the path

For some reason this time around I've been much less vocal here on the blog.  I don't know the reason other than the fact that I am totally consumed every single day on thinking about myself, and my options, and my treatments, and making lists, and crossing things off lists, and making phone calls, and researching, and reading, that I don't feel like spending more time thinking about myself by writing updates.  But, a benefit from this is that my endurance for such things is dramatically improving.  I think of it like I am  training for a marathon, and reaching that point when you realize, that yes, I know I will be able to do this! (not that I've ever trained for a marathon). What's one more mile...what's one more call to an insurance company...

Maybe another reason I am not posting is because we still don't have the path carved out for us yet.  Although as I type that I realize the absurdity in that statement...I mean, I am on the path that I am supposed to be on, as I feel it deep within my heart this time.  Just because decisions haven't been made doesn't mean that the path isn't chosen.  The path right now is inquiry, discovery, education, and listening to that place in my being that knows what is right, and not rushing into treatment out of fear. And boy do I have one hell of a team to help me with this.  Patty Bralley has proved to be my first hand woman in this detail.  Her mind for science and research, and her ability to synthesize and summarize for me is a blessing beyond measure.  Not to mention the fact that she is there for me emotionally too.  What an incredible combination. 

I feel from the depths of my soul that I will beat this, that WE will beat this, but I see that it won't be an easy road.  In exchange for that however, I am getting the best education I can hope for--I am learning about all things cancer--acceptance of diagnosis, biology of the disease, perseverance of heart, attention to that intuitive voice inside,  love, the power of the mind, strength from others, and a fighting spirit. I am hopefully learning skills that someday might help others going through this.  Because truly, unless you've experienced it, you don't know.

I am in a totally different place than I was 11 months ago when I learned I had cancer.  Then, it was scary as hell, but there weren't many choices to make.  ABVD cures 70% of Hodgkins patients.  And I coupled that with a healthy diet, high-dose Vitamin C IVs, supplements, and hyperbaric oxygen therapy.  The cards were stacked in my favor. So why the relapse?  Well, right now I am sitting in a place feeling like there is just more to learn in this experience. And there are a hell of a lot more decisions to make, which is an exercise of the mind, the heart and the body in itself.

An interesting article came out in the New England Journal of Medicine in March of 2010.  And yes, this is one of those journals that traditional MD's pay attention to.  Patty armed us with this paper before our meeting with the bone marrow transplant doctor.  Basically what the researchers discussed is that the treatment of Hodgkins Lymphoma hasn't changed in over 20 years.  They have no good markers to determine how well someone will respond to treatment, so most people end up getting too much of the destructive treatment just to make sure bases are covered.  And even then, 30 % of people either never reach remission, or have early relapse (me).  These researches however have discovered something that can separate those who respond well to treatment compared to those that don't.  By measuring the amount of CD68+ macrophages in the tumor mass, they can predict response to treatment.  The more CD68+ macrophages, a statistically significant increased chance of relapse, a poorer chance that one would respond to a stem cell transplant (which is what they want me to do), and an overall poorer survival rate. 

So we asked the bone marrow specialist to look at my lymph node biopsy that was taken in August of 2009.  It is amazing that they still have it, but they do!  And the doctor had heard of this study, so he was fortunately on board. 

Now, arming ourselves with what these results might mean....Patty was originally afraid to share this paper with me because it talks about that percentage of people who aren't cured from this disease...But really, after reading, it seemed like a very important piece of information to know before embarking on this incredibly serious treatment regimen of chemotherapy, stem cell harvest, high-dose chemotherapy to kill bone marrow and stem cell transplant that will permanently diminish my quality of life by way of chronic fatigue, headaches, memory loss, sexual dysfunction and menopause, not to mention that I will have a 6-fold increase in my chance of getting leukemia eventually (this was what was told to me in the little booklet the stem cell doctor gave me at the appointment). 

So the doctor ordered the test and the results came back...I am in the highest risk group, the group that has greater than 25% CD68+ macrophages in the tumor mass. 

That bomb drops...like so many bombs I've received in the past year. 


...but as we have time to process, a few things come up...one, we aren't really that surprised.  In my mind it comes from logic...I mean, we did what we were supposed to do, plus some.  And it still came back. In Patty's mind, it isn't logical at all, but intuitive, and she actually feels good about the news.  As does Michael and my parent's.  GOOD.   We feel good about the news...

