Thursday, December 15, 2011

this moment

On Monday I sent the following email to family and friends:

This morning I met with my oncologist and got the absolute best early Christmas gift one could ask for . . . a clear scan!! Which means, there are no signs of cancer left in my body!!!!!! Even that pesky spot on my sternum which has been in the back of everyone's mind (at least mine, my family and my doctors) has vanished. Completely.
This news does not mean I get to skip anything else. I will still be on hormone therapy for five years (not a fan of hot flashes) and I will still have to go through radiation starting in January but all of that is just to keep it from coming back. I can now say I HAD cancer - past tense! Which means, with all of your love and prayers and support and thoughts and whatever - I have kicked cancer's ass and can go celebrate in Patagonia! I leave next week :)

And now I'm off for my tattoo . . . don't worry, it is part of my radiation simulation.

Have an amazing Monday!!
 
***************************
 
Today, I sent the following update:
 
First of all, let me tell you straight away that no, I have not yet recovered from Monday's amazing news. I feel a significant burden has been lifted. A burden I would have denied was there a week ago and yet its absence has left me floating.

Yes, I was anxious waiting for the results of my last PET scan but part of me was resigned to there being one more step left. I assumed that spot on my sternum that first showed up on a PET scan in May would pop up again and there would be decisions to be made about how to treat it. I just didn't expect to be set free so soon. As usual, I still asked my oncologist a number of questions and she had me make an appointment in two months and reassured me that I can always call with questions before that time if I need to.
Of course the first call I made as I left the hospital was to my mother as I tried to figure out where to go. My next appointment was still a couple of hours away and I hadn't planned on going to the office but it didn't seem right to go home so I went to my office where I could see real, live people and relay the news. I also sent out the email announcement and posted it on Facebook. I wanted everyone to know that I no longer have cancer. I collected some hugs in the office and then told a crowded elevator that I was cancer free after someone innocently asked how I was feeling. I think people cheered. I was hugged. Most of the people in the elevator work at my firm - a couple do not. I was beaming. In the lobby I didn't just nod and say hello to co-workers walking into the building, I shared my news and then floated out the door. In the subway on my way to my next appointment I couldn't stop smiling.
I think I was worried at some point about the radiation simulation because I remember Googling it and reading about possibly getting fitted for a mask to keep my head in place if radiation to the brain is necessary. I was also told I would be tattooed and I wasn't really clear on the details of that process despite the fact that this is the part I have been telling people about. But when I walked into the reception room I felt absolutely carefree. I was introduced to a music therapist who explained a study they were conducting that sounded similar to the one in which I participated during chemo. But this time, unfortunately, I was told I was chosen for the control group and would not get any music during my simulation. But I still had to complete some surveys and talk about my anxiety level. I told the guy right off that I wasn't even thinking about the simulation because I got such good news that morning and he congratulated me and then had me answer some "I feel vulnerable," "I feel strong," "I feel anxious," "I feel silly" questions on some scale and then I had to color any pain or tension or anxiety I was feeling on the outline of a person. I did this same coloring activity during chemo and never understood it. What is the significance of me randomly choosing red, blue, orange or green to color in the tension I always carry in my shoulders? The therapist gave me a short little lecture on how some people cope with new things by acting strong and confident, I agreed with him but said this time my strength and confidence is real.
I was then passed off to a radiation tech who showed me a little movie about the simulation in the freezing cold room with the giant donut shaped MRI machine that looks just like the fancy ones in that GE commercial where the cancer patients meet the employees who made the "machines that saved their lives" or something like that. And sure enough, this machine was made by GE. After the movie I was directed to a changing room and told to remove all my clothing from the waist up and to put the gown on with the opening at the back. I was also advised to empty my bladder. When I returned to the dressing room I pulled a blue hospital gown off the stuck on top of the locker (where I was instructed NOT to leave my belongings) and struggled to decide what to do. When I was told to put it on with the opening in the back I had envisioned a certain type of hospital gown that is basically reversible in terms of having the closure in the front or back. But this one . . . it was the wrap style type that seemed incomprehensibly ridiculous if it was put on backwards. I had also seen a couple of women in the hall with this same type of gown on and they were not wearing theirs in reverse. So I put it on the normal way.
I left a beanie on my head for some warmth and returned to the chilly room. The tech took my picture and I asked if I needed to remove my glasses and she said I could decide. I took them off and waited. My doctor came in beaming and gave me a big hug after she said how happy she was to see the results of my scan. This is only my third meeting with this doctor and that enthusiastic reaction was more than enough resassurance that I had indeed selected the right doctor to oversee the last of my treatment. She told me she would be reviewing all the MRI pictures in the next room and wished me luck before she left me with two techs I will endearingly refer to as Tweedle Dee and Tweedle Dum. I don't mean to disparage them in any way, but the situation was comical.
I sat on a chair and snapped a couple of photos of the room while they retreated to a corner where they commenced a fairly complicated art project. As it turns out, the tattoo is the least artistic portion of the simulation. Since it is vitally important that the radiation is repeated in exactly the same spot, with the body in precisely the same position each time, they were making a mold of my body. Not my whole body, just the upper half so each time I go to get treatment I will have to contort myself into the same position in this specially crafted mold. Tweedle Dee and Tweedle Dum had the type of familiar repartee that only comes after working in close proximity for a long time . . . or from being family. They half-bickered, half-joked and mostly teased each other as they layed a large piece of bright blue plastic on the floor, halved it and taped it up envelope style with masking tape leaving one open end. While one person held the plastic that was thicker than a garbage bag but still flexible up, the other shook up the contents of a plastic jug which I presumed contained some sort of plaster mold material. She then dumped it into the taped up plastic thing.
I was then instructed to lay on the table and was promptly harrassed about not trusting them by putting the gown on the correct way. I pled confusion and allowed them to put a bolster under my knees as they raised my arms over my head. When they went back to their craft project in the corner I switched the gown the proper way since they were just going to be pulling it almost off me anyway and all sense of modesty about these things left me long ago. You really can't have breast cancer and be shy about anyone actually seeing your breasts.
I returned to my place lying on my back on the table that slides into the donut hole of the MRI machine and waited. While I waited I stared up at the lighted "window" on the ceiling that wasn't actually a window since we were in the basement of a building at Union Square. It had six panes like a window and gave the illusion of looking up at a brilliant blue sky with a couple of puffy white clouds with tree branches arching slightly against the "glass." Two of the trees had bright pink cherry blossoms and the other unidentifiable to me yellow blossoms. It was pretty and comforting. More comforting than the red laser beams I could see on the wall to my right. I was covered with a white sheet which I noted was not heated despite an earlier promise of blankets being warmed for me and Tweedle Dee and Tweedle Dum had me take my arms out of the hospital gown and guided me to slowly lean back into the blue plastic project they situated under my head and shoulders. It was warm to the point of almost being hot and felt really good after the chillyness of the room.
And then it was like I wasn't even in the room as they went to work completing their art project and critiqueing each other's taping styles. My arms were placed folded over my head and I had to turn my head clear to the right with my chin a certain way. It wasn't necessarily uncomfortable or awkward but I hated that I couldn't see anything they were doing. I had one on each side of me taping the plastic to me so the mold could conform to my body. I tried to make a comment once or twice and they either didn't hear me (hard to imagine when they were hovering over top of me) or just chose to ignore me. I was warned when they taped up my surgical scars with something I never got to see that had a wire in it so the scars would be visible on the MRI image. I was getting molded and positioned to their satisfaction and then I was left alone taped into place in the warmth of the mold. Once everyone had exited the room the machine whirled to life. I read the warning on the inside to not stare directly into the lasers and closed my eyes and wondered why the other MRI-like scanning machines didn't have a similar warning because I remember being a little bit mesmerized by the spinning thing inside the machine during past scans.
I believe it took about twenty to thirty minutes for them to get all the pictures they needed but it is hard to gauge time when you have to sit completely still as part of a strange sciency-art project. My left arm was definitely asleep and had reached the tingley stage where I really wanted to just shake it out but I wasn't sure I could move it if I had tried with all the masking tape strapping me in. But even after the whirling airplane noise of the MRI machine was shut down and the techs were allowed to enter the room again, I still had to keep still with my head turned away from all the action. The penultimate step in the art project was the drawing of magic marker X's in three spots around my left breast. I was marked for my upcoming tattoo.
Finally, all the tape was pulled off of me and the mold was pulled out from under me and I tried to shake my tingling arm back into feeling. But before I could leave I had to get my tattoos. I was told it would pinch. It felt like three small shots. Two were barely noticable and one stung a little bit and bled a little. If you didn't know where to look, you would miss them altogether. I actually have freckles that are bigger. And yet, I can now say I have a mysterious tatoo!
After I got dressed again I had to answer some more anxiety-seeking questions with an intern of the music therapist before I was free to go.
I tried to do a little Christmas shopping but I was distracted by my good news. I wanted to stop strangers on the street and inform them how significant December 12, 2011 is to me. I wanted to explain that this is the date that will stand in sharp contrast to April 28, 2011 when I was told "it's cancer" because now it is over. Everything I have to do from this day forward is to prevent the return rather than attacking what is already there.

I went to the outdoor Christmas market at Columbus Circle that pops up there every year in search of a favorite item I will not repeat here because the recipient should be surprised. As I wandered I picked out gifts for my niece and nephew and stopped at a couple of jewelry stands with the idea of giving in my head. But the necklaces I was inspecting cried out with a different purpose. They were lockets with images and messages from old postcards and one read "Be happy for this moment. This moment is your life." The quote snatched something deep inside me and I knew I needed to commerate this day in a tangible way so I purchased it and informed the vendor that I was doing so to commerate my first day of being cancer free. Strangers congratulated me and I fought back more tears of happiness as I put it around my neck. My plan is to put the date and "Cancer Free" on the inside as soon as I find someone with better handwriting than mine to complete the task.

I have since learned the quote is an excerpt of a poem by Omar Khayyam, a Persian poet and mathematician. It is a simple, almost trite statement that can feel almost hollow with too much repetition similar to "seize the day" but without even looking I found a talisman to symbolize the end of a nearly nine month journey through illness which has changed me in ways I cannot yet comprehend. But one thing I can comprehend right now is that this is a moment I am truly happy with because it marks the beginning of a new life of health.

