It's Another boy!!!

Well not really... it's just my heart. We had an appointment with a cardiologist this morning and she took an ultra sound to measure its volume and pumping capacity. Did you know that your heart beats approximately 100,000 times in one day? That's 35 million times a year! 

The ultra sound machine also displays red or blue to indicate which direction your blood is flowing. This helps determine whether or not the heart's valves are functioning properly - I'm happy to report that mine are. However, the technician did tell me I was "lungy" because my lungs kept getting in the way, so I started holding my breath. It definitely helped keep my lungs off the screen but I kept wondering if the lack of oxygen would hinder my heart's performance. 

After our fun little escapade on the 7th floor we popped down to the 6th for a respiratory exam. It turns out that I'm great at "inspiring". It's not what you think though, that just means that I can take in a lot of air. I'm also pretty good at "expiring" - but don't worry, that just means "to breath out".

For this exam I got to sit in what can only be described as a glorified phone booth. It doesn't look like much but this transparent confessional goes for $40,000 bucks! I don't know about you, but unless it can travel through time and take me on an excellent adventure, I think I'll go with the Corvette.

After some puff puff give with my new friend Ron we headed up to East 8 for a blood draw. My nuetrophils are coming back - Yes! I'm at 1.0 now (normal and healthy is about 1.8) - so we're getting there. They also wanted to get another mucus sample to see if I still have the flu. In the past they've inserted a suction tube up my nose to get a sample. But today I had to try not to laugh when this guy came in with a sample cup and asked, "You ever do a Farmer Joe Blow?" I almost rebutted, "I believe the politically correct term is Snot Rocket." Instead I kind of chuckled, plugged one nostril and gave it my best shot. I handed him the cup and asked, "Will that work?" Excitedly he responded, "Oh ya, that's perfect!" Wow, I haven't seen anybody that enthusiastic about mucus since Egon scraped some samples from the NY public library (Ghost Busters). 

It was quite a marathon day and we decided to top things off with a spinal tap - yay! It went pretty well (no tickle fits) but my back is a little more sore than usual. After 7 hours at the hospital AJ and I couldn't wait to get home and see our boy - thank you to Kelly and the Weilers for watching him today. He is really starting to get confident on his feet (not to mention chubby in the cheeks). Check him out in his new Thomas the Train Engine PJ's :)

Tattoos and a Facial

Good news, they let me go home from the hospital Sunday night. It was a pretty uneventful stay to be honest. But Monday, that's a different story. On Monday I had an appointment with the radiation team; a preparatory consultation for my upcoming treatment. I am scheduled to undergo six days of TBI - Total Body Irradiation - but before we get to the details on that, lets address this whole radiation vs. irradiation situation. In physics the word "radiation" is used to describe energized particles that are traveling through a medium. "Irradiation" is the process in which an object (in this case me) is exposed to "radiation". From what I've read the side effects of this treatment are extremely irritating, so irradiation is quite a fitting title. Alright, enough of that nonsense! What does all this have to do with me getting a tattoo? Well four tattoos actually...

The TBI takes place in a fairly large room. The radiation machine looks like a giant telephone with an eyeball on one end of the receiver (this is what shoots out the energized particles). During my treatments I will stand in a strange apparatus that kind of looks like one of those home gym infomercial rigs...

"The bones of steel home gym comes fully equip with a bike seat, parallel bars, armpit rests, and hand grips. Be one of the first 100 callers and we'll throw in a custom fit face mask free of charge! So what are you waiting for? Pick up the phone and order your bones of steel today!"


The purpose of this peculiar contraption is to help me stand completely still while they zap me. Apparently the lungs are particularly sensitive to this kind of treatment. As such we fitted a set of lead plates that will hang in front of my lungs to minimize the radiation they are exposed to. To ensure that my lung shield is in just the right place they tattooed a couple marks on my chest and back to ensure it is aligned properly each time. During my treatment I will spend about 10 minutes facing forward and then 10 minutes facing backward. Luckily, I am allowed to bring an ipod and some headphones.

