However, people are curious and I think asking questions helps our friends and loved ones understand more about what we are going for or feeling so I have been fairly open about what I am experiencing thus far and want people to know they can ask me questions that they are curious about, it is okay!! I will say that many things I am going through I like to make jokes with or humor because that is me and I am fine with my friends sending me pictures of crazy eyebrows and comments. Some might cringe but humor is the best medicine and I am determined to have fun every day that I can.
So perhaps you are curious about some things to do with my cancer or treatment, feel free to ask away but as I blog I will post things that come up that people have been curious about.
So here is the big one - hair! Yes you lose it everywhere with the chemo regiment I have. Not all at the same time and some areas take longer to loose than others but it happens. I am on day 19/20 now and my head is a patchy bald mess it was very hard to look at but I have adjusted to the shock of it. This week the little pieces left were falling out all over the place so I had my bff take a lint roller to my head. Yes you read that correctly you know the lint rollers you use on your clothes, well this felt so GOOD. When your hair starts to fall out the follicles start to hurt and itch and I was like a dog having their winter coat brushed away, it felt so good. So when you lose your hair some people do wigs and some insurance companies will pay for a wig - mine does however I just don't think a wig is quite me.. so I have opted for scarves and hats to cover my head. It would be nice if insurance companies would give a choice of a $ amount to use on a wig or hats. They don't give anything towards head coverings and I am finding out that not every hat is great for you. First head coverings fit differently and different materials breathe better than others on your head and most you have to order online so you can't really see if its a great look for you until after you order. Not to mention the cost per a head covering runs about $20-30 for decent ones that are made of a material that is comfortable for your head. Several people have mentioned about eye brows and some people lose them completely or part of them I haven't lost mine yet I keep checking them daily and I am waiting for the day I don't have to shave my legs because I mean if I have cancer at least I can have the perk of not having to shave my legs. Enough hair talk...
Costs.. this is something a few people have asked or commented on. This is something that varies depending on what type of insurance you have. The one thing I found out quickly is that my insurance is apparently a pain for requiring authorizations. The one thing I had a tough time with at first was the amount of medical EOBs in my mail each day and then bills. I actually threw them all in a pile for a few weeks fearful to look at them! Being on a high deductible plan I knew first I would incur my family deductible before anything was even paid out, that was $4,000. Then I knew I would incur expenses until I met my maximum family out of pocket for the year, $8,000!! With the cost of scans, tests, chemo, injections the claims added up very quickly, in less than 3 weeks I had already met the $12,000 of expenses I would have to pay for. I am not freaking out, yes, that's a huge chunk of change but it could be worse I could have no insurance. So I wont be getting a new vehicle this year - but that is okay with me. So now I have met these amounts my out of pocket costs should be fairly minimal. There are however those over the counter med expenses not covered by insurance, the cubby by my bed is filled with Tylenol, Claritin, Mylanta, Stool Softner, Biotin, Zantac, Probiotics, Vit D, Iron ... then there is the mouth washes and some glad saran wrap. So perhaps you are wondering why I would need all those items!! Lets just say you never know how you are going to feel from your chemo .. one day your body is constipated the next day its not, you get the drift. Then mouthwashes I am not talking about those $3 bottles of scope .. with chemo you can get mouth sores so you have to rinse your mouth out numerous times a day there is a recipe for a rinse and I am very frugal but decided I have enough to mess with and I splurged and purchased the recommended stuff. I have never paid over $10 for mouth washed before so I feel like this stuff is like gold. Then the saran wrap.. well when you go to get chemo or need your port accessed you place a numbing ointment on your port area so you need to cover that ointment so it doesn't soak in to your clothing. You simply rip a piece of saran wrap and cover the area... sure you get weird looks when you stop places prior with plastic crinkled on your chest area but it works to keep that mess in place since the ointment has to be placed on one hour prior. My port has also been something that has come up in many questions too.
