Friday, June 19, 2009

Buh-bye Chemo, don't let the door..........

I know, I know - I bailed on my blog. I believe last I wrote I was about to do my first of 4 treatments of a different chemo, Taxol - after already finishing 4 rotten treatments of dose dense Adriamycin & Cytoxin. I may have titled my post "Dread", but the truth is I'd convinced myself that the Taxol was going to be WAY better than the A/C. I set myself up for failure, not smart. In a very important way it is better, the Adriamycin - known as "The Red Devil" - is the drug that has the classic symptom of nausea - and that was good and truly awful. Having that gone was a huge relief, and it was great to drop all of the anti-nausea drugs I had to tank up on to get thru it. But, we traded that for some new and different, not so fun side effects. Taxol is still chemo - very strong chemo - so yeah, still no walk in the park.

Starting the night of my 1st treatment the hot flashes came with a vengeance. I went into immediate, full-blown menopause - or chemopause as it is not so fondly referred to. All night long, one after the other, furious and long blazing hot flashes. I'm drenched in sweat (especially my bald head). Flailing, twisting in the covers, and according to my husband moaning all night long. For the first 3-4 nights after each of the 4 Taxol's I experienced this, and I haven't had a period since March - I'm most likely done with those, which I'm ok with. By Sunday I was wracked with intense bone pain, very different from anything I've experienced before (chemo is just one new experience after another). Luckily my new friend Deb had warned me about the pain - and told me to TAKE THE PAIN MEDS - so I tanked up on those and it took the edge off. By Monday my fingers, feet and face were numb - hello Neuropathy. It's like the body part has "fallen asleep", dead asleep, and you have just started to try and wake it up, that numb and tingling feeling. The worst was my hands, as it became painful and difficult for me to do some things, mainly open a sliding door. My house is filled with pocket doors - which I normally love - but I found myself almost unable to get out of my bedroom when faced with the closed door one morning. Then the fingernails on my right hand started to have dark spots, which I knew would lead to lifting of the nails, and possibly having them fall off. Each morning I would wake to see how much worse they had gotten, a little obsessively. And lastly, I still had that awful, overall crappy chemo-y sick feeling that lasted just as long as the A/C - 6-7 days. MUCH better than the A/C? Not by a long shot. Mentally I slid lower and lower, a bit darker and sadder each day.

Even tho I knew that there were no hormonal options in the drug department for my menopausal symptoms, I went ahead and emailed my doc about the brutal hot flashes on Monday night after my 1st chemo. She called me on Tuesday. "So, I noticed on Friday that you might be having problems with your mood......" HA! I answered, "ya think?" and she laughed. I told her that several of my friends that had been thru the experience advised me to start an anti-depressant ASAP, I had thought "NOT ME!" She told me there was an antidepressant that's been proven to help lighten hot flashes as well - SIGN ME UP! I started Effexor right away, and about 2 weeks later I realized that I felt like a dark cloud had lifted from me - I felt better. I spent almost 3 weeks not much feeling like talking to people, just reading, crocheting or sleeping - when I wasn't working. I don't think I went out to eat for 2 full weeks. I don't think it's helped with the flashing, the pattern of miserable hot flashing from the night of chemo for several days, slowly getting better right up to chemo day again - and repeat. I really think that when I get further than 13 days from a chemo treatment - which I haven't been since March 5! - the hot flashes will be better, more "normal". Also, starting on my 2nd Taxol, the doc had me put my hands in an ice bath for the 3 hours of the Taxol infusion, to avoid the neuropathy and try and save my nails. It worked on the numbness! While my feet and face got a little number each time, my fingers were only slightly numb and were never again impaired in function. That was huge. The dark spots stopped on my nails, but gradually several of them have lifted, my two index fingers are unattached about 1/2 way up - I'm hoping that since there's not another chemo on the way they'll stop and I won't completely lose any of them.

