Wednesday, December 15, 2010

Making time

I checked the date of when I last blogged and realized how remiss I've been. It seems that the older I get, the less inclined I am to put words down on paper. Fifteen years ago, I would have filled a hundred notebooks with scribbles and thoughts, compelled to share. Now I feel like a hoarder, keeping things to myself.

I am well. Chris is well. The cats are well.

After I took my last final, I gave myself license to give into the steroids and vegetate and let my body slow down. I don't think I left the house for three days and pajamas were my uniform. I did manage to sew a Christmas tree skirt and four stockings for the mantle. I'm not a particularly crafty person, but I couldn't find anything commercially that I liked, and so I elected to make it myself.

Every summer, between the ages of four and six, my mother would try to teach me to sew. She's an expert seamstress and can draw patterns in her sleep. She can also cut without a pattern and turn out something professionally done. Unfortunately, her teaching style was more in the vein of learn through osmosis rather than instruction. What sane person thought a child under six would patiently sit and watch fabric run through a machine while taking notes is beyond me. There were never really any directions and the one time I tried sewing a seam on my own, my tiny finger went under the presser foot and the needle went through my nail and finger. That was the end of it as far as I was concerned. Still, something must have penetrated my resistance to learning.

Final grades posted this morning and with everything going on, I managed to get an A and B. I'm relieved to have it behind me and have started thinking about next semester. I've scheduled three classes, but think that I may cut back to two physical classes and one correspondence class. The last two months of this semester were particularly difficult for me mentally and physically. I know there won't be much of a change in the month I have off before the spring semester starts. I'm still thinking on it.

I had a few follow-up appointments in Houston yesterday and got a few more good reports. The radiologist who reviewed my chest X-ray reported that I had a near complete resolution of obliterates. I saw the X-rays and there were just a few hazy spots where there's still inflammation. They looked great, though. I also had another pulmonary function test. Back in September when the GvHD of the lungs made itself known, I'd failed a PFT. My lungs were functioning at 59%. The PFT I did following that showed an improvement and I was at 62%. Yesterday showed further improvement and I was at 66%. Baby steps. This could take months to resolve and I have to be patient. The baseline PFT that the pulmonologist is using is from June of this year where my lungs were functioning at 86%. I'll get there. Since I'm tapering oral steroids, I've been started on a steroid inhaler for my lungs.

I also saw my dermatologist who specializes in GvHD of the skin. She found a spot of GvHD in my mouth and told me that she could see where I was starting to develop GvHD on the sides of my abdomen. It's still very faint. There's also a spot starting on the side of the bridge of my nose. She also told me that my skin was perfect as far as she was concerned and coming from a doctor of that caliber, I couldn't be more pleased.

The resident who was training with my dermatologist took some extra time with me to go over my medications and my lifestyle. She took the time to talk to me about the link between taking tacrolimus for an extended period of time and skin cancer. I already knew about this. I wear sunscreen and stay out of the sun as much as I can. Tacro can also lead to lymphoma. Trust me, I've done my homework. I'm not going to worry about secondary cancers. I'll worry about doing what I can to stay healthy.

As a further bonus, my dermatologist has released me and I only have to see her on an as needed basis. We're moving in the right direction. I'll see the pulmonary specialist in three months and have all of the tests repeated. There may also be a CT scan for good measure.

There you have it. No words of wisdom, but an update none the less.

Added bonus: Me at 11 weeks on steroids

Tuesday, December 14, 2010

Haiku for Akiko

  • Green frog,
  • Is your body also
  • freshly painted?
  • Sick and feverish
  • Glimpse of cherry blossoms
  • Still shivering.

    NOM NOM NOM NOM NOM!!!!

Thursday, December 2, 2010

Putting down words

The last month has been a handful for me to handle in terms of sheer activity. There have been class projects and papers and presentations that have been taking up a lot of my time. My nephew was born on Veteran's day. I've been in a doctor's office every two weeks since September, either locally or in Houston.



I finally got to meet an old friend's wife, Mara, while they were down in New Orleans for Thanksgiving. She is as lovely and gracious and fun in person as I knew she would be and possesses the rare talent of putting people at ease with her laugh and a smile. I only wish they lived closer so we could all see more of each other on a regular basis.



And then there's the matter of the steroid taper. Today marks nine weeks of taking methylprednisilone. I started out on a dose of 64 mg daily. When you first start taking this medication, you feel awful. You're jittery and your heart races. You can't sleep and all you want to do is zip around the room while stuffing your face with anything that isn't moving. Then, for one blissful moment, the symptoms causing you to be on steroids resolve and the side effects take a backseat to the sheer relief of being able to breathe.



You don't get very much time to enjoy the moment. Your taper starts as soon as you stabilize in order to minimize the very real damage steroids can do to your system. You're doctor is trying to prevent a host of boogie men from taking up residence in your body. You'd think shunting the steroids from your system would be a good thing, and it is, but you feel horrible while it's happening.



I have felt less than well for the last month. It's not the same as being sick with the flu or on the verge of a cold. It's more a feeling of pervasive tiredness and the inability to get motivated. I'm suffering from muscle weakness and shake constantly as a result. I can't stand for long periods without leaning on something for support. If I forget myself and sit on the floor out of reach of a prop with which I can pull myself up, I'm stuck like a one-legged turtle flipped on its back. I have a hard time with stair risers and it takes me longer than it should to get in and out of a car. I can only imagine how bad it would have been had I not been exercising. It is getting better.



I've had a hard time keeping up with the blog with everything going on. There have been many half-hearted attempts at putting down words that have been discarded in the face of everything. I haven't abandoned them completely and I'll flesh out a few for future posts.



I was in Houston yesterday to see my transplant specialist. She took one look at me, touched my face and apologized for what steroids had done to my appearance. This made me smile because she's just one of those special individuals who should be a doctor and is a credit to her profession. Until we spoke yesterday, I hadn't realized that I was in a very small percentage of people who happen to be extremely sensitive to steroids. I've known from previous treatment that I react quickly to the drugs, but didn't realize that my reaction was so extreme.



When Dr. K. saw how swollen my face, neck, and shoulders are, she decided that I needed to be on an accelerated taper. I'll start taking 48 mg every other day for a week, then 32 mg every other day for a week. I'll see her again following that with the plan being to get me down to 16 mg every other day for a week. She'll slow the taper down from there and speculated that I'll be placed on inhaled steroids for my lungs. I'll also be seeing the GvHD lung specialist the same day and having a complete pulmonary workup as well as more xrays.



If history repeats itself, it will be a little over six months before I lose all of the swelling in my features and around my midsection once steroids stop. I'll be relieved once I stop feeling like my skin's about to burst open from all of the pressure. It's that uncomfortable.



As for my blood work, it was mostly normal. I've managed to lose the report, but here are the numbers from memory:



WBC: 8.7 normal



RBC: 3.87 low, but on the cusp of normal



Hemoglobin: 12.7 normal



Platelets: 142 low end of normal



ANC: 6.66 normal



Alanine aminotransferase: 44 normal



Aspartate aminotransferase: 21 normal



LDH: 1163 really, really high



Two of my liver enzymes are perfect and that's what we've been aiming for. My LDH continues to trend in the wrong direction and so Dr. K. had me go in for a little more blood work to test my Epstein-Barre virus titers. EBV is the nasty little bug that causes mono and most adults carry it. It's also what leads to PTLD(pre-lymphoma) in patients with suppressed immune systems. I've already been treated for PTLD once and it was enough. I'd rather not do the riddled with tumors thing again. If my titers are high, I suspect that there will be an increase in the amount of valtrex I take in the hopes of heading off trouble. If it's not EBV, then I don't know what the next step will be. I'll know more in two weeks once the test results come back.



I have finals next week, so this will likely be the only post from me this week. Chris has a video he took over the weekend that he was supposed to post. You know what to do if you want to see it.



This is a picture at eight weeks on steroids

Wednesday, November 24, 2010

Bascom


I can't remember if I mentioned this, but a few months ago, my father in law entered one of his hand carved rocking horses into a national art competition sponsored by PBS. Out of the thousands of entries, he won fourth place. I've had the pleasure of seeing his pieces in person and they are amazing and so beautifully crafted. The child that recieves one of these heirloom pieces is truly lucky. Bob also handmakes cradles in addition to rocking horses. If you're interested in more information about purchasing his work, leave a comment and I'll put you in touch.


