I’ve decided morphine is not my drug.

Jonathan has been so nice keeping you up-to-date – he probably knew if a keyboard was put in front of me, there’d be some crazy stuff on my blog. 🙂

The truth is, that I really don’t remember all that much. Which is really a weird preface when you just went in for a doctor’s appointment.  I remember my mom and I met with one of the stem cell MDs. We discussed the rapid decline of my lung function since August – it is so bad that I have to catch my breath if I get coffee in the morning, move laundry from washer to dryer, etc. It was a Friday and the doctor recommended scoping my lungs and getting a biopsy. We already had scans, xrays, function tests, but finding out if this is Graft vs Host Disease for sure meant getting a biopsy. We totally agreed and I immediately was admitted into the hospital for a Saturday procedure.

Let’s get to the interesting stuff. The tiny little piece of bronchiole was easily biopsied and found to be definitley GVHD.  And then. They tell me I coughed twice and caused a pneumothorax which collapsed my right lung.  This happens 1 in 250 people – and of course it was me.  They got me fixed up and inserted chest tubes hanging out of my sides.

I don’t remember being in recovery. My memory picks up with the many tiny 1-inch babies in the folds of my blanket. I was trying to get them comfy then it sort of faded away. Jonathan and my mom said it was a crazy experience. Every day from 4pm to 3am my craziness crept out. I renamed Jonathan, “Skippy” and unfortunately I told Jonathan that, “My father doesn’t like you.” (which is far from the truth) I also reverted back to the 1990’s, single, no acknowledgment of marriage, even my name was totally different. Small creatures would dash around my peripheral vision, then disappear – that was very distracting when my medical team was talking to me. They didn’t know these little beings were all around them. If you know me well, I’m not much of a fighter/arguer/ conflict person. But I lost it when I needed to use the bathroom and both Jonathan and my mom wouldn’t let me go. I see the door, I know where it is, and I’m headed that way. (I thought I was in a waiting room.) They said, “No, come this way.” Etc, it went back in forth I was actually yelling and grabbing at their wrists – I can’t explain to you the frustration and anger I was feeling. They wanted me to use a bedside potty! Jonathan said they were trying to explain to me that I had too many lines attached to me and we couldn’t reach the “real” potty.

Man, this disease has really ripped my modesty and pride to the core. I had to give in. I don’t really mind my mom in this situation (afterall, she is my mom and she’s a retired RN, as well), but prior to this sickness I had never even told Jonathan my weight, now there’s no stone unturned.

Later, I told Jonathan that there were a lot of people standing around us.  Hmmmmm. He thought perhaps this is spiritual and they could be angels you normally can’t see.  Then I told him about all on the ham sandwiches in my bed.  So he wrote that idea off. 😉

So, my overnight in the hospital turned to a week in the hospital. The pain from the chest tubes and the sensitive locations they were place left me in writhing pain, but the tubes eventually came out and I was able to return home.

It seemed like so much happened the week I was gone. My baby turned 14 and had a casual party at our house. It was run by my dad, Jonathan and my sister-in-law. I guess it all went well. AND our house was decorated for Christmas when we returned. My dad and my sister were the big players for that.  All the things that I stress about were taken care of just fine.

Jonathan’s parents were the next group to help out. We had a nice Christmas together, and it is so nice to have a mother-in-law who is an expert meal maker and house cleaner (and a retired RN as well).

My parents have decided to rent an apartment in town, so that they can help a lot, but all of us can have a little space as needed. It will also serve as my escape place in case someone gets sick in the house. We have strict germ rules, bc any illness sets me back on healing my lungs. Each cold is an insult to my lungs and delays the treatment I need. The fact that my immune system is suppressed makes it very dangerous for me in the midst of flu/cold season.

Onto the bionic eyes – something good, yay!  So my donor’s immune system is currently attacking my lungs and eyes.  My eyes are horrible! I’ve had dry eyes for years now, and I was treating them with artificial tears, and remember the right eye had a clogged duct so all moisture in my eye ran down my face. I looked like I was perpetually crying. I even had people stop and ask if they could help me.  Well, a few days before the surgery the radiation-scarred duct suddenly opened! No explanantion for that except prayer. Just amazing.

So my dry eyes and GVHD have hurt my vision, been painful with roughness in my eyelid, and often nothing can be done except drops and close my eyes. I’m actually typing with one eye closed.  At Vanderbilt, we’ve tried different moisturizing drops, flaxseed oil. Later we moved onto 3 different steroid drops – finally found one that worked and even got steroid injections into the inner lower lid. It has been truly debilitating. I’ve learned that breathing and vision and living pain-free are pretty important and a great blessing.

These lenses are called scleral contacts. Not many eye doctors do it, and it is very expensive – bc insurance looks at it like it’s not medically necessary. But, we decided we had to go for it for my sanity and quality of life. Thankfully Vanderbilt is helping us some and the OD is giving a cash discount.  I was fitted last week and oh, my just getting try some on was heaven for my eyes. These will provide full-time moisture and correct my vision.  I have to wait for the lenses to come in a couple of weeks and then there are more fittings, tweaking etc.  I Can’t Wait! I will be able to stop squinting, closing my eyes, doing drops and will read again!

So there’s about a week in there that I can’t really account for, but I believe we got some good answers and some plans moving forward like a possible clinical trial for GVHD, and my eyes will soon be a non-issue.  Our holidays were nice, we enjoyed all of our family, I enjoyed all of your cards and pictures, and thank you to those who have been kind to bring us food or helped out in other ways. I’m bored, restless and impatient most of the time, but I never feel uncared for – just loved. The Lord has been good to me even at my lowest and the love you all have showed me is overwhelming.

I’ll keep you posted on the next happenings. I forgot to mention that I’m on oxygen 24/7, so if we get to see each other, don’t be shocked. Hopefully that’ll be one of the things that will improve before long.