Its July 13th, Terri’s Birthday…. yea!!! So we are taking it easy, she is sitting on the couch and doing her own thing, The rest of us are making her life a little easier.

We traveled to St. Louis on Wednesday, July 11th to see NP Stephanie, and get the IV-IG treatment. During the last “bug”, I dropped 10 lbs, so we are working on that now so I can gain back my strength. Remember before I got hit with the BK virus and the last bug I was walking 2 miles a day and gaining strength. During those 3+ weeks I was barely able to leave the bedroom and that set me back. It was almost like getting out of the hospital after the transplant. But I’m taking it slow, walking around our cul-de-sac with Caitie each day and building up strength.

I'm a Virus _Argh!

I’m a Virus -Argh!

It appears to Terri and me that the second bug might have been my body finally taking on the BK virus and has kicked its butt. I have had no pain since and am off the pain meds. I’s sure its still lurking around, because it never goes away, it just goes dormant until something else triggers an outbreak. It can go dormant forever, it was not fun. NP Stephanie and I looked over my lab reports… I read each one so I can ask questions and research what each means. Its my life and I take an active role in my care. Anyway, I noticed that my CMV lab came back positive. They have been checking it since I got my transplant. Why? I was CMV negative, but my donor was CMV positive. There is a 30% chance of transfer from donor to host. Its just barely detectible so we caught it early! And that is a very good thing.

CMV, or Cytomegalovirus (an overview from the CDC), is a group of viruses that is part of the herpesvirus family, that you probably have had. 50 – 85% of the population has it. You get sick, and then it goes dormant ( just like the BK virus). In immunosuppressed transplant patients it is quite serious. It can affect many organs of the body, but primarily the lungs and gut. If you get pneumonia from it, there is a high mortality rate, the gut not so much. I’m not worried. We caught it early, and the Med team is doing something about it now! For starters, we dropped my Prednisone to 30mg/day to let my donor’s immune system help fight it off. We have to be careful though, so my GVHD does not come raging back. But we have been decreasing the dosage of the Prednisone for a three weeks now and so far so good.

The IV-IG treatment I got on Wednesday should also help. It does many things and is a treatment they sometimes give to patients fighting CMV. So that works in my favor as well. I truly believe that going with the flow works. If I had my IV-IG treatment 6 weeks ago, when I “should” have, it would not have helped to fight this virus off. Now it has a chance to.

Lastly, on Friday I received my first IV dose of an anti-viral med called Ganiciclovir. We are really happy that we were able to get the IV form. They have a new pill form, but the co-pay alone is $1000!!! Getting it in IV treatment gets sent straight to insurance. So instead, my local doctor was able to give it to me in the treatment room, they like to give you a new drug in clinic or a hospital just in case of an allergic reaction… safe policy… I don’t mind. The kicker is that they are sending out a nurse to my house today to administer it. She will teach Terri and I how to infuse the drug through my “central line”, so we can do it ourselves. The nurse will come out for the first few days to “train” us.

I don’t know if they will send out the same nurse every time, but the first one’s name is Kathy, she seemed pleasant on the phone and is coming around 2pm today (its Saturday) to administer the second dose. I get a total of 21 doses over the next three weeks. The nurse will come back every 3 days to draw blood and send it to the hospital so they can check on the status of the virus and my kidney function. Of course there is always a side affect to drugs. This one damages the kidneys. I already have a problem with them, so monitoring is going to be very important. I’m drinking a lot of water, so that should help flush the toxins out of my kidneys.

From what I have read, and this is from research journals, the Ganiciclovir does not kill the virus, but controls it in order to give your immune system time to build up killer T-cells to build up antibodies to fight it off. If all goes well, the CMV virus will go dormant, and they will monitor it for another year or two to make sure it does not come back, or until I’m off immunpsuppressing drugs.

All of the past four weeks of infections and drama is normal for transplant patients. I just got lucky and had my first ~90 days free of “illnesses”. Most transplant patients get hit sooner and it is spread out more. I got hit late and one after another.

We are on track with the treatment plan, which is to slowly lower my Prednisone and then wean me off immunpsuppressing drugs while making sure my GVHD is under control and does not come back. That is going to take time. And there will be more rocks in the river (switching to the new metaphor) to navigate around. Bottom-line: I’m back to going with the flow.

