side effects of Taxol but actually make me dream of pain and keep me up sometimes) and another infusion of Herceptin, in addition to radiation. The Herceptin takes a full hour, which is a pain, but c'est la vie. (Herceptin has been shown to reduce the rate of recurrance for my kind of cancer by 52%. That is mighty impressive, and I'll take it!) I have upcoming appointments to talk to an oncology gynecologist, and a plastic surgeon, and to get fitted for the lymphedema sleeve, as well. I am still Cancer Patient.
I have completed 10 of my 33 radiation appointments. So far, I'm just a bit pink/tanned on that part of my chest. I get tired, but I feel 1000% better than I did during chemo, so I'm not complaining about that yet.
Slowly, I'm trying to return to my normal life. This is a week of birthday parties (mostly for Tessa's PEPS group - the birthdays are all close together) and doing chores around the house. Today I donated another batch of "cancer books" to the Swedish Cancer Institute library, for other patients to use. I want to move on.
I must get to bed. Good night, all!
Kristina
http://www.breastcancer.org/research_diet_072705a.html
...which gives me some great information about reduced rate of recurrance and death for women who exercise 3-5 hours per week. I have chosen very aggressive treatment plans, some of which only reduce my risk of recurrance by a couple of percentage points (radiation is one of these), so even the small drop in risk of recurrance through exercise is substantial. I have a long, long way to go, but I'm working on it and doing my best! (This is a reminder to myself that I should work out tomorrow. I meant to today, but did chores instead. Tomorrow, I walk!)
And in other thoughts...
Tessa has entered the age of three with a vengeance. I've heard from other mothers that three is a difficult age for many kids, and Tessa is proving no exception. We have had some impressive temper tantrums lately - yikes! Fortunately, her sweet moments are sweeter than ever, so that keeps me sane when I'm thinking that I'll lose my mind from the latest tantrum.
Funny moments from Tessa:
- The other day, as we were reading, Tessa asked, "Mommy, why do you slobber on the book?" It took me a moment to realize what on earth she was talking about, until she pointed out that I had licked my finger a bit before turning the page because the pages were stuck. I swear I didn't slobber, but she sure had me laughing.
- As we left Tessa's pony-party, Tessa got very concerned and cried out, "Oh, no! We forgot! We have to go back!" It took us a bit to realize that she thought that she got to KEEP the pony. OOPS! Sorry, kiddo, no backyard ponies for us!
- Auntie Rene' and Uncle Mel gave Tessa some birthday money to go buy herself something. We went to the toy section at Target and picked out two toys, and then we went to the check-out to purchase them. Proudly, Tessa handed the cashier the money, and the cashier bagged the toys and handed us a receipt. As we walked away, Tessa got very upset, and yelled, "I want my money back!" I guess she mostly sees debit cards - which are, indeed, returned - and she was very startled that the lady took her money. This was very amusing until it turned into a full temper tantrum, complete with screaming and stamping of feet. Anyway, the cashier seemed amused...phew!
Tomorrow I am making Dr. Rinn a full dinner and bringing it to her office. She's a busy woman and has two small children, and doesn't get to cook very often (by her own admission). I have really wanted to thank her for her excellent treatment, but it's been hard to know what to get her. Well, I decided that a full dinner was the ticket. I'm making shrimp creole, rice, salad, broccoli, and brownies, and I'm sending them along with a bottle of wine and some fresh bread. It's not much to say "Thank you for helping to save my life," but it's a start. I adore Dr. Rinn and I hope that she understands how her kindness, as well as her professionalism and knowledge, have permanently left their mark on me.
On Thursday I have a number of appointments again - Dr. Rinn follow up (during which I need to ask about the horrible aches I have in my joints, which are likely side effects of Taxol but actually make me dream of pain and keep me up sometimes) and another infusion of Herceptin, in addition to radiation. The Herceptin takes a full hour, which is a pain, but c'est la vie. (Herceptin has been shown to reduce the rate of recurrance for my kind of cancer by 52%. That is mighty impressive, and I'll take it!) I have upcoming appointments to talk to an oncology gynecologist, and a plastic surgeon, and to get fitted for the lymphedema sleeve, as well. I am still Cancer Patient.
I have completed 10 of my 33 radiation appointments. So far, I'm just a bit pink/tanned on that part of my chest. I get tired, but I feel 1000% better than I did during chemo, so I'm not complaining about that yet.
Slowly, I'm trying to return to my normal life. This is a week of birthday parties (mostly for Tessa's PEPS group - the birthdays are all close together) and doing chores around the house. Today I donated another batch of "cancer books" to the Swedish Cancer Institute library, for other patients to use. I want to move on.
I must get to bed. Good night, all!
Kristina
Monday, January 23, 2006
Tessa's 3rd Birthday
Is it possible that I have been a mother for three years? And how is it possible that my tiny baby girl has grown to be such a big girl? I'm more proud of her than I imagined possible - she is all that I ever dreamed of in a child, and I love her more with each passing day.
Here are a few pictures of her third birthday to delight and entertain you. She had a pony party - hurrah! My pony obsessed daughter loved every second of it, and we were blessed to share it with a few close friends. Then, today, we had a small family party hosted by Grammy & Grandpa (thank you!)...I think it was a perfect third birthday.
I love you, Tessa Katherine!
Love,
Kristina
PS 9 radiation down, 24 to go. I hate the way it takes a big chunk of time out of every day, and the way it makes me feel like a cancer patient...but it's okay.
PPS I've been having bad dreams lately, and perhaps they tell me that I am not as confident as I'd like to believe. My first bad dream involved me getting cancer in my legs, and "they" decided to amputate. I was okay with that, but they started sawing off my legs without giving me any anesthetic, and I pleaded with them to stop but they said, "You have a high pain tolerance. You can take it." The second dream was that my blood counts had jumped, and some cancer marker that was supposed to be 2 had jumped to 273. In the dream, I knew that I was dying, and the doctors told me that they were sorry, but there was nothing they could do. Freud could have a heyday with dreams like these.
Wednesday, January 18, 2006
Weight Watchers Report
Week two, and I lost 1.6 pounds. I'm now down 9 pounds from my start weight - hurrah!