 

After I got my tattoos it was time to design my face mask. I will wear this mask when I have radiation done to my brain - yep right to my head. When chemotherapy was first being tested they made great strides with leukemia patients. Using multi-drug regiments they were able to send the cancer into remission for nearly a year. Sadly however, patients who were seemingly cured returned with cancer in their brain and spine, and ultimately died. This is why lumbar punctures (chemo injected into my spinal fluid) and radiation to my brain are necessary and crucial for my treatment. In order to help me hold still during radiation to my head, I was fitted with a custom face mask. This was done by stretching a hot, wet piece of netted plastic across my face and then letting it dry and cool. Markers are attached to the mask that will be lined up with lasers to ensure that the radiation is administered with exact precision. 

I am scheduled to be admitted to the hospital on May 22nd (this is when I begin radiation) and my transplant is to take place on June 1st. If all goes well I should be out of the hospital in 6 to 8 weeks. I am told that it can take up to two years for my immune system to rebuild and recover. This is partially due to immuno-suppressant medications that ensure I do not reject the transplant. I'll post some more details about the transplant at a later date. For now, I am resting up at home and trying to kick this flu - gotta be healthy for the big day!

 

Help I'm Nadiring!

I stopped by the clinic yesterday because I was running a fever. After some blood work, a chest x-ray, and this really fun procedure where they stick a suction tube up your nose, the PA told me I was "nadiring". After some tedious research (wikipedia) I learned that Nadir is an Arabic word that means "opposite". In astronomy the nadir is the opposite of the zenith, and can also be used to describe the lowest point of a star or planet's orbit.

A cancer patient reaches their "nadir" when their blood counts hit rock bottom. Thus "nadiring" describes that your blood counts are spiraling, and spiraling they were. When I came in my platelets were at a 10, which is super low (I've had counts in the 300 range before). My nuetrophils (I like to think of these as my "fighter cells" because they attack bacteria and infection) were at zero. Finally, my overall count (my hematocrit) had dropped from 33% down to 26% (if I drop below 24% they give me a blood transfusion). The PA consulted with the Dr. and they decided to admit me and give me a platelet transfusion right away.

It was a pretty lonely afternoon - my TV wasn't working, my cell phone battery died, and I had only brought one book. My nurse brought me a new packet the hospital had put together and I read through every pamphlet. Things got interesting when I looked in the mirror in the bathroom. My nose and forehead were red and puffy. As I washed my hands I noticed the rash was running up my forearms and then I lifted up my shirt - yup nasty itchy rash all across my torso too. 

I paged the nurses station and said something like, "I'm getting a little rashy in here". My nurse brought some IV Benadryl and let me tell you that the liquid stuff hits your head pretty quick.  As I'm starting to feel tired and a bit dizzy the nurse gets up to leave and says, "Just let me know if you have trouble breathing." I hear myself say, "Okay."

Okay! What? Not okay, how am I supposed to call you if I can't breathe! I spent the next 60 minutes forcing myself to stay awake so I wouldn't fall asleep and stop breathing - I'm starting to think that "paranoia" is a possible side effect from Benadryl. Needless to say, the rash cleared up within about an hour, and I felt much better when my beautiful wife arrived with a bag things for me.

The nadiring has continued. It might have been all the cheering and fist pumping during the Jazz game, but my hematocrit dropped to 23.3 this morning. I received 2 blood transfusions and with each one - more hives (but nothing as bad as yesterday's). We're not sure why I'm not reacting well to the transfusions, but moving forward they will give me Benadryl prior to each one. 

My nasal culture revealed I have type B influenza - thus the fevers and feeling awful for the past week. The trouble is you can't really beat the flu when you don't have any fighters (nuetrophils). The good news is that they have specific antibiotics that I am now taking that will fight for me.

With me fighting the flu, the date for my bone marrow transplant has become a big question mark. The task at hand is to get rid of this flu and get my blood counts back up. So let it be written, so let it be done! 