Tuesday, November 16, 2010

Steroids, Week 6





I've almost reached the six week mark on steroids, and so I thought I'd post a picture. The puffiness is much worse in person, and much more evident in profile. I am not exaggerating. If you've been on high-dose steroids for any length of time, you know exactly what I'm talking about.

I also saw my local oncologist today. He pronounced me normal and questioned one of the drugs that I'm on. It's the anti-fungal that I take as a prophylaxis because of the steroids. I'll continue on it until I stop the steroids.

As for my blood-work, here it is:
My numbers followed by the normal ranges:

WBC: 13.1 k/ul (4.5-10.8)

RBC: 4.32 M/UL (4.2-5.4)

Hemoglobin: 14.1 g/dl (12-16)

Platelets: 171 k/ul (150-350)

ALC: 2.0 k/ul (1.3-2.9)

ANC: 10.1 k/ul (1.5-10.0)

Bilirubin: 0.4 mg/dL (0.2-1.0)

Alk phos: 35 iu/L (32-92)

AST/SGOT 18 iu/L (10-42)

ALT/SGPT 49 iu/L (10-40)

Magnesium: 1.6 mg/dL (1.7-2.8)

My numbers continue to trend in the right direction. I can't tell you how pleased I am that my white blood-cells, platelets, and absolute neutrophil count are trending down. My magnesium is low, but it's at an acceptable level for my transplant doctor and the entire reason for today's local visit. It was far too low two weeks ago thanks to the elevated levels of tacrolimus in my system. Low magnesium can cause serious heart problems for transplant patients, not to mention the debilitating leg cramps that come part and parcel with the deal.

As a side note, I'm still waking every hour or so with leg and foot cramps which is really wrecking my days. I've decided to go up on my magnesium dosage to compensate and see if any thing comes of it. I'll let my transplant doctor know when I see her next. Of course, I know that the muscle cramps can also be a side effect of steroids and since I'm also having problems with cramps in my hands, I know that low magnesium may not be the sole culprit.

My liver function is almost perfectly normal. Can you see me smiling from here? Dr. B.'s equipment isn't as sensitive as the cell counter at MDA, but the scale of normal versus today's numbers is so negligible, I'm going to give it a pass. It's close enough and I'll take it.

I still have a problem with tremors. It's not as pronounced as it was two weeks ago, but it's still fairly obvious. A look at my class notes would out me. They're just legible.

Overall, I'm really pleased. If my numbers can remain stable and Dana's immune system continues to settle in, I should be able to continue the steroid taper. By my estimate, if I continue to taper every two weeks, then I should only have another ten weeks left. It usually takes my appearance six or seven months to lose the Cushing's fullness that I always develop to the extreme. I'll be patient.

Saturday, November 13, 2010

Over the last week, the cumulative effects of steroids have made themselves apparent. I've reached that unique point where the effects of the steroid taper are clashing with the last five weeks of my adrenal glands becoming dependant on methylprednisolone. It's not pretty.

I feel like that zebra at the back of the herd being stalked by a pride of lazy lions. You know the one. She's got a peg leg, eye patch, and slight case of mange. She's the one desperately trying to run into the middle of the herd so one of the more sickly specimens gets caught, except she's pretty close to the sickliest zebra in the bunch. That's how I feel.

My skin is stretched tight from fluid retention, so much so that my neck has rings much like the Michelin man. I've managed to stave off major weight gain by hitting the treadmill five days a week for extended sessions and to date have only gained two pounds. Regardless, none of my pants fit because my midsection is swollen from steroids. Muffin top reigns supreme.

The muscles in my legs are a bit withered. I can no longer get up from a squatting position without pushing off of, or pulling up onto something. I dread dropping things because I'm never certain whether I'll be able to pick them up. My arms are noticeably weaker and I can't carry as much. I'm having trouble getting out of cars. It takes me a bit longer to walk to class and I pity the drivers who have to wait on me to cross the street. Even at a hustle, I'm slower than the slowest crosser. I've been using my disabled parking pass more when I run errands.

Yesterday, I asked Chris to accompany me to the grocery store because I didn't want to do it by myself. Normally, I love grocery shopping alone. Yesterday, I dreaded having to load all of it into my car. It's not that I can't do it. It's the fact that it's taking me twice as long. I'm also starting to feel a little more aware of my appearance. I'm not embarrassed that my face is a bit distorted, or feeling otherwise vain in that regard. I'm more aware of the side-ways glances and people quickly looking away when I catch their eye. It makes me feel obvious.

I know many of my transplant friends can relate since we've all done the steroid dance a few times. What I'm feeling isn't new, but I am ready for it to be over. My next steroid taper occurs on 11/17 when I start taking 64mg of methylprednisolone every other day. I'll see my transplant doctor the first week of December and she'll decide on the next step. I'm hopeful that the GvHD remains in check and I'm able to taper once again.

Thursday, November 11, 2010

Unbelievable happiness

My brother and his beautiful wife welcomed their first child into the world today. I cannot believe how unbearably happy this makes me and I can only imagine what John and Mandie are feeling today.

Welcome to the world, Kai.





Monday, November 8, 2010

Halloween

It's Ann. I'm logged in on Chris's computer. Here is the video Chris shot of our Halloween set up. There's a point where I think he's taking a picture of me and so I have a big plastic smile.

Also, here's a picture of me between four and five weeks on steroids. My cheeks look like they're trying to eat my features.

* Still getting used to imovie


Technical Difficulties

Thursday, November 4, 2010

Liver & Lungs

It is the day after MD Anderson and I could use a little more sleep.

To get the numbers out of the way:

WBC: 16.6
RBC: 4.39
Hemoglobin: 14.1
Platelets: 131
ANC: 12.12
Alkaline Phosphatase: 75
Alanine Aminotransferase: 63
LDH: 1119

The only normal numbers in the bunch include: red blood cells, hemoglobin, and alkaline phosphatase (liver enzyme). My platelets are plummeting, and everything else is high--mostly due to steroids. My liver enzymes are trending in the right direction. So much so that my transplant doctor surprised me yesterday by having my PICC line pulled. It was an ecstatic moment.

I saw the infectious disease specialist, AKA the fungus expert, and he discharged me from his care. My lung issues had nothing to do with fungus, but the culture did grow para-influenza. I was on so many antibiotics that it was covered and essentially treated.

Next up was the pulmonary specialist who showed me my chest x-rays from the last three visits. It was like night and day. When I was first diagnosed with decreased lung function, the x-ray showed both lungs filled with infiltrates. It looked like someone had dumped a box of cotton swabs into each lung to the point that the lower lobes were nearly opaque. Yesterday's x-ray showed some infiltrates still present, but you could tell you were looking at lungs. I've been told that it could take months before my breathing is normal. I still get slightly breathless when I exert myself, but it's nothing compared to what it was a month ago.

I have to return in December to have more scans and do another complete pulmonary function test.

My transplant doctor is pleased with how I'm reacting to the steroids and has started me on another taper. If all goes well, I can taper again in two weeks. She had concerns about my tacrolimus levels, though. She likes for them to hover around 8 and mine were at 16.9. To put things into context, tacro causes headaches and tremors. I haven't had any headaches, but I shake from head to toe. It's so bad that I have a hard time taking notes in class and yesterday, the phlebotomist had to physically restrain my arm in order to get blood. Dr. K. noticed the shaking right away and immediately throttled back my dose.

My magnesium is also low from the tacrolimus. I have to start taking mega-doses of it to supplement and have my levels checked locally in two weeks. All of the doctors I saw yesterday speculated that the increase in leg cramps interrupting my sleep is a result of low magnesium coupled with steroid side effects.

My brain is starting to shut down and I have a bit of homework to do before class, so I'll have to leave you with this pitiful post. Chris has a Halloween video that he needs to upload. Harass him and it might happen.

Sunday, October 31, 2010

Halloween

I've finally sorted out the reason for my inability to post the weekly pictures of myself on steroids. They keep getting deleted before I've managed to download them to a computer. C'est la vie.