Friday, December 09, 2011

waiting

At some point I will stop marking time in terms of weeks post-chemo and days until Patagonia but today I am 9 weeks and two days past my last chemotherapy treatment and 14 days away from my long-anticipated trip to Patagonia which is a comforting shift in balance as I slide toward an adventure and away from illness. October and November were rough months for me. It was almost as if I went through all of chemotherapy without understanding what everyone was so worried about. . . . and it all caught up with me. It didn't seem quite right to have the shock and fear and sadness of having cancer settle onto my shoulders just as I was putting the worst of my journey behind me. But there is something unsettling about leaving behind the defensive position of attacking the cancer as my body exhibits delayed reactions and attempts to return to some form of normalcy that don't feel quite normal. This in between period is what messes with my head and leaves me with raw emotions.

I should back up slightly and clarify that I am steadily improving and while I was home over Thanksgiving I felt I made some significant leaps forward in terms of energy levels. Before I went home I had difficulty leaving the house for more than three or four hours at a time. I would return home feeling leaden and something far beyond tired. My whole body longed to retreat into hibernation but sleep was not readily restorative so I allowed myself a goal of just one thing a day. And sometimes that one thing was a walk to the store and back. But while I was home some of my missing energy snuck up on me and I managed to do things I have missed. I say it snuck up on me because it arrived so suddenly. My first day at home I decided to go snowboarding but allowed myself time to sleep late and take my time getting to the mountain. Delta forgot to send my snowboard on the same flight as me so I had to rent gear which added more time. I won't pretend I am the type to get to the lift as it opens at 9 am with any consistency but I usually like to be making my first turn by 930 or 10 but that day I don't think I was on a lift before 11 am. I purchased a 20-ride pass which could be used at any time throughout the season and half-way down my first run as I sat in the beautiful, fresh powder I fought back tears. I had no energy. Everything hurt. My body wasn't listening to what I was telling it to do and I worried I wasn't ready for this. With great effort I managed to get myself vertical again and down the rest of the mountain for a rest in the lodge. I reminded myself there was no hurry, I could go at any pace because no one was watching or waiting. I managed four runs that day.

But I went back the next day with my own equipment and was greeted with the type of blue sky you pray for. On my own snowboard I doubled the prior day's runs and strayed onto tougher terrain - including a black diamond off the newly opened Powderhorn lift, just to show myself I could do it. And I did. Two days of exertion in a row meant a lazy day before Thanksgiving spent primarily on the couch as my mom and sister shopped, prepped the turkey and made pies. Oh, how I wanted to rouse myself enough to make pie but I never managed it. I reminded myself it is all about focusing on where I want to exert my energy and the next morning I had a 5k to run! And I did it. I had 7 wonderful people who tore themselves away from their own thanksgiving preparations to run with me. My sister, her husband and I had run our first turkey trot together two years prior but this time instead of trailing behind them on my own I was flanked by two long-time friends. Their company fueled my resolve to run as much as possible and just as I was talking myself into one final push for the finish line we saw the rest of our group lined up a block or two from the finish cheering us on and we finished a handful of seconds shy of the 40 minute mark. Such a good milestone to hit surrounded by people I love.

My last full day in Salt Lake I returned to Solitude Mountain Resort which, in my opinion, is one of the most beautiful places on Earth and never fails to put a smile on my face. The mountains do something else for me, they refuel my spirit. My mind clears, other fears, concerns, stresses and distractions fall away and I fill up with love and awe and gratitude for everything I have. The mountains have always restored me this way and sometimes I wonder how I have managed to live 2,000 miles away from them for so long. On that day, for the briefest time, I stopped focusing on my own limitations. I stopped worrying about what was still to come and I stopped counting the days and weeks ahead or behind. I sat in the moment and breathed the crisp winter air, felt the warmth of the late November sun, pointed my board downhill and glided over the snow and felt the rush of the wind in my face. I no longer felt like I was a conspicuously bald chemo girl. I was myself. Energy and stamina had crept their way back into my body and were promising to make a longer stay.

I still get tired. I still have to pace myself. I still get unbelievably frustrated with my own limitations. But, I know it is getting better. Of course, my impatient nature doesn't always allow myself to recognize this improvement. And some things are still very difficult to accept. Chemo ravaged my body in many ways with which I am still forced to cope. My fingers and toes still have remnants of neuropathy leaving my sense of touch oddly different. Sometimes I feel a slight electric charge shoot down the soles of my feet. I have to keep my nails extremely short so they don't tear away and they are ringed with white lines I think correspond with each round of toxic chemotherapy. I have gained enough weight that even the largest clothes I own are significantly strained or don't fit. My hair is slowly growing and filling in bit by bit but my eyebrows and eyelashes continue to fall out. Although today, for the first time, I noticed tiny little sproutlings of eyelashes growing on my bottom lids. Those were the first lashes to go so I'm hoping the top lashes will start growing soon as well. Without makeup I feel like a different person is returning my gaze in a mirror. There is a certain blankness to my face without the definition of my normally overgrown brows and lashes. While I appreciate the reassurances I receive from friends and family, I can't say I will ever feel comfortable with this look and the extra weight exasperates it all for me. I'm tired of baldness as well but honestly, I could endure that a lot longer if I could just have my brows and lashes back and return to my normal size.

While I was home for Thanksgiving I asked a photographer friend to take photos of me. I thought it would be nice to have photos of me at the end of treatment without the makeup. But when I got the photos back I was not prepared to look at the woman staring back. I felt an alarming disconnect I was not prepared for. Somehow seeing myself caught looking so vulnerable made it all so very real. I looked like all those other cancer patients I have been seeing all these long months from whom I thought I was so distinct and different. I have posted a few of the photos because I am ultimately glad I had them taken despite the fact my vanity screams they aren't actually of me. I still have a lot of healing to do that goes beyond regrowing hair.

In terms of where I am in the overall process, I had a PET scan this last Monday and am anxiously awaiting the results. I see my oncologist Monday morning and my radiation oncologist Monday afternoon and I'm hoping between the two appointments I will have some answers for myself. Both doctors are still being very cautious about my sternum and the spot that was biopsied back in May, which I appreciate. I think we are all anxious to see what has become of that pesky spot. Whatever has happened, I look forward to having some sort of answer on Monday. After that I can focus on final trip preparations and leave the worrying about radiation for January when I return.

Tuesday, November 15, 2011

pathology results!

Late yesterday afternoon I received a call from a nurse practitioner from my surgeon's office saying she had good news - my pathology came back and my "invasive cancer had regressed" to the point of a few "in situ cancer cells" with the sentinel node that was removed also having a few cancer cells. She was telling me to be happy about these results but, to be honest, I was having a difficult time understanding because all I kept hearing was "cancer cells." So I cried as soon as I hung up the phone.
Then I called my mom. Then I started googling to figure out how this was good news. Then I realized it would be best to talk to my surgeon about it.
This morning I saw my surgeon for the first time since the surgery and after having him explain the pathology report, asking some questions, reviewing the pathology report for myself and giving it all a little time to sink in, I think I finally understand it and can say - I HAVE GOOD NEWS!
What I failed to comprehend when both the nurse and the surgeon were explaining the report to me was they found cancer cells in the tissue they removed. For some reason I kept hearing that I still have cancer cells, not that the tissue they removed had cancer cells. Now that I am over that mental hurdle, I am feeling much more relieved about the news.

Basically, the tissue they removed from the breast (measuring about 4.4 cm) had no evidence of invasive carcinoma and the margins (the 2mm area around the tumor site) are negative. The lymph node they removed contained 0.1 mm of metastatic deposit which means no more than 200 cells. This means Stage 1 cancer. I started off with invasive carcinoma and positive lymph nodes which resulted in a diagnosis of Stage 2b breast cancer. I am told this is a huge improvement and shows chemo did its job.
My surgeon went on to explain that this is better results than he sees in many patients and there is a possibility that I am cancer free right now (YAY!). He also explained that since I am still so close to the end of chemotherapy that there is a likelihood that the chemo is still fighting whatever cancer cells might be left and had we waited a bit longer to do the surgery, I may have had completely clean results. He explained that in the past when the sentinel node still contained cancer cells they would go back and take out more lymph nodes but there have been significant studies which have shown there is no difference in recurrence between the women who had more lymph nodes removed and those who didn't. So I will go ahead and keep the rest of my lymph nodes.

I meet again with my radiation oncologist tomorrow to start planning the last stage of my treatment - radiation - which will be five days a week for six weeks starting in January when I return from Patagonia. In the mean time, I am starting to take Tamoxifin, the pill I will be taking for the next five years to block the estrogen receptors in my breasts. I also have a PET scan scheduled for December 19th and will have at least one or two more appointments with my radiation oncologist before I leave to get everything primed and ready to go to start radiation as soon as I am back. I feel reassured and comforted that I will be seeing my oncologist every three months and my surgeon every six months. I don't have a stamp of remission to brag about yet but I'm definitely starting to feel like chemo and surgery worked and I'm hoping for similar results with radiation.

Thursday, November 10, 2011

lumpectomy, NYC Marathon cheering and that lingering jerk - chemo

I have a few thoughts bouncing around my head lately that I feel like capturing for myself or possibly for anyone out there facing a lumpectomy. I will also probably ramble into the realm of post-chemo life because I'm in need of some writing therapy on that front. I may even share my thoughts/reaction to the movie 50/50. Yes, I saw it. By myself. And I recommend it.

First, I was skeptical when my surgeon told me the "procedure" would be pretty simple, especially since I knew he would be removing my sentinel node. If you do any amount of googling, you will discover that removing any lymph nodes will almost certainly result in lymphedema - fluid retention and tissue swelling in the arm in which the lymph nodes are removed. According to the fear mongering internet, this can result in a loss of range of motion in the arm and even permanent disfigurement. My surgeon reassured me (a number of times) that he was not concerned as this is now very rare when only the sentinel node is removed and that they monitor it very closely.