Hope
Today Susan from Boston emailed me to say that radiation isn't a straight line in terms of fatigue - that I might have two tired days followed by a week of energetic ones. This is the best possible news! Thank you, Susan, for giving me back some hope.
Here's a tidbit to make you laugh: Last night, as I went to put on my prescription Biofine cream (which should help with the skin degradation caused by radiation - I use it 3x/day), I noticed a minty smell. Yes, that's right folks, I was rubbing Tom's of Maine spearmint toothpaste all over my radiated chest. ACK! I quickly washed it off and replaced it with the intended product. I'm guessing that Tom's of Maine will not help my skin, but I guess we'll find out.
Today my radiated skin is pink, and I can see the exact outline of the radiated area. I've been at it for a week, and I had heard that at this point in treatment a lot of people have real skin problems, so I feel good about where I'm at. (And I have no idea if it's pink because I rubbed toothpaste on it last night, or because of the radiation. Time will tell!)
Kristina
Here's a tidbit to make you laugh: Last night, as I went to put on my prescription Biofine cream (which should help with the skin degradation caused by radiation - I use it 3x/day), I noticed a minty smell. Yes, that's right folks, I was rubbing Tom's of Maine spearmint toothpaste all over my radiated chest. ACK! I quickly washed it off and replaced it with the intended product. I'm guessing that Tom's of Maine will not help my skin, but I guess we'll find out.
Today my radiated skin is pink, and I can see the exact outline of the radiated area. I've been at it for a week, and I had heard that at this point in treatment a lot of people have real skin problems, so I feel good about where I'm at. (And I have no idea if it's pink because I rubbed toothpaste on it last night, or because of the radiation. Time will tell!)
Kristina
Tuesday, January 17, 2006
Noooooooooooo........
I am tired. **** it. I can't tell if it's the radiation or stress about finances and jobs, but I'm tired. For the past two days I've been a wreck after radiation, and it's taken all the energy I can muster to keep going. There is a PAC meeting for preschool tonight and I can't go (I don't feel too bad about this because I told them I needed to figure out how radiation was going before I could commit) because I'm not up to it - it starts in a 1/2 hour and in a 1/2 hour I will be in bed.
**** it.
**** it.
Sunday, January 15, 2006
Radiation
I have hesitated to write much about radiation because, as I have mentioned, I don't really want to think about it. The radiation itself isn't so bad, but the fact that I am, once again, a Cancer Patient, truly stinks. When do I get to be Kristina, and not Cancer Patient?
But back to radiation:
The routine is very simple. I show up, and walk straight back to the change rooms, where I strip everything from the waist up and put on an oh-so-ugly gown that ties in the front. Then, I wait alongside other similarly clad people (although some people have to take off their pants and put on hospital-style pants instead of a gown, which leads me to speculate who has what type of cancer) for one of the technicians to come and get me.
I have a team of several people who do my radiation. Jude and Luz are there every day, and I like them both - Jude has a sparkle in his eyes and is quick to make a joke, but he's also incredibly kind and gentled; Luz exudes calm and patience and makes me immediately feel cared for - and then there is usually one, sometimes two, other people who work with them. I undo my gown and slip my left arm out of the sleeve, exposing my chest where the breast used to be, and I lie down on the thin "bed" of the radiation machine (I say "bed" in quotes because it's a thin, uncomfortable plank, really, not even as comfortable as a stretcher) with my left arm held above my head. My team surrounds me, and through a combination of moving the machine and moving me (it's my job to lay stone still, and not "help" by moving myself as they move me, because their movements are often only a couple of millimeters and I'm likely to over-correct if I "help") they line me up. I have two small tattoos - one on my breastbone and one under my left arm - that help them line me up, and I also have two stickers with marks on them in the middle of my chest (one of which is clearly visible when I wear a V or scoop neck - it's pretty high up) that they use to align me. Additionally, each day they draw on me with markers, outlining the radiation area. After I'm lined up, they place a sort of cover on the area to be radiated (it has an official name which I've already forgotten, but the techs refer to it as "the waffle" because of it's waffled appearance) that brings the radiation up higher on my skin (do I have this right?).
When I am suitably marked in ink and lined up under the machine, which takes a few minutes as precision is everything, the technicians throw me a kind word and then leave the room. They watch me on video camera, as there are 10 inch thick lead doors between me and them to protect them as I am radiated. (This does not make me feel confident or secure, let me tell you.) The machine begins to hum, and there is a red light mounted on the wall that flashes a warning while I am radiated. The red light seems like a dire warning, like an air raid siren with lights perhaps, and it makes me nervous. I lay there, exposed, red light flashing and radiation machine whirring. Then the techs come in, reposition the waffle and some parts of the machine, and repeat the process two more times, radiating slightly different areas each time. (My breastbone receives radation, but it's only superficial compared to the rest of my chest, for example, so the machine is positioned differently with a special attachment.)
After a few minutes, it's done, and I can lower my aching left arm, jump down off the machine (which I like to do because it's a way of saying "I'm not a sick person! I can get down without help!" but which makes the techs nervous, as if a six inch jump is somehow going to make me hurt myself), re-tie my gown, and walk back through the waiting room to get dressed in the dressing room. I throw my gown in the hamper, grab my purse, and walk back to my car. Done.
Except Fridays, when I also see the doctor (radiation oncologist) to talk about my progress.
As yet, I have no idea if I feel fatigue. If I DO feel fatigue, I fully intend to ignore it as long as possible, but right now I don't think that I do. (And I'm happy in denial, thank you very much.) I do not yet have any signs of redness or pain on my chest, though these are expected eventually. I have a prescription cream that I rub on my chest three times a day, and I am only wearing cotton next to my skin, and no more underwire bras or anything that might rub, in order to keep skin integrity. I've heard plenty of stories and seen some examples of radiated skin, and it's not pretty. Mostly, I don't let myself think about it.
While in radiation, I am not allowed to wear deoderant or shave under my left arm. (So that's what you smelled!) I am also not allowed to take hot baths, or allow particularly hot or cold water next to my skin, and I'm to avoid pools and sunshine (not hard at this time of year) until about a month after treatment (at which point my skin should have healed). The theory is that I'm lucky that I had a mastectomy, because I don't have much sensation (the nerves were all cut) on my left chest where I'm being radiatated, so the burns that will occur shouldn't hurt too much. I certainly hope that's true!