And yes - I AM DONE WITH CHEMO!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Last Friday I had my 8th and final round. I was a WRECK that morning, my pulse was 126, the nurse said "Are you anxious? That's very very high..." YES! I was worried until the last drop o poison dripped into my IV and the machine started the glorious beeping that something would happen and I'd have a delay. I took a leap of faith and paid off the beach house I rented for the week after July 4th in full - Hey Gulf of Mexico - here I come! I'll be hairless, weak and anemic, but by God we're going. I'm more excited for this trip than I was for our 3 weeks in Hawaii, or our 2 week Caribbean Island hopping vaca, or Europe. I have spent so much time at home, not leaving for days on end because I've felt so rotten. Just to get more than 50 miles between me and my home seems like a big victory to me. Despite my anxiety, my 8th and final chemo went without a hitch or delay and I was finally DONE. It was hard to get too excited, as my final post chemo time was extra yucky - all us cancer patients HATE the words "cumulative effects", you feel a little crappier, a little weaker, a little more chemo-y each time. But now I'm on the upswing from it, and it's hard to grasp that this time it will just keep getting better, no more trips to the chemo room to knock my legs out from under still feels surreal. I think when I get to next Friday and Saturday it will finally feel real.

I had a CAT scan the week after chemo 7, about 3 weeks ago, Dr. Amy said, "just to take a look at things, look for changes". Hmmmm. The worry started then for the 6 days up to the scan. I had the scan at 11:00am, stopped by my husband’s office to see him, picked up the boy from summer school, got home at 1:00pm and checked my email. I had a UT Southwestern "My Chart" email - "New Test Results Posted". No. NO WAY could I have my CAT scan results 3 hours after the test? I signed into my profile and there it was, CAT Scan results from the radiology department. A note was attached to the top of the results:

Good news! Enjoy your weekend. Amy Harker-Murray, MD

And from the radiologists report:

The heart is not enlarged. The great vessels are unremarkable. No adenopathy is seen. Postsurgical changes are seen at the left breast and left axilla. The visualized structures of the abdomen unremarkable. No worrisome osseous lesions are seen. No discrete finding suggesting metastatic disease are seen.

Two things here, first that last line about no metastatic disease seen - that means NO CANCER is evident - YIPPEEE! Second, the note at the top from my doc was so that when I opened the report I would immediately understand that ALL IS WELL. Anyone - ANYONE out there ever had the results of a CAT scan - with a personal note added from your doctor - in THREE HOURS after the test?? I am just gobsmacked - and very grateful, once again, to be where I am getting treatment.

To answer the question people are trying to figure out how to ask me it seems, since I'm thru chemo - "what do the doctors think? Do you know if it worked?" I'm considered cancer free at this point; they can find no evidence of cancer from bloodwork or from the scan. I have taken all the chemo they can give me, and I'm moving on to radiation, my final treatment to kill any errant cancer cells that may be in the body. On July 2 I go in for my mapping CAT scan and I get my tattoos (little dots on my chest so that they can line me up for radiation each time most precisely, Stephen says I should ask if they can do stars instead of dots) I spend the next week on the beach, then July 13 I start my radiation treatments. I will have 33, once a day Mon - Fri until August 26, which is the 3rd day of the new school year. One of my goals was to try and get all of my treatment done before the 1st football game, and I'm going to do it. The side effects from radiation that my doc expects are a possible sunburn effect on my boob (they are doing whole breast radiation on my left, the one that had the tumor), and some fatigue. They want you in and out for each treatment in 15 minutes - which sounds doable. I just can't get worked up and worried about the radiation - after 8 rounds of chemo? Pfft - I can handle it. I’d rather not, but I am.

“You never know how brave you can be until it’s your turn to be brave.” Author unknown

People keep telling me how brave I am, I don’t feel brave. I’ve handled this the best I could, the best I knew how – I do believe that. I do feel changed, a little different from this whole experience, but I don’t see how you could go thru it and not feel that way. I hear women say they are GRATEFUL they got their breast cancer, I certainly don’t feel that way, if we could turn back time I would certainly choose NOT to go thru this, more importantly to not put my family & friends thru it. But go thru it we have, and I am grateful for so many, many things now. For finding UT Southwestern and my amazing team of docs there. For finding friendship with the women that have supported me that are going thru this fight ahead of me (Deb & Jo – you are at the top of this list!) It has indeed given me clarity on what’s important, and what’s just NOT. My family has been amazing, I truly have the most supportive husband in the world. The best kids. The best brother, who married the best sister in law. The best in-laws all the way around. Grateful for my most supportive and understanding boss, never one whit of pressure to do anything I wasn’t ready to do, to take off less time than I really needed. My community has risen up to watch over and care for me and my family, I’m very proud to live in and have raised my son here. I’m grateful my cancer hadn’t progressed any further than it had, or that I didn’t have a more dire kind of cancer, I’ve met so many during this process that are dealing with far worse than I am. I’m grateful to be a survivor – not a victim of cancer.