Brownie Cookie Day got me an upgrade out of the room of darkness

Thanks to all my bakers! Want you to know the treats got me out of the room of darkness, provided hope to nurses and patients, and made me realize that my stability is not so bad. Besides the hot Weds with horrible traffic including 4 accidents on the 405, we managed to get to UCLA  not too late. I was armed with an overload of cookies, brownies of all sizes, and other treats. It seemed like a lot. If you could see the smiles I get from delivery, you could see the importance of how a cookie changes lives and attitudes. The first area was packed and filled with anxious faces wondering about my delivery, so it must have stopped them from their thoughts of fear and the word of cancer. The infusion area was very very quiet. I met a patient who commented that she always sees me here and she complained that most of the people she knew were “gone” and she expressed her frustration of continuing her treatments. I didn’t add my own saga, but listened. She told me she had driven from San Diego. Yikes and we were complaining about our drive. She slumped in the chair awaiting her turn. I continued my happy face talk with discussion about brownies for 10 minutes. I also asked about the new employee who looked like he was Alex’s age. My nerves caused me to say anything to get a laugh. I was called by my favorite first nurse who quickly took me along with the office manager who also escorted us to a private room. These rooms are usually filled with the “famous” who often have an entourage and body guards. This all proves that you can’t get chemo at home.  This possibly proves that over 4 years of treatment gets you an upgrade if available. What I didn’t know until my first bathroom visit was that my team of nurses were helping me to avoid the room of darkness. I am not talking about the light from the windows, but each chair/pod was filled with faces of gray, skeletons, hopeless, and looking like their days were numbered. To offset my nerves, I had more of a bounce in my step combined with my cute outfit compared to the PJs and baldness everywhere. I quickly scanned for a familiar face or an attempt to change the hopeless look to a halfway smile. No success, so I bounced back to my private room. On the way passing the nurses stations, I greeted my team with a smile. When I returned from my bathroom visit, I asked Jim if I ever looked like that. I did have some moments, but I always wore makeup, drew on eyebrows (I continue this process daily), wore hair, and happy outfits. Plus, I always smiled even if in pain. When my nurse returned with my blood counts which were pretty good this time, I said, “what is with all those sick people out there? Did I ever look like that?” She responded that she felt that I never looked like that even when having an allergic reaction. When my doc entered, I asked him the same question and commented that I know I have cancer, but “what’s with the room of darkness?” He smiled. I asked him if I get a discount or commission based on all the referrals I give him. He almost laughed again. I know he along with all the nurses are concerned with my symptoms, but I reassured him that as long as the horrible constant pain was not there, I was good to go. We talked about upcoming trials, ASCO meeting in 2 weeks, and more ideas with undetermined dates of arrival. I must stay the course even if this is a ton of work to keep cancer stable. My tumor marker remains stable, but again it is not higher. We did discuss this combo which is very new way of demethylating agents causing changes in DNA to make drugs work that didn’t work. The next evolution is a new similar drug with immunotherapy to do the same thing. I wondered if it was me who caused this idea or just reassured the idea. The idea needs major funding since trials are expensive and so the story goes. My docs face did bring his frustration back to the other trial which pulled the slots for ovarian. So, I know I have to continue to do what I can to spread awareness and press for pharm to fund more treatments.

His reaction and comments about the lack of advocacy caused me to try another angle of getting the word out. So, I went on twitter (@jtriestm). I am definitely no expert, but found the re-tweeting easy. I also found gyn oncologists, researchers, and many survivors with the desire to get the word out to spread awareness, find new drugs, and express ideas. If any of you are experts, just email me some tips because I have little time or especially focus. I did see that many onc docs use twitter to chat with each other, so I follow them in hopes of seeing some news which is not yet newsworthy, but may give us more ideas for treatments. I did participate in a chat with these docs, patients, organizations for cancer research on parenting with cancer. Some of the comments were pretty accurate like parenting is already difficult enough without having a chronic illness. I had to add my tweet about the importance of getting your child’s school involved both teachers, principal, office staff, and counselors. As Alex says always, “without the school’s help, his school life would be a lot worse.” Thanks again goes to the teachers, staff, and principals! It is also interesting to note that many immunologists are on twitter too sharing their medical speak with others across the world. Again, one more way to find answers. Plus, the big ASCO14 conference is coming in 2 weeks to Chicago where the oncologists/pharm talk about upcoming treatments, success/failures in trials, etc…you can follow them on twitter #ASCO14 which leads you to more people and tweets and so on. The only message board I follow is http://www.inspire.com/groups/ovarian-cancer-national-alliance/ but Inspire has other message boards for other illness. (@OCNA) The message board is difficult because each and every day, Ovarian wins, a patient loses. I usually scan for questions I can answer and post a response. There are families, parents, children, patients from all over the world. I am still a scanner and now without a lot of focus, but I do what I can do.
Back to my appreciation to all my bakers and supporters, without your help I could have been in the room of darkness. Surrounded by that for 5 hours does impact your attitude even if you try really hard. So, I hope you see how far a cookie goes to help a cancer patient. It isn’t just a cookie. Without my giant team of cheerleaders, a stable test result could turn into a cry for something better for that day. Instead, I am reminded that the room of darkness is a possibility and to be thankful for all my sunshine. So, I continue my day of fog, tweeting, and skimming. Having found my sunshine yesterday of a cookie and brownie, I know I will find it today again. I hope you find yours. From my tweet from yesterday, “Let it GO! Don’t sweat the small stuff, prioritize what is important for the day, for the moment, there is much unknown, so try acceptance.”
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