The 1st part of this week was nerve racking. I saw Dr. Page in McPherson on Tuesday. He agreed my head and face were “exploding.” He said he had turned in the orders to my insurance company 5 days ago, and he was just waiting to hear from them. He said he would administer the Gemzar on day one and then the Gemzar and Taxotere on day 8, and then I would be off a week. I don’t think he had read the specific notes from Dr. Powers in KUMC, because that is not the schedule Dr. Powers said would occur. I told Dr. Page that Dr. Powers said it would be given as both drugs being given the 1stday, then I would be off a week, then repeat until I had had 4 rounds of chemo. Then I’d see Dr. Powers again to see how things were going. Dr. Page said there were several ways of giving the meds, but his way was the typical way. But he would go back and check Dr. Powers notes more closely.
Wednesday, I called the office to check on the insurance approval, but must have called too late in the afternoon since no one answered. I left a message. Thursday, I called in the morning, and told Vickie, one of the nurses that I was really desperate to get started this Friday, because next week would be Thanksgiving, and all my family would be here. Plus they would be closed Thursday and Friday. And I knew I would have to premedicate the day before the chemo – which was Thursday! She said she understood, and there were several other patients who were waiting on insurance confirmation, so she was getting ready to call me insurance company right then. Needless to say the waiting was excruciating! I was down to one day! She told me if I was not able to pre-medicate, they would give me some extra steroid in my IV. FINALLY, shortly after lunch she called and said I was a GO for Friday. Whew! What a relief. However, she said the schedule was Dr. Pages schedule. Then we got to trying to figure out how it could be given two weeks in a row, when they were going to be closed two days the next week. I didn’t want to wait another 3 days to start and get off onto a Monday schedule rather than a Friday schedule. She said she would check something and call me back. When she called back, she said, “Well, we’ve upset the fruit basket! You’ll be getting both this Friday, be off the next week, and then both meds the next week.” Well, that didn’t upset MY fruit basket! That’s what I wanted in the 1stplace! They had finally checked Dr. Powers notes and decided to follow them. SO, I quickly took my 2 dexamethasone tablets so I could get 2 more in by bedtime.
Oh, boy! Did the hot flashes begin! What is weird is at night, if I don’t move for a while, and then I move any part of my body, I break out into a sweat – enough that I’ve had to get up and change my clothes (in the past times) I had kind of forgotten that part. Didn’t get much sleep that night (steroids and head itching!), but I thought I could catch up during the infusion Friday. I had to be at the hospital by 8 to get some baseline blood drawn. Then at 8:30, I went up the infusion center so Dawn, the main nurse, could do her teaching about the two chemo drugs while we waited for the lab work to come back. In about an hour the lab work came back. My WBC had come up considerably, so I was good to go. A fairly new nurse was there that Dawn was training. She had been a nurse for 20 years, but only been working there for 3 weeks, 2 days a week. I was a little nervous to have her access my port, but with my weight loss, it sticks right up there, and you can even see the triangle of 3 little dots that you have to hit the middle of. She did just fine. Dawn was right beside her the whole time as she administered the various IV, including the pre-med and the chemo. Dawn explained that when she started the Taxotere, they would run it in very slowly for this 1sttime, and be checking my VS every 15 mins. Well, there goes my napping! Oh, well….I really didn’t get that sleepy anyway, because I decided I would try what I had read about helping to prevent neuropathy during infusions that caused that. Some research had shown that if you keep your feet and hands cold during the infusion, it would reduce the chemo to that area, and thus reduce the neuropathy. I sure don’t need any more of that, so I thought I’d try it. I fixed two ice bags, and fastened them to the bottom of my feet with ACE wraps. Well, the nurse actually did it, because once my port was accessed, I couldn’t use that side very well. She finally got them in place, but as time went on, I knew I could not keep them on the whole time. As I recall, using ice packs, they are to be on for a while and then taken off, then put back on. So eventually I removed them. After that, I just place them on the foot part of the recliner. Then I could set my feet on and off of them. That was more tolerable.
I did just fine with the administration of the Taxotere. They kept asking me every little bit if I was OK. I couldn’t really tell any difference, and my VS were fine every time. My worse trouble was my restless leg syndrome that has been bothering me for about a month. It started right away while sitting in their recliner. It nearly drove me nuts!! I had made my essential oils recipe for this last week and had been using it at home at night. It really does work. I don’t usually use it during the day, because I can get up and walk it off if it gets bad. Plus, I don’t like getting that smell all over my pant legs and smelling like a walking advertisement for EOs. You can generally tell people who are really into using them, because you can smell them as soon as you get close to them. J Well, anyway, about halfway through my procedure, I stood up from my recliner and exercised that right leg a bit, but it didn’t help. Once they finished with the Taxotere and started the Gemzar, they didn’t have to take my VS anymore, so I unplugged my IV pump and rolled it down the hall to the restroom. That was enough walking to relieve the RLS. Next time I think I’ll rub my legs with the EOs before I go, and not worry about the smell. It is coconut oil with lavender, Peace and Calming (or Plant Therapy’s equivalent – easier to get and much less expensive), and cedar wood. It doesn’t smell bad – just smells.
