- NHL Treatment
- Hodgkin's Treatment
- Clinical Trials
- Monoclonal Antibodies
- Types of NHL
Lymphoma and Pets
(c) lifestyleoftheunemployed.tumblr.comI wish that it were different, but I ended 2012 on a downbeat. The legitimate physical constipation that I feel has permeated into the rest of my life. I’ve been emotionally and creatively constipated too. I’ve been extremely tired and distracted, unable to focus or to fully invest myself in anything. I really let myself go over the past month with bad eating and drinking habits. I stopped practicing yoga. I started sleeping a lot. I stopped juicing. I started eating dairy and sugar again and oh, guess what? I feel like crappola. I’d venture to guess that I’m not the only one that hates themselves after the holidays.
I’ve been crying a lot, feeling lost and confused about what direction my life is taking and about where I fit in the greater scheme of things. I feel like I’m so different from everyone around me who seem to be so much more interesting and at ease – and also so different from whom I used to be. I’m now more removed, quieter, and self-conscious. I get easily frustrated at my feelings as I know it’s just my own crazy manifestations. I’m in serious need of a boost.
I looked back at last year’s blogs around this time and I was going through a similar emotional “nadir.” Maybe the end of the year is just tough for me for whatever reason. All of that hype and togetherness and connectedness fading out to just me, again alone each day trying to figure out how to make the most of it and what in the world that means.
Physically, I also feel pretty crummy. The wonder drug I’m on seems to have started taking its toll – or, the lymphoma is flaring. Either one sucks. I’ve been on the Revlimid pills for a solid three months now, currently taking 10mg nightly and 20mg every fourth day. I don’t know that I’ll be able to handle that regimen much longer. I have a PET Scan scheduled for next Wednesday, Jan. 9, my first since being on this drug. We’ll see how it’s working, if I need more or less of the drug, if I’ll stay on it, or what the next steps might be. I’m trying not to hypothesize and trying rather just to be patient and wait for what is to come – whatever is to come.
A new year brings with it a tremendous amount of potential but for me it also brings a tinge of fear as I’m so accustomed to each year bringing some crazy new medical challenge. I hope that this year is different, however, and it brings positive challenges surrounding my writing career and building a family. With each year that I make it, I find a tremendous amount of pressure because I realize that I’m being spared for a reason. Someone wants me to keep going and I need to figure out why. With every Jan. 1 that rolls around I’m given this incredible gift of entering another year of life. For that I am so incredibly grateful. I want to do the absolute most with it, which can be so exhausting. I put an awful lot of pressure on myself and I need to stop doing that and begin better placing my energies.
I need to get out of my own way and get my writing out to literary agents in hopes of actually landing a book deal for my memoir. It needs to get out of my laptop/head and into the hands of people that can do something with it. I did a lot more writing in this past year, but not enough of getting it out there. I need to knock off the shyness and get a better plan of action. I’ve been rejecting myself before even trying. I have gone through all 425 pages of my manuscript, which I’ve edited and am now whittling down to something much more manageable. Simultaneously I’ve been putting together a book proposal, which is currently a fragmented mess. I need some help and direction.
Kismet seems to have stepped in to bring me the opportunity I need. I found out today that I was awarded a full scholarship to the San Francisco Writer’s Conference, including entrance to the Speed Dating with Agents event. I am beyond floored and humbled that I was the winner. I was chosen based on a piece I wrote about writing as healing. The conference just happens to be three days before our planned vacation to San Francisco this February anyway, which is why I went out on a limb and applied. I’ll have the opportunity to put my work and my face in front of dozens of agents, editors, publishers, and famed writers. I will certainly have my work cut out for me between now and February to get this memoir into a tight proposal package. This is just the pressure that I needed.
We are also exploring surrogacy options looking for someone to carry the three embryos Craig and I cryopreserved after an IVF procedure in 2010 before my first transplant. I have abandoned the hope that I’ll ever be able to carry those embryos to term myself. It wasn’t even a difficult decision, as I know that my body would not be healthy enough to handle a pregnancy, nor do I believe that it would be safe for a baby to grow within it with all the toxins that are lurking in there. However, we still have three vials of potential life – our own DNA that we are ready to attempt to bring into the world. Now that we’ve realized we’re not waiting for the pregnancy go-ahead for me any longer, we just need to find someone who may be willing to help us fulfill the dream we have of becoming parents. Bueller ... ? This will no doubt be an incredible new chapter in many ways. We talk often about what it will look like.
