Too much driving, so many tests....

This is a mixed bag of on and off topic. I've been to see one kind of a doctor or another on pretty much a regular basis of late.

I wanted to share something that first, made my jaw drop, and second, (the CP part), is kicking in more-so.

This past Wednesday I saw my medical oncologist who informed me that there was one marker of my cancer that had her concerned, and she wanted to order a test called an OncoTypeDX. IF I agreed to the test, that means I had to agree that if it came back with a high score, I would agree to the chemo therapy regimen (of 3 cycles of chemo).

Otherwise, we'd be guessing,...in that the surgery removed the cancer, the radiation will destroy stray localized cancer cells, and the hormone therapy is to decrease my chances of it reoccurring. Of particular concern to her was a negative marker indicating this could spread through my system into other organs.

This test, (get ready for this), cost $4,380.00. It takes 14 business days to complete before I get the results.

My radiation therapy starts in about 3 weeks time (after these results are in).

I'm beside myself.

As for the CP, and it's only just begun, I'm having 1-2 appointments per day, between doctors (of all sorts), PT, etc. When radiation starts, that's daily drives 40 minutes each way. I haven't even reached that point and my back and hip are extremely unhappy, I'm relying more on medication for migraines, and I'm barely sleeping.

By the time afternoon rolls around, I'm walking around the house like someone out of the Walking Dead,....can't even hold my own body upright.

But see, I know I have no alternative, I have no way around this, there is no compromise.

I am so tired, and my generally-managed pain is becoming less so. I'm hoping now that I've resumed PT that it will help, but I also know that side effects from even just the radiation alone can be fatigue.

I feel like I'm letting my family down.




M.

I'm sorry I don't remember this Merrida. But, if you receive Medicare and Extra Help (Medicaid) Transportation is a Mandatory Medicaid Benefit. You don't have to be carless to use it. And from everything you've said, you have no business doing that much driving Sweetie.

I'm wondering if I should mention it to my PMD?

For example on the weekends, my pain regimen works well. But when I have to drive a lot, it's not sufficient.

I keep a calendar with me (it goes back to June of last year when I had my last THR and the complications that arose,....I kept notes of everything).

I can drive back and forth to a doctor's appointment. It's all that waiting in those chairs for up to 2 hours that wreaks havoc on my back.

And now with this new information, in addition to my non-onco physician appointments, I will be traveling 5 days a week for radiation, and if this test comes back with a high score, I'm driving myself to chemo.

I think I'm mostly coping with it (maybe I'm suppressing some of it), but the sitting more so than the driving is wreaking havoc with my low back.

It's a double-scare. Try as I may to not worry about chemo (because the results are not in yet), the mention of it confounded me. She said they usually use a picc line or port. (I've had very bad experiences with these!)

I am up at 02:50 and I haven't slept in ages.

I do have Xanax and ambien, but I'm already taking the maximum of that, so I have to suck it up.

Can't sleep, can't concentrate, can't remember......

For something that is being taken care of managed aggressively, why do I feel like I've been run over by a truck?



M.

I am very fortunate in that my insurance will cover this test, --minus the deductible. Lest we forget, it is January, and our policy, while very good, comes with a large deductible.

I know I'm doing the right thing, because I'd rather find out now than down the road and have CA turn up in some mysterious, undisclosed location in the future.

I just feel blindsided because my radiation onco and surgeon felt so sure I wouldn't need it.

Granted it may have been out of turn for them to say such a thing, but they always followed through with how my medical oncologist would make those decisions....they were just opining.

After my surgeries, I did virtually nothing. I became (even more) reclusive, hurt to much to do much of anything, and stopped PT for a month.

I've now been back twice. And I'm realizing all the ground I lost. I'm back to where a simple car ride to and from the grocery's gets my back in a tizzy.

And more so now, with the medical doctors, sitting in those waiting rooms on those chairs.....for so long.....waiting.

I'm watching how I'm now cleaning my house as I usually do, I'm so sore....maybe this is just something that will wear off? As I get back into PT and all that? Like an aftermath?

I feel horrible for my Husband who has been nothing but kind, loving, and unbelievably supportive. I'm feeling like a slug.



M.

I wonder if there is some kind of transportable chair cushions you can takewith you to make it more ccomfortable... Maybe one that massages your back and legs. Would that help?

Opps, wrong thread. I'm sorry.

I know how much driving can cause flares...went on a 18 hour road trip a few months back. OWWWW! :(

The chairs are uncomfortable because the ones that are comfortable are expensive. I know that's cold, but it's true. Also, just like everything else that deals with pain, if you haven't felt it you have no idea what it's like. And in almost every case it is Not the dr that sees the chairs before they are bought. Even if it was, it wouldn't make any difference because they don't know what it's like to sit in them like the patients do.

If a dr has a wife who has been through this and she is the one that looks at the chairs before they are bought, there is a difference.

It's ok Merrida. Vent all you need or want to. You're going thru so much, that the addition of the painful chairs don't help any.

I hope your pain lessons for you, so you can feel a little better at least.

love and hugs
Loretta