Energy Levels

Still, at home and all is going well. I was able to go in to work today for a few hours and that felt good. My energy level is still depleting. The best way to describe how this “energy” thing is working for me is to use the analogy of a battery. I start out the day feeling pretty good and everything is in working order, but as I do more and the day moves on, I use up the power. If I take things slow and conserve my power I can get a longer lasting day. Like before, nothing particular is wrong I just feel “wrong”. So my biggest daily decision is to decide how and when I use the energy I have. This is tough for me, the past many years I have been working so hard to train my body to handle harder and longer adventures. It takes a lot more effort than you would expect to change the mentality of just “push through the pain”. I am sure I will learn to adjust better and I try to remember this is just temporary. For now, I just need to watch my power levels more often and remember to plug in every now and again (naps) to keep my battery changed.

Lastly, I get a PET Scan Friday and see Dr. H. Monday for the results. Will update the blog once we have news.

Round 2 ICE treatment day 4 home at last

Nothing to report tired, very tired, but home and happy to be there. Next step doctors appointment Monday maybe more news then.

Round 2 ICE treatment day 3

Not too much to report today. The treatment is going OK. I am back to the “just wrong” feeling again, but like I have said before if that's all I have to deal with I will consider myself lucky. The only real change is that I am once again getting the Lovenox shots, twice a day. These shots are to help stabilize my blood thickness. Now that I am back in the throws of chemo, the medication (cumidin) is hard to manage and so is my INR (blood thickness). Since it is at 1.4, a bit too think, it should be between 2 and 3. The lovenox will help keep things in check until the INR is back to an OK level. Oh, the other thing about the shots is that it is every 12 hours 1PM and 1AM, so it turns out to be one more thing to keep me awake at night. These days of only 4 or 5 hours of sleep are turning out to be the hardest part of the hospital stays. Speaking of hospital stays, it looks like I will be able to get out of here some time after noon tomorrow, yea for me.

Round 2 ICE treatment days 1 and 2

Sorry for the delay in getting an update out for day 1 of this treatment round. As it turned out, things got going very late in the day yesterday, in fact, I was not in a hospital room until after 4 pm. Then today was full of computer issues that have shown its really time for a new laptop PC.

Anyway, here is the news, first off after several phone calls and quite a bit of waiting, we have learned that this round of ICE is approved and will be covered, hence that's why I am here (in the hospital). The big issue has to do with our first round of the ICE treatment. As it turns out that first hospital visit and treatment never did get authorized. It is still a mystery as to how the hospital did not notice that there was no auth: but that has to do with the first round which was in 2011 and observably we are now in 2012. We learned that my insurance has changed their contracting/approval company. So the first company (2011) says this procedure is experimental and is not covered in my plan. While the second company (2012) needed a bit more documentation from the doctor, but was OK and understands the medical necessity for the procedure. In fact, there records do no even show ICE as an experimental treatment. In the end, we still need to work with getting payment for the first round but at least we will have something to stand on. It just doesn't make sense- if one pays, why wouldn't the other?

I know this has been 2 post with a lot of ranting about insurance, but its what has been going on. The chemo stuff has actually been easier than dealing with insurances and doctor offices. Now as far as this ICE treatment goes... We once again got off to a late start. With not getting a hospital bed till after 4, I knew things would be getting started late, but I would not have expected the first drop of chemo to not start until midnight. Its not like you have places to be or really things to do, but this is not a treatment that they just put on autopilot. Remember its midnight and all you want to do is get some sleep. The treatment requires a lot of nurse intervention. Things start with a 15 min IV bag of premeds, followed by 1 hour of chemo. This dose of chemo must be watched very closely as it can lower your blood pressure to dangerous levels. So every 15 minutes they stop in to check you blood pressure. Once the chemo is done they hook you up with a IV fluids that must run continuously for the remainder of your stay. The great news is that these additional fluids are just enough to fill you bladder every 2 hours, thus you are up for a quick trip to the bathroom just as you begin REM sleep. Oh they also stop by to draw blood at 4AM every night so that the results will be available for any early doctor rounds. All in all, I got about 4 hours of sleep and never more than an hour at a time. Aren't hospitals fun? To end this, I will say that I am doing OK and am happy to say that my body is handling things well, all good news.

