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.

Day 12 A Delight

This morning I met with Dr. Ostranoff  about my current status. After reviewing my latest blood counts she concluded that we should target tomorrow as my release day... TOMORROW!!! Needless to say I'm very excited about going home!

Both my white blood cell and neutrophil counts have rebounded back into the normal range. My red blood cells have stopped going down and are slowing going up. The only other number that isn't really playing nice is my platelet count which still dipped below 50 today which meant I needed another platelet transfusion. I'm hoping that tomorrow's blood count will show some upward movement with my platelet count so that I don't have to continue getting platelet transfusions after I leave the hospital.

My parents came and visited me for most of the day today, which left Carey at home with the chance to spend some quality time with our boys. We've let them know that tomorrow I should be coming home so I hope the doctors don't let them down! They are excited about it and it will be super fun to see them again!

I had a nice visit with my parents today and since my blood counts were high enough and the weather was nice enough we went outside for a bit to enjoy some sunshine. I went around the hospital once with my dad and discovered that my reduced red blood cell count was making it tougher than normal to make it up hills. I'm sure this will change as my new marrow makes more red blood cells.

I've also updated one of my charts to show the progress of white and red blood cells, plus neutrophils. I even tried to add some dashed lines to indicate the 'low' level for each blood count.

You should be able to clearly see the white and neutrophil counts exceeding their respective low level values. It's kind of interesting to see this trough or 'pit' during the transplant process where you just don't have any immune system at all - at least now I've something to work with! It will take a while to fully recover before I don't have to be consciously aware of possible sources of sickness. Until then I will be wearing a mask and using hand sanitizer like it's my job.

I'm so grateful for the many prayers and thoughts extended towards my recovery from this process. I have felt so blessed to have had such an 'easy' transplant. Things really have gone very well and my response has been tremendous to the treatment I've received. I know that God as shown his hand in this process and I want to thank everyone who is contributing their faith to making me whole!

Day 11 Engraftment Syndrome for $500

Last night I didn't sleep as well as I wanted, although most people could probably say the same thing. Since my latest thing these days is 'fevering' that's about the only thing interesting to talk about. The doctors have been treating my 'fevering' as some sort of infection so they're feeding me antibiotics, Tylenol, and some creams for my rashes. None of the tests they've done to identify the source of the fever has turned up anything and given the rash which has extended to most of my body, they have decided to treat it like 'engraftment syndrome' which according to bmtcare.com is "an early complication of hematopoietic stem cell transplantation (HSCT) that occurs around neutrophil engraftment time and is attributed to the sudden cytokine discharge associated with robust engraftment of transplanted cells." So to deal with this they've continued to give me antibiotics but now they're adding Prednisone which is a steroid. I feel like some of my rash has started to go away and I haven't been as feverish today so that's good. I should be happy to have such a robust engraftment on my hands!

I spent much of today fairly alert and fortunately I was able to spend that time with my beautiful wife. She's been such a trooper taking care of the boys on the home front and making the trip here to Salt Lake City to visit me. Things will get even more stressful for her as she attempts to carve out a sterile cavern in our home for me as our two boys do their best to mess up and snotify her attempts. Fortunately my parents are there to help out - I wish them luck! I probably won't be leaving the hospital until next week some time but time is running out!

When that day comes I will certainly be happy to be home and hope that everyone makes it through the preparation process in one piece!

Day 10 Signs Of Life

Today I finally got a small glimmer that this transplant is working - my CBC this morning reported 100 white blood cells! I'm very proud of those one hundred cells.

That was basically the only good news of the day. This morning I finally decided to take action against my hair which had been deserting me at an alarming rate. I asked my 'Patient Care Assistant' to get a razor and shave it all off - so now I'm living the cancer survivors dream of a completely bald head. I must say though, tonight as I was roaming the halls I ran into a fellow patient who complemented me on the bald look so at least a complete stranger thinks it looks good.

Most of the day was spent battling a fever. It just did not want to go away. So far no tests have indicated a source for the fever so I just keep taking all kinds of antibiotics and hope for the best. I've also been dealing with a rash that developed around my central line bandage and seems to have spread but we don't know if it's also associated with some of the medicine that I'm taking. Poor Carey thought that she'd have a fun time chatting with me all day but I basically slept the whole time so she was pretty bored.

