Tale-Tell Numbers

What his number tell us and what they don't:

We met with one of the doctors at LDS hospital for Robert's "exit" interview yesterday. Exit simply means they are turning over his care to his regular oncologist until the 100 day mark. (Where he will have more tests and determine next steps.)

The good news is that his numbers are great. He's at low normal or closeish to normal in most categories. A few of them are not normal yet i.e. red blood cells (tiredness - tendency to take long naps daily), but generally if you were around Robert, he would seem like his usual self. Even the numbers that represent his immune system appear to be normal, but according to the doctors those cells aren't normal yet. Apparently, it takes at least a year to get your immune system back and right now his immune system is similar to that of a newborn, thus the seclusion that is currently our life.

In the next few months, when his nausea starts feeling better and he doesn't need to rest as often, he'll probably go back to work. I'm pushing for a couple of weeks of working from home so he can clock out occasionally if he needs to rest and especially so he can stay away from anyone at work that might be sick.

Overall, his exit interview went really well! The doctor was very impressed that he'd already been on a hike and a bike ride. He did get shut down a little though when he wanted to do yard work (any yard work) this summer. The doctor reminded him that his body couldn't take the mold and fungus in the dirt and grass and that he really didn't want a case of fungal pneumonia (yuck). I guess not.

Oh, and he's not allowed to drive on one of the medications that he sometimes takes for nausea. (Oops, he drove us to the hospital for that meeting). I'm not surprised he isn't supposed to drive. He tends to be chatty and a little goofy when he's on it. He told the doctor that he drove really well when he was on it. She said, that's what people say after they've had a couple of drinks. :)

Anyway, we are happy to have him around. We've had a kids movie night about twice a week lately and Slate thinks he's in heaven.

Here's a completely unrelated to this post picture of the boys bathing tonight.

Lowered Expectations

Going into our Monday meeting with the doctors we thought we would be getting all kinds of good information - the fact that I forgot to not take my Xarelto the night before should have been an omen for the day. When we got to the hospital, we quickly realized that our meeting that day was a simple one week check-up to make sure things were still going well and to see if I'd be OK to get my central line out. Having forgotten to hold the Xarelto the night before, we knew the answer to that question - no, the central line was not coming out that day. Instead, it was scheduled for the following day in American Fork. As for the meeting itself, we met with Peter, a PA for a bit for an initial evaluation, then met with Dr. Asch. We had a good visit with both the PA and the doctor but it was mostly a chance to talk about how things are going right now. We won't really find out what will happen with maintenance chemo until we've done the 100 days tests, so I'm just going to have to wait till then to find out if I'm doing more chemo.

On Tuesday, I drove myself to the AF Hospital to have my central line removed. I got in pretty quick and it was a fairly casual experience. I changed into a hospital gown and then followed a helper back to a room where I laid on a scanning table. The doctor numbed the area up then started trying to break the central line free by snipping some stitches and yanking on it a lot. It must have been a little stubborn because it took a little while for him to pick at it enough to get it free. Once it was free, he pulled it out and an assistant put some pressure on my collar bone to prevent excessive bruising. It was actually a fairly quick procedure requiring no sedation. Afterwards I got up and walked out to the car and drove myself home - free at last!

As it turns out, I've become allergic to pretty much every procedure they do at hospitals. The day after the removal, I started noticing an itchy rash in the area that they cleaned with some sort of magical orange solution. I've been dealing with this rash for the past couple of days and it's not been fun. There was already a rash in the area of my central line and now it's moved to the area that they cleaned which includes my neck and right shoulder. Hopefully the irritation will subside soon and I'll feel a little more comfortable.

In the mean time, I've been spending a lot of time with the family. One of the activities that we've been trying to do each day is to go on a walk as a family. Today as we were walking, Slate rode his bike and about every 200 feet he had to stop to 'transform' into a dinobot by lifting his bike into awkward looking positions. It was pretty entertaining to watch (and listen) to this transformation. He's been pretty interested in transformers lately so I'm sure that's what is fueling his desire to transform.

Additionally, Slate and I have been working on building Ecto-1 in the form of Legos that my sister Shannon sent me for my birthday. It was a fairly complex build with over 500 pieces so we stretched it out over a few days. Slate helped a little, but I did most of the work. Slate was pretty excited to play with the car today after we finished it!

Still Over 50!

Before I left LDS Hospital, they scheduled me for visits to American Fork Hospital for Monday through Friday to check my platelet count and then scheduled me to visit LDS Hospital on Saturday and Sunday to check my platelet count. I foolishly thought that because I held steady above 70 for two days that I wouldn't need to go to LDS Hospital - well, I got a call on Saturday asking where I was and when I informed them that I was 'all good' they informed me that I still needed to come in on Sunday to get checked. This morning I dutifully showed up at LDS Hospital to get my platelets checked at 8 AM (not sure why we scheduled that so early...) and my count was 72, so I'm 'all good' after-all. I think this is good news, my numbers all seem to be where they need to be and so for my appointment tomorrow I'm really hoping that they will remove my central line.

