This is a personal post more than a health update, but its hard to separate the two, and the health update comes first.

Viruses keep coming, some scary, some painful, some been there before done that. I have weathered these viruses again and again. I will continue to fight them with all of my strength. To cap off the latest two, I have for the past 6 years had viral polyps on and around my vocal cords. Every two years I go in and have CO2 lazar surgery to remove them, because they are slow growing. Not anymore, because I have no immune system. On July 5th I had a tiny one on my vocal cord, but I could talk like a normal person again. Let me tell how wonderful that was. It had been 6 years since I could actually sing. I love singing along to my music and dancing around with my kids. It was joyous. Today, I can barely talk, but right now is not time to go in and surgically remove them. Its a watch and wait situation, which seems like the going plan these days in my medical treatment.

Almost two weeks ago I also developed Shingles. Its painful. For me it was at first like I pulled a muscle in my back and each day it grew down the rib to the front of my chest (yes, only one… I think I am lucky that way from what I have read). Because I have been on “prophylactic” anti-viral meds from the day of my transplant, I seem to have missed out on the pox part of the Shingles experience. Now I am taking heavy duty anti-viral drugs once again to knock down this virus.

I say knock down, that is an important distinction between viruses and bacteria. Viruses go dormant, you never really get rid of them, or it is rare. Bacteria you can kill with antibiotics. I have been fortunate so far. Even though I have had 5 viral infections in the past 3 months without a break, we have caught them early, treated them accordingly and I have fought them off. This is something to be thankful for. In the first year following a transplant the #1 killer of transplant patients is infections, followed closely by GVHD.

These viral infections do affect me. I am weak physically, and mentally they are taking a toll too, which does not help. Anyway, as I said before, after each one I have to start all over again, like I was after I got out of the hospital way back in May. While my donor cells are finding a balance with my body, all the extra work my body is doing is not helping me grow new blood cells (that is a hypothesis). One of my questions for next Monday when we go to St. Louis and see my Doc. My blood counts have slowly improved and I am now stable and out of the danger zone. Platelets are bouncing around the mid 50s, Hemoglobin is around 11, and white cell count is “normal”. But remember that the normal is counteracted by the immunosuppressing drugs I am on.

That is the Health news. On Monday since we will be in St. Louis, yesterday was my last day at work. I was terminated from my job for health reasons, because I had to go on Long Term Disability (which is misnomer, because whenever you get well enough to work they cut you off). Side note: What does that really mean? Well? As soon as I am just Well enough to work, I have to go back to work, with no transition, no job waiting for me. They just cut you financially off. Two things that piss me off, one is financial and one is health.

I just spent 6 months without a paycheck and we are broke. We depleted all of our savings and the wonderful donations that you all have given us. To be financially cut off again is more than a hardship on my family. Unless I get a job immediately we will be financially screwed. Oh well, family and health are really more important anyway.

But its the health issue that I am really concerned about. Just being well enough to go back to work is not the same as being WELL. No longer will I, or any cancer patient, be able to fully devote time to healing their body. For me healing my body is not a passive ordeal. People who approach healing and becoming well from a stem cell transplant passively, die. That path is not for me. I have been and will continue to actively enhance and do everything in my power to heal my body. But just at that point when I will be almost Well, they yank the rug from under my (our) feet, so we never FULLY heal, since most of us will be “forced” back to work, without fully healing.

This makes no sense to me. To spend all that money to get us almost there and then place you back in a stressful situation once again, which ultimately will cause your body to become unwell and you relapse. If you look at the statistics and look at what happens to transplant patients, then the number one killer after two years is relapse. Which means the cancer comes back and kills you. Many transplant patients go through a second one, but the odds of survival are really, really low. And I’m not doing this again.

I will have to balance what is best for my survival against what is best for my family’s well being. Losing everything financially, is not beneficial to my family. At the same time, losing me for the family is just as detrimental. Its a true Catch 22. Damned if you do, damned if you don’t. The hospitals and doctors don’t think beyond their areas. This is a societal issue and policy issue that the medical field is mostly blind to. They don’t look at the big picture, they refuse to look holistically at healthcare. They only think about their specialties and saving money (which by the way they don’t).

Do you realize once you are released from any cancer related treatment plan, you are left alone, with the only support coming from small groups of people who share their stories and what they do to help themselves. The medical establishment does nothing to help you to heal (aside from giving you pills) to fully heal and recover. That is my experience, I am very sure it is 99% accurate for 99% of cancer patients. One reason is that insurance companies won’t pay for anything. The other is once again, doctor’s don’t think holistically, at least not for cancer patients. Oddly, if you tear your ACL you go into physical therapy until you are good as new (now that is an assumption based on football, but those guys earn millions of dollars each year and college kids if they show promise in the future).