Three treatments down, thirty to go.
Love,
Kristina
But back to radiation:
The routine is very simple. I show up, and walk straight back to the change rooms, where I strip everything from the waist up and put on an oh-so-ugly gown that ties in the front. Then, I wait alongside other similarly clad people (although some people have to take off their pants and put on hospital-style pants instead of a gown, which leads me to speculate who has what type of cancer) for one of the technicians to come and get me.
I have a team of several people who do my radiation. Jude and Luz are there every day, and I like them both - Jude has a sparkle in his eyes and is quick to make a joke, but he's also incredibly kind and gentled; Luz exudes calm and patience and makes me immediately feel cared for - and then there is usually one, sometimes two, other people who work with them. I undo my gown and slip my left arm out of the sleeve, exposing my chest where the breast used to be, and I lie down on the thin "bed" of the radiation machine (I say "bed" in quotes because it's a thin, uncomfortable plank, really, not even as comfortable as a stretcher) with my left arm held above my head. My team surrounds me, and through a combination of moving the machine and moving me (it's my job to lay stone still, and not "help" by moving myself as they move me, because their movements are often only a couple of millimeters and I'm likely to over-correct if I "help") they line me up. I have two small tattoos - one on my breastbone and one under my left arm - that help them line me up, and I also have two stickers with marks on them in the middle of my chest (one of which is clearly visible when I wear a V or scoop neck - it's pretty high up) that they use to align me. Additionally, each day they draw on me with markers, outlining the radiation area. After I'm lined up, they place a sort of cover on the area to be radiated (it has an official name which I've already forgotten, but the techs refer to it as "the waffle" because of it's waffled appearance) that brings the radiation up higher on my skin (do I have this right?).
When I am suitably marked in ink and lined up under the machine, which takes a few minutes as precision is everything, the technicians throw me a kind word and then leave the room. They watch me on video camera, as there are 10 inch thick lead doors between me and them to protect them as I am radiated. (This does not make me feel confident or secure, let me tell you.) The machine begins to hum, and there is a red light mounted on the wall that flashes a warning while I am radiated. The red light seems like a dire warning, like an air raid siren with lights perhaps, and it makes me nervous. I lay there, exposed, red light flashing and radiation machine whirring. Then the techs come in, reposition the waffle and some parts of the machine, and repeat the process two more times, radiating slightly different areas each time. (My breastbone receives radation, but it's only superficial compared to the rest of my chest, for example, so the machine is positioned differently with a special attachment.)
After a few minutes, it's done, and I can lower my aching left arm, jump down off the machine (which I like to do because it's a way of saying "I'm not a sick person! I can get down without help!" but which makes the techs nervous, as if a six inch jump is somehow going to make me hurt myself), re-tie my gown, and walk back through the waiting room to get dressed in the dressing room. I throw my gown in the hamper, grab my purse, and walk back to my car. Done.
Except Fridays, when I also see the doctor (radiation oncologist) to talk about my progress.
As yet, I have no idea if I feel fatigue. If I DO feel fatigue, I fully intend to ignore it as long as possible, but right now I don't think that I do. (And I'm happy in denial, thank you very much.) I do not yet have any signs of redness or pain on my chest, though these are expected eventually. I have a prescription cream that I rub on my chest three times a day, and I am only wearing cotton next to my skin, and no more underwire bras or anything that might rub, in order to keep skin integrity. I've heard plenty of stories and seen some examples of radiated skin, and it's not pretty. Mostly, I don't let myself think about it.
While in radiation, I am not allowed to wear deoderant or shave under my left arm. (So that's what you smelled!) I am also not allowed to take hot baths, or allow particularly hot or cold water next to my skin, and I'm to avoid pools and sunshine (not hard at this time of year) until about a month after treatment (at which point my skin should have healed). The theory is that I'm lucky that I had a mastectomy, because I don't have much sensation (the nerves were all cut) on my left chest where I'm being radiatated, so the burns that will occur shouldn't hurt too much. I certainly hope that's true!
Three treatments down, thirty to go.
Love,
Kristina
Catch up
I am in a constant state of catch up right now. It seems that over the past six months, breast cancer has ruled my life, and with breast cancer as my leader everything else has fallen apart, including my body, my house, my stack of books to read, my return of phone calls and email, and the always-present to do list. After surgery and chemo, I didn't have the heart to face any of these things, and now I'm scrambling to catch up on all seven months worth of life.
I am, of course, bitter and resentful about how much the breast cancer stole from the last seven months of my life. How could it be otherwise? I'm angry about the negative changes in my body (including the fact that I gained 22 pounds over the course of chemo), angry that I haven't had the energy to care for my house, angry that I haven't been able to play at the park with my daughter, angry at how breast cancer impacted my husband. But right now, I just don't have the energy to focus on how angry I am, because I am too busy playing catch up.
Of course, one big thing I'm trying to take care of is catching up with my body's changes and improving upon the situation. I'm thrilled with last week's weight loss of seven pounds, and I have been on track this week, as well. (I don't expect another huge loss this week because it's not reasonable to think that my body can keep up such an unhealthy rate of loss, but I do hope for a slow and steady loss.) Taking control in this way feels fabulous, as I've said, and it's one way to wind back the clock and make things more like they were.
Related to the above, I've also returned to cooking for myself and my family. I really couldnt' have survived without all of the incredible meals that friends and family made me, and I'm eternally grateful for their sustanance and the love with which the meals were made. Of course, though, I am simply grateful to be in a position to take care of myself again. I've been trying out new recipes (this weekend I made chicken with pears and cranberries, and shrimp creole, and both recipes were fabulous) and stocking my fridge again, and this feels like a way of normalizing our lives once again.
I've also been trying to catch up with friends. (If I haven't called you yet, don't worry, I will!) I just didn't have the energy to return the phone calls I received, and now I'm anxious to reconnect with people. This weekend we had the Savas and Gray families over for dinner, and it was great to watch the girls (between the three families we have five girls!) play together and to attempt adult conversation over the din of the girls' playing. It's a change from the past seven months that I was the hostess, and not the guest, and I am appreciative of being able to play that role again.
I've also returned to my role as a preschool mom. I'm a member of the PAC committee, I'm back to attending meetings, and I'm attending classes with Tessa. This is such a mark of normalcy that it makes me want to weep with joy. I'm not the absent cancer mom, I'm present. Hallelujah!
