Call Me Lab Rat Number Five

Monday was a big day full of many decisions for Milo and I.  On the drive to Phoenix, we had a few things to consider before we moved forward with anything.  Here’s the rundown:

  • Do we want to do the free egg harvest in Vegas or make embryos here in Tucson?  Decision: Embryos.  We also want to go ahead and find a surrogate because we have decided that we want to do an implantation sometime this summer.  We’re starting our family whether Dr. H likes it or not.  Life doesn’t wait and I’d give up my entire bucket list to be a Mom.  In fact, my original bucket list read 1) Get married and 2) Start a family.  I removed number two when I was diagnosed.  I never should have and it is going back on as of today.
  • Do we take up Lyn’s offer to talk to a homeopath?  Decision: Maybe later.  I’ve always tried to find the balance between conventional medicine and homeopathy.  I think somewhere they can work together and be beneficial to a patient.  However, if giving up conventional treatments is what is necessary for homeopathic treatments to be done, I always worry.  I wanted to give the doctor at Mayo Clinic a chance before I wrote off formal medicine.
  • Do we want to try the new chemo if Dr. Borad at Mayo didn’t have any new suggestions? Decision: Unsure.
  • Who would we want as our surrogate?  Decision: We have had a lot of offers, but the very first one came from my sister-in-law, Susan.  We decided we’d discuss with her and the other surrogates, see who was still interested and run them all by Dr. H to see whom he would thought would be best.  We’d then worry about travel arrangements and such.

So with some control in our hands and a plan, we arrived at Mayo Clinic ready for, what we hoped, wouldn’t be another disappointment.  Much like Dr. Ong’s office, Mayo Clinic is an example of what health care can look like when unlimited in funding.  Large windows, a live pianist, gift stores, a lovely cafe…it was like walking into a four star hotel and not a doctor’s office.  It was soothing listening to the water fall and, despite being nervous and still having some back pain, I felt rather good being there.  I was definitely hopeful.

My hope was not misplaced.

For the first time in months, I finally found someone who had a plan of action.  Dr. Borad expressed interest in me as a study because I was young.  He immediately said he would run the DNA for my tumors as part of his grant money program and we’d have it back in a few months.  The cost: none to me except time.  He is going to biopsy my liver again and my lungs (YAY!) to do a comparison on the DNA and type of cells.  He said there’s a small chance what is in my lungs could be some kind of infection and not cancer at all.  Wouldn’t that be nice?

The only down side: the biopsies will have to be done at Mayo hospital in Phoenix and the lung biopsy could require a hospital stay.  Hello financial drain.  I just tell myself that a treatment plan and possible remission is worth everything I have.

He then told me I qualified for a research study (YAY!)  I will be part of a study of PEGPH20 –yea, it meant nothing to me but “lab rat” too.  Apparently, cholangiocarcinoma is what they call a “solid tumor”.  It tends to be contains a layer of scar tissue that doesn’t really absorb chemotherapy very well, which is why they find radiation works best on it.  Can’t miss with radiation.  PEGPH20 is expected to break down the scar tissue and reveal the tumor, which can then be hit with more traditional chemotherapy agents.  Dr. Borad would like me to be one of the study participants, I agreed, and sometime at the end of May we’ll start with the clinical trial.  In the mean time, I have radiation with Dr. Mack, a fertility specialist to harvest eggs, two biopsies to have and a thirty-first birthday to celebrate.  I won’t be busy at all.

Today, I find out what I can do about work.  I’ve missed four shifts because of appointments and back issues, which decreases my stocked PTO pretty badly.  I need to get back to work as soon as I can so I can start saving PTO again and still be flexible for all the appointments.  My boss has been amazing with working things out, I hope we figure something out because I definitely need to keep my insurance.

And finally, here’s my plea:

Yesterday, when we made the decision about working with Mayo Clinic and getting the egg harvest done, Milo and I had some logistics to work out.  Mayo is two hours away and for some of the tests I would need to be there multiple days.  Fortunately, my dear friend Deb offered us a place to stay when we need it.  During our talk, however, I expressed concerned about financing the egg harvest and balancing the forthcoming medical expenses.  While anything involved in the clinical trial is free, the biopsies, I believe, are not included.  With the potential of needing to go out on disability, even temporarily, is looming ahead, there’s a lot that we will need help with.

Deb had a solution that I had considered but wasn’t sure would work.  She was confident it would, however, so here it goes.

I know times are tough for everyone, but help is most definitely welcome.  I know there are a lot of scams out there, but I am not a scam.  I’m a thirty-year-old woman who has been pouring her heart out on this blog for eight months.  I’ve posted pictures of myself and my scars, I’ve been honest, sometimes overly so, with each of my readers.  I’m doing the best I can; we all are.  So if you feel so inclined and have the means to do so, I have added a donation button to the website.  The button works through paypal, accepts credit cards and does not require you to create a paypal account (or so paypal has assured me in my signing up for the button.)  If you are not comfortable using the button or paypal, you can contact me and I will privately provide a way to donate.  The money is going towards medical expenses.  The donate button can be found on the sidebar to the left.  Please consider helping, every little bit with make our dreams come true.


2 thoughts on “Call Me Lab Rat Number Five

  1. Tawnya says:

    Wow!! So much going on and very exciting Janine. I pray that all of these work out……that remission is within reach soon, that within a year we have little bundles of bliss to hold and you slay this freaking cancer!!!! I love you so very much!

  2. exiledtyke says:

    I am really glad you found someone with a plan of action.
    I wish you look with your fundraising. Once I’m in employment there’ll be a donation.

Support is always welcome.

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