Cancer rates keep rising. The medical establishment publish all of these cures that they have done to save people in the last 20 years. Yes, we have great medical specialists who can save us temporarily, and that is it. Americans pay more than any other country in the world with all of these specialist, but our cancer rates still climb. Part of that problem is only addressing the symptoms and temporary cures, instead of preventative measures. “A penny saved is a penny earned” is a fallacy. If you pay a little to correct small problems early on, then you don’t have to pay for expensive problems in a year or two, or even if it is five to ten years down the road. What does it matter?! You are still paying for it… yes YOU.

But thinking holistically means the medical specialists, insurance and pharmaceutical companies would not reap the profits they get. Because the patient is either actually cured before something expensive and drastic has to occur, or they learn to manage it so it becomes stable. Yes, sometimes we do need medical specialists and medicines to make us well.

But we need balance.

Thinking holistically also means we do not just forget about cancer patients once they leave the office. The medical establishment needs to help people come up with plans of action, rehabilitation centers, or whatever is called for so that cancer patients actually heal, recover and are truly cured.

As a stem cell transplant patient, they only look at my five year survival rate, which for me is about 25 – 35%. I would predict that those percentages would be a lot higher if they looked at medical treatment holistically. I have the knowledge and tools to heal myself, most cancer patients don’t. I know I will survive, because I will actively do what it takes to make sure that happens, most cancer patients don’t. Give us time to really heal, without the fear of losing everything you have worked for your whole life to become a middle class citizen and be able to retire.

I want to go back to work! I loved what I did. I can still be a productive citizen for another 20 years. But I have to heal first. Otherwise, in two or three years it will be all for nothing. The cancer will come back, or GVHD will make me ill again so that I cannot work. What we are doing as a society medically makes no sense.

We the people have the power to choose a course of action. We can tell the medical and insurance companies how we want to be medically treated. Don’t say it should be their choice, we as a society and government do it all the time to plenty of jobs. We should not go blindly into this, but examine the countries with the best health care systems. Ours isn’t (read any report and we are at the bottom, yet we pay the most – almost twice as much). Use the best models to create a medical system that will work for our culture. Ours doesn’t work.

Lastly, this is a political note: look into payoffs from the big medical companies to politicians and throw them in jail. What they are doing, taking money for votes is against the law. And a special note to the Republican party (i.e., politicians), stop using scare tactics to make people afraid of change. Be part of the solution, not a roadblock to positive lasting change. If you don’t like what has been proposed come up with a real solution, not just business as usual. Because it doesn’t work. There are plenty of time periods and Presidents that embraced change. Why don’t you give it a try?! And remember, payoffs are illegal, and those that take them should go to jail.

End of soapbox.

~ Mark



Well we are still waiting for the final results of my BM biopsy, which is why we waited until now to write anything up. One good bit from one of the tests is that I am 100% donor! But its the FISH test that really matters. And this I don’t really understand. If I am 100% donor (mind you that is just a random sample from say a million cells they take from me and they only analyze 200 of those cells again chosen at random, I assume), then why is the FISH test saying they detected my MDS chromosome 7 abnormality (that was from the last BM biopsy, not this one)? Some answers to questions I need to find out. Chromosome 7 is a deadly bitch of a mutation. And in 80% of transplant patients it leads to a relapse within 5 years. So we have another week to wait. I have a new complication, but its a watch and wait treatment plan. Otherwise, things are status quo.

beach-footsteps-copy-copyThis is why they are being more aggressive with reducing my immunosuppressant meds so the donor cells can kill it off. At the same time my GVHD, which has been mighty quiet as of late, will come back and has. GVHD is a blessing and a curse. You want a little bit of it, because it means that the donor cells are killing off your old blood cells and some other organs cells. The curse part is getting too much of it. Because it does kill off some of your other organ cells. Depending on the person and how they treat their body (and genetics), your organs are healthy or not depending on how you eat, drink, etc.

I’m getting back into a routine to heal and recover. Gonna try to stay away from viruses or other evil things that we call germs. I need that. I really need that.

And from here it gets a bit personal.

To quote Jimmy Buffet, “I treat my body like a temple, you treat yours like a tent”. I did both throughout my life. The last 7 years, except for an occasional drink or five, my body was a temple. Certainly an old temple that needed some loving. After all, from 14 to 40 it was mostly a tent, or at least a rental apartment. So can 7 years of refurbishing make up for 26 years of drinking, the other stuff I quit by age 20. I don’t know. Thank Dog I was a teacher for most of that time… you don’t go to into a classroom hung over. Did it once and never again. So I guess that made me a weekend warrior! Anyway, too much information for those who don’t know me, but there are lessons to learn from what other people do.

