Are you worth $187,000.00?  Seems like a crazy way to put a price on life but that is what hospitals and policies do.  My treatment, immunotherapy, is costing $187,000.00.  It is actually worth more than what most hospitals put value on human life.  This newly cleared FDA treatment is expensive and it’s only the beginning.  I still have to get to remission for a stem cell transplant.  Who knows how much that is going to cost.  Yikes.   How much does human life cost?  What would you pay to stay alive?   I know I have never really talked about the cost or expense of this whole cancer thing before but it definitely begs the question.  What would you pay to stay alive?

I am back home again after the 12 day stay in the hospital.  The first few days of immunotherapy really took it’s tool with the cytokine release syndrome.  Extreme fevers with chills, like having 10 flues at one time.  It was brutal.  Home is better but it’s still exhausting.  Every task seems to take hours and I have to sit down in between due to fatigue.  The fanny pack they did give me is standard issue and ugly but hopefully it’s only temporary.  This blimp treatment really bites the big one but if it puts me into remission so we can get on with the transplant then so be it.

Side note at least I showered today.  With the borderline debilitating headaches it’s been exhausting just to do that even,  Simple tasks are very difficult these days.  I want to gain as much stamina as possible for the transplant but at this rate I am going to be in some rough shape.  I would like to get more strength back since it’s all gone but if this state continues, I don’t really see how it’s possible.

Sadly I have to report that on Thursday October 13, 2016, I relapsed.  My ALL was back.  I was admitted into the hospital the same day.  We did catch it a little earlier this go around but it is still serious.  I had two options of treatment going into this mess.  Blinatumomab or Car T Cell treatment, which is a clinical trial.  We are choosing the Blinatumomab.

https://en.wikipedia.org/wiki/Blinatumomab

Long story short I will have a fany pack of therapy which in doctor terms isn’t chemotherapy, it is more of an immunotherapy, for 28 day of continuous drip.  The first nine days of this treatment I will be in the hospital.  Some of the side effects are so severe that I may end up in a coma(worse case scenario) If the nine days go well I will then be released to finish at home.  After 28 days I will get a two week break.  During this two week break they will pull a bone marrow biopsy.  If that biopsy comes back clean I will then immediately be prepped and readied for a bone marrow transplant.  The transplant in this case is the end goal.  However if the blimp does not work we can always go to the Car T cell therapy.  But my hope is that this works.  After the first few days of crying and not handling my shit,  I think I have more of it together.  This sucks and after only two months off chemo to have this come back is like a punch to the dick, if I had a dick.

I will in return take up anyone who would like to offer to come and paint my toe nails up on that offer if anyone wants to offer that.  They would need to bring their own nail polish remover and nail polish.  Just saying, doesn’t mean you can’t have pretty toes.

So I have this weird pattern on my leg that looks like it’s following my veins and is red.  It doesn’t hurt or feel like anything.  I went to a dermatologist that specializes in cancer related issues.  My doctor is pretty sure it’s nothing to be worried about just monitor but it’s from slugging of the blood.  It’s typically related to clotting and other hematology issues.  Shocking I know.  Well she just wants to make sure that all avenues are explored and want to test for lupus, which is an auto immune disorder.  What lupus?  Fucking seriously.  Like the last three years of chemo couldn’t have taken care of that.   It’s not that she thinks it is causing it but just would rather be on the safe side.  I didn’t really panic and don’t think I have it but rather just hearing the words and wondering if this is something I will have to go through again brings up all the things that I have already gone through.  Even as I type this my hands are shaking and tears are welling in my eyes.  I am starting to sweat a little.  I think this is what PTSD is like.  Calm down I keep telling myself but I just can’t.  It’s like it’s never going to be over.  Will this arise every time something weird happens to my body?  This fear? Wondering?  What ifs?  Now I understand scanxiety.  I get it.  Physically I am done with the worst of the worst but my mental battle is just beginning.

Cancer is officially Fucked.  I took my last chemo pill last Friday, July 15, 2016.  I am finally done.  I still don’t feel completely out of the woods yet.  I am not sure when I will.  All I know is it feels amazing to be done.  It has been a three year journey of mostly downs and a few ups that has just been exhausting.  I am exhausted, tired and burnt out.  I have nothing left to fight with.  I really don’t even know where to go from here.  There are still a lot of doctor appointments to take place.  Follow up with my hematologist every month, dermatologist, neurologist that just happened and some other testing that will take place in October.  It’s just nice to hopefully soon feel must better without all these meds running through me.  I still have a few meds to take but nothing like what I used to.  I don’t think it’s really set in yet, well not fully.  I don’t feel excited or really anything.  I think I am just done feeling.  I am drained mentally and physically.   My body still hurts and I still can’t sleep.  So it may be a while before everything really sets in.  We will see…..

Death conversations?  Are these a real thing?  Is this what friends talk about?  I mean seriously?!

