Difficult Decisions

Today was quite an interesting day full of information and decisions. I'll start out with my experience at Stanford...

I went in for my usual labs and a chest x-ray and then waited to see both my oncologist and BMT doctor. My BMT doctor came into the room first and asked me a question that caught me by surprise. He asked what I wanted to do in terms of my treatment. I guess I should have known what he was talking about since the last time I saw him we briefly discussed the possibility of doing donor lymphocyte infusions, however it just caught me off guard. We talked about how my disease has been stable the past few months and how he considers the amount of disease that I have right now (well as of my last CT scan in July) to be "minimal." He still believes that this is not attributed to the chemo I've been on, but rather to the donor cells I received from my second transplant. My oncologist of course thinks differently, she believes that it's the chemo that's keeping my disease stable and not the transplant. No one will ever know for sure, it could be a combination of both (that's what I think). Anyway, there's a new clinical trial being done by the BMT team at Stanford involving cytokine-induced killer cells. I don't know all the details/specifics involving the trial, but basically they would be giving me more donor cells (considering my donor is still available/eligible to donate). There is a chance that this trial could decrease my disease, put me in remission, do nothing at all, or make me VERY sick (life threatening sick) by causing me to get GVHD. The reason my chance for severe GVHD would be high is because I recently had an outbreak of skin GVHD. Usually this trial is done on patients who haven't shown a sign of GHVD within a year. Both him and my oncologist are very concerned about this and don't know if the risks are worth it, but will support me 100% on whatever I decide to do. Ultimately they know that I will do anything and risk my life entirely for any chance of remission, cure, or even more time. I've been through so much the past three years and I just can't see me not taking the risk. I am still planning to do some research on it. It will take approximately eight weeks for my donor to be contacted and re-tested so I have time to think about it. Meanwhile, I will continue with my chemo and after the next round I'll have another PET/CT scan to evaluate my disease again and see if this is still a viable option.

Another thing that my oncologist and I discussed today is the possibility of doing something called "ablation" to the mass in my liver. Ablation is the use of radioactive waves to ablate a tumor/mass. They usually don't do this to the liver because of the side effects (hepatitis being the riskiest one), but it's something that she will consider looking into. Again this is something that I have discussed with her in the past and we're just now starting to talk about it more seriously. She seems to be very pleased with the way I'm responding to Velban (the chemo I'm on now) and would prefer that I don't put myself at risk for other complications, but is very supportive of whatever I choose to do.

After all the treatment talk I got my blood counts, which were great, and I got the "go ahead" to do chemo. My chest x-ray didn't seem to show much change and although they did see something kind of funny on it, they think it might have been positional and will look into it further when I have the PET/CT done. I did have to get some magnesium by IV with my chemo today since that was a little low. I'm scheduled to return in two weeks again for my 14th round of chemo.

The other big news of the day is that I'm returning to work starting next Monday. I know this is probably a big shock to most of you, but it's actually something I've been considering and wanting to do for the past few months. I had gotten the okay from my doctor a few weeks back and had told Siebel about it and they were looking into finding a position for me. Part of it had to do with the whole insurance problem, but really I miss the daily interaction with people and just really enjoyed working there that I wanted to go back. This morning I talked to my former boss as well as another person in HR and they asked me if I could start on Monday. I'm not sure exactly what I'll be doing yet, but most likely it will be helping out in either the stock, benefits, or employee service center areas of HR. I'll probably start out working approximately 20-24 hours a week and if I can handle that I will try for 30 hours so I can get back on regular benefits. I'm beyond excited about this opportunity, but at the same time I'm very anxious about returning to work since I'm not sure if I'll be able to handle it. It's very unpredictable how I feel on a day-to-day basis, but I'm willing to give it a shot. Fortunately Chris works pretty close so we will most likely be able to carpool, which will help out. Now I'll just have to see if I can fit into all my work clothes!

