Cancer survival guide

This by no means an exhaustive list,  I thought that it might be helpful to share some of what I have found to be helpful, and things I wished I knew in the beginning:

• Symptoms not to ignore: I felt like my brain was moving a few times, but I had no other symptoms, so I ignored it. It turns our my brain was moving. The tumor was making the left and right sides of my brain move further apart, which was that caused my seizure.
• I had foggy thinking, I couldn't concentrate I would forget what I was doing  while doing it. I mentioned this to my primary who said it was because I was over 40 and normal. I regret not pushing for imaging.
• I had unexplained numbness in my arms. My primary said a pinched nerve with no follow up, another missed opportunity to find something.
• One night I woke in the middle of the night in a panic thinking I was going to die in my sleep. I think that was my brain trying to signal to me that something is wrong, but I had no symptoms and ignored it.
• For some reason I started thinking constantly about that John Travolta film where he has a brain tumor .. I think my brain was again trying to signal to me that something was wrong, but I ignored it. 
• 2 years prior to diagnosis I had my one and only migraine. When I had the seizure it started very similar, so I wonder if the migraine was the first sign of tumor growth.

• Another missed clue was that my cousin's son  was diagnosed with benign oligodendroglioma after a seizure. He was 13 at the timed thankfully it was benign. He is 21 now and has been released from his Neurologist with no surgery or treatment, no growth  nothing malignant (Praise God!). His story inspires me. If you look at the survival rate for oligodendroglioma, it isn't good and is projected to grow more aggressive, but not for my cousin's son and countless others. Cling to hope!

• Had I thought of all these things together as a collection of symptoms and considered family history, I may have pushed my primary for imaging.
• Before my dog Rosie passed away, she started intensely sniffing my head in the spot where the tumor was, I mean really digging in with her nose. I now know that some dogs have an I Inate ability to smell cancer before it shows up on scans. In fact I later met DR. Shannon who is a vet. Her brain tumor was found this way. It prompted her to immediately get a brain scan. She says it saved her life, I believe so too. My BFF is in breast cancer groups where many people say their cats would kneed their breast before being diagnosed.

Once diagnosed

• Go down this checklist: https://virtualtrials.com/Checklist_for_the_Newly_Diagnosed_treatments.cfm
• Buy yourself an n95 mask with filters for everyone in your household. Wear them during flu season whenever you leave the house. Especially wear them when blood levels crash every time and you leave the house. We don't know at this point if COVID will be one and done or come back, so this is another reason to have one on hand (At risk people are encouraged to have them). 
• Where you start matters. Its important to get the best possible care, and for people in remote areas, that may mean tele medical visits at a major regional cancer center following their treatment orders at a local cancer center. Also the American Cancer Society has free lodging near major cancer centers so you can do your intensive first 6 weeks of treatment  at a major cancer center and then do maintenance treatment locally: https://www.cancer.org/treatment/support-programs-and-services/patient-lodging.html
• Don’t go through it alone! We were made for community, and you will need a community to get through it. If you have cultivated a life in community you will be overwhelmed by who comes forward to support you. If you don’t have a community, there is no time like the present to start building one:

- Search for Facebook groups for your specific diagnosis. If there are none, start one. For GBM. Join the GBM specific groups--

Glioblastoma Survivors to Thrivers group  (my primary group)

Brain Tumor Talk

Survival Guide to GBM

Novocure Optune support for GBM

GBM Cannabis oil group

Brain Tumor traveller's network

Start a closed FB group for your closest friends and family to help keep them informed.

