Cancer Web Sites

You won't get cancer from these sites, but you will learn a lot from them.

Since I was found to have cancer about 6 weeks ago, Roni and I have been doing a lot of research on the subject. Here are some sites we found very informative.

Cancer.gov - This is the web site for the National Cancer Institute, which is part of the National Institute of Health.

American Cancer Society - This name of this site speak for itself. There is a lot of good information for health professionals, patients, survivors and friends and families of those with cancer.

PMP PALS - This site deals with cancers Rare Intestinal Cancers, Appendiceal Cancer and Pseudomyxoma Peritonei

Brian's Story - This site was started by the wife of someone who went through what I am going through. She has documented their journey, and also has a support page which I found to be very helpful.

Sugarbaker Oncology Associates - This is the web site of the doctor in DC that we are hoping to see soon. Hopefully he will say that I am a good candidate for his procedures. I have been in email contact with a few people that have been to see him and they have nothing but good things to say about him and his treatment. It doesn't sound like a piece of cake, but at least when you're done there, the cancer should be gone.

Cancer Care - A general site on cancer

ACOR - Association of Cancer Online Resources

ChemoCare - A site about Chemotherapy

Washington Health Center - If we go to Washington DC for treatment, this is the hospital where we will be.

I hope that you find these sites useful, and never need them for yourselves.

What would we do without you?

This is Roni writing:

Without our faith -- and without the support of so many who help to bolster out faith when we're having a hard day -- I don't know how we'd get through those hard days. Not to mention that there'd be a lot more of them, if not for you.

And without being able to share the joys and challenges in the lives of so many we love -- helping us to lift our eyes from our own struggles -- the quality of our life would be tremendously diminished.

After a very frustrating (putting it mildly) phone call with our oncologist this morning (see separate entry if you've not yet heard about it), I sent out a sort of S.O.S. prayer request to Kevin's immediate family, my immediate and extended family and my congregation. I just returned home after an afternoon of errands to find many emails assuring us of prayer, love and support. It did so much to bolster me--more than I know how to express.

I keep saying that your prayers and kind and encouraging words help more than you can know. Now science is backing me up.

The following excerpts (in italics) are from an article entitled "God Help Us" printed in Time Out New York's Oct. 16-23, 2003 issue. (Thanks Marlene S. for the photocopy). The article is about the power of prayer and meditation in healing. It focuses in part on the findings of a recently completed study of Tibetan monks, which measured positive affects of meditation on the brain, shedding more light on the mind-body connection. I read a similar article based on the same study a few months ago in Time magazine.

Keep those cards, emails and phone messages coming!
The Time Out New York article quotes Veruschka Biddle, a psychologist who coauthored a book about the relationship between "Spiritual Healing" and healing from cancer. He says,
Cancer patients are so physically and emotionally drained, but when you work to bolster their sense of spirit, suddenly many of them are able to get stronger. [I knew that!] We have seen some dramatic improvements.

Prayer Works
Some people believe—and some research suggests—that praying for others works... '"There have been eight studies published on the effects of remote prayer, five of which showed statistically positive results," says Larry Dossey, a physician... The article goes on to describe how patients improved in a triple blind study (they didn't know they were being prayed for.)

We also know that sometimes people who are prayed for don't get better. It's not because the prayer was "not enough" or "not right." As Kevin often says, "G-d always answers prayer. 'No' is also an answer." We also know with perfect faith that all of G-d's works are done in faithfulness.

What answer we receive is in the hands of a sovereign, loving G-d. Praying is in our hands. We are so grateful to be in the prayers so many and also for the many ways that G-d has already graciously answered "yes."

Why You Shouldn't "Spare Us" from Your Problems or to quote 1,000 Maniacs, "Trouble me, disturb me with all your cares and your worries."

It's actually good for us! The article states:

...in the tests on the Tibetan monks, the greatest increases in left-prefrontal-cortex activity [the part of the brain associated with feelings of happiness, alertness and well-being] occurred when they performed a type of meditation in which they focus on compassion for others, which is akin to praying for the well-being of others. There were also strong results associated with meditation that focus on devotion.

Mmmm... Barrium

Kevin here with info on the PET and CT scans.

Well, the PET scan and CT scan are done. Fortunately, they weren't as bad as I thought, but I'll have to admit, barrium does not taste good.

The procedure started with a technician giving me a shot of a radio active "tracer" for the PET scan, then bringing me a big bottle of barrium to drink for the CT scan. He said I needed to drink as much as I could before the scan started. Well, that was about half of the bottle and luckily that was enough. After that, I changed into a hospital gown for the scan.