Going with the flow.

Going with the flow.

Huli pau!

~ Mark and Terri

images

Even this beautiful flowing river has some “bumps” in it

This begins as a story and ends with what is going on and my treatment plan.

The Story

Day 115 (June 30th, in other words), life started off as a beautiful summer morning. I know because I woke up at 6am like everyday. I took pre-breakfast morning meds, and kicked back on my “lazy chair” to read. Got up at 6:45 to eat my breakfast protein bar (all natural and organic – see you can get those, they don’t have to be processed now, but that is another story). Grabbed a glass of OJ and took my morning meds that have to be taken with food. By then I was tired, usual for me and went back to bed.

Well, 9:30am rolls around and I wake up groggy, there is chaos racing through the house, because Terri is taking the kids south so they can hang out at the lake until July 4th, when we would all get back together again for my favorite holiday (I think I have infected Caitie and Kai with that same love). Anyway… by 9:45 I wake up enough to know I not just groggy, and have a low grade fever. I, of course, tell Terri and to go drop them off (the Loibl grandparents meet us half way, so its only a 1 and 1/2 hour drive each way, plus they have lunch together). Terri is feeling reluctant… I say its only 99.5, it will take hours before it gets high enough, if it even does, to get to 101 degrees, which is DO something immediately on the Orange Emergency Instructions colored card. Thank God, Terri is smarter than me and puts contact numbers in my cell phone to call if I need them while she is gone, and walks me though them so I know where they are. Off they go!

It’s a half hour after I took my first temp (99.5) and 10:30,  my temp climbed to 100.3. OK… still no big deal. At 11am its 101.2 and the bells on the Orange card go off. You are drilled not to medicate to “mask” the fever by the nurses during the first 30 days in the hospital. So that meant calling the BMT (Bone Marrow Transplant) Fellow at Siteman for directions on what to do. As you know we live 2 hours from St. Louis. After the last trip (also on a sunday, odd coincidence there), they tell you to go to the local emergency room (ER). We did this two weeks earlier, so I know what I should do. It usually takes them a half hour to call back, but I’m alone, and waiting as my temperature spikes; that does not seem like I good idea. I call Terri and tell her what is going on, but to keep going. In my mind, ERs take forever to get through (although, they do rush me in quickly now these days).

So I start on my list of people to call, and Gwen is at the top of the list (who came to our rescue the last time) to drive me to the ER. She is looking after her son and his friend, and ASKS me if she can bring them along. Hell ya, I say. Gwen shows up 15 minutes later without kids – she made arrangements that quickly – and was was at my door. Good thing too, cus I’m starting to not think clearly. Gwen helps me find everything I need to go to the ER and off we go. The BMT Fellow has yet to call back, its well over 1/2 hour, but I’m at the ER. My fever in the ER is 102+. Side note: You can’t make cell phone calls from the ER at Boone Hospital, you get no signal. Bless Gwen, she stayed with me the whole time until Terri arrived! Thank you Gwen from all of my heart.

They run a bunch of tests, chest x-ray, and the oncology doc comes down to talk. I have no idea what actually got said, but made it clear I had to talk to the BMT Fellow to do what was next. Gwen made a couple of calls outside(to get a signal) for me and its 2 hours since I called into Siteman to talk to the BMT Fellow. The oncology doc comes back and asks if I want to be admitted or transferred by ambulance to Siteman. No idea why, but I said, just admit me. Not long after I have a room and and am resting in bed. They begin to stabilize me – IV fluids and antibiotics. Terri arrives and I feel safe. The rest of the day is a blur. Except that I have an appointment to see My Doc tomorrow (Monday) and I have to get there, no ifs, ands, or buts about it. Terri and I are adamant about this to the nurse. By evening I feel back to normal. No fever.

The next morning at 7:30 Dr. R, my oncologist in town comes in and I tell him about my appointments with My Doc today (Monday, July 1st) and I want discharged ASAP so I can make that appointment. Illnesses do wacky things to your blood counts and my hemoglobin is at 7.9, where it should be around 13 and I need a blood transfusion. Well that complicates things. He is an excellent oncologist, but he is not a transplant doc, so he consults with Siteman and gives Terri the OK to take me there, but to drive like I’m an egg and not break me. That will be easy, Terri drives very safely, unlike me (unless I have the kids).

