Friday, November 27, 2009

Rage Against the Body

Just came back from a medical clinic and feeling distraught. Three weeks ago I had the fortune of being able to taper my cylosporin (anti-rejection drug) completely off. I was happy and cautiously celebratory about it. I was almost afraid to finally take a look at a life without cancer and without complications. Five days ago, though super vagina began to ache.

Not from a wild and passionate love encounter but for no reason at all. I became scared. I didn't rush to call the doctor because of what it all means. After a couple of days without it going away I called the doctor and had an appointment today. I sat and waited and waited while the time passed by my appointment and they kept filing the backlog of people in. I had a family emergency and just couldn't wait any longer even though the reason for my visit is potentially life threatening.

I left.

A couple of hours later I raced to a clinic which I avoid at all costs. I avoid them because they have no clue what my sentence (Freudian slip there but I'll leave it) is. I am like some sort of alien science experiment. They don't know what to make of me. Medical professionals don't know what to make of me.

They are great doctors but I'm too far out of their realm. I have to explain the bone marrow transplant and the basic mechanics of what that means. I have to tell them all the pieces that are relevant and let them fill in the gaps with the medical knowledge that they have.

I was kind of thrown off when the receptionist asked what the visit was for. I rambled a little trying to explain, starting with, "I'm complicated...". Once I rambled a bit she said, "How about I put 'vagina pain'?" Me, "Yes, that's the short answer, that's what I should have said..."

So I was sent in and waited impatiently for the doctor. When he came in he was an elderly gentleman and asked me what was up...I explained.

He said, "Say what?", I guess I won't be quoting exactly. I explained again slightly louder. He paused. Asked a couple more details and left the room so I could strip and get on the table.

He came back in and tried inserting the speculum. When he did, it felt like I was being stabbed from the inside. Despite my unusually high pain tolerance my hand pressed against the wall because there was nothing to grasp. He apologized in surprise that it hurt me so much and finished the inspection.

After I was able to get myself together, he told me it doesn't look like any vagina problem he knows of and explained what the walls of my vagina looked like. He was able to see that something is wrong but not able to identify it, which was what I was there for. Now that the usual vagina plaguing suspects are ruled out, my oncologist will step in. He then began to ask me out of curiosity what the bone marrow transplant was like. He then asked me what type of pain the situations I went through were like. I was left without words.

I absolutely loved that he asked and was curious because I also have a scientific mind. The part that overwhelmed me is that there was no real description for me to give about the pain involved. After attempting to explain, I told him it was indescribable. Only some one who has been through it or someone who has witnessed it would know. He then explained that women don't usually complain of vagina pain. They may talk about pain during intercourse but straight out pain is unusual. In other words this pain must be way bad.

I left.

And here I am waiting for a return call from my oncologist but it's the end of the day on Friday. I likely won't hear until Monday.

To sum up what's happening, the graft/vs/host has likely flared up. I'm not out of the clear yet.

I can't skip off into the sunset just yet.

It's reverse organ rejection but the new oragan (my blood/immune system/stem cells) are rejecting me and not just me....BUT MY VAGINA. This happened before, I was on huge doses of drugs and had to have surgery to remove all the scar tissue inside. Yum.

My oncologist explained before that some people do well on the smallest dose of the anti rejection but you take them off of it and WHAM, the GVHD goes wild again.

My biggest fear is of dying and or being hospitalized, my second is having to go back on the drugs that made my life hell and third that I will have to have another vaginal surgery. I guess my fourth fear is that my cervix will close up again and I'll be in so much pain I'll need morphine.

Deep breath. One step at a time.

And to relieve anyone's fear who has been through a BMT transplant or is going to go through one, this level of vaginal attackage is not usual. Even within the spectrum of unusual, I am still unusual.