Discovering I had MDS made me realize what was important in life, what I valued. It certainly changed how I lived and the relationships I have for the better. Yes, there always was a cloud hanging over my shoulder ready to strike with lightning. And it did. I took a very stressful job, but one I truly loved. I got to lead a dream team of people in creating some really great courses. I was stable for almost six years and stress is a mean SOB. I got complacent with what was really important… my family. And I paid the price. Treating your body like a temple does work. It won’t cure you. But it will slow down or stop the progression of a disease. Stress takes all the good you do and destroys it. That is how I see it and how I will live my life in the future. Low or no stress. My goal is to live long enough to see Caitie and Kai become adults, to be able to guide them in that journey. After that… is extra time to spend with Terri and family (my friends are included in my concept of family).

Now a bit of sad news. My Mom was diagnosed with ALL, a type of leukemia. Last word is that she is not willing to go through chemo, its not as bad as I went through, but then I’m not 73 years old. I’d like to see her live several more years, but its not my decision. I hate that we do not have a cure for this or all cancers. You know how I feel about it, if not read my cancer treatments post. Her name is Linda, so if you have an extra prayer, positive vibe, or some pixie dust, throw them her way. One group is actually trying to do something about this, Stand up to Cancer, check them out.stand-up-to-cancer

~ Mark

(from terri:)


Honesty time – this part of the journey sucks. One reason that Mark’s doctor held off on the transplant was quality of life before and after treatment, implying that quality of life post-treatment would not be so hot. Now I understand. We knew the road to recovery would be a long one. It is another to live through it. Yep, I am on this road with Mark, experiencing the good, the bad, and the ugly. The only thing I have freedom from is the pain and discomfort Mark feels. Honestly, he feels crappy. I guess, that although I knew the recovery was going to be long and slow, I expected steady improvement, a little better each day. And sure an illness or two, but not how bad it would knock Mark back on his ass. So this is tough to watch. Yes, he is getting better, but it is baby steps. Don’t get me wrong, it is better than no improvement at all. I am just saying basically that this is hard. I wish someone would have just said before we went through the transplant, that recovery is going to be a bitch and we can’t really tell you what to expect. But expect complications and having to deal with those. It wouldn’t have changed anything, we still would have gone through with the transplant, but maybe would have been better prepared for what comes after. I guess it is like having kids. Until you have them, you have no idea, no matter what anyone says, what life is going to be like, until you go through it yourself. I don’t know if any of that makes sense.

But!… I still know that this is all worth it and in the end life will not be so hard and Mark will be back to his old self… maybe with some small adjustments.

Hearing that he is 100% donor was a great relief, and I am hoping for good news on the FISH test as well. His blood counts, especially platelets, are starting to creep upwards. Baby steps, but up is good. In addition, they have decided that he is going to get the IV-IG treatment once a month for 6 months. That was the one that is super expensive and insurance didn’t want to cover. Doctors are hoping that will give him a little boost, and help keep any infections at bay.

In other words: There is fog in the mornings (like June gloom on the coast) but the sun breaks through and you can feel the warmth on your face and know that things are going to be good. And somedays, oh mah gosh: Look a rainbow! Still knocking on wood and hoarding pixie dust…

27. May 2013 · Comments Off on Be a Hero fundraiser & GiveForward website · Categories: Fundraisers, Thoughts

Close-up of human hands clasped together in unity against white backdropThe Be a Hero fundraiser on May 19th was a fun time for all and a success in collecting donations to support our family financially during this difficult time.

We would like to thank with all our hearts the generosity of those who have donated, by attending or through the silent auction, to the Be a Hero fundraiser. Additionally, to the many who could not attend and made contributions to the GiveForward website before and after to support the fundraiser. And to the following people for their time and generous donations to the silent auction for the Be a Hero fundraiser: Loretta Loibl, Bob Loibl, Dana Tynan, Janet Winkelman, Patrice and Kevin McCabe, Patrick Lannon, Greg O’Neill, Matthew Harvatt, Megan Matteson, Vaughnda Johnson, Terry Opalek & Michael Frontier. These are people that very generously donated items as a special favor. Jeff Loibl has worked his tail off with Fundraising. He has been running the Give Forward site and organized the Be a Hero fundraiser. I can’t even begin to tell you the amount of time and effort he put into the fundraiser. But he has been sending out emails and Facebook messages daily to keep people informed and ask them to help us. There is no way on this earth to say what is a meager Thank You.

I would like to draw your attention to the list on the right hand side of the page, under “Our Angels.” We wanted to acknowledge everyone who has supported us and helped us. We are astounded as to how long the list has become. Again, Thank You is too small a phrase to explain how we feel.

We would also like to thank all of you for your support through prayers, positive vibes, and pixie dust that you are continuously sending my way. Your comments and love help me get through some very dark days. This journey is far from over… I am at day 80 of the 100 most critical days during a bone marrow transplant, with only a handful of complications (knock some wood).

I am blessed by your love and support! Thank you!

