Appendix Cancer Survivor's Blog

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.

The Appendix Cancer Support Group Will Meet Regularly!!

Hello Everyone!

We just finished our first Appendix Cancer Support Group via Zoom, and it went great! We could see and speak with others dealing with appendix cancer. This was the first support group meeting, and there were three of us (and our husbands!). One from Ohio and one from Hungary and myself, so it was an international support group!

We all decided we want to continue to meet, for now we decided we want to meet monthly. For the next meetings the preference was a weekday and not weekend. We’d thought about doing an evening meeting, but since we are international and Hungary is about 6 hours later than Central time, we decided to meet Tuesday June 2, 2020 at 11AM Central time. I will again post the invitation and link to the support group on my blog.

We will discuss at out next meeting if we want to have a regular date and time after we see how many attend and what time constraints are.

For now I will post invitations on my blog. If we continue to have regular meetings, my web designer will make the support group an addition to my website. My web site designer suggested maybe down the road, I send email invites instead of posting the invite on my blog in case we get someone who tries to “crash” the meetings, but I think that’s a wait and see thing. For now I will post the links to the group on my blog.

I would love to hear from anyone re: you feelings about the support group. You can leave a comment here or email me at Carolyn@appendix-cancer.org. I think it will be a great thing!!!

Take care and stay safe!

Carolyn

Support Group Emergency!!! New login link!!!

Hi All! Had a glitch with my login link, so try this new one!

Carolyn Langlie-Lesnik is inviting you to a scheduled Zoom meeting.

Topic: Appendix Cancer Support Goup
Time: May 9, 2020 10:00 AM Eastern Time (US and Canada)

Join Zoom Meeting
https://ivytech.zoom.us/j/95311881663

Meeting ID: 953 1188 1663
One tap mobile
+13017158592,,95311881663# US (Germantown)
+13126266799,,95311881663# US (Chicago)

Dial by your location
+1 301 715 8592 US (Germantown)
+1 312 626 6799 US (Chicago)
+1 929 436 2866 US (New York)
+1 253 215 8782 US (Tacoma)
+1 346 248 7799 US (Houston)
+1 669 900 6833 US (San Jose)
Meeting ID: 953 1188 1663
Find your local number: https://ivytech.zoom.us/u/ac5OzeAyFM

Saturday Zoom Support Group Invitation

Hi!   This is the invitation for this Saturdays support group at 10AM Central time.  At the time of the meeting just click the link.  You can join the meeting audio either with your computer cell phone, just call one of the phone numbers to participate via your cell or home phone.

Look forward to meeting you!

Carolyn

Saturday Zoom Support Group Invitation
by Carolyn Langlie-Lesnik
Hi! This is the invitation for this Saturdays support group at 10AM Central time. At the time of the meeting just click the link. You can join the meeting audio either with your computer cell phone, just call one of the phone numbers to participate via your cell or home phone.

Look forward to meeting you!

Carolyn

Carolyn Langlie-Lesnik is inviting you to a scheduled Zoom meeting.

Topic: Appendix Cancer Support Group
Time: May 9, 2020 10:00 AM Central Time (US and Canada)

Join Zoom Meeting
https://ivytech.zoom.us/j/93927801460

Meeting ID: 939 2780 1460
One tap mobile
+19294362866,,93927801460# US (New York)
+13017158592,,93927801460# US (Germantown)

Dial by your location
+1 929 436 2866 US (New York)
+1 301 715 8592 US (Germantown)
+1 312 626 6799 US (Chicago)
+1 669 900 6833 US (San Jose)
+1 253 215 8782 US (Tacoma)
+1 346 248 7799 US (Houston)
Meeting ID: 939 2780 1460
Find your local number: https://ivytech.zoom.us/u/ac5Vlmp0Pi

Carolyn Langlie-Lesnik | May 6, 2020 at 2:50 pm | URL: https://wp.me/p91aTz-sr

J

Online Support Group This Saturday!!!!!

Hi Everyone!

Something new and wonderful! For those of you who would like to meet me and discuss the challenges and rewards of being diagnosed with this cancer, I am hosting a first time support group via an online Zoom meeting. Zoom is a lot like Facetime or Skype. I will post a link here, and at the time of the meeting (10:00AM this Saturday) you just need to click the link I am posting. It will ask you to open Zoom and when you click that link, the Zoom software will open and if you have a camcorder on your computer we will be able to see each other and if you have a microphone we will be able to talk to each other. Chat is also available on Zoom meetings.

