I’m not sure where the time has gone, but I can’t believe that I haven’t written since my December discharge from the hospital.
The few months around the holidays and after are a bit of a blur, and I’m thankful that they are. Next to the fear of a cancer diagnosis with an unknown prognosis (I’ve been in remission for 2 years now!), these last months have been the most uncertain and harrowing. It is hard to put into words all that has happened, but in many ways it has been harder than the deepest throes of my cancer treatment.
As Jonathan mentioned, I was having increased breathing trouble, coughing, pain etc. I went into Vanderbilt for a lung lavage (wash) to see what microbes may wash up. My “lavage” team likened it to water boarding – I actually saw the humor in it too, so don’t be turned off – they were a great team. I had chosen this washing instead of another lung biopsy because the previous lung biopsy had ended in a lung collapse and somewhat of a downward spiral.
The results from the wash showed a fungus, aspergillus, had infected my lower left lung. It is something most people fight off naturally but with my continued suppressed immune system and Graft vs Host Disease of my lungs, it easily evolved into a nodule. While admitted, they began IV treatment (as Jonathan also mentioned earlier).
I realized during this hospital stay that I’d never had a full-blown panic attack before – I’ve had anxiety attacks that were scary enough, but these new attacks were horrific. They were happening several times per day, and there was nothing my care team could do except try to calm me down with their words. My mom prayed and held my hand, and some special nurses tried singing to me (sounds crazy, but worked) even if it was, “right now I’m adjusting your pillow . . .” I was hyperventilating like crazy for minutes upon minutes – maybe 45 minutes, I have no idea. I thought my body was going to give out on me at any time because I was so fatigued and frightened.
Jonathan mentioned a scary moment a few posts back. I have no memory of it, but he says I said, “I’m dying!” and then I immediately went stiff and my eyes were wide open. He called for help and a doctor came in and yelled my name a few times and I woke up.
Along with the panic attacks, my medicines were being overhauled and I experienced agitation to the point I finally knew clinically what that word meant. I experienced never-before feelings that I couldn’t live like this.
On top of the mental distress, my body had gone completely weak from the many days in bed. I couldn’t sit up and I could not even move out of the bed to use the bathroom. When I did gather the strength to move to the bedside commode or chair, it would trigger a panic attack – so I wasn’t feeling too motivated about moving. But, I knew I must continue to push myself to make it home and get better.
I was more than thrilled to be discharged from the hospital on March 10th. There is nothing like be disconnected from all of the wires and IVs. Even if I could barely make it to our bedroom bathroom when I got home, I was improving slowly, and that’s exactly what my doctor continues to tell me: be very, very patient. AND I haven’t had a single panic attack since the hospital.
I had physical therapy and occupational therapy see me at home for more than two months. I continued my 24/7 oxygen and my wheelchair when leaving the house. I barely left the house, but I did need to go to doctors’ appointments at the hospital and I had some sanity outings to the movies and restaurants. I’ve made progress through therapy. I can walk up and down our main stairs, walk laps around our downstairs, do some laundry and some dishes – they are all ordinary things, but exciting to me even if I have to take many breaks.
I began outpatient PT last week. We are slowly progressing with exercises, but I made a huge accomplishment at my hospital visit last Friday. It had been months since I hadn’t used my wheelchair to make it to my doctor’s clinic, and this time I walked it with resting only one time! While I was there we discussed and I consented to a drug study for a medication that may help with Graft vs. Host Disease, which I have of my eyes as well as my lungs. My special scleral contact lenses have helped me a ton with my eye symptoms, but as soon as my lenses are taken out every evening, I’m back to the dryness and discomfort that leaves me with one eye closed. Thank goodness for the lenses.
We are having a good summer! My parents continue to rent an apartment in town so they are able to help us out with various needs almost every day. Our girls are visiting with their great grandma and great aunt this week on the coast of South Carolina, and our son is with my parents visiting their home and then off to see my aunt and uncle and my sister’s family in Atlanta. So, lots of good summer activities for them. Jonathan is working as usual and trying to get in a little extra hiking while the kids are gone, and I’m catching up on my blog :), getting PT, catching up on some paperwork and helping with finances for Jonathan’s business. I think we are all having a nice change of pace for a bit.
Thank you for your prayers and messages. They mean the world to me, and I can’t ever be reminded enough that God has this.