The technician who was doing the scan brought me into the room with the scanner and started explaining how things would work. I asked if I could use the restroom first, and while I was in there, I kept thinking, "man, that guy looks and sounds familiar." I go back to the room and say, "What's your name?" He replies, "Salvatore."

"Sal!" I say. "I'm Kevin, from NYC HOG! (for those who don't know, HOG stands for Harley Owners Group, and is a group of people that I ride with)" It takes a second before he recognizes me, then pulls out a picture of a few of us HOG members at a ride last year. I filled him in on my situation and he told me about how during the spring he was in an accident and took 10 weeks to get his bike fixed. Then 3 months later, someone stole it. He also told me about his new bike (Harley Road King). Got to admit, made me kinda jealous.

The scans took a couple of hours and I must admit was very relaxing. Even almost fell asleep, that is until the motor that moved the bed started up. That stupid motor kept me from dozing off cuz it started every 5 mins. :-(

Anyway, the scans were completed, and Roni and I had to run across town for an appointment with my ostomy nurse. I have been having problems with my ileostomy and asked her for advice and if we could try a different product than the one she sent me home with. She finally did give me a new type of bag to use, which so far is OK, but I will still be glad when I get this reversed and don't have it any longer.

The nurse also kept commenting on how well I looked, and said that when I was in the hospital, she was told about everything that was wrong with me, and thought to herself that she didn't want me as a patient because it would be too depressing. I guess she thought I didn't have that much of a change of making it, or coming out of it healthy as I am. I realized that I am too ornery to die as long as I have something to complain about. And believe me, when you are in hospital with an ileostomy, you have ALOT to complain about. :-)

Some other news, I have an appointment with a nutritionist next Tuesday. We need to find a good diet for me to be on which takes into account the cancer and ileostomy.

Next week, we need to start getting copies of my records to send to Dr. Sugarbaker in DC. If he does decide to take me on as a patient, I hope the surgery is done sooner than later. One, so I can get it out of the way, and get rid of the cancer, and two, chances are good that they will reverse the ileostomy at the same time. That would mean that when I leave the hospital from that surgery, I will be cancer free and ileostomy free. Life couldn't get much better than that right now. For those who want to know how to pray, that would be a good way.

Well, that's about all the news for now. We'll post more as we get it.

Thank you all again for everything.

Kevin

CT & PET scheduled for Friday

This is Roni writing

Kev's imaging is scheduled for late morning on this coming Friday, 11/21.

These baseline images will be used to determine if the cancer has grown since the surgery and if so at what rate. I really liked our oncologist's response when I asked him about the typical rate of growth for this rare strain of cancer. He said that since the information available is anecdotal and case studies only -- no systematic studies -- there is no "typical," but that statistics don't really matter anyway. What matters is the rate of growth in Kevin's body, and that's what these scans will determine.

When I pressed Dr. Ratner (oncologist) about prognosis, he replied "Kevin will write his own prognosis." He has already reached out to four other doctors to learn about the latest treatments. We may go to DC to confer with one of the country's handful of specialists on mucinous adenocarcinoma; we will be talking to Dr. Ratner about that possibility this week.

Next step -- finding a nutritionist who can help design a cancer-fighting, immune system-boosting diet that will take the ileostomy into consideration, one that can also work with us to modify the diet as needed for chemo treatment.

This past Sat., Kevin went to his first Shabbat service since the surgery. It was a small service for members only in the rabbi's home ( the place we've been renting was not available this past Sat.). We walked in late (challenging morning), and they stopped the service and everyone applauded. That felt good! We continue to be blessed and humbled by all of the love and kindness so many are giving -- H.O.G. buddies (Harley Owners Group), our rabbi and rebbetzin who are always just a phone call away, the rest of our loving congregation, caring co-workers and of course family. Kev's parents are here now; though a low key visit -- no sight-seeing this time -- it's been nice to laugh, watch movies, show pictures, grocery shop :-) etc. with them.

Kevin goes back to work Wednesday. Not sure if he'll last a full day, but I think it will be good to get back to a more normal schedule and get out of the apartment! Since the treatment plan is still up in the air, for now I'll be looking for temp work and pursuing a business idea.

And that's all the news that's fit to type for now...

New Doctor. More Tests.

We met with a new oncologist who we will work with to determine my treatment.

