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
Friday, February 24, 2006
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
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