For the past two years I’ve listed the highlights of the previous year and my intentions for the next. So, for tradition’s sake, I’ll do it again. Last year, my intention was to “let go of the life I have planned so as to have the life that is waiting for me.” I believe that I worked very hard at that this year. 2012 was a year of rebuilding and growth. Without such a regimented treatment schedule, I had more freedom to explore what life has to offer and what I have to give it. However, I’m not there yet. I still get caught up on where my life would have been without this disease and need to continue to pull myself back and focus on all that I have, not what I don’t.
For 2013, my intentions are:
- Stop questioning so much
- Eat, sleep and exercise better even when I’m feeling well, especially when I’m feeling well
- Give myself some breaks and be more understanding with myself when I am having a bad day or a tired day or an angry day. I need to allow myself that. I’ve been through a lot of shit.
- Write. Write. Write.
- Land a book deal. Period.
- Get my sparkle back (Shine bright like a Diamond as Rihanna would say)
- Be more connected to people and causes, not so afraid of opening up fully
- Take a leap of faith at becoming parents, while understanding that the odds are slim, but that the possibility is true
- Volunteer consistently so that I can finally give back all the good juju I’ve received – many ideas on this front
- Create a better routine for myself that allows for some sense of normalcy
- Continue to challenge myself with new work projects and expand my little consulting business
- Spend more quality moments with the people that are special in my life
- Love myself even when times get hard
- Continue to build a strong body/get back into shape
- Become part of a community – working alone can be very lonely
- Be more outspoken
- Make a difference
- Pay it forward
- Push myself out of my comfort zone more: no more hiding behind the cancer traumas. The past is the past. The future is unknown. All I have is today.
The quote I intend to frame my 2013 around is:
And in the same vein:
"We must continually be jumping off cliffs and developing our wings on the way down." - Kurt Vonnegut
There is nothing to be afraid of anymore. There is no need to hold back and worry about the “what ifs” because there are no answers to those questions; the only answer is what’s happening in the now. All I can do is try, to push, to experience, to explore. I’m sure I’ll fall at times, but I know from experience that the figurative net will catch me and I’ll get back up and try again. 2013 will be a series of leaps for me.
Standouts from 2012:
- In general, one of the best years in recent memory. It is the most stable my life has been in a very long time. The treatments I was on allowed me to live my life relatively unaffected. Except for a couple small blips, things were smooth and life was glorious.
- Had a piece of my writing staged by professional Broadway actors and performed in front of an audience of hundreds. Bonus: I just received word that a piece I submitted this year was chosen for to be staged for the 2013 production!
- Had my first op-ed piece published in the Hartford Courant
- Took a non-fiction writing class and attended a few writing festivals which helped me to gain confidence, skills and a better understanding of the industry.
- Except for very few exceptions, I stuck to my blogging twice a week goal – though like today, Tuesdays sometimes spilled into Wednesdays and Friday posts became Saturday morning posts, but that’s not the point
- Traveled back to LA to see a friend get married and do some further exploring of Venice and Santa Monica, which have now become some of our favorite places
- Traveled with my family to explore the natural treasures of Nevada and Utah (Valley of Fire, Zion National Park, and Vegas included)
- Attended First Descents Surf Camp where I met some incredible fellow young adult cancer survivors and learned how to surf
- Spent a lot of time stand-up paddle boarding along the river with my husband with the board he got me for my birthday
- Wrote some interesting pieces for Hartford Hospital’s magazine
- Had what I consider to be one of the best summers of my life filled with adventures, friends, warmth and exploration
- We got a Jeep Wrangler - our dream car - and loved every minute of riding with the top off, off-roading and now ramming through the snow
- Spent time on Cape Cod with an incredibly dear friend
- Marked my 30 year milestone with a big outdoor bash at our home to celebrate both Craig and my birthdays and my one-year post allo-transplant, complete with taco truck, live band and bouncy house
- Gained back the 30 pounds I had lost during transplant
- Lived in NYC for two weeks while receiving targeted radiation enjoying every minute in the city (except for those on the radiation table)
- Spent a wonderful week in Bar Harbor, Maine with Craig and Sammy Dog: the absolute perfect vacation exploring the beauty of Acadia National Park and the quaintness of Bar Harbor from our little dog-friendly apartment above the vet clinic.
- Lost a very dear friend, a loss that I feel every day, but a spirit that I can look to for strength and guidance
- Was there to dance and celebrate as six sets of friends got married throughout the year
- Welcomed in a new sister-in-law and experienced all the excitement of my brother getting married this fall