Day +288

Written language can be a funny thing, the same can be said of human perception. I once took a class with a particular professor in my chosen major who insisted that we write in single stroke upper case. I subsequently went on to take three other classes with him, so my handwriting became upper case block print. I didn't think anything of this since everyone else in the professional field I aspired to also wrote in the same style. Unfortunately, my day job wasn't in this field.

I worked with a person who could kindly be perceived as "high maintenance". Generally not a bad person, just difficult to please. When I would leave a note behind to explain what had been going on when he was off, it was written in single stroke upper case. I soon discovered that this left him unhinged as he would call me angry and upset that I would be "yelling" at him by leaving written notes all in capital letters. His perception was that I was being irrational by writing in all caps. I explained the reason behind my handwriting to no avail. Our supervisor had to intercede to calm him down. He eventually backed off of me, but when a subordinate left a note written in all caps, he exploded all over again. I'd received several notes from the same person and she just wrote with the caps lock on. Perception.

The same guy used to get really bent out of the frame when I said, "Okay," while he was explaining something to me. For example: "You do it like this;" "Okay." His face would get very red and his manner would become brusque. At one point his body language started setting off my alarm bells so I just asked what the problem was. He felt that I was mocking him and blowing him off every time I said "okay" to acknowledge that I'd heard and understood him. It would appear that this is what he did when he was dealing with someone who he thought was inferior. I suppose the lesson that I'm trying to convey is that we're all on a different page as far as life experiences and perceptions go.

It's not my intention that people perceive Chris as an "alarmist" who "incites hysteria." An angry and hysterical mob wielding pitch forks and torches has yet to ring my door bell as a result of Chris' actions. I sincerely believe that Chris is one of the reasons that I got my transplant. When my insurance company refused to pay for my transplant because someone in the "medical field" reviewing my case said it would be experimental, Chris took it upon himself to contact every major cancer research center to get their foremost expert on leukemia and transplants to write a letter of protest. Most doctors obliged gracefully. Chris was able to assemble quite an impressive and pedigreed list of doctors' letters arguing that stem cell transplant using cord blood was not experimental. The insurance company flipped its decision regarding my transplant before Chris was able to submit the packet. It would seem that the doctor who reviewed my case was a GP with no experience with transplants, stem cell or otherwise. The reversed decision was not an act of compassion, but rather a decision to avoid bad publicity in the very likely case that I died as a result of their actions. There's more to that story, but I'm not going to get into it.

Chris was asked to turn the letters over to the head of transplant research. He had managed to accomplish something that they didn't think possible. It has now been turned into a packet that I believe is used whenever other patients run into similar insurance problems.

Chris makes sure that I follow doctor's orders to the letter of the law. When he's not clear on something, he asks questions to be sure. He has a degree in mechanical engineering and gets teased about it regularly by staff because "you can always spot the engineers by the questions they ask." These are the guys who make sure that buildings don't collapse and machines are designed to perfom a "function". As far as design goes, I'd rather get involved in something knowing that the person who designed it asked a lot of questions and was supremely anal in making sure everything was as it should be. I'm just one of those people who doesn't relish laying under a pile of concrete because someone was having an off day.

I know that I'm reacting to a comment that was left and I'm sure that the person that left it was only trying to be helpful with good intentions. It's just that "hate" is one of those words that makes people stop actively listening. It tends to create an irrational feeling of bias regardless of an innocuous context. As for people in the "medical field" hating family like Chris, so be it. No single person is infallible and we all hate being questioned to some degree. I've made plenty of mistakes in my life that were corrected when someone "questioned" me. There are a lot of professions that get lumped under the banner of "medical field," from very well compensated doctors down to nurses' assistants who aren't so well paid. So, if a person with an extensive medical education resents me or a family member who peppers them with questions regarding a loved one's health, so be it. I'm currently watching someone die of a disease that is similar to mine because she's happy with the status quo and her doctor tells her not to worry that she's been running temperatures of over 102 for the last month. Her family members don't ask questions of the medical staff and friends that have dared to question the doctor's decisions have been brushed off as "alarmist." I suppose it's all in a person's perception. I've been in identical situations to hers and my team acted differently and I'm grateful, because I'm still here.

By no means am I slamming the medical community, far from it. There are so many bright and talented people in this community who are really working to make things better. These men and women have my utmost respect because they do such an emotionally and intellectually difficult job. I've been lucky in that my care has been under some very amazing doctors and nurses.

If my doctors and nurses get a bit piqued because I or Chris ask too many questions, then so be it. They're allowed to fire me as a patient. There is no law that says they have to have me as a client. They are encouraged to speak their mind and very often do with no lasting ill will on my part. I very much appreciate a doctor or nurse who can have an open dialogue with me. When I was getting ready to be transplanted, I learned that the average successful transplant patient weighed 5 to 10 kilograms less than me. Wanting to be in optimum shape on transplant day, I asked my doctor if I should lose weight to ensure success. I could tell by her startled look that I'd surprised her. Then she started to laugh quietly and told me absolutely not. Had I not asked, I would have been on some ridiculous diet in the midst of treatment. The thought still cracks me up.

