After 6 weeks of living with fractured ribs, they have finally concluded that the fractures are, in fact, due to more disease at the fracture sites. I am unable to do much around the house, I can’t even lift something in and out of the oven. Anyone who knows how much I love to cook and bake, knows this is deeply breaking my spirit. Especially when it’s cold outside, I love to cook. My bones are very brittle and showing loosenings in the bones, worsening osteoporosis. I can’t breathe, cough, sneeze, and I have a very hard time getting up from laying down without pain. There is also new metastases on my sternum which is very painful, also making it hard to breathe. As well as new places on my right scapula, right knee, spine and more on my skull. Which pretty much means all of my bones are diseased, as I already had lesions on both femurs, right hip, all over the pelvic bone, lower spine, right humerus and skull.
The only thing they have for bone pain is radiation. But I don’t do well with radiation, it has always made me very ill. I am still not completely well from the last round of radiation they did on my left femur in November. I’ve previously had radiation to the chest, right humerus, right hip and spine, and my left femur. So this will be my 5th round. I do not want to do radiation again, at all. My bones are so brittle as it is. But if it will take the pain away so I can sneeze again, I don’t see much choice. I also do not handle narcotics well in any way. It’s almost impossible for me to keep them down, even when they give me anti-nausea meds beforehand or along with.
Right now I am taking a chemo pill called Xeloda. I always feel like Alice in Wonderland when I take them because they are huge pills. I take 3 in the morning and 2 at night. The hard part is they want me to take them 30 minutes after I eat and keep the dosing 12 hours apart. It’s difficult for me to keep anything down before the afternoon, I am nauseous every morning and I get sick. I have to try to keep fluids down for most of the morning. So I don’t usually want food until dinner time. And now, I am waiting for them to decide whether this treatment is working. If not, they will change the plan again.
Alongside dealing with my pain and the cancer spreading, I’ve had to deal with a nurse who has no business being a head nurse. She has been a complete nightmare. The very first day I went to Dr. McIntyre, I saw that she completely contradicts the doctor and herself. She has sent me all over Dallas area for scans, consultations and lab work only to find out they don’t take my insurance. I now know that even though she makes an appointment for me somewhere, that I still have to call and make sure everything is correct. She can’t even access my port to draw blood without getting blood everywhere, and I mean everywhere. She called me for my CT scan disk, which is 10 feet across the hall from the oncology department while I live an hour away. The list goes on and on, and I have only been there since July. Shawn has spoken to the office manager, who didn’t help with the situation. I’ve given them a few chances, and now I am looking for a new local breast oncologist.
I need to go back to M.D. Anderson but I am having issues with insurance. Dr. Litton at MD has been keeping up with my progression, and collaborating monthly with Dr. McIntyre here in Dallas. They went to med school together, and that was the reason I started to going to Dr. McIntyre. I like McIntyre, it’s just her nurse that is causing issues. It’s just a lot to deal with when I am in so much pain.
Every treatment they put me through, takes a little bit more energy away from me. I can definitely see why people eventually give up fighting, but I just will not ever stop. I’ve been here much longer than I was ever supposed to be, because I am fighting with everything I can. My will has kept me going for the last 6 years. This is NOT what will take me down. But this nurse might….
Thank you for reading.