Therapy is a funny thing. How do you know if you are on the same page as your therapist? I didn’t go see her for a “pity party”. I went to her to find the tools needed for support. I don’t want to go there to feel sorry for myself. I don’t see the point in that. This isn’t what it about for me. I haven’t felt worry for myself this entire process, so why would I start now? I came here to prepare myself for the future. So I don’t loose it on someone. Tools. I know why I cope with certain topics the way I do. I mean not to harp on a dead subject but who, specifically people without cancer, talk to their friends in general about death? Are these real conversations that people have? Well regardless I am not having them nor am I going to have them with my friends. I feel as though i have the same chances of being hit by a car as getting cancer again. If it happens I will cross that bridge when I get there.

Such a strange feeling left inside of me after this, that I couldn’t let it go.  I am still thinking about it.

Although my journey has been a tad bit different.   The sentiment remains the same.  I will note that “working out” through treatment has helps significantly reduce, not eliminate a ton of the side affects from the drugs.  I just think she writes better than I do.

Dear Friends Cancer Doesn’t End When Treatment Does

As I am getting to my finish line of treatment what does the next phase have in store for me?  I am not sure but I can’t wait to get there.

So much to my surprise, the physical has been the easy part thus far.  As I get closer to the end.  Yes, finally seeing a finish line.  My mental state has definitely suffered.  I am finally realizing what I have gone through this past two and a half years.  To quote my favorite movie, “I climbed through a river of shit to come out clean on the other side.”  Fuck.  I cannot believe it’s been this long.  So I am proactively taking steps to better mental health.  Also so I don’t lose my shit and go postal on everyone.  (insert winky face) Ugh, who am I?

Hmm, some very important questions are coming up about life after treatment?  I mean besides what I am going to do with all my free time.  Serious life questions.  Quite frankly it’s exhausting.

I haven’t written in a long time.  I have been going through this rejection of cancer of sorts.  I don’t know but I think I am finally going through the stages of realizing I have cancer.

1. Denial/isolation
2. Anger
3. Bargaining
4. Depression
5. Acceptance

It’s funny going through treatment, it was just pure survival.  I never really addressed the emotional side of cancer.  I have been and still am currently in the denial portion of this program.  I am not denying the fact that I have cancer; I just don’t want to talk about it, be a part of it or associate with it at this time.  I haven’t quite figured out why yet.   I know at some point I will work through it.  I know I want to help people at some point.  I am just not there yet.  I think I am on the verge of anger, though.  I get mad at people for what they post in social media or even say in real life regarding cancer.  I know most are meaning the best but it is fucking irritating.  For example this is why I believe I am creeping now into the anger stage of the process-

St. Baldrick’s just happened.  For those of you who don’t know it is when people donate money in exchange fundraisers shave their heads for cancer awareness.  Great cause really.  But reality at the same time it’s fucking stupid.  No I am not against raising money for cancer, but the whole idea of shaving your head is dumb.  Then people are saying they are brave for shaving their heads.  Like fucking really?  BRAVE??!!?  FUCK off, that is so dumb.  How is that brave?  It’s just fucking hair that grows back.  That is not bravery.

Okay, now I will come down from my soap box.  That has been eating me up inside for a while now.  I just didn’t want to even talk about it.  I really think I am morning the loss of my former self and trying to deal with new world I am given.  I wasn’t even a great person before but just knowing that I am not that person anymore.   I am actually a lot nicer, shocking to understand.  I patient and understand of others.  There is a tolerance that wasn’t there previously.  These last statements are very contradictory of what I typically post but it’s true.  I mostly just vent here….

I choose not to share photo’s with the world regarding myself or anything to do with being sick.  It was a choice that was purposefully made.  In a world where “googling” someone is common practice, I don’t want people to only know me as someone with cancer.  Or as a cancer survivor.  Plus I am old and just recently found out how to use Instagram.  Yup, it’s okay, you can judge me for not being hip to what the young kids are up to these days.  I understand why people do, it’s to connect to other when in their own world they can no longer relate to their friends.  I go through the same thing.  I connected to Alan through his articles regard his own cancer story, he wrote a story about social media Cancer in Social Media .  It’s an interesting read.  But in all honesty I relate better to those that are in their 50’s-60’s, who have been through some sort of cancer or have seen close friends and family have it.  Strangely I am content with that.

Also, I have come to the realization that, although some people are very uncomfortable talking about cancer, it’s mostly me that is uncomfortable.  I remember when I first found out, I had my husband tell my dad because I couldn’t.  Because in my mind, even though I did nothing wrong, I had failed.  I couldn’t for the first month even say the word “cancer”  unless I was being sarcastic or joking about it.  I wasn’t and am still not comfortable with my cancer.  Maybe I never will be.  My “timeout” from the world came to an end when I went back to work.  Still going through chemo, my own co-workers didn’t know I was still taking.  The assumption was I was back and done.  It’s because I don’t look “sick”.  I don’t act sick.  I have only had to go home early once because I wasn’t feeling well.  Mostly I power through it.  It’s still painful physically.  I can’t remember the last time I actually felt my toes.  I think they are cold most of the time but couldn’t really say.  The pinky finger on my stroke hand still refuses to fully co-operate.  Fucker.  But I don’t talk about, especially at work, unless someone else brings it up.

Anyways.  I do have pics to document what happened.  I hate looking at them.  They remind me of a time I would rather forget.  A time that in time will be a distant memory.  Ohh “remember that one time when you got cancer….”