I took this photo yesterday. I was finally doing my spring clean up and I paused for a moment to look at the sky and there were these beautiful clouds puffing by with the brilliant blue sky as their backdrop. How lucky was I to spend the day in my yard pulling weeds, pruning and planting flowers? Three weeks ago I was holed up in my house with my friends Andi and Judy bringing smoothies and soup. I traveled from my bed to the couch and back again for almost ten days because I was so sick and tired and consumed by a rash.
As I stood there yesterday watching the sky and its infiniteness, I realized how you just never know what is going to happen. For some reason the vastness of the sky made me think of that. My body is a remarkable thing. The way it is has gathered its strength back and I am able to do physical work for hours after being so sick just a few weeks ago is a marvel to me. I suppose our bodies have infinite reserves that we can call upon if we so chose.
So I have decided to love my physical being more and take care of it better. I will be less critical of it when it doesn’t perform exactly as it should because it has served me well in this business of getting cured. It was only until end that it started to complain. And as I look toward surgery and radiation, I have every bit of faith that my body and I will move through this with strength and grace.
I am sitting in the infusion therapy area waiting for my blood to be drawn for the final time here. I have never been in the infusion area on a Tuesday. I see more women like me — wearing baseball caps or unabashedly waiting their turn with their shiny, beautiful heads on display for all to see.
Today is a big day for me medically. It’s just after 8 a.m. and I already have had an MRI. I see the dermatologist to have my rash checked, then an echocardiogram and ending with a visit with my surgeon. I feel like I am at sixes and sevens in a way. I have spent the last seven months waiting for this moment. Yet I am not quite sure what I should be doing with myself. I peer into my future and I see a huge, gorgeous blank slate. It is all mine to shape and build.
I still have work ahead of me though. Going through the chemotherapy was hard and I imagine of all the three medical processes I need to go through it will remain the most difficult.
In a strange way I am looking forward to the surgery. It’s the midpoint. I am also looking forward to disconnecting from my life during my convalescence and heading to Boston for a few weeks to be with my daughter and the rest of my family.
I have found that going through such intensive weekly therapy is transformative. While I went to work and kept house, I suspended the other aspects of my life. Incidents that once bothered me and took on great importance no longer do. I now well up at the television when someone is in distress or they have some wonderful magical event happen in their life. My social life is nonexistence because I couldn’t count on my body to allow me to be liberated from my house. I tightened my circle of friends because I didn’t have the energy. I have always thought of myself as strong and independent and the chemo temporarily altered that.
The business of cancer and the act of getting cured is a serious and an enormous undertaking. It takes every amount of focus and energy. During my chemotherapy I became envious of those people who went every two to three weeks. The effects of the drug accumulated in my system and with every week that passed, I was more tired and more exhausted mentally.
One of the things that struck me as funny was people’s take on illness. I maintain that all illness — or life’s reversal for that matter — are relative. People would catch themselves around me if they started complaining about a cold and say, “Oh but that is nothing. You have cancer.” And I would just look at them and say, “It is all relative.” A cold can be just debilitating as cancer — hopefully for a shorter duration.
We all have parallel circumstances, which I wrote about in an earlier blog entry. It’s all important no matter how insignificant or nonthreatening it may appear to someone not experiencing it. But confronting and working your way to being cured is a huge life event. It’s like battling Goliath. And when you win the victory is incredibly sweet.
One of the most interesting things that I have observed since I started my cancer treatment is how some people look at me and sometimes in a rather gawkish way. I do little to hide the fact that I have no hair to speak of. And there are other physical clues that say cancer patient.
So when some people look at me when I am out in public they don’t really see me. Instead, they see death.
I first noticed it a couple months ago. I was in Talbots with a friend and I saw a hat I liked. So I quickly yanked off my baseball cap and tried the other hat on. I caught the eye of a woman who was gave me a long, sad look.
“I am not dying,” I wanted to shout across the store. “This is how getting cured looks.”
When I went to make my purchases, the salesperson asked me if I wanted to open a charge account. And, when I told her no, I got the distinct feeling that she thought I declined because I wouldn’t be around long enough to make good use of it. The fact is, I have a strict rule about having too many charge cards.
I don’t take this personally at all. In fact, this has nothing to do with me. It has everything to do with our innate and cultural fear of facing our mortality. Death is such an unknown and the unknown is a very uncomfortable place for most of us to be. I simply am a mirror of some of the possibilities that confront any one of us in our lifetime.
I often wonder why God has given me the role of cancer’s billboard. Maybe because I never found the cancer diagnosis life threatening. I have viewed it as an inconvenience and something I just have to go through to get to the other side of my life.