I've also been enjoying time returning to bookclub, spending a weekend downtown with Susan with barely a care in the world (so fun!), shopping with Michele, planning Tessa's birthday, going to the park, having a zillion playdates, and being awake enough to talk to Ryan in the evenings. I'm ready to start trading babysitting with other parents (instead of just using friends and not reciprocating), and to make meals for my friends who are about to have babies.
I've donated a stack of cancer related books to the Swedish library, and one of my wigs and a handful of hats has gone there as well. My bedside table has a book on Positive Discipline for Preschoolers, my latest bookclub book, and a whole stack of New Yorkers that I'm dying to catch up on...and not cancer stuff.
I'm planning more fundraisers for the 3-Day walk, and I'm trying to get walks in where I can (difficult not because of my physical condition, but because we're trying to set a record for most number of days straight of rain).
It's busy, and I love it. I don't take a minute to ask myself if I'm tired, because I don't want to know the answer. I dont want to be tired, not like that, ever again. Maybe if I run fast enough, I can outrun the fatigue of radiation.
Kristina
I am, of course, bitter and resentful about how much the breast cancer stole from the last seven months of my life. How could it be otherwise? I'm angry about the negative changes in my body (including the fact that I gained 22 pounds over the course of chemo), angry that I haven't had the energy to care for my house, angry that I haven't been able to play at the park with my daughter, angry at how breast cancer impacted my husband. But right now, I just don't have the energy to focus on how angry I am, because I am too busy playing catch up.
Of course, one big thing I'm trying to take care of is catching up with my body's changes and improving upon the situation. I'm thrilled with last week's weight loss of seven pounds, and I have been on track this week, as well. (I don't expect another huge loss this week because it's not reasonable to think that my body can keep up such an unhealthy rate of loss, but I do hope for a slow and steady loss.) Taking control in this way feels fabulous, as I've said, and it's one way to wind back the clock and make things more like they were.
Related to the above, I've also returned to cooking for myself and my family. I really couldnt' have survived without all of the incredible meals that friends and family made me, and I'm eternally grateful for their sustanance and the love with which the meals were made. Of course, though, I am simply grateful to be in a position to take care of myself again. I've been trying out new recipes (this weekend I made chicken with pears and cranberries, and shrimp creole, and both recipes were fabulous) and stocking my fridge again, and this feels like a way of normalizing our lives once again.
I've also been trying to catch up with friends. (If I haven't called you yet, don't worry, I will!) I just didn't have the energy to return the phone calls I received, and now I'm anxious to reconnect with people. This weekend we had the Savas and Gray families over for dinner, and it was great to watch the girls (between the three families we have five girls!) play together and to attempt adult conversation over the din of the girls' playing. It's a change from the past seven months that I was the hostess, and not the guest, and I am appreciative of being able to play that role again.
I've also returned to my role as a preschool mom. I'm a member of the PAC committee, I'm back to attending meetings, and I'm attending classes with Tessa. This is such a mark of normalcy that it makes me want to weep with joy. I'm not the absent cancer mom, I'm present. Hallelujah!
I've also been enjoying time returning to bookclub, spending a weekend downtown with Susan with barely a care in the world (so fun!), shopping with Michele, planning Tessa's birthday, going to the park, having a zillion playdates, and being awake enough to talk to Ryan in the evenings. I'm ready to start trading babysitting with other parents (instead of just using friends and not reciprocating), and to make meals for my friends who are about to have babies.
I've donated a stack of cancer related books to the Swedish library, and one of my wigs and a handful of hats has gone there as well. My bedside table has a book on Positive Discipline for Preschoolers, my latest bookclub book, and a whole stack of New Yorkers that I'm dying to catch up on...and not cancer stuff.
I'm planning more fundraisers for the 3-Day walk, and I'm trying to get walks in where I can (difficult not because of my physical condition, but because we're trying to set a record for most number of days straight of rain).
It's busy, and I love it. I don't take a minute to ask myself if I'm tired, because I don't want to know the answer. I dont want to be tired, not like that, ever again. Maybe if I run fast enough, I can outrun the fatigue of radiation.
Kristina
Wednesday, January 11, 2006
Taking control
Today I had my first weekly weigh in at Weight Watchers since I started doing the program. I have lost (drumroll, please) just over seven pounds! Of course, I'm delighted by this loss, though I wish I felt it more...it's a sign of how much I need to lose that seven pounds doesn't immediately make me look slimmer. In any case, I'm thrilled with my first week. I've shown amazing willpower towards food, but more importantly (to me) I am re-learning some eating habits and making better food choices. I'm looking at food on a weekly basis, and planning for "downfall" events like parties where I know there will be high-cal food, and as such I'm planning for success. (I know, for example, that if I want to go out for dinner on Saturday and not worry about what I'm going to order, then I should show restraint in my choices on the days leading up to Saturday, so that I can enjoy my treats on Saturday but not put on weight. This might seem pretty obvious to some people, but it wasn't obvious to me, and it's a huge "aha!" moment for me.)
One thing that I like about the WW plan is that I can still have treats - it's just about making choices. Today I had super healthy food all day, and that means that tonight I am enjoying a glass of wine. Any diet that allows a glass of wine makes sense to me! (I'm also eating more fruits and veggies than ever, however, as they have low points and fill me up if I'm hungry.)
Anyway, I'm taking control of what I can control. I can't make my hair grow, and I can't make treatment easier, but I can control what I eat and make healthy choices. I do not intend to beat breast cancer only to be taken down by heart disease...I intend to be healthy. Period.
All this thinking about food is also a way to avoid thinking about radiation. I completed my first true radiation today (number 2 of 34 appointments...number 1 of 33 treatments). It was fine. The people are nice. It doesn't hurt. I still don't want to do it. There's not much more to say about it than that, I think. I'll report on it later when I'm more in the mood.
Love,
Kristina
One thing that I like about the WW plan is that I can still have treats - it's just about making choices. Today I had super healthy food all day, and that means that tonight I am enjoying a glass of wine. Any diet that allows a glass of wine makes sense to me! (I'm also eating more fruits and veggies than ever, however, as they have low points and fill me up if I'm hungry.)
