Another phase towards healing...

Hi Dear Community

Good Morning everyone.

I started an email yesterday to update everyone on how the Pulmonary Function Test went yesterday, but decided to wait till today.

As it turned out one of the machines were broken so I couldn’t have the full test. But somewhere along the line since my last appointment, Doc Martin and Pricilla have decided they DO want to go ahead and have me start photopherisis.

I have to say with all honesty, I had a feeling this was going to be the case. Something inside was telling me that was going to be the right choice.

However, I am not sure why they have decided to go forward in this way. I don’t know how many times I need to get the procedure done, I don’t know how long many weeks/months I will be in this process.

In short, I didn’t get a whole heck of a lot of answers.

Mostly the answers were I don’t know (this coming from Pricilla as Dr. M. is on vacation).

Her answers were like well you could need to do it for several months, I can’t say. When I pressed her she said “what do you want me to tell you Victoria......5 years!” (ouch Pricilla)

Now I understand that it all depends on my body’s response to the treatment.

But still I felt very much in the dark. What is the average response, since my lung distress is not major, what is the typical response?

All she could say is Dr. Martin can answer these questions. I don’t see Doc Martin till Aug 10th.

Well you know I am being asked to sign up for something that is a big commitment (which I am willing to make and is part of my health and recovery). But it’s kinda scary. I like to remove that factor with a little bit of knowledge of what I am entering into.

But throw a girl a bone and give me something, get another doctor they are walking all over the halls here, get another nurse that might have some kind of answers for me.

Because there I sit with my sweet Lungs, and my wanting to participate in my healthcare and treatment and have info, and all I get is glossed over answers.

I do know this.........

I will go to another hospital as there are not many of these machines around. And all the UCSF machines are booked.

I will go twice a week for a month. Then maybe every other week after that for some unknown amount of time.

The procedure, once hooked up, takes about 4 hours, so really with travel time to Oakland and back home; it’s a 6 hour day.

I cant go to the bathroom or eat during the procedure (this I read online).

It could make me nauseated and extra light sensitive (this I also read Online).

They give you some sort of ultra violet light sensitive med before (also read online).

I do know that it causes me to become even more immunosupressed, along with the Prednisone and tac I am already taking.


What I don’t know………

I don’t know when I will start this procedure (could be 1 week could be 2).

I don’t know if I will remain on Prednisone during the treatment.

I don’t know why they decided to go forward with this, except that my lungs didn’t seem to be better, but this was decided before they received any results from the PFT.

I don’t know if they are still considering this lung distress as minor GVHD( although my thought is it is, because of other factors having to do with chest and lungs are relatively normal).

I don’t know how quickly it starts to work and how they gage the improvement, I guess except me letting them know I can breathe better.

I don’t know if there are other side effects.

I don’t know if this procedure also helps other GVHD, such as skin and mouth and eye stuff.



This much I found out at the end of the day yesterday………

My insurance approved it (Pricilla thought it would take a week to get approval). Pricilla emailed and sent a letter to the secretary of the Dr. who is going to be taking care of me at Alta Bates in Oakland. And that I am to wait for a call from them to set up first an appointment for me to talk with the Doctor and then from there we will schedule the procedures.

I have taken action as I always do. I wrote to "Bridget the wonderful", my Nurse Coordinator in shinning armor. She usually has ways of explaining things to me and makes things clearer. I have not heard back yet, but will be back at the clinic today because they still want to do the Pulmonary Function Test. So I will see if I can stop by here desk.

I was born under the sign of Cancer and as Cancers we tend to not react right away; I always walk away and then later that day or the next day have a million questions. So here I am at 7:30am with some questions.

I don’t feel as stressed today as I did yesterday, I do want answers tho. This is such an example of really being apart of your medical team, ask questions, lots of them, be clear what is going on.


Again the Great Mystery. The Great Unknown. The practice of Patience and being in the Moment. The acceptance that this is part of my recovery and treatment.

And the realization that I am rebuilding my body from the inside out, I am building a brand new immune-system. I am renewing.

My counts are great.

I’m Remission.

I’ve got tons of platelets and red blood cells, leukemia free; swimming around my body. The rash on my skin is better and slowly fading. Eyes better, mouth improving.
I’ve gotten used to the bloatedness from the meds.

I’m now on blood pressure meds, thanks to Prednisone. Man that Medicine is feisty. So that is being managed.

So I just keep breathing and keep being grateful that right this very minute my breath feels normal. And right this very minute my body is working her butt off to repair and heal. And I am healing.

I continue to pray, and talk to my body and my T-cells and ask all to cooperate and rally together to repair those parts of my body that took a hit when the T-cells were first awakened to find they weren’t in Kansas anymore.

This is just a new hill to conquer, a new right of passage toward full Radiant, Vibrant, Health, which I will have.

This is part of it. I accept it but I want to be knowledgeable. I’m a human woman not some protocol. Talk to me Educate me.

So there you go. Long update I know.

I hope that the next update I send I have clearer information for you all.

I feel at peace, with that slight feeling in that background of ummmm are they going to call me today so we can get this ball rolling. The balance we all are challenged with being in the moment with the future so wanting us to pay attention to it and take us away from this beautiful moment we have, the future does this so well by whispering in our ear and trying to evoke worry.
But I choose peace so I’m sitting with her for a while.

Have a beautiful day, Happy August!!! August already!!!!
Big Love to all of you!!! Thank you for paying attention and giving love and good energy and prayers and positive emails.
It means a lot to me.
Purrrrs and Prayers
Love and Big Blessing


Namaste
Victoria