I will post an invitation with the link here, hopefully by tonight. I talked to my web designer yesterday, and if this is something we want to do, it will be made part of my website, and in the end I will send invitations to those who want to participate via email. Doing the invites down the road will help keep anyone from “crashing” the support group, I get a lot of spam email and spam blog comments now.

Check back later for the link to our group, and looking forward to “meeting” you! Just got to thinking, the pic of myself posted on this site is pretty old, it’s from when I first founded this organization! I am older and heavier now, I need to update that photo with an honest one!

Hope to meet you soon, and hope to make this a permanent and ongoing group, we all need it!

Zoom

I’m doing a second post in a day, be cause I want to focus on one thing, ZOOM!  I’d mentioned maybe we could all get together “real time” on a Zoom video.  It would be kind of like Skype.

I am a professor and with the virus in our midst now, I am teaching online.  My classes meet Tuesdays and Thursdays on Zoom.  I create a Zoom link for my students and we all meet at 9AM.  We can all converse and see each other (if we have a built in Camcorder and microphone).  It’s okay if they come in a little bit late and leave a bit early.

It’s actually pretty great, and I feel like I can get to know my students.  I see them on the couch holding their dog, see their kids in the background (no one is in school now).   We can all drink coffee together!

I think, lacking support groups anywhere for this cancer, it would be great if we could all meet on Zoom every week or so?  Someone, Erica, left me a comment after my last post asking if we could do it May first…. but I just read her comment today.  She lives in Hungary. 

You know, we could have an international support group! I’d asked Erica if we could meet this Saturday at 4PM Central Time. If she says yes, or if any of you do, I’ll post a Zoom link for us. Anyone have a better date or time for a weekly meeting? Let me know!

You can email me at Carolyn@Appendix-cancer.com or leave a comment here. I’d really like to get to know you!

Uncertainty

I told you I would think of ways my cancer affected me.  Uncertainty was what I had the most trouble dealing with after my diagnosis.

My future was uncertain: whether I would be able to raise my kids was uncertain, whether I’d grow old with my husband was uncertain, whether I’d be able to hold my job, or any job was uncertain.  Whether I could go on vacation next year, ever go back to school for my Master’s degree.

The definition of uncertainty in the Merriam-Webster dictionary includes: “an almost complete lack of conviction or knowledge about an outcome or result”.   The outcome or result being my life.

Not just would I die soon, but whether I could we go on living certain of anything.  Could I plan a future?  When I thought about it, most of our lives are based on future plans.  We plan where we want to work someday, where we want to go with our children, watching our children grow up, attending our sister’s, daughter’s, or friends upcoming wedding.  The family reunion next summer.  Where we would love to go on vacation.  What we want to do with our off and personal days.   How we want to celebrate family member’s birthday or our own anniversary.

I was so upset at people who told me I was lucky, because they were sure I lived one day at a time.   I did for a long time live one day at a time because my future was so uncertain,  No, it was not a good way to live, not contemplating a tomorrow.  It is a very difficult way to live.

And then when I finished treatment, the surgeries and long months of chemo, people cheered for me.  I was done, I’d beat it, I was a survivor and could get back to my normal life!   Everyone assumed I would “get back to normal”, but normal was gone.

I wanted to stay on chemo, it was the only tool I had to fight the disease and I tolerated it pretty well.  After chemo, the uncertainty really began.  Would my cancer come back?  When?  I had scans every 3 and then 6 months, all to see if it had come back yet.  Even annual scans were hard.  It was life in limbo, unsure still if I had a future or not.  After I finished chemo I could not say the words “next year”.

I read a book that so helped me, because someone actually understood how I felt.  It was written by two cancer survivors.  The book is “Dancing in Limbo: Making Sense of Life After Cancer” by two cancer survivors, Glenna Halvorson-Boyd and Lisa K. Hunter.  They knew exactly how I felt.  I recommend reading it, you won’t feel so alone.  I know I felt very alone after cancer treatment ended.

I now can plan for next year, I can plan future events.  But I think after cancer, though I plan a future, I am aware that we can never be really certain of a future.

There is a church in Chicago that intrigues me, but I’ve never been, it’s an hour and a half drive.  The LaSalle Street Church.  My favorite Christian author, Philip Yancy, wrote of the church and said it was in Chicago halfway between two neighborhoods, one of the richest and one of the poorest.  It was his favorite church.  He lives in Colorado I believe, but still attends occasionally.  The homeless poor could sleep on pews in the sanctuary.  The wealthy could contribute to the poor.  Christianity really took place there.

I don’t actually attend a church (I’m kind of in church when I’m in the woods and see God everywhere), but I have faith and love to listen to good online sermons.  The above church had a sermon this week I want to listen to about “The Idol of Certainty”.   Certainty and and the lack of  certainty impacted me so greatly for so many years.  Can you idolize certainty?  Did I?

