Husband FINALLY got last O infusion after Neut... - CLL Support

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Husband FINALLY got last O infusion after Neutro bump in the road!

lisakc1 profile image
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Promised update! Husband's Neutrophils went up to 5.38 after 4 GCSF injections, so last week he received his LAST infusion! Party time??? Not so much.

My husband got Omicron pre-O+V treatment last Christmas and was down for 3 weeks... Neutropenia meant that he was even MORE immune compromised now than he was then. These silent conditions make me nuts. Will it return? When? If? How? So many questions that only labwork can answer. This means that we BOTH have modified bubbles once again. Mine is larger than his, but I stay masked indoors; after all, why not? Who needs to catch something and spread it to others?

After many dreary winter days, heavy rains, weeks without sun, fighting the prospect of enjoying life like the "good old days" was a struggle for certain, fighting disappointment is never easy.

We are avid 49ers football fans, and our wish was to go to a playoff game, especially after 6 months of denying ourselves the pleasures of joining our friends and family during the regular season. I could NOT get myself to purchase tickets to what I was sure would be the very kind of event an immune-compromised person should avoid. Our big-screen TV has become our new best friend.

While we are blessed beyond words to live in an age with immunotherapy treatments like this, I have to say, extending our pandemic bubble does take a toll on everyone involved. My sense is that we are currently living in a "pandemic denial" age. It's not over. After seeing the HOARDS of cheerful crowds and our friends attend the event, I was sure we made the right decision. ARGHH!

On a more positive note, our journey continues!

Weekly bloodwork has been scheduled, and the halfway treatment mark has been passed!

What we have learned:

Neutropenia - Claritin is your new best friend; take it BEFORE each injection and one week after the final injection. It WILL get better

Celebrate EACH milestone... we did it with lobster tails in front of our big TV!

We will attempt an outdoor amusement park in March, where we can manage our crowd control and enjoy the sun.... reservations are completely refundable if necessary.

It's OK for everyone and anyone to feel down. After all, we have just come out (?) of a Pandemic, for goodness sake, and who doesn't want to spread their wings?

Spring is on the horizon, the sun is shining, and another day is crossed off the calendar to, hopefully, a UMRD conclusion of his treatment.

Many thanks to all on this forum who brighten our days with knowledge and keep our hopes high!

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lisakc1
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LeoPa profile image
LeoPa

I keep masking indoors too. There are fortunately many ways to enjoy nature in solitude. I hate crowds anyways to the point where I don't even do shopping before the holidays, which I find to be quite a blessing these days. If there is more than three people in one spot it's a crowd for me 😁

PaulaS profile image
PaulaSVolunteer

Sorry to hear your hubby's story, Lisa.

Adjustments to life in a "post-pandemic" (or not) age isn't easy. It can be more complicated for a partner of someone with CLL, than the patient themselves.

So glad you could say "Spring is on the horizon, the sun is shining, and another day is crossed off the calendar to, hopefully, a UMRD conclusion of his treatment."

I hope you enjoy your trip to the Amusement park in March. May you both stay safe and ENJOY it.

Paula

lisakc1 profile image
lisakc1 in reply to PaulaS

Thank you Paula... so true. I sometimes have a bout of "survivor's guilt", guilty over my disappointments when I'm not the one going through treatment. So happy that autumn and winter are behind us. I find that sunny days just make everything better!

PaulaS profile image
PaulaSVolunteer in reply to lisakc1

Lisa, you've made lots of sacrifices to stay in a bubble for your husband's sake. That's a very big thing and probably saved his life... :-) No need to feel guilty about struggling with disappointment at times (though I understand why you do). :-(

Yes, sunny days do lift the spirits. They also open up more relatively "safe" meetings with others outdoors. Friends are happy to sit and chat outside in the summer, but it's harder when cold winds are blowing and there's snow on the ground! Here in Sheffield, the wintry weather hasn't quite left us yet , but it won't be long now...

Paula

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