At any rate, tomorrow will mark one week post-lumpectomy and other than some tenderness at the point of the incisions, I feel pretty much recovered from surgery. I have two incisions between 2-3 inches in length. This may not seem like a large incision for those of you with more ample breasts but for me, the incision on my breast covers the whole left side and the one closer to my underarm (for the removal of the lymph node) covers most of that space as well and is conveniently located in precisely the location where all bras end. Meaning, whether I wear a regular bra (just managed to do this successfully for the first time today) or a sports bra, the seam rubs right at the incision point. Not exactly comfortable. But not terribly painful at this point, just irritating. Also, the rubbing resulted in the steri-strip on that incision falling off much earlier than my other steri-strip which is still firmly in place. After consulting my post-op instructions which indicated I should wait for them to fall off or let the surgeon remove them, I peeled the last remnant of it off this morning to get my first real glimpse at my scar.

It isn't pretty. But it isn't hideous either, despite the fact that I have been referring to my breast as "franken-boob." The worst of the bruising has changed from the blue-black-purple phase to a yellow-violet phase.

Oddly enough, for the first time in my life, wearing a bra has been more comfortable than not wearing a bra. Yes, even with the rubbing issue. I had read this pre-surgery and purchased a zip-front sports bra since I wasn't sure how easy it would be to maneuver my way in and out of a sports bra. This was my best pre-surgery planning. I wore that bra day and night for the first three days straight. When I took it off for the first time Saturday night to shower for the first time, I couldn't believe how heavy my breast felt when set free. It pulled a bit on the stitches and was just plain uncomfortable.

I realize this is all very scattered but I'm just going to let this spill out as it comes to me and mention here that pain wise, I only really had pain the day of surgery. I took a Tylenol 3 shortly after getting home, mostly because I didn't want to get to the point of pain and then took one more before bed - again to stay ahead of the pain and to help me get some sleep. Saturday I may have taken one or two extra strength Tylenols and possibly one on Sunday but after that I haven't had any pain to complain about.

I stayed home all day Saturday but got really bored and restless and when my mom and sister returned from shopping (which I encouraged them to do, they didn't abandon me), I was irritable and picked a fight with my sister for no reason other than frustration. Frustration that I am not myself and incapable of being myself. Then I blamed her for not cutting me some slack and having patience with my terrible moods. Not my best moment.

Sunday all was better and we watched the New York Marathon for a bit of cheer and inspiration. We cheered the elite men and women and the wheel chairs run along Central Park South for their last mile. It was amazing. We took a short break to have brunch with my mom (who, incidentally, ordered the best pancakes I have ever eaten!) and then returned to Central Park South to cheer on the masses who were now constantly running by. I didn't know how long I could last and whenever we were near any kind of tight crowd I got a bit anxious, just afraid someone was going to knock into me. My sister stayed on my left to protect me and we found a good spot where no one jostled us. Just as I was getting tired from yelling at strangers, I saw someone I knew run by! He was one of three people I knew running and I didn't expect to see anyone since I hadn't made any plan. I yelled his name and he glanced over his shoulder as I clapped the big balloon clapper things (no idea what they are called) at him. This made me want to stay longer in the hopes of seeing his sister, a friend I was hoping to see. Unfortunately, my stamina didn't last that long. My sister encouraged me to head home before I went past my tolerance level.

As a result of Sunday's exertion, I spent most of Monday sleeping. My mom and sister ventured out to Ellis Island and shortly after they left I was struck with that weird eye-closing headache that forced me back to bed. I didn't get up until 2 pm.

Chemo and surgery may be behind me but real recovery from chemo is still ongoing. I get worn out after about 40-50% effort of what might be deemed my "normal" and I need about 9 hours of sleep a night to even have the energy for that 40-50%, but this is slowly improving. Tuesday was the last day my mom and sister were here and the weather was unbelievable - around 70 degrees in November! We went out to do some shopping and walking and cookie purchasing and luckily for me the first store we went to conveniently sold bras because my decision to wear a normal, underwire bra was a bad one. The bra dug in all the wrong places and didn't compress the way I had become accustomed to. So I bought two more sports bras that turned out to be super comfortable. Today I went into the office and couldn't bear the idea of wearing a sports bra to work so I dug out the one bra I own that doesn't have under wire and managed to tolerate it for the 5 hours or so I was out.

I went to the oncologist yesterday and expressed all my frustrations with the lingering side effects and the after effects of chemo. My number one complaint? Why had I suddenly gained ten pounds since my last chemo? I am now back up to the heaviest weight I have ever been and the only time I was here was back in May when I was giving myself hormone injections for my egg retrieval. She pointed out the obvious - I was eating about 2/3 my normal amount of food and now I am back to eating my normal (and sometime more than normal) portions but not exercising the way I used to so my metabolism was thrown off. Plus - wacky hormones. Not to mention all those ridiculous chemicals that were pumped into me for months. The hardest part is everyone has it in their head that chemo patients lose dangerous, scary amounts of weight. But that isn't the case for everyone. Chemo is such a roller coaster and everyone's body reacts so differently that weight gain is actually a very common side effect. I was actually happy that I was more or less maintaining my weight throughout. There was a point in August when I was still adjusting to Taxotere and the thrush that came with it when I got down to my thinnest point and worried that two more rounds of chemo would leave me thinner than I wanted. But for some reason, I gained weight with the next two rounds and finished on October 5th at about my "normal" weight, meaning the weight when I want to lose 10-15 pounds.

One of the uglier, unmentionable chemo side effects I experienced was extreme constipation. I think I went about a week at one point without a bowel movement. Painful, yes. And bloating, gas, abdominal pain and diarrhea usually followed. Those last two rounds of chemo these side effects hit harder than early on and I think that is why, even without eating much, my weight came back up a little. But honestly, I feel like the massive bloating and these extra ten pounds are like a giant, last "F*#@ You!" from chemo. A parting gift of sorts. Combined with the very emotional un-tethering from the routine and schedule of chemo treatment, bad days, good days, rinse and repeat, I've been struggling more in the last few weeks than I ever have. I'm not finished yet. I still have cancer. No one is telling me I'm in remission yet. I still have radiation treatment ahead of me. I am still bald. I am still losing my eyelashes and eyebrows. I am still tired all of the damn time. I am still not well enough to go back to work. I am more alone than I have been since this all started and now I feel fat.

Cancer is finally crashing in on me, around me, through me. I am realizing there is no going back to "normal." That life I had back in April is over, it is forever behind me. Yes, there will be a new sense of normal once this is over but my innocence is gone. I never seriously considered cancer even a remote possibility for me. Not now, in my 30s while I am single. Before I even had a chance to "settle down."

A couple of weeks ago as surgery loomed just ahead of me and I struggled to find pants that fit, I snagged one of my odd fingernails on a drawer. I have been keeping my nails really short as the top layer of several of them have been pulling away from the nail bed and they all have several white rings and ridges on them. In the last month or so of chemo my nails started getting really sensitive and I worried about losing them. One pulled off several weeks ago but it was relatively painless. But this one I caught on a drawer was bleeding and hurt. A lot. I was trying to get out the door during a freak October snow storm to make a bus to visit friends upstate. But everything was conspiring against me and I ended up missing my bus by 3 minutes.

I nearly collapsed in tears at the Port Authority. I couldn't face trying to get another cab in that terrible weather so I went across the street to the movie theater and bought a ticket to see 50/50. I knew I was already an emotional wreck and I wanted to wallow in it. You may question this decision but honestly, I have only allowed myself a few brief glimpses of these feelings and I just needed to dig around in them for a bit in a dark movie theater.

The movie was perfect for me at that moment. I cried, yes. But mostly in a good, cathartic way. I also laughed. And tried not to nitpick details I felt were unrealistic. It was my first glimpse at a cancer experience I could actually relate to. I've read books. I've read blogs. I've read articles. I've watched movies. I've even spoken with a few people. Nothing rang true for me. The feelings people expressed at diagnosis did not resonate with me. Various people's experiences with chemo either left me feeling like a giant baby for not pulling it together and trying harder or made me feel guilty for slipping through the whole process relatively easily.

But mostly, I have found myself secretly resenting people with a built-in support network. Sure, it has to be hard to continue to take care of kids while also taking caring of oneself but I can't help but think those people also have a purpose, someone to get well for. I am not complaining about all of the people who have been there for me but ultimately, as a single person with no one person to rely on, it is hard not to have a little resentment towards those who can turn over some of their care to someone else. I have been unbelievably blessed by people in my life willing to step up and help me. But I have had to organize all of it. And I've had to learn to rely on people who are not in my close circle which ultimately takes more effort on my part. There are very few people throughout this process with whom I can absolutely let down my guard and let in. I constantly feel the need to reassure everyone around me that I'm doing great and improving and getting better. To the point that I realize many of those people who only see me periodically through my treatments believe I've just sailed through it all and pretty much all better now. Especially since I don't have that gaunt "cancer" look they expect. Maybe if they saw me in the morning when my face is extra puffy, before I put makeup on for color and fake eyelashes to look like a person, they would realize it still sucks. It isn't over just because you can't see it.

A couple of scenes in the movie truly resonated with me. In one, the guy is sitting on the couch exhausted and his phone rings. The caller ID shows it is his mom and he doesn't pick up. The look of fatigue on his face is one I related to so well. She calls his cell and he picks up. It is hard, as an adult, to once again be reliant on ones parents. It is also difficult to place this kind of burden on anyone, especially my parents. Especially my mom. In another scene, the guy loses it and just gets angry and yells at his friend.


There is more I wanted to share about the movie but, at this point, my mind is turning to mush and I'm having a hard time forming complete thoughts. So, in an effort to get myself back into writing, I'm going to go ahead and publish this without attempting to fix the rambling, stream of consciousness mess of it all.

I'm tempted to give some reassurance here at the end that all is well and I'm just great and all of that. But that isn't entirely true. Yes, last night I went for a run and felt so much better to get out of my apartment and out of my head. And then this morning I worked out with my trainer and told her I was ready to lose the weight and be strong again. And I felt better. But that doesn't mean the darkness and loneliness don't creep in at night when I'm alone trying to pass the time until my next doctor's appointment or social outing. The hardest part about realizing you may be struggling with depression is doing something about it. When I feel terrible I have no energy to research options and when I feel good I don't feel I need to worry about it. This, right now, is the worst part of cancer.

