It's been 2 weeks since my first infusion of CVD chemo. My blood test showed that my chemical markers have come down just a bit, so I think that's a good sign. In the week following the chemo, I definitely felt different. I was on 2 different steroids to fight the nausea, along with trading off two different oral meds every 3 hours. It certainly worked. Not once did I feel sick to my stomach. But I was very tired. Unfortunately, the steroids kept me from sleeping. Those first few nights I would get up a few times a night, come downstairs, read, do some scrapbooking at 3:00 a.m., go back to bed and start all over again. I had an overall feeling of uneasiness and being generally uncomfortable. But on the 5th day and my last dose of steroids, I started feeling normal. It wasn't what I expected, although I'm not sure what that was. I'm glad I wasn't barfing the whole time. Although I wasn't nauseated, I did not want anything to do with food for 3 or 4 days. The first time is supposed to be the worst, so I have high hopes for the next cycle.
In a few days Ken will take me into the surgery center and I will get my port inserted into my upper left chest. The whole thing will be under my skin with a long catheter attached to go through my veins. The great thing about this port is that they will be able to use it for everything: drawing blood, giving IV meds, and the infusions. No showers for a few days, but I've played that game before. They will just insert the needle through my skin into the port and I'll be good to go. I've been told I can get a topical numbing cream to put on where the incision is to numb it up, and after a few times, I won't even need that. They won't put me to sleep, but they will give me some heavy duty sedative that will make me forget all the pain they'll put me through by slicing me up to put the thing in. I've played that game before, too. Once with the feeding tube, of which I remember every nightmarish second, and then with the lung bronchoscopy or something with a camera down my throat. That one worked for me, as I have no recollection of it at all. Unfortunately, Ken remembers all of it, and he said it was the worst thing he's ever seen me go through. Let's pray I don't remember this one.
The second cycle of chemo will be the next two days, and they should be able to use the brand new port. I hope so. I have such tiny slippery veins, I don't want them to go searching again. I heard that if I was going to lose my hair, it would happen 10 to 14 days after the first cycle. I am at day 15 and a little extra hair has come out in my comb today, but nothing substantial. Maybe God has decided he'll give me a little break on this one and let me keep it. That would be nice.
We went to Bakersfield for Christmas for just a few days, even though my WBC and platelets were probably super low, so I was super susceptible to any germs or bacteria. So we just stayed at Mom's, and anyone who came in had to sanitize their hands, and if they sneezed or went somewhere or did anything, they would sanitize again. I think it worked out ok. We played "Catchphrase" and had so much fun. Came home today with almost no traffic. Now I have to gear up to get the Christmas tree down so the yard waste truck can take it on Tuesday.
Kassy is going to Mammoth for the week with friends, which is probably better. She doesn't really need to see me go through this crap. She had her tonsils out last week, so it was my turn to take care of the patient for a change. She did well, and is eating whatever she wants, except crunchy things. She still has pain in the mornings because she wakes up with a dry throat, but she seems to be healing right on schedule. It will be her first time in Mammoth. I've never been, so I'm jealous, but I'm really glad she gets the chance to go since we probably won't get to go to the snow this year.
Ken's parents are coming down to take care of Cody for 3 days while I go through my appointments and spend New Year's Eve with us. They are definitely life savers when it comes to keeping Cody busy. I'll be posting my Christmas pics on Facebook, if you want to see them. I've gotten several friend requests from people I don't know, so I don't normally accept those friend invites. But if someone sent a message with their friend invite telling me who they are, I would gladly accept. That's what I do when I find someone who also has pheos.
Thanks for reading and being interested in our life and fight for treatment. I pray for you who are dealing with the same demons.
God is love.
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