While I was getting my infusion, Guy had a lot of time to kill – 8-1:30. He picked up my meds from Walgreen – two pills for nausea, and more dexamethasone. He also picked up a turkey and a few needed things for Thanksgiving. When I got ready to take my evening dose of dexamethasone, I noticed that the directions said to take one 4 mg tablet twice a day (the day before the treatment, the day of the treatment and the day after). I had always taken 2 with all my other IV treatments. Dr. Page had written it for one. What I had been taking was left over from the previous IV infusions, and that prescription had come from Dr. Powers. Well, here it was after hours, and no chance to call until Monday. So, I decided to go with my usual two. I didn’t sleep any last night! Thankfully the RLS didn’t kick in, so I stayed in bed and just (at least) rested all night. Since I was awake, I decided to get up and go to coffee with Guy. I’d always wanted to see what it was like at that hour (6 am) at the grocery store with all his buddies. And sometime women did show up. Then Guy suggested that we go to Scrambled Sam’s in Lyons. It is absolutely the BEST place to get breakfast for mile around! And we had not been there for a long time. So that’s what we did.
When we got home, I was able to get a nap for about an hour and a half. Then my alarm went off at 9 to take my next dose of dexamethasone. UGH! Sleep over for now! I remember now that I don’t sleep much for 3 days and 3 nights when taking these steroids. During the day, you’re tempted to get lots of things done because you are “up.” But I’ve learned from the last time that I have to pace myself so I don’t use up all my energy and then “crash” the 4thor 5thday. I do have a good bit of stuff to do to get ready for the kids coming. Doing all the bedding laundry. Guy will help me get the beds made, since that wears me out even when I’m feeling good.
I think tonight I might take just oneof the dexamethasones. Perhaps I can get a little sleep. I’ll tell you some of the side benefitsof this steroid. The 1stday, the swelling went down in my eyes. What a blessing that was! Worth the price of the ticket! It also helped the pain in my knee and the pain in my side/rib. The energy you get can be a blessing or a curse – depending on how you manage that.
So far, I have not felt the flu side effects they talked about. I did feel a little queasy about lunch time today, but I think it might be more the breakfast I ate. I’m not used to eating that much. I took one of my nausea pills, and that helped. Today, I’m a bit dizzy at times – nearly fell off the piano bench while practicing for an offertory tomorrow. JSo. I decided to eat a little potato soup, and sit and rest and talk to you. AND watch Alabama football. It started at 11 and we forget until 12 so we missed the 1sthalf. That was apparently a good thing because we play ed the Citadel, and at half time it was 10-10! How scary that would have been to watch – would have been too hard on my nerves and energy. Thankfully, they came out looking like ALABAMA during the 2ndhalf and whooped them!
I think we have our Eagle Street house sold. We showed it last week, and the guy came by a couple nights ago, and we signed the preliminary papers from his lending institution. If all goes well we will close on Dec. 15th. It’s kind of bitter/sweet for us. We worked so hard to have it all fixed up (and spent money!). It is such a so cute and cozy little house. The buyers seems like a nice young couple with a baby. This will allow us to clean up a number of loans we have at the bank and give us considerable breathing room – especially after the fire this past spring.
Well, I’m hopeful that this chemo treatment is going to work, and I’m praying the side effects are minimal or tolerable. After this next lab work, I’ll most like have to begin the Neulasta shots to stimulate neutrophils produced by the bone morrow. This causes bone pain, and I remember from the last go round of IV therapy (that put me in the hospital), I had to take a shot of that before we discontinued that chemo, and I remember thinking, “I don’t ever want to have to take that med again!” Well, here we are – I guess I’ll be taking them, because both of the chemo meds drop your blood counts. She said I’ll just have to take pain meds to get through it. Last time, I used a heating pad, and that helped some. I just . have. to . get. though. this! I can do this – if these meds are working.
Praises this week:
My insurance approved my meds
My schedule for them worked out just right
So far, so good with the infusion – no allergic reactions during the infusion.
No major side effects yet – still on the steroids for that.
My kids and grandkids are coming next week.
Prayer list for this week:
Pray these chemo meds WORK
Pray for the incessant ITCHING on my head lesions to go away!
Pray the side effects are minimal
Pray this bought with restless leg syndrome goes away – FAR away!
Pray I don’t gain back a bunch of weight with these steroids. I like right where I am right now (40 lbs less from my highest after the last go round of steroids.
I hope y’all have a very Blessed Thankgiving! We all have so much to be thankful for. Thank you, Jesus, for all your blessings.
And as always…….I’m in His hands….