Wednesday, December 15, 2010
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
Thursday, December 2, 2010
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
Tuesday, November 16, 2010
Saturday, November 13, 2010
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
Monday, November 8, 2010
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.
Thursday, November 4, 2010
To get the numbers out of the way:
Alkaline Phosphatase: 75
Alanine Aminotransferase: 63
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
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.
Thursday, October 28, 2010
Wednesday, October 27, 2010
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
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
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
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
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 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
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 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
Sunday, September 26, 2010
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
Monday, September 20, 2010
Sunday, September 12, 2010
Sunday, September 5, 2010
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
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
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
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.
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
Saturday, July 24, 2010
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
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
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.
Aunt Kim and my brother, John
Wednesday, June 30, 2010
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
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
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.