ICE treatment round 2 (delayed)

Well it has been a fun day (not really)! The issue this time has to do with insurance and authorization for the chemo treatment. As of yesterday, my insurance has notified us (via snail mail) that I am not authorized for this type of service and that they will not be covering my PREVIOUS hospital stay and chemo. Needless to say, we went into overdrive today trying to figure out what was going on. Seeing that I was supposed to return for my second round of ICE today, we wanted to get some answers before we got into even more insurance woes. So after several calls to my insurance company, may case worker (provided by my insurance), the hospital and a visit to the doctor office (with both the doctor and the financial office) we have a bit more confidence that this is all just an insurance hoop that needs to be JUMPED through. My case worker is trying to get the necessary documentation from the doctor to justify the services and help me get the authorization approved for tomorrow. It is not like this is a new treatment: ICE has been around at least since 2004 and its not like we have an option here. According to Dr. H and Dr. S (from Mayo Clinic,) I need this treatment in order to get ready for the transplant. So we have rescheduled for tomorrow and will hope for the best with the insurance.

As long as I have your attention, I should give a bit of an update. Last week really went well. Every day I felt better / stronger, my blood counts have been increasing steadily. We even added daily neupogen shots to help boost the growth of my bone marrow (which in turn boosts the blood count numbers). The only issue had to do with the last neupogen shot. To prove that I do not understand everything medical, the issue seems to stem from me missing taking Claritin (allergy medication). For some unknown (but well documented) reason, claritin helps with side-ffects from the neupogen shots. I quickly learned how much it helped as I couldn't even sleep Friday night. I just had a constant pain in all my joints and bones. You see the neupogen can cause such a rush of marrow growth that it literally pours out form your bones. As you might imagine, it really is not a pleasant experience, the Claritin was a life saver, but I just didn't know it. All in all, the pain lasted for about 24 hours. I am fine now, but I WILL NOT forget the Claritin even again!! To end on a positive note, I can report that I was able to go in to the office for a few hours today. It was not much but it was nice to see everyone and be back my desk.

Want to be a stem cell / marrow donor?

Hello all, I just learned that the American Express credit card company has created a grant for the “Be The Match Registry” to cover the $100 donor registration fee. Although I have already been matched, I still would encourage anyone interested to please take a minute or two and register. All you have to do it follow this link, fill out a form and mail back the “cheek swab kit”. You do not have to get any blood work or even leave your home. The “Be The Match Registry” site might talk about donations, but I say let American Express pay for this one and save your donations for other great organizations. If you have any questions please feel free to contact me and I will do my best to get answers.

http://marrow.org/Join/Join_Now/Join_Now.aspx

1st Update of 2012

So just an update. The big news is that I was able to make it home after my 3rd day ICE chemo treatment (that really took 4 days). I entered the hospital on Tuesday around 9 am but didn't get discharged until mid-afternoon on Friday, so this had a bit of angst to get back home. Not that I had anything to do (or could do) at home, as you all know it is just better to be in “your place”. It helps that at home you are back on your own schedule, no nurse visits, no labs, no beeping IV poles. Right now things are going OK, we had a visit from the Home Heath nurse yesterday where Karen learned to help me out with some pick-line flushing but truly Karen is my “go-to” nurse, she is taking care of everything. The last 2 days have been pretty uneventful; we have made a quick run to the grocery store and did a very short walk to the park, but really I am just out of sorts. I cannot describe the feeling at this point: other than to say that things just feel wrong. Not any one part of me is wrong, its just the general feeling over everything. Not that I like this feeling but I am sure it could be worse. If this is the way things are going to be for awhile then I have to consider myself lucky.