I did manage to hang on to two pictures from the Halloween party we attended last night. My brother's brother-in-law went over the top and turned his house into a spectacular experience. It was so well done, Martha Stewart would have been intimidated. It was also the first Halloween party that we've attended since I was diagnosed with cancer. We had a fantastic time.

Chris went as the evil parallel universe version of himself, hence the goatee.




I went as Alex from A Clockwork Orange.

Thursday, October 28, 2010

Weekly doctor update

I saw my local oncologist yesterday to have blood-work done and my numbers appear to be doing what they should.

For those that are interested:
Numbers in parentheses are the normal range.

WBC: 17.9 K/ul (4.5-10.8)

RBC: 4.30 M/ul (4.20-5.40)

Hemoglobin: 13.4 g/dL (12.0-16.0)

Platelets: 177 K/ul (150-350)

ANC: 14.8 k/ul (1.5-10.0)

ALK PHOS: 47 IU/L (32-92)

AST/SGOT: 29 IU/L (10-42)

ALT/SGPT: 71 IU/L (10-40)

LDH wasn't available when the report was run.

According to Dr. B., that obscene white blood cell count is mostly neutrophils due to steroids. My platelets have also plummeted as a result of steroids, so please avoid approaching me with sharp objects. My liver numbers are down slightly from last week, but not significantly so. I'm pleased overall.

The steroids are starting to manifest their presence in new ways. When I was on the same dose in 2008/2009 I developed severe knee pain. It would wake me at all hours and the simple act of moving my legs was torture. My transplant doctor attributed the problem to muscle weakness. She was right.

Steroids over a period of time rob you of muscle tone, especially in the legs. The only thing you can do is exercise and fight it. I've been doing 60-100 minutes a day, five days a week, on the treadmill in addition to the walking I do on campus. It's been three weeks and I'm starting to feel the loss of tone.

Three days ago, I had a small amount of trouble standing from a squatting position. I was able to do it without having to push off of the ground, but it was an ominous feeling. Two nights ago the knee pain started. It was confined to my right knee and was as hellish as I had remembered. The only thing I can do for relief is to ice it down, and so I did. Thanks to the discomfort, I only managed 3 hours of sleep.

I've also been getting cramps in my hands, feet and lower legs. My thumbs tend to lock in a very unnatural position and all I can do is stretch my hands against solid surfaces until the muscles relax. When it attacks my feet, I have to get up and walk around. It usually happens when I'm sleeping, so I can forget a solid night of sleep for the next few months.

These are all very minor things in the scope of everything. I expected this. I'm doing things to be proactive in the hopes of limiting the damage. I feel well. I've managed to only put on 2 pounds instead of the 20 plus that settled around my middle the last go around. Most importantly, I'm happy that I'm not letting this limit me.


Wednesday, October 27, 2010

Getting Ready For Halloween

Thank you

I want to thank everyone for the birthday love. I managed to accomplish everything that I set out to do and was pleasantly surprised by a dinner date with Chris. Since my CSA meeting was at 6:30, he made a reservation for Galatoire's Bistro at 8. So that we could make it in time, he even came with me to my meeting and patiently sat through the minutiae dressed in a suit and bow tie. It was pretty adorable.

All of your birthday wishes mean the world to me and I'm so happy to be able to connect with you all. Thank you.

Monday, October 25, 2010

Forgetting

Chris and I have spent the last four years dealing with crisis after crisis. There is a certain rhythm that you fall into; an alarm always primed to go off.

And then you start to forget.

When treatment is your constant companion, you become accustomed to a certain way of life. I had a PICC line installed in my right arm a few weeks ago. It is my third or fourth. I can't honestly remember how many I've had put in. It hangs about two inches off the side of my arm with the insertion point covered by gauze and tegaderm. The sight of it is not alarming to me, because I'm used to seeing them. In me and other people. I don't think twice about it.

Because the access point of the catheter literally dangles from my bicep, I wear a burn sleeve to keep it out of the way. The sleeve is a white tube of elastic mesh that keeps the mechanism under control. Because I live in the eternal swamp of the South, I also tend to favor wearing short-sleeved shirts, which do little to hide the burn sleeve and the strange blue bump underneath. Because I forget.

People stare and I can see many wondering. It's especially obvious in class. I wonder if I should make an announcement explaining the gadget, or dismiss the looks as my own paranoia.

I've forgotten how the steroids and increased tacrolimus make me shake and vibrate. Both hands have an obvious tremor that I don't try to hide. It would be useless.

I'm amazed at how much I've forgotten in the last four years. Moments that I was sure would stay with me are gone until I am reminded by Chris or a question from a friend. Forgetting isn't something that I strive for. It has simply happened.

Those teary, frightening moments of absolute resolve have been replaced by something I think most cancer patients strive for. Normalcy. Those once irritating, idiosyncratic moments of repetition have become a respite for me. I no longer mind doing those things that once seemed like moments lost, never to be recaptured. Standing in line at the post office for 20 minutes? Bring it on. 30 minutes waiting in line for a prescription? Annoying, but so pleasingly normal.

When you have spent months in the hospital and entire days on end at clinic, you wish for these things. You miss normal.

Why am I writing about this? Chris asked me a question yesterday that brought it all into focus.

"What do you want to do for your birthday?"

Without missing a beat, I ran down Tuesday's schedule: I had a paper to finish, Highway Construction class, and a Construction Student Association meeting that evening. Five years ago, I would have longed to take the day off. I was so pleased to be able to list the activities planned for Tuesday that I might have smiled.

I'm relearning what it's like to be normal and I won't be forgetting the feeling any time soon.

Thursday, October 21, 2010

Houston again

Another long day in Houston resulted in a little good news. The liver biopsy was positive for GvHD. My GvHD biopsies usually come back as inconclusive. I have several keloid scars on my back from previous multiple skin punches testing for this little monster. The lung biopsy was inconclusive. Dr. K. is proceeding as though it's GvHD since my breathing has eased on steroids. She's also keeping me on a few steroids while the lung cultures continue to grow. Who knew that it could take over a month for a fungus to show up in a petri-dish?

As it stands, the plan is to start a steroid taper. I'll alternate 64 mg of medrol with 32 mg every other day. 2 more days of IV cancidas, then I will switch over to voriconazole, which comes as a pill. My PICC line will remain until Dr. K. can be sure that the switch doesn't irritate my liver. The rest of my 2 page med list remains the same.

For those that would like to know, here's my blood work:

WBC: 18.2 K/UL <--------- No worries, that's high due to steroids

RBC: 4.34 M/UL

HGB: 13.9 G/DL

PLT: 203 K/UL <---------- The platelet crash is in full effect. Thanks, Medrol.

ANC: 16.47 K/UL <--------- Medrol

ALC: 0.87 K/UL<------ Last week this was high, now it's low.

AMC: 0.56 K/UL

No eosinophils detected. That's most definitely due to steroids.

Alkaline Phosphatase: 103 IU/L <--------- NORMAL

LDH: 866 IU/L <-------- So close!

Alanine Aminotransferase: 88 IU/L <------ Suddenly, my liver enzymes are like the little engine that could, but got stuck at customs.

My APN was impressed by my glucose results. 135 mg/dL. She was expecting something over 200 mg/dL due to steroids. Most transplant patients become diabetic for a period. I was last go around. I have been vigilant about the snacking. If I can restrain myself, I limit myself to fruit. I've had more than my share of Halloween candy, though. I like to think that I've managed the collateral damage. The excessive treadmill time may also be helping. I still have my old glucose meter and a box of testing strips, just in case. If I must, I'll start giving myself insulin injections, again.

I've been ordered to see my local oncologist next week for more blood work.

All in all, things are looking good.


Tuesday, October 19, 2010

Quick & Dirty

The steroids are making me feel like a hummingbird high on cocaine, and so it's been difficult for me to sit down to blog.

I saw my local oncologist last Wednesday for some blood-work requested by my transplant doctor in Houston. According to Dr. B.'s cell counter, things look good. Bearing in mind that numbers are relative to the sensitivity and age of the equipment, there has still been an improvement. My liver numbers were down. My platelets are also dropping, which is due to the steroids. Lymphocytes are up, which has Chris worried. Dr. B. reassured him that it's not significant of anything. I recall them being up when I was last on steroids, so I'm not worried.

