Another Anniversary

We just passed another anniversary.

October 8th, 2003 - Seven years ago from the 8th, I went into the ER with severe abdominal pains. We ended up staying in the ER for about 16 hours, and that includes being moved to another hospital where my doctor at that time had admitting rights.

October 9th, 2003 - Seven years ago from that date, I had an emergency surgery for the severe abdominal pains. It was a three hour surgery and I woke up with an NG Tube, a temporary ileostomy and about a 10 inch scar running down my stomach, and what eventually became a fistula.

It would be a few more days before we were told I had cancer.

I still believe I shocked a few people when I walked out of that hospital, and even came back a few weeks laters. I'm sure there were some who believed that I would probably never leave that hospital alive.

Not only did I walk out of that hospital, I'm still alive, 7 years later with a lot of life lived during those years. I believe our goals should always be to prove the doctors wrong. :-)

Roni's Musings and Reporting

Kevin's last posting (let me just say, what a man!) reminded me of a poem I discovered early on in our Journey:

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

I posted that same poem to this blog in November 2003. At the time, it was an inspiring ideal. Now I understand that cancer tries to do many of these things, and will, if you give over to it.

Though Kevin's been a bit rawer and more transparent than I, we tend to post here when we've come out on the other side of challenges. But I'd hate to give the impression that we haven't struggled with the "demon" that is cancer and the "personal demons" that rise to the surface when one faces difficulties. But through it all, I've seen Kevin -- and felt myself -- upheld by the foundation of our faith and the loving hands of G-d. Sometimes it has felt as though we were in free fall, but never as though we'd fallen into an abyss. Through grasping (sometimes after grappling with) the truths that G-d has lovingly revealed through scripture, we've always come back to that foundation with fairly soft landings. I am so grateful for the truths that have guided us, and the Hand that has held us. I'm so grateful for support from so many people G-d has used to help us in so many ways. A long-time family friend put it beautifully when he said, " With [Kevin and Roni] we can be only thankful for all of the helping hands--social and medical. With them we rest in Him Who only has unfailing, heavenly hands.”

So, that's the musings part of my posting. Now on to the reporting part.

I realized from some comments we've received that many people equate hospice with very final "deathbed" stage of deterioration. Let me assure you that Kevin is not an invalid. Hospice can be involved early on, as soon as one chooses to discontinue treatment, and that's what we've chosen, in order to enhance Kevin's quality of life. For example, a good hospice will advise on the appropriate amount of activity and exercise to keep the patient strong and limber without taxing their reserve. They may teach therapeutic massage to deal with aches and pains from a more sedentary life. etc. The point is that Kevin is still mobile, still has his wits about him -- though he needs a bit more help with remembering words and editing when he writes than before. He's lost some weight and he sleeps more -- about 40% of a 24 hr. period -- and rests a lot while awake. But he also has moments when he's feeling pretty well and continues to help out with light household chores, runs short errands, takes Elke out, and cracks me up with his quirky wit on a regular basis.

"You Beat This!"

Now before you all get excited from the title of this post and think that the cancer is gone -- it isn't -- let me tell you why my oncologist told me that the cancer didn't beat me, but that in fact, I beat it.

Those who have been following my blog for awhile will know that part of my original diagnosis is what is referred to as "Signet Ring Cells." It is important to know this because some of the doctors that we have met did not believe us when we told them I had Signet Ring Cells (SRC). One doctor said I probably misunderstood, because if the Oct 2003 diagnosis of SRC was correct, I would not be alive today. A couple of doctors even insisted on doing their own pathology reports to prove me wrong. You see, SRC is the more aggressive of the colorectal cancers; and people diagnosed with it usually don't make a year. As for me, tomorrow will be the 7th year anniversary of when I went to the hospital complaining of severe abdominal pains. Needless to say, for the past 7 years more than one doctor has been stumped as to why I am still alive. It is also needless to say that we believe the reason is answered prayers, aligned with the Will of G-d, and for whatever reason, He has decided to keep me around. Just by staying alive for seven years, I, beat the standard prognosis.

In those 7 years I have had 5 surgeries related to cancer, been septic, had numerous rounds of chemo and 5 weeks of radiation, weeks of recovering from the surgeries, learning to deal with an ileostomy for 9 months, the side effects of the chemo and radiation, countless blood tests, and I can't even remember all of the CT/PET or just CT Scans. So while, yes, I have survived the cancer, it has not been an easy road, and I have the scars to prove it. Both emotionally and physically. Every scar I have is another reminder that I beat whatever this cancer could throw at me.

