Today was relatively uneventful - especially compared to yesterday. I slept in for the first time since I can't remember, I ran some errands, I had lunch with Michele & Elliott, and I went to the hospital for my Neulasta shot. I was informed, once I got there, that I didn't need a Neulasta shot after Taxol....arrrrrghhhhh! The person who had booked them for me was a temp and very unaware. I calmly and politely suggested that someone needed to train him to ask questions etc.
My parents had Tessa for most of the day, which was a blessing - I was just emotionally wiped out from the events of yesterday. They came here for dinner and we enjoyed the wonderful soup that Jenny dropped off yesterday (thanks, Jenny), some salad, some bread, and (at my dad's request) some frozen pizza. Okay, he didn't request "frozen" pizza but it was in the freezer and I was too cheap to order out!
Now Tessa is bathed and in PJs and Ryan is tucking her into bed. I will soon go to bed myself, with the hope of sleeping through the night for once. I was very sad to miss girls' night out tonight - I can't remember the last time I was out of the house to do something fun in the evening - but since my parents left just a few minutes ago and I'm so tired I just can't make it. Sorry, PEPS friends!
Love to all,
Kristina
Thursday, September 29, 2005
Wednesday, September 28, 2005
Allergic reaction
I left for chemo (taking the Swedish free shuttle) at 1:30pm, and I JUST got home. Things were running a little late, but the real reason I'm so late is that I had an allergic reaction to the Taxol. At first the nurse (who had to sit with me and watch me for signs of reactio) said, "Your lips and cheeks are flushed - are you okay?" and I said that I felt fine...but then my throat started to close up, and my chest got tight. When I told them that, my cubby filled with nurses and they hooked me up to oxygen and gave me Decadron (this steroid counteracts the allergic effect) and somebody called my oncologist, Dr. Rinn. By that point my heart rate had jumped from 70 to 126...not a good sign. They had to wait for the steroid to really kick in, and then everything had to be done very slowly after that as they watched me for signs of further allergic reactions.
Mysteriously, I stayed calm. It was very frightening, however, and staying calm took so much energy that I felt like I was in a fog where I couldn't reach anyone; it was difficult to speak. Not an experience I'd care to repeat.
Sigh. I had a bad feeling about allergic reactions, and I'd been stressed about it for a few days, but I had imagined the worst about Herceptin, not Taxol. Anyway, my intuition wasn't far off, and that's interesting.
My parents kept Tessa overnight - they had to go to Target to get her PJs - which is a blessing because Ryan was able to come and sit with me, and we didn't leave the hospital until after 10:30 (Tessa never could have made it that long). I miss my baby girl - I'd really love to stare at her sleeping face right now - but this will help me tomorrow morning before my mom brings her here, too, and it's all for the best. Sigh.
This does not impact further treatment. I will take Decadron in advance of my Taxol next time, and I will be closely monitored, but that's it.
Five chemo down, eleven to go. One Taxol/Herceptin finished, eleven to go.
I have GOT to get some sleep. Good night, all.
Love,
Kristina
Mysteriously, I stayed calm. It was very frightening, however, and staying calm took so much energy that I felt like I was in a fog where I couldn't reach anyone; it was difficult to speak. Not an experience I'd care to repeat.
Sigh. I had a bad feeling about allergic reactions, and I'd been stressed about it for a few days, but I had imagined the worst about Herceptin, not Taxol. Anyway, my intuition wasn't far off, and that's interesting.
My parents kept Tessa overnight - they had to go to Target to get her PJs - which is a blessing because Ryan was able to come and sit with me, and we didn't leave the hospital until after 10:30 (Tessa never could have made it that long). I miss my baby girl - I'd really love to stare at her sleeping face right now - but this will help me tomorrow morning before my mom brings her here, too, and it's all for the best. Sigh.
This does not impact further treatment. I will take Decadron in advance of my Taxol next time, and I will be closely monitored, but that's it.