Saturday, November 05, 2011

surgery


My last chemotherapy treatment was four and a half weeks ago and while my body has been slowly recovering little bits at a time, I am nowhere close to feeling recovered. Which means now the real mental test has started. Of course I had some concerns heading into surgery but I coped with that the same way I have coped with all of this, by researching lumpectomies - the procedure and recovery. On the surface I had convinced myself the surgery was no big deal - just like my surgeon told me. But early this week, as my surgery date grew closer, I stopped sleeping. It started to occur to me that maybe it isn't the actual surgery I was anxious about, it was what the surgeon might discover once he opened me up. I've also started realizing that recovery from months of chemotherapy takes longer than four weeks. Much longer. I don't have a lot of significant side effects but there are a number of lingering oddities, more specifically, and most frustrating, is the fatigue. A word I don't think I ever actually understood until now. Fatigue is not a synonym of tired. My fatigue is teamed up with gravity to just pull me into the earth with dragging feeling that can lead to dizziness and almost total shut down if I overexert myself. I can rest up enough to get out of the house and the energy of being around friends or co-workers will boost me up for a while but when the crash comes I have to retreat to my bed. A half a day at the office wears me out more than working a week of late nights and back to back all nighters. I want so much to bounce back and get past the fatigue but it does not work that way. I guess when the three phases of chemotherapy, surgery and radiation were outlined for me I just assumed the four weeks I was allotted between my last chemo treatment and surgery for "recovery" meant RECOVERY! When in fact, it was just enough recovery to give me the strength for surgery, that is not the same as my 100% normal self. To be honest, I'm probably operating at about 50% of normal. I can give a big push for certain events but I have no stamina and when I crash - I crash pretty hard. I still need to work on patience with myself. I tell you all of this to give some background on my mental state leading up to surgery and also to give you a preview of my recovery which I think will be more chemo recovery than surgery recovery.

My mom and sister arrived on Wednesday night and Thursday I felt like we had to fill the day with fun things because I was afraid of being wiped out even more for the rest of their stay (which is kind of the purpose of their stay to begin with!). We managed the important things - we went to a bakery on the Upper West Side with the greatest cookies ever (Levain Bakery if you are interested), went to the hospital for my isotope injection, did a little shopping, picked up some soup for dinner and I was beyond worn out. No stamina. No endurance.

The isotope injection was mostly uneventful. My surgeon had explained I would need to report to the Nuclear Medicine department of the hospital to get this injection of isotopes so he could locate the sentinel lymph node for removal. What I should have realized, or perhaps I should have asked, is where they would be giving me this injection . . . since the purpose was to follow the path the cancer would take out of the breast I suppose it is implied that the isotopes would be injected into the breast. I just wasn't focused on this part. And as it turned out it was kind of awkward and a little painful. At this point I really don't have any shyness about all the doctors and nurses who need to poke, prod and inspect my breast but this particular doctor happened to be the voice doppelganger of a male friend of mine. They don't necessarily look alike but lying on an MRI table with my arms over my head and the doctor standing behind me, I wasn't looking at him as he talked me through each step he was taking and I giggled and felt a little mortified inside my head (and no, I am not saying who this male friend is). The injection hurt since it was directly into my breast but it wasn't just the needle that hurt - the isotopes stung as they were slowly plunged through the needle. But I've been through worse and it was over quickly so I can’t complain. I had to wait thirty minutes for it all to seep in or whatever and then they did a brief scan to make sure it was working. This particular MRI-like machine had a plate that lowered over my chest and head and as it got closer and closer to my nose I kept picturing that trash compactor scene in Star Wars and worried that the technician would accidentally lower it too far and squish my face. Happily she performed her job well and stopped it a few millimeters from my nose. 

I was scheduled to report for surgery at 7:45 am so Thursday night I took an ambien at 10 pm to get plenty of sleep and not have my nerves take over. But I underestimated my nerves and despite the sleeping pill, I did not sleep at all. And I don't mean I would sleep for a bit and wake up, I mean I never fell asleep. Actually, I did finally fall asleep – sometime between 530 and 6 am when I had to get up at 7, so I probably slept just over an hour. It was terrible. And it also meant I felt rotten walking out the door for surgery. When I don't get enough sleep my eyes get especially sensitive and do this weird thing where I cannot keep them open and I get these waves of pain trying to force all light out like I’m on the verge of a migraine but I don’t actually get the headache. I don’t know how to explain it but it is really awful. And without eyelashes my eyes tear a lot more than usual so I was a mess, dabbing a tissue at my eyes and trying to keep them open.

The surgery did not take place at the hospital, but across the street in the same building as my surgeon's office and the radiology clinic. On Thursday, as we sat in the Nuclear Medicine waiting area I created a bit of an expectation with my mom and sister when I told them how beautiful and comfortable my surgeon’s office is – not like the sterility of the hospital. They never got to see the surgeon’s waiting area. Instead, at 7:45 am we reported to the 4th floor Ambulatory Surgery office as instructed. When I opened the door I thought I must be in the wrong room. Or building. Or perhaps I had unwittingly walked into the movie Joe Versus the Volcano somehow – the scene at the beginning where Tom Hanks sits in that terrible little office with the flickering lamp. Instead of a hospital, we appeared to have walked into the waiting room of an auto repair shop. The woman at the metal desk to my right was immediately abrasive and before I had a chance to tell her why I was there or even figure out for myself why I was there she asked if we were all together and as we nodded she informed me “you only get one person.” I was already a wreck physically and emotionally from not sleeping and was not prepared for this level of surliness. I was also unprepared to send either of them home after they flew across the country to be with me for the purpose of waiting there with me and for me.

The room was uncomfortably small with the utilitarian desk filling the space to my right and six chairs with stained cushions in a small u-shape crowding the rest of the room to my left. There was barely room for the three of us to stand at the desk but I wasn’t sending either my mom or my sister home. I think I asked where they were supposed to go and she begrudgingly allowed them to both stay since there were three empty seats. Actually, there were two open seats and one seat piled with someone’s stuff. My mom and I sat in the two open seats and a man with long red hair that appeared to have been permed slowly moved the piles and piles of stuff he had out of the chair next to him. I just wanted to close my eyes and fall asleep. Or better yet, I wanted to skip ahead to the part where the anesthesiologist knocked me out. Instead the surly woman at the desk kept making me get up and down to hand over my credit card or sign something or just to annoy me. The room was uncomfortably quiet with the other two women waiting sitting in what felt like a shamed silence. At one point one of them answered her phone and the other tried to shush her up (I think they were afraid of being ejected by the woman behind the desk).

A very nice nurse rescued me from the tiny room to ask me a few more admission questions and she told me I could just keep my eyes closed. She then had me go in another awkwardly small room with a few lockers and two doors and told me to change only from the waist up. This puzzled me as I was wearing jeans and I couldn’t imagine I would be keeping them on for the surgery. She explained I would be taking the elevator so I would change out of the rest of my clothes later. The lack of sleep made me very foggy and I wasn’t clear on the fact that I would be returning to this same little room and I kept thinking I would be leaving my jeans and shoes in some other locker on another floor and apparently I muttered something about this to my sister at some point causing yet more confusion.

Once in my two hospital gowns – one with the opening to the back and the other worn over it like a robe with the opening to the front – I was introduced to an orderly who got me a warm blanket and draped it over my shoulders and together we walked back through the strange miniature waiting room and collected my mom and sister and took the elevator upstairs to the radiology clinic where I had that first mammogram that changed my life. A technician named Anna, introduced herself and took me into a room while my mom and sister waited in the very normal waiting. Once in the room I realized I was getting another mammogram. In all my research and questions this part was never disclosed. Or maybe I glossed over it or assumed when it said “mammogram or ultrasound” I was getting an ultrasound, but that was probably just wishful thinking. This was the worst part of the whole surgery.

Back when I had my biopsy in April, they inserted a tiny little “clip” into the tumor to aid in monitoring the tumor or in finding the location of it should it disappear. Anna explained the whole process and I think I almost passed out. She moved the mammogram machine this way and that and then had me sit in a chair (because I was clearly not capable of standing on my own) and she manipulated my breast into the machine and flattened it out. I then had to sit there, with it squished, waiting for the doctor to get the image in another room!! I was told not to move. I just squeezed my eyes shut and wished it all away. But this was just the beginning. Once the radiologist joined us in the small room (where I was still not moving or really breathing with my breast squeezed in the vise) he gave me a shot to numb my breast locally, then, once the area was mostly numb (more waiting with the squished boob), he injected a thick needle into my breast. With the needle still poking into me, they squeezed everything even more and took another picture and told me to hold still. I could glance down and see this needle sticking out of my breast and suddenly I was no longer tired and my eyes were not feeling so awful and I had this vision of them squeezing that machine too far and causing the needle to pop out and fly across the room. More fidgeting with the machine and the radiologist adjusted the needle once or twice to get it lined up with the clip and then he somehow used the needle that was already there to insert a long metal wire which was significantly thicker than the fishing line I was envisioning but smaller than the cable wire I initially thought of when my surgeon first explained the process. I thought I was done but the machine was once again moved around and converted and I was shifted into another possession for a couple more pictures to make sure everything was in the right spot – meaning a few more vice grip looks and then the wire was wound up a few times and taped into place with gauze and I was sent back to the waiting room.

After a short wait I was handed the films and we waited a bit longer for the orderly to come back and collect us. My mom especially liked this woman not just because her warmth was such a sharp contrast against the receptionist downstairs but because she sincerely told my mom she looked like our sister, not our mother. My mom does look young but doesn’t always believe it when we tell her. We were returned to the original waiting room where all of the seats were now empty but the red-haired guy was still there only now he was standing and talking very animatedly with the receptionist. Now that I could keep my eyes open I looked around the room some more and was even more shocked by how dingy, dark and bizarre it was. There were some Monet prints hung a little too high on a couple of the walls along with signs about patient rights. My surgeon is listed in New York Magazine as one of the top breast surgeons in the city and his office has photos of celebrities, is this where the fabulous people of New York have surgery? It is hard to imagine. Or maybe this is just one of those great equalizers. I just would have thought the great equalizer could have been nicer than the waiting area when one gets an oil change.

