**Warning. This post is long. **
I apologize for not posting sooner, but yesterday wound up being a very long day. It started at 4:55 a.m. when our kid walked into our room wide awake and rarin’ to go. Actually let me back up and say it started the day before when my husband threw out his back. He didn’t do anything special; he just picked up our son wrong and out it went. I am soooo thankful that he agreed to let me take care of him. He takes on so much responsibility all of the time. Yesterday was the first day I felt better from my tonsil surgery, and it couldn’t have come at a better time.
If you are not a cancer patient, you probably don’t understand the importance of caregivers. And my husband, as my caregiver, not only works full-time and takes over a lot of care of our child and our household that we used to share, but he now has the added burden of taking care of me on the days that I need it. (Yes I know he doesn’t consider me a burden, but all of it combined can add up to be a burden.) As such, we spend a lot of time talking about how important it is for him to take care of himself first, then me. It seems counter-intuitive, but it’s like when you’re on an airplane and they tell you to put the mask on yourself before your kid. (There are a few articles, here, here, and here if you’re interested.)
So I was delighted when he allowed me to handle everything last night, from playing with, bathing, and getting our kid to bed (which was a marathon event in and of itself!), but also in taking care of him. He took painkillers, made appointments with our chiropractor and family doctor, and then spent most of the night on either the couch or the floor, allowing me to bring him his ice pack or the heating pad, alternating. He took off work on Friday and saw both doctors, and will be seeing the chiropractor again today and probably Monday. (His name is Dr. H. for those of you keeping count of all of our doctors!)
So when I say that our son walked into our room at 4:55, it was all on me to get him back to bed. And seeing as how I had my first day of chemo , it was very unlikely that I was going to be able to go back to sleep. Not that I, as a mom, was going to be able to sleep with my kid up and walking around anyway. I put him back in bed four or five times before giving up and starting to get him ready for “school” around six. We ate breakfast and I took him to day care early so that I could be back in time for BB (best friend) to pick me up for chemo. My crazy amazing friend told me she was not going to let me go to chemo for the first time by myself, and boy was I glad she was there, because what was supposed to be a 90-minute infusion day turned into a 7.5 hour day.
Yes. You read that right. I don’t know if I have mentioned this or not, but for the past month or so nurses all over (in surgery, in the ER, at my CT scan) have been experiencing problems with my port. They can’t get blood from it or they can’t get anything through it and it is pretty painful when it doesn’t attach right. I told the nurse that as she was putting the IV in and I cried when she “missed”. See here’s the thing with these ports. They have three little “bumps”. A nurse a few days ago called them BBs – like from a BB gun – and I think that’s a pretty good description because they are metal. There is a special needle that attaches to the port; it is magnetic and attaches to those BBs. The BBs are in a triangle shape which makes it easy for the nurse to find the middle and attach the needle. In other words, you’re not really supposed to be able to “miss”. But when you do, it hurts. If you get it in correctly, it’s not too bad.
So anyway, when I cried yesterday, the nurse told me that it is not supposed to hurt like that. She told me that perhaps my port hadn’t settled and “set” yet. (She also told me that it had had enough time to, but it was possible.) Regardless, she made the decision to send me to have an x-ray to check the placement of the port. That may sound easy, but boy was it not. She had to type out the information for Dr. F., then I had to go see Dr. F. It was probably forty-five minutes before I saw her and we talked about how I was feeling with everything. She threw me up on the table so she could check my tonsils and she said they still looked pretty raw, but since I was feeling good we would let it be.
After that, she had to write a script for me to get an X-ray and I had to go check in at outpatient. BB and I sat there for twenty minutes or so, then I moved to another waiting room where we sat for another twenty minutes or so. Then I spent nearly an hour waiting by myself in yet another (“holding”) room waiting for X-rays. I found out later that a doctor had to be present for the X-rays. The tech sent some contrast through my port and took the pictures while the doctor stood there and reviewed them as they happened. Now, before all of this happened I laid on a metal table for quite some time and really hurt my back, which means I may have a chiropractic visit in my future this week! Good thing our chiro likes us! 🙂 BUT while I was laying there, I felt my port sort of shift. I don’t really know how to describe it, but it really hurt and then it didn’t. Anyway, the doctor said that everything looked good on the X-ray, so I headed back to the infusion center.
