I am without a doubt a land lubber!
We left for Texas on Sunday and just got back yesterday afternoon. Both were straight flights from LAX to Dallas/Fort Worth. The flight there was full, and Al and I had seat assignments that separated us by about 5 rows. Thankfully, Al got the two women next to him to agree to change seats and we sat together. I had a good cry after we got all that settled. I hate traveling by plane as it is, and when the trip was for the purpose it was, it just added to the overwhelming emotion of it all. People were wondering about me I am sure. I just took off my hat to expose my bald head through most of the flight- figured I’d remove all doubt! That is becoming less of a task because my eyebrows and eyelashes are really starting to thin. The flight back was much less crowded. We were able to relocate to the exit row and had a seat in between. But I cried on the way back too. I really hate how this has changed my life- how this cancer has forced its way into my top priority list.
The good thing about the trip is that Al has a sister who lives in Arlington. He wasn’t raised with her, and other than a few Christmas cards back and forth the past couple years (wives have a way of facilitating that sort of thing, don’t they?), there has been very little contact. In fact, we were so absorbed with trying to make arrangements to make the trip we didn’t even realize the cancer center we’d be visiting was in the same town that she lived in! A phone call between Al and his brother prompted a phone call to his sister, and we made arrangements to meet. That was the highlight of the trip, and also a big help. She picked us up from the airport and dropped us off. Her and her husband also cooked the best filet mignon I have ever eaten in my life (she’s a grocery store butcher)- so that was a privilege! It’s always a blessing when people choose to join our circle of family- which is constituted of more than just biological relations. I think Bobbie and her husband, Justin, joined our family this week, and we are honored.
The cancer center itself was nothing fabulous. It’s bigger than where I go now for treatment, but doesn’t even compare to the City of Hope. It’s a private group of oncologists/radiologists/hematologists, so very similar to CBCC here in Bakersfield. We waited 2 1/2 hours past our scheduled appointment to see the Dr. Of course I complained, but my complaint was met with a light hearted comment: “they’ve been trying to reform me for years”. I guess the Arlington Cancer Center has a bad reputation for long waits in the waiting room. But he did spent 2 hours with us once we got him. We taped the appointment, and I’m glad. I listened to it during chemo today, and was able to take notes. I was listening when we were there, but was under this fog of emotion that disabled it from “soaking in”.
Basically, with Dr. Blumenschein’s treatment protocol, he has been able to see 65% of women with IBC disease-free at 10 years. He says that all his relapses have occurred prior to 42 months, so if I can make it the first 3 years without a relapse, I’m “outta the woods”. Dr. Somlo at City of Hope only reported 47% disease-free rates at 5 years. And Dr. B had some stuff to say about high dose chemo/stem cell rescue. He didn’t say out right not to do it. It’s better than nothing. But he did say that there are more effective and less toxic ways to treat IBC. I wouldn’t characterize Dr. B as “alternative” in the sense that he advocates homeopathic, herbal, or non-medical treatments, but I would definitely call him “alternative” in the sense that he doesn’t subscribe to the mainstream medical model. He uses conventional chemotherapies, but in combinations that are unconventional, and uses the chemotherapies irrespective of the approved usage. He told a story of a woman who came to him from the Mayo clinic after being sent home to die. Her cancer had metastasized to her liver, her bones, and her brain. She refused to go home, so he treated her with a single cycle of an aggressive combination of chemotherapies and saw immediate and dramatic results- enough to send her back to Mayo to finish treatment. He said he got a letter from the head Dr. there calling him “unethical” because he utilized a combination chemotherapy to treat metastasized breast cancer when it had not be tried in a double-blind, random clinical trial with results published in a peer reviewed medical journal first. All Dr. B cared about was that he saved this woman from death.