The surgery was the most uneventful part of the whole day – probably because I don’t remember most of it. The anesthesiologist explained that she would give me a sedative and that I would probably go to sleep but I wouldn’t necessarily be out completely. I told her I would prefer not to be awake and she said not to worry about it since I wouldn’t feel anything. She was right. After saying goodbye to my mom and sister, I was escorted into the operating room and the surgeon helped me onto the table while what seemed to me a large number of people bustled around the room. They put an oxygen mask on me and I was out. Except I have some strange memories about trying to talk during the surgery so I was clearly not out completely. Who knows what I said but I think I tried to tell them I knew they were cutting me open . . . or I was trying to ask them questions about what they were doing. I don’t know. But I did have a blue drape thing over my face because I remember opening my eyes at one point. Or maybe I didn’t since how could I have been talking with the oxygen thing on my face? At least I didn’t feel anything, I just worry what I may have said with all those drugs in me.

I woke up annoyed by the little oxygen tube in my nose but feeling fine otherwise. By the time I was completely awake my mom and sister were there with me and I was given apple juice and graham crackers and slowly sitting up. We didn’t wait too long before they told me I could change to go home. After I had changed my surgeon came to see me and told me how well the surgery went – no cancer, just normal breast tissue. He removed the tissue around the clip and my sentinel node but none of it appeared to be cancerous. It takes a week or so to get the final, definitive results from pathology but ultimately this is the best news we could get. He also commented that he thinks it will become standard to have chemotherapy before surgery because it is so successful. He also said (and I don’t think I realized this before) that I would have had a mastectomy had I chosen to have surgery instead of chemo back in May. I remembered him telling me surgery would be easier if I did chemo first but I don’t think I ever equated that with having a mastectomy. Ultimately, I’m happy with the result and pleased with the care I received – despite the weird waiting room.

We walked home after the surgery but I should probably clarify that the walk was very short and completely down hill. I live one long avenue block and two short blocks from the hospital and we walked very slowly with my mom holding one arm and my sister holding the other. I was home around noon and spent the rest of the day watching tv, sleeping and being taken care of by my mom and sister who fetched me food, water and timed my 30 minutes of icing altered with 30 minutes of non-icing. I didn’t have much pain as I took a Tylenol 3 and the ice and compression of a sports bra make it feel better as well.

Today I am still tired but I feel like that is just my normal state of being these days. The good news is I did manage to sleep all night last night which was a relief. I have a little bit of soreness today but nothing warranting pain medication since it is relieved by an ice pack. I am looking forward to tomorrow when I can remove the gauze and shower. I’m also one of those people who likes to look at what has been done to me so I am looking forward to removing the gauze to see how big the two incisions are.

I am also looking forward to watching the New York Marathon tomorrow with my sister to cheer on other people overcoming physical obstacles for a little inspiration. I still have a pretty long road ahead of me for physical recovery and I still have the final step of six weeks of radiation to complete so while I’m ready to celebrate having two out of three steps behind me, please be aware I still have a long way to go before I’m back to my self. I have high hopes for myself but I’m also having to remember to temper those expectations a bit with the reality that months of chemotherapy doesn’t disappear in a few weeks. As always, I appreciate everyone’s love and support and will continue to be a bit needy in that area for a few more months before we can definitively say it is behind us.

Thursday, October 27, 2011

Post-Chemo, Pre-Surgery

I realize it has been a long time since I posted. I will just blame chemo and be honest that the last couple of months have been the worst - not just physically but mentally. I have posted a couple of updates I sent to my family and friends that I failed to cross-post here for those of you kind enough to still be checking on me and who want to know the ins and outs of the past couple of months. Below is the update I sent out today. As I pulled up those posts I realized there are many other things I've been wanting to capture in words for myself that I have failed to write about so maybe as I gain more energy and as I pull myself into a more regular routine I will fill in the gaps. For now, here is the latest on where I am at today - three weeks beyond my last chemo treatment.

I am now just over three weeks past my last chemo treatment and it is starting to sink in that I am done. I have had a lot of post-chemo doctor's appointments and follow-ups and I feel like there is so much I want to share that I don't know where to start. So I will start with some really good news.
Yesterday I returned to the same radiology clinic for a mammogram where I began this journey back in April. It was a little surreal to be sitting in the waiting room filling out paperwork and remembering the thoughts and fears and concerns I had back then. This time I knew I could only get neutral or good news. The lump that led me to that first mammogram four months ago is no longer palpable which means chemo shrunk it, by how much we didn't know but all the doctors I've been seeing recently (my oncologist, my surgeon, the radiation oncologist I met a couple of weeks ago and her physician's assistant) have remarked on my excellent clinical response to chemotherapy. Plus, there was no unknown. I knew what was coming. Although I must say I felt conspicuous in that waiting room. Instead of being surrounded by other cancer patients in various stages of treatment, I was waiting with women whose worst outcome for the day could be to end up like me. I felt like a reminder sitting there with my bald head. After I was called into the second waiting room where I had to change into a pink gown and sit in a nearly refridgerated room I pulled out a wrap to keep myself warm. An older woman commented that I was smart to bring something since it was so cold and I said I learned the hard way as I was unprepared last time. I could tell women wanted to talk to me, ask me questions, make comments. Another woman came out of the changing room in her street clothes and leaned over to tell me she was a three year survivor and asked me how I was doing. Another woman then joined the conversation indicating she was a fifteen year survivor and we swapped treatment stories and chemo side effects and they left me with promises of returning hair and eye lashes. My wait felt much shorter than last time and before I knew it I was back in the mammogram room with a technician wrapping a lead apron around my waist and positioning my left breast between the plexiglass plates and squeezing it in the vice grip. I held my breath and gripped the bar on the machine just as I did last time but it felt like a different view into my future than that first one. Rather than a glimpse at being the first step towards an altered world I envisioned this as a regular checkup I will be doing for the rest of my life to ensure I am never at this point again. Before long I was back in the waiting room waiting for my name to be called for my ultrasound. The ultrasound was also quick and the technician dismissed me without having a doctor barge in and scare me with details of biopsies and surgeons and closer looks at my lymph nodes. No, this time I asked to see the doctor before I left. I wanted to know for myself what they saw in those images. When the doctor came in he was difficult to understand through a thick accent and seemd a bit dismissive and unconcerned. I asked if the tumor had shrunk and by how much. He didn't appear excited to inform me that it wasn't visible on the mammogram (YAY!) and that on the ultrasound it had shrunk to a small "nodule" as he put it. Why he couldn't be more enthusiastic about this excellent news, I do not know, but I was excited. I asked him a few more questions to ensure I was hearing him correctly and he said I still needed to see my surgeon even with the near disappearance of the tumor. I agreed and told him my surgery is scheduled for next week and I wasn't planning on skipping that step.



Then I called my mom. And my dad. And posted the good news on facebook. I realize there is still a "nodule", whatever that means and that there are still several steps to go before I can be declared in remission or cancer free or whatever it is they will say, but I am spreading this good news because it confirms that I made the right decision to start with chemotherapy. All that pain and inconvenience and side effects have accomplished something. It wasn't for naught. Back when this all started, that first time I met with my surgeon and he asked how I felt about starting with chemotherapy and I asked "how should I feel about starting with chemo?" he told me if we could shrink the tumor I would have an easier surgery. And now, just a week away from that step, I'm looking forward to having an easier surgery because that tumor has shrunk - a lot. I saw my surgeon again on my last day of chemo and he walked me through what would happen with the lumpectomy and once again answered all my questions about how I should prepare and what would happen and what might happen and what could go wrong and how will this effect me and while I realize this is still surgery, I think I'm primarily just fascinated at what doctors are able to do. I mean, I know that fluke things can happen but my surgeon is good and he is confident that this will be pretty easy - especially relative to what I've been through. He will remove the sentinal node from my under arm so I will have two incisions but even that he does not believe will hamper or impair me for long and he encourages me to start my daily activities right away. He also encouraged me to start exercising right away and indicated I will be able to run again about a week after surgery.



Of course, I will update everyone on how all of this actually plays out next week since I have definitely learned that things don't always play out in quite the same manner as doctors predict. For example, you may recall that back in early August when I started my taxotere infusions I was told this would be a lighter, easier chemo drug. Unfortunately that was not the case. While it was good in many ways to be on a three week cycle to allow me time to recover, my side effects grew with each treatment to fill that entire three week with a parade of difficult, annoying or distracting issues. Plus, the cumulative effect of all of those chemicals has flat out worn me out and dragged me down. I was tired of organizing my own care, tired of asking, tired of taking, tired of the simplest thing taking so much effort. I was also growing tired of traveling. I gained so much from my first two trips home to Utah that occupied my "good" weeks that I decided to schedule another and then just one more. And now, having just returned from another long weekend in Salt Lake, I have to say I am ready to embrace a life back here in New York City. Each trip boosted me in some way despite the effort it took to get there and back. At the end of September, just before my last treatment, I was able to attend my ten year law school graduation (putting my wig to use for the first and possibly last time), hike (slowly, with many breaks) in the beautiful fall foilage at Guardsman's Pass, attend the homecoming football game at Utah and catch up with family and a few friends. This last trip I helped pull off a surprise 60th birthday party for my mom with a significant portion of our family that included one of my brothers and his one-year old traveling with my from the East Coast as well as her parents and several of her siblings. The surprise was absolutely worth the sacrifice.



But as much as I would love to continue to travel around and catch up with everyone who has supported me along the way, I have to admit that it will likely be a while before I am 100% again. I went for a run this morning in the wind and a light rain and was reminded as I slowly ran through the nearly empty park along the Hudson River that I'm not going to always be on an up and up and up trajectory - I still have bumps in the road and setbacks that might come. So I fell slightly short of my 2-mile goal. For example, a couple of weeks ago I had some side effects cropping up that had never appeared in the entire course of treatment. Despite the fact that I was coping with thrush (a horrible side effect that burns out my taste buds and makes it difficult to impossible to eat), I was extremely bloated and suddenly none of my pants fit. When I finally called the doctor about it I had convinced myself in the middle of the night that my cancer had spread and this was the sign. I was in a bad spot in my head because I was tired of being sick, tired of the ever changing reactions of my body and feeling extremely disconnected from my own life. When I saw my oncologist I had gained five pounds in two weeks - two weeks when I was probably only eating about 800-1,000 calories a day. I broke down in her office and then apologized because I wanted to continue to be strong but didn't know how to keep carrying this burden because I felt like I was past the deadline and it should all be over. She reassured me that this is normal - the bloating we would monitor but the emotional breakdown is often what comes at the end of treatment because I was feeling unhinged from the cycle and schedule of the chemo. While I wanted to celebrate the end and appreciated all the texts, emails and phone calls to celebrate the end of chemo, it didn't feel over when my body was still reacting and it doesn't feel over while I still don't know if I am absolutely done with cancer. Moving on to the next step is a relief but also scary. I consoled myself with research into the next steps. And feeling my body get a little bit stronger each day helps as well, as long as I allow myself plenty of rest.