We come home and pack up like we are going back to the hospital for couple of days, just in case, and off we go to St. Louis.  We get there early, because that is what the BMT Fellow told Dr. R for us to do. After all, if something should happen I’d be there and not somewhere else. We wait around to do labs (2 hours); when you have an appointment they stick to it, plus it was busy. We had our iPads, so we had plenty to keep us from getting bored. Next appointment… to see My Doc.

Part Story, Part Treatment Plan

I’m an informed patient, I do my research (yes all internet, but only from government or university sites and I read research papers. I like to know what is going on, it’s my body and life we are talking about). But through the many appointments I have had, I always have a list of questions and don’t leave until I have all my questions answered. Unfortunately, I usually take the lead, because I have this list of questions. Not this time. I tell him we both have a set of priorities about what I should know and I want to hear what he has to say before I ask any questions. And I listened.

From the biopsy results, I’m 99% donor, which is really great to hear. On another test, called the FISH (fluorescence in situ hybridization), says I still have some chromosome 7 cells lurking about. Those are the really bad ones that turn into AML. But he doesn’t know if this is a concern yet, because they are barely showing up (0.5) and the high of normal range is 1.37; I am still unclear what that means, except that we need to just wait and see. Because right now there is not a thing we can do about it. He is concerned about my platelet count, and that my red cell count changing (possibly reacting) the way it did when I just got sick with the fever. But again he says its a case where we are just going to have to wait it out and see what happens. My GVHD is under control with the meds I am taking, but that leaves me without an immune system. We have to begin reducing the meds to see how the GVHD is progressing and if my gut and liver will play nice with my donor cells. He has answered half of my questions. Terri asks some clarifying questions as do I and we wait until he is finished.

I do ask all my questions, replacing the ones he answered with clarifying ones. We talk about the BK virus and IV-IG treatment, and I just have to deal with the BK virus until it clears up and he does not want to put me on anything yet. He wants to reduce my meds and see what happens for a bit and then take the best course of action. He talked about getting more cells from the donor to help infuse with what I already have. But that was a couple of months down the road. AND That is basically it. He left and gave NP Stephanie some directions to follow up with us, since we will see her next week. She ordered some labs, so I had to go back to draw more blood samples and said I would also be getting the IV-IG treatment that day (next Wednesday). We had thought he said he was going to wait on that and questioned her if she was right, but she said he just told her to go ahead and do it. So there you have it.

(terri: After that, it was over to treatment to get two bags of blood which took over 3 hours to infuse. When was all said and done, we didn’t leave St. Louis until 9:30. Then the two hour ride home. So, yep, a long day. Actually a long couple of days. You would think we would get used to this… but, nope. But we take each thing as it comes and deal with it.)

The treatment plan is to slowly reduce my immuno-suppressing drugs (Prednisone) and see what happens. We can always bring them back up, if the GVHD gets bad. And to see what the IV-IG treatment does. And wait to see what happens. But it looks like I am going to see him every two weeks and NP Stephanie every two weeks trading off for the next month or two. (So going to St. Louis every week) This is a pain in the butt, and at the same time reassuring because they are really looking after me. I  can read between the lines, its going to be a bumpy road for a while. It’s not the path we had hoped for. But the forks in the path I am on will lead me to health and wellness. For that I am sure.

~ Mark & Terri

 

blood-tests-diagnose-depressionI now have a routine (YEAH!!!) and am adding to it little by little. Recovery is a full time job, it takes work and a lot of effort, if I want to be on the path to wellness. AND THAT IS MY PATH. What is happening now is just a big pothole in the road that we have to navigate around. I could end this post here, but I think you want to know what is going on and this is also for other transplant patients.

We made the trip out to St. Louis yesterday and things have not improved. The Med team was able to rule out 3 of the 6 possible reasons for the drop in my platelet count. All the lab tests came back negative or were what was expected of a bone marrow transplant patient at Day 75. Clearly dropping the dosage level of the Prednizone is having an impact on them and they knew it would drop some (in fact all my counts are lower this week) but not this much. My platelet count is now at 39,000. So they decided to bring up (10mg) the dosage of Prednizone to 30 mg/day. The hope is that this will prevent further decline of my platelet count, until additional tests come back. And all of this is much more complex than I am sharing, because I’m still trying to understand it.

