My name is Jon. I have a wonderful family (4 kids, amazing wife, huge extended family). I have a great job, great friends and...cancer. I was diagnosed with acute myeloid leukemia (AML) in September 2010. On May 4th, 2012 I received a stem cell transplant at Mayo Clinic in Rochester MN.
This will be a brief update. I will have more to tell tomorrow. Things are still going ok here.
About a week ago I had a few days with no nausea and thought my appetite was coming back. This week was a bit of a setback. Nausea returned in a big way. Some new meds seem to be helping with managing the need to spew, but my appetite is gone again. My intake consists of watermelon, cucumbers and carnation instant breakfast (milk chocolate) drinks.
I would like to tell the folks at Carnation that if not for your drinks... I'd be in rough shape now.
It is possible this nausea is a symptom of graft vs host. So tomorrow they are going to scope my upper GI and biopsy if needed. It will be good to have answers. I don't quite understand why they have to go in rectaly, but it is probably Mayo just doing a thorough job like always. (ok... So maybe it is not done that way)
I'm down to 235 pounds.... If anyone is keeping track. I've stopped taking the magnesium pills. I tried to tell everyone that I'm just not absorbing those pills. Now that I am on the self infusions, my magnesium is stable. Now, if only we had done that a month earlier.
I'll add more tomorrow if anything comes up. Good night all.
So last year I was in the hospital and the team from work sent me a birthday cake. Here is that cake (right). Yes that is Richard Simmons.
The text says "Hang in there. Keep on Dreaming"
I thought it fitting that I should provide them a cake this time around. So embracing my new German DNA I put this together. Hyvee in Brookings did a great job... It turned out awesome. Gotta say I am looking pretty good.
I am told there were some awkward looks when it was picked up from our front desk. I am also told I am quite tasty.
So suddenly last Thursday most of may nausea goes away. I just woke up and felt pretty good. Other then that. Not much has changed. I have has some minor nausea the last couple of days, but a lot better then before.
The Doctors say I am doing exceptionally well. I still go into the clinic twice a week. but the visits are pretty short. I have this sunburn looking rash on my arms and upper back that has just come recently. So i guess that will be a discussion topic for tomorrow.
i have has a bit of muscle pain earlier in the week... mainly in my calf muscles. But that was a ton better today. once she herd I felt better my mother (who is my caregiver this week) tricked me into going for a walk. So I did more walking today then I have done for a while. Not much soreness so she'll probably keep nagging...
Rochester is an interesting town. there is a lot of pride in their city here and there always seems to be a bunch of things going on. the surprising thing I picked up on is that Rochester is smaller then Sioux falls by about 45,000 people. For example... every Thursday they block off some streets downtown and have something they call Thursdays on 1st and 3rd. there are probably around a hundred food vendors and booths at this event. they do it every Thursday all summer.
We've been able to sample some of the food that the restaurants downtown offer. If fact the fish and chips from Newt's was so good. we went back to the real restaurant on Friday for more. This week is also Rochester fest with a bunch of food stands and events going on. this event feels more like a fair. So my lunch today consisted of cheese curds and onion rings and little bit of a corn dog.
I still have an exceptionally small appetite. That may not change until they take me off some meds.
The kids and Andy were here for Fathers Day and my birthday. It was tough getting a room that weekend so I put them up at a nice old hotel downtown (Kahler Grand). the novelty of staying there is that the indoor pool was on the roof with a dome over it. Kids got a kick out of it. When Sat morning turned rainy we took them to a place with a bunch of inflatables and they had a blast. We learned Jonah has no fear and was following the girls everywhere he could. I don't know what was funner. Watching him climb everything or having Andy annoyed at me for letting him do it. We also took the kids to Silver Lake Park in town to feed the geese. actually we went twice and Nevaeh got a little scared by how may geese she had around her but she asked to go back the next day and we did. She did much better then. We took them to a giant playground and they had a great time there as well. But, the weekend went to fast and they headed home mid afternoon Sunday.
You may notice an extra young lady in the photo. Alex watches Alivia and Nevaeh in the summer so we don't have to put them in daycare. The girls love her and Andy brought her along to help with the kids during the long drive and hotel stay. You will never meet a more responsible 14 year old. She is very special to our family.
In all I am doing fine. My magnesium is holding as long ans I am doing my self infusions. Nausea is better... but does remind me every now and then it's still there. My energy level is increasing. Hair is even hinting at growing back.
I'll leave you with a a pic of Jonah trying to keep up with his sister's in the pool. He is extremely quick to pick up on things. Grandma had him kicking and swimming all over. Note: I have the same facial expression when she suggests we go for a walk... But I think he was having fun.
So there has not been much to tell lately. I continue to do pretty well. Just some lingering stomach issues and a mild rash. Both of which I think are being caused by the meds and not from the actual transplant. In other words, no Graft vs Host symptoms yet. Keep in mind we should see some minor GvH issues, but it's early and they have me on drugs to prevent it for now.
