Well it looks good… I went on Monday to St. Louis and got my final results of the BM biopsy. I’m cautiously optimistic about the results, but they are positive. I am 100% donor and the FISH test “found” my cells to be “normal”, however they did observe four chromosome 7 signals. I have no idea what that means. For normal people that is within normally accepted parameters. For me… I have no idea. It’s like an ice berg, you can see the tip of it, but most of it is underwater. But that is a problem we can face in a year or two. Right now staying healthy with no infections is what I need to do now. I need to build up my strength, and let my donor cells multiply so that they are all in the normal range. That takes up to a year, and just as important… I need to heal.

We have been very positive through our blog posts, and our lives in general. It is the best way to survive this journey. That is where a reality check is needed for me and you. A bone marrow transplant is not like cancer. Yes, I received chemo, but at much higher levels than 99% of all cancer patients. Not only did it kill all my blood making cells, it also did a lot of damage to the organs in my body. On top of that, due to GVHD and four infections back to back, my blood counts dropped to the point where they were ready to give me transfusions and stick me back in the hospital. My counts are now going up, which we all want to celebrate. But they were as low as you can go. And I have a long way to go to reach “normal” levels, and that is going to take a year, maybe two. I certainly did not think it would take that long, so I need to focus on my health and heal.

I have now not been ill for three weeks and that feels so good. My GVHD seams to be under control and stable. Two very important things to be happy about! Infection is the leading cause of mortality in the first year, closely followed by GVHD (Relapse takes 2 – 5 years to show up). I had both and survived them. Mostly, I think, from a positive attitude and all the support and love from all of you. So thank you once again!!! I know there will be good days and bad days, with rocks in the stream to navigate around. I’m just gonna continue to go with the flow, look for and add ways to improve my health, and let my body heal.

~ Mark

 

P.S. Yep, it looks like this journey may go on a little longer than we expected. Well, this part of it anyway. The whole journey of our lives can go on as long as it wants! This is just a piece of it. And although this darn recovery thing seems to be dragging its feet, its feet seem to be going in the right direction. And I will take any steps as long as they are in the right direction. We are celebrating the small victories because they are victories. 100% donor, Good results from the FISH test, blood counts slowly rising. Yay! I don’t have a lot to add. We just keep plodding along, grateful for every sunrise, for our family, and for all of you! Aloha Hoalohas <3 <3 Terri

juno-beach-pier-sunrise-jellyfish-on-beach-with-shells

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:)

Aloha!

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…

River-FlowThe Past

Well, its Day 156 or Sunday, August 11th 2013, whichever you prefer. Terri and I know we have not updated the blog in quite some time. We apologize for that, but life got in the way. The stream seemed to hit some rapids and time flew by, while it was for us at times a long bumpy ride. We also don’t want to account for every little thing that happens during this journey. Some details are important, some are not. But here is a summary of what has been going on.

The last time we posted I had just been diagnosed with CMV, we caught it early and they prescribed the best treatment (which was IV Ganciclovir. They had a nurse come out and taught Terri and I how to infuse it. And then came by every MWF to draw blood and check up on me. It takes an hour to infuse and for me the side effects were upset stomach and nausea, and fatigue. Nothing I had not dealt with before. Terri began working full-time and the kids and I mostly stayed home. We entertained ourselves the best we could and I attempted to walk around the cul-de-sac with Caitie. There were, of course good days and bad days and none of it was fun, but the end result was that my last blood test showed that I was negative for CMV. So catching it early and being proactive worked. Now we monitor it and wait and see.

The Present

Saw most of my doctors during this time and everything was status quo for the most part. They dropped my Prednisone down from 30 to 25mg/day and are planning to do it again this week. So far the GVHD has not come raging back but my gut aches, like a headache you would take tylenol for. My Doc seemed to think that was ok for now. They took labs once again and scheduled my next bone marrow biopsy for Aug. 14. My platelet count is still bouncing between 20 and 30,000 and we’re on a wait and see treatment plan for that.