Next week we go back to check in. We have to go to St Louis twice though. On Tuesday we will see where my platelet level is. That will determine if I need a transfusion. They also are setting up for me to get infused with a “growth” drug (IGG) to spur the platelets to get active and grow more. This infusion takes 4 hours and getting platelets takes another 3 hours. So we have to go back on Thursday to do these. They can’t do them together, so it is going to be a really long day. Unless, of course, things significantly improve with the Prednizone. We decided to wait until next week with the IGG so we can determine what drug is doing what to my platelet count. Being the scientific sort, I pushed for that option, because, how else would we actually know what did what.

But there is an underlying problem that needs to be discovered. The Prednizone by itself is not causing my platelets to drop this much. What we have left is that one of the drugs is impacting my platelet counts, there has been a change in the amount of donor cells, or there is not enough stem cells that transform into platelets to propagate.

Let’s start with the positive or easiest solutions. 1). The IGG works its magic and it overcomes the underlying problem; 2). I’m taking an antibiotic to control or prevent a specific fungus from growing. This drug sometimes can decrease platelet counts. So all we have to do is switch it with another drug that does the job. We are not doing it this week because of the remaining test that has yet to come in. The remaining test has to do with the donor stem cell line.

Not so positive, but something the Med team can begin to do… So next week we will know whether the donor stem cell line is still at 100%. If it is not, my MDS has come out of hiding and is beginning to grow. But the positive is that is just part of that plan, that they have to play with the meds to allow the donor cells to kill my MDS cells off, or knock them back and keep them under control. They have to be very careful about this, because in doing so, I’m going to get GVHD in the gut worse than it is and it could affect many other organs. I trust my Doc to get that balance right, if that is the problem.

Not so positive, and hopefully not a problem. This requires an early bone marrow biopsy to determine. YEA! It is possible that when I got my transfusion I did not get enough of the stem cells that turn into platelets. I know that makes little sense, because it is a single stem cell line that produces all of your different blood types. And I’m not sure I understand this correctly, but when they “harvest” them from the donor many already have a predisposition to turn into a specific type of blood cell. When they harvested the stem cells from my donor, we really did not get as many as they had hoped for. So it is possible that I just did not get enough donor stem cells to complete the job. We would have to ask the donor to donate another time. I believe in my donor and she is there for me to save my life. So to my angel, and I wish I could tell you this personally, thank you with all my heart for giving me life.

~ Mark

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. 

~terri

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11. May 2013 · Comments Off on BE A HERO · Categories: Fundraisers, Information, News and Updates

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Hi! It’s Jeff with a note about the upcoming BE A HERO fundraiser.

The event is being held on —May 19— and many of you have already received an invite via Facebook Events with full details. The fundraiser is in Chicago. Not in Chicago? …or if you can’t make it, please consider a donation. ANY amount is helpful and appreciated!

As a reminder this fundraiser is to benefit my brother-in-law and sister’s family in his fight against MDS. Because of Mark’s bone marrow transplant last month, he’s been unable to work and still won’t be able to earn a paycheck for the next 6 months, or longer. And the medical bills will keep on piling up that entire time…and longer because he will likely be on (very expensive) anti-rejection drugs for the rest of his life. Presently, he has Acute Graft versus Host Disease, a frequent complication of bone marrow transplants.

A little background. A little over two months ago, Mark started his battle against MDS (Myelodysplastic Syndrome; Robin Roberts from GMA chronicled her own fight against the disease recently). He took chemo for about 8 days to kill off his existing bone marrow and immune system. Then he took an infusion of donor stem cells to repopulate his system.

The little buggers are grafting on, but he has developed Acute Graft versus Host Disease in his gut, a frequent complication of bone marrow transplants, and he is reliant upon antirejection drugs for the long-term now. All of this has happened in a very short time frame, but the healing process is much longer. As he undergoes additional biopsies over the coming months and they adjust his medications accordingly, we are hopeful that the donor cells will completely supplant any hiding host cells. The end result is a happy, mostly normal life for him with my sister, Terri, and being able to watch their two kids, Caitie and Kai, grow up.

