Oh Bother...

Short update this morning. I got a call from my employer this morning and I've been laid off. The projects that were on the books prior to Ann's relapse have all been shelved with the deterioration in oil prices. Not sure what this will mean to our future yet, but I've already started looking on Monster.com.

I think we are done with the south for good. Time to look to the west or east coast.

Sorry this had to be bad news.

Update

I have to continue on IV cancidas through Thursday. Dr. Kebriaei will re-evaluate me then pending my liver function tests. If I'm not able to safely tolerate voriconazole orally, then I'll have to be on IV cancidas for as long as I take Prograf (immunosuppressive). Since I'm taking 7mg of Prograf daily--the most I've ever been on, then the catheter in my chest will remain indefinitely. I'm starting to suspect that I'm either supposed to be learning a lesson in patience or trust.

%#$&

I had a CBC this morning and I will admit that I thought the results would be a forgone conclusion. I'd resigned myself to thinking that my magnesium levels would be low, yet again. They weren't. Well, technically, they were lower than they should be, but my level had gone up over last Thursday's results. My doctor told me if I could maintain 1.5, she'd be happy. It was 1.6 and I have to believe that the vitamin C that I've been taking had something to do with it.

Now the bad news. My liver enzymes have started going up again. One of the three that gets checked tripled over the weekend. That's bad news for me, since my team was hoping to take me off of the IV anti-fungal in order to restart the oral anti-fungal that started the whole shebang. Chris let my APN know that I'd started taking vitamin C and she said to stop. I did a google search involving vitamin C and liver enzymes. There are actually studies available on the subject and it would appear that vitamin C does impact liver enzyme levels. Who knew?

I'm in a holding pattern until my transplant doctor makes a decision on the matter. I should know something later today. I know that I can still be released to go home even if Dr. Kebriaei decides to continue me on IV cancidas. I'd get it delivered to the house in Denham and just do what we've been doing for the last month. My frustration stems from having to keep my catheter if that happens to be the case.

By no means is the catheter a hardship. It makes having blood drawn and getting infusions really easy. Unfortunately, catheters tend to be very susceptible to infections. I've been very lucky in the last two years and haven't had a problem. My frustration comes from the little daily rituals associated with having a catheter. All the lumens have to be flushed with blood thinners on a daily basis and if I have to have an infusion, they have to be flushed with saline in addition to heparin.

When I want to take a shower, I have to make a patch to cover the catheter. It's like wrapping meat. I have to tape cling wrap over my chest and hope that I've created a good enough seal to keep water out. You never know how well you did until after you take the patch off and check for moisture. I have permanent red marks on my chest from the tape that's used to hold the plastic to my skin.

There are weekly bandage changes to contend with. Chris has to clean and sterilize the catheter once a week. It usually takes half an hour and there's a small amount of discomfort associated with swabbing the stitches and insertion site. The catheter site also tends to get itchy and I can't scratch it.

The lumens hang down really low thanks to the new caps MDA is using. The tube clamps are also a bit on the large side and dig into my chest when I sleep, since I'm a side/stomach sleeper. It's just a lot of small things that are starting to add up. I have a catheter scar on each upper arm and on the left side of my chest. When my current catheter comes out, I'll have a fourth scar. At least I'll be somewhat symmetrical.

When I step back and look at the big picture, I know I'm very lucky. I've had minimal problems, PTLD and relapse aside. I'll post more as soon as I know what the game plan will be going forward.

I only had one appointment yesterday and it was late in the afternoon, so it was hard to get motivated and moving. It was for complete pulmonary testing and if you've never done it, you don't know what you're missing. You get to sit in a sealed booth and run through a series of breathing exercises. My favorite is the one where you have to pant into a tube then expel all of the air in your lungs. I find it to be a very unnatural action, but I've had so many CPT's that I can do it like a pro. I finished the complete series in under fifteen minutes. The tech told me I was a pro. This may be my new calling in life. If only I could find someone to pay me to breathe.

I passed with flying colors, so that's one more positive tick on the discharge checklist.

I have to go in for a blood draw on Monday. The plan is for my transplant APN to call me as soon as the test results are in to let me know what the plan for the rest of the week will be. Not surprisingly, my magnesium levels will dictate what happens. I haven't had a magnesium infusion since Thursday, so I'm a little on edge about it. I've done some research and found that vitamin C is supposed to help with magnesium absorption.

Chris picked up some chewable vitamins yesterday and I've been dutifully consuming them. Sadly, they aren't anything like the Flintstone's chewables of my childhood. They taste like sickly sweet orange juice squeezed from evil oranges. Oranges that have gone over to the dark side and are reaping revenge for their citrus bretheren. I can't stop myself from making crazy faces every time I eat one. Chris tried one and pronounced it disgusting. About five minutes later he ate two more. I didn't even have to dare him.

We had another long day at clinic today, mostly spent waiting to see my doctor. I didn't get cut loose due to...low magnesium. It actually went down a little, again. I've been advised to bump my consumption up to 12,000 milligrams a day. Hello imodium. My doctor also speculated that I might just be one of those people who needs to absorb the mineral through food. I've been eating cashews on a daily basis to help bump up my levels, but now I'll have to plan menus around foods that are high in magnesium. Unfortunately, these are usually foods that bring out the picky eater in Chris. Rather, I should say that the foods that appeal to me definitely do not appeal to Chris. Think dark, leafy greens like spinach and collard greens. I'll just have to eat the lion's share on my own.

The good news is that the list of foods is pretty extensive, so we'll figure it out.

My doctor is anticipating letting me go late next week. She also mentioned taking my catheter out after we get everything in order. I'm all for that. Since we were planning on staying through next week I'm not disheartened about the delay. At least I'm still here planning ways to cause trouble for the world at large. :)

The discharge nurse called me today to inform me that Chris and I have to take a discharge/departure class before we can go. I find that ironic considering I've already had one transplant and managed to survive on the outside for a year before relapsing. Apparently it's a new requirement. I imagine it's like having to go to traffic school.

We're scheduled for next Tuesday morning. I'll do my best not to be a problem student.

I had a bone marrow aspiration/biopsy this morning and all went well. The preliminary results just came in and the most important thing is that I'm only showing 2% blasts. Normal is between 0%-5%. Woohoo! There are other tests pending that won't be in for a few weeks. Now we just sit and wait.

My APN let me know that I'm tentatively scheduled to be released from the ATC on Thursday. They surprised me when they cut me loose with the last transplant. I remember tearing out of the ATC to pack up the apartment and escape from MDA. This time around we're going to take a little more time. I have a complete pulmonary function test scheduled for Friday and an appointment in the GvHD clinic the following Thursday. I'm really hoping that an appointment to have my catheter removed magically appears on my schedule between now and then. It's not that I mind getting IV meds and let's face it, if you have to have them, not getting stuck in the arm is the way to go, but I'd really like to take a shower without having to place a cling film patch over my chest.

I started tapering my steroids over a week ago and I'm scheduled for another taper this Friday. So far, so good. I haven't had any GvH flares. I've managed to get my snacking under control and kept the weight gain to a minimum. Just two pounds, so far. I thought it would be much worse. So much so, that I dreaded putting on my "skinny" jeans. With much dread I put them on yesterday. I shouldn't have worried--the muffin top was minimal.

The magnesium situation is still a small problem. It went up a little, but not nearly enough. My APN doesn't want me to increase the amount I take because of that annoying little side effect that involves planning my days around the nearest bathroom. We're going to wait and see what the numbers are on Thursday. My fingers and toes are crossed.