Anyway, I'm taking control of what I can control. I can't make my hair grow, and I can't make treatment easier, but I can control what I eat and make healthy choices. I do not intend to beat breast cancer only to be taken down by heart disease...I intend to be healthy. Period.
All this thinking about food is also a way to avoid thinking about radiation. I completed my first true radiation today (number 2 of 34 appointments...number 1 of 33 treatments). It was fine. The people are nice. It doesn't hurt. I still don't want to do it. There's not much more to say about it than that, I think. I'll report on it later when I'm more in the mood.
Love,
Kristina
Tuesday, January 10, 2006
Pictures 4 weeks after chemo
Here are two pictures of my "bald" head, taken on Sunday. My duck fuzz is getting thicker and longer, though my scalp is still visible. I've taken to going out sans hat or scarf because I can't be bothered any more, and I have just enough fuzz to keep my head warm when I'm indoors. It's still pretty awful, as hair goes, but it's an improvement.
1 down, 33 to go
Today I showed up for the first of 34 radiation appointments. I have so many thoughts swimming in my head that I can barely sort them all out, but here is a start.
Perhaps some of you will remember that at my first meeting with Dr. Rinn, my oncologist, Ryan and I met a couple in the lobby who were dressed in black, Goth clothing. They were kind to us, and the woman was particularly helpful to me as she told me about chemo and tried to help me to believe that it wasn't going to be as bad as I expected; she truly helped to alleviate some of my fears. Anyway, today I saw her again for the first time. I walked right by, and then thought better of it, turned around, and approached her. I told her that she probably didn't remember me, but that I'd met her on my first day of chemo, and that I was truly grateful to her for helping me so much. She hugged me and told me that she was glad I'd stopped to tell her, and that I made it somehow worthwhile for her that she'd been able to help me. She told me that she'd been having a rough day, and that I had brought a smile to her face.
Here's the thing, though: she looked terrible. Her smile to me was genuine, but the sparkle in her eye was all but gone. Her skin was pale, and her teeth have blackened. She looked like she could barely walk, and like she was in a good deal of pain. When I saw her last July, she had already been in treatment for who-knows-how-long, and she had a bald head; today I had a bit more hair than she did. I can surmise what her definition of a "rough day" is, and the thought of it makes my chest contract and my eyes sting. It looks like the angel I met last July is fighting even more demons. I carry her in my heart and pray that she will win her battle.
I didn't realize until after I saw her just how much anxiety I have had about starting radiation. This morning I did a ton of chores around the house, catching up on things and actually working up a sweat I was doing so much and so quickly (playing with Tessa intermittantly between tasks), and I think that what I was really doing is preparing for another battle...perhaps one in which I won't be up to vacuuming or catching up on laundry or organizing a box of things to be donated. I thought that I was just being productive, but I think that somewhere in my head I am preparing to enter the chemo-like state again. The realization of this makes me sick.
With these thoughts in my head, I felt somewhat emotional as I met my radiation team. Four individuals (Maria, Luce, Jude and...oh no the name has slipped already!) will be performing all of my treatments, and they were very kind. I laid on the machine and they marked me up with even more ink, measuring and aligning the machine to set the coordinates so that the radiation will only hit the intended areas and not damage my heart, lungs, etc. This was the final step before beginning radiation in earnest tomorrow.
After radiation simulation, I went to Starbucks, and treated myself to a pastry. The Weight Watchers thing is going fabulously, and I really feel good, but I quite intentionally buried my anxiety in food. (I have enough points to do this, so it's not even cheating. I get weighed tomorrow and hope to report some weight loss then.)
I do not want to go back in that building every day for the next two months. More than that, though, I don't want to feel sick again. I feel so great right now that the idea that radiation might take away all of my newfound energy is...well, I don't have the right word for it. Disheartening. Terrifying. Painful. I don't want to go back. I know that radiation isn't chemo, and I don't expect the same thing, but as I lay on the radiation table I realized that I've been telling myself that radiation isn't a big deal and that it's just a minor inconvenience and that it's nothing compared to chemo. Well, as I walked through the 10 inch thick lead doors marked "caution" and as four people hovered over me and a giant machine whirred over and around me, moving into position, my left arm held uncomfortably above my head and my left chest (no longer a breast) exposed, I realized that this is real. This is not just "a little extra to make sure," it's deep treatment. And I know how treatment - surgery and chemo - has felt so far, and the idea of more of it is almost too much. Too, too much.
I think that this is the real reason I was so upset on the 28th when I was told that I'd have to wait to start radiation. I have gotten used to feeling good again and I've had time to remember what it means to be "normal", and I appreciate it more than ever before. And now I have to adjust to being a cancer patient again. Don't worry, I am not throwing myself into the pit of dispair and assuming the worst about my treatment (I am still hopeful that I'll feel great) but the truth is that when this is done I will have some, if not many, side effects, and it's not fun.
And then there's that Goth angel. I can wear my pink ribbon polarfleece, and I can roll my eyes at the thought of having stickers on my body for the next couple months, and I can publish a running commentary of my treatment on the internet, and I can do all of these things as a way of saying "I'm stronger than this! I have cancer, but cancer does not have me!" and I will raise money and I will walk 60 miles and I will volunteer....but despite those pretty, optimistic, positive actions, the truth is that this damn disease is ugly. UGLY. That Goth angel inspired such strength and courage when I met her in July, and this stupid disease is stealing so much from her. Today, she terrifies me.
I came home from radiation and sobbed on Ryan's shoulder for a moment. Then I emailed Starbucks to see what the nutritional information for the treat I had is so that I can calculate the points, and then I took Tessa to a playdate (where I had a lovely time). So life goes on. I will not remain a babbling mess, but today I am reminded of the road ahead. Again. I will continue to be optimistic, but every now and then the reality of my fear punches me in the stomach.
Kristina
Perhaps some of you will remember that at my first meeting with Dr. Rinn, my oncologist, Ryan and I met a couple in the lobby who were dressed in black, Goth clothing. They were kind to us, and the woman was particularly helpful to me as she told me about chemo and tried to help me to believe that it wasn't going to be as bad as I expected; she truly helped to alleviate some of my fears. Anyway, today I saw her again for the first time. I walked right by, and then thought better of it, turned around, and approached her. I told her that she probably didn't remember me, but that I'd met her on my first day of chemo, and that I was truly grateful to her for helping me so much. She hugged me and told me that she was glad I'd stopped to tell her, and that I made it somehow worthwhile for her that she'd been able to help me. She told me that she'd been having a rough day, and that I had brought a smile to her face.