Hopefully the fever and the rashes will be going away soon and my numbers will continue going up. Who knows, maybe I'll be ready to leave this place early next week!

Obligatory Goofy Picture

Day 9 Swimming in the Pit

The first time Robert did the transplant 5 years ago they drew us this pit that showed what happened when a person got a bone marrow transplant. They explained that Robert would get a few days of heavy chemo, have a rest day, get his cells introduced on transplant day (that they call his birthday since he will be in some ways like a new born baby), and then... Well, the next few weeks include the severe effects of the delayed reaction to the chemo as it kills all of his bone marrow and who knows what else. Essentially, the typical person continues to have lower counts until around Day 11 or before which is all considered the downhill side of the pit then, around then with the help of Nuepogen they begin to come out of the pit as their implanted bone marrow cells begin to create new Nuetrophils, White blood cells, Red blood cells, Platelets, etc.

Basically, I'm trying to say, he's at the bottom of the pit and he's not feeling the sunshine. Here's some bullets describing his day:

• Rash on his chest
• Fever
• 2 additional sets of platelets
• Caught up on a couple of tv shows
• Barely ate anything for lunch
• Slept for most of the afternoon
• Felt yucky
• Managed to eat a good dinner

The doctor ordered some steroids and antibiotic creams for his rash, some IV antibiotics for whatever infection might be causing his fever, some Tylenol and of course, his usual 3 anti-nausea drugs. Robert also got another slew of blood tests to see if they can track down what is causing his fever. 

Oh, and he has started to lose his hair!

Day 7 Intestinal Distress!

I know this is a subject that is not common or even considered 'couth' but it is part of my world... I've been having tummy troubles today. It seems the melphalan does a number to your whole GI tract and boy has it ever done a ditty on me. There have been some times of abdominal discomfort which has taken me off my 'A' game. This goes with the territory though and so I must fight through the unmerciful bowls of foul-odor.

My parents came to visit me most of the day to let poor Carey have a chance to rest herself as she has been feeling the onset of a cold. This of course would be bad to have my primary caretaker sick.

I hope my parents didn't grow too board with the multiple platelet transfusions I had today. For some reason my platelet numbers didn't want to cooperate. After the first transfusion my platelet count went down so they did another transfusion. Later on, the nurse mentioned that one of the lab technicians said the drop in platelets could have been due to some bacteria so they are going to run some more tests. They didn't think this would be likely since I don't have a fever, but they don't really need much of an excuse to take my blood these days.

I spent a little time gathering some test results and numbers concerning my blood counts and exercise. I put together a couple of graphs showing where I currently stand.

From the CBC chart you can see both the white blood cells and neutrophils have both dropped to zero. This is important because these cells fight off disease. Zero means I don't have any disease fighting cells - please resist the temptation of giving me a wet-willy.

The walking chart doesn't really tell me much. There have been times when my walk was slowed to accommodate conversations or interactions with people, but generally things seem fairly consistent. This matches the CBC chart's red blood cell counts which are headed down slowly but haven't fallen off a cliff. I suspect that if the red blood cells take a nose dive my exercise could be impacted. 

In other news, my Star Wars balloons went home with my parents today and made fast friends with Slate and Aero who took them in as their own. Slate was so happy to see R2D2 that he have him a kiss!

Day 6 Nuepogen Me!

I've officially made it far enough into the transplant for the doctors to start giving me booster shots for the bone marrow that they think might be ready to do something. My white blood cell and neutrophil counts have both dropped to zero which in medical terms indicates mild zombiism. Since it's a mild case there is no need to fear that I'm sizing up your brain for a late night snack, the effects of the melphalan are still strong enough to override any potential desire for nocturnal cranial snacking. The doctors will of course keep close tabs on my zombie index to ensure nothing gets out of control prior to the engraftment of my PBSC.

In other news I had a quiet Sunday with my sweet wife here in the hospital. It was very relaxing and nice to have her by my side.

After she left, the nurses started their probing again but this time discovered my platlete count actually went up instead of down so I didn't need another transfusion! Things are really starting to go my way!