Five chemo down, eleven to go. One Taxol/Herceptin finished, eleven to go.
I have GOT to get some sleep. Good night, all.
Love,
Kristina
Back to Chemo
Today I return to my chemo schedule. The week "off" hasn't felt like a vacation, unfortunately... I kept wishing that I was advancing on the chemo list, instead of sitting still. I am anxious to move forward toward the end of treatment, and treading water made me feel tired without actually making progress.
However, today I will sit in the big chair again and learn what the next part of my treatment feels like. Today, in addition to the anti-emetics that I am given (a whole handful of drugs designed with the sole purpose of keeping my lunch where it belongs) I will be given a new chemo drug, Taxol, and the exciting new drug Herceptin (which is not a chemo drug, but a "biological agent" which attacks only my particular type of cancer, which is Her2/neu+). The Taxol is given weekly for 12 weeks (last day: December 14) but the Herceptin will be given weekly for a year or more (there are some studies in the works that say that perhaps 3 years of treatment with Herceptin is preferable; my oncologist says we'll cross that line when we get there).
Taxol's predicted side effects are loss of eyebrows and eyelashes (which have thinned, but still look relatively normal on the AC treatment), and possible neuropathy in the hands, feet and face (tingling and numbness). I have been taking Glucosamine for the neuropathy; nothing helps keep hair, though. In positive news with Taxol, it should have lessened side effects for nausea, and I should feel better in general than I have on the AC, although the fatigue effects are cumulative. My hair may also start to grow (on my head, not eyebrows etc...isn't that strange?) on the Taxol, though it won't "really" grow until I'm done with chemo. My hope is that for Easter I will have no visible scalp and at least really short hair, but we will see.
Herceptin's primary side effect is a weakening of the heart muscle. I had to have a MUGA test on my heart prior to beginning treatment to make sure that my heart was strong enough for Herceptin; indeed, my heart started this strong. I am told that I will have periodic MUGAs as I go through treatment to make sure that my heart muscle is strong enough to continue with the Herceptin. Some people have vomiting as a side effect of the first Herceptin treatment, but subsequent treatments tend to be easier...it's just the first one that can be so nasty. (That's okay in general, but as I face my first treatment it doesn't sound particularly fun.) The only thing that really scares me today - but it's a biggie - is that some people have a fatally allergic reaction to the Herceptin. The percentage is absolutely miniscule, and they will administer it very slowly and give me Benedryl as a precaution...but let's just say that I will feel better when the whole thing is over with and I'm writing about it from the other side.
Herceptin, despite my fears, is a VERY exciting drug. It was only released in June - the month I was diagnosed - for early stage breast cancer treatment, and the medical community fell into an excited uproar about it because it is so promising. The use of Herceptin has cut the rate of recurrance by 52%. No other drug has done anything nearly that amazing for Her2/neu+ cancers. Forget any studies that you have read about prognosis, because Herceptin changes all of that. Herceptin is the reason that I'm so optimistic about my long term survival - it really does seem like a wonder-drug. (If you do a Google search on it, or go to the Komen.org or breastcancer.org websites, you'll see all kinds of great information about it. Her2/neu+ breast cancer used to be a "bad" kind to get...now it's a "good" kind.)
For friends and family this might be a bit of an overshare, but as there are other newly diagnosed women who read my blog to learn about treatment, I'll share a bit more...
It looks like I'm at the start of menopause, or "chemopause." I expected my period last week, and instead I'm getting hot flashes. They're bearable, though not fun. I'm not breaking out in a sweat, I just get a feverish feeling that rushes over my body - particularly my upper body and face - that subsides pretty quickly. The worst part is that it interrupts my sleep - I wake up roasting hot, throw off the covers, and then as the hot flash exits I feel cold an have to bundle myself up again. Anyway, it's very strange to think of myself as a 36 year old in menopause; we know that mine is not just temporary (chemo induced menopause, nicknamed "chemopause," often ends some time after treatment in women who were not already close to natural menopause) because on my long list of things to do is to schedule an appointment to have an oopharectomy/hysterectomy. Joy, joy, fun fun.