Here's the thing, though: she looked terrible. Her smile to me was genuine, but the sparkle in her eye was all but gone. Her skin was pale, and her teeth have blackened. She looked like she could barely walk, and like she was in a good deal of pain. When I saw her last July, she had already been in treatment for who-knows-how-long, and she had a bald head; today I had a bit more hair than she did. I can surmise what her definition of a "rough day" is, and the thought of it makes my chest contract and my eyes sting. It looks like the angel I met last July is fighting even more demons. I carry her in my heart and pray that she will win her battle.
I didn't realize until after I saw her just how much anxiety I have had about starting radiation. This morning I did a ton of chores around the house, catching up on things and actually working up a sweat I was doing so much and so quickly (playing with Tessa intermittantly between tasks), and I think that what I was really doing is preparing for another battle...perhaps one in which I won't be up to vacuuming or catching up on laundry or organizing a box of things to be donated. I thought that I was just being productive, but I think that somewhere in my head I am preparing to enter the chemo-like state again. The realization of this makes me sick.
With these thoughts in my head, I felt somewhat emotional as I met my radiation team. Four individuals (Maria, Luce, Jude and...oh no the name has slipped already!) will be performing all of my treatments, and they were very kind. I laid on the machine and they marked me up with even more ink, measuring and aligning the machine to set the coordinates so that the radiation will only hit the intended areas and not damage my heart, lungs, etc. This was the final step before beginning radiation in earnest tomorrow.
After radiation simulation, I went to Starbucks, and treated myself to a pastry. The Weight Watchers thing is going fabulously, and I really feel good, but I quite intentionally buried my anxiety in food. (I have enough points to do this, so it's not even cheating. I get weighed tomorrow and hope to report some weight loss then.)
I do not want to go back in that building every day for the next two months. More than that, though, I don't want to feel sick again. I feel so great right now that the idea that radiation might take away all of my newfound energy is...well, I don't have the right word for it. Disheartening. Terrifying. Painful. I don't want to go back. I know that radiation isn't chemo, and I don't expect the same thing, but as I lay on the radiation table I realized that I've been telling myself that radiation isn't a big deal and that it's just a minor inconvenience and that it's nothing compared to chemo. Well, as I walked through the 10 inch thick lead doors marked "caution" and as four people hovered over me and a giant machine whirred over and around me, moving into position, my left arm held uncomfortably above my head and my left chest (no longer a breast) exposed, I realized that this is real. This is not just "a little extra to make sure," it's deep treatment. And I know how treatment - surgery and chemo - has felt so far, and the idea of more of it is almost too much. Too, too much.
I think that this is the real reason I was so upset on the 28th when I was told that I'd have to wait to start radiation. I have gotten used to feeling good again and I've had time to remember what it means to be "normal", and I appreciate it more than ever before. And now I have to adjust to being a cancer patient again. Don't worry, I am not throwing myself into the pit of dispair and assuming the worst about my treatment (I am still hopeful that I'll feel great) but the truth is that when this is done I will have some, if not many, side effects, and it's not fun.
And then there's that Goth angel. I can wear my pink ribbon polarfleece, and I can roll my eyes at the thought of having stickers on my body for the next couple months, and I can publish a running commentary of my treatment on the internet, and I can do all of these things as a way of saying "I'm stronger than this! I have cancer, but cancer does not have me!" and I will raise money and I will walk 60 miles and I will volunteer....but despite those pretty, optimistic, positive actions, the truth is that this damn disease is ugly. UGLY. That Goth angel inspired such strength and courage when I met her in July, and this stupid disease is stealing so much from her. Today, she terrifies me.
I came home from radiation and sobbed on Ryan's shoulder for a moment. Then I emailed Starbucks to see what the nutritional information for the treat I had is so that I can calculate the points, and then I took Tessa to a playdate (where I had a lovely time). So life goes on. I will not remain a babbling mess, but today I am reminded of the road ahead. Again. I will continue to be optimistic, but every now and then the reality of my fear punches me in the stomach.
Kristina
Friday, January 06, 2006
Moving forward
Hello, friends. I haven't been updating much because (drumroll please) I've been out living my life and haven't had a chance to sit down. HURRAH! I feel somewhat human and up to most tasks, and I appreciate it like never before.
Yesterday I had a series of appointments and tests. Good news: my heart function (MUGA test) hasn't been impacted by all these toxic drugs, and I still test on the high end of normal. Hopeful for good news: I had another cat scan to check out the nodules in my lungs, and it looks like there hasn't been any change (which would confirm the suspicion that the nodules are scar tissue, not cancer); I should hear the final analysis in the next couple of days. More good news: my blood counts now test in the normal range! My doctor was amazed that I have recovered so quickly since chemo... and I'm amazed as well.
I am off and running and trying to get my life in order now that chemo is over - it's a new year for me in more ways than just the calendar change. To re-take control, I've signed up for Weight Watchers, and I'm very happy with that decision. It doesn't feel limiting to me at this (very early) stage, because I am just so hopeful that I can feel 100% healthy that the "sacrifice" of eating less, and eating more healthy foods, doesn't feel like a sacrifice at all, it feels like a gift to myself. I've done a couple training walks for the Breast Cancer 3-Day, and overall, my physical self feels fantastic compared to a mere three weeks ago. Really, I feel like a new woman.
And now I must run to co-op preschool with Tessa...more later!
Love,
Kristina
Yesterday I had a series of appointments and tests. Good news: my heart function (MUGA test) hasn't been impacted by all these toxic drugs, and I still test on the high end of normal. Hopeful for good news: I had another cat scan to check out the nodules in my lungs, and it looks like there hasn't been any change (which would confirm the suspicion that the nodules are scar tissue, not cancer); I should hear the final analysis in the next couple of days. More good news: my blood counts now test in the normal range! My doctor was amazed that I have recovered so quickly since chemo... and I'm amazed as well.
