Searching for that Light at the End of the Tunnel
Hi everyone. Sorry that I have not written in a week.
I will try to write more often but no promises given how challenging the days have been. Perhaps I will just get comfortable writing much briefer blog entries so that way I am not as intimidated by writing.
The last week has been tough to say the least.
I started on the 2nd drug of the Phase 1 Trial this past Tuesday. The first few days were fairly challenging in terms of side effects (heavy nausea, strong reactions to food smells) but by Friday, I felt like some of those symptoms I had under control.
My abdominal area has expanded to about 35 inches so I look about 7 months pregnant. I haven't been able to get out much due to the pain but I am thankful that no one has made comments yet such as
- Congratulations, when are you due?
- Do you have a name picked out? or the worst possible comment I can imagine
- I thought you were sick...how great you were able to get pregnant!
A lot of the pain comes simply from the fact that my skin is being stretched so tightly across my belly and back. In addition to the tumors, I am retaining a lot of water weight so my lower back has a ton of pressure on it as well. I tend to get tumor fevers every early evening. They last for a few hours and need to be brought down by Tylenol. I asked my Dr. why is this so much more painful that what I imagine a pregnancy would be and he said, "When you're pregnant, your fetus lives in a womb, your tumor is not adhering to a specific compartment of your body, therefore it is twisting and pulling on a variety of organs in that general area (colon, bladder etc).
I share this because any type of light-hearted analogy to my being pregnant right now or someone understanding because they had a "tough pregnancy" will not be appreciated at all. Thanks for understanding.
The hardest part of the last week has been accepting that pain can often be very unpredictable. I have tried to proactively manage my pain but there are still some hours that seem to take years to pass. When you wake up in the middle of the night and your pain is "9" out of "10", it takes a few hours to get back to bearable. So, this past week and even more so this coming week is dedicated to working on my pain medication plan and making sure that I feel confident that I have the "tools" I need to get through every day.
As I told my family and Dr. Maki, right now I can't see past my pain to even think about whether the treatment is working or not. It is very hard to be positive and optimistic about the days ahead when you don't feel like you have the pain under control. I am hoping I can write in a few days and this will be taken care of and I will be in a more positive place.
For those of you who have emailed, texted and called to visit, I am sure you understand that when Dave and I can't even plan one hour ahead of time, it's impossible to commit to visits. Although they do put a smile on my face, I don't need to see you to know you care about me. Any type of contact or communication will have to be at a very "last minute" basis and hopefully everyone understands this.
The highlight of this week has been receiving my zero gravity chair. I am very obsessed with this chair and it could not have come at a better time. The chair is inspired by the Neutral Body Posture studied by NASA during the SkyLab program. The recliner places the body in a virtually weightless position. In this physician-recommended posture, the spine, hip, and knee joints are on or close to the balanced midpoint of the muscles. This results in natural relaxation and minimum muscle tension. The zero gravity chair gives your neck and back a much-needed breather and allows the body to restore its natural balance. The power recline will bring you into a weightless and relaxing position in under 15 seconds.
Since sleeping comfortably in a bed is impossible these days because I can't lie on my back or my sides, I have been sleeping in the chair at night and it has been amazing. I included a picture of me with it here so you can see my new Best Friend!
Lastly, no matter how bad of a night I have or how long the days look ahead, visiting the Cycle for Survival website and seeing all of the activity makes me forget momentarily all that is going on in my life. To date, we have over 200 teams signed up. THANK YOU for those of you who have followed our wishes and jumped right on board. If you get disappointed because I can't see you, just spend the time we would have spent together recruiting a team or telling someone about the event and how much progress we have made on the medical front.
Because people liked my motivational playlist last week, I decided to "gift" you with another list of physical/mental toughness songs. Since unfortunately exercising is not in my immediate future, PLEASE work out with me in mind. And when you get zonked and sweaty and want to give up, realize how wonderful it is that you have the ability to choose whether you work out or not. What I would give for a great spin class right now. One day soon I am sure...as soon as we find that Light at the End of the Tunnel.
Think strong thoughts of pain-free healing this week! Much Love, Jen (and Dave)
"Tough" Songs - Playlist #2
- Brave – Jennifer Lopez
- Wake Me Up Inside – Evanesence
- London Rain – Heather Nova
- Shake It – Metro Station
- Unwritten – Natasha Bedingfield
- Defying Gravity – Idina Menzel
- Some Day – Rob Thomas
- Lose Yourself – Eminem
- Chances Are – Five for Fighting
- Love’s Divine (The Passengerz Mix) – Seal
- Jump – Van Halen
- I Run For Life – Melissa Etheridge
- Keep the Wheels Turning (Cycle for Survival Theme Song) – Marlowe Stone
- Bigger than My Body – John Mayer
- Rain – Madonna
- Mama Said Knock You Out – LL Cool J
- The Pleasure Principle – Janet Jackson Specific
Songs that I have been Singing to My Tumor Directly
- Hurt So Good - John Cougar Mellencamp
- Goodbye to You – Scandal
- I Look So Good Without You –Jessie James
- Disco Inferno (Burn, Baby Burn!) – The Trammps