Our New "Normal"

Last night was not exactly restful. Mark developed a fever about 2 am so they had to give him tylenol. Since he could not eat or drink after midnight to prep for the bronchoscopy they had to get permission for a little bit of water to take the meds, which the doctor approved. They also gave him some pain medicine because his back hurts really bad from the bone marrow biopsy and his morning dose of ATRA chemo pills so he would not get off schedule (they are due at 6 am but he could not take them that close to the procedure).

At 9:00 am Mark left for his bronchoscopy. He was nervous because they will sedate him and he has never had a procedure like this or any other procedures for that matter. The procedure went well. He does not remember anything from it. It will take several days to get the results, so we continue to wait. He felt really nauseous after the procedure and got sick a few times. He also developed a fever at about 3:00. The nurses stayed right on top of everything and stayed in contact with the oncologist to let him know of all the symptoms and side effects because some of the side effects of his medications can be serious.

Just to give a run down and to give everyone an idea of our new routine: At 3:00 today Mark had a fever with nausea, a headache, and anemia due to low red cell count. Once the fever dropped to an acceptable level, the nurse gave Mark plasma and red blood cells. The plasma helps his blood clot faster and the red blood cells help the anemia he has due to the leukemia and all the blood the nurses have to take for the lab tests twice a day. He had platelets this morning to increase his platelet count before the bronchoscopy, so they are looking fairly good right now. Once he woke up from his 5 hour nap, we walked 1 1/2 laps around the BMT unit (12 laps is a mile). He thought he could make 2 or 3 laps, but the IV thing started beeping cause it needed to charge. The doctors want him to try and walk 1 mile a day (not necessarily at once, just over the course of the day). So that is our new routine at this point.

I spoke to some friends today about how weird it is that he is always one of the healthiest people I know, and now he has leukemia. He hardly ever gets more than a slight cold due to allergies, much less anything major. Of course, the reason we know about the leukemia so early is an always healthy man suddenly go pneumonia for no apparent reason. Just goes to show, always listen to your instinct (or your spouse, whichever is loudest) and if you even think about going to a doctor...go. If nothing is wrong at least you know, but what if something bigger than you could imagine is going on. A nurse came in earlier talking to Mark, asking him the usual questions and I commented "he is a very healthy person, he just has leukemia", which is true and makes this whole experience even more surreal.

I will admit, today was a rather emotional day for me. Mark was asleep practically all day. For several hours he had a fever and some other symptoms that the nurses were watching very closely and talking with the doctor to make sure he was not developing some of the severe effects of the ATRA medication. It is incredibly hard to sit back, completely helpless and watch someone you love so much feel so sick. It is especially difficult because it happened so quickly. It is also difficult because I know this is just the beginning. This whole experience will get harder before it will get easier, but I know God will help us through it. There are literally hundreds, if not thousands of people across the world (I know at least 1 person in Afghanistan is praying for Mark - thanks Dale) praying for us. I can feel the prayers and I am incredibly grateful.

Last thing, we do not have any results from the biopsy yet. The doctor said it might be tomorrow, or it could be over the weekend, possibly even Monday. All the information they are trying to gather to get a complete diagnosis takes a while to get from the pathologists due to the complicated tests they have to run. I will be sure to post the official diagnosis and treatment plan as soon as we know one.

Thank you all so much,
Amanda