Another bright light at the end of the tunnel - my hair is coming back. I'm still bald and the growth is not significant but it is happening. The little stubbles of hair that never fell out are growing and when I run my hand over my head I feel longer, softer hairs instead of prickles. Also, there is a little bit of white downy hair that has cropped up. It is most noticeable in the bright sunlight and from what I have read this is a common sign of first hair growth post-chemo. I am baffled that my hair knew to start growing within about two weeks after my last treatment but happy it is ready to move on. The truth is, I'm tired of being bald. Not tired enough to commit to wearing a wig full time but tired of the novelty of it, tired of the effort it takes to coordinate a scarf or hat or something to put on top of my head each day, especially now that the weather is getting cold and instead of protecting from the sun, I need to keep myself warm. But to be honest with you, I think the reason being bald has suddenly become more of a burden, I think it is because I have lost the majority of my eyelashes. I noticed them falling out sometime in September. I'm lucky that I've always had a lot of eyelashes and that my eyebrows have always been something I've needed to tame rather than worry about filling in. I no longer have any bottom eye lashes and my right eye has about 8-10 lashes left while my left has held on a bit more firmly but is pretty thinned out. When I went to my law school reunion last month I had false eyelashes put on and suddenly I realized where my own vanities lie - I suddenly felt like me again. Not because I was wearing a wig, but because I recognized my own eyes. In the morning especially, when my face is often puffy and more often than not I have dark circles under my eyes, I look in the mirror and I miss the healthy version of myself. Lacking eyelashes I feel more like a cancer patient. I don't see any signs of regrowth there and I'm pretty sure I won't feel like myself until I have them back and who knows how long that will be.



Before I close out on this overly long update (but do I really know how to write anything that isn't long-winded?) I should share one more bit of good news. I met with a radiation oncologist a couple of weeks ago and held my breath and crossed my fingers when I told her the timing of my Patagonia trip. I met with her hoping she would accept me into a clinical trial which would cut radiation down from six weeks to one week! I researched and research the brachytherapy hoping I was a candidate but unfortunately, I am not. Since my cancer had advanced into my lymph nodes she could not recommend the newer, less definite form of radiation. So I told her I am planning on being out of the country from December 23rd to January 10th and she pulled out a calendar and started calculating. This was on October 12th, after my mom and sister had booked their flight for my surgery, after I had booked my flight to Utah for my mom's surprise party and for a moment the doctor suggested we move surgery up to the following week (last week) and rush into radiation immediately after a short recovery. My face must have conveyed my concern over this rushed and amended schedule because before I could respond she nixed that plan and said there wasn't any reason we couldn't wait until I return and suggested we have everything else done - a PET scan and a simulation of the radiation so they know exactly where they will radiate - before I leave. I agreed to that plan and will have all of November and December to devote to recovery and building my strength and endurance for the trip. Time I realize I really need to give my body and my mind to recover from week after week of chemicals being pumped into my body. The fight is not yet over and I fear the finish line is being pushed a couple of months into 2012 but my hope is that the worst is behind me.