I also had a cold sore (or Herpes simplex virus [HSV] – type 1, so they took a sample of that. That sounds like a minor thing and I assumed so too, we’ve all had cold sores before. For you that cold sore is no problem, for me it actually is a problem. My Doc and the medical team did not seem concerned before so why should I be.When I started to get mouth sores and a slight sore throat, I looked it up. Apparently that was a wise choice it, because that lab sample came back positive.. The med team in St Louis did not look over the results of the test. If I did not start feeling crappy (and this was three days after my CMV treatment ended) and looked up my lab reports this could have been bad. A lesson learned and I’m passing it on to you. You have to be your own advocate. Perhaps, this was a case of let’s wait and see, but NP Stephanie did not even know it came back positive!!! and we should treat it. Don’t wait for your doctor(s) to call you, look at your medical records and learn everything you can about every lab result. The internet is a great tool.

Although its not common, in transplant patients if it goes to your lungs, and apparently it does travel through the body, it can get ugly and the mortality rate is pretty high. So I now have contracted four illnesses (three viruses and who knows what that spiked my temp) in two months without any breaks. You can probably imagine I’m pretty worn out by this, my body has not had a chance to recover. So I’m on a bigger does of my regular antiviral, Valacyclovir. The side effects are not pleasant and I feel like crap all day long now. Fortunately, I only have to take it 7 – 10 days, I’m on day 3.

The Future

And again, its like starting all over again, the time when I got out of the hospital after my transplant. It’s been a rough two months. I’m certain the viruses make me feel like crap, but add on top of that the meds and their side effects. I know this all sounds negative, but we (and esp. for me) have not lost that positive spirit. There is too much to live for and I know in the end I will be well. I need to focus on my heath and build up my strength. I have now realized that for most stem cell transplant patients its a long ride, and it looks like I’m in a similar boat. I’m learning to let it go, cuz its the only way to flow.

If anything exciting happens we’ll let you know. And we won’t get the results of the BM biopsy until Aug 29th. So expect an update a couple of days later.

(terri-Yep, it’s been a bumpy ride lately. We are waiting to catch a break. Right now, our flow is a stream with plenty of rocks. But, this stream is flowing to a beautiful lake or into the peaceful ocean. I still know, deep in my soul, that this is part of the journey and we will all come through it stronger and healthier. Now to help Mark re-find his zen…)

~ Mark and Terri

yoga_lady_clipart

 

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

 

Does this look familiar?

Does this look familiar?

This is going to be very short. I got a message from Stephanie, my nurse practitioner about my biopsy I had last Friday. I want to give you all an answer, but I can’t. Because honestly I have no idea what it means at this stage of a stem cell transplant. We see My Doc on Monday, July 1st and there will be a lot of questions and answers. So we will update you when we understand what is going on and what the treatment protocol is going to be.

Donor cells are not 100% like Day 30, but what that means… well refer to paragraph 1. There are other tests and I could spew numbers at you, but again refer to paragraph 1.

Positive:

  • I’m NOT having a relapse, which means that my MDS is not taking over the stem cells in my bone marrow and causing all my complications. We can celebrate that! Yea!
  • Platelet count has stabilized between 21 and 32, which means I won’t have to get transfusions until they drop to 20 or below. We can celebrate that too! Its really not that fun to have a transfusion.

I still have all the complications I did before but I have a routine so I can control the pain when it comes up. If you want to come over, I can share and we can celebrate that too!  I just wish the walls would stop bumping into me (both are a joke, btw). At the same time I can’t leave the house unsupervised, and Caitie and Kai do NOT count. Can you imagine me and Kai driving to the store together to buy something? ROFL!

images-1But all of this is temporary, because My Doc and his team will figure it out and make the adjustments that need to be made. Yes, its taking longer than I expected and we had hoped for. But they know I’m not in relapse and all the other tests will give them a direction for treatment. So let’s celebrate that!