My lung function is better and I am coughing less. My brain is constantly vibrating and it's nearly impossible for me to stay focused on one thing for long. Sleep is something that I miss. I can generally stay asleep for between 2 and 4 hours, and then I'm wide awake and looking for something to eat. I do not love this aspect of steroids.

This time around, I've decided to try an experiment. As most of you know, long-term steroid use can lead to avascular necrosis and a host of other life-long health issues. I managed to dodge all bullets last time and I am well aware of how lucky I am for it. In transplant patients, the AVN usually attacks the hips. Your bones die. This means constant pain and the need for replacement surgeries. I know AVN sufferers who have it in most all of their joints. It terrifies me.

Steroids also lead to muscle weakness, especially in the legs. Taking these two boogie men into consideration, I've decided to hit the treadmill, hard. Walking helps with bone density and circulation. I do it at the maximum incline to really work my legs. Thus far, I've managed between 60-102 minutes each day. I don't want AVN. I don't know that this will help, but I have to do something.

An added bonus to spending so much time on the treadmill is that it helps to burn off some of the excessive energy. I feel less manic after a long session of mindless walking. I also feel better about the late night queso binges. So far, I've managed to keep my weight stable. Last time on steroids I gained something like 24 pounds. Not this time if I can help it.

The lower part of my face is beginning to fill out thanks to the methylpred. I should look like a crazy Disney character in about 3 weeks. I'll post the picture I took of myself after the first week once I remember where it is.

In other news, Chris and I have been working on Halloween decorations. We made tombstones last weekend, and I must say they came out pretty well. Amazing what you can do with foam insulation, a dremel tool, and some paint. Chris is the architect of this endeavor. I'm supplying the painting instructions and manual labor. It's been a lot of fun, and I'm just so happy to be able to do this with Chris.

Here are a few pictures that I had on my phone. I'm charging Chris with posting the rest of the shots. You all may want to harass him about it to be sure it happens.


I'm thinking of flocking the spiderwebs and leaving them up through January. They were that persnickety to decorate with.

I still marvel at how talented Chris is. He free-handed the design of the tombstones.

Graves at night. There are several finishing touches that will go in the weekend of Halloween. Chris's dad carved gears for him to use in order to make an animatronic ghost. Artistic talent seems to run in the family. The gears are beautiful and it seems a shame that they're going to be hidden inside the mechanism that makes the ghost wave its arms.
A little daylight. Close-ups of the tombstones will be forthcoming. It's only a matter of getting me to sit still long enough to do it.

Sunday, October 10, 2010

When it's not Cancer

Upon first being diagnosed with cancer, my world simply stopped for the barest second and I could feel something shift and click in my mind. Every-day Ann traded places with a woman that I'd never relied on and that part of me that is a survivor emerged. My vision in that moment was so intently trained on my doctor's discomfort at delivering a cancer diagnosis to a perfect stranger only a few years younger than himself. I could hear those traitorous cloned white-blood cells rushing past my ears as my heart exploded with every beat. I had cancer.

I don't have cancer anymore. Haven't since achieving second remission in July 2008. Now I must live my life in that moment after cancer. Knowing that the genetic defect that lead to the first cloned white-blood cell may lurk deep within my bones is cold comfort.

I don't have cancer. I am living with the aftermath of treatment. My new immune system still doesn't like the decor of its new vessel and has decided to do a little redecorating. It's been working on my eyes and skin for some time now. Lucky for me, the drugs I've been using to keep Ann 3.0 under control worked up until a few weeks ago. The immune system has decided that my lungs, liver, eyes, skin, mouth, and fascia have got to go. The only way it can do this is to kill them as it would an infection. It hasn't quite keyed into the fact that we're all one and the same.

My breathing became tricky and my lung capacity reduced to 59%. Walking to class felt like running a mile. My liver became swollen and my abdomen became uncomfortable. All of the other nuisances magnified ten fold.

I have missed a lot of school for medical reasons. I had to see THE SPECIALISTS and have a liver and lung biopsy. Post transplant, when you have to see a specialist, you're going to see a doctor who deals with things they don't usually go over in medical school. I had three weighing in along with my transplant specialist. They all cautiously agreed that I had GvHD.

I'm now taking 64mg of methylprednisolone in addition to tacrolimus to try and pull the immune system back into line. My immune system is back in the toilet. I must now take three antibiotics, and antiviral, and an IV anti-fungal.

I was surprised with the news that a new PICC line would be inserted into my arm on Wednesday in order to be able to facilitate infusions. I had a little break-down after it was inserted. It all had to do with being frustrated. Frustrated that I have a tube sewn into my arm; frustrated that the IV nurse who did the procedure wouldn't write orders for dressing kits or heparin unless Chris took the training class to get re-certified. Chris has given me infusions and changed my dressings from the beginning. He's taken the class three times. He wasn't with me because I was just supposed to be having a check-up. There'd been no mention of a catheter insertion. It all coalesced to overwhelm me and I ended up crying in front of my transplant nurse. I don't cry in front of my doctors and nurses. I do cry when I get mad or frustrated. I hate the fact.

My nurse was great as was a former nurse who tracked me down to give me a hug. Chris and I returned to MD Anderson yesterday so he could take the class yet a fourth time. He wasn't able to challenge for a demonstration since the clinic was so short staffed. A local company is delivering heparin and dressing changes, so we should be covered. Chris can do this in his sleep. I can walk you through it step by step, as well. The only reason I can't do it for myself is that the line is in my upper right arm and I am right handed.

It's been a very emotional two weeks. My transplant doctor encouraged me to withdraw from school. The steroids wreak havoc on my body and with my moods and academic ability. I have reached a compromise. I dropped down to two classes. The two professors teaching know exactly what's going on and have shown me a lot of kindness as far as assignments and exams go.

I'm disappointed.

I also continue to learn the lessons that come when it's not cancer.

Just because someone you know has been treated for cancer, it doesn't mean that it's ever over. They are struggling with the life that comes after treatment; as a result of treatment. Don't think your friend/acquaintance is finished and has hit the ground running. Above all else, don't tell them that you had no idea that chemotherapy wouldn't be the end of it.

I have heard all of these things. Most of you have as well. I resist the urge to unleash on the most clueless of my acquaintances who continue to tell me that they had no idea regardless of the number of times I tell them that I'm in this for the rest of my life.

Life doesn't stop, it only takes a different fork in the road. The quality of my life is good. This latest set back will only be a nuisance for me, because I refuse to let it become something more. I will finish out this semester. I will take two classes next semester. I will continue to be available to anyone who wants to talk about cancer and the treatment process. I will hold hands and give out hugs and offer comfort. Because I can.

Wednesday, October 6, 2010

Set Back

Ann complained of being "a little short of breath" one day while walking to class last week and those few words have proven to be like a small snow ball rolling down an alpine mountain side. Pressing question was "how tall is the mountain and how big will the snow ball get"?

Well that and the chest x-ray that MDA took last week, which showed a couple more fluffy infiltrates on it that weren't around on a similar one from a year ago. With that MDA went into overdrive looking into what the source of the breathlessness (dyspnea) and fluffy looking wisps are. Principally the cause was one of the following: Lymphoma, Extramedullary ALL, Aspergillosis (or some other equally unattractive fungal variant), Pneumonia, or GvHD.

One open lung lung biopsy, liver biopsy, lots of blood work and 5 trips to Houston later and we have an answer - chronic GvHD of the Lung. This is an add on to the skin, eye, mouth and liver manifestations that have already flared up.

So good news here is that in general GvHD is good. It is much (very much) preferable to Leukemia and Dr. K believes that Ann's new case is relatively mild. The treatment is Steroids, and Ann has had a fast reaction to them in the past. So the steroid pulse may only last a couple of weeks or months.

Unfortunately there is a down side. Puffiness, low immune system, anti-biotics, anti-funguals and a few other things that Ann will probably have lots more to talk about. That’s a subtle way of saying she's going to want to vent...lots and I'm not going to take that away from her.

For my part, I'm just grateful that she's still here for me to love.