~ Mark and Terri

We will be closing the GiveForward website on May 31st. To all of our Angels (over 120 individuals and families!), we thank you with all our hearts. Your gifts have made a difference in our lives financially and emotionally. It is very difficult for us to ask for any help, that is how we were raised and have lived our lives. But with humility and good advice from some family members and friends, we decided with the generous leadership of Jeff Loibl to open the GiveForward website. The GiveForward website was a good way to provide a way for people who wanted to support our family through this crisis. Donations are an important and very generous way to contribute and support families.

Quoting Jeff, “With every dollar you help raise or donate, you are helping them cover:

• lost wages during his hospital and hopeful recovery
• 2+ months of food and temporary lodging in St Louis, which is uncovered by insurance
• [monthly] insurance premiums
• medical and prescription co-pays
• travel and fuel expenses between Columbia and St Louis

Every aspect of this debilitating illness is costly. Not only financially; but mentally and emotionally. They are not sure when Mark will be able to go back to work or how much medical attention he will require [now and in the future]… That’s why we’re asking for your help in raising $35,000. This is the estimated amount needed to cover their expenses […] as Mark embarks on his long road to recovery.”




Its been a busy week for all. Donations, donations, donations! Be a Hero fundraiser on May 19 and the silent auction. A trip to St. Louis to see the Med team. And I’m walking two miles a day on the MKT trail. Let’s start with the positive and go from there. 🙂

Donations to Thank

Terri and I would like to publicly thank the following people for their generosity. Typically, we have been thanking people through Facebook, but not everyone has an account; likewise, we have some donations from some wonderful people but no email addresses. Thank you – “someone who thinks you are wonderful” (our hearts were touched by your chosen name as well), Stephan Lampasso, Jennifer Fogle, and The Diversey Family.

Be a Hero fundraiser silent auction on May 19th.

Here are some important details on the silent auction:

  • Just because you can’t be at the Be a Hero fundraiser doesn’t mean you can’t be a part of it!
  • You can be a silent bidder by contacting Jeff between 1-5 on Sunday. Just text him with the item you’re interested in and he’ll update you on the current bid. Then just let him know your bid amount!
  • It’s that easy. So check out the items on the fundraising page then give him a text at: 773-575-4786
  • (All bids must be closed/paid out by 5:30. Payments are processed through the GiveForward page.)

REVISED FINAL LIST for Silent Auction

(suggested retails are not the opening bid amounts, but they give you an idea of the value)

  1. Quilt: queen-size, Grandmother’s Garden, hand-made by Loretta Loibl: suggested retail $500

    Grandmother's Garden

    Grandmother’s Garden

  2. Quilt: queen-size, Ramblin’ Rose by Loretta Loibl: suggested retail $500

    Ramblin' Rose

    Ramblin’ Rose

  3. Occasional table: white oak, English Chestnut finish, 12 X 35 X 30″ H by Bob Loibl: suggested retail $250

    Occasional table

    Occasional table

  4. Plant stand: white oak, English Chestnut finish, 30″ H by Bob Loibl: suggested retail $75
  5. Plant stand: white oak, English Chestnut finish, 30″ H by Bob Loibl: suggested retail $75936803_10201003234940766_1574450200_n
  6. 19×21″ framed original print of Johnny Cash, from the photographer, Dana Tynan: suggested retail $600

    Original print of Johnny Cash

    Original print of Johnny Cash

  7. $100 gift certificate to Fleming’s Steak House
  8. $50 gift certificate to Pastoral Artisan Cheese & Wine
  9. 36 Edwin Jackson Autographed Baseball: retail $100
  10. 5, ½-lb boxes of Terry’s Toffees: 5 different flavors packaged in 5 different boxes: suggested retail $85
  11. Twin orchids planted in decorative pot: retail $140
  12. Ready-to-fish kit from “Addictive Fishing” on Fox Sun Sports: suggested retail $240
  13. Afghan: hand-knit throw: Knitted by Jean Kemp 36″ x 72″ suggested retail $150

    Afghan: hand-knit throw

    Afghan: hand-knit throw

  14. Quilted lap blanket by Janet Winkelmann: suggested retail $100
  15. Handmade wooden bi-plane; approx. 14″ long with 13″ wingspan: suggested retail $100

    Handmade wooden bi-plane

    Handmade wooden bi-plane

St Louis Update

There is a silver lining here that I am looking for, but have not found. So I’ll start with the positive once again and maybe I’ll find it while I’m writing this. My GVHD in the gut did not trouble me this week as we reduced the Prednizone by 10mg (or 1/4). So we are dropping it another 10mg this week. Once again, we’ll have to wait and see what happens, so please rap on that wood and send some more pixie dust, positive vibes, or prayers my way, if you can. 🙂

I mentioned that the Med team and my Doc would be adjusting meds to find the right combination for me… it takes time and perhaps this is just a part of the big picture, and I can’t see the forest through the trees. In the last 3 weeks my platelet count has dropped significantly. On 4/29 it was 79,000, last week it was 69,000 and today it was 54,000. So we are running a bunch of tests, some take up to two weeks. It could be one (or more) of six issues, some are just adjusting the meds or giving me a new one, some are not so good. I’ll know some more or perhaps the answer next week. I’ve dealt with this level of a platelet count before, so I know how to be careful. On top of this, both kidney and liver levels are going up again, so it was back to the treatment room for more IV fluids and I’m drinking a lot of liquids this week.