Let me take this opportunity to say that because of the success of those treatments, I have also had the opportunity to enjoy life. Roni and I have traveled twice to Israel with good friends for the Bar Mitzvah of each of our Rabbi's sons. We've been able to take vacations in Arizona (one of our favorite states), The Bahamas, Jamaica, the Florida Keys, Vermont, a week with Roni's and my parents in Virginia, a week long cruise in Alaska with my family, a week in the Wisconsin Dells with my family and just recently, two amazing weeks in Australia where I was able to reconnect with old friends and show Roni where I grew up during my high school years. And I celebrated my 50th birthday in New York with close friends. So, in continuing to enjoy life, I beat cancer.

I've also been able to help others who have been diagnosed with this disease through our on-line support group and through this blog, and please G-d, may they continue to help others even when I am no longer able to contribute to them. Which brings us to the reason for this post.

Yesterday, Roni and I met with my oncologist. The same person who just 2 weeks ago told us what our options were. She asked if I had made up my mind about what I would like to do. I had made my decision. After much thought and prayer, discussions with Roni, counsel from trusted sources, I had made the decision to forgo any further treatment and start with home hospice care. The doctor understood the decision, and explained how home hospice would work and how things would now progress.

Last night I spoke to my family to let them know of my decision. My sister asked if they gave me an expiration date  :-). With a chuckle, I said no. None of us really know how long I have. We believe that with people's prayers and G-d's intervention, I have already lived longer then any of the doctors have thought I likely would. I know people will continue to pray and we believe that G-d will take care of things in His timing. So we are going to leave those details in His hands.

As we were getting ready to leave the appointment yesterday, the doctor looked at me and said (I didn't have a tape recorder on me, so I'm paraphrasing here), "Don't think that this cancer beat you. You have lived longer than anyone would have thought. With all of the treatment you had, you had probably 80% of that time as good quality of life. And with all the people you have helped with your support group and blog, don't think for one minute the cancer has beaten you. In fact, You Beat This." I know that I didn't beat it alone. I had a "band of brothers" to fight beside me (I wrote about my team here), and we believe most of all, G-d fought for me.

Choosing hospice doesn't mean I'm laying down and giving up. I'm expanding my team to include the expertise of hospice care in order to achieve the best possible quality of life I can. We continue to pray for a miracle, and I plan to live each day enjoying life as much as possible. I want to spend time with family and friends. And I will continue to give my support where it is needed, my advice when it is asked for, and my wisdom for what it is worth. :-) That's why I won't be removing the phrase, "So far I'm winning" from the heading of this blog page. G-d is in control, not cancer, and that means that even if G-d does not perform that miracle, cancer still doesn't win!

Dwelling in a Sukkah. Physically and Spiritually.

I began writing this post at the beginning of the Jewish Festival of Sukkot. (You may also hear it pronounced Succus, which is the Azkenazi Hebrew way of saying it.) "Sukkot" means Booths or Tents. You will also hear it translated as Tabernacles. So the holiday is commonly known as The Feast of Booths or the Feast of Tabernacles. You can find it mentioned in the Bible in Leviticus 23:34.

Sukkot is the plural form of the word sukkah. Holiday observance requires that we build a temporary structure, a sukkah, and dwell in it for 7 days. This does not mean that we are to "live" in our sukkah, spending every waking hour in it. But we are to spend what time we can, sitting in the sukkah, eating in the sukkah, etc. The main point is we are to reflect on what it was like for our ancestors as they traveled through the wilderness, waiting for G-d to bring them into the land he promised them.

After G-d brought us out of Egypt as slaves, He led us to the land that He promised for us. When we got there, twelve men were sent into the land to scope it out. Two came back saying it was a great land and that since G-d had promised it to us, we should go in and take it. The other 10 however did not see it the same way. They saw how good the produce was, but that it was also filled with men who were "giants" in their eyes, and they saw no hope of ever taking the land. And so for their lack of faith, those ten men, and the people that sided with them were not allowed to enter their promised homeland. After that, G-d required all of Children of Israel to wander in the wilderness for 40 years until the generation that did not believe that G-d had the ability to bring them into their land had passed away.