Thursday, September 30, 2010

The places you will go

I've finally learned something. Not all hospitals are created equally. Duh. I really already knew this, but it really hit home when I saw my numbers from Wednesday's blood work at MDA. Did I mention that I was in Houston?

The liver numbers from MDA weren't very changed from the last set taken in Houston. This means that the cell counter at my local hospital isn't quite as sensitive, because the numbers were different. Live and learn.

I saw a pulmonary specialist Wednesday morning and she didn't tell me what I wanted to hear. She showed me a few X-rays of my chest. The lungs should be nice and black in an X-ray. My lungs have a fine haze of spider webs snaking across them. The doctor didn't like what she saw. She's an expert in GvHD of the lungs and informed us that my picture didn't fit the typical profile. She wasn't ruling anything out, though. She ordered a CT scan for that day. She also ordered a bronchoscopy, which couldn't be performed until Thursday.

By the time I was finished with the liver ultrasound that my transplant doctor had already scheduled for Wednesday and checked in for the CT scan, it was after 3. I didn't get out of the scan until after 9. Chris and I had to get a hotel room, which we weren't prepared to do.

Dr. K. advised us to book the room through Friday since she wanted a liver biopsy performed as well.

I had the bronchoscopy today. I also had a last minute lung biopsy while we were at it thanks to the results of the CT scan. I feel like I've been punched in the throat from both the inside and out. Essentially, a small, flexible scope was inserted up my right nostril and into my lung. I was warned that I might wake myself because of coughing. I did. It was brutal. The team was great, though.

They'd hoped to get five tissue samples for the lung biopsy. They had to stop at two. When they were harvesting tissue, they accidentally cut into one of the lesions causing the problems in my lungs and I started bleeding. They didn't want to risk taking any more chances. As a bonus, when they were pulling up that second sample, a third little nugget came up with it.

I was sent for X-rays after this and the doctor that performed the lung biopsy sat down with me to explain my CT scan. She was lovely and very apologetic for the whole bleeding thing. It happens. In her words, there are fluffy looking infiltrates in my lungs. I saw the X-rays and the CT. There certainly are. While they were fishing around in there, they also did a lung wash so that they could do a culture. They aren't ruling anything out. I might know something by the middle of next week.

The liver biopsy couldn't be scheduled for tomorrow, so Chris and I elected to come home. The doctor warned me that the biopsied lung could collapse up to 24 hours after the procedure and that I need to take it really easy. This means no school for me tomorrow. I'm missing another exam.

I have to return to Houston for a few days to see my transplant doctor and have the liver biopsy. I'm laying low until then.

Monday, September 27, 2010

Monday Rush

I have a small break between classes, so here's a quick update for you:

The nurse from my local oncologist's office just called with my blood work results. I'll cut to the chase--LDH: 269 IU/L; ALT: 338 IU/L; Alk Phos: 171 IU/L. My LDH has improved dramatically and is once again in the normal range. I will tell you all what I've been told by countless doctors. Your LDH can be elevated for a thousand different reasons. The numbers I'm more concerned with are the ALT and Alk Phos. They've improved a little. They are still in the high range, especially the ALT. It was more than eight times the high end of normal last Wednesday. It is now six times higher than the high end of normal.

This could still mean that steroids are in my very near future. I haven't heard back from my transplant doctor in Houston yet. She may not receive the numbers until the end of the day, depending on when they check the fax machine. All I do know is that if it walks like a duck, and it quacks like a duck, it could very well be a zebra.

The only other thing that I have to report is a brief episode this morning when I found myself a little short of breath. I was walking to class and realized that I was getting winded and had to slow myself down. I ended up using the elevator instead of the stairs and had a brief coughing fit while I tried to catch my breath.

I didn't see any ducks or zebras, so I don't know what to make of it.

Sunday, September 26, 2010

Cautiously Optimistic

Thursday, it became obvious to me that my liver was indeed swollen. My abdomen was a bit distended on the right side and I could feel the organ pushing against my lower rib cage. Sitting became mildly uncomfortable as it felt like something that shouldn't have been bending was getting folded. Since I had to sit through classes on Thursday and Friday, I compensated by fidgeting in my seat.

By Friday night, I could see that the swelling was starting to recede. My abdomen is still slightly swollen and I can still feel the offending organ pushing against my rib cage. As for my lungs, I hadn't noticed that my capacity was diminished in the first place and I still can't detect a difference.

Monday is going to be a marathon of a day for me. I've got two classes in the morning and a make-up exam at 10:30. As soon as I finish the test, I have to hustle across town to have blood work done. I'll have my fingers crossed that traffic will be light and the line to get stuck by a phlebotomist will be short. As soon as that's over, I'll have just enough time to get back to campus for my last class of the day. Part two of the statics exam is Tuesday, so no sleep for me.

Thursday, September 23, 2010

Major and Minor Irritants

I had my 2 year check-up at MDA yesterday and things did not go as I had planned. Lest you worry unnecessarily, as far as I know, I'm still cancer-free. I had a bone marrow biopsy done as part of the standard protocol, but as most of you know, the results take time to decipher. I should know the preliminaries some time next week.

As part of the 2 year check-up, a pulmonary function test was administered. I failed. The last PFT I took was six months ago and my lungs were functioning at 90%, which isn't bad considering the beating my body has taken. This go around, my lung function is 60%. The research nurse in charge of the SCT survivor study revealed my failure to me after quizzing me about having a cold or some other funk. I haven't had a cold and don't have a reason for failing the test. Chris has mentioned that I've been coughing in my sleep. All concerned think I may have GvHD of the lungs.

That's not something that I was prepared to hear.

It doesn't really get better.

My liver enzymes are up, again. Not to be outdone by my stealthy lungs, my LFTs are WAY up. Signs point to GvHD of the liver.

Wasn't ready to hear that, either.

Dr. K. ran down a list of symptoms that I should be displaying as a result of the wonky lung and liver issues. I'm asymptomatic, which is leaving the transplant team stumped. Those of you who have been along for the ride since the beginning know that I was essentially asymptomatic when I was first diagnosed with leukemia. They had to draw blood to nail it down.

The good news is that if I have GvHD, then I don't have leukemia. The bad news is that I probably have GvHD of the lungs and liver. That's bad stuff. I've spent today in a relatively foul mood because I've been hosting a little pity party.

I would have stayed in my pajamas moping around the house had it not been for part one of a two-part structures exam. That's right, I took an exam today after spending the entire day either getting poked, harvested, or on the road. I am an obstinate glutton for punishment.

The possible diagnosis of major organ GvHD is the major irritant in my life right now. I'm only irritated because I feel that my body is conspiring to throw me off of my schedule. I am determined to see this college thing through. I'm too close to finishing to shelve it right now. I'm irritated because I feel like I've started yet another life-project only to have the proverbial other shoe drop. Size 200 shoes on my size 8 head. If push comes to shove, then of course, my health comes first.

Dr. K. doubled my tacrolimus dose in the hopes that the immunosuppressive might bring my misbehaving immune system back into line. I have to see my local oncologist Monday to have blood drawn. They'll be checking my liver enzymes. If they don't come down at least a little, then I'll have to have another liver biopsy. Winner, winner, chicken dinner.

If the liver function starts to trend in the right direction with the increase in tacrolimus, then I'll have an ultrasound of the liver, instead. I'd much prefer this option.

Since I failed yesterday's PFT, then I have to have another one in the very near future, in addition to seeing a pulmonary specialist. Lucky me, I get to see the doctor that runs the PFT lab. If my lung function is once again sub-par, then I know that a lung biopsy will also be in my future. Call it a strong hunch.

If all of the poo-poo boxes get checked off, then the next step will be to start taking steroids again. I'll be taking something like 66 mg a day. That just pisses me off. If you're relatively new to my adventure, then you can see why in the archives for late 2008 through early 2009. I become a monster on steroids and have a very strong Cushing's reaction. And my bones are fragile enough and there's the whole avascular necrosis thing you have to worry about. Thanks, but I have enough on my plate.

The minor irritant in my life is that I will have to miss more classes to take care of all of this. It's not a big deal. I know this. My professors have been very understanding. I'm just irritated because this is further physical proof of how I'm not normal. It is a gnat in the eye of my existence. I will get over it. I will not let it bother me after today.

