Comfort

As I mentioned last week, the surgeon saw an extra something on the post-chemo MRI which merited a biopsy. I should apologize for referring to it a "mass," since that sounds, well, massive. Let's call it a "spot." The spot was slightly anterior (in front of) and lateral (to the outside of) to the existing tumor.

Unfortunately, the radiologist didn't feel that an ultrasound-guided biopsy would work, since she couldn't see a match between the images produced by different imaging techniques. She recommended an MRI-guided core biopsy. That meant coming back on Friday and spending nearly five hours at the hospital. I received an MRI to establish the biopsy target, received the biopsy, and then went through additional tests.

Nurses continue to rock, especially the ones I've encountered during my cancer treatment. On Thursday, I was attended by Nurse J., and Nurse S., a short, stocky guy who cheered me by recounting his favorite Dave Chappelle sketches. "You were an ideal patient!" Nurse S. said as they wheeled me out of the MRI room on a gurney. "Really?" I asked, "What do other patients do?" "They get all frightened and start thrashing around inside the tube." While he spoke, he rubbed my bald head. I found it soothing. "How is my Elisa?" asked Nurse J. with her heavy filipino accent. She dressed my incision, and piled warm blankets on my legs and chest. I felt like a baby, but in a good way. The radiologist came over to see how I was doing, and noticed the blankets. She became nostalgic. "When I was doing night call, sometimes those warm blankets were the only thing that kept me going. I'd finally get a break at 2 or 3 in the morning, and I'd just go to the storage room and wrap myself in one of those." Light-headed from hunger and a small reaction to the epinephrine added to the local anesthesia, I was released in the wild at about 2:00 p.m. As a free woman with a hole in her boob, my first act was to buy a latte and cookie.

Today, I rewarded myself with a bratwurst and duck fat fries at Hot Doug's. Then a friend and I went to Dusty Groove, a record store which specializes in soul, hip-hop and various world music genres. I bought a compilation, Tropicalia: A Brazilian Revolution in Sound and Forever Changes. Love. Here's Gilberto Gil and Os Mutantes performing Domingo no Parque (Sunday in the Park), one of the songs included on Tropicalia.

Chemo: The End

Goodbye, Baxter 6300 I.V Pump. I'll miss hearing you erupt into loud alarm after I exercised the utmost care while rolling you into the toilet. You always waited until I was seated on the throne, you joker. But most of all, I'll miss the way you drip, drip, dripped poison into my veins. May we never meet again.

I completed the 8th and final chemo today. I told Nurse L that she was the only thing I was going to miss about it, and she gave me a big hug. Dr. G, who I'll see again after my radiation, examined my breast and said that the tumor looked "good," and that it was hardly palpable. Tomorrow, I call the surgeon* and try to get a tentative date. However, he'll probably want another MRI before proceeding. The process of arranging cancer treatment is reminiscent of using more than one contractor on a home improvement project. You have to do all the coordination with the different trades, continue to monitor the work quality and progress, and then the flooring guy (or oncologist) suddenly doesn't show up for a month. I need to hire a general contractor--one that specializes in cancer.

There's one more plus to ending chemotherapy: I won't have to buy a yet larger pair of "fat" jeans. I stepped on the scale to be weighed today, and discovered that I had gained another three pounds since my last visit. I weigh more than I ever have in my life. And I'm bald. Fortunately, both are reversable.

*Yes, my husband and I both are positive the oncologist told us his office would contact the surgeon. You have to get it in writing from these people.

Chemo 6/8

Almost done...almost done...that's my mantra. Once again, my oncologist Dr. G. was out, and the nurse practitioner examined me. My husband was disappointed, most especially since he was prepared to "tear him a new one" over the vague information about my surgery schedule and the lack of palliative care. BCH* does a great job with the drug delivery, but not so much with information-sharing or emotional support.

Friends have asked me the following:

Do they have a support group? I dunnoh--can't find evidence of any associated with the hospital. They do have a brochure for Gilda's Club, which offers support services. The Nurse K., the nurse practitioner who examined me this time, offered to give me the contact information for another nurse who had survived breast cancer and is now on Tamoxifen, an estrogen antagonist that has some nasty side-effects itself. It's the first time I've received any offer from BCH staff to be put in touch with another survivor.

Do they offer therapeutic massage? No. As a matter of fact, I haven't seen evidence of any palliative care (i.e. counseling, support groups, meditation or yoga, massage) Some smaller Chicago area hospitals offer these services, but not BCH.

Oh, and I received my first billing for chemotherapy. If I didn't have insurance, would have to pay $2500 per session. That doesn't include the cost for blood work or examinations. Every time Dr. G looks at my boobs for ten minutes: $158.

Am I receiving the best treatment for my cancer? In fact, I probably am receiving excellent care. So why do I feel so uncared for? Perhaps BCH will eventually launch a research study on whether patients are also feeling human beings. I hope the results are statistically significant.

The final chemo drug Taxotere Paclitaxel has a new set of side effects, including bone pain, watery eyes, and rosacea-like pimples and rash on my upper body. My eyelashes and eyebrows are scanty, now. About four or five days after chemo I get very tired and easily winded--probably a sign that both my white and red blood cell counts are bottoming out. My hot flashes are on a more predictable schedule, although one that interferes with early morning sleep. From about 4 to 6 am, it's covers off, covers on, over and over. During this time, sleep is in short snatches until the next one hits.

That's all the news, which as per usual is in the form of a complaint. They were right: when you have your health, you have everything. Too bad I had to get terribly sick to appreciate that axiom.