This Monday, Roni and I had an appointment with a Dr. Lynn Ratner (Dr. Ratner is a male doctor). Dr. Richard Warner, the Carcinoid specialist we saw a couple of weeks ago, referred him to us. He has been treating cancer for many years and although he has not dealt with my particular cancer in a few years, he has kept up with the latest developments. He is even willing to reach out to other oncologists and specialists for help. An example of this is while we were meeting with him, we asked about a form of treatment that is being performed by a Dr. Paul Sugarbaker in Washington DC. He said that he had heard of the treatment, but needs to get more information before he can suggest it for my situation. He then looked through his directory and found Dr. Sugarbaker’s phone number and placed a call. Dr. Sugarbaker was not available, so he was told that one of his associates would call him back later. (Later that day, Dr. Ratner called back to inform us that he was able to talk to the doctor in DC, and they would be willing to see me. I am not sure if this is necessary or not, but to know that this route is available is a good thing.)

Before any treatment can be done, we first need to get a new CT Scan done that will be our baseline for determining my treatment. For those who don’t know CT stands for Computed Tomography Imaging (don’t ask me why they don’t call it a CTI scan.) For those who don’t know what this is, it is like a high tech x-ray that scans your body in sections and is able to create a 3D view of the area they are scanning. The problem is that you need to be given a “contrast agent”. Usually this is given orally and consists of drinking about 36 to 48 oz of the agent. When I had this done during my time in the emergency room, the contrast agent was given to me through a NG tube (if you can avoid it, never get a NG tube) so I didn’t have to drink it. Next time, I would rather drink it. If you would like more info on CT scans, you can find it here.

Apart from a CT scan, I will also have to have a PET scan done. PET stand for Positron Emission Tomography. (You can find more info on PET scans here,) Instead of a “contrast agent”, a PET scan uses a “tracer” which is injected (great, more needles).

As mentioned above, these two tests will be used to determine the next steps in my treatment. So right, now this is about all we know. Not as much as I would like, but we are on our way. (BTW-These tests have not been scheduled yet, but hopefully will be next week.)

Another thing we keep hearing is that studies show that having a positive attitude goes a long way to recovery. So I am trying to keep a positive attitude that I will beat this and be cancer free after my treatment. And as for something to look forward to, Roni and I are planning a trip after I am better. We will be going to the Badlands of South Dakota, somewhere I have wanted to visit for awhile now. I have always wanted to see Mt. Rushmore, Devil’s Tower, the site of Custer’s last stand, the Badlands, and of course, Deadwood, SD, the town where Wild Bill Hickock lived and was killed. Our current plan is to fly to Rapid City, SD and rent a Harley, find a nice place to stay and spend about a week riding, site-seeing and relaxing.

Finally! Confirmed diagnosis -- mucinous adenocarcinoma of the cecum

Described on a survivor's website as "one of the 'nicest' types of cancer a person can get. ...it is not a typical "invasive" cancer.

Roni writing:

We got a call yesterday afternoon from the 2nd opinion specialist who told me the diagnosis: mucinous adenocarcinoma of the cecum. From what we've learned in a very short time this is much better news than garden variety colon cancer! As we understand so far (just a few hours of Web research) this is a very rare (and "friendlier") strain of colon cancer. Leave to Kevin to have something “special.” But now that we have a sense of the enemy* we can prepare to fight it. We'll know more, of course, after we see the oncologist (Monday).

The doctor had his pathologist review all of the pathology slides done at the hospital, plus stain for himself some blank tissue slides they provided, and the results are conclusive. Plus, what we've learned about this disease in just a few hours fits with the symptoms and with all we've learned from doctors so far. Also, the fact that this is a rare disease explains the puzzled looks on the doctor's faces, why one doctor would examine him and then come back with five more doctors and why I got vague answers to specific questions...

But most encouraging (in a relative sort of way) is what we've read so far about how the disease acts and progresses.

Best layman’s explanation I have found follows:
_________________________________________________
From “Brian’s Story” (http://cyberhideaway.com/BriansStory/ and http://cyberhideaway.com/BriansStory/updates2.html)

“...there isn't a lot of information out there on the net about this particular type of cancer. We are not doctors, and we don't have the medical knowledge to explain fully what many of the things mean. The treatments that Brian is going through are fairly new [this was in 1997], and we have discovered that not many doctors out there are even aware of them.

This type of cancer, as we were told, is one of the "nicest" types of cancer a person can get. ...it is not a typical "invasive" cancer.

