My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, October 28, 2010

September 11th

Yikes! I've been promoting several causes lately: SU2C, the Standford Study, Heat It To Beat It. All good things to be sure. SU2C is a grass-roots effort to help all of us to join together to beat cancer, the Stanford study seeks to help us deal with the life-altering changes we experience as survivors, and I am proud of Heat It To Beat it, it's a good chance for us to raise awareness and to collect research funds for our cancer.

But I don't want to only use this blog to promote causes.

We just recently passed the Sept.11th date. That date will always mean so much to me. Have I shared my Sept. 11 story here? Don't know if I have in the past.  But here goes....maybe again?

I was treated in NYC for my cancer, I was there often for awhile. I went for an evaluation, then cytoreduction surgery and peritoneal chemo. After my surgery I went back to NYC for follow-up every three months. I had my surgery there in May of 2001. My first follow-up visit (third trip to NYC) was to be late August, early September. I made appointments to be there Sept. 5th.

My oncologist (just one of the doctors I was supposed to see there) called me in late August and asked me to change my Sept. 5th appointment to Sept. 11th. I told her I already had already booked a flight and hotel arrangements, had also made child care arrangements for Sept. 5th. I told her I was supposed to have chemo Sept. 11, so didn't want to change my appointment date. She was a bit flustered with me, but told me okay, just that one time we could have a phone conference vs. an actual appointment since she would be unable to see me Sept. 5th.

I went to Manhattan on Sept. 4th-6th for the rest of my appointments. My husband and I had walked a lot in upper Manhattan my first trip there (highest rent zip code in the US), and Midtown my second trip there (Carnagie Hall, Times Square), so for my Sept. 5th appointment, we decided to explore lower Manhattan, the one area we'd never been. We had a picnic lunch near the Twin Towers. I got a picture of the skyline and the Twin Towers from the Statton Island Ferry.

I developed the pictues on Sept. 10th and showed my kids the Twin Towers on that day. On September 11th, I went to my chemo appointment, and when I got there everyone was in front of the TV. I asked why...they told me of the attack, that the Twin Towers had just collapsed. I saw on the TV people running down a smoke-filled sidewalk...I'd been on that sidewalk just days earlier. I thought of how I'd been near the Twin Towers just days before, probably seen many people returning to work in the Twin Towers, maybe after eating a healthy lunch, maybe a stop at the local health club. I'd felt so vulnerable when I was there and had doubted my cancer would let me live a long life; they'd been healthy and had done everything right and expected many tomorrows. Then the planes hit their buildings. It seemed so ironic. I immediately accepted something I'd heard; none of us are promised tomorrow.

I went to church after Sept. 11th and they did a slide presentation of the Twin Towers attack. I sobbed and sobbed the entire service. I saw the pictures, heard the cries, saw those who decided to jump vs. being burned to death. My heart broke.  I'd just been there.  I knew all of the sites in the slides.  To me it was personal.

I went again to NYC for yet another appointment a few months later. I went to Ground Zero, just a big hole in the ground. The quilts and pictures were still all displayed. The depression in the city was palpable. So many who had assumed long lives had perished. It was hard to wrap my mind around it. My kids hated that I was going back to NYC, and that I used an airline that had been used in the attacks..."but mom, they fly your plane into buildings!".

I always stayed at the same hotel in NYC, so after the fact I asked the hotel staff what Sept. 11 had been like. One said he and his son lived in lower Manhattan. When he learned of the attacks, all public transportation had been suspended. He had a child in grade school in lower Manhattan, so he'd left his job and ran miles through barricades to find his son. It turned out his son had seen the Twin Towers hit by the planes from his grade-school classroom window. His son now slept with him every night, he was afraid, insecure.  The depression in NYC that trip was palpable.

September 11th had such an impact on me. What if I had changed my appointment and been there that day? Would I have been at the Twin Towers on their observation deck, maybe? Would I have not been able to come home, though my kids expected me? Would I have run down that same smoke-filled sidewalk? So many healthy and innocent people died. Why did I deserve to survive?

It gave me new incentive.  I knew if I survived, I needed to put my survival to good use.  I hope I am doing that, and am so grateful for the opportunity.

Sunday, October 24, 2010

What Helped and What Didn't?

If any of you who read my blog have time, I'd love your input!  Many people who have friends newly diagnosed with appendix cancer contact me to ask me how to best help.  Many have never had a close friend with cancer and have never been cancer patients themselves, so are at a loss.

I try to tell them what was helpful from my experience, but I'd like to know what you thought was helpful also (just leave comments here or email me).  Did people do and say things that were helpful to you?  Did some inadvertently do the wrong things, even if they were well-meaning?