I promise, Chris is not an alarmist and doesn't mean to incite hysteria. He's just a man who is worried about his wife and whether or not he'll get to spend a long life with her. As for me, I am following doctor's orders for when I'm neutropenic. This means no crowds of people and wearing a mask when I go out in public. No fresh fruits or veggies unless they've been cooked thoroughly; making a point of keeping my hands clean and not touching my eyes or mouth after handling something. Chris doesn't keep me locked up in a sterile bubble, I promise. Those of you who know me know that I wouldn't tolerate it. So, as far as following doctor's orders...check.

For the person who left the comment, I hope that I have not offended you and I really do appreciate that you spoke your mind. If you stop reading the blog as a result of my response, I'm sorry, but I had to let you know how I felt.

Grrrr

Day +287

I'm back to living in my gilded cage, hiding behind a surgical mask and washing my hands every few minutes. Hooray! My temperature is normal for me and even though I hate taking my temperature every few hours--it smacks of cancer treatment--I do it because I love Chris and hate for him to fret. Dr. Kebriaei called this morning and she's siding with my local oncologist as far as my counts go. It's just going to be a wait and see campaign. Fine by me, but I don't know if Chris will be able to survive the suspense. I have appointments at MDA next week, so the wait won't be all that long.

On a lighter note, I spotted Minnie the hit-and-run puppie out with her owner the other day. She's still wearing her sassy pink cast and I'm supremely happy to report that she's gained weight and can now be comfortably called a "chubby puppy".

Neutropenic Again?

Day + 286

WBC 2.5 K/uL
RBC 3.79 M/uL
HGB 11.7 G/dL
PLT 368 K/uL
ANC 0.6 K/uL

We had our follow up today with Ann's local hematologist and I can honestly say that I am concerned. The reason why is that Ann's absolute neutrophil count (ANC) has dropped below the threshold normal range of 1.0 - 1.5 K/uL. Ann's Hematologist says that this could be a normal reaction to the bug she picked up last week and it may clear itself. Further he indicated that he didn't see a reason to worry because Ann's counts were roughly the same as her last blood test.

I was (and am still) worried, so the first thing we did when we left his office was to call MDA and see where Dr. Kebriaei wants to go with this. In the meantime while we are waiting to hear back from them I am going to be proactive. Ann has enjoyed freedom from neutropenic safeguards for the last couple of months, but that ends today until this situation is resolved.

So it is back to taking her temperature multiple times during the day. No fresh fruits or vegetables to eat. Most of all though, it means that our little excursions to the market or grocery store will have to come to a halt and when in public a mask will no longer be optional equipment.

I would be lying if I said I wasn't worried or scared. I'm very much both. Why would Ann's ANC count cut itself roughly in half from 1.3 K/uL since our last check up to 0.6 K/uL today? What are the baby stem cells up to? Is this all part of a normal fluxuation in the production of blood cells that infant immune systems go through?

I wish I knew the answers. All I do know is that when I look into her beautiful brown eyes I know with absolute certainty that I love her more that anything else I can imagine.

By the way I should add that Ann says she "Feels great!" and doesn't see what the fuss is about.

Note: I do feel fine and I do understand Chris' concern. Let's not forget that I finished a round of anti-biotics last Tuesday because of an indeterminate bug. My local doctor says that my ANC is in keeping with that information. I'll be careful and I'll take all the precautions that I took when neutropenic during chemotherapy.

I keep blogging about how nothing is happening this week and it occurred to me this morning that that's not really true. I've talked about how my GvHD of the skin has been flaring up, but I haven't really been giving the whole story. Don't get excited, it's not salacious.

My hands have never really recovered from my initial bouts of GvH, especially the area around the nail beds. It's very prominent on both middle fingers and has caused the cuticle to completely disintegrate. The skin is very prone to tearing open in a ladder rung fashion up to the first knuckle, which causes considerable discomfort. At any given time the skin peels or scabs over which necessitates moisturizer carried on my person at all times. Every room in Dixie's house is replete with its own bottle of Cerave lotion.

This morning I woke to find that the GvHD has moved down on the inside of my wrist. There is a red peeling patch of skin roughly the size of a quarter about an inch down from the manifestation on my palms. It looks as though I must have been scratching it in my sleep because it looks a little abused.

