Do I Get Frequent Flier Miles Here?

Last Friday night, two days after starting a new high blood pressure medication (that is a side effect of longterm steriod use), I totally freaked out at home. I thought that Ed wouldn't let me use my oxygen and if I did, he would throw me out. Completely irrational. I said I was never going to sleep again because I couldn't stop worrying about things. Ed sat and tried to calm me down, but it took until about 2 a.m. The next day I felt better but embarassed.

Sunday night it happened again but not as severe, but Monday morning when we were supposed to be going to the hospital for my radiation treatment, I really went off the wall. Ed had to call 911 for an ambulance to Sloan, where I was admitted. They did a CT scan of the brain, told me I was very dehydrated, and had a urinary tract infection from the catheter they placed before I left the hospital two days earlier (and was told to wear until the end of my 10 raditation treatments). They admitted me, did my treatments, started me on another antibiotic, and couldn't find a reason for the problem. I was released on Wednesday afternoon.

Thursday we came in for my 8th treatment and afterwards I had another episode. Since I was here they took me right to urgent care and admitted me again. Neurology aren't sure if it's from the brain surgery and subsequent radiation (and longterm steriod use), some medication, or what. We need to do something to fix this so it never happens again. I'll go home today after they will do some tests and I have my radiation treatment, or tomorrow if I can get treatment (they will do radiation on Saturday but inpatient only). Otherwise we'll come back on Monday for the final treatment.

When I learn something, you'll be the second to know.

Home Again

The simulation was done on Monday morning and I had my first radiation to my spine late that evening. The plan is for 10 treatments, one every day for two weeks. I had the second one on Tuesday late in the afternoon and then I was discharged. Because it was so late, we stayed at my boss's apartment that night to save us the trip back in the morning. After treatment yesterday midday, we came home. It was wonderful to be back in my own bed, although the day completely wore me out. My appointments so far are midday so we can go in later and not get up at 4 am everyday.

The boss flies home from his summer in Montana on Monday. I can't believe the summer is practically over. Seems I've spent most of it in hospitals. We discussed my continuing to work from home as long as I need to, although I have to go in every seven to 10 days to do the bills (Ed will drive me in and home). He has been amazingly patient and generous. It can't be easy to have one employee and have her in such an everchanging predicament. I don't know what I would do if I were employed at a regular company. No patience or generousity there.

Nothing else to report at this time. If anything changes (LOL), I'll be back!

Found the Problem

The repeat MRI showed that there is a small lesion (probably another metastasis, about 1 cm. in size -- so very small) located at the top of where the saccral nerves branch off to your lower body. The radiation oncology department is setting up a plan and an simulation for me for Monday so they can also hopefully start treatment that day as well. I won't know the schedule until they are done with the plan, but it will probably involve at least three treatments. So I am here at least until Monday, perhaps through Tuesday since I have that early morning appointment with the thoracic surgeon followed now by radiation. I might just stay through Tuesday on their dime before going home. They have inconvenienced me by having me stay through the weekend without any more tests to be performed and no doctors around at all tomorrow unless there was an emergency, so if it turns out to be more convenient for us to have me stay an extra night, I will.

Some of my numbers are bouncing around a bit, mainly because of the high dose of steriods I've been on. My sodium was good last week (137) but as of Friday, it was down to 129 so I am back on sodium for a while. My blood pressure has been high, so they put me on a medication to lower that. My blood sugar has been good, so nothing to worry about there, but supposedly today my calcium was down so they are giving me calcium every day. My breathing is good one day and not so good the next, even with the oxygen on. I have no idea why that is. Everytime I do take the oxygen off because I don't feel I need it, one of the nurses comes it and tells me I should be wearing it because my oxygen saturation level goes down several points. I just can't win.

When I find out about the radiation plan, I will update this again. In the meantime, don't worry too much about me. At least they are taking good care of me as long as I'm here.

Just came back from my first real walking since I got here on Wednesday night and it felt great. I'll probably be sore from it tomorrow, but it was worth it to get off my butt. LOL

Wrote too soon

I'm back in Sloan for a few days. Dr. K called last night at 5 to ask me to come in to Urgent Care so a team of specialists could get together and figure out what's causing my numbness and other issues. Ed dropped me off here last night and I was admitted to my room at 11:30 last night. I was seen by the entire neurology department twice this morning and they ordered a new MRI of my lower spine because they believe that something is pressing on my 3-5 saccral nerves and want to redo the MRI even though I had one done at CentraState a week ago. Of course, everything in the hospital moves at a snail's pace, so I'm waiting and napping until they come for me. I'm very hopeful that this will finally resolve my problem with urination, which has been going on in various modes since Memorial Day weekend when I had to be catherized because I couldn't go. Now I have the opposite problem. Keeping my fingers crossed.

I have seen a patient representative about getting a new oncologist. I can no longer rely on Dr. K, especially after asking me what the next step should be. I agree that we need to do chemo if I don't have radiation to my nerves, and I have reached out to my group for advice on other chemos. One person has suggested Votrient, which has given several members a very good response, so I will be discussing this with the new oncologist and try to get things started by the time I leave here. I'll let you know what happens and when.

I'm still swollen and my blood pressure and pulse rate are high, while my oxygen saturation is only 92 despite being on oxygen all the time. The nurse practioner is coming in to discuss those issue and I'm on blood pressure meds now in addition to being on the high dose steriod. At least my skin has not been painful today as it sometimes gets because of the amount of swelling.

I've just been called down for the test, so I'll post later. Wish me luck in getting this finally taken care of, regardless of what they find.

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!