For those that like to know, here are my numbers:

WBC: 8.0 K/UL
RBC: 4.32 K/UL
PLT: 340 K/UL
ANC: 5.44 K/UL
ALC: 1.02 K/UL
AEC: 0.62 <---------This is high and is a classic indicator for GvHD or parasite infestation, take your pick.
Ferritin: 3695 NG/ML <---------High, again. This is a measure of the iron stored in your liver. Normal is 10-291 NG/ML. Transplant patients have increased ferritin levels as a result of all of the blood products we need in order to survive during treatment.
Alkaline Phosphatase: 276 IU/L <---------Normal is 38-126 IU/L
LDH: 983 IU/L <--------Arrrghhhhhh! Normal is 313-618 IU/L
Alanine Aminotransferase: 431 IU/L <--------Really? Normal is 7-56 IU/L. To know me in real life is to know that I'm cracking wise about these misbehaving measurements. Right about now, my friends Tina and Heather are cracking up about my nonsensical shenanigans.

I really am fine about everything. I just needed a day to walk around in a snit about things. I know all of these things are treatable and my amazing medical team is on top of it. I'll keep everyone informed of the next step in diagnosing the problem. Thanks for reading my rant and holding my hand.

Monday, September 20, 2010

Hello

Just a quick word to let you all know that I'm still here. I'm swamped with exams and papers this week, so this could very well be the only time I pop in. Chris celebrated his birthday last Friday. :)

Sunday, September 12, 2010

Cuteness

Thought I'd leave you all with something to look at when you pop in. I found some cute iron-on transfers the other day and decided to get crafty. I've customized some onesies for my nephew who's due in November. Here's my favorite one:


Busywork

Physically going back to school has been an adjustment. No surprise there, but it's been challenging in a few ways that I hadn't fully considered when I made the decision to try my luck. I expected to be tired from the physical act of walking on campus with an over-sized bag strapped to my back. I suspected my skin would take a beating from the increased sun exposure.

The thing I didn't count on was allergies. The bulk of my classes take place in a building that was formerly dominated by the business school, but is now being transitioned over to the school of engineering. The business school is getting a brand new building next door in what was formerly a commuter parking lot. Anybody making the connection, yet?

There's major construction a few feet from where I walk five days a week. This means a constant parade of heavy equipment stirring up dust and shaking the many oak trees that line the sidewalk. ALLERGIES!

Chris tells me that I've been coughing in my sleep. I'm not surprised with all of the environmental particles I've been inhaling during the day. Let's not forget all of the chalk dust in the classrooms and whatever else lurks in the seat cushions of the stadium seats. I'm hopeful that my system will adjust and not be overwhelmed. The last thing I want is to end up in the hospital with a respiratory infection.

Classes have been going well. For those that are interested, I'm taking: management, highway construction, structures and mechanics (engineering/physics), construction business administration, engineering economy (finance). Yes, I have lost my mind. I had to take most of the technical classes this semester since they're on the critical path of major classes and segue into the next batch of critical classes. If I'd split them between this semester and the next, I would have added an extra year to school.

I have an appointment in Houston for my 2 year check-up in a few weeks. I'll have a bone marrow biopsy/aspiration and see my transplant doctor. Coincidentally, I have a management exam and an ethics paper due on the same day. The first part of a structures exam is also scheduled for the next day. As an aside, if an exam has to be scheduled to take place during two consecutive class periods, shouldn't that be an indication to the professor that there's too much material on the test? Can't forget to mention the first half of a business plan due the same week.

Chris suggested I reschedule the appointment in Houston. I should have from a logistics stand-point, but emotionally, I couldn't do it. I'd rather take a slew of make-up exams and turn the paper in early. I need to follow through with the MDA appointment for my peace of mind. The test to determine minimal residual disease takes weeks to return a result and I'd rather have the results sooner rather than later.

I'll pop in next week to let you all know I'm still lurking.

Sunday, September 5, 2010

Transplant birthdays

Monday, September 6, marks two years since I received transplant number two. I can't remember number two with the same clarity as number one. Perhaps that's due to some bizarre been-there-done-that ennui that comes with prolonged treatments. Up until that point, I'd had so many chemotherapy sessions through my CVC and injected intrathecally into my spine. There was a bout with PTLD which brought more chemo and more scans and more treatment. I've lost count of the number of times I had to go to the ER in the middle of the night because of fevers or bone pain. I couldn't tell you the number of bone marrow aspirations and biopsies I've had. Lumbar punctures? I've had more than a few.

There are scars: one on each side of my chest to commemorate the multiple CVCs, one on each bicep to mark the existence of multiple PICC lines, track marks on my arms from the myriad blood draws, a cluster of divots low on my spine from so many lumbar punctures. The backs of my hips hurt when pressed thanks to all of the bone marrow samples and bone fragments I've had removed to be tested for minimal residual disease.

I'm not alone in all of this. I've got friends who are also doing this for a second time or have done it multiple times. We have all heard some permutation of the phrase, "I'm sorry, the leukemia is back." We have all choked back some horrible miasma of grief/anger/rage/disbelief. We have all fought and continue to fight.

My life has been touched by the resilience we all share. Each of us struggles in our own way and yet every day, we resolve to put on our game faces and forge ahead for ourselves or our loved ones or just to spite the son of a bitch that is cancer.

On Monday, I will be two. I will get to do all of the things that I'd thought lost to me that horrible day in July when I was re-admitted to MDA. I will be grateful for the dust bunnies under the couch and the crazy sago palm in the front yard. I will relish the obscene amount of reading that must be done for class. I will tell Chris that I love him. I will be thankful for Dana.

So many people worked so hard to save my life, twice. Dana sacrificed to give me this second chance at life and I will be forever grateful. Chris put his life on hold to nurse me through this. So many people helped us in a plethora of ways and without all of you, we wouldn't have been able to do it.

On Monday, I plan on being as mundane as possible. I will do homework and eat leftovers. I will ignore the army of dust bunnies mounting an attack on all horizontal surfaces. I will allow the cats to bully me into giving them extra treats and I will hold my husband's hand. I will smile and be grateful for the many friends I have made, but not met because of this adventure. I will be thankful for those who are selfless enough to become members of the bone marrow registry. I will be grateful for all of you who continue to read the blog.

Because I want to.

Because I can.

Friday, August 27, 2010

Week 1

The first week of classes is behind me and I am exhausted. I know I throw that word around a lot, but once you've gone through any type of major illness, exhausted becomes a regular part of your vocabulary. Leading up to the first day of class, I was much more active than I have been in the nearly four years since this all began.

This week has challenged me on a new level. I'm now attempting a level of activity that's outside of my comfort zone. I'm attempting to play normal with the other kids.

The LSU campus is enormous and open and peppered with a confusing assortment of old buildings. As a student, you will do a lot of walking. I've been fortunate this semester. Most of my classes are confined to the engineering building. Unfortunately, I still get more direct sun than I'd like.

I was able to get a parking permit that would allow me to park closer to my classes, thanks to my very understanding BR oncologist. He's an alum and remembered what a nightmare commuter parking at LSU can be. He was worried about the sun exposure setting off my GvHD.

I've been religious about wearing three different sunblocks, but I'm still having GvHD issues. My cheeks and nose are covered in rashes and scabs on a daily basis. It itches. There's a spreading rash on my left forearm that looks a bit like a sunburn. It's sensitive to the touch and feels very much like a sunburn. My feet, hands, and calves have been cramping off and on throughout each day. It makes concentrating in class something of a game. At home, I can get up and walk around to stretch the muscles. I can't do the same during a lecture.

As far as I'm concerned, these are all very minor nuisances in the big scheme of things. If a little discomfort is the price I have to pay for normalcy, then bring it on. I'm happy to be able to do it.

I've already got several assignments due next week, so blogging is going to be tough. I'm going to do my best to stick to my once-a-week promise. If I get a little behind, don't worry. Sometimes, no news really is good news.

Monday, August 23, 2010

YIPPPEEEE!

The grade for my marketing class just posted: A
Thank you, Dr. Karam!!!

I just had to post since I'm sure Chris is getting sick of me running around the house with my arms in the air, yelling, "YAY!"

