Round 18 was lots of fun with my Nana B! We were giggly girls having fun on SnapChat.
As you can see we had a lot of fun playing on Snap Chat. Afterward. we enjoyed our Wednesday lunch at Jersey Mike's! We truly make the best out of a day that could be filled with gloom. I go in with a smile, and she brings the laughter! I look forward to chemo days with Nana and Mom
For an off week this one has been quite a challenge. But, I still manage to find good in each day.
I had a very good Fourth of July with Mike, Karen, and cuz Misty. She and I got to meet EmiSunshine! I was really tired that night and snappy because I was hurting. Thankfully, that is all good now.
However, to backtrack... I learned I do not like to be away from Mom and Dad during chemo week. It's nothing against anyone else, I am just use to the way we do things and that is okay.
Now, why this week has been a challenge...
My hands have been numb and tingling since treatment. This is very frustrating. I can't stand to touch anything cold or wet. I have to put something over a cup and can't stand the feeling of a wash cloth which makes showering difficult. Writing, typing, everything I normally do is effected by this because I don't like the way things feel in my hands.
I have also been ill and irritable this week. This is expected with medications I am on, but I am going to work on it the best I can. Round 13
So far this round has gone well. I am hoping not have any bad side effects after this round because I have plans Saturday. I watched the ESPYS last night. There was a gentleman on there who has leukemia an has lived 2 years long than expected. He renewed my hope and made me want to fight harder. I find it amazing how people we do not know can help us. I hope that someone out there is helped through my story. I know I have probably touched many and just don't know it.
I had a visit from Aunt Sharon and Uncle Andy today. We went to and visited Mamaw and Papaw. It was good to see them!
My blog has become sort of a "Dear Diary" base and I do not like that. I know I use it to update everyone on how my cancer treatment is going and I am happy to do that for you. But, I need to change it up a bit I think, also. I need to be a bit more real with the world outside about what a day in my life is like. I need to share the ins and outs, the good and bad, I need to share it all. And you must know and understand that-everything is not sunshine and rainbows- ~sometimes is black clouds and rain.~
So, what is today? In my world it's sunshine and rainbows. I am content, my pain level is at a steady 1 (yay for this) I am sitting comfortably in my recliner with my favorite blanket, coloring books, a box of Crayons, and my tablet. This is typically how everyday is spent. Typically, especially during chemo week. It is getting that time of year where I need to stay inside and keep my immunity up as best I can for my off weeks. That means, staying inside in my recliner with a big t-shirt on and a diaper under my favorite blanket. [I told you I was going to be raw and open.]
A lot has changed over the last few months as far as the dynamics of my care, and though it has been an adjustment, I am okay with whatever helps and makes everyone of us comfortable as a whole.
How have the dynamics changed? The biggest change for me has been less physical activity. This is due in part to not being able to sit in my wheelchair for extended periods of time because of pain. This particular pain began after having a biopsy done on my lower left pelvis I believe. Since then, I have not been able to sit in my wheelchair for long periods of time unless I medicate before hand. If I do not do so then as soon as I sit down in the chair my pain level shoots up and it takes a while for it to come back down to a bearable level so I can sit in my chair. So, instead of sitting in my chair during the day; I opted for my Mom's recliner. This is the only other place I can sit comfortably besides my bed, and I don't need to stay there all day.
The bathroom has also become kind of nonexistent in my life these days; also due to the pain I mentioned above. It is very uncomfortable to sit on the toilet for any length of time to go. If I am having a good day and able to be up in my wheelchair for the biggest part of the day, I do try my best to use the potty; but more often than not, that just doesn't happen these days. How did we remedy this? You guessed it! Adult pull-ups & diapers. This is the part that took me some getting use to. I found it embarrassing for a while. Who wants to be in such a position at 32 if it can be helped? No one. But, that is the reality of life, sometimes these things cannot be helped and you just have to go with the flow and do what makes things easier and gives you, the patient, the most comfort. Right now, that is what gives me the most comfort because I am not in pain while trying to go, and I shouldn't have to be.
