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.

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.

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.

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.

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.

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.

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.

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.