I’ve had 4 really pretty good days this week. Monday morning started off a little rough. I decided to wash my hair again. That wore me SLAP OUT!! This time I took off the dressings and just let the water run over the areas because they are so close to being healed. That did make it so much easier because I could use both hands. This shower head puts out a VERY strong stream. Ordinarily, that is a good thing, but I don’t like to let that strong stream hit my head surgical areas full blast yet. The biggest problem is that it gets so BLAZING hot in that bathroom with the door shut for any length of time – even with the vent fan on.
Let me digress a bit here. This house heating and cooling is just set up all wrong. If you get the ground floor so that you can survive without wearing a coat and hat all day, then the upstairs is BURNING HOT!! And the basement……well we won’t even talk about what a freezer unit that place is. So, after Monday, I got this long stick from the garage, and shut all the vents upstairs – in the ceiling. The rest of the week, we have been able to sleep sooooo much better. I’ve even starting dreaming again. I can actually wake up in the morning feeling like I want to go and do a little shopping. It is so much healthier to sleep in a cool room – your nose and throat don’t become parched and dried out, you can sleep under some covers – I can’t get to sleep unless I have something covering me.
So, over all, I’m sleeping much better. EXCEPT for this one HUGE thing – and I mean HUGE!!! HOT FLASHES!!!!!!!!!!!! I’ve been taking HRT (hormone replacement therapy) for about 5 years. It is bioidentical hormones that are applied topically. It took a while to find the right dosages for each of the three hormones I was taking, but we finally got the right combination. While trying to get that combination, I experienced some hot flashes, but NOTIHING like what is going on now. I had NO IDEA these things could be so VISCIOUS!!!! They are major life DISRUPTING!!! When I had my first major surgery on Oct. 25th, I discontinued the hormones. I was not sure how, or if, they were affecting my cancer, and I didn’t want to take a chance. I was surprised all this time that stopping them didn’t seem to have an adverse effect on me – hormone-wise. Then after this 1st chemo therapy a week ago, I don’t know if it was the chemo that killed the last tiny vestige of hormones coming from my ovaries, or whether I had just been off the HRT long enough that FULL-BLOWN MENOPAUSE has just hit me coincidentally. But, believe me, IT HAS HIT, and it is life-disrupting MISERABLE!!!! They occur all day long – sometimes twice an hour, sometimes every hour, sometimes every 2-3 hours. They occur all night every time I move or turn over. If I could lie in one spot all night long, it would be great, but that is just not possible. If it were not for this, the rest of my situation would be a breeze! This is certainly NOT what I needed at this time of my life!!!!!
Here’s a little incident that happened the other night. I was SO HOT, I went upstairs to change into a cooler shirt. As I took the sweater off my head, my glasses came off, and out popped the left lens, falling onto the floor. ARGH! Guy was hollering for me to come do something, and telling Mark I couldn’t seem to multitask anymore. ARGH! It’s a thousand wonders I didn’t step on the lens that I couldn’t see lying on the gray carpet! I got my cooler shirt on, and as I was leaving the room, I thought I saw something shiny catch my eye on the floor. Mark came up the stairs to get my glasses to fix them. The little screw had fallen out, too. He looked on the floor where I thought I might have seen something, but didn’t find the screw. He said to never mind because he had a little glasses tool kit and had plenty of screws. In no time at all he had it fixed, and I was back into the business of seeing. Thank the good Lord, he guided my steps so I didn’t step on the lens and crush it, and thank the Lord for my son having that tool kit!!
Now, back to washing my hair on Monday morning. This was before I closed all the vents. It got so hot in the shower, I was not sure but what I might faint. When I finally got out of the shower, I sat down and put my head down for a while to keep from fainting when one of the hot flashes hit me, while the bathroom felt like a sauna. I thought I might roll out on the floor! Then I had to get these dressing put back on. It really take two people to do this when I'm doing the dressing, but I couldn't get dressed until I got these back on. I got them, but it just added to my sweating. Then Guy came in and said he wanted to take a shower. NOOOOOO!! Not now! Wait until I can get out of here and get this place cooled off a little!!!! I ordinarily dry my hair immediately after washing it, but there was no way I could think about turning on that hair dryer!! I finally got up enough to open the door and fan it back and forth, back and forth. But the bedroom was too hot to cool me off much. Later, after I could get out of the bathroom, and the bedroom got opened up into the rest of the upstairs, we got it tolerable to dress. By that time, my hair had pretty much dried by itself, so I just used the straightening iron on it – between hot flashes!!
Later that day we went to Scheel’s (the big sporting goods store) for lunch – just to get out of the house after the big snow we had, but after lunch, I pretty much just sat and watched the ferris wheel while Guy looked around. I just didn’t have the energy to walk around.
Tuesday morning, I woke up feeling like a new person, after shutting all the vents Monday night. That was the night that I actually dreamed some – the first time in a long time. I felt so good, I wanted to go shopping. The boys got out of school at 10:15, so we picked them up, went by the bank, ate at this really good Mexican food place, and did some shopping. I wasn’t sure how Mexican food would set with me since I have been eating just pretty ordinarily home-cooked food. But it was delicious and I got along fine. We stopped at Walmart to pick up a few things. Yesterday, I heard on the news that later that day there was a shoot-out between police and a man in the parking lot. The police had to kill the man – there were no charges filed against the police because of self-defense. Whew! That Walmart is in a nice part of town in Olathe, too.
