On the whole, I’ve had better weeks
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Kris, when T started walking the ONC told him to start with just down the drive way and back and every other day increase the walk a house remembering that he had to walk back. Just a suggestion as sometimes even further than 3 blocks can seem like a mile to them.
Thank you, Lisa and Darla.
We go up tomorrow for labs and fluids. Also going to discuss alternate methods for feeding such as through his port. He doesn’t want that so he is trying a little harder. I wish I could get him to walk even a 1/2 mile…right now I can’t get him out of his chair.
We will get to do something soon, I know.
I am so glad though Lisa that you are doing so well and feeling pretty good. That’s such a great thing.KrisV
First off, happy anniversary Lisa. So glad you two were able to get away to celebrate. Even with all the set backs. Sounds like all is well and I am sure the scans will go well too. Next, I totally agree that Kris & Mark deserve a little time off too when he is feeling up to it and they can manage it. I too am sorry to hear he is having a hard time of it. Hopefully things will slowly start to improve.
Love & Hugs,
DarlaAnd, PS, if anyone deserves a weekend away after the year you’ve had, it’s you. Maybe you can swing a fun day doing something you haven’t done before if a whole weekend isn’t feasible.
I’m so sorry Mark is still struggling. I think our journeys are so closely linked in terms of schedule. I still don’t have a lot of appetite and things still taste off, but that’s the worst of it. My husband is making me do the evening 1.5-2 mile dog walking loop with him. I can’t avoid it because “it’s too cold outside” anymore.
Hope Mark feels better soon!!!!!
Lisa –
Sounds so good. Glad to here you got away for awhile. And don’t feel bad about forgetting stuff. We went off one day and forgot all of Mark’s meds but thankfully the infusion center was able to give him some to keep him comfortable.
So glad you are doing well post radiation. Mark is struggling so much and not feeling very well. I was thinking of trying a long weekend for my birthday (first weekend in May) but I am glad I didn’t. He’s certainly not ready for that yet.KrisV
Well, scans set for May 9, which is also my parent’s 61st anniversary. Figure that’s a lucky day. They are set earlier than I expected. That won’t quite be a month post radiation, but the scheduler insisted my oncologist wanted it done before my office visit in 3 weeks.
Lisa….congratulations on your anniversary. So glad you are able to celebrate it in style. Seems that when we leave our homes for any amount of time, a checklist is in order. I can’t tell you how often my husband and I forget this or that or had to return home. Glad you conquered everything – what would life be minus all the excitement?
Awaiting test results as well as preparing for tests easily sets us in a spin. We call it scananxiety and truly it lives up to its name.Have fun, try to not think of anything but just that.
Hugs,
MarionOMG, Lisa, sound like you went through a revolving door. Glad you had a good weekend, Happy Anniversary and Happy done with RAD and by the way you do look good!
Quick update: had first post-radiation oncology visit yesterday. My doctor said he forgot I was only a week out from finishing radiation because I looked so good (okay, so maybe I used a smidge of blush and some mascara). But, I really think he was talking about my numbers.
We’re working on scheduling my post-radiation scans. He wants a minimum of a month from finishing radiation to let inflammation go down. True to my signature block, I’m an impatient patient – I think the waiting is torture.
My husband and I got away for a long weekend – both to celebrate finishing chemo/radiation and our 23rd anniversary. Thursday, before we left, I spiked a fever, which is usually a sign my biliary tubes are clogged and going to start leaking. They put me on 2 antibiotics and I held my breath and made it through the weekend (we debated not going and decided worst case scenario, I’d just have to get them replaced at an unfamiliar hospital, but, fortunately, that didn’t happen).
On the flight out of town, my husband asked me a question about flushing my tubes (I flush them with a saline solution 2x/day). Oh.My.God. I totally forgot the bag of saline flush syringes! And we were going to be gone 4 days. Not good.
We landed and got my iPad out and started calling pharmacies. Not something the chains carry. Fortunately, one pharmacist mentioned there was a Walgreen’s pharmacy within a cancer center hospital we were driving by. Called it – yes – they had them, but they are prescription only. Fortunately, they could call my pharmacy at home and get authorization to give me enough to get through the trip. Note to self: never leave home without them again! Although, my oncologist is hopeful that we’ve killed off this bad boy enough that I can get the tubes out. That would be so incredible – I don’t know how to get through a hot Dallas summer without getting in the pool!
Anyway, that’s the scoop from here. Next up is scanning – in a few weeks.
Duke and Lisa –
Yes you should get up and move around. Cancer has a tendency to make the blood clot differently, making you at higher risk for blood clots. I usually tell my patients, at least hourly when they are awake. At least stand up and march in place to get the blood moving. And then if you are traveling – especially by plane or car – to move around every couple of hours. In a car take break and get out and walk around, check out the sites, have a bite to eat. In a plane you can walk up and down the aisle. There are studies that show increased clots in people after flying or driving long distance even if perfectly healthy.I do it too….sit in one spot, especially at the computer for too long. Usually the cat reminds me that she needs attention by getting in front of the screen.
KrisV
No, I hadn’t, but I think it’s still smart to get up out of my desk chair and move around during the day. Thanks for the reminder to do that. I tend to sit in front of my computer for far too long.
One thing I heard from my onc today is that I could be prone to blood clots, so I should not sit for more than two hours at a time (couch, car, airplane). Has anyone else been told that?
Awwww, that’s too bad she’s not. My radiation oncologist was super huggable. And incredibly nice. And funny. I didn’t see him a lot, but I really liked him.
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