This Blog Is Dedicated To Those Who, The Moment After Receiving A Cancer Diagnosis, Assume The Identity Of "Cancer Survivor" For The Rest Of Their Natural Lives.
If you are interested, Arizona State University asked me to invite you to participate in a study about a cancer diagnosis and its effect on sleep quality. The link below is to a flyer about the study that will give you information on how to participate:
This study is an 8-week intervention with a 4-week follow-up period. Interested participants complete an eligibility survey to see if they are eligible to participate. If they are, we have them review an online video providing an overview of the study, review an electronic informed consent, and then ask us any questions they might have before signing the consent and being randomly assigned to one of two different groups. Both groups participate in app-based activities for 8 weeks and then complete self-report symptom questionnaires at baseline, week 4, week 8, and week 12 (after a 4-week follow-up).
I attended a presentation of Dr. Michael Holick’s at an annual meeting I attended of the American Association for Cancer Research. Dr. Holick has studied Vitamin D for 30 years. He received the Linus Pauling Award for Health Research in 2009 related to his work (after he was fired from his professorship in dermatology for promoting healthy sun exposure).
His work brought many things to light. Vitamin D is actually not a vitamin but a hormone, a hormone used by every cell in the body. All immune cells have Vitamin D receptors. Vitamin D deficiencies are now being associated with increased cancer risks, with autoimmune diseases like multiple sclerosis, rheumatoid arthritis and lupus and even with depression and psychological disorders.
Many of us living in the United States above Atlanta Georgia are vitamin D deficient, in part because we get so little sun exposure in the winter months. We also have developed a phobia of sun exposure in the warmer months, so use sun block whenever we are outside in the summer, which prevents our bodies from developing our own natural Vitamin D.
It’s interesting that in some cancers are more prominent in the black population, whose skin pigmentation makes it more difficult for them to produce vitamin D when exposed to sun. It’s also interesting that now obesity is seen as a risk for developing cancer, and vitamin D is sequestered in fat cells and not available for use in the body of those who are overweight. Cancer is also a disease associated with aging, and as we get older, our bodies are less able to produce vitamin D from sun exposure. The incidence of many cancers is greater for those who live in the northern United States.
Our bodies naturally produce 20,000 units of vitamin D in just 15 minutes when just our arms and legs are exposed to the sun in the in the warmer months. And there is no toxic effect from naturally produced Vitamin D. It is felt that the current recommendations for vitamin D intake are too low. We can’t obtain enough vitamin D from the foods we eat, so in the absence of sun exposure and without supplementing our vitamin intake, we will likely be deficient. We can obtain enough vitamin D naturally with arms and legs exposed to sun in the summer months for 15 minutes 3 times a week.
As I have a history of cancer and autoimmune disease and live in the northern United States, I personally started taking large doses of vitamin D supplements, and several months after taking supplements asked my doctor to do lab work to see what my vitamin D level was….with supplementation, my vitamin D level was just in the middle of the normal range. I encouraged my sister-in-law, diagnosed with breast cancer, to have her vitamin D level checked, her level was far below normal; her doctor has now put her on a prescription Vitamin D tablets.
Dr. Armando Sardi is on my organization’s Medical Advisory Board. Every year he does a walk, Heat it to Beat It, in Baltimore. I’ve been to at least 5 of them. Last year was the 10th walk. They have raised 1.2 million dollars so far with the walk.
I wanted to go this year, but with Covid, it has now gone virtual. Instead of the nice walk at the Baltimore Zoo, with a meeting of hundreds of survivors after, anyone who signs up can do 5000 steps in whatever way they want (I’d hike at Dunes State Park!).
Since they can’t have the usual in-person events, Dr. Sardi is doing an on-line magic show, his partner is doing a concert, they have several online events! Since everyone cannot get together, they will be doing a Zoom support group, like I am doing with my organization.
I love to attend, but this year I will probably be Virtual! If you look at the attached picture, that is the group picture of survivors who attended last year!
When I had appendix cancer, I did not receive HIPEC treatment, I received EPIC, early post-operative intraperitoneal chemotherapy. When I was searching for treatment, I’d read about HIPEC and wanted HIPEC, but it was hard to find, and I didn’t want my surgeon to be the one I knew of that offered HIPEC. Both EPIC and HIPEC are chemotherapy that is put directly into the abdomen after cytoreduction surgery. You receive several EPIC treatments after surgery vs. the one HIPEC treatment that is done while you are in surgery for the cytoreduction surgery. I’d hoped for HIPEC as I’d read that the heat itself can kill cancer cells, that the heated chemotherapy is more able to penetrate cancer cells, and that the heat also potentiated the chemotherapy, i.e. made it work better. The surgeon I chose, though, use EPIC.