When we asked the doctors, they went on to explain to us that this type of cancer is a rare strain of colon cancer. However, where colon cancer is invasive and will replace a good cell with a bad cell, this cancer is not that way. The type that Brian has does not replace a good cell with a bad cell. Instead, the bad cells make the gelatinous goop. Then the goop attaches itself to organs. If the goop is left inside, it will eventually "smoother" an organ. [This is what happened to Kevin’s appendix. The tumor surrounded it, and the appendix “disappeared.” If you’re going to have an organ swallowed, it’s good that it be one you don’t really use anyway.] Now, we were also told that another "nice" thing about this cancer is that it grows very slowly.” [This explains why the oncologist we saw in the hospital said both "colon cancer" and "slow growing" -- two phrases that don't normally go together.]
__________________________________________________________________________

*My Prayer During Cancer

Lord, I have just received the diagnosis of cancer.
Still my anxious heart as I seek to understand why.
Teach me to transform my suffering into growth,
my great fear of tomorrow into faith in your presence,
my tears into understanding,
my discouragement into courage,
my anger into forgiveness,
my bitterness into acceptance,
my experience with cancer into my testimony,
my crisis into a platform on which I can learn to help others.
God grant that one day I can embrace this time
as my friend, and not as my enemy.

~ Judy Kneece, RN, OCN


What Cancer Cannot Do:

Cancer is so limited . . .
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the Spirit.
It cannot lessen the power of the resurrection.

~ Anonymous


Serenity Prayer
God, Grant me the Serenity to accept the things I cannot change, the Courage to change the things I can, and the Wisdom to know the difference.

Living ONE DAY AT A TIME; Enjoying one moment at a time; Accepting hardship as the pathway to peace.

Taking, as He did, this sinful world as it is, not as I would have it.

Trusting that He will make things right if I surrender to His Will;

That I may be reasonably happy in this life, and supremely happy with Him forever in the next.

Amen

~ Reinhold Neibuhr


Romans 8:15-39

Visits and phone calls

Kevin feels up to about one visit and/or phone call per day

Kevin has a week or two before he starts working from home, and then hopes to get back to the office part time. He is still tired enough that he's not yet bored, but still would like to re-connect to the outside world with visitors.

If you'd like to visit give us a call first at home* so we don't end up with multiple visits on one day. You'll likely get the machine (we are screening calls). Leave a message; if we're not resting (Roni has a flu/virus, so is resting too), we'll pick up.

If you want to chat -- phone visit (might be a good idea if you don't want to catch Roni's bug!) -- we'll pick up if we're not already maxed out on calls/visits. If we don't pick up, we'll try to get back to you within a few days.

Visits and calls are a great pick-me-up, but they also take energy, so bear with us as Kevin seeks to strike the right balance.

Also, Kevin's parents are coming to visit from 11/14 to 11/18, so he'll most likely not be up for other visitors on those dates.


*Our new address is 175 E. 96th St. (between 3rd and Lex in Manhattan), Apt. 9H. New phone: 212-410-5196.

We haven't called or emailed back because...

...last week was a very full week:

• 2 doctor's visits
• my parents here with us for two days to help get us better "moved in" to the apartment (Thanks!!)
• a visit from my brother and his wife on Friday evening (wonderful to see you!)
• I (Roni) got the cold/flu achy thing that has been going around

Just wanted to let everyone know that though you haven't received a response from us, your calls and emails of love, support, encouragement, offers of help and places to stay in Hawaii, etc. continue to mean so much. Knowing we have so many people who care and are praying really strengthens us.

Thanks!

Love, Roni

Diagnosis is Uncertain

When we saw the specialist on Thurs., he said that some of what we were told in the hospital does not appear in the pathology reports.

Fortunately, this specialist who "squeezed us in" to see us this early knows the questions to ask. Also, he with have his own pathologist review all of the slides and stain some blank ones. He is also doing blood tests [Kevin complained they took 6 pints! ;-) ] and other lab work. We should have all of the results in about 2 weeks.

In the mean time, Kevin continues to heal quickly from the surgery. We walked the 8 blocks to the doctors office today (for the blood work), then a few blocks to a diner for breakfast (Kev had to fast prior to blood work) and then on home. Of course, kevin is now sleeping to recover from all the exertion, but he's doing great!

By the time Kevin is strong enough to start chemo, this specialist should have gotten to the bottom of just what type of cancer (s?) we're dealing with, and he has recommended a top oncologist.

In the meantime, we continue to be so grateful for all of the emails and calls of support.

Good News and No News

After meeting with the doctors this week, we got some good news and some confusing news...

On Tues of this week, we met with the surgeon who cut me open and most likely also saved my life. He said that he was very impressed with how well I was healing and that some people would still be in hospital. That was the good news.

We also asked him again about what type of cancer he found and he reiterated that some of it was carcinoid, but that there was also another type. As he is not a oncologist, he was hesitant to say anymore.