Lovely health insurance changes and too many damn meds!!

Wow, so my first month of medications have cost a total of $260.00.  That was on the old insurance plan too.  I have no idea what they are going to cost with the new HAP plan.  At least I am off the Decadron now so that’s one less medication I need, unfortunately that one was only about $10 a month.  Jay started a new job while I was in the hospital, so we had to switch health insurance plans right in the middle of everything going on, which has been a mess.  The new plan went into effect on 10/1 and I still don’t have my contract information.  Then we got a letter in the mail from Jay’s new employer stating that they are dropping their HAP plan and switching it to BCN the first of the year, so I have to do this all again in three months, lol.

This really is par for the course for me, as you will come to know from this blog nothing is ever easy for me.  There always has to be some complication.  I tell everyone that I always seem to have to do things the hard way, so much so, that anymore I just laugh at it.  It really has become a running joke, lol.  What really frustrates me is that I went from a PPO to an HMO where you have to have a Primary Care Physician.  Today I found out two things that made me just sigh.  HAP is managed by Henry Ford Health.  All of my cancer doctors are Henry Ford Docs.  So this new plan would actually work out well for me, but now I know I am going to have to switch from HAP to BCN very soon; again with the complications.  Then, I received an e-mail that the new PCP that my oncologist wants me to pick as my Primary doesn’t have any new patient appointments available until mid-November.  Well, I needed him as my doc and able to write prescriptions for me like a week ago!!  So now, I am going to have to see if my oncology office can call them on Monday to get me an appointment sooner.  Which, I know that they will do that for me, but it’s just yet another thing that can’t go smoothly, lol.  Like I said, everything with me is complicated, lol.

Now, back to the meds!  When it comes to medications, I usually get at least half of the side effects if not all of them.  Through my first chemotherapy rounds, I actually tolerated the hard stuff (dose dense Adriamyacin/Cytoxin) pretty well until about half way through.  Then it hit me pretty hard and made me sick enough that I slept through most of it and hardly remember those last 4 weeks now.  The second round at that time was Taxol and I began that in combination with beginning my Herceptin treatments.  That round lasted 12 weeks of weekly IV infusions.  The Taxol itself didn’t cause me too many problems.  I had some of the side effects of very mild peripheral neuropathy (tingling in the toes and fingers from nerve damage) and nail loss.  I ended up loosing my thumb nails and the nails on my big toes, but I was able to keep the rest of them and they didn’t turn black which can happen as well.  So I counted myself lucky in that respect.  Now the premeds that they give you before the infusion of the medication on the other hand wrecked havoc on me.

Taxol comes from the bark of a yew tree, so allergic reactions to the medication are very common.  They stop this by giving you IV Decadron and Benadryl before the Taxol.  As you can see from the photos and my earlier blog, Decadron and I don’t get along very well, lol.  I get all of the side effects from it and go into full on pseudo-cushing’s syndrome from Decadron.  Decadron is also very damaging to your bones, which I now have joint problems from and lots of issues with my spine.  Two bulging disks in my lumbar spine and spinal stenosis (narrowing of the space between the vertebrae) in my thoracic spine.  I am sure my latest round of Decadron has only furthered this damage as well.  Well, with Decadron you can’t sleep.  The first 4 days after each infusion every week it was impossible for me to sleep.  Then I would slowly be able to get a few hours of sleep and would finally get some sleep the day before my next infusion just to start the process all over again!  IV Benadryl would make me sleepy but I got restless leg syndrome from it.  So I would be there for my infusion feeling so tired but I couldn’t fall asleep because I couldn’t stop moving my legs, I looked like a crack monkey sitting in the infusion chair, lol!  Thankfully, the Benadryl effects would wear off in a couple of hours.

Now I’m taking Tykerb and Xeloda, which are oral chemotherapy meds.  These two medications alone make up $166.00 of that medication cost above.  I’ve been taking the Tykerb for 12 days now, 5 pills a day, and I have developed a rash from it all over my face.  The good news is that the rash is an indicator that it’s working well.  In studies, patients that developed the rash live 50% longer than those that don’t.  So obviously that’s a good thing, but I still have this acne looking rash all over my face and neck, which kind of sucks, lol.  I started off on 8 pills a day of Xeloda, which is the highest dose possible.  I made it 10 days on this dosage before having to stop.  One of the severe side effects is diarrhea.  Of course, that’s the one that hit me, lol.  It was so bad and acidic that it burned and blistered everything it touched.  That was even with getting directly into a shower. I now have a new appreciation for babies and what diaper rash feels like!  Ouch!!  Desitin is my new best friend, lol.  So the doc has bumped me down to 6 pills a day.  We’ll see how this goes, lol.

Thankfully, though, I am seeing improvement in my arm function every day.  I went from only being able to move my thumb and forefinger right after surgery to now having full finger movement, wrist rotation, elbow flexion and extension and now I am getting shoulder movement back.  My right arm is still very weak in comparison to my left but strength will come back with use.  My right leg is still not moving, but I know with time and a brace that I will be fitted for once this swelling goes down I will be able to walk with a walker.  Who knows, the brain is a mysterious thing, I could wake up tomorrow with it just working, lol.  Video to come soon of the new arm movement!!