The days are busy!
Here’s a little snapshot of what life has been like the last two months, since my body fell apart and shook for days, cutting short my trip to the Lunar and Planetary Science Conference. A few people have expressed surprise recently at what my body’s been up to, so I thought I’d summarize it here — you know, so we can talk about OTHER things when we’re at playdate or Mom’s Night Out together! (It’s okay to ask me questions if you want; please just don’t feel that you need to talk about it with me!) I don’t expect you to know all this or anything, but if you’re curious, here’s a little peek inside the window of the hustle-and-bustle before and after a new diagnosis.
1. We tried to diagnose the tremors. That’s one trip to the primary care and two to the oncologist. Two medications to calm the shakes so I could function. A CT scan, a PET/CT, and an attempted brain MRI. Appointments with a neurosurgeon. A trip out to retrieve the CT and PET/CT cds so that they could be interpreted and used by my oncologists. Then, I had the cds in my hands, so naturally I popped them in the computer and looked at them. (I don’t recommend this.) The scans showed six “hot spots” of high levels of hypermetabolic activity, which Dr. Google quickly showed could be nothing but cancer. The four days until the radiologist interpreted the scans and someone would tell me if it really was cancer, and what to do about it, were excruciating. My primary care physician called me in at 4:45 on a Friday afternoon to break the news. We heard, then set up an appointment with my oncologist to see what to do about it. That weekend was awful. Monday brought the oncologist consultation. She kept me on the same medication that we changed to in February, told me it was not necessarily metastasis, and sent me to the surgical oncologist.
2. Once we had the cancer diagnosis, we went to the surgical oncologist for a consultation. She recommended surgery to remove the nodes, and soon. We scheduled the surgery and left for a long-planned week’s vacation in Florida, which sucked, because I spent most of the time trying to figure out whether it was right to cut the cancer out if it was a recurrence of the inflammatory breast cancer, which you never cut first. It wasn’t an easy decision. My oncologist is one of the top docs in the country, and she said cut. My surgeon is at one of the top cancer centers in the country, and she said cut. But the IBC specialists I’d heard of recommended in general not to cut. I asked for help, and the IBC Foundation and IBC Research Foundation executive officers, who I’d helped in the past, went all-out to get me advice from their top docs. The result? Totally mixed. As my husband says, it’s exciting to be at the cutting edge of research, but you sure don’t want to be just past that cutting edge. It’s terribly scary. We tried to relax, but utterly failed. We were able to give the kids a great week at the beach with their grandparents, though, and that was important to us. We cancelled the long-anticipated side trip to see the third-last shuttle launch, however, speeding home in one day to be with a family member (unnamed for privacy reasons) who had become hospitalized and very ill while we were away. We got home late that night, but couldn’t complete our trip to see family as two of us were sneezing and feverish. Not the kind of thing you want to bring into the cardiac care unit. Meanwhile, we scheduled, and canceled, second opinions with a prominent IBC researcher and a top oncologist at another cancer center, both of which only had openings the day before my surgery, several hours away. The kids went back to school, and we told their teachers what was going on, asking them to let us know if they showed any ill effects during the next few weeks and months of treatment. I didn’t make it to TechSavvyMama’s girls’ night out two days before surgery, although I was happily surprised when “the moms” came to me the next night, and we had a wonderful evening together before surgery.
3. Surgery. Surgery took several hours longer than anticipated, because the surgeon put extra effort and care into preserving and reattaching nerves, blood vessels, and lymph vessels in an attempt to keep me from getting lymphedema in my left arm to match my right. A plastic surgeon helped fix the “wing” of extra skin that was left under my arm from the previous surgery, and they removed five inches of my previous scar for testing and restitching. The postsurgical appointment two days later showed that the scar was forming nicely. I was up and around, meeting with Little Bear’s teacher as scheduled, walking up and down the stairs, no problem. By Monday I was back to my old activities, pushing hard. A complication had arisen, however, as the wooshing and gushing inside my chest (air bubble) had settled into a golf-ball sized lump under my armpit. The seroma was painful and made me tense. My husband and I went back to see the surgeon, and she drained the seroma with a giant needle and no anesthetic. When it returned, it quickly swelled to softball-size, and, we repeated this on Wednesday, Thursday, Friday. I didn’t make it to Punditmom’s author salon that night. My husband had his performance review, and we took the car in for repairs. The dryer broke.
4. The next week, the surgeon drained the seroma on Monday, Wednesday, and Friday. I finally saw the neurologist and scheduled the brain MRI. I met with my medical oncologist and heard “no chemo.” Stunned by this, I didn’t know how to deal with it, as I had been in mourning for my missed summer that I anticipated I’d spend in bed. Of course I was happy, but now I was really unsure if we were really fighting the cancer! As it turns out, aromasin is more effective than chemotherapy infusions on hormone-positive recurrences. So if this is a recurrence of the “regular” invasive breast cancer that we suspected would arise in the left breast with the Paget’s disease, then this is totally the right thing to do. It’s a heckuva gamble, though, and I struggled with the decision for weeks. Desperate to be out of the house, I went downtown to a MomCentral blogger event and met Dave Barry. We had a playdate. I made and canceled an appointment with a new lymphedema therapist. I went out with my local moms for dinner. The next morning, we went in for the brain MRI, completed the paperwork, waited for our turn, and then were turned away because I would not let them stick a needle in either arm (as directed by my surgeon because of the lymphedema) and they had no option. I saw my surgeon again, who drained the seroma again and detailed the risks of my planned travel the next day to AbSciCon, the astrobiology science conference where I was to co-lead a workshop and hold a women’s networking event. If I were to fly, the seroma could burst (due to the changing cabin pressure). If it burst, it would be left open to drain, causing continuous release of fluid from my armpit for three weeks to six months; the wound could not be stitched. Adding to this, I was too tired to walk across the room without exertion. Regretfully, I cancelled my trip and felt terrible for letting NASA down.
