This morning I woke from my first night with my “husband replacement”… an electric blanket that had me tossing all night… things used to be simple.. I just wanted the “preheat” so the bed would be warm to get into but then instead of shutting off like I thought it would from the directions, it went onto Low and I found myself with everything thrown off on the edge of the bed in the night, finally crawling to the controls (His side, Her side!) and shutting the thing off.
My mind is back to the issue of cancer recurrence. At first my mind wanted to write a letter to the Infusion Center nurses and it was a Thank you letter and I thought of candy and a bag of apples to cover both modes of thinking…. I’ll still get that done. But, what my snapping irritated mind then turned to (after seeing the straight Republican sweep of the elections,) was Cancer care itself.
If people would stop with the pink ribbons and the running around tracks and focusing on luminaria and personal grief we could be more like ACT UP and get some change going. I’m really thinking about local care providers and ours in particular. There is nothing I can do about her because all she was doing was the Standard of Care. Just like in the “AIDS Epidemic” the drugs weren’t working. Even in my little pee brain I can “see” ways Michael’s life could have been extended.. I’m not talking a CURE for Cancer but using currently available technology and logic better as well as maybe a little creativity and risk.
So the tumor marker test (CEA) stopped being effective for his cancer and CT scans give off dangerous amounts of radiation, test your kidneys and are incredibly expensive and can’t be ordered too frequently… what about ultra- sound? Correlate CT findings with ultrasound and use it every two weeks to determine effectiveness of treatment. NEVER wait for arbitrary dates on a calendar… “we will get a CT scan after week such and such (of the chemo agent.)” That puts the patient on the cancer’s timeline. You have to stay out in front on this disease!!!
Next mistake… Hope in clinical trials. If you only have a Phase 1 trial available to you and therefore are looking only at safety and dosing what do you have? We didn’t really comprehend the differences and maybe could have gotten into a Phase 2 trial if we had started sooner in considering it realistically. It is hard to know what should be the “fall back.” Local docs don’t stay up on this .. the vagueness and lack of a working relationship with researchers puts it on the patients to do all the work and it is probably the most confusing web of “what do we do?” there is. Investors have a better handle on new cancer drugs “in the pipeline” than practicing physicians do.
July 2014 (No he didn’t drink the whole thing.)
Example of how connections and referrals go locally, if you are lucky: Dr. Matthews, who I love, put in Michael’s port– the central IV line for his chemo that served him the full two years. I was reading about appendiceal cancer and the cytoreductive surgery with heated intraperitoneal chemo and sent him articles (yes, he gave me his email.) He talked with his friend Dr. Maj in Paradise who knew Dr. Graves in Sacramento and that is how we got the surgery lined up. It’s also how we met Dr. D’Andre the oncologist who works with Dr. Graves there at Sutter. If we had depended on Dr. P., Michael’s doctor, Michael would have died probably in late winter of 2013 because she never moved an inch out of her comfort zone and she’d gone to school in Nebraska and didn’t know any of the “local” resources. She was impeccably “book cancer” but cancer doesn’t read.
The other doctor we loved was that Sutter oncologist, Stacy D’Andre. This was a woman who pulled us out of depression on more than one occasion. She gave us options and made us feel there was a next step. The last one we couldn’t quite grasp (because the cancer got too far into the liver at the end) and that is what my mind dwells on oh so very painfully. However, she was going to give Michael a novel therapy based on the genetic testing of his particular tumor and what the tumor was sensitive to. Our local doctor just thought that was terrible… it’s for breast or stomach… Her mind ended at the two approved colo-rectal cancer cocktails FOLFOX and FOLFIRI (which Michael’s tumors became resistant to.) She left us with no hope and no options. Nice lady and very kind but NOT someone I’d recommend if it is your life in her hands. Cancer shreds everything. You have to Fight and not be so worried about local Standards of Care and stolid time lines.
One of the Infusion nurses said to me at the beginning of the journey that I had to become an expert in his disease and I had to do active case management. (i.e. You don’t wait for them to call you, you call them and you keep on them because to them you are just a “patient” and being patient does NOT work for either buying time nor finding a life long remission from cancer.)
The other little secret and I know you know this, Cancer rates are rising and the system is over-whelmed. The infusion center in Chico is wall to wall every single day with patients. There aren’t enough nurse navigators (there are only nurse navigators for breast cancer patients,) nor a real commitment to follow up– Enloe laid off Registered Nurses in the oncologist offices and replaced them with Med Techs who just don’t have the training to have developed their critical thinking skills which nurses have.. they just take direction.
I guess where I am going with this is we need people to come out from under their isolation and grief and fight for the people who are going through cancer treatment NOW and for those who will get the diseases of cancer in the future. The American Cancer Society doesn’t even offer travel to treatment financial support anymore… many will be trapped in this local situation where the local situation is good but could be many times better. (Another person we loved was a nurse called Ed who, in the beginning, felt like our own personal angel she was so attentive and so knowledgeable and worked to help us learn how to connect the dots in such a loving way.)
As I wrote before, I’m proud to be a nurse not from a personal point of pride but because we are bridge builders and we need a bridge out of local control of the cancer treatment continuum or else to find a way to make it better which is hard because cancer IS complex and we don’t know more than the docs and they are just defending themselves with this Standard of Care, which is understandable from their perspective. I only know one little piece which was our experience and the ways we had to struggle for Michael’s life. (The nurses in the trenches of patient care can’t help either because they have a fixed role and it is non-stop but they are experts in what they do and I will weep tears of gratitude for them now and in the future for the attention and kindness they gave my dear Michael throughout our time at the Cancer Center. No candy or apples can ever demonstrate my appreciation for their goodness.)
I’m glad to be able to share this Call to claim the cancer care continuum even if it is a little befuddled and under-developed and probably won’t go anywhere because my energy is so very low right now. It is too important to leave to the Doctor Knows Best of traditional medicine. (The doctor DOES know best but which doctor and how do I find her/him and when do I fly the local nest and get us to that more knowledgeable doctor with the more creative options?) I have grave regrets about the period between August and September and wish I could have been more prescient and worked harder to get him down to Sutter sooner… it was the only hope we had.
September 2014, about three weeks before death, loving his new Veggie oil processor!