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
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