I guess its time to update but I don’t feel like it, I don’t feel like reporting or telling or sharing or doing any of those things. I feel like focusing all my energy on somehow escaping my body, crawling, kicking, punching running hurdling myself forward and out of what becomes less and less real every day. I am not anything that is happening to me, I am not this disease, I am not its side effects, I am not where it chooses to inhabit next, I’m not these things, nor do I no longer want to be associated with them. Why then do they wish to be associated with me?
On my particularly bratty days, the days where I have no business asking why this is happening, or why can’t it stop I am reminded of what a brave friend of mine once told her dad who was suffering this and she said “what makes you think you should go through life and be able to avoid all the suffering?” Things that make you go hmmmm and certainly shut me up in times of brattiness.
I had been feeling awful for about 2 weeks, horrible stomach pain, cramps, nausea, no appetite. I spent my days wrapped in a heating pad, 4 baths a day to stop the pain. I lived in pjs (like I don’t most days anyway), Adam left for work at 6 and returned home at 6 to me in the same pjs and same position. I wanted to believe it wasn’t lymphoma related so had several trips to emerg to rule out anything and everything possible. By Thursday I couldn’t move, crying, aching I picked up the phone and called PMH. They had me down the next day for a catscan and to deal with the pain. I saw Dr. Gangatharan and Dr. Crump both who were concerned and squeezed me in for a catscan, they were going to see me that afternoon to give me the results. Adam and I waited around, had my catscan at 1:30pm and went back to the hematology clinic to page the doctors as the clinic closes in the afternoon. The secretary looked up “Erin Leigh right?” Awesome, out of 3000 hematology patients I’m now a familiar face, groan. “I’ll page them.” I sat there beside Adam in the huge empty clinic, I don’t know what I expected really.
Out came Dr Crump papers in hand and he sat down and stared at me, oh fuck I thought. “Well the pain you are experiencing is lymphoma related it has spread to your liver and kidney.” I felt my lower lip start to quiver and I bit down hard, but then my eyes began to well up. I just stared. “Your liver is swollen and stretching causing the pain. Our goal is to get you on the trial asap and get you some pain relief right away.” He excused himself as he was on his way to a meeting and Dr. G was coming to take care of the pain and explain the rest. I looked at Adam and started to cry and swear and then I noticed he was more upset then I had ever seen him, he had to get up and walk away – this broke my heart more than any news about me ever could have. I watched that man’s heart break into a million pieces and I couldn’t fix it.
Dr. G came in and went over what he could, and put me on steroids, 5 a day for the next 5 days to help with the pain. I would be hearing from the trial people early in the week. We left numb to everything, wandered through the go station not giving a crap and wondering how on earth I was going to break this news to my Mom and everyone else for that matter. I didn’t even want to talk about it, what’s to tell, what is to even say? I was sad and that’s all there was to it.
The steroids kicked in immediately and I was able to shower, do laundry, walk the dog, drive my car, eat and feel like I was part of society again, for this I am so so so grateful. Too many days of pain and suffering really weigh on the mind and make life indescribably tough.
I spoke to the clinical trial people, they are making me re-do all of the tests I just did a month ago to be approved again. They have to be done within a “certain time frame of starting the trial” this naturally enraged me and I told them that perhaps they could pull their heads out of their asses, and see that I don’t need another eye exam or brain mri – nothing has changed I’m not 70! The other tests I know I have to have but these again? Gimme a break! There was silence on the other end of the phone and then she began to laugh and said I will see what I can do. Surrrrreeeeee they will. Jerks.
My steroids finished today so I am sure I’m in for a whirlwind of hurt in the next few days = coming off 25 steroids is very difficult mentally, emotionally , physically – Adam calls it my “roid rage” lol and in a sense it is. As much as they work the side effects of them aren’t good for me either so I can’t stay on them. Because I’m sure you all need a laugh at this point I will share with you my 2 largest pet peeves of the day….
I am obsessed with mandarin oranges the little ones that come in the packed fruit cups – just delicious but why on earth do the packs have to explode EVERYWHERE no matter how careful I am opening them? Dear Dole is there any particular reason you fill the fruit juice up WAY to high every single time?! I swore up a storm tonight as I bathed in the fruit juice again.
My second biggest pet peeve is the cashiers at the grocery store “Would you like a bag?” No I would like to somehow carry all fucking 12 items out in my bare hands, or better yet maybe I could just stretch m shirt out and carry them in there? What kind of dumbass question is this and why when you see that I’m not carrying your “recyclable bags” do you ask me if I need a bag….umm yes.
These last 2 rants will prove to you I’m just fine lol, crazy as ever, a little roid rage and that yes everyday things still find their way on to my list just as they do yours.
I will get through this the same way I have gotten through the rest. Faith never wears out 🙂