So for 40 years we never had a permanent place that we would be able to call home. We lived in temporary structures. The sukkot (booths, tabernacles, tents), were a reminder that we were not home yet, we were still on our journey to what would be our home. And since our people had been in Egypt for about 400 years, no one knew what "Home" looked like or what it consisted of. Only a couple of men had a glimpse of what our home would be like. All we had to keep us going were what these two men remembered, and what we were told by G-d, that is, it was a land of milk and honey. So while we were travelers, living in tents, our final destination was some place that all but two of us had never seen and we had no idea what was in store for us when we got there.

But, we were given a promise. That promise was that when we got to this land that no one had ever seen, we would be able to stop living like nomads. We would be able to build permanent houses, plant fruits and vegetables, raise livestock, start businesses, etc. We would finally, be Home!

Sukkot is a holiday to remind Jews of our historical wandering. But it also serves as a symbolic reminder to all human beings that while on earth, we are on a constant journey. Even if we find a place to physically call home, spiritually we know that we are only traveling through, on our way to a permanent spiritual home.

Our bodies, are our "sukkot". Our tabernacles, or tents. A place for our spirits to temporarily dwell while we are here on earth in our mortal coil.

The sukkah that we build during this time of the year needs to be recognized as a temporary structure, which means it has no solid foundation. Its frame is made of wood, rods of metal or tubing and it's walls are normally made of some type of cloth or tarp. It would never meet any type of modern building code. And it seems like it is a yearly occurrence that a strong wind, or storm tries to bring your sukkah crashing to the ground. (Sure enough, while I was writing this, a giant thunderstorm moved through the Bronx. What timing!) It's not unusual to have to go out after such a storm and make some necessary repairs to make sure the sukkah will stand for the rest of the holiday.

While on earth, our body (our sukkah) is also subjected to storms, heavy winds, and tempests with the result of testing our structure and seeing if we are strong enough to withstand whatever is thrown at us. Occasionally it is necessary to go in and make some repairs after a "storm". Personally, I have had some parts of the structure broken, and have had my share of repairs. I have had to have some parts completely removed because they had been subjected to "fungus" (cancer). And as more parts are removed, without the capability of replacing them, the sukkah begins to wear down. And sometimes, as the physical structure becomes less stable, the spirit, or the "thing" that dwells in the sukkah, starts to become stronger. We begin to remember that our sukkah is only our "temporary" dwelling to be used while we are on our journey to our final home. It is not meant to be a permanent dwelling, and eventually it will be taken down and we will move into our real home.

How long will our "sukkah" hold out? How long will our journey here on earth last? None of us really know the answer to that. Like the Children of Israel wandering through the wilderness, all we know is that when we are told by G-d to stay, we stay. When we are told by G-d to move, we move.

What will our final home be like? Will it be in a land full of milk and honey? Again like the Children of Israel wandering through the wilderness, we are not given a detailed description. We are just told that when we get there, we will know we are there. We are told by G-d that if we keep His covenant with us, He will lead us there, so our job is to follow Him. Like the Children of Israel, our journey is not easy, and there are trials along the way, but there are also times of joy, and G-d's promise of having a land or home, that will be OUR home. A place where we no longer have to worry about storms, winds, diseases, hunger, fear, etc.

When we get "home", we will then be able to rest, for some of us, cancer-free, and finally "dwell in the house of the Lord forever."

News Update from Roni

Roni writing, as I'm the one not currently taking pain meds. Kev's working on a new, more reflective, blog entry to be posted in a day or two, so stay tuned.

First the good news. No more panic attacks, thank G-d. We credit prayer and a change in medication schedule. Though when we last met with the pain specialist, he wasn't sure that med fluctuations had that much to do with it, so thanks for the prayers!

Many of you have already heard that because of the increased pain that Kevin had, along with some other symptoms, the docs decided to do a PET scan a month early to see what was going on. Turns out that the new site of pain was from a broken rib! We don't know how it happened, but are guessing that past treatments and/or a sedentary life have left Kevin with brittle bones? As far as what the scan showed about success of macrobeads, When Dr. Smith (doc running the trial) told us the PET scan results, he said he saw a "mixed result", as there were new nodules, but also a tumor had disappeared.

Then last week, while in for blood work, Kevin spoke with Dr. Berman, one of the other doctors working on the macrobead trial. Despite what Dr. Smith had said previously, Dr. Berman indicated that the disease was progressing, and suggested we schedule a consult with Kevin's oncologist, Dr. Alyson Ocean.