Hmmm…everything is online so I will give a listen to it.

 

Coming Back

I’m sorry I’ve been gone so long.  Used to be I started my New Years Resolutions on May 1st, as that’s when I felt spring officially started and for me that felt like a time of new beginnings.  So I’m looking forward to May 1st, and maintaining this site and writing more often will be my New Years Resolution this year (one of them, I have a few more that I think I’ll officially start on May 1st!).

I’m in a different place than most of you, a place I hope where most of you will join me.  I will be a 19 year cancer-free survivor of signet ring appendiceal cancer next month.  Next year will be 20 years…wow!

I now no longer fear cancer recurring…I did for many years after my diagnosis and treatment.   I feared it for at least 8 years, maybe more.   When I got to 8 or 9 years, I stopped getting the CT scans every year, I gave up the “scanxiety” we all suffer from when we get scans that will reveal if we have a future or not, at least a cancer free future.  I started to worry more about all of the radiation from my CT scans causing new cancers.  Really, it was a lot of radiation.  I got scans every 3 months at first, then every 6, then yearly.  Most were with and without contrast of the chest, abdomen and pelvis.  At some time they didn’t do the chest anymore, but still a lot of radiation.   I’d thought that initally I was told if it recurred, it would most likely recur in 3 years.   I felt just a tad more comfortable at 5 years (remember many years ago if you were cancer free for 5 years after treatment they called you “cured”…no more), but I liked surviving 5 years.   Of course I heard of someone who had a recurrence 13 years after treatment, of course that made me uncomfortable a bit until I passed 15 years.

But now, cancer isn’t foremost in my mind, I don’t think of cancer often or worry about my cancer coming back.  I can plan for the future now (I couldn’t for several years after my diagnosis).

Now I’m older, I just turned 60!   I was 41 when I was diagnosed.  I’ve lived to experience so many things. My kids were in grade school, 10 and 11 years old, when I was diagnosed.  I got to see them graduate grade school, Jr. High, High school and college.  Both are married now, both are independent and have their own lives.   They needed me so much more when I was diagnosed and I was so afraid of abandoning them.

I’m sure though that now I am cancer free and feel cancer free, that their are ways cancer has changed me and changed my perspective and who I am now.  I’m going to start thinking about that and writing about that here.

Are any of you long term survivors?  Are you newly diagnosed?  Where are you in your cancer journey?

Just a thought, and I would love your feedback.  I am a professor at a local community college, and now with COVID (need to write about that too!) I am teaching online.  I interact with my students twice a week on ZOOM.  I can see them and we can converse and hold conversations. Seems everyone is using Zoom nowadays!

Since I’m good at using Zoom nowadays, I would love if I could have online meetings with you, if we could all really talk and communicate, maybe once a month?  Your only have to use your first name, or even no name at all!   My daughters and I aren’t seeing a lot of each other since the virus, so Weds. night my husband and I and both of our daughters and their husbands all had a Zoom meeting with us, a bit like being in the same room!

If we do Zoom, we can set up a date and time and I could post a link here for anyone to access or I could email you the link).

Let me know what you think!!!  I’d love to “meet” you!

Carolyn

 

 

Completing Treatment

I remember completing treatment.  I was diagnosed in 2001, and if I remember right, my last IV chemotherapy treatment was January 22, 2002.   I always went to chemo alone, I drove myself, so decided to take myself out to lunch to celebrate when I was driving home from my last treatment.

But I really didn’t feel like celebrating.  I didn’t feel the joy I thought I should feel when I ate that celebratory lunch.  I just remember feeling I’d lost my tools, I no longer had any way to fight my cancer, to keep it from coming back.  From now on I’d just be waiting to find out if a single cancer cell escaped the peritoneal and IV chemotherapy and would cause my cancer to return.  I actually tolerated chemotherapy well once we knew my side effects and how to prevent them.  Chemo didn’t cause me nausea or make me tired.  I’d never vomited because of the chemo.  I was always able to eat well while on chemo.   I trained for a bicycle century (riding 100 miles in one day) while on chemotherapy.  I would have been happy to stay on chemo for the rest of my life!

Interesting, but everyone else felt I’d made it!  I was done!  I could go back to my before-cancer normal life!   I was cancer free!  They’d supported me through it all, now they could take a break!

