Useless

To make it a bit easier on me, we stayed in the city Sunday and Monday nights. It would have been especially hard to get around with the oxygen tank and all our other stuff if we had gone in for the day or just one overnight, so it really worked out for the best. I did fairly well getting around and not using too much oxygen on Monday, but it really exhausted me for Tuesday and I got pushed around at MSKCC in a wheelchair all day. Today I'm trying to recover, but it will take another day or so, I think.

My appointment with the neurosurgeon went far better than I was anticipating. His nurse had made it sound as if I was worrying unnecessarily about the cyst on the back of my head and that there was nothing he would be able to do about it. When he checked it out yesterday, he was quite concerned about how big it was and how long it had been there. He has recommended a follow-up brain MRI in a month, after which we will meet again. He also told me that if I had any questions or concerns in the meantime, I should contact his office right away. We left there feeling much more confident that he would continue to follow my case even though there is no surgical intervention needed at this time.

Our appointment with Dr. K was a total waste of time. She started the appointment by asking me what I wanted to do next. Is that her plan? After pressing her, she offered a new chemo because she claims that two weeks after my three day treatment, I suffered swelling of the chest tumor, which caused "SVC syndrome." I find it hard to believe that it would be possible to see any affect from the Ifosfamide that quickly, let alone claim it's not working, and I tried to argue for another round or two of it, but she insisted I would be wasting my time. She offered two other potential chemos, one of which I couldn't get at MSKCC but would have to arrange through UMDNJ. I would prefer not to get involved with yet more oncologists outside of New York, so it looks like I'm going to try DTIC, which is given via infusion over an hour or so with lots of anti-nausea medications every three weeks depending on how it affects my blood counts. My first treatment is scheduled for August 10.

Other than offering to take over my oxygen prescription issues, she offered little insight on anything else. She told me my sodium problem would be with me as long as all these other issues are affecting me, although she failed to mention that it's back to normal range (137) now that I'm on 1 gram of sodium per day and a 1.5 liter liquid restriction.

At our request, she set up a meeting with a new thoracic surgeon (the one who failed me in October has left for another hospital), and we are meeting with him next Tuesday to review my history and see what options I might have for the future. After her "emergency radiation" to the chest tumor, it is not possible to do surgery to that area for a certain length of time. We already know this, but we want to know what the future might hold as far as surgery is concerned and planning ahead may be key.

Part of the problem was definitely my fault. I did not have questions prepared in advance because she set up this appointment to follow up after all my recent hospital stays and present a plan, so I thought we would be having a discussion. Apparently not. We are seeing her again next Tuesday and I have already started a long list of issues to discuss. If we do not get the satisfactory answers we seek, we will request a referral to another MSKCC oncologist. This just simply cannot go on without her being involved in all the facets of my care and having a handle on what doctors I'm seeing, what they are doing, and how she needs to be involved. The almost one-hour appointment was a big disappointment.

I'm still fairly short of breath, but I'm breathing better at night and able to sleep at about a 25 degree incline using my new wedge pillow and one other pillow. That's a big improvement from not being able to sleep sitting straight up because I couldn't get enough air. I still have several other medical issues that need addressing, but the sodium seems to be in good shape for now. I'm hopeful that over time things will improve and not put me in for another hospital stay, but every day seems to offer a new challenge, and I need to address these challenges as they come along in whatever my best interest is at the time. Keep your fingers crossed that things are on the way from here!