Uff da

My computer fried in the storm the other day. So I am attempting a post from the IPad. I am hoping Superman has super techy powers as that computer is on life support and without it I feel as though I am too.

I met with Dr. Bouton, the breast surgeon yesterday. He had a cancellation and so I grabbed the chance to get in to see him. Of course we have just two things planned for August, a golf tourney benefit, on the 11th, and a big trip to the ocean on the 18th or so. But we sat quietly listening to the surgeons busy schedule. His first opening was August 10th. Shoot... The room grew quiet. I took a breath and told him about the benefit. He sat for a moment and then said he'd make some calls and see what he could do. Maybe it was his Texas cowboy charm, or I don't know what act of God given grace occurred, but he came back with a date of August 12th. Thank you God.

With a mastectomy date on board, we now have a few more hurdles to clear. I need to complete genetic counseling, have lab work done, and come Friday I get shoved up in the MRI tube again. As if going head first weren't claustrophobic enough, this time I will go face down. I promptly asked for sedation and have been told two Xanax will be awaiting me at the pharmacy Thursday.

With no clear path opening in front of me as to reconstruction, I will meet with a plastic surgeon sometime after surgery. Again, stage IV rears it's ugly head and managing disease is more urgent than a pretty new breast. However, in time I may be a candidate for DIEP flap surgery which uses stomach tissue to reconstruct a natural breast-it's like a tummy tuck, boob job wrapped into one! I'm starting to feel a bit like a modern day Humpty-Dumpty!

Of course if I am found to have the breast cancer gene, than we may have to take the other breast as well at some point. However, because I am still in active treatment, One incision is all I can manage for now. My blood counts are still a little low and we want to ensure I can heal and still withstand chemotherapy.

So if I am being honest? I am a little sad. A little nervous. But still standing. Still fighting. And mostly feeling washed in Grace and abundance. Thank you for continuing to walk this journey with me... "everyday is a winding road..."

Tee'd off @ Cancer for a cause!

Here is some of my exciting news! Because of the stellar work of my benefit committee, Dakota Medical Foundation has chosen me to be part of their Lend A Hand Initiative.  Dakota Medical Foundation, otherwise known as DMF, will match funds raised by our benefit up to 5,000 dollars!  


Even though many people attended and gave generously at the first benefit we did, many other people did not have a chance to attend and we hadn't been approved yet by DMF. So the committee came up with this fun idea to host a golf tournament and try to raise funds and receive the matching $5,000.  All of the details are posted in my sidebar if you follow the link!  Stay tuned for more fun details of the big day!  

Even if you are not a golfer, you can donate to the fund by following the link to DMF, scrolling down and finding my flyer (my flyer is the first one listed.)  Of course, if you've already contributed and attended the first benefit, please know we don't expect you to do more!  

But in case you've been wondering, let me give you some context of what the reality is financially for cancer patients- regardless of their insurance.  One of the drugs I am receiving through the study is Trastuzumab, or Herceptin (along with a chemo agent, known together as TDM1.)  As long as I am both tolerating the treatment and having no "progression" of my tumors, I will be allowed to receive my chemo drugs, scans, tests, etc, at no cost to me or my insurance.  However, if I were to show progression, or no longer tolerate the drug, I would be taken off TDM1.  At some point, most people on TDM1 will show resistance to it.

At that point, I could continue with standard Herceptin and other standard chemo agents, with a catch. 

Wiki provided this helpful info...

Trastuzumab is also controversial because of its cost, as much as $100,000 per year, and while certain private insurance companies in the U.S. and government health care systems in Canada, the U.K. and elsewhere have refused to pay for trastuzumab for certain patients, some companies have since accepted trastuzumab treatment as a covered preventative treatment.

Just how much will my insurance cover, if it does at all?  Its one of the many unknowns i face, and will eventually have to find the answer to.  Many insurances also limit the number of scans you are allowed in a year.  With the average PET scan costing well over 5,000 dollars this makes sense.  But to a cancer patient who can only know what their cancer is doing based on what is seen on this scan, once a year isn't nearly often enough.  

Hence the burden faced my most cancer patients.  Add in the fact that I have been told to expect I will never be without treatment of some sort.  Because the cancer has metastasized, the cells are everywhere within me and we will never know where they may show up next. I try not to think about that.  And you all enable me to do that more than you know.

My family and I continue to be overwhelmed with all that is being done to ease our burden.  I don't sit with the financial or physical weight of fighting this disease on my shoulders  because so many of you continue to step up and give so generously.  It all matters to us.  Whether its a meal, or card, or your favorite cd, or an email of encouragement, or a golf benefit, it all counts equally to us.  

I keep telling Dr. Panwalkar, I feel lucky... I think he may just be starting to believe me.

In other news...

Blueline hockey camp is officially over for the year!  The boys loved their camp experience and the highlight is when Matt Cullen, from the Minnesota Wild and Mark Cullen, of the Florida Panthers- AHL Rochester Americans, come home for the summer and show up for a day to sign autographs.  Colton rallied from a doubled=over stomach ache to dress in his goalie gear for his last session, since Matt was coming on the ice with them.  Colton only asked one thing of Matt "no slapshots on me, please."  Matt laughed and said he had a deal... but I happen to know his wrist shot is no joke either! 

Matt's wife Bridget asked me if I was "sick" of being at the rink... I said absolutely... NOT.  All day I watched as young player after player lit up when Matt and Mark would talk to them and encourage them.  There were beaming faces everywhere and the joy was palpable.  

 


Left to Right: Matt Cullen, Colton, Mark Cullen