At first a little red flag raised. I backed off for a moment thinking that any doctor who tells me he received a letter from another stating he is unethical is someone to be cautious of. And indeed I am. But I also look at his long list of qualifications- graduated in 1963 from Cornell University Medical School, post-graduate training was conducted at Bellevue Hospital, New York; U.S. Public Health Service, National Cancer Institute, Bethesda, Maryland; Duke Hospital, Durham, North Carolina; and Passavant Memorial Hospital, Chicago, Illinois. He also served 10 years as Chief of the Medical Breast Service at the M.D. Anderson Hospital and Tumor Institute in Houston, Texas (which has an exemplary and world-wide reputation in terms of breast cancer treatment). I can’t help but think that Dr. B is a man who has had a bird’s eye view, and isn’t afraid to call it like he sees it. I imagine his frustration with the “establishment” and it’s agendas being irreconcilable with his own values, may be the main reason he went to private practice. He told me that he thought it was unethical to randomly assign a woman with breast cancer to a placebo or less effective set of drugs (because Dr.’s get a good sense of what is working and what isn’t really early on in their trials) simply to add “credibility” to the study. He refuses to do these type of studies, and must instead accept the insults and criticisms that come from his colleagues because he has “sold out”. I can’t say I disagree with Dr. B’s approach. So who really are the unethical people in the whole scheme? It is hard to say, and I may be tainted by my own disillusionment with the social service professions that I have so eagerly sought?
Dr. B’s treatments are all available here in Bakersfield. It isn’t anything magical or spectacular. Just common and simplistic really. What is perhaps novel to the majority of oncological practice is the combinations of drugs, number of cycles, and whatnot. So the challenge will be to overcome the resistance on the part of my oncologist here, and on the part of the insurance company. Please pray about this. I can’t say I feel some mystical peace about the whole thing, but I can say I don’t feel fearful or anxious about it in the same ways I do the City of Hope treatment. Actually, I am too complacent about it. Perhaps I am just worn out? But I will advocate for Dr. B’s treatment, and see what happens. One thing Dr. B and I did agree on- my current protocol in itself is not enough to eradicate this cancer. In fact, there has been little change in the size of my lymph nodes, and I am over half way done with treatment. This “inching along” approach is simply making more resistant cancer cells. Dr. B also gave me some really good insight into a few things. I won’t go into that much detail in order to spare you the technical boredom, but I will tell you he advocated for a double mastectomy, and as soon as possible.
I was thinking about that myself. After talking to a woman from church who had a mastectomy and reconstruction (tram flap), I was thinking maybe having both my breasts removed is the best thing- it decreases risk of a reoccurrence in my other breast since it is gone, and solves the problem of being “lopsided” (or a “one-eyed jack” as me and Al joke about). That decision is coming up very quickly…….probably early October.
So the future continues to hang in the balance, and there are no guarantees either path I take. One path seems better than the other, and yet I will have a lot of resistance forcing me back. Ultimately it is God who is control, and whichever direction is a leap of faith. But I am thankful to have the chance to exercise that faith in such major ways. If all I had was one choice. I don’t think I would fare as well! I am tired. I have only slept about 5 hours a night the past 3 nights. It’s not stress really. I think just the natural effect of all this junk in my body. I had chemo today- 2 more treatments to go if I continue on my current schedule. My white blood count was 2x’s the high normal- don’t know what that’s about, but could be a sign of some serious stuff. They decided to go ahead with treatment today, but are watching my blood counts closely. The last treatment I got about killed me. The bone and muscle pain was so bad I had to take two Vicodin left over from my surgeries. I hadn’t even taken any after my surgery, so you know it had to be pretty bad. One day I could barely walk. So I hope that it isn’t that bad this time around. I have the whole week off just in case. I see Dr. Patel again next week. He has me slated for 15 minutes, and I had to write a note to ask for at least an hour of his time to go over all this new information. Dr. B said he would be sending his recommendations to Patel on formal letterhead (just the way you deal with colleagues, he says). But I didn’t want to wait too long for that to come- after all, I waited 2 1/2 hours just to see him! So I wrote a note outlining everything important and left it with Dr. Patel so he wouldn’t be bombarded at the appointment. He’ll have time to consider, digest, and prepare good responses. Please continue to pray……….