It sounds simple, but it’s not. It’s a painful, exhausting process and he has to basically rebuild his entire immune system as well as the red blood cells and platelets from scratch now. To put it in perspective, he’s learning how to walk around the block again without passing out.

That’s where he and his family need you. The fundraiser lets you be their hero by showing what a hero is. And if you can’t make it, please consider a donation here in lieu of attendance. Every dollar counts, both emotionally and financially, so ANY amount is appreciated.

WHEN: Sunday, May 19th, 1-6pm (family hour from 1-2pm; adult time starts at 2:30)

WHERE: Nolan Studios, 1770 W Berteau Avenue #205

ADMISSION: $40; your donation at the site below will count as your ticket. (Credit cards accepted).
http://www.giveforward.com/fundraiser/dgz1/supportingthegagnons

SILENT AUCTION:
• Handmade queen-size quilt crafted by mother, Loretta
• Custom-made entry/occasional table along with a plant stand straight from my father’s woodshop
• $50 gift certificate from Pastoral
• Gift from Circuit Mom Productions
• High-end fishing equipment
• And more!

50/50 RAFFLE

ART AUCTION

OPEN BAR AND FOOD PROVIDED

MUSIC by DJ Billy Brown

QUESTIONS: Jeff, 773-575-4786

DONATIONS
http://www.giveforward.com/fundraiser/dgz1/supportingthegagnons

GRAFT VERSUS HOST DISEASE EXPLAINED
http://www.medicalistes.org/gvhd/docs/what_is_gvhd.html

MDS EXPLAINED
http://marrow.org/Patient/Disease_and_Treatment/About_Your_Disease/MDS/Myelodysplastic_Syndromes_%28MDS%29.aspx

BECOME A BONE MARROW DONOR
http://marrow.org/Home.aspx

It’s Friday and I’m only slightly better… So I called to set up an appointment with Nurse Practitioner (NP) Steph. Practically her first words were, “Lets check you in to the hospital.” I say, “Lets talk about this a little.” I don’t have diarrhea, I’m eating well, I just have to go a lot. The Prednizone worked, just not enough. And I really do not want to go back in the hospital, Kai’s B-day is coming up! Hell, I have plans! Mind you Acute GVHD is serious, if I had to go I would go quietly.

So for over a week I was having 10++ BMs a day. NP Steph was assuming I was having diarrhea. So,then she suggested upping the Prednizone, but that is a really powerful steroid to fight GVHD, and I consider what I have to be mild – moderate. Use the big guns when the time comes, I say. Anyway, she then says there is another drug we can try called Entocort, which only targets the gut. Well, lets do that instead, after all its in my gut.

Daily Meds

My Daily Meds

Both Prednizone and Entocort are used for lowering the immune system, and I guess Tacrolimus does the same too. I’m gonna have to be very, very careful. Yep, I have a great white cell count, its 8.0 (I’ve never seen it that high in my adult life). But those 3 meds effectively make it worth 2.0. Think of wind chill factor, its only 20 degrees outside, but with the wind blowing its feels like 2 degrees. Bottom-line: I can’t fight off infections. Good thing I’m loaded to the gills with anti-this, and anti- that. One last mention… sticker shock. Co-pay for Prednizone = $ 6, Entocort = $250! Ouch!

NP Steph says if I am not better on Monday, I should be ready to check in for a stay, so they can fully investigate what is happening in my gut and how to treat it. Saturday – no change, but its one day. Sunday – better 6 – 7 BMs.

Monday – I’m back to regular. And I see my Doc! I really trust my doctor, he’s that good. Anyway, through the long wait-time to see him, I’m writing notes, questions, etc. Doc answered them all and went into detailed explanations (with drawings on the paper that covers the patient “chair”). He laid out the pros and cons of going home. I have to go home sometime, now would not change that. We have to go back each week to St. Louis, for at least a month. And if I get sick, its a two hour ambulance ride, no exceptions!

long road

Its a long road ahead

Side Note – We still have a long road ahead. I know now that being cured is an illusion. Some people get well; the medical team finds the right doses for meds; their Donor’s T-cells treat the Host (me, maybe you) in a “I’m going to ignore you kind of way. Because if you cause me problems I’ll come back and play GVHD on you.” Other people… well there are dozens of outcomes. That is not the path I plan to tread. I’m finding that path to wellness. I’ve treated my body pretty good the past six years, I’ll just do it better and more consistently. I’m lucky, I had time to practice, but I also chose that path too.