Later on I had a nice visit with Rich and Matt (Rich has Multiple Myeloma too and Matt is and old mission buddy.) It was fun chatting about about our cancer and other manly things.

My exercising has still been going well but I'm not sure I can really draw and conclusions, maybe tomorrow I should crunch some numbers and see if anything looks interesting.

Day 5 Coasting

So his counts are at Rock Bottom or close to that right now, which is why they are so strict about not having any visitors that are sick. He's really just coasting for the next 5 days or so until his bone marrow starts to produce new nuetrophils, white blood cells, red blood cells, platelets etc. He's already had 3 platelet transfusions. Tomorrow they will start Nuepogen shots to help his bone marrow start producing faster, but it will be a few days before they see results.

Coasting

But today wasn't about counts, it was his birthday! We celebrated with his one request of a visit from the boys. His parents and sister Rebecca also came up. Robert went on a short ride in the wiggle car with Slate and showed off his Star Wars Balloons (huge R2D2 and other balloons - Thank you, Shannon!). Both boys were happy to be there and Slate cried a little when leaving. It's sad they have to be without their dad for a few weeks, but the good news is this should hopefully put him in a longer remission and make it totally worth it.

After the time with the boys, he was feeling nauseated and exhausted, but after some meds he eventually started feeling a little better. We even got a little streaming movie going on this afternoon.

Day 3 Perfect Storm of Drugs and Socks

Somehow the doctors/nurses got the perfect mixture of drugs into me so that I was able to function in a mostly alert state for a good portion of the day. My sister Rebecca got to enjoy this experience as I assembled the remains of the fearsome Darth Vader all while chatting about 'things'. We even got permission to leave the building on this bright and sunny day so I could really let my 'freak-flag' fly. I received many compliments on my Superman socks and only a few squity-eyed stares wondering what was on underneath my brought yellow hospital apron. No need to worry though - was wasn't wearing it 'hospital' style.

As an extra does of excitement I got Rebecca to make a run down to Cafe Rio for some non-hospital food and it was delicious! Thanks!

I don't know what the future holds but today wasn't too bad. I'm currently waiting for some more drugs to kick in so I can go to sleep. It's not as easy as one would think to slip gently to sleep with a little nag in your tummy saying 'maybe it would be cool to throw up... just a little.'

I've been able to get out and exercise and do a few active things which according to the nurses is good - one day in bed is an additional three days of recovery. Just keep those drugs coming and I'll stagger all round the hospital.

Other things of note today, my platelet level finally dipped below 50 so I got a bag of donor platelets. I'm thankful for all those out there that take the time to donate blood products so that people like me have a chance to spend a few more years living a good life. Keep on donating even if the movies you watch while donating and are very sad and make you cry and you have to rely on the nurse to wipe your tears. It's all worth it!

Day 2 Zamboni

Today was mostly a sleeping and nausea day again despite the fact that I managed to convince Robert and the doctor into giving him third anti-nausea medication. :( It makes hanging out at the hospital kind of lonely when he sleeps most of the day, but I would much rather him sleep then feel bad while he's awake and I have tons of things I brought to watch or do "While he was sleeping".

He's also had congestion in the morning and an occasional productive cough. They swabbed him for some typical viruses and did a chest x-ray, but they were both clear. He must have something they are not testing for. So far it's not too bad though, so that's good news.

During his up time we went on one of our walks, which means for him being fully covered in an large smock and mask. Today we had to move over to keep from getting run over by whatever the equivalent is of a floor Zamboni. I wonder what the job description for that job looks like. Must be able to drive safely in hallways without hitting patients or gurneys.

Robert did have a few other times (less than 30 minutes each) today when he felt good enough to watch part of a movie or play with Legos (Adam and Amanda's Darth Vader gift). I think the downside to the Lego playing was that if one of the small pieces would roll off the dinner cart to the floor we had to go searching so the cleaning lady wouldn't sweep it up and Darth wouldn't be missing something important, like say a hand.