Thursday, September 15, 2011

Red Rock Relay and Chemo #7

Recovering from my last chemo treatment felt long and drawn out. Harder than my prior treatments not just physically, but mentally. I went nearly ten days without eating solid meals due to flush and mouth sores which destroyed my appetite and ruined all taste buds. My concentration and patience were shot and I just wanted to curl up and sleep through the middle of October when all of this chemo stuff would be over.
Lucky for me my visitor that week was my dear friend Shannon - a psychiatrist and excellent care taker. She was perfectly content to sit and read in my apartment and listen to my whining and tolerate my moods. She was also at the ready when I needed to talk me through my dilemmas about medicines to take and frequently pushed Ensure and Boost shakes at me when I didn't realize hours had passed without any desire for food. Oh, and she tolerated me forgetting that maybe she wanted to eat despite my lack of appetite.
But the best thing Shannon did for me was near the end of her stay when I started seriously questioning my decision to not go to Southern Utah for the Red Rock Relay race I as supposedly captaining. I did my first relay race last summer a couple of days before my 35th birthday and surprised myself with how much I enjoyed spending over 24 hours in a van driving and running through the Wasatch Back mountains between Logan and Park City, Utah. I bonded with old friends, made new ones, learned that I could run three separate challenging runs in roughly 24 hours and discovered a 2 hour nap on a blow up mattress in a teammate's family cabin plus a steamy shower and the most delicious egg sandwich ever was fuel enough to get me through a gorgeous run in Heber Valley with hot air balloons rising on my left and the snow capped back side of Mt Timpanogous to my right. I knew I couldn't run but I felt this emotional draw to just being at the relay I had been planning for close to a year with my oldest friend - the one I met in junior high gym class, the one who gleefully ran her laps around the junior high "track" while I cursed every step and wondered what was stabbing me from the inside of my side while she trotted along with me after she was finished to encourage me.
With only a week to go before I needed to be in southern Utah for the race I looked up flights to St. George - which also happens to be home to my grandparents and some other relatives. I was suddenly craving the opportunity to see them along with the race and my sister and the friends who I had helped talk into running this crazy relay. I knew I couldn't possibly run. The race started at Brian Head ski resort at an altitude over 11,000 feet and ran past Cedar Breaks and over to Duck Creek Village on top of Cedar Mountain - a mountain that is near and dear to my heart from childhood camping trips and my early years of independence as a freshman and sophomore at Southern Utah University when I would escape up that mountain at every possible opportunity. The race runs down Cedar Mountain to my college town of Cedar City and then continues west into the desert to the tiny hamlet of New Castle before turning south to Veyo and on toward St. George before turning east through such towns as Washington, Hurricane, La Verkin and finally to the finish line in Springdale - just shy of the entrance to Zion National Park. I have memories as far back as my chronology reaches of these places and roads and scenes. I ached to see the mountains, the red rock, my little university where I showed up as an 18-year old in search of mountain air and independence, and maybe a little education. In my head I ran through the hikes I had memorized from Cedar Mountain with the thin air pounding in my chest and glimpses of red rock through the pines, Navajo Lake, the view of Zion from the top of the mountain and it was hard for me to imagine anything more bolstering. My soul reached out and craved it.
A flight to St. George from JFK via Salt Lake City turned out to be only $400 with only a week to go. It was a sign. I wasn't going to be financially punished for my procrastination. Plus, I could see my grandparents. I couldn't remember the last time I had seen them and I longed to sit with them and look out the front window toward the Red Hill I scrambled all over as a child. Simple, familiar sites called to my soul.
Before hitting purchase I called my sister. No answer. I called my mom. No answer. I called my co-captain, Amanda, who for the last few months had taken over all captaining of our team as I pulled the covers over my head, depressed that cancer was taking yet another planned event from me. Amanda answered the phone and as I blurted out that I wanted to come my enthusiasm was matched and she told me she knew before she picked up the phone that I was coming. She just knew it despite the fact that a few weeks earlier I had confessed that I didn't see how it was possible. When I called her I still wasn't eating solid meals. My last run was a week prior but it was a slow, plodding trot at sea level. I knew I couldn't run hills at altitude. I was lethargic and in danger of spiraling into the worst wallowing period since I heard the words "It's cancer." I didn't want to go to that place and talking to Amanda pulled me out.
I booked my flight and began studying every page of the Red Rock Relay Zion website. The next morning, September 1st I was inspired to try and run. I made it one mile in 13:59. Slower than slow but I did it. A few days later I ran a mile and a half in 20 minutes and missed my two mile goal when I just couldn't manage to put one foot in front of the other again without fear of collapsing or puking. So I bought an ice cream bar to cool my mouth and sat on a park bench to watch the river and the people. People who were healthy. And I thought to myself, it can never be as difficult as it is right now to run. If I can get through this next month I will be so much stronger for it. I will never again be this slow. It can't possibly be as difficult to run a mile as it is right now when I have to stop every half mile and walk and then every quarter mile only to collapse before my simple two mile goal.
I was closing in on two weeks post-chemo and I managed to return to the office for brief appearances and by Wednesday I began eating solid food. I also met with my surgeon. That visit bolstered me. He examined me and confirmed that the lump was no longer palpable - chemo was doing what we had hoped, shrinking the tumor. He reminded me of my favorite statistic (the one I have tried not to pin all my hopes to for the last few months) - that 25% of lumps disappear when chemo is administered prior to surgery. He then said he is "due" for one. These were magic words to me. Words we urge my mother to iterate during tight sporting events because my family has a superstitious belief of their power when she says an opposing team member is "due" to miss a free throw or field goal. I wrote the words in my notebook with a smiley face next to them and tucked them away in my hopeful heart.
He described the outpatient surgery in detail, including the part about removing the sentinel node from my armpit and answered all my questions about the dreaded lymphodema reassuring me how closely he would monitor that and how rare it is in his patients. I asked when I could start exercising after surgery and he said as soon as possible I should return to all my normal activities. I liked that answer. I asked about incisions and he calmly walked me through a book of photos and showed me what his incisions look like and how they differ from some in the book and why (so as to not pull the nipple off center). We made an appointment for October 5th after my last chemo treatment to set a date for surgery and all of the other scans and whatnot that will have to be done.
That night I packed for Utah and exchanged a flurry of texts with Amanda and my sister. My enthusiasm kept me up too late and my 415 am alarm went off far too early Thursday morning. I was upgraded to first class and ready for my 7 am departure. Unfortunately we managed to taxi out to the runway where we stopped. This isn't so unusual but as I finished the end of the first book I had with me I noticed that other planes were passing us in line and the captain hadn't made any announcements. Plus the flight attendants hadn't sat down yet. Not good. When we finally turned back onto the runway the flight attendants sat down without prompting from the captain and I thought it was time to take off. Unfortunately the captain finally decided to deliver the bad news - we had some sort of check engine type light illuminated and we were heading back to the gate. Ugh.
Nothing to do but sit and wait and open book number two and chit chat a little with my seat mate. Oh, and call Delta to rebook my connecting flight I was sure I would miss. Bless the iphone and the Delta app for having easy access to flight schedules so I could be reassured before I even had an agent on the phone that there was a later flight available. We were delayed about two hours, just enough time to land when my connection to St. George was taking off. But I was confirmed for a 3 pm flight which gave me plenty of time to have lunch with my dad at Su Casa during my layover. Thank goodness for the timely return of my taste buds.
I kept in touch with my teammates as they piled into cars and vans for the drive to Cedar City as I waited for my flight and looked around to see if anyone else appeared to be heading for the race. When I finally boarded the tiny little prop plane I had already noticed the woman who was talking - far too loudly for my taste - to everyone she encountered, including the gate agent while I impatiently waited for a seat assignment. I should have listened to her a bit more carefully because as luck would have it, she was my seat mate for the flight. She was already talking when she entered the plane and didn't stop until I hurried down the ramp to leave. When she stopped pestering the poor boy returning from his mission in the row behind us she turned as asked me "who are you?" I was trying to bury myself in my book and was caught off guard by the question and told her she doesn't know me, I'm not from the area.
But I didn't guard my southern Utah roots closely enough because she continued to ask questions and I eventually confessed to staying with my grandparents. And of course this woman knew them. And went to high school with my aunt. And had opinions on them and others in my extended family to share. She talked without stopping and without transitions as she flitted through whatever thought passed through her head on the 45 minute flight that felt significantly longer. She overshared about every piece of family information that entered her head, never pausing to consider that maybe I wasn't interested. Eventually I gave up on my book and gave in to her ceaseless monologue despite enduring questions such as "why are you bald? Is it cancer?" that seemed to drop out of nowhere and to which she really didn't want an answer. Welcome to the small town world from which I am only a generation removed.
My aunt and her new husband (both of whom knew my seat mate from high school) were waiting in the airport for me and they paused to greet this woman briefly and we laughed about the whole thing all the way to my grandparents house where I was able to visit for an hour or two before getting a tour of my aunt and uncle's condo which they had kindly offered as a home base for my relay team while they were away for the weekend. Then Amanda and her mom picked me up and we drove to Cedar City to meet up with our teammates who were gathering at the Spring Hill Suites. My sister was there with the team t-shirts and a surprise "Pink Power" tank top she made for me to run in. Amanda's husband, Matt, my high school friend Michele and a couple of returning teammates from last year's relay team were also there as well as new relay friends. We had two suites we all piled into for the night after decorating our team vans - an Excursion affectionately known as the Canyonero borrowed from Michele's generous and trusting parents - and the very awesome Sprinter van contributed by a new team member who also gave me a Honey Badger t-shirt (for my team code name) despite the fact he had never met me. I was exhausted but adrenaline kept kicking in and pushing me forward as team Technical Running Ponchos bonded in the parking lot and prepared for our first sleep over.
The next morning I woke up far too early. I could blame east coast time or hearing cars pulling out of the parking lot since I was sleeping next to the window or the air conditioner that was too cool when on and not cool enough when off. But really, I was just so happy to be there that I was ready for it to all get started. So I got up way too early and showered which prompted others to rise earlier than planned as well. Our room was full of "van 2" runners and while our first van of runners had to be at Brian Head before 8 am, according to my rough timeline estimate we didn't need to be at the first exchange at Duck Creek Village until 130 pm. But we were up and eating breakfast and packing up long before then. Afterall, we needed to get gas, a few extra grocery supplies and, of course, stop at D.I., the local thrift store, so a few of us could fashion some ponchos from ugly blankets and, in my case, an odd shower curtain. I also discovered a little ceramic mule/burro which fit our van theme rather well who got strapped to the tray on the back of the Canyonero next to the coolers where he stayed until the last leg of the relay when it was his turn to run and cross the finish line.
I drove up Cedar Mountain and was overwhelmed by memories and the beauty of the mountain in the morning. I pointed out whose running route we were possibly driving through and warned my teammates when we were close to an especially impressive vista so they wouldn't miss the sites - like the view of Zion where we would be finishing our race the next day.
It was sunny and cool and just a little breezy when we reached the exchange. The parking lot was packed with festively decorated vans and people in a variety of running clothes and costumes. We donned ponchos to keep the breeze at bay and snacked in the parking lot and our in-van barista made coffee for the caffeine addicts. When the breeze took a sharp turn I joined Michele under her extra large, authentic poncho from Tijuana and we all watched the dark storm clouds approaching from the west.
Before we knew it, they were on top of us and the lightening and thunder that had been off in the distance was cracking within seconds of where we were standing. By the time our first van reached the exchange to wait for their last runner it was pouring rain, thunder was bouncing around the mountains in rolling succession and lightening felt nearly instantaneous. They opened the back doors of their van and most of our team stood in or just outside the doors while people took turns staring down the road looking for our sixth runner. I had layered capri leggings over my running shorts, pulled on my hoodie and a rain jacket and still was chilled. Soon it was hailing, just to make the whole thing a bit more epic. The parking lot had thinned out significantly and when we finally saw our runner, we yelled and cheered and the team met her with hugs and sent van 2's runner off into the elements. Her husband wrapped a fleece around her and despite the goose bumps and having just run her longest distance ever in her short running career in thunder, lightening, rain and hale, she was smiling. Inspirational, right from the start.
My half of the team said goodbye to van 1 until Cedar City and piled into the Canyonero for our legs. After two more exchanges it was my turn. I was running with Michele for a 2.9 mile leg called "Top of the World". I didn't know how much of it I could run and warned Michele I would be super slow. We were running back up to the summit of Cedar Mountain starting at an elevation of approximately 9,700 and finishing at 10,000 feet. The terrain was primarily open fields just past Navajo Lake with sheep grazing peacefully, except when Michele happily ran through a cluster of them to make me smile at one point as I walked to catch my breath. I started out running for a solid half mile. I needed to warm up in the chilly mountain air despite the fact the rain and thunder was gone, the sun wasn't out and it was possibly as low as the low 40s or high 50s and I longed for the long sleeved shirt I opted not to bring with the sleeves that reached over my hands with thumb holes. After that first half mile I was never able to run for long. I walked until I could breathe normally again and trotted along slowly with Michele dropping behind me when a car approached as we were running on a narrow shoulder in reflective vests. Before we reached a mile and a half I was entertaining thoughts of quitting. My lungs were burning and the distance felt insurmountable. Our support van was stopping every half to one mile to cheer us on and crossed the street to offer water and words of support and an excuse to stop for a moment. But I didn't get back in the van. I gave myself permission to walk as much as I needed - and that was most of the way. Other vans cheered for me. Perhaps for my bald head, perhaps they could read the "Suck It Chemo" mantra I had my sister write on my back that was half-hidden by my reflective vest. Perhaps they were just nice to weak runners. We were passed by many runners but one will always stick out in my head. A woman ran past and then paused. She explained that she is a ten year cancer survivor and was a beacon of hope. She had had a brain tumor and yet there she was - running. Running with strength. I thanked her and wished her well on her run. Her team van was the most supportive in yelling out support each time we saw them.
With just a few hundred yards left to go I told Michele I was running it in. I took the slap bracelet baton from my wrist and pushed and pushed. I heard Michele comment over my shoulder that I really was picking up the pace as my heart pounded harder and harder out of my chest and I took short, gasping breaths. When I finally made it to the exchange I wanted to collapse and there was my team mate waiting to receive the baton but instead of sticking out his arm to take the bracelet and run, his arms were wide open ready to receive a hug. I collapsed into his embrace and fought back tears of victory. I took 45 minutes to go just under 3 miles with an average pace of 15:37/mile. A far cry from my 3.6 mile corporate challenge race back in June which I completed in 40 minutes just two weeks after my first round of chemo but the important part is that I finished. I didn't quit. And my team encouraged me and supported me and was just proud of me for showing up.
I took a leg to recover and then resumed my driving responsibilities to witness my sister's fastest run ever down a steep and fast 6.6 mile stretch called Speeder to Cedar. She barely waved to us when we stopped to offer support. After just one more runner we were at the next major exchange around 7 pm to pass the baton to our first van and take a break.
While we were there I ran into one of the race directors, Matt Ward - one who shortly after I registered as captain early this year sent me an excited email asking if I was really coming all the way from New York City to run the race. Despite confessing to my Utah ties, he still sent me a free hoodie for my travels (a hoodie I wore most of the flight there). In April I stopped in Utah for a weekend after a work trip to San Diego and went to the Salt Lake Marathon expo with my sister while she picked up her race bib and met Matt Ward in person. We introduced ourselves and expressed our enthusiasm for the still far off relay. That was April 15th and despite a grueling work and travel schedule I was training for a half-marathon and my sister convinced me to sign up for the 5K that was the next day along with her marathon. I ran that 5K at an unaccustomed altitude with some not so insignificant hills in 32 minutes. The following Tuesday my doctor discovered a lump in my left breast and within 12 days I was told it was cancer. The 10K I was registered for in May was missed due to fertility preservation efforts, the half-marathon I was to run in Seattle was canceled and every run grew slower and harder as the summer progressed and more and more chemicals were pumped into my body on a bi-weekly and then tri-weekly basis.
In Cedar City, I had dinner with my van-mates and then wished them luck over night as I returned to St. George to pick up groceries for breakfast and supplies for Saturday and then some rest. I talked to my mom on the 45-minute drive to keep myself awake and after wandering through the grocery store with "Suck It Chemo!" still emblazoned across my back. I was at the condo by 1030 pm and ready to pass out. I showered and set up an aerobed with more difficulty than it required in the front room and drafted a note to Van 1 about 3 times explaining where the beds and bathrooms were. I set an alarm for 3:45 am hoping to get up in time to make them some breakfast before their 5 am start time.
But I never saw them. Never even heard them. I missed them by about 15 minutes. I don't think they made a sound as they came, showered, slept and made breakfast. The only reason I knew they had been there was a note apologizing for the dirty pan on the stove. I dozed for another hour or so until I heard the sucking of air that came from the front door opening announcing the arrival of my van - apparently I was much more tuned into their movements. I poked my head out over the loft railing and whispered - despite me being the only one sleeping in the place - that I was awake. They stared at me dazed with fatigue. I went downstairs and explained where the bedrooms were. They stared. So I pointed at people and directed them to bedrooms and told them where they could find showers and towels. They collapsed.
A couple of text updates from Amanda in Van 1 made me nervous about being late for the exchange in Washington but after consulting the routes I knew there wasn't too much rush. Her husband wasn't quite so reassured and, as he explained it later, he was in a bit of a "dither" cooking eggs, making coffee and packing supplies back out to the van as I roused various teammates from their 1.5-2 hour naps asking what they wanted to eat. We managed to get everyone awake and fed and into the van with near perfect timing since we drove the short 15 minute drive to the exchange only to arrive at the parking lot at the same time as our first van. We caught up on overnight happenings and warned them how we had left the condo in much poorer shape than they had and congratulated the on finishing all three of their legs and they wished us luck on our last leg of the course - a grueling 37.2 miles across the heated red sand desert in the sun. No one dreaded their last leg more than my sister. We had a long morning and afternoon ahead of us.