~ Mark and Terri

Urinary_SystemI’m starting at the end of this story and will flashback for clarity, you know like they do in the movies. ;P

Bottom line: I’m not passing blood and the pain is under control. I have a moderate case of the BK virus, which is causing the Bladder/UTi issue. The only way to treat it is to wait it out and dole out pain meds as needed. It never goes away. Today, it is a hell of a lot better. Sometimes you have to wait and observe something in order to keep it under control (pain is like that). It’s hell while you sit and wait, but once you figure it out, pain management becomes just part of the routine. Your doctors and nurses cannot do this for you, you have to do it for yourself; after all, you feel the pain, they do not. It is almost comical that a Bladder/UTI infection can kick your ass like it did to me, but passing blood and clots really hurts. Well enough of the gross stuff.

We have an appointment to have the Bone Marrow Biopsy on Friday. From those results my Doc and med team will be able come with a plan of action. It appears it is one of two things that I just don’t want to talk about, until we get the results. We all will just have to wait, so don’t bother asking. Lastly, the IV-IG treatment is on hold until we get the BM biopsy results, and that is just how it is. Sometimes you just have to go with the flow, and make the best of the situation.

On the flip side at least all the complaining I did yesterday finally got to the right people and I was visited by every doctor with their various diagnosis as to what is wrong. My Doc showed up last, around 7pm, just to explain the why of what was happening. Before this, no-one bothered to inform me of anything except to tell me what was not happening and the treatment was to give me pain meds until they figured it out.

But just like every doctor I have seen over the past 10+ years they don’t come to the same conclusions using the same evidence. For example, one set of doctors says I had and passed a kidney stone, which caused most of the bleeding. Another set of doctors said that was ridiculous and said it is probably the BK virus. Yea… that’s from Wikipedia, but a good short summary for those of you who want to read about it. Being kept in the dark about everything is very frustrating and scary. Treating someone with pain killers as the Treatment Plan signals to me, Palliative Care. I’m not going down that road, and nothing so far says I should be. Period!

Soapbox Time

The real problem was not what was wrong with me, but that no-one seemed to think they had the time for me (or I was not involved in the decision making process – like we time-warped back to the 1950’s). And for some people that is OK by them… it is not OK by me. I have been misdiagnosed too many times to trust the medical profession and their practice; because it certainly is practice and is not science. Not that science has all the answers. But most don’t pretend to have them when they don’t. General Practitioners are almost always guessing, specialists are often wrong when they don’t have enough evidence or too much, and you rarely get lucky enough to actually see an Expert in the medical field. Rant over!

~Mark

The last several days have been a blur. Other than watching Mark writhe in pain, the most frustrating part is not knowing what is going on and what to do about it. The floor doc was sure he just passed a kidney stone (not to belittle that problem, because I realize passing kidney stones is hell). But that didn’t explain the UTI symptoms he had a week and a half prior. And then after we get to the hospital, there is a lot of shrugging shoulders. His regular med team cancels all his preplanned procedures but no explanations why. So we have no idea what is happening or why, other than they are just going to give him pain killers. Mark complained to everyone that had ears that he wanted to talk to HIS doctor and wanted an explanation for what was going on and what we were going to do about it. He finally got an advocate (an inpatient nurse coordinator) that nagged until his primary team called and talked to him yesterday late afternoon. His doctor did come by and sit down with us and talk over everything. (He walked in and said, “I hear you have been looking for me.” Basically they did not want the biopsy done inpatient because they do not do as good a job as his doctor’s team does outpatient. And they want to hold off on the IV-IG until they get the biopsy results and make sure it is necessary. If they had said that on Monday, it would have alleveated a lot of stress and anger.

The floor doc that had originally said this was all a kidney stone, just came in and confirmed, in his opinion, that this all is related to or caused by the BK virus. It causes or has symptoms of a UTI. It caused inflammation and bleeding in his kidney. The ureter and bladder got irritated. He started passing clots which blocked in the ureter (Hello severe pain!).

So the thing is, there really isn’t anything you can do about the BK virus. No meds to take. The body just has to deal with it. The key to keeping it under control and helping to alleviate the bleeding, clotting and pain is a lot of fluids. Mark is going to be drinking about 2 gallons of fluid a day. They are sending him out with 2 types of pain meds. Two different levels, saving the higher one for just in case. The end result of this episode, drink lots of fluids and manage the pain until the body gets the virus under control.