I’m Going Fucking Home! Terri cried after the Doc left the office, part in happiness, part in guilt at having been gone so long from the kids. That is really the hardest thing about this whole journey. We Skype every night, but nothing beats a touch or a hug. At the same time, if we were at home during this time, I could not have begun healing while taking care of the kids. Terri couldn’t have either, there is only so many things you can do in a day. Plus, we were at the hospital on average 2.5 times a week over those 5 weeks of being out-patient and stay in St. Louis. Thank you Bob and Loretta, we could not have done this without you! We are going to surprise the kids, they won’t know we are home until they walk in the door when they get home from school.

Unless something happens between now and May 1st, we will be home. That will be Day 54. We can’t wait!

~ Mark

(PS from Terri – This whole thing has been like a roller coaster ride, that you have never been on before, and it’s in the dark. We never know what to expect. Something comes up… is it normal for recovery? is it a problem? I am ready for some steady improvement, even if it is baby steps. Not knowing what to expect and trying to be prepared for anything is exhausting. I keep asking, and the medical people keep reassuring… each patient is different, their recovery is different, the medical conditions they face after transplant are different. So during the first 6 months or so, they are playing with treatments and meds to find the right doses and combinations that are best for Mark. But they have experienced it all, so they aren’t trying to treat him blind. As we have approached this May 1st date, which was our unofficial, in-our-heads, go home date, I have been a mess. Although I know Mark is on the path to improvement, I can’t help having this fear that something is going to come up and put a crink in plans. So hearing Dr. D say we could go home just released such a relief that I started sobbing in the office after he left. And then again when I called my mom to tell her “We are coming home.” Hell, I am dripping tears right now. I just want to go home. I want to parent my children. I want to go to work. I want to sleep in my own bed. I want to pet my cat. I am ready for Mark to keep getting better. I am ready to start trying to remember what normal life is, if there is such a thing. Mahalo to all of you keeping us in your prayers and thoughts.)

stem-cells_1870275cAll had been quiet, doing my routine, eating really well. Well… that has changed. Graft vs Host Disease (GVHD) has set in my gut. Not fun! We went to the hospital yesterday to get IV fluids cuz I’m starting to get dehydrated, and they ran some more labs, and of course they want a sample of what is coming out. TMI?!

Since GVHD was kicking my ass. They upped the Prednizone to help me kick back! We’ll know by Friday. Good news, kidney’s are steadily getting better, but now my liver is spiking. Damn meds!

A word about GVHD… its is a mixed blessing. You want to get it mildly, because it means the donor immune system (T-cells)  cells are working, AND they help destroy any remaining cancerous cells lingering about. I talked in an earlier post how the ablation process (aka chemo) does not get them all. But we want this to be a mild case of GVHD, otherwise it could cause severe problems. Right now we don’t know what is going to happen, except that I am seriously uncomfortable. So if you wouldn’t mind channeling prayers, vibes, and pixie dust my way, I’d really appreciate it.

Here is a great summary of GVHD and its forms, from medicalistes.org (which I think is in France).

http://www.medicalistes.org/gvhd/docs/what_is_gvhd.html

I think Terri wants to add something, so here she goes…

~ Mark

Wednesday

I know I continue to be super-positive and I hope I am not overdoing it. Although, things seem to be improving consistently, blood counts, how Mark feels… he doesn’t feel great. He is nauseous all the time. Has lower abdominal issues… Everyone reacts differently to the treatments for MDS. And what you end up living with is different for each patient. And they tell you the first 100 days are critical to continued improvement. I look at what he is feeling and think, yeah, they told us this could happen. But obviously I am not the one feeling it. And it is hard to tell if it is a temporary thing or what. Is that making any sense? I just know I have to believe that things are going to get better. Having a positive outlook influences how life goes. You have to put positive energy in, to get positive energy back.

