Well so much for giving you a daily log of what has happened! I am so far behind now there’s no way I could remember each day! But I will do my best to summarize the last month!
I need to catch you up by letting you know, that after much chagrin….. I pretty much lost the hair battle. I have been ‘manifesting’ that I would keep most of my hair, including my eyelashes and eyebrows. Well…. I have kept a lot of it. On Monday, July 30th I had my sister cut my hair about 2 inches. I was in need of a hair cut anyway and had been losing a little hair everyday for several days. On that day…. it was coming out in bigger chunks, but I remained hopeful that I wouldn’t lose it all. Unfortunately, during the week, it just kept falling out. It was kind of depressing! My tears just kept flowing that week. I remember losing a lot of it on that Thursday, August 2 and having a pretty good breakdown about it. I was NOT a happy camper! By Sunday evening, I had lost enough that my husband told me I had a pretty good ‘bald’ spot on the back of my head. I decided that was enough. I was tired of hair being everywhere and figured that I might as well give in.
On Monday morning, August 6th, I had my daughter ‘shave’ my head. We started by having her cut it to about an inch or so long. I wanted to see how bad it looked at the shorter length being that thin. I took a shower and still got a lot of hair out while showering. After the shower, we decided to go ahead and shave it off. However….. since I still have some hair left, I didn’t want to cut it to the skin, so I had her use the same end on the clippers as I use when I cut my husband’s hair. It leaves it about 3/8 inch long.
Luckily…. I have friends who have loaned me scarfs and hats and even wigs! It’s been a fun adventure to come up with a different look! Maybe I’ll post some pictures sometime. The good news is, I still have some of my hair, but the best news is that I still have my eyelashes and eyebrows! I’m so grateful for that! It makes makeup for my show much easier!
OK…. now for treatments….. Let’s just start by saying that my second treatment was scheduled for July 31st, which was the two week protocol that usually happens with Hodgkins treatment. I met with the doctor first, where he joked about the fact that he was glad I came back. He was a little worried about it since he knew I wasn’t exactly excited about doing treatment anyway.
After meeting with the doctor, I was taken back to the area where they give chemo treatments. The first thing they do is take your blood and check your blood count levels to see if you are going to be strong enough for another treatment. This was the first time they had accessed the port I’d had put in the week before. I must admit… it was much nicer than getting an IV! After several minutes, the nurse came back to give me my blood results. She was showing me the report and telling me my white blood count was way too low to give me a treatment that day. She was telling me I’d need to come back the following week when Dr. Litton came over and said that he had been studying what they were doing in England to be aggressive with treating Hodgkins and they were giving treatments every two weeks even if white blood counts were low. Well…. of course you trust your Doctor…. right? I could see that the nurse was a little skittish about it, but she proceeded anyway.
Well….. to make a long story short….. It was NOT a good idea! It completely wiped me out! By the weekend I did not feel well at all. I was told to call the doctor with symptoms but that they wouldn’t recommend giving me an antibiotic unless I had a fever of 100.4 or higher. However….. the nurse had also warned me that my blood counts were so low that I might not produce a fever, so I needed to be sensitive to how I was feeling. Well…. I was feeling it all…. very bad sore throat, ear ache, terrible aches and pains and very weak….. but no fever! I finally called the on call doctor on Sunday night. I told him of the concern that I may not actually produce a fever. He didn’t have access to my blood report, but took my word for it and said to go ahead and start on the antibiotic. Part of the routine is to give you a prescription for an antibiotic so if you need it, you have it because your ‘fever’ could happen on a weekend or in the middle of the night.
I took the antibiotic they had given me and within a couple of days didn’t like what I was feeling. Besides the fact that I was still feeling completely wiped out– (side note here…. I missed rehearsals all week long because of this!) — I was feeling some symptoms that I didn’t like, mostly stomach pains. I looked up the drug on the internet and noticed that was one of the side effects, as well as a few other things I was feeling that I don’t remember now. I finally put a call in to the Triage nurse on Tuesday afternoon. I was literally stuck in bed and very weak and didn’t like it. They are usually very good about getting back to you by the end of the day, but she never called me back that day. The next morning, I put a call in again. I got a call within about an hour and she apologized for not calling me back the day before. Something about having my phone number wrong. Anyway….. we talked and I told her that I had been having all these symptoms, including some chest pain (which I forgot to mention earlier). I wasn’t sure whether it was something not be concerned about or if it was just possibly gas related, cause sometimes that happens. She was a little concerned when I told her about that. I hadn’t really had any pains for a couple of days by then, but she was still concerned. She asked me to please go to the emergency room so they could check it all out. She felt that I should have the tests run to make sure it wasn’t a problem. She mentioned that some of the chemo drugs I was taking could possibly cause problems with my heart (nice, huh….) so she asked me to take a precaution to check it out. As I mentioned above, I hadn’t been to rehearsal but was hoping to go that night, partially because they were taking promo pictures and I wanted to be in them. So I took the stuff with me that I would need for pictures in the hopes that we would be out of the ER in time to go out for pictures. NOT! We went to the ER about 3 pm that afternoon and left the hospital at around 9 pm that night! Yeah….. long after noon!