That is all the news for now...hope I haven't overwhelmed you :P

Insurance Update

It looks as though the insurance nightmare has been resolved. After many phone calls back and forth with ADP, Siebel, Medicare, Social Security, my social worker at Stanford, etc...it seems as though Siebel has taken charge and resolved the situation. I guess it is indeed true that once an individual becomes eligible for Medicare, COBRA coverage gets terminated per federal policy. Because Siebel is such a large corporation and they're self-insured however, they are able to make exceptions to this rule. They're being exeptionally generous as always and are making an exception for me and reinstating my COBRA even though they technically don't have to. Blue Cross was notified this morning that my benefits should be reinstated and everything should be back to normal, although I was told it might take a few days for it to show up on their system. They're also trying to see about me going back to work part-time. Considering everything they have done for me that's the least I can do, I'm truly lucky to have such a generous employer, I can't say enough good things about them.

Tomorrow I'm scheduled to have chemo again, pending lab results of course. I'm also supposed to have a routine chest x-ray (to make sure nothing funny is going on) and I will be meeting with my BMT doctor. This means I will have to sneak a couple of water bottles in my sweats to increase the number on the scale, otherwise I will never hear the end of it (my BMT doctor is the one that gets on my case about my weight).

Insurance Nightmare

I'm not kidding when I say "nightmare," I've literally had some sleepness nights. This whole health insurance thing has become a bigger/scarier problem than I ever imagined. Nobody seems to know why/how this happened and if it will be resolved without legal involvement. As of today I still have no medical coverage and I continue to receive incredibly enormous bills from Stanford. I'm not able to fill any prescriptions so I've actually stopped taking a lot of my medicines and I'm saving them in case I really need them in the near future. I know my doctor's would probably pass out if they knew, but I'd rather be safe than sorry.

The main problem is that I've now been disabled for more than two years through Social Security Disability, which made me eligible for Medicare. Once you become eligible for Medicare, your COBRA gets terminated. The thing is that I was never informed of this and COBRA terminated my coverage without any notice. Usually when your COBRA ends you have 63 days to get onto a new health plan without a lapse of coverage (in my case this is crucial due to my pre-existing condition). COBRA notified me that my benefits had been terminated after those 63 days so I didn't even have an opportunity to find some other sort of health plan. If they're not able to fix this, I'm going to have to seek legal advice because what they did is obviously wrong/illegal. Once that gets squared away I will either have to go on Chris' health benefits and/or start working again.

A Day Off From Stanford

Today I was supposed to go back to Stanford for another round of blood tests to see if I would need more potassium. I decided to call my nurse practioner in the morning to see if maybe I wouldn't have to go and after reviewing my test results from Friday she agreed that I didn't need to go in. As long as I continue to take my potassium and magnessium supplements orally I should be fine. She also asked how my stomach was doing and I told her I had pretty much recovered. I'm back to eating normal again and although I continue to have diarrhea from all the laxatives I take, it's nothing like it was before. She was relieved to hear that, because she said if things hadn't gotten better she was going to have me consult with my BMT doctor in regards to testing for possible "gut" GVHD. Just like the episode I had on my skin and mouth a few months back, they thought it might be possible that I had gotten it in my "gut" this time. I'm glad I didn't have to go through the tests, since they involve doing a colonoscopy and endoscopy, which I prefer not to go through.

As far as my health insurance, things have not been resolved yet. I'm now starting to get bills from Stanford for procedures I had done a few weeks ago for thousands of dollars. This does not surprise me and I know they will continue to come until this all gets settled.

I hope you all like my new Snoopy background...Chris has been working on it for a few days now!

Normal Potassium

I went to Stanford this afternoon anticipating to be there for a few hours getting more potassium and magnessium through IV. In fact, the nurse that I got today thought it would be a good idea to start infusing a bag of potassium prior to even getting my lab results to get a head start (each bag takes an hour to infuse and the lab results take at least an hour to get back). Just as I was finishing the first bag, the results came in and my potassium was normal...hurray! So it was a very short day today, I was only there about two hours total!! I do still have to go back on Monday to check my levels again.