Day 1 Superman

And his counts start to fall. Today was not a fabulous day for Robert. The doctors told us today and tomorrow his counts (white blood cells, red blood cells, neutrophils, and more) would start to drop quickly, continuing to drop through the beginning of next week. He started out with a little exercise, but mostly remained nauseated and exhausted throughout the day. He was feeling particularly bad right before his daily doctor consult, which was actually good. I was able to talk him into regularly scheduled nausea meds, but still he needed a few extra drugs through an IV to get his tummy feeling better. The good news is when I talked to him tonight on the phone, he was tired, but felt like his nausea was under control.

On the bright side, my siblings and parents dropped off a giant care package to the house tonight full of all sorts of goodies, including Superman socks for Robert. We feel so loved and not just by them, by all of you. We know you are all praying hard and wishing for the best. When you wonder what you can do, you can rest assured that you are already doing it. Thank you! Loves!

Day 0 Rebirth

Today was the big day - the day I finally got my blood stems cell back into my body to rebuild my blood system. While I was pretty excited to receive a young man's blood stem cells, all the extra drugs they gave me made me feel and smell like and old man. I slept through most of the excitement and as a bonus the preservative thy use to prevent the blood stem cells from bursting when frozen smells like creamed corn - a favorite of old men with no teeth.

I'm not sure I can really feel them kicking in yet, they might be a little bit sleepy from their long cryogenic sleep but hopefully over the course of the next few days they'll find their way home into my bones.

Carey came up this morning to sit with me during the procedure, it was probably a little too boring with me sleeping most of the time but I appreciate here support and all the support that I'm getting from my friends and family.

At this point I just sit back and relax as my blood counts drop and I feel even worse and then wait until the numbers start picking up again. It should only take about two weeks, so not too bad I guess.

So far my exercising has been okay, no real changes yet but I suspect that this week that will change.

Day -1 Rest and Relaxation

Today was my official rest day - despite that they still sneaked in a dose of dexamethasone so I'm not sure I can really count this as a total day of rest. Still though, it was nice to not get any more chemo and even better they have detached me from my IV pole of fluids so I'm no longer tethered! It is so much better to not have to drag that IV pole everywhere I go - don't know how long this will last but I'm hoping I can stay detached for most of my stay here.

In general the day has been pretty tame. Carey came up in the morning to watch General Conference with me and stayed long enough to get the report from Dr. Gaby. My sister Rebecca came into town last night and is planning on helping us out for this entire week - so this morning she watched the boys while Carey came and visited me. When Carey got home Rebecca drove to the hospital to spend some time with me - it was nice to chat a bit with her, and we even took a walk outside while I still can.

Tomorrow is the big day! They should be serving up a couple of bags of PBSC tomorrow in the late morning to early afternoon. That will be considered my 'birthday' and the day I measure from for my 100 day milestone where things are mostly back to normal but still be careful.

I've been trying to manage my minor tummy troubles with Ativan lately and feel like that's helped some. I definitely feel my appetite slipping but I'm still managing to get some decent intake. My walking is still going strong and I'm planning on continuing that as much as possible. I know I'm in store for tougher times before things start getting better so I must be prepared.

Day -2 Partying Like It's 1999

Day -2 is now all but in the history books. It was fairly uneventful consisting of a lot of sitting around, walking around, talking, watching General Conference, and then the actual melphalan with its accompanying dexamethasone (a steroid) and lasix (a diuretic.) This time I had my brother Adam and his wife Amanda here with me for the fun - thanks for partying with me!

Yesterday, the nurses said it was OK for me to go on a walk outside. I thought this sounded fun even though I'd still have to wear the mask, gloves, and gown required to leave my hospital room. During this walk, a knob on my IV pole fell off and Carey and I stopped to pick it up and figure out where it belonged. After some searching, we decided that we also lost the nut that belonged to the knob and so we looked a bit for it but came up empty. Today I also got to go outside for a walk and wouldn't you know it, I found the nut on the complete opposite side of the block! It's just non-stop fun around here!

So far the exercising has been going just fine. I've already gained a reputation for being a super-walker. I'm not sure how long that will last but now I've a reputation to live up to.

