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
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.