We saw Dr. Ocean today, and the bottom line is she said that while Dr. Smith may have a bias towards optimism, the test results indicate that the macrobeads are not working, and the disease is progressing with new nodules and significant growth of one of the tumors. She spoke to us about Kevin's remaining options, basically a review of what she spelled out prior to Kevin's decision to try the macrobeads. If we understood correctly, viable choices boil down to 2 levels of drug therapy or no treatment at all. Kevin has not been a candidate for more surgery since his last surgery with Dr. Loggie. None of the remaining options are curative. Basically, Kevin has a difficult choice to make between:

1. Treating with drug combo Irinotecan + erbitux. This is the most aggressive therapy that Dr. Ocean thinks Kevin is strong enough to tolerate. He has not yet had either drug, so there's no way of knowing if/how he would respond. Response rate (i.e. shrinking tumors or stopping tumor growth) is in the low-20s percentile, with an average life extension of 6 months for those who respond; on average, the drug ceases being effective after 6 months. Most usual side affects are stomach cramps and diarrhea, itchy rash and fatigue. Mouth sores and flu-like achiness have also been reported. There are other drugs that can be taken to help minimize some of the side affects. The challenge would be to find the dose that is effective in treating the tumors without the side affects being too severe.

2. Treating with erbitux only. When effective, this has the same 6-month result as the combo above, but when used alone it is effective only about 11% of the time. Side affects however are much less severe -- mainly the itchy rash and diarrhea. Kevin could opt to try this, and add irinotecan later, if erbitux is found to be affective and tolerated.

3. No treatment -- only palliative care. Rate of expected disease progression not known (especially in Kevin's atypical response to the disease), but life expectancy is months, rather than years. Symptoms (currently pain) could stay the same for some time, or worsen at any time.

Treating Pros -- if effective,
- tumors could shrink, thus reducing pain, thus reducing level of pain meds needed (which have their own side affects/quality of life issues). So net result could be improved quality of life, or at least maintaining current level
- could extend life for 6 months or more

Treating Cons
- odds are greater for not working than for working
- if drug is not effective, side affects would make quality of life worse

In the meantime, Dr. Ocean gave Kevin a prescription for an anti-depressant, he just needs to check with his pain specialist to make sure of no negative interactions with what he's already taking. He may also explore physical therapy to see if strengthening/stretching exercises could relieve some of his muscle pain and/or give him more energy. And we got the name of a licensed social worker that Kevin can talk to, plus a nutritionist that I can consult with.

And we continue to pray. I'm encouraged that Dr. Ocean said that the signet ring cells are still not acting completely like they usually do, in that growth has been less aggressive. Thank God for that, and for the fact that He has given wisdom and guidance every time there's been a decision to make. And we also remember that Kevin has had considerably better outcomes in the past than expected.

Life is still lived one day at a time, and fresh from the reflections of Yom Kippur, we are more determined than ever to make the most of each day. Today I took a vacation day for the first day of Sukkot -- a Biblical sabbath, and we had beautiful weather. After we got back from the doctor's, we enjoyed lunch out in our sukkah on the balcony, Kevin took Elke to the dog park, I got a little rest, and I helped Kevin work on edits to his next post. That's lot's to be grateful for and enjoy.

This coming Saturday evening we are helping to host a progressive Sukkot dinner for our congregation's members and some of their/our friends. First course is at our place, with 30-40 people coming to fill our home with love and laughter. Then we move onto two other Beth El member's homes in the neighborhood. We're looking forward to good food, good music and good company.

Back to the decision Kevin faces. We'd love to hear experiences from fellow PMPers who have been on either drug therapy described above. And as always, we appreciate the prayers of so many who follow our journey. Please pray for wisdom and clarity for Kevin, as he makes this difficult decision. And while you're praying, a miracle would be most welcome.

Roni

P.S. Dr. Ocean, when you read this, send me an email if I got any of the facts wrong!

Panic Attacks

Awhile ago, I had one of the most draining weeks I have ever had in the past few years. It started with a visit to my "pain" doctor to let him know about a new pain that has been cropping up. This pain is strange because it is not in the same area as the pain I had been experiencing over the past months. It seems to be below the ribcage, and feels like it is more in the abdominal area. I'd even say more like where the left kidney is. The doctor explained that there are nerves in the pelvic region, and when I have waste going through my bowels, it is most likely pressing on these nerves causing the pain. This can happen to anyone, but the tumors and inflammation I have somehow cause the pain to radiate through the left side of my torso causing even more pain in my lower back, left shoulder blade, muscles in the left side my neck, left arm, etc. At times the pain is quite excruciating. But then, it eventually goes away, and when it does, my whole body is exhausted. The narcotics I have been taking to deal with the original pain I was experiencing, slow the digestive process causing constipation, which adds to the problem.

