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

April showers and all...

April showers and all…

Monday

Thank you for joining me in rapping on ALL the wood! I am constantly knocking on all the doors and chairs as I pass them and so far it is paying off.

We had a regularly scheduled doctor’s visit today, of course with labs, and everything looks pretty good. Dr. John D suspects Mark may have a mild case of Graft vs Host of the skin and/or the gut. But before you start to worry, it is not a bad thing. A mild case helps him build immunity to it. So they actually want him to get a little GvHD. Honestly, I can’t see anything in his skin. He has freckles and he is pink. But that is normal. Every once in a while his cheeks get flushed, but it goes away. Tummy troubles are more obvious and a pain (not a pun) to deal with. But it is hard to determine what causes what. Is it GvHD? Is it recovery from chemo? Is it the drugs he is taking?

Oh, oh! And before I forget, the hair is starting to grow back. His head and cheeks are getting fuzzy.

But over all, the doctor was pleased. And we have a target date of May 1st to go home. Pixie dust, do your stuff!!!

So blood counts for today:

—————————-Mark             “Normal”
White Blood Cell     8.0 (up 1.0)        3.8-9.8
Hemoglobin           11.6 (up 0.7)      13.8-17.2
Hemocrit                33.4 (up 1.7)     40.7-50.3
Platelets                  84 (up 10)         140-440
Neutrophil               7.1 (up 0.9)        1.8-6.6

Obviously, things are continuing to improve. But, after all this time of wanting the neutrophil numbers to go up, up, up – they can stop now. They are good.

Somehow, we got it into our heads that he would be getting bone marrow biopsies on days 30, 60, and 90. Turns out that is incorrect. He doesn’t need another one until Day 100! So yay!

Next doctor’s visit is scheduled for April 29th. Cross your fingers for continued good progress. Because if it is good news, we are packing up the next day, and going home the following. (*reaches over for her block of wood to knock on*)

Mahalo for all your continued love, support, emails and everything!
~terri

Psst - guess who won again?

Psst – guess who won again?

Monday/Tuesday

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
~terri

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.

DCP_0855

~ Mark

No matter the storm clouds, the view is beautiful

No matter the storm clouds, the view is beautiful

Wednesday, 8:50am

Sometimes its two steps forward, one step back. While Friday’s biopsy was done with remarkable efficiency. The drugs, the stress, the whatever kicked my ass. It was not until Monday that I felt back to where I was before it.

But today, Wednesday, we get to find out results. Honestly, I’m not nervous… I can feel it, everything is good. I have really no idea what results will be ready when we get there, except if I’m 100% donor, or there is still some of my bad cells left. As I said in the last post, its virtually impossible to kill off all of them. But we certainly do not want them to grow and multiply.

Still doing the routine, and I am getting a little stir crazy from being in the house. I can’t drive, I can’t go out into the sun, without major protection. Apparently, sunlight can trigger graft vs host disease. And while I know I will get some just because, why add to the plate. And this is a good sign, I feel good enough to want to go do something. I certainly won’t be running, or chasing the kids. Something easy and low stress. Any ideas?

~ Mark

Thursday

Life is crazy, you know? You would think that being minus two kids to chase and pretty much being chained to the house, we would have tons of spare time on our hands. Ummm…yeah, no. Hence, why I didn’t get my two cents in yesterday and am posting late.

So the biopsy, all great results! 100% donor cells, no signs of dysplasia. As Mark likes to remind me (and sometimes I remind him), that is from just a sample of the marrow. Who know what could be lurking outside that sample. But you know what, I am going to take it!

Wednesday was labs, doctor visit, and treatment if needed. So they took about 7,000 vials of blood. We got 6-7 pages of test results (nope, not kidding about that part) and basically MOST of it looked good. Blood counts were good. Some are coming down a little, but still acceptable. And some are even in the “normal” range. One little issue though. His kidney function was out of whack.

Apparently, when he had his biopsy done, the doctor’s side put in an order to the biopsy side that they were to give him a liter of fluid while they did the biopsy AND relay the message that he was supposed to reduce his tacrolimus (anti-rejection/immuno-suppresant) from 6 pills a day to 4. WELL, neither of those things happened, which we didn’t find out were supposed to happen until yesterday.

So, he was immediately sent over to treatment for fluids and told to stop taking the tac until we talk to the doctor side again on Friday. And we had to go in this morning for fluids as well. Then tomorrow we go in early, early to get labs drawn and see where his kidney function is now and possibly get more fluids and maybe/maybe not start his tac up again. The tac is kind of a crucial thing so I hope they get this figured out soon.

In the mean time, Mark is starting to feel a little better. He went for a walk yesterday, about 2 blocks, and then walked from the car in the parking garage to all of our appointments. That is a LOT of walking. Then he did it again today. And went grocery shopping with me. This is a lot of walking and exercise for him. After about 15 minutes in the store he said he was done and could he have the keys and go wait in the car. Yes, my dear, yes, you can. You have earned a rest.

Tomorrow after all the med visits, I am driving home to pick up the kids to bring them back here for the weekend. Can’t wait to hug and kiss the kiddos!

