I mean I'm tired of going to the doctor every few days and having to be admitted into the hospital for blood transfusions, platelets, magnesium and potassium like twice a week, but I just keep thinking "I'm almost there," and I may actually beat AML.
Then a day like yesterday happens.
There were a few things that happened at this particular doctor appointment that got me down, but when I went, though I was super tired and exhausted, I was smiling and laughing and even made some new friends in the waiting room.
And, I thought, maybe this is what I should do? Work in oncology somehow after all of this is over and help boost people's spirits and make them feel like they aren't alone going through this. I mean I do know how they feel... I'm going through it too.
This sweet couple I met had found out about the wife's diagnosis in January. So they asked a few questions and I talked a bit on how things went with me (chemo, being pregnant while finding out, and transplant stuff). They were still learning, and I am too, but I was able to provide a little insight on what's to come for her.
So, I was feeling pretty good.
Then, my doctor comes in and asks me if I was told about the "lumbar puncture."
I told him "no," and he goes on to explain.
For those of you who may not know, a lumbar puncture or spinal tap is a minimally invasive procedure where they put a needle into the lower part of your back between two lumbar bones to draw cerebrospinal fluid (CSF). They will do this to make sure no leukemic cells are present and then they will run chemo through the spinal tap. It's a procedure that takes about 30 minutes and I believe he said it can be done in his office.
He basically said this is precautionary. We just need to do it to make sure nothing is hiding anywhere (particularly my spinal canal and brain) and to reduce the chances of the AML coming back.
I get that.
I do.
But when you're talking about running chemo through my spinal canal and I'm assuming that goes up to the fluid around the brain, that scares me.
My doctor acted like it was no big deal, which of course, is the way my husband took it. But now that's just one more thing I have to do and this is particularly scary. I don't want to even think about the things that could go wrong.
That's my brain we are talking about messing with. I know I don't have much up there, but it still is my brain.
I just wasn't ready for that news.
I don't know when that procedure will be done. I do know he said he would do it when my counts started to come back up.
Then when I was leaving their office, about to checkout, I just looked around at the people who are also sick with AML or ALL and I start to think not all of us are going to make it.
And everyday I go to the doctor, that waiting room is full of cancer patients and according to a nurse, his patient intake is only increasing. I mean it's good for him business-wise, but it saddens me that so many are effected by this disease.
Through all of this, I still can't believe this happening to me. It seems so unreal. But then there are days I don't know what the hell I did before being diagnosed. It's honestly taken over my life.
I'm actually in the hospital now getting blood, platelets, potassium, phosphorus and magnesium. I'm low on everything. It's almost 2 p.m. I'm sure I won't leave here til 8 or so.
I hate this too. Everything takes so much time.
I just want to be home with my kids.
I may be heading in for a transplant in two or three weeks so this crap takes away my time with them.
Of course, I do need a break from them from time to time since I keep them by myself everyday, but I miss them when I'm not around them. That's the curse of being a mom--you need a break, but when you take one, you miss and think about them the whole time.
Anyway back to yesterday. The spinal tap wasn't the only thing I was upset about. I'd talked to his assistant about the possibility having another baby the week prior. They said the probability of being sterile--especially after transplant--is 80-90%.
They let me know that freezing my eggs would take too much time to do, and we'd have to do it pre-transplant, and they don't recommend postponing my treatment any longer.
Then, they told me about a shot they can give me before my next round of chemo that can shut down my ovaries so that they aren't further damaged and then they should start operating again in 3-5 years, if I understood them correctly.
Klay and I really wanted to do the shot. He didn't want to have the option of another baby ripped off the table either. We figured at least with the shot we will have tried, and they told me it will up my chances to conceive to about 50%.
So I was pretty excited about that when I went to the doctor last Thursday.
Then, yesterday happened.
"How badly do you want to have another baby?" my doctor asked.
Uh oh. Doesn't sound like this is going in a good direction.
"Why?" I asked.
He asked because the type of chemo he planned to give me prior to the transplant is the one that does the most "damage" to your ovaries or has the highest percentage that I will be sterile following treatment. He said he could change my chemo to something less harsh, but he would rather use this "ovary killer" kind. (I'm not quoting him there, just telling you how I feel.)
My heart sank.
I know I have to do what is necessary to beat this, but cancer has taken so much away from me already, and now it wants to take my ovaries and eggs with it?
And I know I have two beautiful boys and I should be so thankful for that; other people out there have a lot less and aren't so fortunate. But I just hate that this cancer is determining my future and our future as a family.
It makes me feel guilty that I most likely won't be able to produce another baby for Klay and for the boys. It makes me feel worthless.
I mean how am I ever going to feel like a woman again? If I can't have babies, I have no hair and no eyelashes, plus I just had a baby and I can't exercise, so my body doesn't feel womanly at all. I feel stripped of my womanhood.
And I'm not ready to let go of the baby stage yet. Little Bex is doing so good, and all I want to do it snuggle with him and smell him.
Needless to say, I left the appointment feeling defeated and not wanting to talk.
Klay and I went to grab some dinner and sat down in our booth, and as soon as I started talking about everything, tears just poured of my eyes. I couldn't stop.
I feel like I have handle on it all and then something like this happens. Two things thrown at me at once and I feel like I'm knocked back down again. I mean physically I am beat down, but mentally too.
When I think of all of this, I just want to cry.
I'm scared of the lumbar puncture and chemo through the spine and its side effects. Primarily, they say the main one is headaches, like a 20 or 25% chance for headaches and a 20% for really bad headaches. Um. THAT will be me. I get headaches all the time, so I guarantee it will be bad.
I know Klay, you're reading this and thinking "Cass, why do you always think the worst?"
Babe, it's just in my DNA. I'm sorry, but that's where my mind goes.
But if I expect the worst and it ends up being a cake-walk then I'll be like "hey, that wasn't so bad after all."
And today, I just feel like I could sleep all day. I mean it makes sense because my body is low on everything. But I'm just run down, beat down and knocked down today and not just physically.
I know I'm doing a lot better than others with AML. I found a donor and I need to keep that in mind. But I can't help the hurt and fear I feel.
This isn't over yet.
I still have a long road ahead.
At least I have these three nerds stopping by to keep my spirits up! Officer Logan, Lauren and my hubs.
And these two cuties to go home to...
How can life be so good but suck so bad at the same time?
Confused, Happy, Sad, Scared and Grateful,
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