ONLY 5 TREATMENTS LEFT!!!
You can’t imagine how happy I am that I am almost done. That we are getting to the end of this part of my journey. The last couple weeks have been getting progressively worse in the sense of side effects.
Taste
Last time I had updated, I had mentioned my taste buds starting to change. I shared how water tasted very metallic. Well, over the last few weeks that has changed as well.
We attended a wedding a couple weeks ago at which point I noticed that my salty taste buds were going as well. Everything is now tasting super bland. I have tried putting a crazy amount of salt on my food but nope, can’t taste a thing. A few days after that, my sweet tooth also went. That was the last of my taste buds.
Nothing really tasted anymore at all and eating was truly a chore. I would only do it because I knew I had to, to keep my body functioning. Over the last couple of days I have noticed though, some of the taste buds are coming back. I cant really say how, or which ones, but the only way I can explain it, are all the many prayers being sent up for me.
I can now taste the underlying taste of things like chicken noodle and French onion soup. Overall eating is a little bit easier. However, with the prolonged decrease in taste and decrease in amount of eating comes a change in…
Weight
Every week when I go to see my oncologist and the rest of my team, I also have to weigh in. They want to make sure I am not losing too much weight per week. This past week, I was coming very close to being too much. They usually are trying to keep the weight loss to stay under 5 lbs per week. I have now lost a total of just over 10 lbs. This past week I couldn’t eat much at all. If I had one bowl of soup per day that was probably the most I ever had the last week.
Throat
ThroatOn my last update I believe I had mentioned I my throat started to get a little sore. Well, it got very sore to the point where swallowing was very painful. This again in turn makes eating not so pleasant. The doctors prescribed a mouthwash called ‘Dr. Akabutu’s Mouthwash’.
Dr. Akabutu is a pediatric oncologist at the Cross Cancer Institute and he made this concoction of different medications to make a mouthwash that is numbing. It is helping with the sore throat. I used it a lot the first week. Once I got it, my throat got so much better. I had almost no pain anymore when swallowing. That has returned the last couple of days, so I am using the mouthwash more frequently now. Especially before eating it is helpful.
Gagging and Nausea
Over the last couple weeks, I developed nausea very often and with that came gagging. Often times I go into coughing fits that then turned into gagging fits. Sometimes it even leads to emesis. Now I am down to about 1-2 emesis a day but sometimes way more gagging than that. It’s really weird. Sometimes it’s just brushing my teeth or rising my mouth that will cause me to go into the worst fits.
Often times tears are running down my face because it just doesn’t stop. Last weekend I had a not so great weekend and was taking Gravol just about every 4 hours to keep my nausea at bay. On Monday, I asked my radiation therapists if I could see one of the nurses so I could ask if I could get something stronger than Gravol. When I got into the room to see the nurse, I explained to her what was going on with me. She took notes so she could call my doctor. After she called he decided I needed to get hydration every day of the week and prescribed me Maxeran to deal with the nausea.
Interventions
I got some blood work done and then got an IV. Every day from Monday to Friday I went in, sat in the stretcher bay and got 1 Liter of fluid which took about 2 hours. Even with all of that I had a horrible day on Tuesday. I was gagging and throwing up way more than the past days. It was just getting worse and worse. I had no idea what was going on. I was thinking already I can’t do this anymore. If its really going to get worse than it, I can’t do it.
Until I realized I had forgotten to take my anti reflux medication for a couple of days which would definitely explain why my reflux was so terribly bad. After I took that the rest of the week was much better. On Wednesday my IV blew as the last 60mls were going in. We just decided to pull it and restart one the next day. The last couple of days I have been able to drink so much more. I am hoping I won’t have to do the same thing again next week. Even though I have a bed there I am usually so drained after the 2 hours that I have to sit there that I would rather drink more on my own and not have spend more time there.
Skin
I knew that my skin would eventually look like a sunburn but I was not quite prepared for the amount of redness I would have. My skin now looks like a crazy sunburn not like a tan anymore. I have many spots that are even peeling as well. Its becoming more and more tight. When I wake up in the morning I can definitely see that some of the skin looks dead and is peeling more and more.
A couple weeks ago, I got hydrocortisone prescribed for my skin which I have been putting on regularly twice a day. What I didn’t know was that I wasn’t supposed to put it on areas were my skin was broken. I now got something called Nu Gel from the nurses to put on the areas that are peeling. I also bought Glaxal Base lotion that I often put on throughout the day.
When I am sitting on the couch watching Tv I sometimes put it on every 15 minutes or so. Anytime I touch my neck, it feels like the lotion has tried up already. So, I put on more. The nurses also gave me all the stuff I would need to put saline soaks on my skin to ease the tension and make it a bit better. I’m supposed to keep it on for about 10-15 minutes. So far I have only done it once (just got all the stuff for it yesterday). It feels so nice when the cool cloths go on my skin. By the time I take it off the 4x4s feel warm too. I will post pictures on the bottom of this page of my neck. But please be warned they might not be the easiest to look at. I can’t wait to be done.
Hair
About 3 weeks ago I noticed I was pulling out strands of hair out from the bottom of my hairline. Anytime I wash my hair, I am pulling
it out in chucks. I was getting so frustrated with having these long hairs falling out, that I went and got a haircut with a design. I knew that up to the point where I cut it I would probably lose most of it anyways by the time we are done. That way I wouldn’t have to see it and put myself through the emotionality of that happening. By now most of the design is unrecognizable since so much hair has fallen out already. At least I don’t really notice it until I ask Jeff to take a picture of the back of my head.
Coming Week
At the Cross they have these bells at the radiation therapy stations that you ring when you are done. On Friday I will, finally, be able to ring that bell. I will be done.
I love the poem that they have posted by the bell. If I could ask all of you praying for me to think of me around 12-1230 every day. That is when I have my treatment every day. The last couple of days when I went into treatment I had major issues. Since I am wearing the shell around me, I can’t really swallow. With the thicker secretions I now have, it has become a big problem. I start to get really anxious and all I can do is pray. Pray that the treatment would be over faster. One day I even had to get them to take off the mask again and give me some water. That’s how terrible I felt.
Feeling His presence
One of these days I actually had a very cool experience. It was one of these days where I was super anxious and my prayer was just that God would be there next to me. The next thing I know, it felt like someone was holding my right hand and I was so calm.
Anyways my prayer request would be that you could pray for peace and calmness while I am having my treatments. Please pray that none of the side effects would act up too much while I am actually getting treatment.
I truly appreciate all the many prayers that everyone has sent up for Jeff and I. Jeff and my family often hear me say that the only reason I am still doing so well are all of the prayers. I only had side effects for short periods of time. When in all reality. I should have had them until months after the radiation is done. Yet, I only had them for a couple of days. The sore throat or as a couple weeks ago lost my voice. I went to ladies bible study and had no voice and it was incredible to watch my voice coming back as the hour progressed. Thank you again for all the prayers and all of the support. I am almost done with this part.