We come back on Friday for biopsy to get a good look at what is going on and what future plans should be.

I am sorry if I have repeated stuff that Mark has said, but I am typing as quickly as I can so we can update you all right away, 🙂

Thanks for listening and being there for us. Your support with comments and good vibes helps us a lot.

Huli pau!

~terri

water bottle

485942_4709598263181_2012131739_nTo take up right where we left off… I’m pretty much maxed out on Prednisone to control the GVHD, but the insurance has finally agreed to pay for the treatment of IV-IG three weeks late (we have scheduled that for the same day I get my bone marrow biopsy). And I said this level of Prednisone has harmful side effects. One of them being I am very susceptible to infection, because the Prednisone is an immunosuppressant, and even though my white cell count is in the normal range it can’t do anything to fight off disease. And that is exactly what happened…

On Friday, Day 91, I called my med team because something wasn’t right. Without going into extensive details, I have a bladder infection. As of that day, it was not painful yet, just annoying. Siteman calls my local doctor and off I go locally for labs and antibiotics. By Wednesday, it is painful and the oral antibiotics have not done a thing and I’m peeing blood and dehydrated. I called my med team in St. Louis again and make arrangements to see my local doc again. We switch over to IV antibiotics to knock down and hopefully kill the infection. I’m on pain meds for the first time since I left the hospital, so I definitely can’t drive. But on the positive side my platelet count is low, but “stable” bouncing around 30k.

Saturday evening changes all that. The pain has gone from bearable with pain meds (Oxycodone) to off the scale. Terri and the kids rush me to the emergency room. It takes two doses of Dilaudid just to get the pain under control and Terri made arrangements with Gwen and Steve to have a sleep over with their kids for the night, so the kids were not stuck in the ER all night. Thank you Gwen and Steve! Terri had already called Siteman ahead of the ER just to make sure that is where we should go, and yes going to the emergency room locally was what they wanted us to do. Boone Hospitatl (local, where we went) called Siteman to arrange a room and transport. I slept through most of the ambulance ride to St. Louis.

So I wake up not in my own bed on Father’s Day, but in a hospital room without my family and definitely not knowing what the hell is going on. I barely remember Saturday, and they say I am going to have some tests done… ha ha! Its Sunday, its Father’s Day, there is no one to look over my tests unless I have to go to surgery, so they opt to control the pain until Monday. I did see two doctors before 1pm, but they did not listen at all to what I had to say or answer any questions. One doctor said, and I quote “let’s cut to the chase”… this is what you are doing tomorrow despite that I have previously scheduled appointments with MY Doc, a bone marrow biopsy and a 4 hour IV-IG treatment. Yes, insurance finally approved that.

I fully understand that my bladder infection is serious, but the biopsy and IV-IG is just as, if not more important, than canceling those so they can take an ultrasound of my bladder. My platelet count dropped again to 21k. I most likely have a BK virus infection which is somewhat common in transplant patients and the most effective treatment is… To reduce the Prednisone, so my immune system kicks in to kill it off and flush my bladder with saline. Almost everyone has the BK virus, but it is activated when you go through chemotherapy. Isn’t that just peachy!

~ Mark

✣ ✣ ✣ ✣ ✣ ✣ ✣

Hi, It’s Terri. It is Monday morning. They just did an ultrasound of Mark’s abdomen and couldn’t find anything that could be the source of the pain. There is a small cyst on one of his kidneys, but they don’t think that is what is causing the pain. They couldn’t find any blockages. We won’t have the results of the test for the BK virus for a day or two. It is a culturing thing. The painkillers are making his brain fuzzy and he is unsteady on his feet. We are now waiting for the floor docs in the hospital to consult with his primary care doctors as to what the next steps should be, including can we do the IV-IG today inpatient, do we go ahead with the biopsy or hold of for a day or two, and can Mark actually talk to HIS doctor. Part of the problem with the biopsy is that Mark has to lay face down and be still for about 45 minutes and that is kinda tough right now with having painful urination every 15 minutes or so.

