Wednesday, December 31, 2008

I just wanted to wish everyone a very safe and very Happy New Year!

If you make just one resolution this year, please register with the NMDP if you haven't already. Order a kit and potentially save a life. Registering only takes a few minutes and it only involves swabbing the inside of your cheek. No needles, no pain. There are so many people waiting for a bone marrow transplant and you could potentially be the one to save a life. Imagine getting to be someone's superhero and all you had to do was exist.

Susan wrote a really great article and blog post about the need. You should check it out.

I'll probably be asleep before 11pm, so raise a glass for me! :)

Tuesday, December 30, 2008

Yesterday, I had the house to myself for the better part of the day. Dixie was at work and Chris was running errands. The cats were milling around pretending not to be interested in anything outside their little spheres of being.

I managed to sit still for all of an hour before testing my knees and venturing out into the rest of the house. There are days when I've had a bad night with the knees that it feels like bone grinding on bone while walking. There have been a few occasions when I've had to prop myself up on counters just to do something so mundane as brushing my teeth.

I installed myself on the couch with some knitting and stayed put until everyone got home. It drove me crazy to have to sit still with my legs stretched out in front of me. Since we've returned to Dixie's I've been more active. I'm relearning the limits of my ability and learning when I need to rest and when I need to push myself. The learning curve isn't steep, but it can be frustrating.

Last night I managed to sleep through the night with no knee/ankle problems. Today, I feel like a whole person. I'm sure I'll over do it and pay for it tomorrow, but right now it just feels nice to be doing something.

Monday, December 29, 2008

Sorry for the lack in posting, but the internet connection has been very intermittent. Chris joked that it was like living in the 80's again. Sad to say, but I discovered that I'm addicted to the connection.

Things have remained relatively quiet save for one recurring problem. I haven't mentioned it before, but after my last visit with the GvHD specialist, I developed some serious pain in my knees. I awoke the night after the visit in agony with a throbbing ache in my right knee. It felt like I had hyper-extended it, then whacked it with a mallet for good measure. The knee was swollen with a small bruise on it. Chris applied ice to it and after a few hours I was able to sleep again in relative comfort.

Each night after, I would wake up around the same time to the same pain, except now it had hold of both knees. It resolved a few days after we got back to Baton Rouge and my doctor is aware of it. I've been able to sleep through the night with no problems for the last three nights. Last night, not so much. My knees are currently still bothering me, so Chris has ordered that I stay in bed and not move around. Easier said than done.

My doctor told me to head to the ER if the pain becomes unbearable. If I can live with it, she'll take a look at it on the fifth when I go in for a check up. I'll just wait. Until then, I'm trying not to think of what it could be or might be. It is what it is and no amount of fretting on my part is going to change anything.

Sunday, December 21, 2008

Back Home

This is a very short update as we are both dog tired and have lots of unpacking to do. We made it back to Baton Rouge last night and couldn’t be happier to be here. No doctor's appointments until the first part of January, when we will be returning to MDA for a check-up. No thinking about that for the moment.

Right now we are figuring out where to put all our stuff and planning a Christmas dinner.

Friday, December 19, 2008

I forgot to say a very big heartfelt thank you to everyone who follows our blog. Thank you for the comments and encouragement. We'll never be able to express how much it means to us and how reassuring it is to know we're not alone in all of this.
NO BLASTS TODAY!

Dr. Kebriaei's nurse, Cathy, is an absolute gem and got us a copy of my labs early so we didn't have to wait in agonizing suspense. I must have scanned the pages a hundred times looking for the dreaded words "blasts present". Nothing. Thank you, God.

My WBC count and ANC is still high, but it's down from Wednesday. My lymphocytes have doubled from the last time, which is also a relief. The other counts are holding steady and my liver enzymes are mostly normal. As an added bonus, my magnesium is normal.

We don't have a definitive reason for Wednesday's numbers. Dr. Kebriaei is leaning toward the theory that it has something to do with the steroids that I'm on. She also looked back at my records and noted that my WBC count has been as high as 20 for no explicable reason. I'm just a freak of nature.