They ran all the usual tests on me when you indicate chest pain. Everything checked out fine. No problem with my heart. In the meantime of running tests, they had hooked up an IV to me so they could get some fluids in me. The nurse tried to access my port, but with no success…. so I had to have an IV put in anyway!! I started feeling a lot better after a while and the nurse mentioned that it was probably the IV drip that was helping. I may have been a little dehydrated, plus my body was needing the fluids. I was amazed at how much better I felt! Finally at about 7 pm or so I asked the Doctor if I could have something to eat. I was craving a bowl of Cafe Rio soup again!! He said, no problem, so I sent my hubby to Cafe Rio to get us both some soup.
It tasted so good! I have to say though….. that’s the first time I’ve ever eaten a soup and not been able to finish it all! I only ate about half of it! But it gave me leftovers for the next day, and that half a bowl made me feel a lot better! Needless to say, I missed promo pictures, which still makes me kind of mad!
The ER finally sent us home around 9 pm with a new prescription for a different antibiotic. This one was much better for me!
The Triage nurse had asked me to a call her back the next day and let me know what had happened and how I was doing. After we talked, she thought it would be better for me to wait till the next day to come into the office and get more fluids so it would last me for the weekend. In the meantime, she suggested I drink some Gatoraide to keep my electrolyte levels up. That seemed to work OK for me that day, but by Friday, I was glad to go get more fluids! I’m still amazed at what a difference they made! And I was trying very hard to keep up my water drinking too, but they just really helped for some reason.
I told them at the office that day when I came in for fluids, that I was scheduled to come in again on Tuesday for another treatment, but there was NO WAY I was coming! I felt like the first two treatments were too close together and I wanted another week for my body to recoup before I came back. She went and discussed it with the doctor and he agreed and was fine with that. Besides…. since he told me that I could take time off of treatments for my show… this would make it fewer weeks in-between treatments by waiting a week now.
On Friday night, I had my husband drive me out to rehearsal. I only came to ‘observe’ and watch my counterpart since I was still too weak to do it myself. We were on the stage now and I needed to see how it was all working. We did the same thing the next morning for Saturdays rehearsal…. I just came and watched.
The following week was originally the week I was suppose to get another treatment, but because I insisted on that extra week…. I was able to start to feel a little better. Amazing how fatigued I still felt!
I am a Parade of Homes junkie… in case I haven’t told you that before! I LOVE to see all the local Parade of Homes. Not only for decorating ideas, but also for future ‘dream home’ ideas. I was so frustrated that we had had to miss the Northern Utah Parade of homes a few weeks earlier because it was at the same time my diagnosis and all the testing happened and we just didn’t get it in. First time I’ve ever missed that one! So…. this week was the second week of the Salt Lake Parade of homes and I was determined to get there! I usually like to see ALL the homes in the Parade…. even if they are smaller, etc. You never know what ideas you’ll get. This year, however, I realized that there was NO way I was going to make it through 30 homes! So I went through the magazine and picked out which ones I for sure wanted to see and then gave into the fact that I would just have to miss out on the rest this year! Because this is the Parade of Homes located the closest to us, I knew that I could take several days to see the homes. We just planned on looking at 4 or 5 a day. I figured that was about all I could muster the strength to see. I think we took 3 days this week and saw what we could. By the time I made it through 4 or 5 homes each day I was beat! But at least I got to see them! My husband is the most patient man around! He is so good to me! He knows how much I love the Parade and just puts up with it all cheerfully! He will for sure earn his reward in Heaven for being my husband!!
By Saturday…. I was feeling OK… but still tired. Saturday was tech day for our show which meant we had an all day rehearsal. I was not excited about that!! I was also suppose to go to a luncheon that afternoon for a planning meeting for my 40th High School reunion. It was at one of our classmates homes up in the Kamas area. They own a very large home up there and I was hoping to get to see it…. but since I’d missed rehearsal the whole week before from being sick…. I didn’t feel good about leaving tech rehearsal to go!
I did leave about 3 pm to go see my son’s show at another theater. He’s in 9 to 5 at Hale Theater. It was opening week and this was one of the shows he could get us comps to. After the show, I was hoping to stop by the wedding reception of a daughter of a good friend of ours before we headed to the Soccer Game that night. Our same high school friend had invited the reunion committee to the owners box to watch the game that evening. Seeing as how he IS the owner….. it was a fun thing to be invited to! We drove by the house for the reception and the line was already so long we opted to just head straight to the game since we knew they had made special arrangements for us to park and get in. I wasn’t sure I was going to last the whole night… but we did make it to the game and had a nice visit with friends! My husband enjoyed the soccer game, and I enjoyed visiting! I was indeed tired by the time we got back…. but it was a good day!
Made it to church the next day…. again only for Sacrament meeting…. but it was good to get there!