For those not in the know, a central line is a simple device that the doctors embedded into my chest that has three lumens (little connectors) connected to a tube that is burrowed under my skin and into a large vein in my neck that leads directly to my heart. This device makes it easier for nurses to get blood samples and hook up IV fluids. This device is also extremely annoying and irritates my skin. On the bright side, it makes me feel like either a soldier with medals permanently pinned to my chest or some sort of cyborg (with medals permanently pinned to my chest.) Anyway, this is something I really feel like I need to get off my chest.

Besides the possibility of removing my central line tomorrow, we'll also be visiting with a doctor to discuss the transplant and future plans regarding maintenance. It would be really nice to not have maintenance but I'm not holding my breath on that since last time I had two years of maintenance.

Other than that, as a family we've been taking it easy, staying away from as many germs as possible. Carey has been taking wonderful care of me which has allowed me to take multiple naps per day to rebuild my strength and recover. She's been taking the full load of taking care of the family and has been amazing!

Over 50

He's been over 50 platelets for 2 days now. Hooray and thanks for the prayers! That means he hasn't needed transfusions the last few days, that we didn't need to drive an hour to the hospital that can give us transfusions on the weekend and that he's improving. Happy day!

Robert still spends a good portion of his day sleeping and the rest of the day he pops in and out of our life with a tired / tummy-achy face, but we love to see him. We are hoping in the next few weeks we will get to see more and more of him with a bit more energy.

Monday is a big consult with one of the eight Multiple Myeloma doctors on the team to let us know what they all think, let us know if he'll need to go on maintenance chemo and answer any questions we might have before they hand us over to his regular oncologist. If everything goes well with his physical that day, they will also take out his central line, which should make him a bit more comfortable.

Robert's family left us yesterday and I certainly couldn't have done the last few weeks without their help. Thank you to his sister and parents for all the tireless hours they spent helping with the kids and the house. And thanks to all of you for your support from wherever you are. We love you!

Another Day, Another Transfusion

It would appear that my 39 year-old PBSC are taking their sweet-sweet time making platelets. It seems silly, after all they're just platelets (e.g. little plates - not even full sized plates!) Personally, I think my blood system just likes the extra attention - maybe it's just a little immature, it's only a couple of weeks old after-all.

Unfortunately, it seems the platelets are the only interesting thing going on with treatment - everything else is centered on preventing me from having any fun - like going outside to help my dad figure out why our gutter drain-pipe is clogged, going outside to critique the guy mowing our lawn by holding up signs giving him a rating of 1 - 10 on each aspect of the lawn mowing job plus a final overall score. This of course is just to help him achieve his best and is in no way related to my belief that I should be the one mowing my own lawn.

I have to admit that I might not be totally up to actually completely mowing my entire lawn before it needs mowing again. Somehow I lost a lot of energy in the whole transplant processes.

My family has been really good to me, letting me take many long naps. While they find it hard to believe that eating a bowl of cereal is something that can really wear a guy out, they're being patient and letting me get my much needed rest.

I keep feeling like I should be able to do more during the day, even be able to stay up long enough at night to watch a TV program with my family, but so far I find it difficult enough shuffling through the house eating the occasional morsel (non-brain) in a zombie-like trance. I'm sure once those platelets come in and I've built up a little more strength, the world will open to me and I'll be able to tackle truly awesome tasks like folding laundry, changing diapers, sweeping floors, and tickling little boys.

Platelets and Padawan

So I was kind of hoping Robert might be able to make the blog today since he's entertaining in his anecdotes, but leaving the hospital and facing the big bad world is wearing him out. This morning he wanted to jointly go on a walk for his required 30 minutes of exercise and since his parents were still in town it gave us the opportunity to see the valley at the cusp of the day. Really it was lovely. Then he was off to the hospital to get his platelets tested to see if his body had started to produce. Long story short and 3 visits to the hospital later, we will say his platelets did not go up and he had another transfusion. He spent whatever other parts of his day and evening there were left... sleeping. I think the meds he is on, low blood cells, and the winding down from his heavy Prednisone dosing is knocking him out. One of the things we really need for his recovery is his platelets to come in so that he doesn't have to get daily transfusions and trips to the hospital. If you are wondering one thing to remember tonight, it is to Pray for Platelets . Anyway, we are so happy to have him home!

One little story that I left off yesterdays post, in case Robert wanted to share it himself was about our little Aero. Aero has been taking his time moving from crawling to walking, even though he's Speedy Gonzalez on the crawl. I could tell he was ready for walking the past few weeks, but have been holding back really pushing him to do so, since it would be nice if Robert could be there for his first steps. Well, it turned out to be such a sweet moment. The child who had hardly taken more than a step or two on his own, took several steps that day back and forth to his Da-dee.

Home

It was a long day, but Robert finally made it home! :) He still has to get his blood tested daily to find out if he needs platelets until his body starts producing more and he has a year before his immune system is fully back, but he's home. More information about being home to come. For right now, good night and sleep tight.