City of Hope here I come
So it’s been about a month and I want to start off with good news. We are on pace to have the stem cell transplant around mid march. Isn’t that great!! I just had a Pet/CT scan done yesterday and the results were fantastic! I do not have to complete my third treatment of ICE ICE BABY! The standard protocol is a minimum of 2 cycles to put you into remission and a 3rd one for good measure. Some people must do a 3rd and a 4th just to get them into remission this is not true for me! Apparently my scans show no visible signs of cancer and thus no third round of ICE!! Yay!! Dr. Forman thinks I am in good shape and can move forward without this last treatment.
Taking a step back, the last 6 weeks or so have been up and down. The 1st cycle of ICE was not too bad. I was out and about after 3 days of rest. But that 2nd cycle of ICE, oh no, It kicked my ass, like Angelina Jolie kicked Brad Pitts in Mr. and Mrs. Smith, I was sweating like Mike Tyson in a spelling Bee and vomiting like one of my moms clients (sorry mom). Simply, I was miserable. I threw up for the first time. I couldn’t get out of bed for 2 days. I lost 5 pounds and thought the feeling was never going away. It took about 9 days for me to feel up to par again and to start doing things on my own. The highlight of the week was a tuna melt I was able to keep down. The scariest part of this was that I was actually living and having to look at some version of myself in the mirror that I didn’t even recognize. I truly didn’t look like me. I did not like that! For the record, chemo sucks. Period.
So now it is Wednesday, February 24th, and I will have a minor surgery this Friday to insert the Hickman catheter in my chest. At the time this catheter will be inserted, they will also be testing my bone marrow one more time, but this time not for Hodgkin’s. This time they will be looking for any chromosomal defects, like the ones that cause Leukemia. Apparently all this chemotherapy may kill the Hodgkin’s cells, but one of the side effects has been leukemia. It is highly unlikely any abnormalities will be found. However, if they were I would be looking for a donor transplant versus donating to myself. But again, this happens in very few cases. So after the insertion of the catheter I will be given a drug for several hours called cytoxin. The only reason I am getting this drug, as it has been explained to me, is in order to prepare my stem cells for harvest we must ‘trick’ them a bit by using a drug they think they have to fight or get “pushed” by, thus producing more stem cells. Doing this along with being given daily shots of 750mg of Neupogen for 10 days (a big blood building drug). I should have enough stem cells to harvest by the 8th of March! I will stay overnight this weekend, but I will be out early Saturday morning. Following this minor treatment I will be giving myself a shot of Neupogen (white blood cell boost) everyday until my stem cell harvest.
We now know that the date of my stem cell harvest will be on Monday, March 8th. We are hoping to go into the hospital March 15th for the stem cell transplant itself (25 day bubble). This all depends on if there is a bed available. I really want to get started so I thought I’d pull the cancer card, but I don’t think it will work at City of Hope. Ha Ha . However as it turns out the way it does with me, Dr. Forman’s head physician assistant’s daughter goes to UC Irvine with me, and she knows who I am? I think I have met her at a party or two. Also, I grew up with this women’s niece and nephew from camp! So maybe I do have a few connections after all. Dr. Forman is calling me the Ferris Buller of City of Hope. Now where is my Ferrari?
I wanted to make a top ten reasons list of when you know you have cancer, but I could only think of 1.
1. The highlight of your day is eating.
Anyway, I will blog one more time before I go in for my stem cell transplant. I encourage visitors because I will be bored. Come entertain me. Hospital said no strippers allowed. Be creative.
As hairless as a pre-pubescent teenager with braces trying to get the hottest girl in school to recognize him,
Ben
February 25th, 2010 at 11:53 am
Hey Ben…you are so brave, you are an inspiration to others. I don’t know if you know who I am, but I’m friends with Pam Bennett. When she talks about you, she has such love in her eyes!!
I wish you the best.
Love,
Jodee
February 26th, 2010 at 11:58 am
Your personality shines through your writing. You amaze me..always and I love you.
March 1st, 2010 at 11:46 am
Ben,
hey guy, I’m sending healing thoughts your way from NH. I did a dance with hodgkin’s myself. Chemo f*#%ing sucks out loud. (refuse to give it a capitol letter since I made it my bitch in 2008).