We finished our shopping at Academy Sports, and that is where I snagged these boots on a clearance rack for $19.99.
Genuine leather uppers and fully fur-lined! Most all my shoes are athletic shoes, and they make all of them with cloth sides and toes now. Those don’t get you through the winters here in Kansas. So, I thought these would be warm. I do have a pair of UGGS back in LR, but they are not all that comfortable – they offer NO support – just feel like big house shoes and are not weather proof like these boots are. It is funny – I got those UGGS years ago, and I think I’ve worn them once while living in Alabama. Anyway, I felt pretty good about that bargain, especially when Guy told me he had been looking at some like that online for $154, but he just couldn’t pull the trigger on them for that price. I looked on the bargain shelf for something for him, but no luck.
I’ve been having some trouble with my left hand that is wrapped like this in order to hold the dressing in place on my arm.
For a couple days, sharp pain would suddenly hit my thumb, or my palm, or the outer edge of my palm. It was just so annoying! It would happen just out of the blue. I do use the hand more and more now, so I don’t know why it was doing that. I got out my essential oils, and for a couple nights and mornings, I applied Young Living’s Valor. Vola! (SP) That did the trick. I just love that stuff – any ache, anywhere in the body – it works every time!! And it helps with sleeping, too!
I have felt better and better each day this week. As far as I can see, that 1st chemo treatment caused no side effects. I’ve had no nausea, no elimination changes – nothing really. That Dexamethasone that I have to take the day before and the day after chemo make me a little dizzy and spinning feeling, but just slightly. Today I looked up the side effects of that med, and dizzy, spinning feeling, mood changes (Guy said, “Oh, yes!”), and get this – INCREASED SWEATING!! Well, thank you very much – JUST WHAT I NEEDED!!!!
Today I went for my 2nd round of chemo. Before I took the treatment, I met with Dr. Powers. I had a whole list of questions to ask. He was very patient and answered them all. He looked at the spots on my head and felt like they had not progressed any. There are two spots around the flap that are definitely angiosarcomas, but he felt like they were holding in size. The other two suspicious spots have not changed to the black color, so they MAY just be spots related to the surgeries – perhaps where the little instruments were holding tissue. He said he thought the hot flashes were probably coincidental to all that was going on, and being off the hormones this long had just now caused the menopause to kick in. He said he could allow me to start using the hormones again, or we could just let nature take its course now and get through it. BUT, he could give me medication to help with this. I couldn’t see going back on those hormones again, and then at some time in the future have to go through this all over again – because you can’t take these for the rest of your life anyway. So, I said if there was medication that could help, I’ll take the medication. I can take it every 8 hours, but he suggested taking one at bedtime for a while, and if I needed more, I could go to them every 8 hours. I’m really anxious to start on that tonight and see if I get some relief. If I didn’t have to deal with those miserable times, I would be doing just fine! They simply wear me down after a while!!! While writing this, I’ve had to stop and fan at least 5 times!! ARGH!!! If I were home, I’d strip naked – but then I never get ANYthing done but dress and undress!
The chemo session went well today. Before I left the house this morning, I put the numbing cream on a square piece of Press N Seal and stuck it over my port area. Before the chemo, the nurse drew my lab work from the port. I was a little nervous for the first time, but that worked like a charm! I had to wait for the lab results before she started the chemo. She said the results were good. I had noted on my lab results that I get online, that I was slightly anemic from all the surgeries, but she said my hemoglobin was 11.4 so that was just fine (normal lower level is 12). It was 11.8 last week. I guess I need to concentrate on getting more protein in my diet. I haven’t been concentrating on that like I was after the surgeries. At one point after that 2nd surgery in the hospital, it went down to 6.8! That’s when they gave me two units of blood. So, after the lab work was OK, she began the premedication to the chemo. She cut the Benadryl in half this time, and it just made me sleepy – NO RESTLESS LEG SYMDROME like last week. Praise the Lord!!! The Benadryl is an antihistamine to prevent any allergic reaction to the chemo. She said they concentrate on this the 1st couple of times just to prevent any possible reactions. After the Benadryl, she gave Decadron – a steroid. Then she had to wait 30 minutes before giving the chemo. The actual chemo takes about an hour. The 1st 2 times she has started it rather slowly just to be sure I’m doing OK with it. Then she moves it up to the regular drip speed. This time I had my new headphones to listen to my phone. They worked great. I listened to my book for a while, but realized that I was dozing off to sleep and missing the story, so I switched to Peaceful Holiday music from Pandora. Wow! That was so pleasant and peaceful – mostly piano Christmas songs. Jeannine had suggested that, and I’m so glad – it was great!