I guess I was not expecting complications like this and once I get my head wrapped around it I’ll see the forest once again. Silver lining where are you?! Perhaps Terri will find it…

~ Mark

Silver lining huh? Our family is together. Mark is getting healthier everyday. No, we do not know why his platelet count is dropping, but Stephanie the NP did say that it is not something to get stressed out about now. They are running a bunch of tests to rule problems out and then they try adjusting the meds. Kinda what they have been saying all along… play with all the meds until they find the right combinations. The hard part is that, it is one thing to KNOW this, it is another to actually go through it. You just kind of going into this hoping that everything will go textbook and be perfect, and then… hello reality!

Did I find the silver lining? I don’t know. I do know this. I believe with every fiber of my being that Mark is going to get better and healthier and it is just going to have to be one step at a time. 



Copy_of_home_sweet_home.2451702For those keeping track by days: Days 53 – 54.

So on Monday the Doc gave me permission to go home to Columbia (I should say we, since this journey is Terri’s as much as mine). She remembers all the things that I can’t or won’t during my hospital stay and 5 weeks slowly recovering. We have/had been staying at a great place called Almost Home, run by a lady named Toni. She was great! And when you stay at a place for over two months you tend to bring or collect stuff. We couldn’t just pack up the car in an hour on Monday and take off.

Tuesday – Terri and I (my part was mainly to watch and shuffle things around) organized and tidied up the place. Terri did almost all of it. I can’t clean, lift much (not over a gallon of milk in weight) or basically do anything substantial. That does not sit well with my male ego, but there it is. I have to accept my limitations for now. And fighting Acute GVHD in my gut takes its toll.

Anyway, Terri gets almost everything packed up and ready to go, but we can’t leave yet. Terri’s exhausted and I think Bob and Loretta are finalizing things at our house. Plus, we wanted to make sure the new meds were really doing there thing. To go Home and have to come right back to the hospital would screw everyone’s mind up. The kids still do not know, partly because what if I have to go into the hospital. But mainly we wanted to surprise them. Two months away from each other was really hard. Especially for them. I could see it in their eyes and demeanor when we Skyped.

Wednesday – Terri packs up the car, as I pack the frozen food. Double checked we hadn’t left anything behind. Got in the car and didn’t look back. As for me, I do not want to remember much of that time, it is temporary and unimportant. What is important is that I’m alive and recovering and on my way to wellness. That is my path in this journey through hell. Now I want to remember the events of the coming months, and look forward to it with some excitement. I’m sure there will be ups and downs, but now I can really heal. I have my family!

We pull into our driveway around 2pm, just enough time to unpack, rest and be ready for the kids to arrive. We even moved the car up the street so as to not give away the surprise. The bus drops them off around 4pm. Caitie came in first, and just stared at me in disbelief. She ran to me and we held each other for a long time as Kai joined in. Talk about an emotional moment, not one you can easily describe. At least I don’t want to. Loretta took a picture of Caitie running to me, but it is blurred, so not really a moment you can capture on film. Just as well… it is burned into my memory for life.

But the day goes on and the kids have things to do. Both did some of their homework next to me, while I laid in bed. I was wiped out, needed some rest, but to have them near me was pure joy. Then we ate and the kids and I played Minecraft for a couple of hours. I kinda hogged them to myself. Not sure how Terri felt about that, and I am sorry she was not with us. But there it is… I needed them and they needed me. We were a family again.

~ Mark

PS. from Terri – We are home. We are with our children. I AM HOME! I get to hug and kiss my kiddos. It was like a real live game of tetris trying to fit all the boxes, luggage, and bags into the car, but I did it! We left the key on the desk of the duplex, closed the door behind us, and were out of there! I do remember every single day we were in St. Louis and I am now ready to move on with our lives. I realize things will not go back to exactly the way they were before we left. But will be working together as a family to figure out how life is going to be now and work through this process of helping Mark recover.



Good news on the almost home front. Blood counts look outstanding! Let’s recap, shall we?

Mark                                “Normal”

White Blood Cells     7.0 (up 2.6 from Friday)           3.8 – 9.8
Hemoglobin              10.9 (up 0.7)                          13.8 – 17.2
Hemocrit                   31.7 (up 2.9)                          40.7 – 50.3
Platelets                   74 (up 20)                                140 – 440
Neutrophil                 6.0 (up 2.6)                              1.8 – 6.6

tumblr_lzxziiuM9X1r3ec6wo1_500The way they measure neutrophil count for out-patient is a little different than when he was in the hospital. We were looking for that magic 1500 number. Obviously the ones I am reporting look much different. Never fear though, they have not dropped thousands. For example, 6.0 is really 6,000. As you can tell, some of these have moved in the normal range and some are still sluggish. But not considered a problem, as the recovery from this takes a good long time. But our donor stem cells seem to like their new home and are doing their job. Keep it going stemmies!