I personally do not like having a port - I tried to negotiate with my oncologist and surgeon that I did not need this but they did not go for it. I need to brush up on my negotiating skills because they have been lacking lately. So the port is a gadget placed under my skin mine is under my skin on my upper left side of my chest. I was put asleep to have it placed in you get some adhesive like stitches after wards and it can be felt (feel free to ask to see where it is or to feel it if you want .. don't worry its high enough up that I wont be flashing you to show it off). When I go for treatment the nurse accesses it they have a magnet piece that lines up with it and that way the needle piece goes in the right area each time. Like I said previously you numb the area about one hour prior I can feel the pressure when they enter it but my blood is drawn from there and my chemo goes in through it and my iron fusions. The worst thing is the flushing of the port you can smell and taste the alcohol like stuff so it is best to be eating a piece of candy of chewing gum when they do this or else it makes you feel a bit yucky. Normally my nurse has me chat with her while she is doing all this so that I am not thinking about it too much. I find my port very uncomfortable especially at night and how I want to lay they say you get used to them but I don't care for this weird object hanging out under my skin but I do realize the importance of having this since all the treatments will reek havoc on your veins. (If you look at the pic below you can see the cover over my port area at the top of my chest). I have started to purchase cotton vshirts since they work best for easy port entrys.
I am trying to recall all the questions or things that friends have asked about thus far. I know the Claritin has been something people have asked on. I take Claritin the day before my chemo and for 7 days after. The day after my chemo I get a shot, this shot boosts production of WBC and you can get aches from it so apparently Claritin helps with that. I had 1-2 days last time around day 10 that my tail bone ached and I was sore when I bent but nothing too terrible. Another subject that comes up is food. YES, things do taste different, I currently hate diet soda, skinny popcorn, chocolate and the idea of anything sweet... I love watermelon, apples, tomatoes, cucumbers and crave turkey sandwiches with tomato on them. I also have one day cravings, my motto is if I crave it I am eating it! My appetite has been fairly good I have a few days I eat soup and crackers then a few days when I am starving (most likely due to the steroids you take on day 2 and 3 after chemo).
The fatigue is the toughest side effect for me as a person that rarely sits still for long laying in bed and sleeping a day away is tough for me. But, I am going with the flow and if my body needs to rest then I am giving it rest.
The best thing about my treatment is the time I get to spend with my bff and others during my treatment, we make the time FUN for not only us but the oncology nurses and I know that my weird and fun antics may actually be what someone at the infusion center needs to see one day. Right now I have always been the youngest patient there on any of my chemo, iron or injections and if I can laugh and have fun being young and with young kids despite my cancer than anyone can!! When me and my bff left last week I told the oncology nurses I would make sure she behaved the next time I returned.. they said please do not. So who knows what adventures we will get up to at my next appointment (I have several this week for iron fusions).
As I close this lengthy post .. I am left thinking about a lesson at church today where it started on songs that bring something to mind from our life. I am not much of a music person I have no musical talents and can never remember what artist sings what song (ok .. I do know my Adele). But, over the past few weeks I have really started listening to the words in songs more and I have 2 specific songs that the words have really spoke to me recently. The first was during my MRI I am terribly caustraphobic but I also hate to take anything to make me out of it and I was not sure how I would get through the MRI. With a lot of prayers, some hand holding from my bff and JOY FM on the radio I did it. About half way through the MRI they were ready to start the contrast and the tech told me I had to stay still for about 12 more minutes and I was doubting I could stay in that machine for even a minute longer and the song "BREATHE" by Jonny Diaz came on - it was perfect timing and I did that and was able to get through those 12 minutes. Check it out below with the words, I never paid attention to the words completely until that day!
Another song that has played just at the right time lately is "JUST BE HELD" by Casting Crowns. Again, another song I heard many times but never really listened to all the words until recently. I started to really think about the part that says your "Life is not falling apart it is falling in place." We just never know what tomorrow holds for us. On March 17th my life changed and I could do nothing about it, but I realized what I could do is to realize there is a purpose for my life and what is happening and I was not alone!! Check out the words and video below and really pay attention to the words. My life is not in my hands, it is in God's hands and knowing that is allowing me to be positive and have humor in this time in which I have the hardest obstacles to overcome.
Thanks for letting me share my thoughts and humor with you!
I love both of those songs and didn't really listen to Just be Held until I went to the concert. I've recommended them to a few people struggling. Thanks for sharing, Lisa.
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