I'll itemize here what was helpful, and not helpful to me:

  • I appreciated anyone who helped me with my kids, both watching them and supporting them emotionally.  My mother-in-law was my godsend, she watched my kids when I had to leave the state for appointments and for surgery, and was always their "counselor".  Teachers at school also paid special attention to my kids and knew to let me know if they were struggling in any way.  The worst part of my diagnosis was the effect it had on my husband and kids, so I greatly appreciated anyone who supported them.

  • I was grateful for offers of help with physical things, but was also glad that everyone respected my right to do all of the things I normally did like cooking, cleaning and shopping; I wanted to do a lot and didn't want to be treated like an invalid after my surgery.  People respected that.

  • I appreciated a donation I received from my church and the many phone cards people gave me; cell phones weren't quite what they are now when I was diagnosed, and everyone wanted to be able to help me communicate with my kids when I was gone.

  • I appreciated the many cards and notes of support I received.  I also appreciated when people gave me books or articles about people who had survived a cancer diagnosis.

  • I appreciated that my husband was always there for me, loved me unconditionally and was my "rock". He stayed at the hospital as long as there were visiting hours, but didn't stay the night (that would have made me feel badly).  He played cards with me and walked the halls with me and wouldn't eat in my presence if I couldn't eat while I was in the hospital.  He let me do as much for myself as I could.  He always let me know he could take me to chemo if I wanted him to, but also respected me when I wanted to transport myself.  He never treated me like an invalid or "sick" person, but he went with me to all of my doctor's appointments.  He helped me access my lab and CT results within 24 hours of my tests so I wouldn't have to wait for my doctor appointments to learn the results.

  • I got very frustrated with those who felt I always had to "think positive" to survive.  My life was a mess after I was diagnosed.  Sometimes I felt depressed, afraid and angry, and I wanted to be able to voice that.  I didn't always feel positive but felt I always had to put on a positive front as so many insisted I wouldn't survive if I didn't "stay positive".  It always occurred to me that if I had a broken leg or pneumonia, no one would have told me I had to have a positive attitude to get better....they would have told me to go to physical therapy, eat well, rest, drink lots of fluids etc.   They would have understood if I was sad or in pain or depressed with being ill. My best friend helped me the most, I didn't have to put on a positive front with her, I could always express how I really felt when we talked.

  • I'm not sure why, but  many told me when I was first diagnosed about all the people they had known with cancer who had lost their battles.  I was puzzled at why they felt they had to tell me that?  It happened multiple times.

    That's all I can think of right now, but I know many of you had people who supported you, and maybe some who inadvertently did things that were not helpful.   If you share them here, I think many who ask these questions will appreciate your input.  Thank you in advance!

Tuesday, October 12, 2010

Cancer Disparities

I learned a lot at the AACR Cancer Disparities Conference I attended in Miami. With all socioeconomic factors being the same, cancers are different in some ethnic groups. Black women are more likely to be diagnosed with breast cancer at an earlier age, and are more likely to have the triple negative pathology, which has a worse outcome. Hispanic children with an American Indian ancestry are less likely to respond to treatment for one of the leukemias.  All things are not equal.

Much about genomics was presented (which was great as I am involved in graduate genomic education!). A person can be genetically tested for ancestry, and many who identify themselves with a specific ethnic group are found genetically to have very mixed ancestry; for example the genetic ancestry for those who claim to be African American is very different for those in the US compared to those in Europe.

What was really interesting to me was that researchers said in the future cancer won't be seen as organ specific (breast, colon, pancreas) but will be identified by its genetic makeup. Two people with different cancers can have the same genetic mutation causing their cancer, so chemotherapy for a lung cancer might work well on someone with breast cancer or melanoma who has the same genetic mutation. All cancers are genetic....only 5-10% of cancers result from the genes we inherit from our parents, the rest result from mutations in genes we acquire as we live. Mutated genes can produce proteins that cause cells to become cancerous. Now that specific mutated genes are being identified, "targeted" therapies are being developed. A physician showed us an x-ray of a patient with lung cancer; there were many lung tumors visible. That patient had a rare mutation that responds well to a particular chemotherapy that is taken in pill form. He showed us an x-ray taken after the patient had taken one pill a day for a week....the tumors were gone. That is an example of a targeted therapy. Not all lung cancer patients will respond to that drug, only those with that specific mutation. Using genomics, they are beginning to be able to identify which drugs will work on which cancers and which patients will or won't respond to therapy. Some appendix cancer patients are now being tested for the KRAS mutation. If your cancer has this mutation, the drug Erbitux will have no effect on the cancer. It is a very expensive drug, so identifying this mutation saves the patient the cost and side effects of what would be a useless therapy.


There was also a lot of presented about clinical trials.  There are so many new cancer treatments and targeted therapies that need to be tested so that they can be approved by the FDA for use, but very few cancer patients participate in clinical trials.  I hope to learn more about clinical trials and to present the information here.