For the record: He's proud of me and wouldn't mind if I jogged down the street doing the same thing. :)

Another first

I have survived my first day of classes and am stealing a few moments to update the blog. It's just as I remembered it, except the familiar faces from what would have been my graduating class have been replaced with a whole new cast of characters. I was pleasantly surprised to find that I had two classes with two professors from my last semester at LSU. One of them greeted me by name as he handed me a syllabus. It was a lovely, normal moment.

I have two classes tomorrow and if they're at all like the three that I had today, I know that I will have a tremendous amount of reading ahead of me. I've already had to speak to two of my instructors regarding schedule conflicts. It seems that my two year MDA check-up coincides with an exam and an ethics paper. It will all work out, so I'm not going to waste time worrying about it.

Now, if you all will excuse me, I have a few books to crack.

Thursday, August 19, 2010

Where do I begin?

I have taken the final exam of my marketing class and am happy to be done. In January, when I first decided to attempt this undertaking, I had legitimate concerns regarding my ability. I'd had Hyper C-Vad, modified Hyper C-Vad with L-Asperiganase, Rituxan, intrathecal chemotherapy, and two courses of consolidation chemotherapy. I have had my immune system burned out of my marrow twice. I have had so many drugs and combinations of toxins that I marvel at my ability to function some days.

My doctors warned me that I would have cognitive issues. I would need to learn how to process information differently. I was warned that I would have issues handling stress.

All true.

I've discovered that my academic effort must be tripled in order for me to do an acceptable level of work. By acceptable, I mean "passing". I used to be the kid that could breeze through school with a minimum of effort. Not so much anymore.

I've learned that I need to rely on flashcards and repetitive drills. Chris plays an integral role in all of this. He holds my hand and encourages me to approach problems from multiple angles. It's been largely due to his encouragement that I managed to get through this.

I will begin physically attending classes at LSU on Monday. I'm taking five classes. The very thought of it makes my heart race. The anxiety is building.



Saturday, August 7, 2010

Checking in

No changes here, which is a good thing. I couldn't let the blog slide until 8/20. It didn't feel right. I've handed in the final assignment for my marketing class and am currently reviewing for the last exam. I start physically attending classes two weeks from Monday, and the butterflies are fluttering. I'll check in once I've taken the last marketing test.

Saturday, July 24, 2010

Thoughts on steps without me

I admit my blogging has been exiguous. Mostly, this is because I've been working quite hard at my job now that I've been transferred to the corporate office, but also because there is less of the sort of thing going on that lead to the creation of this blog. That's a good thing, and it has led to things like Ann's solo trip to Houston.

Ann's trip to MDA without me has caused a breakthrough in my thinking. Each journey there is like a big-event and is proceeded by (for me at least) a week's worth of humorless worry and crushing anxiety. So much depends on those trips that I have long given up on the idea of routine exams and I made sure that I was there each time so I could hold her hand.

Ann and I spent every day on the 8th floor of the Clark Clinic at MDA for what seemed like years. Without too much difficulty I can remember with a voluminous mix of despair and dread everything we fought so hard to overcome while there: induction, blindness, wheelchairs, having no home, desperate donor searches, insurance denials, transplant, relapse and transplant again.

I could have taken vacation or sick time to go with her, but I didn't. I could have begged off of my reports and deadlines until the end of the week, but I didn't. I don't think I would have lost my job. So why did I let her go alone this time? Why did I allow her to go and face the beast without even moral support?

My sneaking suspicion is because I needed to, and she needed me to let go just as badly. Which is not to say that I don't feel one iota less guilty about not being there.

Life pushes toward its normal equilibrium in the absence of a crisis. Feeling scared, anxious, or guilty are just bi-products of that process and we can't control it. Ann needed to be able to do something big without support. I needed to focus on work and put my anxiety away. And she needed me to do this as well.

Thursday, July 22, 2010

Driving solo

I had a GvHD check-up in Houston yesterday, and I think my transplant doc's exclamation, "Has it already been a month?" pretty much sums it all up. I have been in a doctor's office every two weeks like clockwork. It's either been for GvHD or some pedestrian crud.

Taking 0.5mg of tacrolimus twice a day seems to have done the trick. My GvHD is back in line with where it was before the flare-up: just enough to be very mildly irritating, but not life-threatening. I still need to use the steroid mouth-rinse, because the tissue is still sensitive. I get a blister on the left side off and on.

Chris was swamped at work and so I made the trek alone. The drive was pleasant mostly thanks to my sweet hubbie's thoughtfulness. He assembled a music play list containing my favorite band and gassed up the car the night before.

Five hours of driving, four hours of MDA, and then a little over five hours of driving home. Exhausting.

Here are the numbers for those that are interested:

WBC: 7.9 K/UL

RBC: 4.07 M/UL (WOO-HOO!)

HGB: 12.8 G/DL

PLT: 362 K/UL

ANC: 5.34 K/UL

ALC: 1.28 K/UL

AMC: 0.92 K/UL

AEC: 0.29 K/UL

My tacro level is less than the measurable amount, which is fine, because it's keeping things in line. Dr. K. ordered an immunity panel which returned in the low end of normal, even on tacrolimus. This is a good thing and shows that the killer T-cells are theoretically capable of doing the job, so to speak.

As for me, I had a few curve-balls to throw at Dr. K. The first on being the laundry list of vaccinations LSU wants me to have before they'll allow me to attend classes. Dr. K. had a letter drafted explaining why I can't have them and explained that due to my compromised immunity, there is a very large chance that getting these vaccines would end in a reactivation of these viruses which would lead to some seriously bad stuff. The second requirement LSU has for me is a PPD test to show whether I've ever come into contact with TB. They want this because: A) I was born in Asia, B) I have had leukemia, and C) I take immunosuppressants. MDA doesn't normally do this test in-house. It's a skin test that must be read 48 hours after giving it.

Since it wasn't a practical proposition to have it done in Houston, I'm going to see if my local oncologist can do it. If he can't, I'll find someone. I also need to see about getting a temporary parking pass that allows me to park closer to classes. I spent 15 minutes in the sun walking from my car to a test on campus and came away with my forehead, nose, and cheeks covered in small blisters, scabs, and pustules. It itches and is uncomfortable. I was wearing a dedicated sunblock and two other products containing sunscreen. I don't know what doing that everyday would do to me.

My final curve-ball for Dr. K. came in the form of a question: Have you ever had or heard of a female patient post transplant being able to carry a pregnancy to term? Due to the excessive chemo through two transplants, I am sterile. I've been seeing a lot of sensational new articles or documentaries about women in their sixties and seventies being able to conceive and give birth thanks to donor eggs and in-vitro fertilization. If they can do it, why can't I?

Dr. K. explained that she's never had a patient post-transplant do it, but that there is plenty of data that shows that it's possible and does happen. She also explained that she can't see any reason why I couldn't do the same with a donor egg. She cautioned me to wait until I was cancer free for five years. The magical five year mark is when the chance of relapse plateaus. I understand her caution and I also understand that I'll have to see a fertility doctor in order to determine whether this little scheme is even feasible. I'll put it on the back burner while I concentrate on finishing school.

As for that, I have three more lessons to finish and one more test to take in order to be done with my marketing class. I'm up against a hard deadline, so things will be quiet here until the last week of August. If something is wrong, I will post. If something deserves celebration, I will post. If you don't hear from me until 8/21, then know everything is status quo.

Sunday, July 11, 2010

Home

Chris and I have been home for the last week, and it feels like we've been running nonstop since stepping off of the last plane. I won't bore you with the minutiae of our travels. We were able to see most of my family during the short four days we were in California and it was a very special time that we'll cherish.

My grandmother had a kidney infection, kidney stones, and blood clots. Due to her age, the doctors were hesitant to operate on her. Nonetheless, they did, and I am grateful. She'd been home for less than two weeks when we arrived. It's been six years since I saw her last and we've all been through so much. She's not as mobile as she used to be because of arthritis and has to use a wheel-chair to get around. It hasn't seemed to slow her down.

This trip has given me so much to write about, and yet I'm finding it to be next to impossible to put anything down. Maybe later, when I've had more time to sort through things. Until then, I'll leave you with some pictures.