I am not happy about being stared at and representing some people’s worst fear. But I get it.
People mean well for the most part. Facing a grave illness and the possibility of it taking you to the next place is surreal. I think about my daughter and how much I still want to see her continue to mature and be here to utterly spoil each of her children. I think about George Clooney and how utterly bereft he would be if I were to up and die now.
I met a very wise woman shortly after I started my chemotherapy. And as I talked to her about my experience, she looked at me and said “People’s reaction to your illness has absolutely nothing to do with you. It’s about them. It’s about the horror of death and being ill at ease with the whole idea. “
In some ways, I am glad I can be useful. We are all going to die someday. And, if staring at me helps people make peace with it, I guess this cancer has served its purpose.
I am done with chemotherapy. It ended sooner than expected and quite dramatically. I had a severe allergic reaction to the adriamycin/cytoxan. My body erupted into an angry rash. It felt like the chemo was just burning its way out of my body. But it is handled and I returned to work this week. Today, for the first time in a long time, I felt like myself. I had energy and focus.
It was odd to me to be so sick. The first 14 weeks of my chemotherapy was almost like a cakewalk. Once I started going for acupuncture the fatigue was mitigated. It wasn’t a perfect time, but everything was manageable. I headed to the office every day and worked a full day.
The fact that I am not having the last two treatments of A/C makes no difference biologically. My oncologists couldn’t palpitate my tumor last time I saw her. And when we discussed ending chemotherapy she said we zapped this tumor to within an inch of its life and two more doses of A/C wouldn’t matter that much. I was happy to hear her say that. I felt like if they put any more drugs into my body, I would have died. I couldn’t stand the sight of those syringes and I hated the whole injection process. I would try to lie on my side looking away from the nurse as the liquid was being pushed into my veins. I would return home and head to Andi’s because I was nervous to be alone. And, then when I woke the next morning I was always a bit surprised. This drug has so much hype around it and so much visual drama.
Next is surgery. I won’t know until next week what form it will take once I have my all my imagining done. But I do feel like the hardest part is behind me and the rest is just an inconvenience.
I have been struggling with what to write here since I had my first dose of Adriamycin and Cytoxan. When I started writing about my cancer, my goal was and remains to be helpful and write in universal truths so that people could find something relevant to their lives when they visit me here. But since the latest drug, I feel incredibly self centered. It has been a struggle for me to be expansive in my thinking. Instead, I feel contracted. I feel very interior because the drug has taken over my body in a very fierce way. While I feel sick all the time and the fatigue is incredible, for me the biggest challenge is keeping the eye on that prize.
So the good news after all that preamble is that my oncologist couldn’t palpitate my tumor yesterday. See what this does to you? I am so focused on feeling better the good news gets lost. A/C is the big guns, she told me. This is when the every tiny little cancer cell is ferretted out and banished from my body.
The whole procedure is daunting. I can’t watch. Seven syringes, the size you would most likely use to tranquilize an elephant, are slowly pushed through my IV into my vein. The vein has to be just right. I have to be doped up with tons of anti-nausea medicine both orally and infused into a vein. Yesterday, my favorite nurse, Sam, did my injection and as we sat there together watching Brian Williams I felt like we had a sacred bond. He knows how much I dislike this part of the therapy.
I am fine overall and I remain grateful for all the help I have to get through this. And, as I sit here tonight I am getting ready to be in my chemo haze for the next 72 hours. I am set. And those things I don’t have my friend Judy has the list and will bring to me tomorrow. Andi will come over tomorrow and supervise me while I inject myself with Neulasta. My two angels. I don’t know what I would do without them.
Here’s the other piece of good news — only two left to go. Amen. Seriously.
I heard nothing from my nurse or oncologist this week about the status of my treatment. And, I decided to let the sleeping dog lie. So, I hopped in my car, drove to U of C, checked in on the sixth floor and away I went. MM 121 and Taxol is done. Now onto AC, which will be a 15 minute injection followed the next day with another injection to boost my white blood cell count. Far shorter time commitment, but more toxic then the two I just finished. Thankfully, I am now down to an every other week therapy. May 30 is in sight.
I have been a good soldier in my battle to cure this cancer. And, I have felt mostly optimistic and positive through this first leg of the journey. Genuinely so. But I think I would be misleading if I didn’t share moments of frustration. After all, my goal here is to quell the fear of cancer and its treatment. But there are times, when things don’t go so smoothly and I do get upset and even scared. And today was one of those days.