5. The weekend was mostly horrible. Not only was I too exhausted to move from bed or hammock, I also developed an infection. In my armpit. Lovely. Of course, it was too early to recognize it on Monday, so the surgeon drained it. It’s getting to be a routine now, Monday-Wednesday-Friday. On Wednesday, I had a parent-teacher conference for Widget at school, where I was disappointed to have my concerns about the pre-bullying and “the fighting game” at school (which I had taken to the teachers and the principal repeatedly in recent weeks) met with an accusation that Widget was “fibbing” about the way that classmates treated the autistic child, and that “the fighting game” was not tolerated in the classroom, only on the playground. Still, not acceptable. Irate. Ran late. Cancelled seroma appointment in order to make it to the radiation oncologist on time, which was the exact same time as Widget’s interview and testing at his new school. Drove way too fast upcounty to pick up additional copies of the PET/CT cds at diagnostic center.
6. Radiation treatment was planned. Four to six weeks, every day, to both the armpit and chest. Exactly what I had last time, although possibly not as long. Lovely. Asked for prescription cream preventively, hoping to save some skin. Back downtown to have the seroma drained the next day. Kept up with playdate schedule, only to have friend’s kids get sick and cancel. Infection much worse. Energy sapped. Surgeon’s PA prescribed antibiotic, which I took immediately in hopes that it would relieve the burning sensations in my armpit that were driving me nuts, even as my energy was draining away. Much time in hammock over the next few days. Husband took the kids to their weekend birthday parties, while I bailed on mom blogger fun with Jodifur, Jessica, and friends at Jammin’ Java, with concert sponsored by Curiosity Zone. I sat in front of my computer for hours, searching for help for my kids, having to weather the news and the diagnosis and the treatment without the maturity of understanding. I called national organizations, local hospitals, supportive and complementary care centers, and struck out over and over. The Mothers With Cancer recommended a book by one of our members, Wendy Harpham. I went online to order it and anything else that came up on an Amazon search under “children of cancer patients.” Almost all the books dealt with death and loss. Not helpful. Or encouraging. Ordered 7 books anyway, for me and for them.
7. Now we’re into May, but where was I at 9:00 on Monday? Right back at the hospital so my seroma could be drained. Really irritated with my slow recovery, lack of energy for field trips, and inability to write creatively during this time (ya think?), I hopped on to Angie’s List and scheduled visits from contractors for all those projects we’d been putting off. Twelve contractors (three for each job) came out to give estimates that week, which made me feel like I was accomplishing something, even as I sat on my couch or went back downtown to have my seroma drained. Again. On Thursday, I had to admit that the infection was not healed, and the PA called in a new antibiotic. This should work in five days, she said. Boy, it better.
8. Radiation planning at the radiation center. Back in the pink gowns. Back on the table. Another CT. The measuring. The marking. Bold indelible marker (Sharpie, Susan!) drawn in long strokes on the flat plains of my chest, sealed up with clear tape to preserve it for the tattooing a week or two later. Not painful, but embarrassing, especially when Little Bear asked what they were that night, in all innocence. How do you explain radiation tattoos to a three year old? Playdates. Pediatrician appointments. Meetings to discuss how to handle this with the children, who by now are acting out, showing the stress.
9. I quit work sometime in here, putting away even the pretense of writing the book or completing the tasks. I stopped cleaning, running errands, everything in order to sit calmly with my kids and distract them with simple tasks that would keep our hands busy as I’d sneak in talk about feelings and reassurance that mom was doing everything she could. We went back to church, going regularly for the first time in way too long. We turned inward, concentrating just on each other, letting outside commitments fall where they had to. We lost track of things and missed appointments. We forgave each other. A lot. We snuggled and read books, and just enjoyed watching rain one day. My oldest finally asked if he could catch cancer, and was surprised to hear that the answer was no. My littlest spent days in my lap, cuddled up for reassurance. My oldest slowly, slowly began to recover a bit, gentling his reactions to his brother, and the acting out became less frequent. I concentrated on them, and so did my husband when he wasn’t at work. My mom came to visit for part of a week, and we caught up on chores and rest while she was here, and she gave the boys some quiet time with paints, tiny toy trucks, and the back yard (thanks, Mom!). I started lymphedema treatment and physical therapy again, trying to keep the cords of scar tissue that restrict my movement at bay.
10. We’re still waiting for the second opinion appointment with Sloan Kettering. I spent a whole day once I felt better driving around D.C. signing requests for copies of my medical records, reports, and films to fax to them, only to be told (eventually) that their first available appointment is June 15. I can meet with the doctor then, they told me, after nearly a dozen calls from both me and my surgeon justifying the request, provided that I don’t have treatment first. At all. If I begin treatment, the appointment is canceled, and I’ll have to wait for completion of the treatment, new scans, interpretation of the scans, results, and a new treatment plan decision before I can make the appointment again. And of course then it would be another few weeks for their first available appointment.
So here we are, two months and five days after surgery. A lot has happened. A lot still has to happen. But I’m still here, and I’m spending nearly every moment of every day with my kids, reassuring them, cuddling them, being there for them whenever they need me. They’re the most important part of my life, and I feel good about being able to help them, as little as it is. I miss my work, and I’m easing back into it as time allows. But for now, I’m doing the best I can. Speaking of which, it’s time to pick them up at preschool.