We are keeping a close eye on Mark’s skin for any rashes. So far (knocking on ALL the wood), there haven’t been any major signs of Graft vs Host Disease. Mark does have a rash on his face, but the Doc didn’t say, “That’s it!” Which is amazing as 90% of patients get some form of it. It usually takes place in the liver, the gut, or the skin. Blood tests aren’t showing any liver issues, GI tract seems to be doing okay (other than the nausea that all the meds are causing), so that leaves the skin. Those of you know Mark personally, know his fair Irish skin. So we are trying to look between the freckles and under the pink for any signs of rash. We think we maybe see something, but then it goes away. So crossing fingers, that he is one of the lucky 10%. Of course, our nurse practitioner said GvHD could show up at any time for the rest of your life. What a buzz kill!

We were happy to actually talk to his doctor on Monday and get his take on everything, and start grilling him on when we can go home. Mark also had a list of issues that he needed answering. Stephanie, the nurse practitioner, said they never let any one leave before 60 days.  But doctor says, well…. maybe we can let you go a little early. Next set of labs and doctor visit is on Monday the 22nd and the 29th, and if all goes well… who knows? We’ll be home for Kai’s birthday, and that is a BIG motivator.

Of course, we really weren’t expecting to get out of here before 60 days, so now my mom and dad are scrambling to make sure the house is ready for Mark to come home. Allergen free, carpets cleaned, that kind of stuff. But it is big, pain-in-the-neck stuff. I don’t think I have really expressed the gratitude I feel for all my family is doing. My mom and dad have pretty much put their lives on hold to move into our house and take care of our children. It is not easy. It’s fun to try to remember how to parent youngish children (she says with much sarcasm). And, of course, everything that Jeff has been doing with coordinating fundraisers and stuff. He set up the Give Forward thingy (which is the widget to the right), but also is organizing a serious event in Chicago. The generosity of people, from my family to people I have never met, amazes me. And I will never be able to say thank you enough.

Okay, I am babbling and getting a little teary. Besides, I think Mark had something he wants to say…

with much aloha

I am really glad we saw my Doc. I got my questions answered, and we are back on track. I’m on only the meds I really need. Back on the Tac and we need to monitor my kidneys closely. We bought a bunch of gatorade so I can help flush the toxins out of there.

~ Mark

One step back…

Last last few days have been frustrating health- wise. I’m trying to get stronger, eat better, all those good things. But they don’t have my meds right and it makes me nauseas and drained of energy. As Terri said they screwed up a week ago and I was taking to much meds. So they had me stop taking my tacrolimus (anti-rejection/immuno-suppresant), tac for short. I understand that my kidneys counts are elevated, but tac is what is keeping my new immune system from attacking the rest of my body. Graft vs Host disease can be really nasty, and can kill you. So I’m a bit on edge right now.

We see my Doc tomorrow, instead of the nurse practitioner. She’s great, but I trust my doctor. He’s the Man! I don’t think we will be going home early this time, too many issues to solve, some big (tac), some small (nausea). And then when we do (which I can’t wait for), Terri still has to drive me to St. Louis once a week until Day 100.

The weekend with the kids was good for all of us. Unfortunately, Caitie was getting over a sore throat and had a serious case of the sniffles. I couldn’t give her the love she really needed from me, she got some… I hope it was enough. They won’t visit with us for another two weeks and that is a long time for both her and me. Kai got his full share, which is a good thing. I think Terri got her’s too.

I don’t know how she does it, but she is incredible. So thank you My Love! for all the big and small things you do.


~ Mark


I forgot to knock on wood yesterday, didn’t I? It wasn’t a bad day, just not quite as good as yesterday. He had a bad night as far as getting sleep goes, so not quite as perky. He did eat some real food. A tiny bit as far as you and I are concerned, but it was real solid food. So, yay! We did two laps around the floor before nature called.

Medically, everything was pretty much the same as yesterday.

Add to the mix though, because it is oh so fun and majorly embarrassing, diarrhea. And the fact that they wouldn’t give him anything to treat it (Imodium) until they were sure he didn’t have any bacterial infection. Well, bacteria has been ruled out and they are now treating it.

For those of you covering your eyes, crying “TMI!!!”, remember I am also writing this for people that are also going through this or may be having treatment for MDS (or even just a marrow/stem cell transplant) in the future. But for our family and friends, I say 😛 Just checking to see what your embarrassment factor is. And how much Mark will let me get away with writing…

Right now he is getting platelets, but no blood tonight. No new meds yet. Although, new young doctor came by tonight and wants to try something new to help him sleep. *rolls eyes* These doctors… they just want to throw a new drug at every twitch. *deep breath* I love our doctors and I love our nurses. They are taking very good care of him. And I want Mark to get the medications he needs so he is comfortable, as comfortable as he can be, and can concentrate on healing.