On to the good news, good news...
Last Friday during labs they ordered a couple of tests to check what percentage of my cells were my cells and what were the donor cells. There are 2 tests one for t-cells (immune system) and a different one to check the platelets, white blood cells and red blood cells. 100% of my blood cells (platelets, WBC, and RBC) are donor cells. It can't get any better then that. 90% of my T-cells are donor cells and 10% are mine. This is to be expected since I am on immuno-suppressant drugs. When they wean me off those it will go to 100% donor cells.
So this is good stuff. Day + 38 and donor cells are doing their job.
In other news... I had been having to go in for almost daily infusions of Magnesium. The tachrolimis causes me to lose Magnesium. This would take anywhere from 1-4 hours and kept me tethered to the hospital. On Saturday we started "home" infusions. I get shipped a bottle of magnesium and saline, and can infuse myself each day. It is very easy. And the best part is no more hospital. I have transferred back to the clinic and only go twice a week now. Mondays and Thursdays.
Only down side is I seem to be a little sensitive to IV magnesium. I bothers my stomach a bit... but heats me up (fells like I am cooking from the inside out) and causes sore muscles or discomfort I have to be a bit more significant. We're experimenting with when to do the infusions to avoid this. I am thinking we'll probably start doing them at bed time. Hopefully I can just sleep through it.
We'll see. The magnesium is the only major complication I have at this time and it really is minor compared to what others are going through. I credit all the prayers and good vibes for how I am doing so far. It's all been good news...
Sorry for not posting for a while. There has not been much to tell. Each day is pretty much the same. I go for my appointment at the hospital at 10:30 each morning. It usually takes 30-60 min. I get blood drawn, vitals taken, chat with a Dr and leave.
Most days I get called back in the afternoon becasue my magnesium is low. So I have to go back for 2 or 3 hours of IV magnesium. My magnesium is low becasue of the Graft vs Host drugs I am talking (tacrolimus).
Andy is still here with me for another week. Tuesday Andy's mom Marsha, who has been watching the kids, brought them to Rocheter to see me. Andy's Aunt Lorna assisted on the roadtrip. It was wonderful to see the kids after a month away. They grow fast. Layla probbaly the most this time. Jonah's personality has changed... he knows how to pull his sisters (and Andy's) strings.
We had a good few days with the kids, it think they had a lot of fun. I am missing them again. I am bothered that by the time I get back...they will be ready to head off to school again. Missing the summer (again) is very frustrating.
Next week I am transitioning from an outpatient of the hospital back tp the Mayo Clinic. This means I won't have to to daily hospital visits any more. I guess that means I am doing pretty good. I am feeling pretty well. Appitite is still very small. I have to make sure I drink enough fluids (which has been hard). I really think my stomach troubles are a result of all the meds I take. Just thinking of taking my pills sets off my gag reflex.
Maintaining magnesium is the biggest issue now. I am taking 3200mg (8 pills) of magnisium each day and I still have been needing to get IV magnesium. I am unsure how we manage that now as I transition to the clinic. Good news is this is very common for people on the regimine I am on. So it is no big deal.
No Graft vs. Host yet. I've had a mild rash that I suspect is caused by meds and not GvH but treatment is the same, steroid cream. Just a mild itch and kind of comes and goes throughout the day. I am at day +29 and they say this is generally when GvH starts showing up. Watching for stomach issues or skin issues on my hands or feet. Always monitoring temperature to look for infections.
The great news is that my numbers are really good. I don't think I mentioned them much, but they have recovered very well. In fact, they are all back in the normal range (just barely). I had the impression the recovery might be longer, but they came back pretty much as quickly as all my other round of chemo.
At some point I will have a bone marrow biopsy to make sure these are my donor cells doing the work and not my own.
I feel pretty good. And though I am out of the hospital, I have to limit my time outside. Sunlight can bring on GvH. I need to avoid infections and I still tire easy. This all means I am not leaving the house much. I expect that to improve as the weeks pass. (except the sunlight issue). I am feeling pretty good though.
We pass the time watching movies on my xbox (netflix) or going to the movie theater at off times (to avoid people). Andy cooks meals most times, but we've tried eating outa few places so I can get red meat or when we just need something different. There are a few BBQ joints in town I am eager to try as soon as my appitites inproves.
My weight loss seems to have leveld off. I only lost 25 pounds and it seems to be holding there. It would sure be nice to keep it where it is.
Bottom line is I am back to feeling pretty good again, so it gets frustrating to be stuck away from family and friends. I'd rather be fishing, camping, or anything else rather then waiting for my next Dr appointment. But I can;t complain really. The care has been outstanding. It all seems to be working. I'm almost 1/3 of the way done.
If only we could do the rest of it in a montage...