I have marched through this chemotherapy at good clip. But this afternoon, as my nurse looked at the rash on my hands (It is bad and does bleed sometimes) she actually said that next week’s treatment might not take place. I looked at her in disbelief. I have come so far. I have five infusions left. Next week is my final one with the trial drug, MM 121, and Taxol before I move on to four rounds of Adriamycin Cytoxin — the “Red Devil.”
I have everything timed. I desperately want to keep to my schedule because I so desperately want to be done with the treatment and the cancer.
I have dreaded chemotherapy and while it has not been so bad, you do get tired of it. My nurses are wonderful, the doctors are fantastic and caring and I have friends and colleagues who would do anything for me.
But, I am tired.
After I complete chemotherapy, I still have two legs of the treatment plan left. My surgery is in June and a few weeks later I begin a five-day a week dose of radiation for several weeks.
For me, the hardest part of the cure is the feeling of being tethered to the chemo pump. I am only attached to it for a few hours each week. but the psychic attachment never goes away during the days in between. No matter how mild the side effects, there is no relief from the drugs. I always know it’s in me killing cells and I am watching cells die on my hands, face and legs as the toxins find ways to escape the confines of my body. My mouth now has developed pockets of sores and I am growing more ornery each day.
I am sitting here wondering if that last blog I wrote about the light at the bottom of the stairs jinxed me. Is everything going just a bit too well?
My nurse told me to pick up a specific cream at the drug store. The prescription cream I received last week did nothing while the rash grew worse. I have been applying this new ointment to my hands and legs and the rash seems less angry. I know the toxicity level in my body is pretty high after 15 straight weeks of infusions. With the rigor of my protocol there is little time for my body to expel the medicine and then prepare for the next round.
So, this my plan for the next week. I am going to use that ointment on my body and pray that the rash abates. And, I am going to envision myself going to U of C Thursday morning as I always do and settling into my recliner and day dream about a Transatlantic journey with George Clooney, of course.
When my treatment plan was just a concept, this vision popped into my mind’s eye. I thought of myself descending basement stairs into the darkness, but at the end there is a sliver of light and I imagine this light to be the passage into a glorious garden and life. I now have only six infusions remaining and I see the sliver of light growing wider and I can almost smell the freshness of the air on the other side. The dankness is lifting.
Five weeks ago, I sat in my office on a Monday afternoon feeling dead tired, cold to the bone and my body ached. I thought to myself I don’t know how I am going to make it to May 30, my last infusion. There have been a few days when I’ve wondered if all of this is worth it. And, when I come to my senses again, the answer is clear — of course it is worth it. I have so much to do and besides George Clooney is expecting me to make it through.
Curing cancer is a rigorous business. The effect it has on your body is extraordinary. My hair is mostly gone. I have a rash on my hands and legs that is sometimes itchy and other times sore. I am constantly tired. My nose runs mostly nonstop. I have annoying bone pain for a couple days along with other things. I can’t really plan to go anywhere for certain. Yet, I am a very lucky person. I see other people going through chemotherapy arriving in wheel chairs or wearing surgical masks to protect their compromised immune system. I basically look fine and no one would be none the wiser about my health if it weren’t for my wispy-haired head, which I really don’t disguise.
What I have learned is to take care of myself. I started exercising again. I get on the treadmill or take a yoga class. Every week I go for acupuncture. It has done a remarkable job of lifting my energy level. Before acupuncture, I would go to bed every Saturday afternoon with a peanut butter sandwich on my nightstand and sleep well into the next day. During that long sleep, I would wake for a few minutes, eat my sandwich and go back to sleep. I don’t do that anymore since I started acupuncture.
I have also started to enjoy and appreciate more the time I spend with people. My family and friends are incredibly supportive. I can go to their homes and sit there with my naked head and no one minds. I walk around our office with my naked head and everyone is fine. I have become more comfortable with my body despite the fact that it is balking at me. I appreciate its biology and am in awe of how responsive it is to the medicine.
I have come to know even more that my mind is an excellent tool. Attitude is everything. I make a conscious effort to look for things to appreciate. I am grateful I don’t have neuropathy and my fingers can still fly along this keyboard and that I can button my shirt. I am grateful that I can go for a brisk walk and feel invigorated after.
I am happy that I can forget about this sometimes. I spoke to my friend Judy tonight and she asked me what time we were leaving on Thursday. I asked her what was Thursday and she reminded she was coming to my infusion. It slipped my mind. So cancer isn’t always present.
I am also grateful for my gifted physicians and their enthusiasm over my response to chemotherapy. It’s all good news. I am getting cured. I am feeling positive and that light at the bottom of the stairs is getting brighter and I can just feel it enveloping me.
Talking about cancer and treatment makes it less scary
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