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.

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 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.

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

So, I thought I would share some things that work for me.

Rule Number One. Thursdays have become my day. I head to the University of Chicago early in the morning and drop my car with the valet. Make parking a snap. Don’t go in the garage, hunt for a space and then have to walk forever to get into the hospital. I did that once at the insistence of my former husband who was with me for my first visit to the surgeon. I swear we parked on the top level in the farthest corner from the hospital you could possible get. Unlike me, Bill doesn’t have great parking karma. He learned his lesson when he came with me to one of my first infusions. We dropped the car with the valet, and we happily spent the day together.

Rule Number Two. Call your treatment an infusion and avoid any talk of toxic chemicals. It’s just downright negative. Yes, I am aware that I am being systematically poisoned, but it’s a great thing. My tumors have shrunk. This is medicine. It is making me better and hopefully ensuring that I will be around for a few more decades. I am grateful for the infusions. When I look around at my fellow infusees, no one is unhappy. We are all healthy looking and cheery. Some of us don’t have hair, but it will grow back. Some of us are being kept alive thanks to the infusions. Others of us are just passing through and hopefully will not have to return.

Rule Number Three. Listen to your oncologist. I strayed once from her advice, and it got me into trouble. I decided to take a supplement to mitigate some of the symptoms and it actually made me sicker. When I finally ‘fessed up, I was ordered to cease and desist immediately. Your doctor does know best.

Rule Number Four. Treat yourself. I go to an acupuncturist the evening before my infusion and it has worked. My energy level is better. I no longer sleep away the weekend. I am awake and do my household stuff. I am not running around. But it’s totally manageable. Also, get your nails done. I have no hair so I spend money on my fingers and toes.

Rule Number Five. Prepare for boredom. I admit it. I am bored. I really don’t leave my house on the weekends because of some of the side effects. And, I am bored to tears. I read. I watch movies. But I feel like I have no experiences. My life consists of work and home. That’s it. I hosted a tiny tea party on St. Patrick’s Day because I made Irish soda bread and that was fun. Another neighbor dropped by Sunday night with goodies.

Rule Number Six. Meditate. I have been a faithful meditator for a few years now. It just helps keep you on track mentally. It helps me stay centered and focuses me on all the good that is my life.  And, I do feel a connection to something greater than me. I particularly feel it when I am being infused.

Rule Number Seven. Be grateful. Thank God every day for the wonderful things in your life. I am so grateful for many things. My family and friends. My health. Yes, my health. I am grateful to my workplace and my colleagues. They are the most supportive and loving group of people. I am grateful for my doctors and nurses. Most of all, I am grateful for my former husband. Bill has been by my side through this entire experience. He has held my hand when I have been really sick. He has distracted me and kept my mind on the beauty around me with trips to the botanic garden and walks along the lake front.  He tells me when I am crazy and he tells me when I am fine. How lucky am I to have someone like him in my life? He is my oldest and dearest friend.

These seemingly little things can make a big difference in how you go through your treatment for any illness. You just need to take the path of least resistance and soldier on while taking great care of yourself.

First day of chemotherapy

Today I hit the half way mark with my chemotherapy. And all indications are that I  am responding very well to the treatment. Between my oncologist visit last week and my meeting with my surgeon this afternoon they both agree my tumor has shrunk and my lymph node is smaller too.

 It’s funny how ten weeks can make such a difference. I took my photo before I left for my first chemotherapy treatment and then I took one this afternoon when I returned home from my day at University of Chicago. I look different. I feel different too.

Half way through

Over the course of the treatments, I have had moments when I wondered how I was going to make it to the end of May. It’s more a mental game then anything else. I can plow through the fatigue. I can take four Advil.  I can mitigate the physical effects. But when it all hits at once, it’s pretty daunting. And then I think of all the great things I have planned. – my wedding to George Clooney,  my house on Martha’s Vineyard and planting the biggest most beautiful perennial garden ever. I think of summertime dinners on Andi and Marion’s deck. I think of my sweet daughter liking me again someday. I think of being able to drink a Dewar’s and soda. I dream of having hair on my head again.  All these things make me happy so I power on.

For me, cancer has not wiped out every bit of joy in my life. In fact, I have found more joy in the tiniest things.

The thing about having cancer is that it really does affect every part of your life. I know this doesn’t come as any great revelation, but when you live it, it’s a slow dawning. “Wow,” you think. “I really do need to go to bed at 7 p.m. so I can be functional at work the next day. Or, I really can’t eat fried foods without some sort of gastric meltdown. Or that trip to Boston, while worth it, wrecked me for a week. Or that fruit salad must have come directly from heaven because it has never tasted so good.

This is nothing to be sad about. In fact, it forces you into another state of mind where you have time to really think about things.  You have the luxury to take a thorough inventory of everything — from what is stored in your heart to what is stuffed in your kitchen junk drawer.

