Wednesday, July 28, 2010

Good news!

I found out today that my ovarian cyst has shrunk, and my estrogen has come way down!  So the doctor has given me the go ahead to start the medications!  So in two weeks'ish we should have egg harvest! 

Tuesday, July 27, 2010

the universe slaps us in the face...

Well, within an hour of writing that post I heard from  the doctor who led the CD 68+ research and he replied to my question on his opinion in my case.  He of course couldn't answer me specifically without seeing me, but he said the best chance for survival is the high dose chemotherapy with stem cell transplant despite macrophage content. 

And then, minutes later I check the mail and I got a letter from Dr. Gonzalez in NY who I'd applied for a second opinion.  He said that cure rate for standard treatment for Hodgkins was too great for him to recommend nothing but that.  So he won't see me.

So two doctors within an hour recommend stem cell transplant.  And stem cell transplant has a probable chance of not working in my situation.  Great.

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 so many bombs I've received in the past year. 

...but as we have time to process, a few things come, 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:

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!

Tuesday, July 13, 2010

don't wear fear

I am at home after two long days at 4 different doctor's offices.  I have a couple of hours before Patty and Mary come over for meditation, and a storm is rolling in.  I am making pickles from our gazaabs of cucumbers from our garden and am working on feeling happy and content.  And then Cat Stevens comes on over Pandora.  I've loved loved this song forever and every time it comes on I smile.  And it didn't fail me today. 

Cat Stevens Don't be Shy

Don't be shy just let your feelings roll on by
Don't wear fear or nobody will know you're there
Just lift your head, and let your feelings out instead
And don't be shy, just let your feeling roll on by
On by

You know love is better than a song
Love is where all of us belong
So don't be shy just let your feelings roll on by
Don't wear fear or nobody will know you're there
You're there

Don't be shy just let your feelings roll on by
Don't wear fear or nobody will know you're there
Just lift your head, and let your feelings out instead
And don't be shy, just let your feeling roll on by
On by, on by, on by, on by, etc.


well, whether or not you believe in this stuff...reading this today sure gave me the extra boost I need right now to keep on going.  This is from Rob Brezsny's Astrology Newsletter.

VIRGO (Aug. 23-Sept. 22): I want to see your willpower surge and throb
and carry you to a ringing triumph in the next two weeks, Virgo. I hope to
be cheering you on as you complete a plucky effort to overcome some
long-standing obstacle . . . as you put the finishing touches on an epic
struggle to defeat a seemingly intractable foe . . . as you rise up with a
herculean flourish and put the stamp of your uniqueness on a success
that will last a long time.

Pretty awesome pep talk, eh?

 I've been quiet here.  Lots going on, but not feeling like writing about it.  Basically I am either at the doctor, or making doctor's appointments, or talking to insurance companies, or pharmacies, or filling out applications, or getting medical records, or second opinions, or tracking down information.  And then doing it all over again.

Saturday, July 3, 2010

the reality

What a crazy roller coaster life has been lately.  My mind reels in a hundred directions, with the constant reminder that toxic thoughts will make this whole process more difficult.  So this go around I've realized that my mental health is as important as my physical health for the positive outcome that I know we will achieve.  Fortunately I am surrounded by people who can help me with this.  I feel like we are fighting a war, and we've got one hell of an army!  Everything from the scientific/medical team, to the mental/emotional team, to the health/healing team.  And I truly believe that all of this, once I reach the other side, will make me a better person... and one who will be able to help others like me one day.  Because if I have learned one thing, it is much easier if you don't have to do this alone.  And I've found support in unlikely places from people I have just barely met who've opened their heart to me, and I am touched beyond belief. 

Patty has turned me on to the teachings of Byron Katie, and as new as I am to her, the central dogma of her philosophy is that wanting our reality to be different than what it is causes pain…so just accept what is.  And strangely I get some relief from that.   With this calming, it seems I can make more rational decisions and actions as to how to merge the desire/reality path. 

So what is the reality right now?  My last post seemed pretty definitive, but, well, what is the saying?? "A woman who doesn't change her mind doesn't have one."  Well, I guess I can't say I've changed my mind, but I've opened it up to more possibilities.  The whole process of stem cell harvest, high-dose chemo, and then stem cell transplant with quarantine sounds pretty scary.  They are gong to kill all of my bone marrow (let alone all the other damage it can do), and rely on the cells they harvest to make me whole again. I know that this has been a very successful treatment for many, and is groundbreaking and life-saving.  I am incredibly grateful for the research and science that has made this possible as it might be what saves my life.  But I've taken a step back and want to see what else I can possibly do to not have to go through this.  

This whole fertility issue has actually bought us some time, which, upon thinking about now, is a blessing. I have these weeks to not sit idly by, but to do something, and we will see what comes!  We've decided that I am going to work on implementing a raw foods diet, increase my Vitamin C IV's to 4 times per week (Dr. Drisko has seen people who have relapsed go into remission purely from this alone), add in things like higher dose curcumin (thanks Dr. Hartle!!),  and other polyphenols that can dampen the inflammatory response. It is a bit ironic that my graduate work might be just that that helps save my life. 

Patty found a really interesting article on Hodgkins and it shows that there are very few cancer cells in these tumors, and the cancer cells are surrounded by inflammatory cytokines and other inflammatory cells that actually fill out the tumor.  So if I can dampen the inflammatory response, I can slow the growth of the tumor!  I am going to do heavier detox with saunas and exercise with nutrient support.  And once I can get my eggs harvested (end of July) I'll head to a raw foods retreat center in Ithaca, NY.  I lived/worked there in 2002 for a summer, and know it as a place dear to my heart, and good for healing of the best kind.  
I am going to work on the emotional aspect of all this too with meditation, counseling, and group work. I've been introduced to new healing  modalities such as NET and chiropractic work, homeopathy, and spiritual development.   I am finding this as critical as the physical health aspect. 

I am ready to cleanse the body and mind so that it is ready for whatever life has to throw at me. 

After these things I hope that my oncologist will give me a script for another PET scan to see if any of this has made a dent. And then we will decide what to do.   

So there you go...that is reality for now.  Who knows if it will change, but I am not going to worry about that now...

Happy Fourth!