Welcome to my blog.
I am currently three years in full remission from a very rare cancer (Stage 4 adrenocortical carcinoma or ACC). Since I am both a survivor and a pediatric oncologist I have had many conversations with folks about going through cancer treatment. As an oncologist, I am frequently educating families on their child’s illness to empower them to have the hope and strength to fight and believe in their ability to win! Now because of my own personal experiences with cancer, I have the privilege of talking with lots of people going through cancer treatment. I am starting this blog, since I would like to empower others with my own story. It is a little selfish because I feel good every time I am able to help, even if just a little bit. (Read more about my story in the “About” section www.chemotherapycheerleader.com/about )
Very recently a neighbor of mine was diagnosed with an aggressive leukemia. She had to leave Doha (where I am recently expatriated) and her young kids (while they finished the school year) to be treated back in the US. She is doing great right now! She has gotten through a couple of rounds of chemotherapy and was recently reunited with her kids. I bring her up because she is the inspiration behind this first post. She recently asked me how I coped and managed to stay positive for my almost continuous 1.5 year inpatient battle with ACC.
Here are some of thoughts that I shared with her:
As an oncologist I knew intellectually that I had a very difficult cancer to treat and that there were few to no long-term survivors with my disease who had my degree of spread, but somehow I believed that I would fight and win! Since I have often thought that my clinical job title should be chemotherapy cheerleader, I decided me to be my own cheerleader. Luckily I also had many friends and family to form my “squad.”
My plan was simple. I would fight and be very diligent about making sure my chemotherapy was taken on schedule. Because I had a few therapy options I decided to take the most intensive therapy path because I was relatively young and otherwise healthy. I knew sometimes delays may happen or that I may not tolerate such harsh therapy but I did what I could to keep my chemotherapy on schedule. In the future I will post more on what IS and what IS NOT important in the timing of chemotherapy. I constantly reminded myself that as harsh as the treatment is to my body that it is deadly toxic to cancer cells and cures people like us with cancer everyday! Plus it is mostly short-term pain for a very important long term gain. Although many of these chemotherapy drugs have been around for decades they still work better today because of our knowledge; we know more about how to give them and because there are other medicines that help with the side effects. Easing the side effects not only makes treatment more tolerable but it also helps chemotherapy work more effectively because your body is recovered enough to stay on an intense treatment schedule.
Here are some tips based on how I kept myself feeling better and positive during the very long treatment. Cancer therapy is a marathon not a sprint. These were tailored to my needs and interests but I hope that they can inspire your own list.
I exercised in the hospital. I walked multiple times a day (when allowed) and actually was able to do weight training albeit at a reduced intensity. On days when I could not walk I used exercise bands in bed. I was lucky that I started in good shape. If you are physically weak in the hospital and getting therapy especially inpatient therapy, you can ask your doctor about having a physical therapy consultation. Getting out of bed is important for our bodies to stay strong and infection free. Funny, when I returned to work after finishing treatment I was much tougher on teenagers who refused to get out of bed! I knew better how to distinguish excuses from needing a day in bed. For some folks things like pain keep them in bed. Do not feel bad about using pain medicines, they are important. Not only do they relieve pain but by relieving pain they allow us to do things such as exercise which is important for keeping up strength and staying infection free during chemotherapy.
Celebrate Special Occasions
I had special occasions planned in and outside of the hospital. I lived life. Remember life still happens while you’re on treatment even if not at our “normal” pace. My girlfriends would come for a girl’s night in my hospital room; others would come to play on the wii, watch movies in bed, or dance with me and my IV pole (Pic below is of me and Allen). On my short stints out of the hospital I pursued hobbies. I went to a blues/ fusion dance in California. Yes, this involved being around people although my immunity was low. It is important to have a balance here, to take some precautions to lower the risk of fever and infection but not to live in a bubble so that your mental state worsens. I will write a dedicated post about this issue in the future. The weekend before my liver resection I went on a road trip with 2 friends. The advantage of being the “cancer patient” in the car is that you too may get your friend out of speeding tickets by taking off your scarf and staring into the officer’s eyes. (I actually got my friend out of two tickets in a 10-minute window.) One of my best girlfriends was diagnosed with leukemia a couple of months after I finished therapy. While she was in the hospital we planned a beautiful wedding in the hospital chapel. The wheelchair decorated with wedding bells and ribbons made for a great photo!
Choose Medical Advocates
When possible I only worked with doctors who I felt advocated for me. Early on I had a second opinion at one of the “best” (a.k.a. largest) cancer hospitals in the US. It was awful day as the doctor spent about six minutes with me after repeating all of my tests and told me that her recommendation was for me not to continue treatment and to go to hospice. Here, being an oncologist was an advantage. I understood that I was responding to treatment and that getting palliative treatment was not yet indicated. Plus, I had an excellent oncologist who told me to ignore her opinion; he was my advocate and agreed that continuing treatment was the right path for me.