Chemo And Plenty Of Electrolytes

I spent approximately 9 hours at Stanford today believe it or not. It all started with an appointment this morning with the infectious disease specialist. All the tests I've been having have come back negative and since I've started to feel better he concluded that most likely whatever I caught in Mexico is mostly out of my system. He is being precautious though and ordering a couple of more tests to rule out any rare parasites/bugs that could still be in my system. Unfortunately that means getting a stool sample to them within an hour of collecting which is never fun.

After the specialist I had my labs drawn. Most of my counts were good except for my potassium and magnessium, which were VERY low. I guess all the diarrhea I've been having has drained all my electrolytes. I had to get 4 hours worth of replacements through IV. Fortunately I was finally able to get my chemo. It was a very long and boring day, Chris was nice enough to bring me some magazines during his lunch hour so I wouldn't be too bored. Because my doctor is concerned about my potassium, I'm scheduled to go back on Friday and Monday to re-check my levels.

One major issue that is causing me major stress right now is my health care coverage. When I got back from Mexico I received a letter stating that my COBRA coverage had been terminated effective June 30th. Of course I freaked out and contacted my health care provider, employer, and everyone else I could think of. It turns out that I became eligible for Medicare a few months back which automatically makes me ineligible for COBRA (of course nobody told me this). At the time I declined Medicare because I had COBRA and didn't want to lose it. Now I don't have Medicare and COBRA says I've been terminated. I'm hoping to get this all cleared up since I can't afford to not have medical coverage. I guess in the worst case scenario I would either have to go on Chris' insurance as a domestic partner or get a job that will give me medical benefits.

Chemo Delayed Again

Today I went into Stanford to get my chemo which was delayed from last week, however once again I was not able to get it. After I explained to my doctor that my stomach was still upset and that I hadn't gotten any better she decided I needed to do some additional tests and wants me to see an infectious disease specialist first. They want to make sure that I don't have any type of parasites or some infection/bacteria in my system prior to doing chemo.

I have been able to eat a little more the last two days, but I still feel awful after eating and I'm constantly having to run to the restroom. This whole stomach problem has caused me to lose more weight, today I was down to 31.6kg (69.2lbs), which is definitely my all time low. I'm really glad I haven't seen my BMT doctor, because if he knew how much I weigh I would get the scolding of my life (he's always getting on my case about my weight).

So the plan for now is to for me to get a stool sample to Stanford tomorrow, see the infectious disease specialist on Wednesday morning, and then see my doctor again on Wednesday afternoon. If all goes well they will try to give me chemo Wednesday afternoon.

Upset Stomach

Chris and I got back from Mexico Saturday night. We had a good trip aside from the elevation sickness and stomach issues. Just when we both started to feel better from the elevation, we got sick to our stomach. We spent a good part of our trip running to restrooms, I especially feel like I got to know every bathroom in Mexico City. When we got back I still wasn't feeling well and by yesterday (Tuesday) morning I was feeling really awful so I went into Stanford. It was a day filled with tests and getting hydration. They still haven't determined what I have, but it's likely that I picked up some type of E.Coli bacteria/infection that's not common here and that many people get when traveling out of the country. It's been a week since I've been able to have a regular meal and I seem to be getting weaker by the day. Today I went back to Stanford to see if I could get my routine chemo, however they decided against it since I'm still not feeling well. For now I'm on antibiotics, I've been instructed to drink lot's of fluids, and I'm staying close to the bathroom. I'm scheduled to go back on Monday to get chemo.

Prior to leaving for Mexico I was very anemic and I had to get two units of blood. I was really worried about my counts this time, however they appeared to be normal. My doctor thinks that it could be attributed to being dehydrated (it makes your hemoglobin/red count higher), so we will wait and see what they're like on Monday.

My friend Abby and I had our Labor Day BBQ fundraiser on Sunday. It turned out to be fun and successful. Thank you to all who came out and joined us!

Today was our recommitment deadline for the Nike marathon. Unfortunately, Chris and I decided not to recommit this season due to my injuries. We're hoping instead to be able to continue training and shoot for the Walt Disney Wolrd marathon in January.