~terri

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

~terri

MCj04257800000[1]I think this one is going to be short and sweet. It was a really rough 24+ hours. Mark had a very high fever and very low blood pressure throughout last night and early today. He had a wonderful nurse that we borrowed from the ICU area of the floor that got us both through the night. To add to the fun, let’s just say his brain also wasn’t working quite right. Which is probably okay, because he doesn’t really remember that last 24 hours.

The normal treatment to just push IV fluids to treat the low blood pressure did squat. Finally they gave him adrenalin. That got his blood pressure into an “acceptable” range… but that was it. It wouldn’t budge past that point. So the next things they used this morning were steroids and Benadryl. That finally did they trick although it took awhile. It was a long night with his blood pressure machine screaming (okay, beeping) every 10 minutes. Earlier today, they backed off the steroids. One click back, test the blood pressure, one click back, test the blood pressure, wash, rinse, repeat. Until he was into a normal range.

The fever couldn’t be treated with tylenol or any such thing because of this clinical trial he was on. It got up to 104. Yeah, yikes! He was getting a LOT of anti-biotics, anti-fungals (hehe, Dad I typed anti-Fingals) and the steroids of course. Shortly after his blood pressure was back into the normal range, his fever broke, which I discovered via the mommy test.fever clipart

I can’t prove it, but I blame the stupid clinical trial. I think he was getting the drug and not the placebo, and his body freaked out. What happens when our kids have a bad reaction to a medication? We give them Benadryl. What helped get rid of the fever and blood pressure issue? Benadryl (and a few other friends).

The clinical trial is supposed to be a blind test that runs for three days. Yesterday was the first day, today would have been the second. Yeah, I said would have been. The doctors consulted and decided that he was not going to take the “mystery” fluid today. Makes me think a little more that he was getting the drug, and not the placebo. But hey, I can’t prove anything, I never peeked under the wrapper to see what was in the bag.

They may try another round of the trial tomorrow. (Facepalm!) But they will front load him with the Benadryl and steroids just in case, and then give him a second dose of steroids and Benadryl 4 hours later. This stupid “mystery” medicine/placebo is an IV that takes 12 HOURS to be fully administered. I am ready to pull the plug on this whole trial thing, but if Mark can understand what is going on before they start, then it is his decision.

I will be honest, it scared the shit out of me. It makes me wonder if this is as bad as it will get, or is it just a taste of things to come? Where is that wood to knock on?

angel_14For now he is feeling okay, really tired, a headache, but bearable. Two more days until transplant day. Tonight I am going to leave the hospital a little early and go get some sleep. I am crossing my fingers for a peaceful, uneventful night for Mark.

Which brings me to you, my sweet anelas, I called upon you to bring down the prayers and positive energy, and you delivered. He doesn’t know about all of it yet, but when he gets caught up on his facebook, blog and comment reading he will. Once again, thank you from the bottom of my heart. We couldn’t do this with out you.

(okay, semi short and sweet)

Mahalo nui loa, Terri

confused-by-what-someone-else-is-saying-clipartMonday

10:30 am: Sorry if any of this information gets confusing, I am trying to make sense of it myself. And some of it may be TMI.

Mark started a new chemo drug today. It’s a biggie. It’s called Cytoxin. It is strong enough that he only gets two doses of it. He got his first at 6am this morning and will get the second at the same time tomorrow. It has fun side-effects. It causes what can be described as a severe sinus headache. Mark says it feels like someone hit him in the face with a bat. So he gets oxycodone for that. It helps some. Other main (possible) side effects are bladder issues (as in damage to) and nausea. And for fun it also can cause mouth sores, hair loss, poor appetite (couldn’t be all that nausea, could it?), loss of fertility, and discoloration of the skin and nails. Before he gets the Cytoxin, they give him a pain med, and anti-nausea, and something to protect his bladder.

Blood counts have been slowly dropping, although with the Cytoxin they should start plummeting. And although that sounds scary (kinda what Mark was talking about in last night’s post), that is exactly what is supposed to happen. When those counts start to bottom out he will begin getting blood transfusions and platelet transfusions. He needs those red blood cells to get the oxygen throughout his body and the platelets so his blood can clot. And when his counts are down to zero, we know that all those bad blood cells his marrow has been creating are gone. Then those perfect new donor stem cells can be given a new home and take up residence.

