Journal entry by Corrine O'Day Hanan

I pulled up my blog, and was shocked to realize I haven't blogged in so long!  I spent 3 weeks in Mayo last time (March), two weeks in the hospital.  I had to return to the Mayo just two weeks later for followup.  I have GVHD everywhere, including my lungs.  So now I'm on this regimen of breathing treatments and steroids and more meds at night.  My repeat pulmonary function tests came back really good!  Dr. Shah says the improvement is excellent, but it doesn't mean I don't have lung GVHD (he says I do).  At least I have a much better baseline than what presented last time.  I have medicine for the mouth GVHD.  The steroids are improving my muscle aches and pains. The dizzy spells are continuing, and we have no clear answer as to what's causing them.  The good news is that I'm more convinced that they are caused by movement -- when I stand, bend over, reach for things, etc.  The bad news is that they are lasting longer and getting more frequent.  At my next visit at Mayo in six weeks we are going to do a neuro-vestibular exam and check for inner ear issues.

However, the long-discussed trip out to visit with my brother got finalized, and I am here in Virginia with family.  It's been an amazing week.  My brother George and his wife Michele organized a mini-family get-together.  Tina and I flew from Rochester to Virginia, where my dad and his wife Patti, George and his wife Michele, of course, my brother Chris and his wife Linda, my nephew Bradford and his wife Rae and their three kids, my niece Cassie and her son Julian, my nephew Alex and his friends, my nephew Ryan and his girlfriend--and even an afternoon with one of my best friends Shary--filled my week at a beach house George rented.  So every morning I got to wake up to the beach view.  It was awesome.

The challenge I faced most often this week was the sensation of being a "sick person" among a group of "not sick" people.  Most of the time I choose to focus on the things I am able to do, instead of the things I cannot do, in order to stay positive and in order to feel that I'm honoring my commitment to God that I would traverse this journey with faith and perseverance, with no murmuring or complaining.  This week, I have had to remind myself frequently of that goal!

It's not so much that I was faced with all the things I cannot do (yet), but I hated it being so obvious.  "No, I can't go walking on the beach in my bare feet" "No, I'm not allowed in the ocean yet" "No, I can't get into the hot tub yet" "I have to get plenty of rest, so I'm going to disappear and take a nap" "No I can't stay up too late" -- but it also was so apparent to me how little I can do to "help" the others when it's time to clean up the kitchen after dinner or help pick up kids' toys at the end of the day.  The dizzy spells have gotten so frequent and are brought on so easily by movement that I'm not much help with chores.  And, just to be clear, NONE of the family members here had a single expectation that I could help; it's entirely my own perception we're talking about.

The week just highlighted how far I have to go.  I'm still focusing on everything I've accomplished so far; I'm still thanking God every day, several times a day, for still being here, still focused on life, praising God for everything He has done for me.  Last week I had the joy of being able to attend George's church.  His pastor is amazing, whom I called afterward "the real deal."  I was thrilled to be able to give a brief testimony of this last year's journey.  Tina and I fly out Monday, so we will be able to attend church Easter Sunday.

I'm fighting another sinus infection, which is presenting itself exactly like last time.  The cough has gotten worse again, the sinuses are clogged, my left ear is stopped up.  Dr. Shah has called in some more antibiotics for me, so we'll see if they can kick this.  A really bad storm blew into the area, causing us, literally, to evacuate the beach house before the rain started.  Apparently that beach floods first thing!  So we packed up and cleared out in 90 minutes!  I couldn't believe it--how fast things got packed up and loaded.  Just to affirm how amazing God is:  we got home, got the cars unloaded, and had just closed the garage door when the rain came pouring down.  I love it.  God takes care of everything.  Right now we're under a tornado watch until about midnight.  A tornado did touch down in a nearby city, so we had the weather on for a while.

It's been a fun week, and I'm sad to see it coming to an end.  I always wish we all lived closer together, or that I had enough money to make more visits.  George paid for this one, as he did the last, and I'm grateful he has been blessed enough he can do this.  I regret not being able to pay for it myself, but I have to remind myself God has a plan for me.  I have no "need" per se, for anything, but it would be nice to have a little extra in order to do things like go on vacations to see family more often.  :)  First we have to do things like get the property taxes paid, get a car, etc.  :)

This past visit at Mayo was going to be my last monthly visit, in that it's time to get to go to every three months . . . Dr. Shah says "not yet," so I'm headed back in six weeks.  And, just for readers who are post-transplant, cutting down to three-month visits usually takes place before now, I'm just a slow progressor, hahahaha.  I had a bone marrow biopsy this last time, but haven't gotten results yet.  The sample was sent to the lab picked by the clinical trial this time, so it's taking time to get them back.  Next visit will be a regular checkup, plus the sleep study and neuro-vestibular exam.  And maybe THEN I'll get to go to three-month visits!!  I'm sure I will be just as excited next time as I was this time, but even if I don't graduate to every three months, I'll still be just as grateful to God for His work in my life.  Tonight I hope you have something you thank God for every day.  In Jesus' name, AMEN.
Do you appreciate staying connected to Corrine like this?

A $30 donation powers a site like Corrine's for one month. Help keep CaringBridge online for them and for you.

Comments Hide comments

SVG_Icons_Back_To_Top
Top