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