I really suck lately at keeping this thing current. In my defense, I lost all of my login info and it has taken me over a month, and several calls to tech support to finally get it all sorted out. It also doesn't help that I have a dinosaur of a computer that is missing several letters, and it takes several minutes to load each page.
I have been hospitalized twice since my last update. Both times were for blood sepsis from my PICC line.
The first time was during the mountain trip I spoke of in my last post. We got to our cabin, and I had just enough time to take in the beautiful mountain view and eat some dinner before something didn't feel right.
I woke up in the early hours of the morning feeling like I had the worst hangover of my life, despite not having a drop of alcohol. Pounding headache, extreme thirst, dripping sweat, incredible fatigue,etc.
Despite being so ill, I took my meds and pushed through, determined to do some things that my little boy would remember fondly. I made it two days before it was obvious that the infection was becoming life-threatening. I know this may sound stupid to most who are reading this, but if you have dealt with chronic illness, you know how it tries to suck away every bit of joy from your life. It ruins plans. It will take everything from you if you let it. You have to just learn how to deal with feeling terrible all the time and do your best to function normally despite it. I have become very familiar with the cut off point. I know when to say when and when to keep pushing and by day two, my white flag of surrender was up. I knew it was time to pack up and go home. Not a moment too soon either, I blacked out for a few seconds when I slid into the passenger seat of the car. John called my oncologist and they told us to go straight to the ER. So that is what we did. At this point my temp was 103 and I was out of it. They admitted me shortly after. That was a really hard stay. It was 6 days long, and miserable. They finally released me without giving me my last dose of IV antibiotics because they literally could not keep an IV in my body. I had 6 IVs, almost one per day. 3 of them infiltrated my arm, and my forearms swelled up to twice their size and turned purple and blue. After the 3rd one blew, enough was enough and they let me go home. Here's what a fresh infiltration looks like:
After that stay, I got a new PICC line put in, easy breezy. Getting a PICC is nothing like getting a port put in. It is so much easier getting a PICC. But alas, that PICC became infected after one cycle of chemo. It happened about the same as the last time, woke up early feeling hungover despite not having a drop of alcohol. At first I thought it was just from the chemo. it was two days after my infusion, and that is usually when I feel the worst, but I slowly started to realize it was more than that when I wasn't able to pull myself out of bed. I sent John a text asking him to come in the bedroom. He was off of work that day. We had plans to do a couple of fun things outside. Nope, not today. I asked him to get the thermometer. "Seriously?" he asked. I must have looked pretty bad because he went right away, no more questions. He took my temp and after the little timer started beeping, he held it up to the window to see what it was. "Oh shit." was all that I needed to hear before I burst into tears. 103 again. John went to call the doctor and I laid there with countless thoughts racing through my mind. Is this it? What if I don't make it through this one? That's how lots of cancer patients die, from infection. I have had several friends pass this way. I knew I should have started writing Sevin those letters, should have finished my will. I am terrified every time I am admitted into the hospital that I may never come back out. So I let myself cry in bed a bit. Asked my angels and my Grandma to come in, to surround me with protection. They always do.
John packed everything up while I tried my best to get ready to go. Two hours later we were on our way to the ER. I could barely walk to the car. So I shuffled down our sidewalk arm in arm with my man, always there, always being my rock. Literally keeping me standing. The sun felt good on my back. What a beautiful day it was. I got to the passenger side door and broke down into tears again. John came over and held me. "What if this is the last time I see our house? Our yard?" I asked. "You can't think that way baby. You will be back home before you know it" John said. There were tears in his eyes and then he was full on crying, so I knew he was just as terrified as I was that I wouldn't be coming home.
I was admitted that day. That stay was not quite as bad as the previous one, mainly because I am learning not to let people push me around. I will not do something just because someone is coming in my room telling me I have to. A lot of things that make me uncomfortable are not always necessary, such as constant infusion of fluids when I am drinking plenty and not on any meds that require it, Being constantly disturbed during the night, blood draws from the lab when I have already been stuck 6 times that day, etc. I have learned that it is ok to refuse things that are ridiculous. Because hospitals will do things that make absolutely no sense quite often. Don't get me wrong, I am grateful for them, they have kept me alive many times, but gone is the girl that will endure multiple needle sticks from 3 different people in the middle of the night for a blood draw that can wait. If you stick me you WILL take the 3 extra minutes to let me put a warm towel on my arm so that you can possibly hit the vein the first time, you WILL use paper tape instead of the plastic garbage that rips my skin off and causes me lots of pain, and you WILL respect that I am a human being just like you, or I will refuse to be treated by you because that is my right. It is my right to be treated like a human being. It took me a while to get that.
Anyway, I had to stay for 6 days. It was not fun, but I lived to tell the tale, and I got to see my house again. :)
I am home now, and I have to wait 2 weeks before getting a 5th line put in. This time we are going back to the port. I asked about the possibility of a pediatric port being put in because I am so small and the regular sized ports are so uncomfortable. They were unable to do that, but there is something called a Slim port, so I guess that is what I will be getting. I will resume chemo that same day I believe. This will be month 8 of chemo. I am not sure where my numbers are at as far as my blood work is concerned, because of the infections and everything. I am trying my best not to worry about that part.
I would be lying if I said I felt optimistic right now. It just keeps dragging on and on. I have moments of good and moments of intense sadness. The loneliness is so hard to deal with at times. After a while, the newness wears off and people get tired of hearing about it. Life moves on. People move on. I don't have many friends or family willing to just be with me. That is the hardest part of this. The isolation. No one wants to hear about it really. If you write anything other than a life is great post on social media it is usually ignored. People don't want strangers to know that their life isn't perfect, so they paint a pretty picture, snapshots of the shiniest parts of life. If someone posts anything besides that they are "looking for attention" or "whiny."
I work on it every day. Forgiveness, self love, accepting this life.
I joined Gilda's club, a place for people with cancer, and I signed up for the young adult support group, but I have been hospitalized every time they meet. I have joined several online support groups, but I never meet anyone that I connect with.
Sometimes I get really mad at God, spirit, the universe. For sending me such a shitty situation and forcing me to go through it mostly on my own. I don't get that. I don't get why this is happening. But why does anything happen? Why do children starve? Why are factory farms allowed to exist? There must be some reason for suffering right? The spiritual people tell you that intense suffering can eventually bring you great peace that never leaves you. So far that has not been my experience. Maybe one day it will be.
I am however learning to embrace the bad with the good. So often we are taught to ignore the "bad" and focus only on the good. This is starting to not make much sense to me. If you are not willing to face the "bad" and you push it away or run from it, or try to replace it with a "good" thought you create a huge imbalance. The same goes if you always focus only on whats wrong. Imbalance. We live in a world of duality. Yin and yang. They both have their place. The only way out is through.