EPIC is sometimes done 4-5 days after the surgery, but I insisted my first treatment be done within 24 hours of my surgery. Scar tissue and adhesions that can interfere with the circulation of abdominal chemotherapy can occur within 4 days after cytoreduction surgery. I had a portacath in my abdomen to infuse the chemotherapy. I’ve read that often the EPIC chemotherapy is drained from the abdomen after a certain number of hours, but we did not drain mine at all, we just let my body absorb the chemotherapy and the solution. I had a total of 6 treatments. Was interesting, I’m a nurse so learned how to do my peritoneal treatment at MSKCC. I only had my first two treatments at MSKCC and the last 4 done with my oncologist at home. As I am a nurse, I had to train my home office how to do the peritoneal treatments, they had never done them before!
EPIC worked for me, I have been cancer free for 19 years. Memorial Sloan Kettering, where I was treated, is doing a study comparing EPIC and HIPEC to see how they compare. The study is ICARuS. You can read of it here. It was started in 2013 and is expected to be completed in September of 2021. MSKCC offers EPIC, but not HIPEC that I am aware of. It will be interesting to see the results of the study.
Some specialists use 5 treatments of EPIC after HIPEC, so they use both EPIC and HIPEC. Studies have been done comparing HIPEC also to HIPEC and EPIC both used. One study I read said the complication rate is higher when both are used, but I haven’t yet read any studies that compare the survival rate of using both HIPEC and EPIC together yet. Most specialists now treating appendix cancer are using HIPEC for the benefits of the heat.
Right now, cytoreductive surgery and HIPEC are the treatment of choice for appendix cancers. Cytoreduction surgery is the removal of ALL visible tumors in the abdomen. HIPEC is Heated IntraPeritoneal Chemotherapy. HIPEC is heated chemotherapy solution that is placed directly into the abdomen, not the IV chemotherapy that is given through a post or a vein.
I don’t know if you’ve heard of the “blood-brain barrier”? Your body protects your brain by not allowing harmful substances to be delivered by the blood into the brain or into the central nervous system. It prevents germs in the blood from being delivered to the brain and also blocks toxic substances from being delivered from the blood to the brain. This can be a problem, because sometimes you might want a toxic substance from the blood to get in the brain, for instance chemotherapy to be able to get to a brain tumor. This can make brain cancer difficult to treat.
There is something similar in the abdomen, the plasma (blood) peritoneal (inside of the abdomen) barrier, the plasma-peritoneal barrier. This barrier also prevents harmful or toxic things in the blood from getting into the abdomen. This make chemotherapy that goes into your blood via a port or vein not very effective against tumors in the abdomen. But just as not much of the chemotherapy from the blood goes into your abdomen, chemotherapy placed directly in the abdomen works better than the IV chemotherapy. Your abdomen gets the full effect of the chemotherapy placed directly in the abdomen as it passes the barrier. Also, the barrier works in reverse, so toxic things in your abdomen don’t go back into your bloodstream. This means you can use chemotherapy in a stronger concentration when it is placed into the abdomen, because not much will get back into the blood stream because of the barrier. I had no side effects from the chemotherapy placed in my abdomen.
This is a good article to read about the plasma-peritoneal barrier and HIPEC:
Sometimes we need to distract ourselves from cancer when we can. From the treatment, the chemo, the lab tests and scans, and maybe even those around us who seem to just focus on our cancer now.
I’ve always found peace (and God!) in nature, when I’m out in the woods. When I look at how nature works, it’s magical.
I wanted the butterfly for our logo as I used to raise monarch butterflies, from eggs! I’m kind of passionate about butterflies!
I’d follow monarchs around at parks or in wooded areas and watch them land on milkweed leaves. Then I’d find one egg it laid the back of a milkweed leave. Here’s a picture (not my pics, from the net!)
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I’d bring the egg home with lots of milkweed leaves, and put it all in a 5 gallon aquarium or very big jar and watch the eggs hatch. I’d watch the caterpillars grow. (I had to get new leaves about every other day.) They shed their skin as they grow larger.
One day, they have a fine piece of silk they secrete and they hang from the end of a branch or twig in the jar, and after awhile, their skins splits open and they just look like a gooey mess. Their head and all of their skin falls off. But a few minutes later, they are a beautiful chrysalis! Below is a time lapse video of the process.
About 10 days after the chrysalis forms, it becomes clear and you can see the butterfly inside. Shortly after it becomes clear, the butterfly emerges.