It is a strange place to be sitting in.  I find out that the cancer that I have is one of the more dangerous forms of Hodgkins, one that has a poor response to the standard treatments.  Yet, I responded initially very well to ABVD.  I had gone into remission.  So there is still hope.


It is good to find this out before heading down this path of stem cell transplant that will take my immune system and beat it to the ground. We interpret this as a NO... stem cell transplant is not the answer.  This is a major big assault on the body, and to find that I might not even respond to it makes me fiercely want to explore other options. 

And so we come to MD Anderson Cancer Treatment Center in Texas.  They are well-known in having specialists for many different forms of cancer.  There are two for Hodgkins.  I read a transcript of an interview with one of the doctors and was impressed.  Her vision is that one day we will find the personalized treatment of this disease.  They incorporate many more therapies besides the standards that we are exposed to here.  And that interests me greatly.  So we are set up to travel to Texas to have an appointment to see what they have to say.

This is one avenue.  We have looked into many many more.  I have reinstated high-dose Vitamin C IVs 5 times per week and my oncologist has ordered a repeat PET scan so we can see if there is any impact of these on the tumor.  Michael has been trained by a nurse to give these IVs to me at home, so I am now calling him nurse Michael :)  I have also added curcumin in gram doses into my daily regimen (something an MD Anderson oncologist is studying and finding good results in pancreatic cancer).  Diet..don't even get me started....raw or not...but we've decided not, as Chinese Medicine says Cancer is a cold disease, and you need to feed the body warming foods, not raw.

I am seeking/researching second opinions from these clinics:
http://www.dr-gonzalez.com/index.htm
http://www.gaynoroncology.com/
http://www.euro-med.us/
http://www.mskcc.org/mskcc/html/69402.cfm
http://www.burzynskiclinic.com/

I am also working a lot more with energy movement.  I could write a whole post about this and have had some pretty amazing things happen since trying this.  It seems crucial to my recovery, and I will expand more on it soon.  But it is big, and important.  And too much for my energy level to verbalize right now...

And finally, about the fertility preservation...I went in on the first day of my period to get an ultrasound and blood work for the go ahead for the two-week process.  This was on the weekend of  Transformus, the most mind-blowing event I have ever been to, but had to decline this year because of all of this--instead I am at the doctor, a hard pill to swallow.  The nurse found I had grown a 3 cm cyst that wasn't there on initial work up on my left ovary that was producing estrogen 10-fold more than what they need to see to do the procedure.  So the doctor put me on 10 more days of birth control pills to hopefully shrink the cyst.  I find out tomorrow if it has gone away. If so, we can go forward.  If not, I am abandoning the whole thing and moving on (even though I have $6,000 worth of donated fertility drugs in my refrigerator right now, thank you Lance Armstrong and EMD Serano.)

So that is the update, in a nutshell.  It seems like a long read, but is nothing compared to what we've been living.

My team is amazing.  Amazing.  Gifts come in so many ways.  Mom and Dad are right by our side every step of the way. We talk every single day, and their open ear mean the world.  They have been incredibly gracious in relieving the gigantic stress of money and cost of this whole thing, which is huge.  My dad showed us his fatherly love by buying and installing us a home house water filter.  Patty, like I mentioned, is right there and is fierce in her dedication and love.  Michael of course, ahhh, my sweet love, who keeps me sane, and lets me laugh, and cry, and live life.  Becky, I thank you for allowing me to scream, and Margie, your love is strong.  Rin and Chuck, you are my second parent's and I couldn't be more lucky.  My love is with you and your family as you also walk the rocky path.  And Grandma, she is just so incredible, she's been showing her strong love with Reiki and heart.  There are so many people that I need to thank over and over again.  I've received amazing medical advice, kind gifts in the mail, sweet letters, and lots of hugs.  I could never do this without all of you.  

And this post was possible thanks to the space that was made for me because our water heater died and I had to leave work early to let the workmen in to replace it.  So thank you water heater for breaking--a post was overdue...And thank you Michael for allowing us to pay for someone to install it so I can spend more time with you, instead of you having to fix in on your own, which I know you could!