However, it can make for some long tiresome nights for both mom and I. I usually have to wake her up at least 2 times a night depending on how things have gone that day with my stomach. It tends to like to work at night, no matter what we do. But, I know she wouldn't trade this chapter in our lives, nor would I. We needed something to draw us close together, to help us find our comfortzone with each other.. Cancer brought us together, and I will be forever grateful.
I know some people cannot handle this type of thing and that is fine, but I do pray there is someone out there who can so I can have the love and companionship I deserve to have, just like everyone else.
Bed Time has changed too. Things have to be done a certain way or I am restless and do not sleep well. Truth be told, Mom has be a little spoiled and I am fine with that. She fixes my pillows a certain way each night depending on how I choose to sleep. Generally, I sleep on my left side with one pillow behind my back and the other tucked under my head where I can snuggle the corner along with holding my Pup. [ 32 and sleep with a BaB stuffed animal, win!] She still tucks the cover in around me too... and off to sleep I go and usually sleep all night.
So there you have it neatly laid out... my daily life and what it is like. Even some of what it consists of... and now you know that every day is not sunshine and rainbows. Some days are pain filled and not pleasant for anyone. Others, much like today.. are calm and relaxing...
Chemo #10 and 11
Round 10 was a bit rough. As I expected it to be. I had some tummy troubles and was completely exhausted from treatment. I slept the entire weekend away. It took a couple days after for me to start feeling good. Then the following Wednesday I ended up vomiting shortly after taking my AM meds. So I took it easy and laid around the majority of the day. Thankfully, by evening I was well again.
Thursday was an exciting day, it was my very first day of work at The Dog House. I really enjoyed it and had a lot fun. Definitely looking forward to next Thursday. The dogs are good anxiety therapy. I ma hoping to pick up one more day on my off weeks. I cannot go in during chemo week because my immunity could be low and I have the 5-FU pump on; which would get in the way a lot.
Round 11 has not been bad at all. (Thank you Jesus). Dr. Tran is still very pleased with how I am doing. Especially how well I am able to keep pain controlled with a few pain meds and heat. Mainly heat!! No tummy trouble so far. The steroids make me hungry though! So, I am off to get some food in my belly!
Where Do We Go From Here? I am hoping to have a better understanding of this very question. It is a difficult question to have in your mind. I see Dr. Tran Wednesday afternoon and am eager to speak to him about treatment options.
I will not give up this fight. I have too many people fighting for me that are doing so because they love and care about me! I realize I cannot write worth a flip at night. But one day, all this mumbo jumbo will make some kind of sense!
OK! Let's try last nights entry again with clearer thoughts and better handwriting!
Where do we go from here?
Since finding out surgery was not the best option for me, this question has been on my mind. I know we will continue chemo. What kind? Are there any clinical trials i can do. All of these questions will be answered when I see Dr. Tran Wednesday afternoon. My hope is he will have good things to say in light of not having surgery. I also hope that after talking with him the acceptance will come easier. For now, I am just ready to start treatment again.
Wednesday's appointment went well. Dr. Tran looked over my last scan again and said the liver tumor was so small, there would likely not be a need for any additional (targeted therapy).
According to the American Cancer Society, Targeted therapy is a newer type of cancer treatment that uses drugs or other substances to more precisely identify and attack cancer cells, usually while doing little damage to normal cells. Targeted therapy is a growing part of many cancer treatment regimens. I, of course, thought this news was awesome. I just keep seeing how amazing God is through all this. This week has been good. Nana sat with me at treatment. We enjoyed talking and coloring, and lunch from Jersey Mike's. It has been years since I have ate there - it is still as good as I remember it being back in my MTSU days! Thursday was also a good day. I did have some pain & discomfort, but it was tolerable. I had sweet company for the afternoon. Mrs. Carolyn Devaney stopped by. She is a very sweet lady. I look forward to visiting with her again soon. Since going back on a full-time medicine regimen I had to have the dosage lowered because I have been having a hard time staying awake during the day! Hopefully, this change helps! eta: So far it hasn't!! Today, Friday has been a really good day with mom. We went and had my pump disconnected, and I had to get more Magic Mouthwash, and I will definitely be using it when the inside of my mouth feels chapped. Afterward, I treated us to lunch! We have just had a lot of fun together this week, with the help of Snap Chat. :) Hoping for minimal side effects, although it's looking like some naps may be in there somewhere.