But we stopped for ice and slurpees (at least I made my sister drink one) and once again enjoyed the camaraderie of our van-mates and made sure to stop frequently for our runners to squirt them down with a spray bottle and dump water over their heads and encourage the drinking of water and electrolytes. I was proud of every single one of them but mostly my sister for facing her greatest fear - running in heat. She ran 7.5 hard miles in the heat and ran them better than she anticipated - with a cold. Her perseverance inspired me as I geared up for the last of my running - the last mile of the last leg to Zion.

But before I get to that I have to share one of my favorite anecdotes from the race. Humorous anecdote, I should add. I was driving the Canyonero during Erin's last leg and pulled off to the side to wait for her. I was sitting in the driver's seat glancing in the rear view mirror as other teammates stood in the sun watching for her approach from behind the vehicle as well. A man from another van pulled off in front of us paused at my window and asked if he looked sunburned. I told him he wasn't quite red but probably could use some sunscreen in the brutal sun and at this altitude (which had dropped from the 10k from the day before down into the 3-4,000 foot range, but still, this is the desert - when in doubt, add more sunscreen). I offered him some of mine that was readily at hand. He declined and then added, with a sarcastic smirk "I'll just get skin cancer some day." I quickly removed my hat and retorted "I've got cancer, trust me, you don't want it." I was trying to be funny, mostly. But his face fell. I know he felt foolish and he said he would take some sunscreen to make me feel better. I squeezed a generous amount into his palm and wished him well. Then, after he disappeared I told my teammates and we all had a good laugh. I mean, what are the odds? We say those types of things all of the time but when do you ever imagine you will say it to someone with cancer? I saw the man again after the race and he approached me and said something very gracious which I forget because I was so dazed and overwhelmed by emotion at that point. But I appreciate the interaction all the same.
When our last runner set out, there was the tiniest bit of cloud cover and a handful of rain drops fell. Michele took over the driving and I readied myself to run. I told Matt I would meet him for the last mile of his 6.7 miles to the finish. We parked in a familiar parking lot in Springdale near a restaurant I love for its bumbleberry pie. I didn't think about it then but now I wish I had picked one up, it is so rare I have the opportunity to eat it. I had time to nervously go through my pre-running routine with a little tai chai and active stretches. I sprayed down a few passing runners and watched for Matt's approach. Nervous. And bubbling up with emotion. I was already a little teary in anticipation of finishing the race.
When Matt reached me he slapped the bracelet around my wrist and we took off. He slowed down but I was full of adrenaline and started to fast - close to a 9 minute mile, way beyond my abilities. I warned Matt I needed to slow down and he complied. I also warned him this would be emotional for me and I would probably cry. He said "yeah, me too." And we continued in silence until he asked "did you ever picture us here when we were in high school?" again, my emotions were caught in my throat and all I could say was "no" and we continued in silence again. I made it to a half mile before walking and cursed the fact that the last mile had to be uphill. I alternated walking and running for that last half mile and paused once to pluck a sunflower from the side of the road to place behind my ear and Mumford & Son's lyrics to "After the Storm" bounced around in my head "And there will come a time, you'll see, with no more tears. / And love will not break your heart, but dismiss your tears / Get over your hill and see what you find there, / With grace in your heart and flowers in your hair." I knew I just needed to get over the hill, I felt grace in my heart and now I had a flower, despite my lack of hair. We made a left turn off the highway towards the finish line and ran into our teammates piling out of the van. I was walking to catch my breath and the sight of them flooded my heart and we all started running together despite the fact I kept saying I couldn't run anymore. We made a right turn and on the other side of a short downhill and uphill dip I saw the rest of my team - showered and rested and beaming at me. The tears poured down my face and I believe I once again said I couldn't do it but someone took my arm briefly and at the top of that last hill I was told to just make it across the grass. I pushed through the first gate where an announcer gave our name over the P.A. system and we ran across the grass to the finish line where I collapsed with my team members surrounding me, hugging me, kissing my head as I cried tears of joy and tried to slow down my heart. That mile took 13 minutes but it felt so much more epic than that. I felt I had overcome so much more than a short little mile. I completed a modified version of a goal I thought was unattainable for me this year, after 6 rounds of chemotherapy. The ending was such a blur of emotions. I stuck my head under a sprinkler set up for cooling runners before posing for team photos and various combinations of teammate photos. Time stood still and raced ahead all at once.

I needed to swap t-shirt sizes at the gear booth and waited for Michele and Erin to retrieve my size small from the car while my team members browsed through the gear for sale and sucked on snow cones. I secured a size medium as I waited, promising to give the volunteer my small as soon as my friends returned from our van as a girl smaller than me glared at me for getting the last medium. The emotions swelled back up and I started to feel abandoned. I sent another teammate off in search of my sister and stepped away to get a snow cone, promising the volunteer I would be right back. Eventually another team mate took my space while I looked around a bit and she convinced the volunteer to just let me have the shirt without waiting. Of course, eventually, Erin and Michele arrived and added our too small, small shirt to the pile. Our team congregated once again as we readied to head back to the condo for food and rest when I spotted Matt Ward, the race coordinator I met at the SL Marathon Expo.
I walked over to thank him for the experience, for the beautiful scenery, for the chance to participate against all odds, to explain what had changed for me since I met him and to commit myself to returning to run for real next year. He greeted me with a hug and said he had seen my bald picture on facebook and had his suspicions. He introduced me to his dad and then told me I could run for free next year. I thanked him profusely and once again my emotions swelled as I returned to my team to inform them of his generosity. As tears streamed down my face once again, he was back at my side, asking if I would mind joining him as he made an announcement. I have learned over the last few months that the more I put my cancer out there, the more I share it with others, the more I gain in return so I had no choice but to say yes. This journey of mine was not meant to be mine alone.
We ran across the grass to the P.A. announcer and after asking the DJ to turn off the music, Matt Ward took the microphone and began telling his version of the story of meeting me, interrupted from time to time to announce the finish of other teams, including the team with the cancer survivor who encouraged me at the top of Cedar Mountain the day before. I do not remember reminding him of my name but he introduced me as "Alyssa Englund, my friend." It touched me deeply that he knew my full name. It touched me even more when he choked on his words as he describing meeting me months ago, before cancer was discovered, while I still had hair. And I nearly collapsed when he told me I was welcome to run his races for life. Amanda got it all on video and I honestly do not trust my memory of all of it until I am able to watch it because I was so overcome with the beauty of the moment.
I still am.
I often feel guilty for sucking everyone I encounter into the black hole of cancer that has dominated my life since April. I find myself repeating symptoms and prognosis and treatment schedule and anticipated surgery and radiation schedules ad nauseum. I don't want to be one note. I don't want to pull everyone into this dark place.
But the surprising thing is that it isn't always a dark place. By opening up to others, by sharing this journey, my load is lightened and grace enters my heart and I am buoyed up to a point where I am now a stronger, better person for it. When I left for the Red Rock Relay I hoped it would be a salve to my wounded soul and what it gave me was so much more than that. I returned to New York with the positive dedication to kicking cancer's ass that I shouted out at my diagnosis. The lull I felt through August is behind me.

I went to chemotherapy treatment number 7 yesterday with a smile on my face and no anxiety. I had - no, I have - no fear of the side effects to come for I know they are temporary and I know that I have each and every one of you cheering for me along with countless strangers, some of whom made comments to me as my team returned to our van. Some of whom include people like my drycleaner who Tuesday commented how often he thinks about me as I dropped off my bag of laundry despite the fact that I don't recall the last time I saw him. During music therapy yesterday I sang with abandon, especially the words to Mumford & Son's Timshel of "you are not alone in this / you are not alone in this" and Tom Petty's words "Because I'm free!! / Free falling!!" I do not have a good voice, I never have and that was confirmed years and years ago as a freshman at SUU when my sight singing professor grew frustrated with the fact that I knew where the words should be but couldn't make my voice follow. But yesterday I felt I could sing. Nurses commented on my voice and I felt grace in my heart again. I actually felt a slight twinge of sorrow that I only have one more music therapy session left, despite the fact that the reason for that is I only have ONE MORE CHEMOTHERAPY TREATMENT LEFT!!!
My journey isn't yet over, my side effects from yesterday's treatment are still ahead of me but my doctor reduced my dosage by 25% so I am hopeful that means I will feel 25% better than before in the coming days. My greatest hope is that I will be able to make it to the Susan Komen 5k on Sunday in Central Park to greet - and possibly slowly walk - with the co-workers and friends who have registered on my team. I have not yet had an opportunity to thank all the individuals who have donated but know that I appreciate every cent and someday I hope to thank every single person who has stood by me through all of this. Your love and generosity and support is more meaningful than you can ever imagine. There is still time to donate and/or register for the race. I would love to see you there on Sunday morning as I anticipate it being one more bolstering moment in this journey to carry me through my last treatment.
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