As soon as I finished the chemo, we had to rush over to Dr. Mammen’s office to have the stitches out from my 3rd surgery – the ones on top of my head. Dr. Mammen thought those had healed quite nicely. He also looked at the angiosarcoma spots on my head and felt that they were drying somewhat. His exam was quite encouraging to us. He felt that we were definitely on the right track with this chemo. I’ll have another chest CT scan and see him in March just to be sure nothing is spreading after four months of chemo.
After we left his office, we were starving!! I did have an egg and toast with peanut butter for breakfast rather than my usual cereal to try to hold me over to a late lunch. We called Mark and asked if he would like to go get a steak with us. Sure, he was up for that! Since the boys are with their mother, we thought it would be nice to have a late lunch/early dinner with just the three of us. We splurged and went to J Alexanders. Yum! We were not disappointed! I had prime rib.
I was pretty amazed that, with all I had been through for the day, that I was not exhausted – and still no nausea! Herein in why I titled this blog “Feeling so blessed today.” Plus, I got home, and in the mailbox were more cards from family and dear friends. I tell you, I have been overwhelmed from all the card and notes from so many dear friends. And my sister – she has sent me a card for every single day I have been in Kansas City!!! And three days ago, the doorbell rang, and my SS class from Alabama sent me the most beautiful Christmas bouquet!! I’m just too blessed by everyone. So many send such encouraging messages online. So many online prayers! Sometimes I just have to pinch myself to see if it’s real. Even with these pesky hot flashes, I have been amazed at how I feel. I know as the chemo progresses on, this will decline, but right now, I’m just enjoying the energy and comfort that I’m experiencing right now. Yesterday, I developed a runny nose – I was so concerned that I was getting a cold, that might affect my ability to take the chemo today, but last night I took some Emerge-N-C and Zicam, and when I woke up this morning, I realized that it was pretty much gone. Praise the Lord for that, because the chemo attacks the immune system, and you have to be ever so careful to not get an infection. The Lord has just been so good to protect me during this time.
Oh, yes! While I was at Dr. Powers office, we discussed my going home and transferring the infusions to Hutchinson. The nurse said she was working on that. In order for that to happen, I would have to get established with a Hutch oncologist for day-to-day or week-week issues. I would still have Dr. Powers as my main oncologist (I don’t want to lose him!), and he would be conferring with the Hutch doctor to make sure all goes as planned. I told the nurse I had a nurse friend who had worked in the Hutch Clinic, and I would contact her to get her recommendation for an oncologist there. She said all she needed was a name and she would take care of the rest. During the chemo infusion, I texted my friend, and she called me back, giving me her recommendation. I told Stacy, the nurse here, and she went right to work on it. Just after I left the office, she called to tell me she had it all set up! I got the doctor I wanted! I take my last dose here on Dec. 29th. Then I have the next week off. Mark will be home from Canada on the 7th. We will go home right after that, and my appointment with Dr. Shannon Haenel in Hutch will be on the 12th right before my infusion there on the 12th. Stacy had already sent my file information to Dr. Haenel, so she will have it ahead of my appointment. I am REALLY going to miss this KU bunch here. I’ve never in all my years of nursing run into medical people so caring and compassionate, and so eager to meet all your needs and make you feel at ease. I sure hope my experience in Hutch goes as well. I’d love to take this bunch with me to Hutch. I believe that the whole philosophy of the KUMC is striving to be like this, because I have not had anyone in all my surgeries or treatments that has not gone out of their way to make me feel comfortable and all my needs met. Well, I take that back – there was one preop nurse that had a hard time starting my IV, and didn’t seem very nice. And there was that one food service guy that just plopped my tray on my table, and never opened one thing when I was “one armed” in the hospital. But I’ve forgotten those two, because all the other have far overshadowed them! Either they have really got it together here at KUMC or the Lord just gave me all the caring and compassionate ones that work here! I’ve notice particularly in the cancer centers I’ve been in, that people REALLY do go out of their way to be nice and make you feel welcomed. The last thing you need when you have cancer, and are all stressed out over living or dying, is someone that doesn’t give a rip about you! I still remember that first day I entered that cancer waiting room and was standing in line to check in. I wanted to turn and RUN out the door!! I kept saying to myself as I looked around at all the bald heads, and people pushing their pumps, “Oh, Lord! I don’t belong here! I don’t belong here!” But the lady that checked me in was SO friendly and kind to me, I just couldn’t believe it! And it’s been that way every time I have to go.
So, I guess, this far into my ordeal, I’m just thanking the Lord for taking care of me as He has – placing the people in my life that I so desperately needed at that time, and they were so NICE to me, giving me so many WONDERFUL, CARING friends and family all across this nation to pray for me and encourage me – sometime just out of the blue during the day – online, with calls, with cards, with some of the nicest gifts! Just today, I got two beautiful crocheted hats from Joie Sassnet, one of my dear quilting friends from Alabama. Thank you, Joie!!!! That was just SO thoughtful!! I’m just overwhelmed. I can never begin to repay all the love. Just know that I’m soooooo grateful for everything – big and small. I just love all of you. There will be soooo many stars in soooo many crowns one day!! God bless all of you!!!
As always…. I’m in His hands……