We had a visit from the “discharge nurse” (that is what I am calling her, because I can’t remember her real title) who talked to us, mostly me, about what to expect when he is discharged. Which may be a little sooner than I expected. I had it in my head that he was discharged ~30 days post-transplant. She said it was more like 21 days. But beyond, eating, drinking and moving around like normal (sorta), his ANC count has to be up to 1500. I talked about that one yesterday. It was 260 when we checked in to the hospital and diddly-squat today (yes, that is the medical term for it). She also talked about what was and was not okay at “home” (remember we will still be in St. Louis for about a month)… and a whole lot of other things that I will be responsible for and did I tell everyone I am not a nurse? Sigh… the things we do for the ones we love. I kid. She left me with a book and they give a class, so how hard can it be?

Anyway… so today was a fairly mellow day, which I will take. The nurses say that the next 3-4 days may be rough. And to expect a lot of two steps forward, one step back. But as long as the overall direction is still forward, that is good enough for me. I just double-checked with his nurse and she said that blood counts don’t usually start to go back up until days 10-12. So between now and then it is common for him to get fevers and other things off and on, because, you know, his body is TOTALLY FREAKING OUT right now.

Side notes for anyone that is going to be a caregiver: You do a lot of hurry up and wait. I feel like I am rushing all over the place, while at the same time just sitting around. I fetch things, ask lots of questions, double-check a lot of things, run to the grocery store, run to Target, do laundry, do dishes, take the garbage out, etc. I think about the things that I need to do outside the hospital and try to figure out how I am possibly going to get them done when all I want to do is be at the hospital. Oh yeah, and get my work (like the job thingy) done too. I am someone who likes routines, and knowing what to expect. So I take my hour in the morning to sit and drink coffee and read blogs and news, before I get things ready to come here; which involves packing up things to bring to Mark, making myself lunch and dinner to bring with me, packing up the things I am going to need for myself during the day. I love my wheelie carry-on. I would never be able to haul all this stuff in and out of the hospital without it. I look at some of these ladies walking in and out with just a purse and I am so jealous. When I do get home, it is laundry and dishes and unpack what ever I have brought home from the hospital/grocery store/Target, have a cerveza, Skype with my kids (if I get home early enough), finish up my blog post, turn around in circles trying to remember what I have forgotten to do, before I finally go to bed. I am not whining about this. It is just what needs to be done and I am happy (okay, yes, I would much rather we were doing something that didn’t involve a hospital) to do it. But it is good to know what to expect if you ever have to go through it yourself. Okay, enough about me.

So, it’s about 6:00 and Mark is sleeping. The nurses say just let him sleep. As long as he gets up at sometime during the day and moves around this is fine for now. He may or may not sleep the evening away. If he wakes up, we may watch some Star Trek, Skype the kids, finish our Cribbage game. If he stays snoozy, I will stream the surfing competition (today is the last day) and hang out for a while.

Okay, I really didn’t think I had much to say and this has turned into a blather on post. I think I will go heat up my dinner and just save this to look at later. Then I will decide if I want to delete most of it.

I’m back. It’s 11:20pm and I just got home. Mark woke up early this evening, feeling better. Amazing what sleep does for you, isn’t it? But no Star Trek and no cribbage. We did Skype with the kids. I stayed late at the hospital so MJ and I could watch the semi-finals and finals of the Quiksilver Pro surfing competition. (Have I mentioned we like surfing?) Our man, Kelly Slater won the event and we were so stoked. We were high-fiving each other for two hours everytime he had a good wave. It was a good evening. 🙂 Anyway, he didn’t want to risk another bad night and went ahead and took the new med, that the doctor recommended. I hope it does its job and he gets a good night’s sleep.

A note: his ANC counts weren’t really zero. They had left the spot blank because they didn’t have the numbers yet, which I mis-interpreted as zero. They were actually at 200.

And since it is so late, I really don’t feel like going back and trying to edit this post, so you are getting it all, the good, the bad, and the ugly. Please forgive any typos.

A hui hou kakou,


images-1I just want you to know that I read every comment you all make whether it is here on the blog, or on Facebook, in an email or Skype, or whatever. I am sorry that I haven’t managed to reply to all of them. Somedays just get busy, but I read them and I cherish them, and they fill my heart. I think I can speak for Mark on that as well. You are all my angels!

