Tuesday, February 23, 2010

The Decision

Well, the final hour has come and gone, and yes folks, we've made a decision.  How it ended up happening is that after days of discussion, and thought, and talk, and many many long hot baths alone with candles lit and incense burning, and blah blah blah...it came to actually making a decision, and Michael said, you can't make this can you? And I said, no.  So he asked if I wanted him to make the decision, and I said yes. 

So here we are.  It is decided.  I am not doing any more chemotherapy, but will continue with my vitamin C IVs and hyperbaric chamber sessions.  I am going to do a cleanse, saunas, and just keep my fingers crossed that I will stay cancer free forever!! 

Because my last chemotherapy session came and went without giving celebration or closure, I felt like I needed some sort of distinguishing or remarkable experience to note this fact that indeed I am done with therapy!! And to acknowledge that my cancer is gone.  We are ready to move on with our lives, start a new, and celebrate life. I'd lost about 2/3rds of my hair, and it was all wiry and thin.  What other time in my life will I ever even entertain the notion of  shaving my head?  So tonight Michael and I shaved our heads.  It is time to start fresh and let the healing begin. 

Want to see pictures?? 

Yes, the household is happy.  And feeling good about our decision.  Lots of love, and lots of gratitude.

So what's next?  Karen is raising money for the Lymphoma and Leukemia Foundation when she runs the ING half marathon in March. We are going to support her and volunteer with the American Cancer Society handing out medals when the runners cross the finish line.  From there we are headed out on our honeymoon!!  We are going to go camping on the coast of South Carolina, and then finish the week at the Arie on Kiawah Island.  Relaxation, revitalization, and nature.  Just what the doctor ordered. 

Monday, February 22, 2010

The Gamble

I've been debating as to post about this or not--it seems intensely personal, but hey, why not bare all?   I am faced with two more chemotherapy sessions...just two...but I am torn in a million pieces as to whether or not I want to continue. 

I haven't gotten my periond in almost 8 weeks now.  And I worry that with each treatment, the likelihood that I'll get it back worsens.  I've been having hot flashes and night sweats every night now for weeks.  My hormones are all crazy, and well, this is just a tough tough decision. 

I've combed the literature on premature ovarian failure..basically if you are in your 20s, you have nothing to worry about, and if you are in your 40s  you will most likely go into menopause.  The 30s??  Well, it's just all up to the individual. 

I've also combed the literature about relapse rate, and standard treatment for Hodgkins.  And, I've been getting on the support group websites, and frankly, that scares the hell out of me.  Relapse rate is 25-35%.  That seems pretty high to me.  Yet I seem to know so many people that tell me -- oh yeah, I knew someone who had that and they've been cancer free for years now!  But it just takes a couple of minutes in the forums to see that there are a lot of people who've relapsed.  I wonder if those are the people seeking forums..and the ones treated and done don't get on them?

Michael and I went to the onocologist  to talk about all of this that has been weighing so heavily on our shoulders.  Surprisingly, he said it would be fine with him if I stopped treatment right now.  We actually had a very good talk with him.  He said there are two types of patients..one, who will do whatever she needs to do to make sure the cancer is gone--i.e. all the treatments, and even entertain the possibility of radiation.  And then there is the patient that weighs the side effects and risks.  He sees that I fall into the latter category.  I want the cancer gone, but I also want to maybe take the small risk that it might come back to decrease my risk of permanent side effects--including, but not limited to permanent lung and heart damage, decreased mental function, and ovarian faliure.  I guess you could say I am a bit obsessive (I think my doctor thinks that).

I was very worried about my lungs because they felt damaged the days following chemo.  The bleomycin can do some serious work to the lungs.  Good news is that I just took a pulmonary function test, and my numbers came back excellent!! 

So I have this huge decision to make by Wednesday.  I have all of these Vitamin C IV's under my belt that I can't discount.  Essentially I've been getting double dose treatment throughout the course of my treatment.  And I'll continue this for several months. 

Chance of relapse is greatest in the first year. 

My hormone craziness isn't helping.  Last week I literally lost it for several days.  I was a slobbering fool, and when I wasn't crying, I felt numb, and depressed, and tired, and anxious, and not ..that..much..fun..to.. be .. around...I haven't been this bad since that time in December.  Remember that??  haha..meltdown city.  Thankfully I can look back on my months of treatment and realize I've done pretty good minus the few breakdowns.  I mean, I could have been this way throughout, right??!

Michael continues to be my rock.  And my parent's are sent from the heavens.  Anyone who can sit and listen to me cry and just hold me through it..I can say I am lucky to have such support.  I try to keep a happy, positive face.  But sometimes I just can't.  And I am glad they don't run the other way.  I mean we are talking about people who aren't as emotionally raw, so I often wonder what they think.  All three of them have also really helped me process it all--the pros and cons.  Talk, talk, and more talk...

So I am out of my crazy lady stage for now. I had a great weekend from start to finish surrounded by friends and this beautiful spring weather.  Dr. Hartle menitoned to me that this will all be over just in time for spring, and then there is rebirth!! And I think about that all the time.

Trip to Vegas anyone?  That is what I feel right now.

Wednesday, February 3, 2010


So here I sit...6 weeks away from being finished with chemo.  6 weeks left out of 6 months! Whew.  It is an interesting feeling. 