I am off and running and trying to get my life in order now that chemo is over - it's a new year for me in more ways than just the calendar change. To re-take control, I've signed up for Weight Watchers, and I'm very happy with that decision. It doesn't feel limiting to me at this (very early) stage, because I am just so hopeful that I can feel 100% healthy that the "sacrifice" of eating less, and eating more healthy foods, doesn't feel like a sacrifice at all, it feels like a gift to myself. I've done a couple training walks for the Breast Cancer 3-Day, and overall, my physical self feels fantastic compared to a mere three weeks ago. Really, I feel like a new woman.
And now I must run to co-op preschool with Tessa...more later!
Love,
Kristina
Tuesday, January 03, 2006
Off to the spa!
In a few minutes I'm leaving for The Salish to experience a day/night of pampering. Ryan got me a lovely package that includes an overnight and spa treatments, and I can't wait. My parents are watching Tessa (thanks, Mom & Dad) and Ryan will join me later in the evening...hurrah! (Thank you, Ryan, for your loving gift.)
Today is my brother's 30th birthday. I can not believe that my "kid" brother is now in his thirties, as somewhere in my head he's still about twelve years old. However, despite my twisted sense of time, Mike has indeed grown to be a kind, generous man and a devoted husband and father...and he is, indeed, thirty. Happy birthday, Mike. You'll always be "the kid" to me, but I certainly respect the person that you have become.
I have so much to blog that I haven't made time for - Christmas, New Year's, and the day to day, as well as my thoughts as I recover from chemo. These things will have to wait another day, however...and I'm off to the spa!
Love,
K
Today is my brother's 30th birthday. I can not believe that my "kid" brother is now in his thirties, as somewhere in my head he's still about twelve years old. However, despite my twisted sense of time, Mike has indeed grown to be a kind, generous man and a devoted husband and father...and he is, indeed, thirty. Happy birthday, Mike. You'll always be "the kid" to me, but I certainly respect the person that you have become.
I have so much to blog that I haven't made time for - Christmas, New Year's, and the day to day, as well as my thoughts as I recover from chemo. These things will have to wait another day, however...and I'm off to the spa!
Love,
K
Wednesday, December 28, 2005
Frustration
This morning I went to my radiation simulation appointment. It went relatively well, I got my tattoos (two black dots), and I'm ready to go. However, somebody screwed up the scheduling. Dr. Morris told me, very distinctly, that she wanted me to be ready to start radiation on the 2nd. Well, apparently they don't have that note in the schedule, and Dr. Morris is on vacation, and they said they could get me going on the 16th. WHAT?! I negotiated them to the 10th, but they were very clear with me that this schedule could change at any time and I may not be able to start on the 10th.
Dammit. I just want this whole business over with, and a delay of even a day is unbearable. Two weeks is absolutely unacceptable. A week is incredibly frustrating.
I am scheduled for 33 treatments (Mon thru Fri at 1:45pm), with a finish date of February 27th. I won't mark that date on my calendar, though, as the start date is still not set in stone.
Damn, damn, damn. I really had my heart set on getting started with this so I could get finished with it, and it seems that the finish date gets pushed out farther and farther.
Sigh.
Dammit. I just want this whole business over with, and a delay of even a day is unbearable. Two weeks is absolutely unacceptable. A week is incredibly frustrating.
I am scheduled for 33 treatments (Mon thru Fri at 1:45pm), with a finish date of February 27th. I won't mark that date on my calendar, though, as the start date is still not set in stone.
Damn, damn, damn. I really had my heart set on getting started with this so I could get finished with it, and it seems that the finish date gets pushed out farther and farther.
Sigh.
Tuesday, December 27, 2005
What's on the outside
(I will put a Christmas update posting another evening, I promise.)
I have been thinking a lot about what's on the outside - that is, my physical appearance. I know, I know, it's what's on the inside that counts. I know, inner beauty shines brighter and longer than outer beauty. I know that my friends and family love me for who I am, and not what I look like. I also know that I have a husband who assures me that he still finds me attractive, and a mother who still thinks that her little girl is beautiful. I know, I know, I know.
Here's the thing, though: I don't like what's happened on my outside. It may be shallow to think about, or to complain about, but the thing is that what's on the outside is real and tangible, and I hate what has become of my body. All of the assurances in the world that I look lovely can not change a few facts. I am still bald. (Yes, I have fuzz, but my scalp is still clearly visible.) I have no eyebrows. I have no eyelashes. I have gained 17 pounds on top of the extra weight I carried before chemo, and none of my old clothes fit. I am bloated. My skin breaks out regularly. I have no breast on my left side, and in its place I have a series of scars (a long, ugly one where the breast used to be; a shorter, deep one where the nodes were removed; and two centimeter long circular ones where the drains came out); on my right side (the "good" breast) I have a two inch scar where the portacath was inserted, and the portacath itself protrudes from under my skin, looking like the alien thing that it is. On my neck is another scar from where the portacath tubing was inserted. My fingernails and toenails are yellowy black from the chemo-poison, and they have rings on them marking the chemo treatments. My left arm and hand are slightly swollen from lymphedema. I am lacking pubic hair. I will gain more scars when my ovaries are removed, and when I undergo reconstruction.
It's a long list. I could handle one or two of these things better than I can handle the entire list. The list is too long.
When I look in the mirror, I don't see the person that I used to be. As a matter of fact, when I look at old pictures I see them with a certain detachment: it doesn't seem like me in the pictures any more. Even my face has changed shape and form from these changes, and I don't recognize the old me. I look at her and think how lovely she is. I miss her dreadfully.
Before anyone jumps in with a well intentioned "I don't see you like that" or "You're my friend/family member/whatever and I will always think that you're pretty," please stop. I am not fishing for compliments here, I'm laying it on the line to say that I recognize that this is my new reality, at least in the short term. Kind expressions denying these changes do not make me feel better, unfortunately, because the changes are real, unasked for, and diffucult to face, but denying them doesn't make them any less real or difficult. I am truly grateful for the love and support of those who care about me, but I don't think that anyone who hasn't been through this kind of thing can say the "right" thing.