Watching the life from egg to butterfly was always a very profound for me. Most of the life of the caterpillar is very limited. It only searches for leaves, eats and grows. I has many legs but moves very slowly. When I look at the whole field of flowers and trees, I think of the tiny view of the caterpillar. Just the few milkweed plants in it’s very small circle of life. It really has no freedom, doesn’t really seem to do anything for enjoyment. It loses everything, it dies. It’s head falls off and it’s skin falls off, and it just appears to become a blob of nothing. Does it understand that that is not the end of their life?
But to wait and watch, see the chrysalis form and see the butterfly emerge is amazing. Usually the butterfly will stay in my finger until it’s wings dry, and then it takes off! Now it is free and can travel great distances and see the world from so many different views. It’s is beautiful and it can FLY!! And it flies to beautiful flowers to drink sweet nectar. In the end it travels up to 3000 miles following an instinctual path and it meets up with thousands of other monarchs in Mexico.
It reminds me that in this life we can be very limited, but one day, like the monarchs, we too will will be beautiful and free with an unlimited realm. And we will be able to meet with so many others who have also become free!
I’ve raised enough monarchs I’ve gotten to see every stage of development. It’s amazing to watch!
Hope I didn’t bore you with this, but think of it when you see our butterfly logo!!
I did start a Facebook Support Group on our Facebook page! Hope you will join! I also plan to continue the Virtual Appendix Cancer Support group, more about that later!
The Facebook group is a private group, members will need approval from me to join, I will also moderate the group to make sure nothing offensive to others is posted. The group is for patients and primary care givers. Only members will be able to see each others posts.
I am also planning to have a sign up for the Virtual Support group. You will sign up with your email, and I will email you dates and times the group will meet. I will let you know when the email sign up is available!
Just to let you know, I do have a Facebook account associated with this organization. I’ve actually had it for several years,but as I don’t use Facebook personally, I’ve not used it much for the organization. Don’t laugh, it had been so long since I used it, I forgot the user name and password…tried every email address and password I’d ever used, but could not access my administrator rights. Have you ever tried to communicate with Facebook the company? It’s about impossible. I’d wanted to delete the old page and start a new one I could use for this organization, but I couldn’t delete it either (didn’t have admin access). In the end my web site designer actually got ahold of real people from Facebook, and after I sent them a copy of my passport and all of the Articles of Incorporation and Business Entity reports showing myself as president, Facebook granted me admin rights to the page!! So we are back on Facebook!
I would like to be able to communicate with you. I added a forum to this web site, but that never went over. But almost everyone I know uses Facebook to communicate with the world!! So I am going to start using Facebook also to communicate with all of you. The link is: https://www.facebook.com/AppendixCancerConnection/
I started the virtual support group, which I really love because I can see and talk to you, but do you think we should also have a Facebook support group? We’d be able to answer each others questions and to share what we have learned on our journeys at our convenience. Maybe then the Facebook support group could meet virtually once a month or so? Let me know! I really would like feedback from you. You can email me at carolyn@appendix-cancer.org or text me at 219-776-9913.
One more thing, I was recently interviewed by Cure Magazine for an article they did about appendix cancer. Will post a link to the article when they send it to me!
We had the second Appendix Cancer Support group today, but only one participant beside myself. We did have trouble using GoToMeeting so got a late start. I hope none of you were there and unable to connect? If so, PLEASE let me know! I may go ahead and try to get us a Zoom account, that worked well last time.
I need input from you. How many of you would like to join our support group? It’s a great thing! Please email me at
carolyn@appendix-cancer.org if you would like to be part of the support group, and then maybe I will post a list of dates and times to find the best time for everyone. If you email me, let me know the best time range for you. You can also text me at 219-776-9913.
Thanks for waiting for me to post this, I’ve been camping at a primitive campground for the past week and just got home!
Bear with me, last time we met on Zoom, it’s an online meeting software everyone is using. I have an account via my job at the college. My boss let me use it for our support group last time, but told me I really shouldn’t use the college account for that. I was working on getting my own private Zoom account for my non-profit via Tech Soup, and I paid for it, but never got access, not sure what happened!
I’ve been told many like GoToMeeting better, and I’ve heard it’s hard to have two Zoom accounts on the same computer, so I just got a free trial membership for GoToMeeting and we are using it for the support group tomorrow. I’ve never used it before, so let’s see! I hope everything works out! I am used to using Zoom. Wish us luck! Hope to see you tomorrow!
Here’s the link:
Appendix Cancer Support Group Tue, Jun 2, 2020 11:00 AM – 1:00 PM (CDT)