That brings up a another issue. Platelets. A lot of people are good about going and giving blood donations, but something we don’t always think about are platelet donations. The problem is that platelets only live for 4 hours, so there is a constant need for fresh platelets. I know we have been asking a lot from you, but consider being a platelet donor as well.

Being the good scientist that Mark is, every time they have asked him to participate in a study, he has said yes. Insurance has nixed a few of them. But one that taking place started today. It is a medication vs. placebo study. They just hung the IV bag for that. It is all shrouded in secrecy so we don’t know if it is the drug or the placebo (although I don’t think it would be too hard to peek under the wrappings). That wonderful thing runs for 12 hours, one dose a day, for 3 days. While the IV is running they have to constantly be checking his vitals. So he is hooked up to 3 additional wires. Checking his heart, his blood pressure, and his oxygen levels.

Some people are wondering about what it means when we say his blood counts are low/dropping… here are a couple of examples from the day we checked into the hospital:

…………………….Mark        Normal Range
white blood           1.1          3.8-9.8
red blood cells      3.31        4.5-5.7
platelets                51          140-440
hemocrit               37.2        40.7-50.3
neutrophil               .2         1.8-6.6

2:00pm:  Today is not going as well as the others have. Mark is dealing with severe head pain and nausea. They are trying a couple of different medications to counteract that.

3:30pm: Well, they said this drug was going to kick his ass if any has and it did. When you have pain, they ask you to rate it from 1 – 10. Mark could barely get out that his head was at about a 15. The third pain med they tried has finally started to make a dent in the pain and he is actually sleeping right now. He had also gotten really nauseous and what goes along with that. They gave him another anti-nausea drug. Between the last pain med and the anti-nausea med, he started to get groggy and the doctor that came in said that was good and maybe if he could fall asleep that would be a good thing. I tend to agree. I can’t tell you how helpless it feels to see someone you love is so much pain and not be able to do anything about it. I was wishing it was me instead, so he didn’t have to go through it. Anyway I hope they put a big star next to this last set of drugs, so they go straight to them if this shows up again.

One more day of the Cytoxin, hopefully tomorrow is not as bad as today.

Hospital quirk #732 – a little too efficient on the dirty linens pick up. I forgot to bring something to put Mark’s dirty clothes and (brand new fluffy) towels in to take home and wash. So I used one of their blue dirty linen bags. Yeah, someone picked it up and took it away. I didn’t realize until I went home last night about 9pm. So we are down one set of towels and a beanie, and a set of clothes. Not anything that can’t be replaced, but still… Luckily there is still another set of towels and 2 beanies, plus I ordered 4 more beanies from Amazon that I should get today.  Oh well, I needed to make a trip to Target anyway to pick up some stainless steel travel coffee mugs. Yup, my coffee snob wants me to bring him coffee from home in the morning. 😉 Anything for my love.

images

8:00pm: I am sitting in a quiet darkened hospital room, while Mark snoozes. There has been too many things that have happened today and it is still not over. This afternoon he got the chills really bad. While I went to go get another blanket I asked one of the techs to tell his nurse. I didn’t know what chills meant, but it seemed like something she should know. After a consult she gave him some Demerol which did the trick and the chills went away. But we weren’t done with problems. He spiked a fever and then his blood pressure got a little low. The nurse was sure this was from all the drugs he was given today, and he was given a lot. But just to be sure that the fever was medication induced and not an infection they started to run a crap load of tests. Blood from his central line. Blood from his arm to make sure there wasn’t an infection in his central line, a urine culture, and a chest x-ray.

About an hour ago his fever started to come down, but his blood pressure is still low. Not low enough that they want to do any intervention. They really just want to let all the drugs they put in his system today wear off. It just got tested again and it’s a little better. Knocking on wood.

10:15pm: Looks like I am pulling an all-nighter. Fever went back up, although it isn’t totally unexpected. Blood pressure is still wonky. So I am going to stay to keep an eye on things. There is a surfing competition going on in Australia that I can stream on the laptop, so that will help keep me occupied.

Say a guick prayer before you go to bed. And if you aren’t the praying sort, your positive energy will do just fine 🙂

Mahalo, Terri