Although “experts” are certainly important, even more important is having an oncologist who is fighting beside you. If they are not an “expert” in your disease, a great advocate will educate themselves on your disease and consult “experts” if needed. My oncologist often talked to one of the leading “expert” in my disease to guide my treatment strategy. There is nothing better then having a doctor you trust and who is your advocate. As I doctor that is what I strive to be.
Surround Yourself with Beauty
I had my room decorated at all times. Mostly with pictures my friend’s kids drew for me. This helped me feel more at ease and at home in my hospital room. This is something I emulated from my pediatric oncology wards.
I made rituals out of stages. I had a photo shoot when I shaved my head. Yes, we shave our heads (not with a razor!) just as we start to loose hair since it falls out in clumps and is very messy and itchy. You can see one of the portraits of this hair shaving moment, thank you Jane. (www.janemarieblog.com )
I wore more eye make up than usual and bought lots of pretty pjs and fun scarves. I made my self feel pretty. I even decorated my port (a permanent IV catheter nicknamed Portia) bandage with girly stickers. Another part of my daily ritual in the hospital (keeping a schedule in a hospital is a good idea) was to lather up with Cocoa Butter lotion after showering since chemo can dry out your skin. I used a lot of face moisturizer, to stay looking young as chemo can sometimes age your appearance.
I laughed a lot! One of the absurd parts of my treatment was taking oral DDT (similar to the bug repellent). I made jokes that you could rent me out to garden parties as a bug bomb, all I would need to do was to pass gas! I had friends who cooked very yummy and healthy organics dinners for me which most of the time I would promptly vomit. But “organic vomit” is vastly better then just old regular vomit.
Meditate and Visualize
I meditated with every scan and used visualizations often, picturing my tumors being killed. Of course I did NOT use such techniques in place of chemotherapy, but I think the mental focus was good for me.
I had lots of visitors and was very open with everyone. To me not having the burden of keeping things secret was very helpful. The “C word” is not a bad word. I could release my worries and rally support. Also blogging or updating via social media allows for updating a lot of folks at once. I did all my posting on Facebook and not a dedicated medical blogging site. Both have different advantages so choose which ever is right for you. Facebook worked for me since I could just write a line or two in a status update one day and a longer note the next, plus I was already connected with a lot of friends prior to my illness. I got lots encouraging comments, which really kept to me going. A popular dedicated medical blogging site is caringbridge. (www.caringbridge.org )
Having my own pillow from home in the hospital was essential. It seems like a little thing but those scratchy plastic hospital pillows are no good under a bald head.
I allowed people to help me a lot! I would never have gotten through any of it without my army of love made of friends and family who became “Team Jess.” I allowed myself just to focus on staying positive and getting through the treatment. Almost everything in my life was taken care of by someone else. I was very fortunate here. Getting therapy is a full time job so as many of your life obligations that you can delegate to someone else the better. I was also not shy about my needs. I still get teased about sending an email about needing soft bean curd for dinner. Don’t ask, I don’t remember my reasoning. In general people really enjoy being able to help, so let them.
As cancer patients we need to expect and that there will be hard days.
But … when we are being given chemotherapy for the purpose of cure (there are times that chemo is given with other goals such as palliation or pain reduction but I will leave this conversation for another post) it is important to keep our focus on that therapy will eventually be finished and there will be a full life to get back to.
If the goal of therapy is cure, I believe it will happen. When children ask me if they are going to die of their disease for the most part I honestly say that they have a serious disease but we have serious treatment. The therapy might be hard but we can cure it. It is not until the goals change that I really discuss death. Early on I explain that relapse and death do happen, but I focus on cure until there is a reason not to. I will post much more on how to understand what doctors mean when talking about percentages, chances of survival, and life expectancy since I think this is often confusing.
The take-home message is neither YOU nor your loved is a percentage. You are one person, and knowing how you respond to therapy will often come from monitoring your response to therapy. So even if more people die then do not die of your disease, you can find hope that in your case you are one of the ones who will survive … just as I did!
Sending you all strength and love!
By the way my friend who inspired this post is currently searching for a bone marrow donor. If you are relatively healthy and between the ages of 18-44 please consider registering to be a donor. You can find out the details on how to register as a bone marrow donor here: Be The Match at www.marrow.org .
Also need to write a special thank you to Rich (www.richpomerantz.com) for the use of the photo in the header of my website taken of my Aunt and Uncle during her treatment for ovarian cancer.