I used to think that I didn't care much about what was on the outside. I've gone six months without getting my hair cut, I don't wear makeup, and my day-to-day fashion (usually jeans and t-shirts) is anything but fashionable. It turns out, however, that I actually did care. I wasn't thin, but my figure was feminine, and I liked my curves. My hair wasn't great, but it was soft and healthy. My dark eyebrows and eyelashes nicely defined my eyes. I looked healthy, and it turns out that there was a certain vanity in my lack of attention to my outward appearance.
I miss my old body more than I thought I would. Much more, actually. It turns out that what's on the outside DOES matter to me. What's on the inside matters more, I agree, but the outside counts too.
Some of what I've lost will return. I wll regain hair, eyelashes, and eyebrows that will be as good as the old ones. I will work hard to lose the weight and to get fit. The doctors will build me new breasts to replace the old ones. The new ones could never be as good (they'll be covered in scars and they won't be able to feel any sensations because they'll have no nerve endings), but they'll be better than what I've got. (I don't like my right breast any more because I see it as a potential timebomb, and I NEVER WANT TO DO THIS AGAIN...I would much rather have it removed and think that the risk of getting breast cancer again is reduced by its removal.)
I hope that as my body changes again, for the better, as I recover from treatment and get reconstruction, I can learn to feel feminine again. I feel as though my femininity has been removed completely from me. Outwardly, femininity is made of breasts, hair, eyelashes, and curves...all things that have been stolen from me. Inwardly, it helps to have estrogen...and I don't have that any more either.
Where am I going with all of this? I'm not sure. As I said, I do not want a series of denials out of all of this...I am not looking for compliments, I am just trying to share a difficult part of this journey. It's tough to acknowledge this part, because my Pollyanna nature wants to find something positive in it, but the truth is that there are no positive physical changes from this experience. Whatever inward strength I may gain from this experience, my body has been negatively impacted and will never fully recover.
It turns out that I do think that what's on the outside matters. I miss the old outside of me. I dislike the current outside of me. I hope that I can learn to like the future outside of me.
In the meantime, I struggle.
I have been thinking a lot about what's on the outside - that is, my physical appearance. I know, I know, it's what's on the inside that counts. I know, inner beauty shines brighter and longer than outer beauty. I know that my friends and family love me for who I am, and not what I look like. I also know that I have a husband who assures me that he still finds me attractive, and a mother who still thinks that her little girl is beautiful. I know, I know, I know.
Here's the thing, though: I don't like what's happened on my outside. It may be shallow to think about, or to complain about, but the thing is that what's on the outside is real and tangible, and I hate what has become of my body. All of the assurances in the world that I look lovely can not change a few facts. I am still bald. (Yes, I have fuzz, but my scalp is still clearly visible.) I have no eyebrows. I have no eyelashes. I have gained 17 pounds on top of the extra weight I carried before chemo, and none of my old clothes fit. I am bloated. My skin breaks out regularly. I have no breast on my left side, and in its place I have a series of scars (a long, ugly one where the breast used to be; a shorter, deep one where the nodes were removed; and two centimeter long circular ones where the drains came out); on my right side (the "good" breast) I have a two inch scar where the portacath was inserted, and the portacath itself protrudes from under my skin, looking like the alien thing that it is. On my neck is another scar from where the portacath tubing was inserted. My fingernails and toenails are yellowy black from the chemo-poison, and they have rings on them marking the chemo treatments. My left arm and hand are slightly swollen from lymphedema. I am lacking pubic hair. I will gain more scars when my ovaries are removed, and when I undergo reconstruction.
It's a long list. I could handle one or two of these things better than I can handle the entire list. The list is too long.
When I look in the mirror, I don't see the person that I used to be. As a matter of fact, when I look at old pictures I see them with a certain detachment: it doesn't seem like me in the pictures any more. Even my face has changed shape and form from these changes, and I don't recognize the old me. I look at her and think how lovely she is. I miss her dreadfully.
Before anyone jumps in with a well intentioned "I don't see you like that" or "You're my friend/family member/whatever and I will always think that you're pretty," please stop. I am not fishing for compliments here, I'm laying it on the line to say that I recognize that this is my new reality, at least in the short term. Kind expressions denying these changes do not make me feel better, unfortunately, because the changes are real, unasked for, and diffucult to face, but denying them doesn't make them any less real or difficult. I am truly grateful for the love and support of those who care about me, but I don't think that anyone who hasn't been through this kind of thing can say the "right" thing.
I used to think that I didn't care much about what was on the outside. I've gone six months without getting my hair cut, I don't wear makeup, and my day-to-day fashion (usually jeans and t-shirts) is anything but fashionable. It turns out, however, that I actually did care. I wasn't thin, but my figure was feminine, and I liked my curves. My hair wasn't great, but it was soft and healthy. My dark eyebrows and eyelashes nicely defined my eyes. I looked healthy, and it turns out that there was a certain vanity in my lack of attention to my outward appearance.
I miss my old body more than I thought I would. Much more, actually. It turns out that what's on the outside DOES matter to me. What's on the inside matters more, I agree, but the outside counts too.
Some of what I've lost will return. I wll regain hair, eyelashes, and eyebrows that will be as good as the old ones. I will work hard to lose the weight and to get fit. The doctors will build me new breasts to replace the old ones. The new ones could never be as good (they'll be covered in scars and they won't be able to feel any sensations because they'll have no nerve endings), but they'll be better than what I've got. (I don't like my right breast any more because I see it as a potential timebomb, and I NEVER WANT TO DO THIS AGAIN...I would much rather have it removed and think that the risk of getting breast cancer again is reduced by its removal.)
I hope that as my body changes again, for the better, as I recover from treatment and get reconstruction, I can learn to feel feminine again. I feel as though my femininity has been removed completely from me. Outwardly, femininity is made of breasts, hair, eyelashes, and curves...all things that have been stolen from me. Inwardly, it helps to have estrogen...and I don't have that any more either.
Where am I going with all of this? I'm not sure. As I said, I do not want a series of denials out of all of this...I am not looking for compliments, I am just trying to share a difficult part of this journey. It's tough to acknowledge this part, because my Pollyanna nature wants to find something positive in it, but the truth is that there are no positive physical changes from this experience. Whatever inward strength I may gain from this experience, my body has been negatively impacted and will never fully recover.
It turns out that I do think that what's on the outside matters. I miss the old outside of me. I dislike the current outside of me. I hope that I can learn to like the future outside of me.
In the meantime, I struggle.
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