Welcome! Read Me!

This blog is created to give you a central location to answer any questions you have about my current and upcoming treatments and reactions. It is also created to help me make Lemonade out of the Lemons I have been given, so I will keep this as positive as I can.







Monday, March 2, 2015

What's Going On?

It seems like I am getting asked this question more and more lately... and less and less I know what the answer is. I realise that I am most likely getting asked because it has been a really long time since I have updated this blog, but it is also because my answer can change by the day or even the hour. I never know if the answer I give will be true tomorrow. I guess that is part of why the updates have not been very regular. Whatever I post now may be wrong or different tomorrow. Well, I am going to take the risk, and see where it takes me.
I am not even going to attempt to fill in all the gaps from my last post, I will just update from where I started my radiation and Chemo most recently. Since obviously the other was just a step to get me there.
In mid-January, as I was finishing up my Physical Therapy for my Hip Replacement I had notified my Doc that I had a menacing bump that was on my head, it could have been nothing but after an MRI it was found that there was in fact a tumor there (in the bone above my eyebrow) as well as one on the back of my head and then a few small ones just up from my Spine inside my brain in the tissue. It was determined that the best treatment for this was to do whole head radiation. Now they did have some points of radiation that they were able to pinpoint, but they radiated the whole head in order to hopefully get anything that may have been too small to detect at the time of the scan.
In the following week I started on a new Chemo as well, My doc had noticed that my Liver had not fully responded to the prior treatment and researched to find one that would work directly on the Liver. It is Affinitor, and she also researched the cancer that was taken out of my hip to ensure that it hadn't mutated from being ER/PR+ from the original Tumor, And when it was found that it was not she put me on a new Hormone Blocker so that I am not feeding the tumors anywhere else since the Tamoxifen was no longer doing that job. So she added Aromasin. I was also taking a blood thinner through subcutaneous solution injection because of a blood clot found at the time of my Hip Replacement, but upon my request because of the bruising and painful lumps on my rump we changed to a pill form, Xarelto. When this switched I started having other hormonal changes which made me feel great, I felt "normal" because I was actually having hormones normally flowing through my system for a week. I was not acting Post-Menopausal... I was not Moody, I was not having hot flashes, I was like what you would expect a normal mom in her mid 30's should feel. I had a blast with my kids and I was able to do things that I hadn't felt like I was capable of for months, or even years... It made me nervous... So I went into the doc's office to report it. It was an interesting conversation to have to tell the nurse that I felt great and that there was obviously something wrong with that and it had to change. They agreed with me and gave me a couple more days to feel great, then they gave me an injection in my stomach to stop those hormones from coercing through my system, and almost instantly they were stopped and I was back to my Post-Menopausal self, it was good while it lasted. Not long after the switch of blood thinners I started dealing with swelling in just one foot, as I read up on possible symptoms of a blood clot in my leg I got worried and went up to Huntsman ER to get it checked out. After an Ultrasound of my veins in my leg it was confirmed that all of my veins are open and clear so, nothing to worry about there, I was given instructions on how to sleep, and how NOT to sleep in order to get rid of the swelling. It went down fairly quickly, but it comes back just as quickly still, I will wake up with nothing, but by the middle of the day (if I have been up and going in the morning) it is back to swollen.
At the time I was also noticing that the Steroid Dexamethasone was causing me to have Moon Face again, so I asked if I could go off of it so that I didn't have to deal with the swelling there like I had before. Well, like my legs, the moon face went down, but then I started getting a rash. This didn't worry me too much until it started feeling like it was effecting my throat, making it difficult to swallow. This is not something I wanted to deal with, so again I called the doc. She had me stop the Chemo as this is a reaction that is common to this new Chemo, and had me start taking some Benedryl to counter the allergic reaction. Once I was not having the reaction in my throat the doc oked me to go ahead and start again but keep taking the Benedryl. So, I did, after about a week once my throat cleared up. Well, unfortunately that didn't last long, only a few days. So, I was told to go back off of it again. This time they dropped my Chemo dose in half and also my Steroid dose to half as well, but keeping me on the Benedryl at full strength. I was given the OK to start this new dose of chemo as soon as my throat was no longer being effected once more, and that actually started happening this weekend, but just in case there was a reaction again, I waited until today to call the doc first to make sure they didn't want me to wait until the rash that in on my hands and arms to clear before I start again or anything else. They didn't. So, I will be starting on my NEW Chemo regimen today, hopefully we will have the right combo this time and I can be on the medicine that is supposed to be helping me for long enough that it can actually help me. As it is, it is just making it so I have no idea what is going on. Every day, and every hour is different. So, as I said at the beginning, What I tell you today, will probably be different than what I feel like tomorrow.
As for my radiation, it is similar to other treatments, except I  had a mask, so they didn't have to use any tattoos to line up with and they don't draw on me, only the mask. It made the treatment very quick. it was great. I tried to wear something Disney most times that I went in. The Radiation Tech's noticed and so we talked about Disney a lot, it was a good escape. In the last few treatments they actually played the Electric Light Parade Song it took 3 treatments to get to the end of the song since it went so quick to do the treatment. Disney's Electric Light Parade
Radiation in process, First angle

In Process, again. Through the back of the head.

They did this angle on each side. 
I didn't have any effects of the radiation treatments while I was getting them except losing my hair. It went away pretty quickly. There are mixed theories about the regrowth of my hair. All other radiation that I have had has shown that there has been no regrowth of hair in those places, but some say that it will come back on my head. I don't think I believe it at this point. I am OK with it not coming back at this point. It would be nice if it would just pick one and then I am good. I am totally fine with not having any hair, gives me one less thing to worry about, and I can just grab a wig if I want hair, or a scarf or hat if I want to cover my head or keep it warm, but I have gotten pretty used to just being bald out in public. The girls are OK with it as well, as long as they don't have to have the same hair cut. :)

Other things I am dealing with is dry flaking skin and the dry healing rash and aching joints that I am guessing is because of the crazy weather changes that we are enjoying. This means a lot of Cortisone-10, cream and spray, and Deep Blue, cream and oil. So, if you walk near me you may smell me before you see me... but at least it is feeling better. Especially if I can get my compression sleeve and socks on to help the swelling.

Well... This is "What's Going On" at the moment... Who knows what will be going on later today, or tomorrow, Or whenever I get asked again. I will try to update a little more often, this way I don't fall so far behind that no one really knows whats up. Time for lunch and Chemo! Wish me Luck.. And CHEERS!! Or as my Daughters say "Pip! Pip! Cherie OH!!" Clank!!