Thursday, May 2, 2013

Scans and Prayers Please!

Well a few updates since my last post.  The day after my last post I learned that the trial I was going to participate in was cancelled due to low enrollment.  I was disappointed and a little nervous because I felt like this was my next step.  I pouted around the house for awhile since I was still off due to surgery and then I decided to indulge in a chocolate milk shake.  Most know, I have tried really hard to cut out dairy, sugar and fats from my diet.  I splurge every once in awhile, but I have never really turned to food during stress so this was new to me.  I then got over it because I reminded myself that one arm of the study was just diet and exercise....I can do that on my own, right?  Sure I can....(In the garbage went the more than 1/2 drank milk shake) I was not guaranteed a cure, it is a trial.  I will get through this.  I e-mailed a cancer buddy that I will address later on and asked her if she could offer me some encouragement and I decided move on.  Look for the next best thing.  

Saturday, 2 weeks ago, I spent some time while Ryan was napping and Justin was watching a movie researching some trials and came across one that is out a New York hospital.  The trial is a copper depletion pill that is being offered to breast cancer patients, specifically Triple Negative.  The trial is in a 2nd phase and the point is that this pill brings your copper levels in your body to where they should be.  I guess they tend to be higher when or if you have cancer.  So the trial is looking for candidates that have a high chance of re occurrence (check), triple negative (check) and cancer free (better be check)  So I e-mailed Dr. Hantel and e-mailed the coordinator of the trial to learn more about it.  Basically assuming my scans are clear, I will need to travel to New York one day a week every other week for 2 months.  The point is they are giving you a dosage of the copper depletion pill to get me to a level that is normal for my body.  Once I reach that point, could be earlier or could be later, I will go once a month for a 1 day appointment to have blood draws to ensure I am still at the right level.  This will go on for 2 years.  Count me in!!  This was a good day!

Fast forward to last Wednesday, I get an e-mail from the coordinator of the first trial that is local.  We may have enough enrollment, if you want in, you are in.  Let me know soon.  I then e-mail Dr. Hantel to get some advise.  I wanted his thoughts on the copper trial versus the diet and exercise trial.  I was not expecting him to jump up and down and praise me for finding a cure, but his response was not what I expected.  He basically told me that while the copper trial looks promising, it is a very small trial and that he has been around for awhile and knows that these drugs come about a lot and they never get passed as a method of treatment.  In his opinion, he would not put his family in financial stress by traveling back and forth to New York.....Thank you very much you jerk!  Was my first thought.  I was very confused on what I should do.  I finally just disconnected and thought the answer will come to me.

Next was last Thursday, I spoke above about an e-mail to my cancer buddy.  This is a lovely lady, Jude Borling.  She is Pastor Don (he married Don and I and christened both boys) wife. Pastor Don had reached out to me several times during my cancer journey and asked several times for me to reach out to Jude who had been fighting stage 4 cancer for 3 years but was proving to be winning her battle with diet.  I didn't reach out to her for awhile because I was shy about it, she had her own battle, I don't want to lean on her.  I'll bet being a Pastor's wife, she has to support a lot of people.  But after Christmas, Jude reached out to me.   We met and talked like we had known each other for years.  She was so positive.  We both quickly felt a bond and talked about how each of us were inspiring the other.  We e-mailed one another and kept in touch.  She continued to offer me advise and words of encouragement and I did the same.  Well, she e-mailed me around Easter with the news that her cancer was showing back up:(  She decided to travel to Bulgaria for a mineral that had some positive outcomes.  While she was away, I had e-mailed her a couple of times and did not get a response, never did I think she was struggling.  I was confident she was going to return home and let me know she was cured.  Last Thursday Don called me to inform me that she had passed away.  This was very difficult news for me.  I call Jude my hero.  She was truly giving me the feeling that I could beat the crap out of cancer.  I think what made me sad was I am afraid she was reading my e-mails knowing how much I look up to her and thought she could not bare to tell me that cancer was winning.  I was so sad and let down on Thursday.  How could this happen to her?   To her family?  She is a mommy, her kids need her!  Pastor Don needs her.  I was really bummed, but I know that cancer didn't win, she did!  Her obituary said it best, she fought her battle with dignity.  Yes she did, she was put in my life for a reason.  She helped many people, I am sure of that.  I know I am not the only one that lost a hero last week.  She had a heart of gold! And while she is not here on Earth to be my hero, she will still see me through this.  

So even though I did not get words of encouragement like I had expected from her when I had e-mailed her after the first trial was cancelled,  I now have a realization:  Who is Dr. Hantel to burst my bubble?  I am not putting my family in financial stress to travel to New York.  I am out of a job in June, but fortunate enough to have insurance and a pay check through January.  This is falling into place....If I had a full time job, would I be able to travel to New York every other week for 2 months?  No.  Would I be able to leave my kids to go to New York once a month and work full time without feeling guilty that I am not giving them enough attention?  No.  Do I want to prove Dr. Hantel wrong?  YES!  So guess what, I am ready to do this trial!  I just feel like things are falling into place.  This trial was found on purpose by me.  I get that not every one would be able to travel like this.  But I have the biggest support group: Offers to help with the kids, a best friend that designed t-shirts and that provided us with some extra cushion that we have tossed around what we would do with the money.  Now we know.  I have one hurdle left....I have to have my scans and they have to be clean.

So that leads me to my request.  I have a CT scan on Saturday, Bone scan on Monday morning and a brain MRI (requirement for the trial) on Monday night (9:15pm to be exact)  The results will be with Dr. Hantel when I meet with him next Wednesday at 3:00.  They are scheduled and now I'm going to try to put them out of my mind until Wednesday.  This will be very difficult and I can already tell I'm a little short tempered because let's face it, I should not have to worry about this.  But I do have to and they have to be done so what I ask from anyone, please pray for me.  I need a sense of calmness as I go through the next week and I need to have CLEAN scans.  Please pray for me!  And please pray for the Borling family.  Jude's life will be celebrated tomorrow afternoon and evening.  I know she is at peace and no longer has to try to stay a step ahead of cancer.  She won, but I also know how difficult this is going to be for her family, so please keep them in your prayers.  

Amber

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