This last round wasn't that bad--a mild in the scheme of things.  I can't help but wonder (I sound like the sex in the city chick) if it has a lot to do with the fact that I am almost done. And that the cancer is gone, so I don't have to worry about what if it weren't and all that that would mean.  And that I can see the light at the end of the tunnel.  Or if it doesn't feel as bad because I am not killing as many cells, because they are all gone.  Guess it doesn't matter, as long as it wasn't too horrible, right! I'll take it. 

So now I am decreasing my time at Progressive Medical, the alternative medical clinic I've been going to since September.  And I realize I haven't talked much about that experience.  I mean, I've mentioned that I get vitamin C IVs there, and hyperbaric oxygen treatments.  But really, as time is coming to a close, I realize that it has been much much more than that.  Much more.

I've religiously been going there four days a week for months now.  Each morning I show up at 9 AM, find my spot and wait to get blood pressure taken and IV connected.  My spot was in the back corner.  I picked it because it was by a wall, so I'd only have one other chair next to me, instead of two, so I would only have to talk to one other person if it came to that.  And, it was near a plug in the wall for my computer.  I came prepped with my ipod, and my computer.  And I tuned out the world.  That is until I started making friends.

Fast forward to today.  My beloved corner chair is now not 'mine' anymore, but my dear friend Karen's.  It is the healing chair, and she will be healed next.  Let me tell  you about Karen.  She is a force.  She is one of those people who you will always remember the day you meet them. Her presence fills the room, and in a good way. She is incredibly friendly, engaging, and interested.  She is kind, compassionate, passionate and a champion for the people she loves.  I've gotten to meet some of her beautiful family.  And it makes my heart swell.  Karen will fight for you to the death.  That is the kind of friend she is.  That is a quality I'd like to have more of.  I can't wait to hear the news that she's on the other side of this battle.  Because she will be there one day soon. I just know it. 

So yes, today...(I don't know how to tell a good story)...I come in a bit late, because I attended grand rounds at metametrix, and people are already there--Karen, and other dear friends who I've come to know through this experience.  We are all there all the time.  The cancer patients that is.  And actually, I misspeak. There are a lot of other regulars who are there treating different obstacles.  So it becomes a family.  The regulars, and the nurses.  So I show up, and I've been worried again about my port, and it not giving blood return.  This has been an ongoing problem.  It didn't give blood yesterday.  And today I am sitting there, chatting with the girls--my friends, my family--and the nurse hooks the syringe up, and what do you know?? Blood return!!!  Hallelujah.  And everyone cheers.  It is crazy, this support system.  And then we all laugh about the strange things that make us happy these days.  I was SO happy that the nurse could suck blood out of my chest.  This was a genuine happiness.  This is so strange if you think about it.  But that is what it was.  Blood out of the chest = good.  And we were all happy.  And it was then that it struck me deeply how much these women have really found a place in my heart forever.  And I could tell that the nurse, Patty, was just as happy that we got blood today as I was.  She really cares.    And then we all laughed at each other about how silly it was that this kind of thing is what makes us happy.  Sad, right?

Then there is Andre.  The polish guy that holds all of us women together.  I don't even know his title, I just know that if there is ever a problem, Andre will solve it.  He is there to make you laugh when you are crying.  To fix the messed up schedule, to calm the fires.  The juggler, the enabler.  He told every single person whether he knew them or not about my wedding, and that I was now married.  And in that same vein, he shouted down the hallways the exciting news that the cancer was gone.  His heart is HUGE.  He is the father to us all. 

And I can't forget to mention Lupa.  Oh my goodness, Lupa, the chef sent from the heavens.  She takes such good care of us. She feeds us delicious, organic lunches everyday.  She gives us mushroom tea, kombucha, and green tea.  She gives us good advice, and really really cares.  And feeds us WELL. 

And I can't help but mention Dr. Kimberly.  She has been there from the very beginning.  I knew her before Progressive. She has been there with the most loving support from the beginning--it floored me actually.  She isn't my doctor proper, but everyday she says hello with smiles, and gives me hugs, and her warmth is genuinely appreciated.  She is beautiful inside and out, and I am lucky to know her.   

So I started this post to give tribute to my experiences with the friends I've made at Progressive.  There are so many brave souls that I have met. Each one has his or her own journey, and we all come together at this point in time and travel it together for awhile.  They've touched my life, and I would have never met them if it weren't for this. 

And now, speaking on friendship.  I've made the most unconventional type of friend.  Franny, who I was introduced to from my dear friend Lopes.  Lopes wrote me one day and asked if she could share my blog with her friend Franny who was just diagnosed with Hodgkins lymphoma.  I said of course, and since then, we developed a special kind of friendship. The one that develops due to shared experiences.  She has an amazing story herself, and I am already in awe of her. She lives in Juneau, Alaska, has a husband, and two young daughters, one that was just born a few short months ago.  Wow, what a heavy thing to go through right now.   I told her that I already felt some sort of connection with her--and it made me realize why people like support groups so much.   I asked her if it was okay to share her blog with you all because I absolutely love reading it.  Her outlook is so positive, and she, like me, has an incredible support group.  So yes!  Here's to survival, and perseverance.  Thank you Franny!  http://forthepiroshkies.blogspot.com

Wow, this blog certainly breaks all the rules on keeping it short.  Whew!  If you made it this far, I applaud you!  I don't know what got into me.  I just know that I am sitting here feeling so grateful for what I have gotten out of this experience. I have made great friends.   What a thing to get out of a bad experience??  I will take it!! 

Much love to you all.