I felt the need to call my dermatologist at MDA to get permission to start using steroid cream to treat all of the patches covering my body and discovered that she'd taken a short sabbatical. After much holding and transferring, they were able to track down one of the other dermatologists working with her on my case and she was able to set a course of treatment. I get to apply steroid cream once a day for the next week and possibly the one following that in the hopes that the baby stem cells back off of my skin. The doctor will be checking in with me in about a week to see what's happening. I thought it was interesting to learn that my most recent bout with the flu could be responsible for causing the flare up. Apparently, viral infections trigger the cells' memories, causing them to go crazy. She also informed me that stress can bring on an attack. I suppose I can look forward to a life time of dealing with this issue. If this is as bad as it gets, I can't complain. It's irritating, sure, but it could be so much worse. This time around it's on my legs, arms, feet, hands, and maybe my face--this could just be a break out, though.

The next time I'll see dermatology is in July. No worries.

On the field trip front, I got to go to the dentist with Chris this morning. I am a freak of nature in the sense that I love going to the dentist. It was really nice to get to visit with Dr. Cyndi and Dr. Toi. If you are in need of a dentist in the BR area, Premier dental care is amazing. I got to watch while Dr. Cyndi worked on Chris. Poor guy had two cavities filled, but the good news is that there was no mention of a follow up visit. I'm sure Chris was very much relieved since he doesn't share my enthusiasm for dental hygiene.

I plan on working on a bit of knitting this weekend to keep myself busy. I'm psyching myself up to attempt a sweater. There's something terrifying about having to put together a fabric puzzle when you're actually the person responsible for creating the pieces. Early recipients of strangely shaped scarves--Tina--will be happy to know that I have mastered the rectangle and am no longer menaced by the specter of mis-shapen gloves.

Now, for purely selfish reasons, I must take the time to thank my fellow transplant bloggers--Susan, Nancy, PJ, Leslie, Michelle and so many others. You guys are all so amazing and your comments never fail to conjure a smile. Also, the voyeur in me appreciates being able to peer into some one else's life. :)

Nothing of consequence to talk about today. I managed to go to the grocery store without bursting into flames every time someone sneezed. We did cut it a bit close, since it was after 3 when we checked out. The place was starting to fill up with little children and frazzled looking moms.

I haven't seen a doctor in over three weeks and that's as close to normal as I've been in over a year. I'm looking forward to next week's appointment, if only to confirm my feeling of well being.

I took my last Z-Pak yesterday, much to the relief of my poor digestive system, and things look good. Of course, the storm front rolled through, bringing strange atmospheric changes that set my new allergies off. If it's not one thing, it's another.

Over the last few days, I've noticed that Chris has asked about my GvHD more often than normal. Every day was peppered with questions about how my skin felt, were my eyes bothering me, etc. He has a theory that when my GvH goes into hiding, my immune system is gearing up to fight something scary, like the flu or EBv. This held pretty true during my recovery from the flu. My hands stopped itching about a day or so before my symptoms fully manifested and while my immune system was busy fighting the new invaders, my skin and eyes got a break. As soon as I was over the flu, the scratchy watery eyes and mega-itchy hands returned with a vengeance. My hands stopped itching sometime last week and the cold or what ever it was took over.

This morning Chris was all smiles as he reported that I kept scratching my hands in my sleep. Indeed, they are especially itchy today and my eyes are back to feeling like they're coated in sand. I suppose dealing with minor GvH is definitely preferable to dealing with the scary germs and viruses. I will admit that I miss the days pre-leukemia when I was able to take feeling well for granted and a sneeze was just a sneeze. I'm sure this is the lament of most recovering/recovered blood cancer patients.

Since the little germies have been banished, my appetite has returned in triplicate and I'm eating like a champ. As a result, the scale displays a very ugly number every time I step on it. I'll get it right one of these days, but until then, I'm going to go enjoy something deep fried and crunchy.

The bad weather has finally rolled in and I'm currently watching a sad and dejected Pez languishing by the front door. She's determined to go out and investigate the rain herself and I'm determined that she won't.

The Z-pak seems to have done the trick and my cough is history. A nurse from the stem cell transplant clinic called this afternoon just to check in and be sure that I was taking my prescription. As if I wouldn't. I know that there are non-compliant patients out there who think they know better than the doctors. It boggles the mind.

This weekend was nice and quiet, although I was a bit concerned that Chris was going to have an aneurysm Sunday. I talked him into taking me to a rather large and busy craft store in the hopes of finding really long circular needles for my knitting project. He was on high alert and made sure he always got between me and anyone who might wander down the same aisle. I know that he knows that germs and viruses won't stop at the invisible line drawn in the sand, but it makes him feel better to do something. At one point, I was considering some yarn when the squeal of an approaching baby literally made Chris jump out of his skin. I figured that since I couldn't find anything that I needed, it was time to take mercy on Chris and leave the store.

So, that was it. No scary news to report, which is how I'd like to keep it.