My Grandmother:



Aunt Kim and my brother, John

John and his wife, Mandie

Aunt Lang, Mandie, John, Aunt Kim, and me

My Aunt Lang hosted two barbecues while we were in California.

My Uncle Toi, Lang's husband, on the far left, and my mother on the far right.


My fabulous grandmother holding court.

Mandie and John

Toi, my cousin Kiet, and his mother, my Aunt: Ma Hai

From the left: My Uncle Tony(Kim's husband), Kim, Lang, and Toi

My cousin Richie, Kim's youngest son

My cousin Brian, his dad and my Uncle Loi, Loi's wife Bonnie

Quite a family resemblance


These last two pictures were taken yesterday in Baton Rouge. Chris and I attended a birthday party for our friend Van's daughter, Rosalyn Grace. I've known Van for years and was able to attend his wedding in 2008, two months before I relapsed. Yesterday, I met Rosalyn Grace for the first time. It was yet another first that I wondered if I'd ever get the chance to experience.
Van
Rosalyn Grace. She's a thousand times cuter in person and has the most soulful brown eyes. It's hard not to fall in love with her.



























Wednesday, June 30, 2010

Long weekend

My 91 year old grandmother had a medical scare a few weeks ago and ended up in the hospital for a few days. I haven't seen her since having been diagnosed with leukemia close to four years ago. She speaks very limited English and the few Vietnamese words I know either involve eating or cursing, but we muddle along.

I got clearance from my doctor to fly out for a visit. We'll only be there for the weekend since Chris needs to get back to work.

Family is a part of my life that is complex and convoluted. Sure, you say, you and everyone else. I know that I'm not alone in this. I only mention it because even now I'm having difficulty writing about the trip. I'll post pictures when we get back, but as for a recap of the visit, I can't make any promises.

Thursday, June 24, 2010

MDA follow-up

Yesterday was yet another day in Houston, but this time it was expected and has been on the books for three months. It was supposed to be my 21 month check-up. Thanks to the GvHD flare-up two weeks ago, it was a follow-up to see how the medrol and prograf had affected the situation.

The itching that had propelled me into MDA two weeks ago has become very tolerable. I still have moments of insane scratching, but the episodes are happening with much less frequency. I thought the GvHD in my mouth was getting worse, but now I suspect I forgot to use the steroid mouthwash one day. My gums and the lining of my mouth were swollen and sore and I didn't get much of anything accomplished that day due to the distracting nature of constantly feeling like gremlins were rubbing the tender tissues with sandpaper. I will try to never forget the dexamethasone rinse again.

Spicy food consumption is way down in the Gregory household. Vanilla ice-cream intake is up. The ice-cream is nice and bland and the temperature soothes the inflamed tissues. That's my story and I'm sticking to it.

Dr. K. was non-plussed by this past weekend's mystery illness. She said the fact that some of my blood counts were elevated accounted for it. She also authorized the next round of vaccinations. Five shots. Two arms. I'm still sore.

As Dr. K. sorted through the mystery that is my GvHD, she speculated that I'm gearing up for a big flare-up. No one wants that, especially me. It means discomfort and months of steroids. No thanks. She's increasing the Prograf to 1mg per day. I'll stay on it for three to six months, then we'll see about tapering off. I won't have to start taking antivirals or antibiotics since the drug will only be maintained at homeopathic levels in my system. I will be more susceptible to illness, so I'll take precautions.

I also saw the dermatologist who specializes in skin GvHD. She took one look at me and said, "We don't need to do any biopsies, I can see the remnants of the rashes." Hooray for that. She wants me to use steroid cream in place of the tacrolimus ointment, but I do have the option to use the one that I find works best. Dr. H. also took a look at a mole that appeared on the top of my right foot after the first transplant. Apparently, it happens. She wasn't worried about it three years ago. It's a little bigger these days and since my dad struggled with skin cancer, I wanted to be safe. She still thinks it's benign, but she had pictures taken for my file.

As for the numbers, here you go:

WBC: 7.8 K/UL (4.0-11.0 K/UL)

RBC: 3.99 M/UL (4.00-5.50 M/UL)

HGB: 12.5 G/DL (12.0-16.0 G/DL)

PLT: 282 K/UL (140-440 K/UL)

ANC: 5.28 K/UL (1.70-7.30 K/UL)

ALC: 1.11 K/UL (1.00-4.80 K/UL)

AMC: 1.22 K/UL (0.08-0.70 K/UL) This reading accounts for the fever over the weekend.

LDH: 612 IU/L (313-618 IU/L)

Alkaline Phosphatase: 183 IU/L (38-126 IU/L)

Alanine Aminotransferase: 153 IU/L (7-56 IU/L)

As you can see, my liver is still not behaving. It is what it is and we'll deal with one thing at a time. My thyroid levels are now normal thanks to the Synthroid prescription. I can feel a difference and I'm all the happier for it.

I need to see my local doctor in two weeks to have my Prograf levels tested. July means another trip to MDA to check my progress with graft versus host disease. Until then, it's business as usual around here.

Sunday, June 20, 2010

Ill equals normal

GvHD manifests in many ways, and for me it's the skin, eyes, mouth, and occasionally the muscles and joints. It can hit you in a myriad of combinations and no portion of your body is safe. Thursday night, my feet started cramping and the toes kept locking in unnatural positions. When it's at its worst, my toes spread very widely and curl upward. This is what kept happening first to the left, then the right foot.

When this happens, I find it helps to massage my foot. If that doesn't work, I have to walk in order to stretch the muscles. I had a really hard time finding relief and as soon as one set of muscles would relax, the other foot would kick off. I took an ativan in the hope that it might help relax the muscles a little.

The ativan didn't help with the GvHD, but it did put me to sleep, which is all I was trying to do in the first place. Chris woke me an hour or two later because he said I felt really hot and needed to take my temperature. I can be an extraordinarily graceless person when my sleep is disturbed, so I know Chris must have been worried when he did so. 100.8 degrees fahrenheit.

Post-transplant, a fever of 101 degrees fahrenheit is a mandatory trip to the ER. Fever usually means an infection and transplant patients aren't so good at fighting them off without a lot of help. For me, it usually means three or four days in the hospital getting a cocktail of IV antibiotics. Dare I mention the poop swabs?

I did not go to the ER. Chris wanted to take me, but I argued that I'm nearly two years post-transplant and that the fever was probably the result of the excessive GvHD that I'd been suffering with that day. I now believe it was the other way around.

I think the GvHD flares were a result of my immune system reacting to an infection, but not quite understanding how to deploy an effective defense. Instead of sending in a small team of special forces, my immune system went nuclear and started attacking everything, hence the excessive itching and horrible cramping.

When Friday morning found me still feverish, I put a call in to my local oncologist. A nurse returned my call a few hours later. After getting details, she promised to confer with Dr. B. The result was an appointment with his APN, G., for the same day.

Dr. B. ordered so many blood cultures, the phlebotomist had to use both arms to draw blood. When I asked what the cultures were for, she blithely replied, "Everything."

By this time, I was feverish, my head hurt, I was nauseated, I had a sore throat, and all I wanted to do was sleep. G. checked me out and relayed the information to Dr. B. He popped in between patients and looked me over. Because the symptoms of leukemia can be similar to the symptoms of an extreme case of the flu, he decided to check a blood smear. He didn't think that I was in the throes of a relapse, but considering how it all manifested the last time, he wanted to be cautious.

A prescription for Biaxin was called in and he promised to call if he saw anything strange in my slides. I went home and slept for the rest of the day. There was no call, so I feel pretty confident that I'm suffering from some pedestrian illness.

I've been fever free for almost twenty-four hours. I get nauseated if I'm in a moving car, and I'm still not one-hundred percent. I'm pretty certain that the antibiotic is doing its job and helping fight off the infection because the skin GvHD has come roaring back. Although I itch as a result, I'm happy for it. I'd rather have this manageable complaint than the alternative.

Since I'm housebound, I've managed to think up a new knitting project using some yarn that's been languishing in my motley collection, so the down-time isn't totally a waste. I'll resume coursework tomorrow. The deadline is quickly approaching and I have six more lessons to turn in, as well as two tests left. This means I won't be answering calls or be present on the digital front for a bit.

I'll pop in once a week to keep everyone updated.