On Saturday night, thank goodness Gwen dropped everything to come pick up the kids when we were in the ER. I had no idea how long we were going to be there. There was no way they could see Daddy in that much pain, and I didn’t want them just sitting around the waiting room. When they transported Mark to St. Louis, I didn’t think I was up for driving to St. Louis at 11pm. So I just planned to head up in the morning. Mark wanted to see the kids, so I brought them with me and they brought their Father’s Day cards. My parents drove up to pick up the kids and take them back home so I could spend the night in St. Louis. Thanks Mom and Dad. I left the house in such a hurry it is in a very sorry state and nor really fit for company.

The  hotel I stayed at was nice enough, directly across the street from the hospital and gave a discount for people that had family as patients in the hospital. But there was no wi-fi! Can you believe it? It is amazing how used to our creature comforts we get. As usual, I have now hit the babble stage, because I am not sure what else to say. I am torn between staying here with Mark because he is in pain and we don’t know what is going on and he needs me, and going home to be with the kids because they need Mommy.

Bottom line: Mark is in severe pain unless hopped up on super-painkillers. They don’t know for sure what is causing it exactly or how to treat it. He has a UTI that is not responding to antibiotics. He should be able to get his IV-IG today. We don’t know if he will have his bone marrow biopsy today. His platelets continue to decline and there is not a definite answer why. The UTI and abdominal pain is likely the BK virus. The platelet drop is likely the Graft vs Host Disease. We are hoping to get some answers today and hoping the IV-IG treatment will deal with a lot of what is going on.

My head is starting to hurt and I left my ibuprofen at home. Time to go find the gift shop. More updates as they come…

Red_Tape1This will be a short rage against the machine and then an update.

I really hate my insurance company! I was not given a choice of insurance companies when I signed up. I got what the University of Missouri decided it was going to contract with. Some of you may recall back to 2008 when they refused to pay for their part when I was first scheduled to have this bone marrow transplant. They were the secondary insurance company at the time, because I had student insurance, and Terri worked full-time and had them.

Anyway… now, in their pocket friendly wisdom they decided to deny a treatment I NEED, Yes, it is expensive, but it would solve the problem. Instead, I get the alternative treatment with longterm and harmful side effects.

Ben Franklin, who I do admire, said “a penny saved is a penny earned.” This is just not true. Instead of paying for an expensive treatment now, I am far more likely to have health issues longer which the insurance company (and ultimately all of us) will have to pay for. AND if the alternative treatment does not work I have to go back into the hospital! And we know how much that costs per day. I’ve always believed in preventative care, because you end up with healthier people and who don’t need to visit the doctor as much (or have a better education, etc.). And that saves money for everybody. Our society has not fully accepted the reasoning behind this concept. We still think as Ben does… “a penny in my pocket is mine, even if it costs me a dollar later.” Investing now saves money longterm.

So YES… I hate insurance companies with their short sided, profit only motive mentality.

Now the Update: So yesterday was a tad disappointing. We set up for Mike (Giblin) to take care of the kids, so they would not have to spend 12 hours going out to St. Louis. Thank you Mike!

When we got to St. Louis we did not see my Doc, instead we saw a doctor who is part of my medical team and NP Stephanie came in a bit later too.

Bumping up the Prednizone to 30mg worked for only a week. My platelet count dropped again and is now at 32,000; when it drops between 20 – 25,000 I start getting transfusions. The other blood types are rock solid and that is important. WBC was 6.1, and RBC was 3.5. All stable and the white cells (my neutrophils are in the normal range; whereas the red cells are just below the low of the normal range. That is really great and just where we want (or expected) them to be.

Now we have more evidence, all the lab tests have come back negative. There is only one solution left. The GVHD which is affecting my gut and liver is also killing off my platelets. Not good.