• Seek out a faith community, specifically one that places a high value on community. These churches will have life/cell/home/kinship/community groups (They go by many names). Commit to a group. That means staying when you disagree with others, responding in compassion when you don’t feel like it, listening to understand. I attend a Vineyard church, you can find one near you at vineyardUSA.org
• Accept help, and even seek it. Ask a friend to set up a mealtrain.com for you. People can use it to bring meals or send gift cards. This will be critical during treatment. And it’s a way for friends and family who are far from you to support you.
• Let someone start a GofuNdme for you. I regret not accepting this help. I have good insurance and short term disability. I figured I would wait until I knew if I need it. Well, 6 months later, short term disability depleted, more than 21k paid out of pocket so far, and a new calendar year means deductibles still need to be met. Including prescriptions@2k a pop per month. The beginning was the time to let people make donations, when they were motivated by the shock, uncertainty, and desire to help. So much time has passed that i don’t think the motivation to give will be enough to make a dent. So, I am now seeking alternatives. My job has an employee assistance program that I have applied for, a friend runs for an org that provides financial assistance to cancer patients, so I have applied for that as well. The American Cancer society has some resources to apply for financial assistance as well.
• Don't tell me the odds: My neuro surgeon told us not to check survival rates because what we find will be quite old, and not include recent advancements.I think that was the right answer at the start of the fight. It was all so overwhelming to begin with and I needed to focus all my energy on fighting without the burden of discouragement. He did share that there was a 100% chance of occurrence within 20 years.That helped put things into perspective
• -  SKIP THIS SECTION IF YOU DON'T WANT TO HEAR THE ODDS. In an effort to demonstrate why it was so urgent to participate in a clinical trial, my neuro oncologist stated that GBM 4 is considered terminal and patients live 12-18 months on standard of care. The one year survival is 25%, Five year survival rate is 5%. We had already decided to do a clinical trial, so I didn't need to hear this information and it was crushing. It also created undue stress when the trial treatment became toxic and I was dropped from the trial and was put on standard of care. We were panicked and asked what other trials we can do. It was then that she shared that her patients with the longest survival rates only had radiation and temedor (Chemo), most did not have the added benefit I had of the cold virus engineered to seek and destroy cancer. She was much more optimistic at this visit (MRI showed I was cancer free for 4 months at this point). She later told me that recurrence for Methylated patients is most common in the first 1-2 years compared to unmethylated which is 6-12 months.That being said, I have had the pleasure of meeting many long term survivors who far exceeded these expectations.
• SEEK LONG TERM SURVIVORS: In your support groups you will start to hear about long term survivors. friend them on facebook, subscribe to their blogs. They will give you hope. I have met 10 year, 15  year, and 20 year survivors. Their stories will also help us plan for our future and know what to expect.  As I discover survivors with blogs I am adding them to the links section. Click the drop down and you will see them listed above the about me section. More long term survivors found here: https://virtualtrials.com/survive.cfm
• CELEBRATE THE INCHSTONES: our long term survivors give us hope, but it can be discouraging when we are new to the road, or in between major milestones. In your support groups, start a weekly post if they don't already do one. I post Inchstone Sundays where we encourage everyone to share their progress. Post surgery, the first time I poured my own cereal was an inch stone, when I no longer needed a shower chair was another inchstone. when I ditched the walker, etc. All those inches add up to miles, like when I applied to get driving privileges reinstated, when I returned to work, 6 months cancer free MRI. Share the miles, and celebrate the inches with your groups so everyone can encourage each other, and celebrate together.Celebrate the Milestones too, every one including birthdays and anniversaries.

• Don't compare yourself to others. Some people only get to fight a few monhs to survive and thrive while others get decades to survive and thrive. I think there are many factors that contribute: methylation, % methylation, if the tumor was totally removed, or had tendrils that remain. If you do a trial or standard of care, if you can tolerate higher doses without toxicity. Use of supplements, diet. Everyone’s situation is different.

• 
  Though a positive outlook helps with quality of life, and desire to keep fighting, it is not a cure for cancer (even though you will find many on your support groups who believe that to be the case.) So if you are struggling to stay positive, don’t beat yourself up about it, we all slip into that place from time to time.
• Learn to live in the tension between planning for the worst while still living life for the future. This will be a life long struggle that gets easier with time.
• Plan for the worst. Everyone, regardless if you have a diagnosis or not should have a will, living will, power of attorney, healthcare proxy, guardianship plans for children. Ask friends for recommendations for a good estate planning attorney who can help you with this.

• Just because you have a plan in place, this doesn't mean you are giving up. It takes great courage to plan for the worst while still fighting for your life. Don't believe any lie that tells you otherwise.
• Don’t stop planning trips, vacations, and quality family time.
• if at any time you feel that you are not getting the best care, are not being given the best treatment options, or your DR says they can’t do anything more, then get a second opinion ASAP. Don’t wait. Penn Medicine in Philadelphia does free second opinions via telemedical. https://www.newswise.com/articles/penn-medicine-telemedicine-pilots-second-opinions-to-brain-tumor-patients. I am sure other major regional hospitals do as well.
• What questions should I ask at my consult appointments? Here is a very thorough guide and question sheet: https://virtualtrials.com/index.cfm

I will probably update this as I think of more recommendations. Please leave your comments below if you can think of others