There is an odd heaviness surrounding me right now. My legs, hips, my arms – everything just feels HEAVY. As if I’m wearing those velcro-on walking weights, as if there’s been an extra 5 lbs added to every limb.
I don’t know what this new symptom means, but it reinforces that
today is a REST DAY, a sitting in my chair and crocheting day.
Gerry and Andy are headed down to Mayo (we just can’t get enough of that place…) because FINALLY Gerry’s been assigned a Mayo cardiologist to coordinate his heart condition with his Multiple Myeloma. We’ve sort of been in a holding pattern as far as HIS chemo goes since March, when he was put on Velcade, and that drug seemed to cause conditions where his two heart attacks (March 15 & 30) happened.
I’ve watched Gerry slowly sinking into a very sad mindset, I know he’s feeling so overwhelmed by weakness, and some days I feel like he’s in danger of just giving up. When he was getting Cardio Rehab he was doing SO well, every day he was a bit stronger, walking a bit longer, just feeling BETTER! I want that Gerry back!
Around the time I was diagnosed with my cancer, in late July, Gerry had another heart pain episode. Not a heart attack, just angina (that’s a silly way to phrase it – there is NO “just” with heart pain!) That really seemed to set him back, and my cancer diagnosis didn’t help matters.
And at the same time, it seemed like he couldn’t get in to see a cardiologist up here through HIS clinic (we have different insurances, different clinics – we’re just weirdos) and instead of me following up on that (as I normally would…) I was dealing with my own health stuff and he was dealing with it right along with me.
So we’re hopeful that this Mayo trip will be the start of a BETTER care plan for him. We want to be able to coordinate his heart AND his Multiple Myeloma treatments so that the left hand knows what the right hand is doing!
Today is mostly testing, then on Tuesday he returns to have an actual VISIT with the cardiologist. Andy is run pretty thin between Gerry and myself, so we are SO grateful to a good friend’s husband who has volunteered to be driver for Gerry to get him down to Rochester and back.
I don’t dare send Gerry down alone. Each time I’ve driven him in the
past few months he’s fast asleep by the time we’re past the city limits,
waking up just as we pull up to Mayo.
I am still Gerry’s caregiver, although not as active as I’ve been in the past. I’m not able to carry as much of the burden as I used to, it’s too heavy in addition to my own healthcare issues.
As I’ve stated before on this blog, I’m not a doctor (I don’t even play one on tv…) and for the most part test results just go over my head. But apparently some of the testing that was done down at Mayo over the past 2 weeks have yielded results that give my oncologist up here at St. John’s, Dr. N, something to consider.
It seems that the cancer is now in
my nervous system, and in* my bone marrow, and that’s not good. Yesterday, instead of getting the spinal tap I usually get (little did I ever think that the words “usually” and “spinal tap” would be used in a sentence involving my health) I was told to just stay home.
My doctor is ‘regrouping’ and I’ll be seeing someone (Doctor? Nurse Practitioner?) on Monday to discuss the route forward for my treatment. During next week I’ll be getting two different Spinal taps, because I am VERY special.
It would be ironic if, after all of the Mayo drama of the past week, I ended up receiving the same chemo cocktail that Dr. T was proposing, but via a different clinic up here (the University or Park Nicolette) Maybe ironic isn’t the word.
One thing I know for a fact, though, is that I HATE feeling like something is growing & spreading, and I’m just sitting here having a cup of tea. The exhaustion I’m feeling is absolutely overwhelming (just when I thought I couldn’t get any MORE tired!) and lifting the tea mug to my mouth takes a Herculean effort.
Everything is heavy these days.
*I was, thankfully, mistaken about this. I misunderstood something my doctor at Mayo had said, but she just messaged me with clarification. Yay clarification!
13 thoughts on “More Weight”
This whole thing just sucks. Thinking of you both.
Among other good vibes I’m sending your direction, I’m thinking levitating thoughts for your teacup. . . . Love, Deb
I’m so sorry to hear about the exhaustion, and I hope that the rest day does you some good.
Your body is telling you to rest, so I think you should! I wish I were there to help somehow, and seriously, it all sucks.
Thinking of you. Feeling WITH you.
If Gerry is disabled on Medicare, maybe you could get a home health aid? Also, maybe Mayo or some volunteer group has volunteers to drive people to dr. appointments? My sister had a volunteer to drive her when she was not able to drive herself due to complications of lung cancer.
Annie – What time is Gerry’s appointment on Tuesday? I have an early morning Mayo appointment on Wednesday, so we will be driving down Tuesday. We usually leave our home about 8:30 a.m. for our drive of about five hours. Bob isn’t home right now, so I can’t talked with him about the possibility of a stop in St. Paul on Tuesday. I have another appointment early on Tuesday, Sept 25, so we will be driving down on Monday, the 24th. I know I will have another appointment in October, but that is not yet scheduled. Maybe we can coordinate appointments.
I just answered you via message, you are SO kind! I’m not sure if it would work out (Gerry wants to be home later on Tuesday) but you are so kind!
There are no words… You remain in my heart.
Love to you, Annie. <3 I'm sorry for the weighting and the waiting…
Lightening thoughts which are pretty useless but hang in there. Your St Louis friend, Lenora
I can imagine the waiting adds to the feeling of heaviness. What a boon it would be if you receive the same chemo cocktail but you get to sleep in your own bed!
Thinking of you, Gerry, Andy and Max often.