Expect the unexpected

So had first chemo this week of a new treatment. (Enhertu) Seems to be doing well, but it will probably take a few for my body to get accustomed to it, and to learn how to maximize its abilities. So far mostly very tired – which is actually kinda a good sign, since generally, that would mean it’s doing something.

I have to say, this one has an unexpected unpleasant unusual side effect. I’m usually very good about keeping my gut in – well lets just say I’m regular – very regular – almost like clock work. This medication, is mucking with this. For the first time in a very very long time, I’m horrible constipated. When I say horrible – I mean with a capital H. I’ve got this gut that doesn’t do well with gas or bloating – and it somewhat makes me feel like the movie aliens, where things are trying to break out of that area. I feel like since having had surgery a few years back on my gut, it made a minor thing alot worse. I don’t think it was intentional but somehow the surgery made a space that was already pretty constricted much more constricted so discomfort feels so much unpleasant. This medication or some combination of it is accentuating this problem in all the wrong ways. Unknown to me last night, when I tried to massage my gut, I inadvertently unset my back – which made for quite an unpleasant night. Working now to double down on finding foods and things to fix this problem – its a bit of a struggle because its something I have made certain to be good at for a few years – but new meds mean stronger solutions. Go Figure.

On the positive side. There have been a few times over the years, when I have done a treatment that I KNOW it was working. This isn’t to say that all of the treatments have been bad, just a few were significantly better than others. For example, the first radiation I had last year, while I lost the first day, the rest of that series, I could feel it was working. I could feel a tiny bit of pain in the places where the radiation was killing off cancer cells. Small things, but powerful and important. This treatment feels the same! Its super exciting and inspiring. I’m working on curing my cancer, I have prayer, hope and god on my side. Lots of people working and believing in me, and this new treatment just makes me hope even more.

There are so many good and inspiring things in life right now. P turns 50 this year, it’s an inspiring year of good and positive things. I’ve been going with P to his veterans teaching class. He has been doing these classes for a bit, and I’ve talked to him about them alot, as well as talking to the students after the classes have finished. Its basically a non-profit that helps veterans learn a new skill of quality assurance testing. P thrives in teaching these, and the students are always interesting and diverse. This class is no exception, and I’ve met some amazing people already in these few weeks.

One thing I’m dealing with – or working thru dealing with – is from my recent hospital stay. I’m struggling with a sincere fear of being alone. It took until a few years ago for me to develop an appreciation for being alone at all, for the majority of my life its never been something I particularly enjoyed. The recent hospital stay made me somehow – maybe it was the situation that sent me to the hospital – not sure – just know that I’m super nervous to be alone. This has created some amazing opportunities to do some really fun things with the people I love. Its not that I couldn’t have done these things before, just now I’m doing them out of an odd sense, but it doesn’t seem to be making them any less enjoyable.

I’ve always been alot of a do-er type of personality, and now is no exception – I enjoy the going and doing, and its somewhat – well it just feels good. Somehow I just wish it wasn’t motivated by a discomfort for being alone. I’m hopeful I’ll get out of this rut or feeling of discontent eventually. I had finally, over the past few years, gotten to the point where I greatly enjoyed my time alone, and enjoyed my own company. Its not that I don’t enjoy my own company now, just more that I’m nervous to not have others around me.

I think its partially because I made a mistake. Over the past few years I’ve worked very hard to protect my liver, and minimize the amount and quantity of medications I’ve taken. Erring often on the side of avoiding them. I feel like in this case, I erred too long and low. I feel that perhaps if I’d have taken enough medication I wouldn’t have landed in the hospital. Its kind of a case of learning your limits by failing, just in this case it was a dangerous and uncomfortable lesson. I guess the time of dabbling with this is over, time to just take what the doctor says, and hope they are doing more help than harm.

Speaking of doctors and medicines. The doctor at the hospital put me on these incredible harsh anti seizure meds, and sent me to find a new neurologist to prescribe the next dose – they gave me 30 day supply. The neurologist I contacted can’t see me until 12 days after I run out of meds. So this because an interesting challenge to ensure that I get more of these controlled substance meds that I apparently now must keep taking to avoid the potentials of a seizure from failing to take them, while somehow getting a non-neurologist to prescribe for me. Go figure, interesting doctor things. In conversations with friends and family, this is apparently NOT a new problem. One would think that a hospital would provide enough of a prescription to cover you until another doctor could take over care, since it somewhat seems like they are “doing harm” which is against the doctors hippocratic oath, to prescribe something that is really bad for you if you stop it, but failing to ensure you have enough of it to not have to stop it. I suppose this is like the fine line between love and hate – fine line between help and hurt.

Its similar to the fact that this hospital – non profit one – that is close to my house, that I just love. None of my doctors have privileges at this hospital – and this hospital will not use my port for blood and medicines. Port that was installed at a hospital surgery 2 years ago to allow for me to not need to get all bruised up whenever they must give me fluids or meds. Instead, this hospital accessed six of my veins and left me with horrible bruises up and down all of my arms – including the one with the lymph nodes removed that they are not supposed to even try and access. I guess I can just keep hoping that they will get better and smarter and get certified to be able to use the port, and somehow my doctors will get privileges to see their patients at this hospital. I like this place – https://healthcare.ascension.org/Locations/Texas/TXAUS/Round-Rock-Ascension-Seton-Williamson So probably it will be the one I’ll be back to if I need the hospital again, but it certainly would be nicer to know my doctors could see me there, without having to jump thru all sorts of hoops – its worth mentioning 2 of them did jump thru hoops even without privileges – this is why I love my doctors.

Going to wrap this up for now, with the hopes that I’ll have more things – exciting and promising things to talk about again soon. I’m being led to some things that are a little fuzzy right now, but I feel they will be very fun to share, soon.

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