I doubt anyone will read this so I will just rant over what seems to be an impossible situation.
My wife of 22 years, we've been together 26 was diagnosed with multiple myeloma five years ago in october 2010. Life hasn't been the same since. We have tried everything to help cure or get her into remission. Autologous bone marrow tranplant, not fun, Allogenic bone marrow tranplant, even less fun. Just when we thought we had it under control, throw in a new twist, mutated to Plasma Cell Leukemia. As it turns out, the bone marrow transplants did the trick of removing the cancer from the bone marrow, but insidious as cancer is, it decided to move into the soft tissue. The first tumor showed up on the side of her eye, so the doctors in their infinite wisdom, chose to use radiation on that. It burned through that tumor like a knife through butter. Only problem was that it wasn't the only tumor, another showed up where she had a Quinten Catheter as was used for the process of doing the transplant, another tumor, this time in her neck, more radiation treatments. Then again for the spot where they did the bone marrow biopsy in her pelvis, more radiation treatments. She got to come home and they continued with chemotherapy, radiation, blood tests, MRI's, still can't seem to kick the plasmacytomas. Another tumor developed in her lower left leg, another and another and another. more radiation. What they told us eventually is that each time you receive radiation treatments, you loose that area of your bone marrow to produce healthy blood, you know you product blood to fight all manner of disease and infection from a healthy immune system. Low and behold, one day she gets a fever, emergency room, ICU, a serious blood infection has developed, called sepsis. The local hospital can't handle her care so she is back to the original care team at UCSF, they have her for three weeks, keep in mind this has been going on for a year now. The poor girl has had what is called a hickman catheter with three lumens, its used for all manner of blood transfers, chemo, you name it. Well enough, she gets to come home, on anti fungal, bacterial, etc... A week goes by and she has another fever, this time we are blessed and get to spend another week as a critically ill patient in Dominican hospital. The Immunologist, along with what is now a team of caregivers and doctors deteremine that the Pseudomonas bacteria has made a home in the Hickman Catheter, the decision is made to remove it and install a Pic Line in its place. As if this hasn't been enough, the doctors decide that it would be a good idea to get an Magnetic Resonance Image of her head, low and behold, the find that she has a tumor in C2-C3, the doctors are very concerned and decide that more radiation treatment is needed, even though they never finished the treatment on the one tumor in her left leg that has pretty much crippled her. To add insult to injury, the doctor tells us that since she has had so much radiation, that they can't treat any of the other tumors that have developed. I can't say that anything has gotten better, I stopped working over a month ago to be primary caregiver, trips to UCSF in San Francisco, trips to the infusion center, endless, endless. So last week, with all the doctors telling us there is nothing else they can do, they recommend Hospice. That in itself is a whole new legion of caregivers that treat people with chronic illness. Meanwhile, I try and live a life of care and hope. Lesson learned, its never to soon to start alternative therapys, The doctors won't prescribe medical marijuana, soursop, or anything outside of what they know, pharmacutical drugs and that whole frightenly expensive business. So we are taking it one day at a time, living on oxycotin and oxycodone, at the mercy of a hospice nurse. I am so tired, mentally, emotionally and physically.
All I want to do is go for a Snurf.
Life is precious enjoy every moment.
JG
