64. Ups, Downs. . . a Few Loop-the-Loops, Such is the 1st Year post-HSCT, and toward a "no moss" year ahead. . .
Вре́мя -- лу́чший до́ктор
Time heals all wounds.
Видна́ пти́ца по полёту. A bird may be known by its song.
Literal: The bird is known by its flight.
Literal: The bird is known by its flight.
Three months have gone by since last time I posted.
I spoke just a bit too soon in my last posting. I was so thrilled to see my blood cells hit the normal ranges, I completely overlooked the one very important one - IG levels. And turns out when I asked to have that tested, I learned that with a normal range of 700-1600, mine were only returned to a rather disappointingly meager 225.
Before I knew that, though - So thrilled was I, in fact, I booked a few lovely trips to celebrate my 1-year immune system birthday (1 year from the date of my stem cell transplant 'zero' day, or the day my stem cells were re-introduced to my body to begin their work.
Since a 225 isn't anything to depend upon in fighting off either bacteria or viral infections, I realized my folly.
So what to do? Well, I'm about to go for my 2nd IVIg 'booster' of immune globulin from others to augment my own while it continues to populate and climb in the rankings 'til it gets to that magical "normal" range. My new Dr, a hematologist/immunologist I really like, is helping me with the details of those booster infusions and hopefully my own IG levels will come up over time.
Meanwhile, I am going for IVIg at about 3-week intervals, or at least a day or two ahead of travel. Little enough when considering all the treatments/Rx of the 3.5 years of active CIDP. But it did feel like a set-back and I'm still a bit cautious. Can you say "germ-a-phobe"? I fight the urge to stay in, not go into crowds. I am working on that.
Travel is the balm of my soul:
My husband and I just returned from the trip he gave me for Christmas: Miami for several days and a Western Caribbean cruise since we've neglected our experience of that part of the world. If I'd known I was immune-deficient still, I would have opted for another destination. What in the world good is the Caribbean barrier reef if you are not yet able to safely swim in it, dive, snorkel, enjoy that azure blue water?
And in fact, in spite of the IVIg boost, which consisted of 40gr delivered on a single day ahead of travel, I ended up coming home with the virus my husband caught on ship 3 days ahead of me catching it from him. If I didn't love the man, I'd probably hate him. It was a mean virus. But I will say that I think he had a worse bout of it than I did so I'm thinking the new immune system is working well. I did run a fever around 102 for nearly a week (my normal temp is 96.8) and it really did flatten me. I don't normally just go to bed with a virus, but it made anything but that just impossible. But I didn't die, and now I have only a residual cough. You bounce back pretty well from that post-HSCT weakness that hits with illness.
But I can clearly add my 2 cents worth to everyone's experience of how an illness knocks you flat after HSCT.
There, got that disclosure out of the way.
Now let's talk about the good stuff:
My energy is nearly back after the virus, and that would put me back to pre-CIDP energy levels.
I am healing prior nerve damage, not getting more. I still have more leg/hand pain and numbness than I did when I left for Moscow last year at this time, so I attribute that to the injury of chemo. It is not a party, to be sure. But I feel certain it will rectify over time.
I'm a die-hard optimist, and not only am I certain my CIDP is gone and my new immune system is functioning and gaining ground, I can also say that it has been so so worth it. I have had a good year - even with roller-coaster ups and downs, far better than the 3.5 that preceded it. HSCT was the right decision, and I would advise it to anyone whose health can be restored to them - autoimmune illness sufferers whose disease is in the list of about 26 now being treated with HSCT.
I have grown hair! YAY. Yes, I have had haircuts even, trying to even it out into something resembling a style. Not quite there but you can see I do have curly dark hair that might be slightly thicker than my sick/CIDP hair was before HSCT. The little bit of gray that frames my temples and face is there, still, but it's not worse than it was before chemo. LOVE the curl! It gives me a little body I have never had in my hair. Who knew? I might have had chemo sooner if I'd been aware of how much easier hair with body is. Now this photo was taken after I'd been really sick for 7 days running, so cut me some slack, please. But you can see I do have hair now - see it comes in before you know it.
In fairness, below is how I looked in January, so it's coming in faster now, too:
Don't worry about the hair thing - it's temporary. Today I gave away several wigs I'd bought and never did wear. I had one I liked and which got me through all the days that required me not to be bald, but the hair thing has been much easier to go through than I ever would have imagined. It's surprising how your priorities right themselves when it's your basic health at issue.
A rolling stone gathers no moss:
Next week I have my darling littlest grandson (and his parents) coming for a Spring Break visit. THIS little guy feels like part of my healing challenge because I've wanted to be flying to see him in Denver and just have not had enough time with him. So many things in the way. Fire. Did see him when my Dad died/funeral, of course. And a visit there in the mix. He was ill, then I was ill. Time goes by.
So he's now a whole year old and I've only been around him about 10 days of that entire year. That's a horrible loss to me, and one I intend to make up for. Look how cute he is by now - far cuter than my hair and he grew this cute in the same amount of time it took me to get HSCT and a bad hair-do. (smile).
The day after he and his parents go back to Denver, I'm on a jet to Europe with a relaxed happy itinerary of 6 weeks. I think on the day my immune system turns 1 I will be in Berlin. I've never been to Berlin, so that will be fun! Looking forward to the trip, and mostly to knowing I can get back to this part of my old life. IG levels - hurry up! Meanwhile, a little IVIg is just what the Dr. ordered.
I'm taking all my family on vacation this summer. We decided we'd enjoy NYC and Washington DC together this time. Twelve of us - I rented a big house in Washington DC so we can all enjoy each other to the fullest.
We are so fortunate to have one another, and our health.
Be well! Have a wonderful Summer!