#2 way you know you have cancer:
you know which recliners are the most comfortable in the infusion unit and you’ll wait an extra half hour to get one.
#3 way you know you have cancer:
Relatives who leave the room to fart and get flustered when other people even swear take it upon themselves to find a way to get you pot….and bake it into desserts for you.
Hang in there Ben.
~Debra
March 1st, 2010 at 7:27 pm
Ben,
I just found your blog online, and wanted to let you know that your attitude is amazing and I truly admire everything that you have been doing for cancer research!
Its kind weird but I also went through Hodgkin’s and my one year remission was just this December 2009. Reading through some of your blogs, it’s crazy how similar our stories are. Chemo therapy was a B***H! But I continued to go to school full time and do internships and ended up graduating from college 5 months after I was done with treatment!
Your drive for awareness and being able to put yourself out there for the world to see is awesome and I wish I could have done the same thing! I wish you luck with your stem cell transplant; you will definitely be fine when all is said and done!
If you kicked its ass once you can do it again! Good luck with everything you do in life, and Cuck Fancer!
-Andrea
March 1st, 2010 at 7:38 pm
Best of lucks Ben! God bless you!
March 3rd, 2010 at 3:41 pm
Ben
I have been reading your blog and ordered the vracelets THEY ARE THE BOMB!!! I am a recent BREAST Cancer Survivor and at home recovering myself from bilateral mastectomy and reconstructive surgery. I wish you well and to tell you you are a brave young man. You are a very up beat and positive person and keeping that attitude will get you through this and so much more in your life. You will go far in your life with things you want to accomplish, as seen by what you have done thus far GOod luck with all of you upcoming procedures .You motivate me !!
March 3rd, 2010 at 3:43 pm
ps we need to follow you on Facebook you should set up a fan page and sell your bracelets and maybe t shirts. What ever it takes to promote awareness and raise money for Cancer, Im IN!!!!
March 3rd, 2010 at 3:47 pm
I put your link to the bracelets on my FBook page that wull get some more sold for sure–Good Luck
March 3rd, 2010 at 9:00 pm
Dude,
53 year old , 3 year carcinoid survivor! Take it day to day, week to week……(3) kids , loving wife in the battle with me, BIG Dead head from way back who never expected this…. faith, hope, hugs and determination will help me / us move on….. hang in there and shoot me an e-mail…. if you want…. bnutter3@gmail. com. I wear your bracelet & think of you (good vibes your way) every day and get many ” comments” about it , which I LOVE!
Peace to you,
Bill
March 8th, 2010 at 11:01 am
Good stuff, Bill. I like your style — of writing, that is. Keep up the good work.
Your friend in kicking cancer’s ass,
Mark Arsenault
March 8th, 2010 at 12:33 pm
Ben you are in awesome hands at COH. I’ve worked there for nearly 7 years as a registered nurse on the bone marrow transplant unit. You’ll love Dr. Foreman and Barb (Nurse Practitioner)
I only work there per diem now but can tell you the nurses there rock!!!
btw I landed on your page because i’m fb friends with Standup2cancer.
March 10th, 2010 at 8:46 am
Dear Ben,
My name is Jean and I’m a volunteer with the National Bone Marrow Transplant Link. Our organization helps patients, caregivers, and families cope with the social and emotional challenges of transplant by providing vital information and personalized support services. We subscribe to Google blog alerts, where we found your story.
Please know that others are thinking of you and pulling for you! To learn more about our programs and services, please visit http://www.nbmtlink.org or call 800-546-5268.
All the best!
March 10th, 2010 at 10:54 am
Hang in there Ben! There’s hope and life on the other side. I am a breast cancer survivor, and was lucky to be working for ChiliTechnology during my treatment so had access to a ChiliPad. Anyone out there who is on Chemotherapy and having trouble with heat or chills – I highly recommend it. It’s a simple mattress pad that cools the bed (or heats it). It has a big temperature range and you can set different temperatures for each side of the bed. It provides comfort for *anyone* with medical conditions where changing the bed temperature is necessary. It was definitely a lifesaver for me, hope this helps someone!
March 10th, 2010 at 3:33 pm
Hey Ben,
Thinking of you and hoping the harvest went well. We are wishing you much love and hope COH is treating you well.
Alyson and Jared