My stomach has been feeling a little off most of the day, nothing too bad but perhaps an omen of things to come. At this point I'm done with the chemo - tomorrow is my day off and then on Monday I get my PBSC (Peripherial Blood Stem Cells.) Monday marks day zero, the day my blood system is reborn with PBSC preserved when I was 39 making my blood system that of a man 5 years younger than I am now. I'm really looking forward to feeling five years younger! If I do another one of these in five years it will be like winding my blood system back ten years! It's almost like the blood fountain of youth!

Day -3 Let the Party Begin!

Carey and I checked into the LDS Hosptial Bone Marrow Transplant unit this morning bright and early at 8:30 am - no small feat when you toss in the task of getting two small boys ready and dropped off at the babysitter. We weren't too sure about the schedule for today, but we had a vague recollection that the chemo would be administered around 4 pm. Once we checked in and were introduced to our nurse we learned that the first item on the schedule was getting hooked up to IV fluids. The purpose of these fluids was to prepare my body for the process of eliminating the chemo from my system quickly and efficiently with the aid of 'Lasix' (which sounds a lot like Lasik only no lasers and more toilets.) I can firmly attest to the efficacy of the combination of liters of water (laced with "Sodium Chloride 0.9% w/v", whatever that is) and Lasix - this combo is the #1 reason the chemo was flushed out of my system so quickly.

Since getting my first dose of melphalan has been accomplished, the MelphaLAN Party has officially started! I don't know what a Melpha is but I'm ready for the LAN Party!

For fun I thought it would be cool if I tracked my pseudo-fitness while I'm here - this will consist of tracking information about my walking speed and heart rate. I have footpod and heart rate sensors which I will use to record some of my walks around the 8th floor here in the BMT. The loop is short and not really safe for speed-walking so the numbers won't be too interesting, I mostly want to see if the chemo affects even a simple walk. This won't be very scientific, but I'll probably try to post some results as they accumulate. I took my first walk tonight just to see if my sensors would work and logged 0.63 miles in about 20 minutes with a moving average of about 2.11 mph and an average heart rate of 103 bpm.

Pre-Transplant

Here is an abbreviated summary: In the summer of 2015 Robert found out his cancer numbers were going up and he was coming out of remission. In September we went in for a bone marrow biopsy to confirm that. We also got some other bad news at the time. The test showed an additional chromosome marker that could indicate he had MDS (something that could turn into a second form of cancer Leukemia). This meant that in order to treat both the Myeloma and the MDS he would need a donor transplant. Donor transplants are very dangerous; They have only a 50/50 chance of survival and include several probable health problems during post-transplant, so we've avoided them thus far, hoping they would come up with a better option.

In October, the doctor ordered another bone marrow biopsy (They drill into your hip and get marrow and bone samples.) so they could get a more detailed lab report with additional tests. When the tests came back, the additional chromosome marker indicating possible MDS, had disappeared! When we asked the doctors about this, they had no explanation. They said these tests couldn't be faked, but we know that it was divine intervention and the many faith-filled prayers for us. This was Miracle #1 in his recovery and meant that he could do an autologous transplant (using his own marrow which he had already harvested a lot before his previous transplant.). Hooray! While the autologous transplant is also not very fun, it is certainly more safe than the donor transplant.

In December Robert started a pretty intensive chemo regime. He was able to still work, but the side effects of the chemo certainly made it harder on some days. Later, in the spring his m-spike (an indicator for his type of cancer in the body) got to 0. Great news! Zero does not mean he doesn't have cancer anymore, just that it is mostly low enough to be undetectable, and that is good news because Robert's numbers had never been this low before, even after the transplant last time. This was Miracle #2.

Then on Easter, many family and friends fasted and prayed for him. We very much feel all your love and know the Lord is helping us! This week, following the holiday, Robert, met with many of the staff at the hospital to prepare him with what he can expect in the way of medicine, sanitation procedures to keep him safe while he has no immune system, dietary restrictions, and a host of other things he can expect with this second transplant. Tomorrow he will go in for a central line, straight to his heart that they will use to give him heavy chemo "Melphalan", thus the name of the blog. Although Robert prefers, "MelphaLAN Party". On April 1st, he will check-in to the hospital for at least 3 weeks. We will keep you updated. Thanks again for all of your support!