There is a solution, hence the rage opening this post. I get the IVIG treatment. What IVIG does is that it coats (or binds with) the receptors on the outside of the cell, so that my donor immune system does not attack it. It does this to the platelets and other receptor cells throughout my body, which are my cells. It is an immunosuppressant that targets the cells and does it very well with minimal side effects. What I don’t understand is why the donor T – cells are killing off their own platelets; they are after all part of the donor’s immune system. But that is what the med team has concluded. They have seen this before and know how to treat it. Like we always said they would be playing with my meds for up to a year (or longer). We really hoped for the best case scenario and I would be off the meds and living a normal life, whatever that is.

So while we were talking to the doctor NP Stephanie comes in and tells us the insurance company denied my treatment, but that they were appealing it and would know in a few days. IVIG is expensive, but it works and with few side effects. AND it lasts up to 3 months. So the only alternative is to up my Prednizone. Now I am up to 60mg per day. Prednizone has some serious side effects that are longterm and harmful to my body. They always try to give you low doses of it, because of this. It acts as an immunosuppressant and is part of normal treatment following a stem cell transplant. But it is the level of the drug and duration that causes the longterm and harmful side effects. But I have to have it. They have to get the GVHD under control. GVHD kills cells. Not to be dramatic, but GVHD can kill me. There are no other options. The donor immune system is waging war on my body. I feel like crap, and it is rather uncomfortable. No-one said this was going to be easy. But my insurance company is making it a hell of a lot harder. I NEED the IVIG treatment. If the Prednizone does not work in the next two weeks or I don’t get the IVIG treatment, I will be back in the hospital in two weeks. Bottom line. We are praying that something positive happens in the next two weeks.

i know this all sounds like a downer… it just is. Intellectually, I know this is just a large hole in the road to navigate around and is only temporary. Physically and emotionally, right now I can no longer see the forest. But I have Caitie and Kai with me everyday, Terri, and all of you. And that is very comforting. So thank you once again, love you all!

~ Mark

P.S. Hi. This is where I am supposed to come in and lighten things up a little and insert a funny. But, I am sorry, I got nothing. I just want to hear the doctors say, “Okay, this is what is wrong. And this is what we need to do about it.” And then the insurance company says, “Yup, those doctors know what they are talking about, let’s go for it.” Check and check. But that’s not very funny is it.

On the upside, baring any unforseen circumstances, we do not have to go to St. Louis next week. They are going to do the weekly blood tests locally, and send the results to St. Louis. And today is Day 90. So, Yay!! Can you believe Day 100 is just around the corner? Even when time is crawling, time flies.

Good days and bad days. Bumps in the road. Sometimes a detour. I try to remind myself and everyone, that even though Every day may not be good, there is something good in every day. But with all of you behind us, we are just going to have to push through. Pardon me now while I go kiss my husband and hug my children.

~terri

Head-Scratcher1

journey-into-fall-louisville-kentucky1Hold tight for a long rambling one… and my apologies; it took me a week to wrap this together.

On Tuesday, May 28, Mark and I went to St. Louis for his weekly check-up. Actually the whole family went. School’s out, so we packed up the kids and their iPads and books and took a family trip to the doctors. We always go in with some trepidation. What are the blood tests going to reveal this time? We have our list of questions. We question every little twitch and tingle. Is it a result of being a living human or is it something related to the transplant or MDS? Is this normal? Is it a problem?

Unfortunately, there are issues. Mark didn’t get to be the lucky 1% that sails through this with no problems or complications and simply recovers. His GvHD of the gut causes problems. His platelets are being stubborn.

So anyways, Stephanie, the ANP, was pleased (if that is the right word). Blood counts were stable and although the platelets have not miraculously bounced back, they didn’t go down either. There was very slight improvement, from 39,000 to 40,000. Stephanie was happy with the fact they didn’t go down, but is still being cautious because they really need to go up.

To help boost the platelets, she wants him to have an IV-IG infusion. IG is immunoglobulin. (Darn, I knew I wouldn’t be able to spell that right the first time. Thank you spell-check.) This infusion seems to also do a host of other good things, as Mark found out while he was researching it.