Transplant Transformation

Yesterday Marshall had another 2 hour drip of chemo that makes him extremely tired. While he was in the bathroom with Pappa Wheeley, I expressed my worry that I try so hard to hide from him every day to a nurse on the eighth floor. He looked at me and said, "The transplant is going to happen. Your husband is going to get an infection and be readmitted because he will have no immune system. You can choose whether to worry or not, but it will happen".  His perspective comes from talking to bone marrow transplant survivors one year after the transplant, two years after the transplant, and so forth. I tried to connect with him from their angles because as far as I know, he's never had a family member go through it. The unknown. That is what we are embarking on. As much as I have studied bone marrow transplants, read others' stories, watched them, good and bad results--- the conclusion I have reached is that I wish I had a way of knowing all things. Faith is the closest thing I can have to omnipotence right now.



My dad said something that made me cry after he read my feelings of last post: "My sweet baby girl! A very fine line separates faith from fear. I don't pretend to understand it, but I think it has something to do with choosing to follow a compelling voice from deep within that whispers, "Head up, move forward, smile through the pain and uncertainty, and trust in the one who descended below it all to usher you safely home." Your opportunity becomes my opportunity to comprehend a little more clearly the depth of His perfect love. Look, listen, breathe, and know that He--and the rest of us--are very near. All my love, Daddy."


 

I do not think we have officially declared this on our blog, but Marshall has two complete matches who are willing to donate their bone marrow to him. We cannot know anything about them right now. Just that they are male and young. What a precious gift they are willing to give. For the rest of my life I hope to remember the value of a gift and to give only the best. Marshall will be taking 15 nasty pills a day for a few more days this week (besides the ones he has to take every day) and then he will have a few weeks for his counts to recover for the last time before transplant.

Many people have asked me about transplant. Some ask, "Isn't it even harder for the donor than the patient?" They used to actually drill into the bone marrow of the donor to get what they need. Marshall has had this done at least six times to check on the status of the cancer.  The science of a bone marrow transplant has gotten better and now they are able to give the donor medicine that helps them produce bone marrow blasts in the donor's blood (what Marshall will need to graft as soon as they completely kill off his bone marrow) that are collected and centrifuged while the rest of the donor's blood is given back to them through the other arm. In my mind I think of an exaggerated blood donation. The medication can make the donor achy and it may take a few days to collect all they need. I signed up to save a life and you can too by going to bethematch.com. The actual receiving of the stem cells is like a blood transfusion for the patient.  Except they may knock him out with benadryl and other things beforehand to try to counteract an allergic reaction to the materials they use to keep the marrow fresh. It is the preparation that he has to do in order to be ready for the transplant that makes it tedious.

In Marshall's case, he will do three days of a very strong chemotherapy followed by a day of rest. He will then do six days of full body radiation followed by two days of cytoxin. So, in nearly two weeks, they will attempt to kill off his entire bone marrow. Without the grafting of a donor's bone marrow he would never recover. From there it's a wait to see if the new cells graft and if there is graft vs. host disease and to what extent. He can expect to be in the hospital for two months if all goes well. Most survivors I have talked to have stayed anywhere from four to seven months. It's the unknown all over again.

Now we have three weeks to be home as a family (between hospital visits) before he starts the next big step. Tentatively, the first through second week of May he will be going through prep for transplant and the third or fourth week he will be getting a stem cell transplant and a second birthday! Hip Hip Hooray! Side note: our little boy took his first steps alone on his ten month birthday. He is not walking on his own yet, but at least Marshall got to be home for that.

As far as visitors go, the critical time is these three weeks leading up to transplant and a month after he is released from the hospital to avoid infection. Of course, he loves visitors, but if you have been around anyone sick or even feel ill in the slightest please stay away. Here's to skyping, phone calls, texts, and gifts to Marshall on his new birthday! If you would like to skype with him, his skype name is Marshalljfox.