Though it's amazing how well I have tolerated chemo, it's also amazing to me how foreign my body has become to me. I have symptoms that are textbook for AC treatment, including:
- sleeplessness (I can't sleep without drugs any more, and even those aren't working now)
- metallic taste in my mouth
- fatigue
- hot flashes
- gritty eyes that tear up a lot
- food aversions
- nausea that makes me need to eat every couple of hours
- loss of libido
- loss of hair (obviously!)
- painful constipation
- dry skin (something I've never experienced before)
- chemobrain...I feel like I can't remember anything, and I've dropped about 50 IQ points.
This Christmas I certainly hope to be celebrating the end of all of this. I still need to figure out what kind of surgery to schedule for the winter (oopharectomy, hysterectomy, or both), and whether I need to do radiation (usually five days a week for six weeks), and what kind of hormone therapy (possibly Femara, an aromatase inhibitor) to start....but finishing chemo will be a big, big milestone.
And on that note, I need to go take my medications and get ready for my day. I hope that my "medical update" is helpful to you in understanding all of this, and answers some of the questions people have been asking me.
Love,
Kristina
However, today I will sit in the big chair again and learn what the next part of my treatment feels like. Today, in addition to the anti-emetics that I am given (a whole handful of drugs designed with the sole purpose of keeping my lunch where it belongs) I will be given a new chemo drug, Taxol, and the exciting new drug Herceptin (which is not a chemo drug, but a "biological agent" which attacks only my particular type of cancer, which is Her2/neu+). The Taxol is given weekly for 12 weeks (last day: December 14) but the Herceptin will be given weekly for a year or more (there are some studies in the works that say that perhaps 3 years of treatment with Herceptin is preferable; my oncologist says we'll cross that line when we get there).
Taxol's predicted side effects are loss of eyebrows and eyelashes (which have thinned, but still look relatively normal on the AC treatment), and possible neuropathy in the hands, feet and face (tingling and numbness). I have been taking Glucosamine for the neuropathy; nothing helps keep hair, though. In positive news with Taxol, it should have lessened side effects for nausea, and I should feel better in general than I have on the AC, although the fatigue effects are cumulative. My hair may also start to grow (on my head, not eyebrows etc...isn't that strange?) on the Taxol, though it won't "really" grow until I'm done with chemo. My hope is that for Easter I will have no visible scalp and at least really short hair, but we will see.
Herceptin's primary side effect is a weakening of the heart muscle. I had to have a MUGA test on my heart prior to beginning treatment to make sure that my heart was strong enough for Herceptin; indeed, my heart started this strong. I am told that I will have periodic MUGAs as I go through treatment to make sure that my heart muscle is strong enough to continue with the Herceptin. Some people have vomiting as a side effect of the first Herceptin treatment, but subsequent treatments tend to be easier...it's just the first one that can be so nasty. (That's okay in general, but as I face my first treatment it doesn't sound particularly fun.) The only thing that really scares me today - but it's a biggie - is that some people have a fatally allergic reaction to the Herceptin. The percentage is absolutely miniscule, and they will administer it very slowly and give me Benedryl as a precaution...but let's just say that I will feel better when the whole thing is over with and I'm writing about it from the other side.
Herceptin, despite my fears, is a VERY exciting drug. It was only released in June - the month I was diagnosed - for early stage breast cancer treatment, and the medical community fell into an excited uproar about it because it is so promising. The use of Herceptin has cut the rate of recurrance by 52%. No other drug has done anything nearly that amazing for Her2/neu+ cancers. Forget any studies that you have read about prognosis, because Herceptin changes all of that. Herceptin is the reason that I'm so optimistic about my long term survival - it really does seem like a wonder-drug. (If you do a Google search on it, or go to the Komen.org or breastcancer.org websites, you'll see all kinds of great information about it. Her2/neu+ breast cancer used to be a "bad" kind to get...now it's a "good" kind.)