Of course, it couldn’t be a simple here’s a pill, take it. It is an IV-infusion. It takes four hours to infuse. It is ridiculously expensive, so insurance doesn’t like to pay for it. Therefore, the insurance company is dragging their feet in approving it. Stephanie ordered it a week ago, and it is still pending approval. In fact, it is so expensive; we can’t just charge it to a credit card and hope the insurance company will reimburse us.

Then there is the 4-hour infusion part. When we went to the doctor’s on the 22nd and Stephanie was concerned enough about his platelets to order procedure, they had a hard time scheduling it. So originally we had the doctor’s appointment and labs on Tuesday and then they wanted us to come back on Thursday for the infusion. At a 1:00 appointment. Let me spell out the problem (okay, it isn’t a problem, more like a major inconvenience). It takes a little over two hours to get to Siteman where the doctor and treatments are, and then two+ hours to get home. The kids are out of school. We don’t have a regular babysitter. So they want us to go to St. Louis twice in one week. The infusion would be from 1pm to 5pm, and then we wouldn’t get home until after 7pm. With kids. Bored out of their skulls.

If it was just Mark and me, it wouldn’t be quite as much of an issue. Yeah, we would probably still grumble. But expecting the kids to put up with that much driving and sitting around is a bit much. So then we have this brilliant idea. Why couldn’t we just do the infusion at Mark’s oncologist’s office in Columbia. Sure, they are not the primary care for his MDS. But, they are a cancer center and perfectly capable of administering the infusion. I could drop Mark off, tend to the children, and pick him up when it was done. Guess what the problem is. Go ahead, guess. I will wait.

Insurance. The local office would have just as hard of a time getting approval as the St. Louis office, plus they are at least a week behind in requesting approval.

So anyway, on Tuesday, we were talking about this with Stephanie and asking if there was anyway to make this more convenient. We even asked if they could do it while we were there (this last Monday). Sure, they could schedule it for 6pm. And it would be done at 10pm. And then we wouldn’t be home until after midnight?  With the kids? *facepalm* I guess we could have arranged to spend the night in St. Louis, but neither Mark nor I was crazy about this idea at all. Luckily (?) they hadn’t received approval yet and didn’t know if they would within the next two days, so she postponed the treatment until next Monday, when we have to be there for the next doctor’s visit.

That gives us a little time to make arrangements for the kids to be taken care of and not subject them to forced boredom and patience. They are 10 and 11, there is only so much you can expect.

So where does all this leave us? Overall Mark’s current condition is status quo, with the exception of the platelets. The rest of his blood counts are stable and in mostly normal ranges. No idea why the platelets are being stubborn. Everything they are testing for is coming back negative, so that is why they want to try the IV-IG, to give the production a boost.

Oh, oh! I forgot to say… in all these tests, they did one to test the number of donor cells vs. his own cells that are present in his blood. Results were 100% donor! Yes, that is a very good thing.

The Graft vs Host Disease of the gut is still present and his still has to take his super expensive medication. Talking with the pharmacist, we found out that the drug would cost in the thousands. Per month. Without insurance.  Uh, Yay! Insurance! Okay, yes Yay! Insurance. Without insurance covering all of this, we would be so screwed. To put it politely.

Back to Mark. He has good days and bad days. Good hours and bad hours. A lot of the time he feels cruddy. Nothing necessarily specific, just not good. Sometimes there is a specific ache, pain, tummy trouble, etc. And then we go back to, is this a normal human thing? A normal recovery thing? A problem?

We have also scheduled his Day 100 bone marrow biopsy on the 17th, which will actually take place a little after day 100, but whatever. The plan was to do it early, but then scheduling it around a visit to the Mark’s Doctor just didn’t work out. Anyway, the biopsy will give all of us a good picture of what is going on in body.

And, my goodness, I have babbled on. Have you missed me? Blame it on Mark, he asked me to write this one up. J

Again, thank you to everyone for you love and support, for helping us out financially or with your time. With you all around us, it helps to not feel like we are going through this alone.

Aloha and mahalo!

~terri