My original scheduled time was 8:30. The room was not very busy then. At twelve o’clock, when I returned, the room was packed out. BB went to go get us some lunch from Chick-Fil-A, and as we were finishing around one, I finally started my chemo. Well, technically I started steroid and anti-nausea med. Because the room was so packed out, my nurse was not able to get back to me when my steroid was done to immediately start my Gemzar and fluid. When she finally did, it was pretty quick, but my fluid still hadn’t run out, so they had to pump it up to finish. It was 3:10 when I was finally unhooked and ready to go. And this was supposed to be my short day!
Some notes from chemotherapy: I met two very nice couples on either side of me. One was a grandmother who had colon cancer I think. It was her second treatment and she said she had a really hard time in the week in between. Her husband was cracking me up. On the other side of me was another couple. The husband was receiving his treatment and he didn’t speak much. The wife talked to us a good bit said that this was her husband’s second treatment and that his first was very well-tolerated. (And because I am terrible with names, I don’t remember any of their names.) I also saw the most pitiful display of bubbles I have ever seen. Apparently when someone has their last treatment, the nurses blow bubbles – which is a pretty cool idea.
However, even with two nurses blowing, they were getting almost nothing! As a mama of a two-year old, I was offended! LOL. I mean, come on, after months of this crazy hard treatment all you get is some pitiful sad bubbles. So I will be hitting up Amazon to buy them something like this. (Yay for free two-day shipping!) My son has something similar but a lot smaller and he loves it! The one he has is a few years old, so I can’t find it any more, which means I need to look a little more to find something that does smaller bubbles. I mean, we don’t want to overwhelm the patient (and his/her neighbors). But I will never buy anything but Super Miracle Bubbles again. They are the best and I stand by that as a mama of a two-year-old who also used to work in child care. So when I go back next Friday, I plan to bring a bubble blower and some good bubbles with me.
Speaking of next Friday, it will be a very long day for me. My husband is probably going to take the day off to spend with me. I don’t want him to do that very often, but based on yesterday’s experience and all the things that have to happen on Friday, I decided I really want him there. The plan is to get to the hospital at eight to do my blood draw. Since it takes about forty minutes to process the blood and they won’t even mix up the chemo until they have checked my blood counts, we thought it would be best if I came early. My chemo appointment isn’t until 9:30, but I have an appointment with my OB at 8:10. So I’ll run in, quick blood draw, then head back to the OB. Dr. P. (oncologist in Houston) wanted me off the Premarin and on a non-hormonal medicine for my hot flashes. So Dr. A. (my OB) put me on Clonidine, which is actually a blood-pressure controlling medication. Friday will be the follow-up to see if my blood pressure is at an acceptable level so that I can stay on it.
I’m a little torn, because the hot flashes are definitely back – though not nearly to the extent they were before – but the happy side effect of lowering my blood pressure has been that my migraines have gone away. I have always had low blood pressure my entire life and the introduction of all these new medicines (or perhaps the removal of all those organs) made it raise pretty steadily. It was never enough that any of my doctors or nurses were concerned and I have had really hard time getting them to understand that that was what was causing my headaches. Dr. F. actually prescribed me Xanax because she thought that anxiety was causing them. Which is a legitimate thought when you are a cancer doctor. But Xanax does nothing to keep the migraines from coming. All I can do is wait until they are beyond unbearable and take a Xanax and a Loritab or two, then go straight to bed. This is not always an option with a two-year-old. The Clonidine, however, in lowering my blood pressure, has made the headaches go completely away. So I really hope Dr. A. will let me stay on it. I’m not sure if the return of the hot flashes will be permanent on this medication, or if I am experiencing them because I was unable to take any medication for several days with the tonsillectomy. Regardless, the hot flashes are nothing like I experienced completely off medication, so I will take any help over no help!
OH! And I guess y’all actually want to know how the chemo was tolerated hunh? Very well. Yesterday, for the most part, was supposed to be my easy day. Next Friday will be the doozy. I honestly felt a little bit sore in my legs (the flu-like symptoms that were expected), but I have not felt nauseous at all and my energy level is good. This Friday, I received one chemotherapy drug – Gemzar – and an anti-nausea and steroid. Next week, I will receive all of those, plus another drug that I will go into detail about later. It is the one that will likely kick my butt and we fully expect the week after it to be a rough one. But if this week continues to be like today, I can handle it! Off to the chiropractor now.