But my before-cancer normal life was gone.   I had to learn to live with uncertainty.  I never knew if I would have a future. I’d read my cancer recurred 80% of the time.  I couldn’t make plans for a vacation down the road.  I could only plan my life between CT scans.  If a CT scan was clean, then I could relax and enjoy my life until my next CT scans, every 3 months at first, then every 6 months for several years.   I couldn’t plan vacations, I couldn’t even say the words “next year”.

Things got better when my scans were once a year, but I still lived with uncertainty.  I still suffered “scanxiety” every time I had a CT scan, wondering if my cancer-free life would be over.  Surviving 5 years helped, but not a lot.  I’m old enough to remember when in the past, being cancer-free for 5 years meant you were cured.  No one uses the “cure” word now.  Even though I am currently an 18 year survivor, I am still not cured, just in “long term remission”.

Against medical advice, I quit getting CT scans and seeing an oncologist at about 10 years after my surgery.  That gave me peace, helped me move forward, helped the uncertainty fade.

I know many will feel your struggle is over once your finish treatment, but in some ways, the struggle is just beginning when treatment is over.   We need as much, maybe even more support, when we are no longer being treated for cancer.

The Life After

When I was diagnosed with cancer, I was not given much hope.  I was at one point told I was terminally ill, that I would not live.  Even once I found treatment, I read about the odds of survival for signet ring cancer, none of the statistics were encouraging.  I read that even with treatment, my cancer was 80% likely to recur within the first three years, so I did think a lot about dying and tried to prepare myself for that.  One of the people who helped me most in my cancer journey was a friend who listened to me talk and cry about how I felt about dying, what I would leave and what I would leave undone.  She didn’t tell me that I would be fine or that I should think positive, she just listened and understood.  She also knew I might die.

When I contemplated dying I read MANY books (I’m a reader) about people who had had near death experiences.  I read many books about the afterlife.  I am truly convinced there is a heaven and that’s where I will go.  And I don’t think I will be sitting on a cloud playing a harp.  I believe I will have a real body like I have now, but one with no illnesses, one that is strong and healthy and young.  I believe I will be able to eat great food!  There are so many references to heavenly feasts in the Bible, and when Christ was resurrected and came back, he ate food with his disciples in his new body, we will too.  I believe I will be busy with things I love to do and will never be bored!  I look forward to heaven.

I could give you a big list of books I’ve read, but one of my favorites was “In Light of Eternity”.

I recommended that book to a friend who lost her young daughter, she said it really helped her.

Think of reading some books like these (or audiobooks if you don’t read!).  I think they will help you.   Even if we don’t die of our cancer, we still will someday, and it feels good to be prepared!

Successful Treatment for Appendix Cancer

I’ve had two recent comments from people diagnosed with appendix cancer.  It sounds like neither were being treated by a specialist.  It sounded like they were being treated as though they had colon cancer.  This treatment is not appropriate for appendix cancer.

Just receiving IV chemo only, even after bowel surgery, will not cure this cancer.  IV chemo may shrink tumors and slow their growth, but it will not rid your body of the cancer.   If you only receive chemo therapy, you will probably die of this cancer, though you may buy yourself some time.  One specialist told me 100% of the patient he knew who had only received chemotherapy had died.

This cancer spreads small cancerous tumors into the abdomen.  These tumors need to ALL be removed during a surgery called cytoreduction surgery that is done by an appendix cancer specialist, not just a surgeon who does cancer surgeries.

Chemotherapy needs to be put directly into your abdomen, a procedure called HIPEC.   The chemotherapy comes into contact with and kills any microscopic cancer cells that can’t be seen following the cytoreduction surgery.  If these microscopic cells remain, they will cause the cancer to recur.  The chemotherapy in the abdomen cannot kill cancerous tumors that can be seen by the eye, only microscopic cells.

I have information about cytoreduction surgery and HIPEC on my website.

You may receive IV chemo after the cytoreduction surgery and HIPEC, but I was told that chemo was to prevent me from having the cancer spread outside of my abdomen if any cells escaped during surgery.  I was told that that chemo would not kill tumors remaining inside my abdomen.

Treatment for appendix cancer requires treatment by an appendix cancer specialist.  Many famous hospitals and medical centers do not treat appendix cancer well.  There are not many appendix cancer specialists in the United States, so most likely you will have to travel.  There is not even a specialist in every state.

If you look at my Physicians and Facilities pages, you can find specialists who treat appendix cancer.  I traveled 1600 miles round trip 5 times to see my specialist.  But I am alive 18 years after a famous hospital in a major city told me I would die of my cancer, that I was untreatable.

Please, if you are newly diagnosed, see an appendix cancer specialist ASAP!!!  Even very good surgeons and oncologists are unfamiliar with appendix cancer, you need someone who specializes in the disease.