*Big Chicago Hospital

Chemo 3/8

I just had my third chemotherapy session of eight. Miracle of miracles: no one vomiting or dry heaving in our earshot, and this time we got a nice private room with a work table. Once again, I found the strength to play Snake on my phone. I then discovered that the default Steven Hawking-like voice commands could be customized to say, for example, "ELEESA EES GRAY-EAT," and "JOE EES THMAAN."

Nurse L was back from vacation. She noted that my birthday was coming up soon. Yes, I told her, and my birthday has shown me the upside of having cancer. Although I still have another year, I was beginning to dread my 50th birthday. Now, when I hit that milestone, especially if I'm cancer-free, I'll celebrate like hell. I'm thinking a bottle of Veuve Clicquot in Paris. That sounds about right.

Chemo 1/8

Terrified, I sat in the oncology center waiting room, reading the Big Pink Breast Book given to me by the surgeon. Tears started welling out of my eyes and down my cheeks. It seems like I can always locate something in that book that causes me to cry right before meeting with the oncology staff.

This time, it was the illustration of a chemotherapy port. A chemo port turns you into a human juice box for duration of your treatment. Instead of finding a suitable vein on your arm, the technician can just pop off your cap, and voila!, you're ready for infusion with the toxic chemical du jour. Throughout my testing and diagnosis, more than one medical staff person mentioned the port, insisting that I could "shower and swim, and if I wore high-cut tops, nobody will even know it's there." That seemed beside the point, considering the fact that if I got a port, it would require me to ignore a tube that appears, from the illustration, to be going pretty deep into one of my chest veins. It made my flesh crawl. If they tried to push this port thing on me again, I was going to fight it.

Imagine my joy when Nurse L, examining my arm, cried "Oh, you have BEAUTIFUL veins! I can't imagine why anyone would suggest a port for you." I will still enjoy hearing "you have pretty eyes," but no complement on my appearance can ever recreate the elation of that moment.

Nurse L, who was patient and genuinely caring, was an enormous help. She at first sat down with us and explained both the therapy and the many, many bottles of antinausea medicine I was to take home. Nurse L. also minimized, in my case, the possible side-effects of chemotherapy, explaining that many people, especially those previously healthy as myself, have relatively little nausea or weakness. Still, I had to inject myself with Neulasta, a bone-marrow stimulant, within 24 hours. After a brief demonstration, I was sure I could do it.

The little private chemo room was a comfortable as is possible with such a procedure. I sat on a hospital bed, headboard up, so I could read, and my husband sat in comfortable upholstered rocker with a footrest. We also had a tv with dvd recorder; maybe a good way to knock off those Sopranos we missed. Nurse L. inserted the I.V. needle into a vein on my right hand, and secured it with a butterfly clip and tape.

I started with a saline drip, then a liquid form of anti-nausea medicine, Ativan. Ativan is also an anti-anxiety drug and sedative, two effects which were spot-on considering the circumstances. Then, the cancer-killing stuff: Adriamycin and Cyclophosphamide. The medicine was a dark rose color, and I was warned that I would urinate a lighter shade of this for a while.

While I infused, I played the Snake game on my cell, having discovered that reading was nearly impossible. My husband compensated for my anti-intellectualism by digging into the latest issue of New York Review of Books. Suddenly, the woman receiving chemo across the hall leaped up, and grabbed her I.V. stand, and hustled to the bathroom. I haven't heard retching like that since my husband got food poisoning at a cook-out in Minneapolis. It was horrible-sounding, since it was clear she had nothing in her stomach left to expel. Nurse L. ran back to our room, ostensibly to adjust something on my I.V. "I don't believe her vomiting has to do with the medications." she said, mysteriously. Wow. If it had nothing to do with the chemo drugs, then what were the alternatives: the flu? morning sickness? watching The View?

The entire procedure took about two hours, including the question and answer session at the beginning. Nurse L. warned me that the second cycle (probably starting with Chemo 5/8), will take about four hours. She also started the process of setting up regular appointments, although she has to coordinate first with the oncologist. We are shooting for Monday mornings at 7:30, since in medical care, the early bird gets the worms, or waits as little as possible, that is.

I felt great at this point. Ativan, I heart you. I meandered into the parking garage, more than willing to climb into any open car door. Everyone seemed so nice. Fortunately husband poured me into the Escort, and we were off to pick up two equally drugged cats, both of which had suffered tooth extractions earlier in the day. When we arrived, we were surprised to find out that Alma had a little impromptu mastectomy as well. The vet had tried to contact us, but our cells didn't work deep inside the walls of BCH. They found lumps near two of her mammaries, and decided to remove the entire side as a preventative measure. So much for the theory that breast-feeding lowers the risk of cancer. During an eight-month period, she had twelve different kittens latched on to her. Her boobs became so pendulous, the vet who spayed her just worked around them as best he could. After she came home, all shaved and (finally) sterile, she reminded me of the she-wolf who nursed Romulus and Remus.

The nausea hasn't been unbearable, it's more like that inkling that you may be coming down with something. The fatigue is a bigger issue, and they warned me that my white blood cell count would probably bottom out next week. At times, red blood cell counts drop as well, and patients become anemic. The Neulasta, which I self-injected this morning, will cause bone aches as my marrow goes into overdrive to produce more white blood cells.

Discussing medical conditions is one of the more deadly forms of discourse, IMO. If given the choice between hearing someone's dream or hearing about their gall bladder surgery, it's always a toss up. I promise more Not Cancer! stories, including those involving the CTA in the near future.

Love to all,
E