I've dodged the proverbial bullet today and can guarantee that I'll be walking around in a fog for the next month or so. I'm so relieved that I can't function which is bad news for me, since Dr. Kebriaei told us to leave Houston. She told us to get out of town and go home. This definitely caught us by surprise and since I was resigned to staying here through the new year, I made Chris go grocery shopping. There's enough food for the next two weeks. One day I'll learn the rhythm of this game and arrange my juju accordingly.
Two years ago today the first outward symptom of my cancer to make me sit up and take notice appeared. It was a small swollen lymph node on my neck just behind my right ear. Why this one little "thing" was what made me call the doctor, I'll never know. For weeks leading up to this event I was suffering from severe fatigue, migraines, a swollen stomach, poor appetite, and diarrhea. I managed to explain all of these things away with excuses like working forty plus hours a week in addition to carrying a full time load at school. I had projects galore to finish and was in the midst of finals. I worked in the retail world and we were ensconced in the holidays. It meant for a lot of pressure. Add to all of this that Chris and I were caring for a pet with terminal cancer who we were not ready to let go.

Wednesday, when I got my CBC results I was speechless. What Chris didn't mention in the last post is that my doctor put forward the possibility that I was relapsing. She was very somber and said that she was sorry. Me too.

I'm having a hard time believing that I managed to survive two very difficult transplants only to have my original cancer come back. Let me be very clear that as of this moment we don't know for a fact that the ALL is back, but as my doctor said, my subtype is very aggressive and comes back very quickly. We may know today, or we may not.

I've been feeling very angry over the last two days. I have absolutely no control over this situation and having to stand by and watch people that I love suffer through this with me is tearing my heart out. To add insult to injury, I feel really well. I'm not manifesting any outward symptoms of illness. My appetite is good and my energy levels are normal. Inside, I know something's brewing in my chemistry. My white blood cell count is rocketing, as is my absolute neutrophil count. Then there's the mystery of the blasts circulating in my blood. I want off of this ride, but that's not possible.

I took a moment the other day to think about all of the treatment that I've had in the last two years and realized that there have only been four months that I haven't had active chemo. That's a lot of chemicals saturating my organs, which makes me wonder if I'm a candidate for any more. If I have relapsed, I don't know what my options are. I'm only 105 days out from my last transplant which leads me to believe that there isn't a lot left open to me. There is only so much the body can take before it starts to shut down and to be frank, if my cancer is back after only 100 days who's to say it won't come back again more vicious a week after the next treatment.

I have labs at 11:30am today and then a follow up with Dr. Kebriaei at 1:30pm. I know anything can happen and that it's only been two days since my last labs. My numbers will either be close to what they were on Wednesday, or significantly higher. If the past is any indicator and I am relapsing, then the blasts will have increased ten fold. I have a microscopic granule of hope that I'm just being dramatic and this is all really nothing, but I'm faced with the reality that there's a reason that I don't know a lot of ALL, t(4;11) survivors who were diagnosed as adults. Truth be known, I'm the only one that I'm aware of right now.

Wednesday, December 17, 2008

Not So Fast

Here we are at Day +103, and after getting Ann's CVC pulled yesterday we were ready to get our last appointment with our transplant doc out of the way and then hit the road for home. Things don't look like they are going to be that simple his time around. After getting her blood tested this morning the results were definitely not what we were hoping for. Her white count is up to 16.5 K/uL (up from 10.5 a couple of days ago), and there are 2% metamyleocytes and 1% blasts showing.

Anytime the "b" word gets used it's gravely concerning. No less so today.

Dr. Kebriaei asked us to come in Friday and Monday to check Ann's blood. The hope is that this is some sort of reaction. Just to be on the safe side I called the people we rent our apartment from and let them know we would be staying longer. Thankfully they agreed.

I hope we don't have to spend the holidays in Houston. I'm really tried of this place and Ann is getting frustrated. We both just want a normal life again.