And to also add, the GVHD has not been confirmed yet. Likely they'll send me back to the specialists (because I'm super special). If I'm lucky, it will be something else.


naw said...

oh rose Im speechless reading this as I remember the pain you had before with this and for it to come back to visit you again is not fun or fair... on the bright side I read some where during my BMT that having GVHD is a good thing it means that ugly mr cancer is not there. when my skin all peeled and malted off after my transplant my hematologist was excited about it, I was freaked out and upset as well like what your going through it was scary and painful, so I can sort of relate in a strange way. I know its not like having your sex organ all messed up but walking around like a human snake was not really fun either in fact it was distressing, so I can only imagine where your at right now with this. I wish I was not not across the country so we can wallow in our mutual post bmt misery together (a little dark humor for you) but for now all I can do is send you lots of hope for a speedy solution to your problem... as for your comment about only another person who has had a bmt really understands your 100% correct sister!!!! people in the support groups I go to look at me like Im an alien or dont want to come near me as Im their biggest fear that their lymphoma will come back and have to have a bmt... whats so crazy about it is is that we (bmt survivors) really are unique people on to our own even with in the communities you would expect to know and understand (cancer and medical)... just today in my meditation class I go to at wellspring one of the other cancer survivors asked me what is entailed for a bmt so I explained what mine was like to him and told him there are different regimes and types of bmts but where was a gasp and then dead silence in the room when I finished explaining to him what a BMT was all about. I looked around the room and saw fear in the eyes of these people. So for what ever its worth it people have a different level of looking at bmt survivors I dont know if its with more respect or not but its with a thought of OMG you went through that???... lots of love and well wishes Neil...

Captain Skulduggery Dug said...

Arrgghhh! This post had me pulling my hair out shouting at my laptop, "For fuck sake can't you give this woman a break!"... I'm not sure who the "you" in that sentence is, but I do know this post made me want to kick someone's arse!... well I will kick someone's arse as soon as I get out from under this blanket.

I hope that this turns out to be something that can be fixed or at least controlled easily and if it is a case of having to go back on the drugs try to look at it as you being pro active and telling your misbehaving body to get with the program.

I love that at the end of this post, no matter what stress you are going through at the moment, you remind others that maybe going through a BMT that your case is very rare. Thank you for reminding me to stop being so self centred and whiny. I needed that reminder.

Giant hugs to you lady! You are fantastic! XXX

BaldyLocks said...

Awwww, it was so nice to wake up to your comments. Out of anyone, you guys know in a way, what I'm going through.

You've given me a bit of strength this morning that I wouldn't have otherwise had.

Lots of love back to you both.

Jens said...

Maybe your immune system because of the recent influenza infection is temporarily become a little more aggressive. Wait and drink tea (as we say in Germany). I wish for you, it turns out to be harmless.

BaldyLocks said...

I was thinking that too, jens.

Kyra said...

let me know if you want a visitor this week. i am one of the people who has no idea, but i can tell when a friend needs love and support. xo

Dawny said...

Thinking of you

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Sweetlife said...

I hope you have heard from the specialist by now & that there is an explanation for what is happening that requires only rest and time to heal.

I am in a holding pattern myself these days. Hopefully tomorrow I will get some answers & hopefully they aren't too stressful to deal with as I will be driving to Philadelphia and back....don't want to be a mess & have to drive home.
Bought myself 2 CDs today for the trip...Sting's new winter holiday CD and a Pink CD (feeling rebellious!) I'll let you know how it all goes.
Please let me know how it all goes for you too! Thinking of you as always & wishing for great health!
Jennifer (Sweetlife on CSL)

Isy said...

Dear Creative One, I love your photos and how you write with so much honesty and integrity! I am sometimes amazed at what you "see" and then take a picture of. I'm so dull I would walk by things you photo...and never "see" what you "see." I am always uplifted by your photos! I hope you never stop "seeing" because you have a gift there! I'm so sorry you are struggling with this pain and concern! The idea of having to share that with a doctor who really wasn't sure what to do...sounds like a lot on you! I believe you to be brave and cool and ordinary and exceptional all at that same time! I hope you get what I am saying and I wish you the very, very best and look forward to your updates. Take care of you! Isabelle

BaldyLocks said...

Thank you so much Isy. Sometimes I feel like I'm not accomplishing anything but then someone kind like you let's me know that what I do means something to someone.