For friends and family this might be a bit of an overshare, but as there are other newly diagnosed women who read my blog to learn about treatment, I'll share a bit more...
It looks like I'm at the start of menopause, or "chemopause." I expected my period last week, and instead I'm getting hot flashes. They're bearable, though not fun. I'm not breaking out in a sweat, I just get a feverish feeling that rushes over my body - particularly my upper body and face - that subsides pretty quickly. The worst part is that it interrupts my sleep - I wake up roasting hot, throw off the covers, and then as the hot flash exits I feel cold an have to bundle myself up again. Anyway, it's very strange to think of myself as a 36 year old in menopause; we know that mine is not just temporary (chemo induced menopause, nicknamed "chemopause," often ends some time after treatment in women who were not already close to natural menopause) because on my long list of things to do is to schedule an appointment to have an oopharectomy/hysterectomy. Joy, joy, fun fun.
Though it's amazing how well I have tolerated chemo, it's also amazing to me how foreign my body has become to me. I have symptoms that are textbook for AC treatment, including:
- sleeplessness (I can't sleep without drugs any more, and even those aren't working now)
- metallic taste in my mouth
- fatigue
- hot flashes
- gritty eyes that tear up a lot
- food aversions
- nausea that makes me need to eat every couple of hours
- loss of libido
- loss of hair (obviously!)
- painful constipation
- dry skin (something I've never experienced before)
- chemobrain...I feel like I can't remember anything, and I've dropped about 50 IQ points.
This Christmas I certainly hope to be celebrating the end of all of this. I still need to figure out what kind of surgery to schedule for the winter (oopharectomy, hysterectomy, or both), and whether I need to do radiation (usually five days a week for six weeks), and what kind of hormone therapy (possibly Femara, an aromatase inhibitor) to start....but finishing chemo will be a big, big milestone.
And on that note, I need to go take my medications and get ready for my day. I hope that my "medical update" is helpful to you in understanding all of this, and answers some of the questions people have been asking me.
Love,
Kristina
Tuesday, September 27, 2005
Back from the LiveSTRONG Ride
We are home! We had a great time with friends and family this weekend. Ryan was able to attend the (very inspiring) pasta dinner hosted by the LiveSTRONG team, and had the privilege of seeing not only Lance Armstrong, but also Bob Role, George Hincapie, and Eddie Mercks (I'm certain I've spelled most of those names incorrectly - sorry) speak. Tessa and I spent a lot of time hanging out with GG and Auntie Charlotte, and we got in lots of pool time at the hotel.
Here are pictures from the weekend...
Lance & Bob at the podium:
Uncle Mike with Eddie:
Team DJ at the finish:
Ryan, Tessa, and I at the finish:
Charlotte & Mike at the finish:
The event raised about 1.2 million dollars - wow! The LAF website is showing that Ryan raised $1785.00 right so far (hurrah!) but we know that number does not include Microsoft's matching or donations that were sent via regular mail yet (give it time, and we know they'll show up). THANK YOU to everyone who supported us. We're glad to have been able to do this event, to see the survivors there, and to know that the money is going to help kick cancer's a**.
Love,
Kristina
Here are pictures from the weekend...
Lance & Bob at the podium:
Uncle Mike with Eddie:
Team DJ at the finish:
Ryan, Tessa, and I at the finish:
Charlotte & Mike at the finish:
The event raised about 1.2 million dollars - wow! The LAF website is showing that Ryan raised $1785.00 right so far (hurrah!) but we know that number does not include Microsoft's matching or donations that were sent via regular mail yet (give it time, and we know they'll show up). THANK YOU to everyone who supported us. We're glad to have been able to do this event, to see the survivors there, and to know that the money is going to help kick cancer's a**.
Love,
Kristina
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