How do you prepare for surgery?
The hospital thinks they know. When you call for your pre-op instructions, they tell you when to stop eating and drinking, whether to take your aromasin and neurontin, what soap to use for your morning shower, what time to be at the hospital, and what hospital entrance to use, and then they ask, “Do you have any questions, dear?”
Why yes, I do.
I have questions. This week, I have had questions about everything, from, “Will this cure my cancer?” to “How will I know if or when the cancer comes back?” to “What do I tell my children?” and “Should I spend today getting my affairs in order, hugging my children obsessively until they protest, making the house ready for a convalescence, or is it okay to just proceed as if it were an ordinary day?”
Should I do laundry, or review my will?
It’s a minor surgery, they say, outpatient even, and will be no big deal. I believe that. It is a minor surgery. It is no big deal. Well, to them. To me, it is probably the last day I can lift things with my left arm, since I have a high risk of developing lymphedema over there as well. It’s the last time I can lift my children for a hug without feeling guilty, since they’re well over 10 pounds now, and that’s my limit without triggering my arm to swell from lymphedema. It’s the last time we can remove a body part to remove the cancer, I think, since I kind of need the other ones, unless I get a recurrence in just one kidney. The next time the cancer comes back, if it comes back, we’ll have to start chemo, and we won’t know when to stop.
Because remember, there is no research to tell cancer patients when maintenance chemo can be stopped.
There isn’t even conclusive research to tell me whether to have surgery tomorrow, to start chemo instead, or to simply continue on with the aromasin or another drug. There are opinions based on experience — oh, there are plenty of those — and I’ve gotten opinion after opinion from oncologists, nurses, radiation oncologists, advocates, patients, and others who are just looking out for my welfare. I appreciate it. I do. I feel SO much better today, going into surgery, than I did last week when I got the diagnosis.
I still have questions, but they are now questions that cannot be answered without additional medical research into the nature of this disease.
When I got the diagnosis, I skipped town. My family and I threw some clothes into a suitcase and the kids in the car and we left for the family vacation that we’d planned for well over a year. We spent the week in Florida, at the beach, at the pool, together with grandparents and cousins and in-laws, and we smiled and helped the children have a vacation to remember while we, my husband and I, checked our iPhone and our Blackberry and called doctors and nurses and advocates and hoped for encouraging news, conclusive recommendations, or at least appointments with the best of the best.
We were helped a lot by a lot of people. Thank you. But in the end, it all came down to this:
- There is no (known) cure for cancer.
- Cancers are as individual as the individuals that carry them.
The research on IBC metastasis is so new, and so limited, that no one can say for sure, “Do this, not that,” and if they do? Well, they’re perhaps too confident, as there is not yet a consensus in the medical community or papers in the literature.
We need the research.
I will do my part. Tomorrow, as the six tumors are removed from my body, they will be flash frozen in vials designed to keep them usable by scientists and medical researchers. The doctors will use what they need for me, and then the rest will be sent to the IBC Biobank for future research or out for the Target Now Complete testing, one of the first to look at molecular markers that may indicate additional options for my treatment. I’m trying to make the latter work out, but if not, I’ll send it to the Biobank in hopes that it will help someone else.
I’ve checked ClinicalTrials.gov for inflammatory breast cancer trials, and signed up for Avon’s Army of Women to be notified when a researcher is looking for people to participate in studies of new treatments, complementary medicine, or information dissemination, online or in my area. It’s important, this research, and the Army of Women is gathering 1 million women together who are willing to participate, locally in person or online, with and without cancer, so that the scientists can study what causes, and what cures, cancer. If you can, please join the Army with me — and say yes to just one study this year if the opportunity arrives in your in-box.
We need the research. And we need it now.