Oh! And if just all of this fun wasn’t enough. The owner of the duplex we are staying in has decided to sell it. And found a buyer in 3 days. So we have had inspectors and repair people up the ying-yang trapsing through here for the last week. We aren’t getting kicked out by the new owner, she bought it as investment property and our property manager has a 2 year lease on the place that the new owners have to honor. Monday, they are replacing the “stack”. I think that is like the main drain for the house. So no water, can’t use the drain. They have to tear out the kitchen sink cabinet. The city inspector has to come and approve it, then they have to put the cabinet back and clean up their mess. Guess who is staying in a hotel Monday?

I tell ya, the fun never ends.

But all in all, I am grateful for the way things are going. Knocking on wood that they continue. 🙂 I will try to pop in real quick tomorrow and let you know what comes of the new blood tests.

Aloha my hoaloha!

~terri

 

Why-Just-Being-Positive-Is-BadThe routine is paying off, although I am still fighting nausea after taking my meds. But spreading them out is certainly helping. I’m enjoying my hour of Qigong and meditation in the morning. It really sets up my day positively and with hope. And I am building up my strength by walking. I do feel better everyday, overall.

Yesterday Terri and I went for my 30 day biopsy. Hopefully, they will have results by Wednesday – my next appointment. In this biopsy they will be determining how many of the stem cells are my donor, and how many of mine survived. Yes, some do survive all that chemo, lets face it there are billions of blood forming stem cells throughout your bones.

The trick is getting my new (donor) immune system to seek out and destroy my old cancerous stem cells. That is really what happens over the next 3 to 9 months. The doctors reduce the immunosupressing drugs so that my new immune system destroys them all. But they have to be careful, because that is what causes Graft vs Host disease. That’s when the new immune system attacks my body and can cause lots of problems. So it’s a balancing act my doctor (and his team) get to play with my body.

So Friday was not very fun and I spent most of it in bed or on the big comfy chair and watched a marathon of Big Bang Theory, cuz I felt like crap. Today, it’s Saturday , and it’s a new day… My hip still hurts but I can ignore it most of the time.

Blood counts were status quo, none went up or down worth reporting… And that is a good thing. White cells are just where we want them, in the normal range. It takes about two months for the red cells and platelets to catch up and stay in the normal range. I probably will not need any more transfusions… Grab that wood, as Terri would say, and give it a good knock!

Look for next Wednesday’s post, we hope to have good news!

~Mark

s226358262This is my first real post since I posted my last, A Last Minute Thought. In that post I think some interpreted that I was having second thoughts on doing this. No way!… the last line I wrote was, “Spring, the transplant, is just three days away. I’ll meet you there, take hold of my hand.” I was crossing through to the other side, ready and willing to go all the way.

Well it’s Spring now and I made it through to the other side. When I try, I can remember some of those things that happened on the other side. I will alway remember my transplant night. When Life was given back to me. And when Tim came to town and kept company with me. The rest can stay behind that door.

Later, in a post or two for transplant patients I will go into detail about the experience. I have not forgotten you, its a good part of why we are blogging this journey. I may need therapy afterward, but they have to wait. I’m still trying to heal.

Healing is a slow process. My brain say lets go, go, go. But my body says, “Dude, slow down, you’re hurting me, we have to take baby steps until you can take off.” I guess that is why they tell you it takes most people up to 6 months to heal from a transplant, some even longer, and some never do. Those are the odds, 30 to 40% long-term survival rates. I know I am one of those 3 people… I know that I am going to be cured. So I’m learning to take each day as it comes, and focus on healing.

So I am fine tuning a routine for each day. I take my meds over three hours as I wake up, cuz the alternative is a visit to the porcelain god. I eat a little along the way which helps. Then I try to eat more… it depends on the day. Next, I practice my Qigong and Meditation for an hour or more… depending on the day. Then, I go for a walk and take a nap. I kid you not, this is exhausting, and every step takes will power and determination. Afterwards, I try to eat lunch, then play a game or read until dinner. Finally, I get to spend quiet quality time with my Love.

If I go to the hospital for labs, treatments or a visit, most of that routine goes out the window. Today, we went to the hospital, but I’ll let Terri share that with you…

~Mark

IMG_0551Now that we are out of the hospital, and the children have gone back home, we are trying to establish some sort of routine. I am not sure exactly what that is yet… but we are working on it. I am getting in the habit of sitting at my dining room table desk and getting some work done. Going into the office seems like so long ago, and something I can’t wait to get back to.

But part of this routine is the hospital/clinic/treatment visits. Today was treatment. That just means going and having labs done, which is blood tests, and then transfusions of blood and platelets if needed. I am happy to report no transfusions were needed today!

We thought it would be interesting to compare blood counts from the day he was admitted to the hospital to today and see how far we have come…

…………………….2/27       4/2         Normal Range
white blood           1.1         5.3          3.8-9.8
red blood cells      3.31       3.53        4.5-5.7
platelets                51         48          140-440
hemocrit               37.2       31.3        40.7-50.3
neutrophil               .2           4.3         1.8-6.6
ANC                      260       4346

The big numbers we are looking at as signs of improvement are the white blood cells and ANC. And as you can see there is huge improvement there. So keep knocking on wood and blowing pixie dust, because it’s working and things are looking good.

Next medical visit is on Friday, so I will update you more then.

~terri