I did put my email address over to the right and down a little, so that if you want to get a hold of me or Mark directly, you can. Just please don’t put me on some mailing list. 😉

12:00pm: When I came in this morning, I found a note on Mark’s white board from Judy, his night nurse, with his orders for the day: Shower! Up and Walking! He said he had already walked to the end of the hallway and back. We will see if I can get him to go for another walk later. He is currently not hooked up to his IV pole and will be free of it until 2pm. So I am going to see if I can get him in the shower before them. Of course, right now he is napping…

4:30pm: Went for another walk, has some peaches and applesauce for lunch. We’re thinking of trying rice tomorrow. Woo Hoo! I know this is so exciting 🙂 We played a game of cribbage. I won! I don’t care if he is muddle-brained, I am claiming it! They added a new drug, Valtrex, which is an anti-viral. Nothing wrong, just a prophylactic. (trying not to let my 13-year old out and giggle)

Later: All in all not a bad day. He had a headache most of the day. But that may be because his pain meds kept being brought late, instead of catching the headache early. His night nurse, Judy, is awesome. She takes such good care of him and sits down with me and goes over everything that is going on, exactly what they are giving him and why. Answers every single question and never acts rushed. But he has had her for 3 nights including tonight, so I think she gets a few days off, and tomorrow will be someone new.

No new drugs today. No blood transfusions, no platelet transfusions. His blood counts are going down, as they are supposed to.

Tonight was pretty mellow. I crawled in bed with him (it was, shall we say, cozy) and we watched the Quiksilver 2013 Pro. It’s a surfing competition being held on the Gold Coast in Australia. We should be able to catch that for another day or two. Just in case you are trying to find it, don’t bother with ESPN. We stream it on the lap top direct from the Quiksilver site.

I was going to try to make him rice tonight, but I hung out at the hospital too long and it needs to simmer for a couple of hours. Maybe I can wake up early. Stop laughing!

Some science-y people are curious about his central line. Here is a thumbnail. If you really want to see it, you can click on it to make it bigger.



And to prove he was up and walking:


Yup, that’s an action pose, cuz I told him that no one would believe he was walking if he was leaning against the wall while I took the picture.


Night all – catch up with you tomorrow.


imagesSince yesterday (Thursday) was Day Zero, but the transplant took place at 12:20ish am the next day (Friday), we get a second Day Zero. At the stroke of 12:20 am Saturday it will officially by Day 1.

I fluffed the pillows and put out the welcome mat, so I hope those stem cells are making themselves at home. Hmmm, maybe I should have baked them some cookies.

Today was fairly uneventful, YAY! Still headachy, nauseous, and tired. He snoozed a lot. But he did get out of bed and sit in the easy chair for a while. As I was leaving tonight, his nurse told me that tomorrow I was to make him get out of his room and walk around the floor for a while, even if he had to tuck his puke bucket under his arm while he walked.

Tonight at 24 hours from transplant they are adding a new drug. It’s called… wait… I made her print it out for me… Methotrexate. It is to help prevent Graft vs. Host Disease (GVHD). Basically that is when the new cells reject the body they have been placed in. There are a lot of levels of this disease. Apparently you do want to get a mild case of it. It is like you build up immunity to it. But the drug is given as a prophylaxis. It’s okay, I had to look it up too. It basically means preventative. Kinda like all the antibiotics he is on, is to help prevent any infections. Judy, the nurse, told me that although it may have a couple of side effects (don’t they all!), patients really don’t have a reaction to it. So I felt safe leaving him in her capable hands tonight and sleeping in a bed instead of the easy chair in his room. You wonder why patients are always so exhausted? Because it is impossible to get a good night’s sleep in a hospital room! Some caregivers/family stay with their loved one 24/7. I don’t know how they do it. I just have to trust that Mark is in capable hands and they will take good care of him.

Teeney hiccup. Mark did develop a slight fever this afternoon. But it never went over 99.7, so the nurses were like “eh, whatever”.

So the drugs he is on right now: antibiotics (cefepime),  anti-rejection (tacrolimus), anti-nausea (Ativan), anti-pain (Dilaudid), and adding the anti-GVHD (Methotrexate). Then he gets blood and platelet transfusions as needed. They gave him two bags of blood today, but said his platelets were good.

The latest blood tests showed that his kidneys are bouncing back from the beating they took. Yay! All I have to say on the subject today is, that if you are agree to participate in a study, make sure you read all the fine print and are aware of the possible reaction/side-effects. Go-go science and research, but make sure you know to what you are agreeing.

In addition to the Ensure he has been drinking, Mark tried some applesauce and diced peaches today. They stayed down and tasted good. So I am running to Whole Foods in the morning to pick up some organic versions for him.images

I talked to Caitie tonight about the transplant. And she said she pictured the insides of his bones like city streets with houses and sidewalks. And the new cells, which look like cheerios with eyes and smiles BTW, are walking down the sidewalks picking out their new homes. I like that.

Okay, little noodges. Have you given blood lately, have your given platelets, have you registered to be a bone marrow donor? End of PSA. Thank you. 🙂

PS: Also huge thank you to all of you that are donating funds to us. You have no idea how much this eases what we have to deal with. Every little bit helps and I am so grateful for it. End of story on that. <3 <3