Because your body orders you to slow so it can heal itself, you also have more time to daydream. This is a good thing in a lot of instances. And it’s lots of fun. I have little skits that play in my head. — Me marrying George Clooney. Me going on a date with Johnny Depp. Me hopping in my little Cessna (which I pilot) and heading to my sweet little island home on the Vineyard. Me having lunch with my one of my favorite authors Anne Lamott because I think we would have lots to talk about.

It’s also a time to stock of what I am going to do when I am cured and back on my feet. I want to go to Ireland and drive around my ancestral home with my family. I want to trade in my station wagon and buy an Audi A6. I want to start my post cancer life unafraid to take risk and be whom I am truly meant to be and contribute in a way that makes FULL use of my God-given gifts.

These are the little presents that my cancer has given me so far and I feel incredibly blessed to have received them.

While cancer is a biological phenomenon, it is also a state of mind. It infuses every part of your life if you are integrated in your approach to managing it.

It’s funny how there is a knowledge that is tacitly transmitted between cancer patients and survivors. Being among the newly initiated, I listen to those with more experience than me. I have a real curiosity about how they approach life with cancer and how ultimately transforming living with this disease can be.

I have a friend and colleague who has had a few bouts with cancer. When I learned of my cancer, Bob was the person who I wanted to talk to. One of the first things he told me was that hearing the diagnosis and getting to the actual treatment is the scariest part of the process. I was told on a Wednesday night and on Friday morning I was in a breast cancer clinic. I remember pulling into the parking lot, reading the sign and just melting into tears. I could not fathom it. How did I end up at a cancer center?

When I checked into the clinic I was handed a schedule of my appointments and when I saw I was to consult with a hematology oncologist I felt doomed. I knew that meant chemotherapy and I knew my case was not a simple lumpectomy. Scans, biopsies, waiting on a treatment plan, then realizing a second opinion was essential all added to the uncertainty.

When I would go back to the office after my clinic appointments, I would seek Bob out and tell him about my experience and my feelings. And in his gentle way, he would reassure me that this was the worst part and that my feelings were normal. “It will be fine once you start treatment,” he would tell me. And he was so right. Ninety percent of the time, it is all fine.

Friends offered to connect me to people they knew who had breast cancer, but I declined their offers because I intuitively knew that I would come across the people I would need at the right time. It’s like the Buddhist saying, “When the student is ready, the teacher will appear.” And they continue to show up.

I work with another woman who took me aside one afternoon and we chatted about chemotherapy and we talked about how her life has changed. She told me how she is now more appreciative of life and its inherent beauty. And, I am finding that more and more. The other day at work we had a fruit salad from Whole Foods to celebrate a colleague’s return and I have never been more appreciative of a fruit salad. The color, the taste, the smell, the texture were fantastic.

Then there are the physical changes that take place. The most obvious being the loss of my hair. But there are others too. The sense of taste is altered. I used to be a big vegetable lover. Now, I don’t like the thought of it and I crave fruit, which before I could care less if I ever ate a piece of fruit. Bob and I compare notes all the time and it’s kind of fun when we stumble across things that I have experienced and he hasn’t so I can entertain him with the tragic details.

There also is the whole experience of chemotherapy. For me, it is spiritual. I know that sounds bizarre, but I like to be alone for most of them because I can close my eyes and feel God and his divine helpers at work. Really. Bob preferred to go with his wife and sometimes friends from his church would go along too.

Cancer culture is a parallel universe. And having watched my mother work her way to the end of her life with ovarian cancer, I thought I had a clear idea. My mother and I would talk about her illness and her feelings about it, but now I know I never really understood it. It’s like my understanding of parenting before Caroline. I would watch kids in McDonald’s and when they would misbehave, I would smugly think my child will never act like that. Well, guess what? My very independent child did act badly at times and I was powerless. Again, I didn’t really understand parenting or the love you have for your own child until Caroline.

But as I think about it, everyone lives in many parallel universes. My sister Patricia has a son with autism. Unless, we have child with autism, we can’t begin to understand what that is like. Two years ago, my sister Carolyn’s daughter chose to end her own life at age 17. Who can understand — never mind bear — that? Yet Carolyn does with grace, incredible insight and compassion. I was married to a man who discovered he is gay in his mid 40s. More parallel universes. Isn’t this what makes life so interesting? We never really know about another person, what they’re thinking or how they’re feeling because we just can’t until we experience the exact same thing. And even then, we can only come close, we can never match it.

Anyway, cancer culture. It’s interesting, but it is no more special than other culture. When I can separate my emotions from the process and become an observer of this whole thing, I find it fascinating and it some ways am very appreciative of this experience. Cancer, particularly the chemotherapy, breaks you down physically and it pulls you apart emotionally. Each week as the medicine accumulates in my body there are more changes to note. This week the pain in my bones showed up 72 hours after I finished my infusion and I report this to Bob. And, he nods his head remembering. I tell him I took four Advil and it kept the aches at bay. He smiles at me and tells me how well I am doing. I return to my office and life goes on as it always does.