Phase 1: Cancer Resources and Personal Experience
|Posted by Molly Daniels on August 27, 2013 at 11:30 AM|
I was diagnosed with AML (Leukemia, blood cancer) in late September 2012, and through my treatment and the sincere help of my community and family, I have (despite statistics) been in remission since October 2012, completing my treatment in March of 2013. Since then, I've had the chance to speak with many people who are facing cancer in themselves or someone they know and love, and who've asked me "What worked for you?"
Therefore, I'd like to offer you this guide of "What worked for me," with, of course, the understanding that this is simply one person's experience, and not intended at all to be comprehensive or perceived as medical advice.
I wish you and your loved ones swift recovery, and hope we continue to add to the number of survivors, and thrivers.
What to Keep in Mind Throughout the Process:
- Doctors are not gods. Although this is likely the scariest thing you have and will ever go through, and it is easy to simply say, Yes, whatever you say doctor (particularly at the beginning), Doctors are not gods. I found it imminently helpful to get as much information as possible about my treatment, side effects, and alternatives.
- Example: During my "induction" round of chemo, my esophagus developed an ulceration which made it nearly impossible to eat or swallow anything. One of my doctors thought it was a particular bacteria causing this, and wanted to use an aggressive drug to fight it. Several other specialists disagreed with his assumption, and considering the side-effects of the drug he wanted to use, I wanted to wait for a definitive result from the test we were running. We were going to have an answer in 24 hours, hold your horses on the drug that will slam my already-painful kidneys and liver. ~ End result? Tests showed it was NOT that bacteria, and my esophagus eventually healed on its own. Doctors are not gods.
- Get organized. Between the Greek the doctors are speaking (quickly) to the internet searches you and your family are doing, you are going to be overwhelmed with information. My solution to this was to keep a notebook meant only to record what the doctors said: the medications I was getting, the "cell counts" from that day, the treatment protocol. In addition, as the chemo took effect (foggy "chemo brain" and fatigue), combined with my own anxiety, I found it hard to absorb all of what was said. Therefore, I asked a friend to come sit with me each morning when my doctor made his/her rounds, to write down what was said, and also to help ask clarifying questions. Often, we would brainstorm questions before the doctor arrived in order to be prepared when they did.
- The doctors are BUSY. They have many patients to get to, and YOU ARE ONE OF THEM. Take what time you need, ask whatever questions you want, express your concerns. It is vital (literally) for you to advocate for yourself.
- Identify and speak with the assigned Social Worker. In my situation, there was a social worker assigned to the floor I was on. I wish I had known earlier that she existed, because she was instrumental in helping me navigate the disability claims, applying for "Medical Financial Assistance" with the hospital, and also, to be a compassionate ear to listen.
- Assemble your care team. Almost immediately after I was diagnosed, a friend helped to set up an online resource to disseminate information about my status and progress, and it also provided a calendar where people could sign up to bring me food, or to do laundry for me, etc. I ended up using mylifeline.org, but I've heard good things about lotsahelpinghands.org
- As I was diagnosed in the ER and immediate arranged to be sent upstairs to begin chemo, I contacted my family and two close friends. I told one of these to come take my keys to feed my cat, and the other to post to Facebook where I was and what I knew. This is not everyone's choice or style; but as my family lives on the opposite coast, and my community is strong as diamonds, I knew I needed and wanted their support.
Things you'll want for your inpatient stays:
- For my "induction" phase, and each of my 4 subsequent "consolidated" chemo rounds, I was in the hospital for 1 month and about a week, respectively.
- If you get sick, you stay longer, if you seem healthy enough after consolidated rounds, ASK TO GO HOME!
- SO, you're going to be in the hospital for about 3 weeks. What did I want?
- A warm blanket and my own hand towel: THe hospital blankets are typically long worn out; have a friend bring or buy you something fuzzy, warm, and comforting. The towels are usually the same, and having my own hand-towel from home helped my bathroom feel less institutional.
- Street Clothing: I did not learn until later chemo rounds that, as long as your clothing allows for "port" access and blood pressure access, you can wear whatever you want. (Once I began to wear my own jeans and sweaters, I began the process of not feeling like a "patient" or helpless, which was VERY important to me throughout my treatment.)
- Starbucks instant coffee: although I couldn't drink this on several occassions, when I could, good LORD, was it better than the hospital's coffee!
- Scotch Tape: for all the cards and well-wishes you will receive. Again, this helps to personalize the room and combat the institutional blue walls.
- A music player: Hospitals are notoriously cheerless and music-less places. Having a clock-radio or iPod stereo provided me the sounds of something other than the beeping of the machines, and reminded me that there is joy in the world. (I was in the hospital during Christmas season, and played the 24/7 Christmas music station!)
- Ear plugs and eye mask: It's been said that the hospital is the worst place for a sick person. Therefore, ear plugs and an eye mask helped me to get the rest I needed, or as much as I could.
- Additional things I brought as I learned:
- Art supplies
- File sorter for documents and doctor releases, etc.
- Phone charger
- Soothing room spray (chamomile/lavendar)
- My own pillow
- Books (Chemo makes reading/concentration is difficult; "mind-puzzles" are not your friend. Keep the word-cross and sudoku at home)
- My computer, which plays videos (I subscribed to Netflix for the first time during my treatment; it was a god-send)
- My own herbal tea
- ORGAIN!!!!! This organic protein drink was my savior. (If you're unable to eat, the hospital will provide Boost or Ensure -- these are made of oil and not much else.) You can find it at Whole Foods.
- Lots of underwear and/or underwear liners. Truth is, chemo messes up your stomach (all "fast-growing" cells, like cancer, but also like taste-buds, hair, and stomach lining, are attacked); this can cause messes you haven't made since your toddler-years. Don't worry, you have cancer; this is the least of your problems!
- I brought in a friend to shear my hair short after the first few weeks, when it began to fall out. It helped ease the transition. Most people lose their hair. I kept my eyelashes and eye-brows, but they did thin out. Good news? Your leg and "other" hair thins out too - so less shaving time!
That's all the time we have for today, folks (I'm sure I'll add more). Next time, I will offer what other actions and outside resources worked for me, but here are the few off the top:
- Suleika Jaouad's Wellness Blog on the NYTimes site (AML patient with a sense of humor; i.e. "Cancer is Boring" and "Cancer is Awkward"): http://well.blogs.nytimes.com/author/suleika-jaouad/
- Cancercare.org (free therapy sessions for cancer patients AND their families)
- Leukemia and Lymphoma society (limited financial assistance, information booklets, one-to-one pairing with a cancer survivor of your age, demographic, and diagnosis and treatment)
- American Cancer Society (information and a handy-dandy file organizer with typical questions to ask and information prompts to keep)
With Love and Light,