Monday, December 15, 2008

Success

I am currently free of my CVC. Yippee!!! No more wiggly little bit of plastic tubing dangling in my heart. No more lumens. No more clamps to dig into my chest. Best of all, tomorrow I'll finally be able to wash that patch of skin. You have no idea how excited I am about that. Please bear in mind I was the child that had to be bathed three or four times a day because I couldn't stand to be dirty.

I'm back on oral anti-fungals today, so my fingers are crossed that my liver enzymes remain stable. I'd hate to be celebrating today only to have to have another catheter put in later this week.

I'm going to lay low for the next two days in anticipation of finally, officially being released to leave Houston Wednesday. Chris and I have started packing and are just waiting for Dr. Kebriaei to sign off on the entire affair.

Friday, December 12, 2008

I awoke sometime after midnight to a severely throbbing knee. Chris was still awake, so he took a look and found that my right knee was swollen. There was also a small bruise that I don't remember getting. I took two pain killers which didn't help. Chris put an ice pack on it and after a few hours the pain was gone.

This morning I had a little stiffness in the joint and there's still a small amount of swelling. Chris called my APN to report the incident and see what we should do. I didn't feel like it was an emergency room situation, but it was a strange enough occurrence that we both thought we should report it. My regular APN was out, but the nurse subbing for her offered to have a look at it if we wanted to come in. Since it no longer hurt I elected to sit tight.

I honestly don't remember bumping into anything, but the bruise had to come from somewhere. We'll keep an eye on it, but I'm hoping it doesn't merit anything more than a footnote.

Thursday, December 11, 2008

Chris and I were the only people who showed up for the discharge class on Tuesday. The APN in charge of teaching the class was very nice, and I'm sure she tailored the class to suit the fact that I'd already been through this once before. I only learned one new thing. You shouldn't smoke marijuana because it's not processed in such a way as to eliminate molds and fungi. You're not supposed to be around anyone who does when you're post transplant for the same reasons. Color me crazy, but I couldn't imagine wanting to jeopardize my transplant that badly. I know there are patients who live a certain lifestyle before being diagnosed and they refuse to give up certain things just because they're being treated for cancer. There isn't a day that goes by that I don't see someone pulling an IV pole behind them while smoking in the designated area in front of MDA. These are all adults who are going to make their own decisions. I'd rather do everything in my control to ensure that I'm around for another half century.

I had labs early this morning, followed by an appointment in the ATC. My liver function tests showed that my enzymes are trending back down toward normal. They're still a little high, but Dr. Kebriaei was very positive about the numbers. The bad news is that we have to stay in Houston for another week. I have to continue IV cancidas through Monday. I'll have labs drawn that morning to see what's going on. The good news is that I'll have my catheter removed the same day. I have the orders for it in hand.

I'll restart an oral anti-fungal on Monday in addition to reducing the amount of tacrolimus I take. The v-fend affects tacro absorption, which is why the team is trying to balance the two. Wednesday, I'll go into clinic to see Dr. Kebriaei to get the lay of the land and possibly finally be discharged. I don't mind being in Houston, but our funds are dwindling and maintaining an apartment in Houston tends to get a little expensive.

With everything going on today, we ended up being an hour late for my appointment with Dr. Alousi. The visit was a follow up to see what was going on with my GvHD. The rash on my face and leg have completely resolved. I have developed a small spot of skin GvH on my lower back which is slowly going away. My joints have responded to the steroids and they're no longer tight or uncomfortable. I know this could all change since I've been tapering steroids for the last month. I'll be on steroids through April of next year according to my taper schedule.

I think that covers just about everything that's happened in the last two days. I don't have anything on the books through the weekend so things should be quiet.

Tuesday, December 9, 2008

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.

Monday, December 8, 2008

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.

Saturday, December 6, 2008

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.

Thursday, December 4, 2008

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. :)

Tuesday, December 2, 2008

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.

Monday, December 1, 2008

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.