My off week has been pretty good. It's been rather quiet, and I have been somewhat fatigued. The main focus of this week has been keeping pain under control. Somedays that is easy, some it is not. I am still trying to figure out if this medicine regimen is really working or not. I am having a hard time telling...
Thursday, I was able to enjoy dinner with my cousin Michael and his family at Yamato. I love Japanese, and will eat it any chance I get. His little boy, Sawyer is growing and cute as ever! I told them I really appreciated them making time for me, and next time our dinner was my treat!
Friday, was just a quiet day at home. I spent a lot of time going through my social media, and then colored for quite some time. It was a bad day for pain.. hard to control. :/
I have to say, despite trying to control pain today has been a good day. Mom, Dad, and I enjoyed an early dinner at Huddle House. The best part of my meal was the Dr. Pepper float. I was going to come home and nap, but as you can see that has not happened yet, I decided to write!!
I am glad to say I have enjoyed being off treatment. I was able to thoroughly enjoy a family camping trip in the mountains. We had a lot of good fellowship. It was much needed for everyone. I honestly can't wait to do it again. We were able to spend time with some extended family on the trip as well. Dad's brother Mickey, Aunt Wilma and their grands went too. It was awesome to hang out with everyone. We of course did a little shopping while we were there. Then, on our last day; sis, Colton, and I stayed behind and we went to Gatlinburg and spent the day. We went through the Hollywood wax museum, a car museum, and ate lunch at Dick's Last Resort. It was all a lot of fun! Like I said, I can't wait to do it again. I love the mountains!
Even though I am off chemo in preparation for surgery I still have moments. I got upset and cried the other night. I had not done that in a long time. I just got overwhelmed thinking about all I have to deal with day in and day out. Medicines, counts, etc. But I have to remember God is in control, not me and there will be victory in this fight.
For the first time in a long time I had a moment. A moment of anger. A moment I didn't want to. I wished for a moment that I did not know about the cancer, but then what? I wouldn't know how to make the best of each day like I do now.
Still, I get annoyed at all the little things that have come with this journey. Blood pressure meds, anxiety meds, shots for blood clots... not how I thought life would be in my 30's, but it is not my plan; it's His. I have to keep trusting He has this. I know I will make it. It just gets hard when you let your mind get the best of you, and that happens sometimes because we are human.
I am glad that when the negative emotions and thoughts rage in my mind it is only for a moment, then I get over and and go back to my happy self. I had to go to the doctor today and have my incision site looked at, it's been bothering me. For now, we just keep an eye on it.
I know this will all be for His good, but sometimes you just get angry.
Round 8: Reaction
This round of chemo took an unexpected turn. I had a reaction to some of the chemo. I got very hot, my BP went up, and I felt like I could pass out at any moment. It was very scary!
The doctor quickly took me off the meds that caused the reaction and said he will change it. I was given a steroid and began to feel better shortly thereafter! In the meantime I have just enjoyed time off while waiting for the CT at the end of this week. I did experience a little nausea this cycle but it was tolerable.
I have noticed less anxiety this go round as well, even knowing I have a scan. I have kept as busy as I could and kept positive people and thoughts around! I am impressed daily with the way I feel and the mobility I have regained.
God is working in my life. I have no doubt. I know He has His hand on those scan results already and they are going to be just fine. IN JESUS NAME!!
This has just continued to be a great week. The sunshine has really improved my mood this week and I have enjoyed a lot this week. Tomorrow is Round 7. I am looking forward to having a couple friends visit and have lunch. And praying for no side effects!
Round #6 Great Week
This week was round 6, only two more to go before the next scan. My week started out with seeing Foreigner in concert at the Tivoli with Erin. We ha an awesome time. We even got moved to the front row so I could see the show, and I got the set list at the end of the show!!
I also received good news from Dr. Tran this week. My tumor markers are normal. This is an indication that the chemo is still working. I am so glad it has been a great week!