To deal with the constipation, I began eating smaller meals more often and taking Senocot and Colace at night, which has helped me to be able to cut down on the narcotics. While that is a good thing, I found out that cutting back after having all of those narcotics in one's bloodstream, can cause withdrawal symptoms.

In my case, I first experienced extreme fatigue. I had no energy and was yawning like someone who had to stay awake because his life depended on it. Then my mind started playing tricks on me, and I experienced irrational fears. I thought maybe I was becoming dehydrated, and that I would have to go to the hospital for an IV. Then I started believing that if I did that, that was how I would die. I began to believe that this was the end. Fear gripped me and I panicked like I have never panicked before.

The day that the first panic attack set in, Roni came home early from work as she sensed something was going on after speaking with me on the phone. When she got home, she asked if I had taken all of my meds. I told her "no," so the first thing she did was make sure I took the pain meds I needed. After I calmed down a bit, she took the dog out, and I nodded off. When I woke up, I started to feel a bit more normal. Roni had called a couple of my doctors to let them know what was happening. We looked up on the internet what the withdrawal symptoms of Diluadid was, and it sounded like that could be the culprit. Initially, the pain doc said that I had enough narcotics in me, and he didn't think missing a dose of the Diluadid wouldn't have caused the problem. He said this because I also take Oxycontin throughout the day. As the end of the day drew near, I started to feel normal again. But strangely, the next afternoon, at about the same time of the day, I had another panic attack. We spoke with the pain doc again, and this time he said to try taking a Dilaudid an hour or so before I took my 3PM Oxycontin, just to make sure a drop in the narcotics level didn't have something to do with the anxiety. I made it though that day, again, starting to feel somewhat normal by the end of the day.

The next day, again at about 3PM, I started to feel the panic set in, but I was a bit more prepared this time. I had made sure I had taken a Dilaudid before the oxycontin wore off, and even though I still felt like crawling into bed, I decided to take the dog out for a long walk instead. It wasn't easy, and I kept going through the "What if?" scenarios in my mind. But Elke (our dog) and I made it back home after about an hour and a half walk, and even though I was exhausted from the walk, emotionally, I began to feel like I was back to my normal self.

That was probably one of the hardest weeks of my life. The fear of dying was very real, and although it wasn't logical, it made me think about what the cancer was doing. Roni and I had a serious talk about the very real possibility that the trial could fail, and if so, barring a miracle, this cancer could be terminal. It was a wake up call to become more serious about what I want to do with what time I have left in this world, and what I want to accomplish with that time.

Since then, I have been good at keeping on top of the pain, and making sure I take my meds when I am supposed to. I am still working on the "What do I want to accomplish?" question. The reality of what the cancer may do is still there, but the fear of having to deal with it has subsided. I have also come to the realization that my "normal" continues to change. Not always for the better. But just because my "normal" changes does not mean that my life is over. There are still things that bring me joy, things that still make me smile and laugh, things that I still have to take seriously, and things in my life that I am still able to accomplish. Even though I am living with a potentially terminal disease, I still don't know when my life will be over. In the meantime, I have to learn how to make the most of my life now.

Learning how to make the best of my life is a process. A process I continue to ask G-d to help me deal with. So I will continue to live life the best I can. I will continue to share what I have to share. I will continue to help others in ways, that perhaps only I can. I will continue to let others help me in ways, that perhaps they can.

For now, the process continues, and so do I.

Macrobeads - 32 Days Post Op

So, I imagine a lot of you are wondering how I am doing, and how successful the Macrobead Clinical Trial is going. I'll start with the Macrobeads.

Yesterday I had my 30-day post-procedure appointment, which only consisted of having blood drawn for tumor marker tests, and being examined by a doctor. I am still awaiting results. The first post-op testing I had done was July 1st. Those initial results showed that the CEA did go up to 111, which represents a smaller percentage increase than we were seeing before the surgery, and may be due to inflammation the beads can cause. So the fact that the rate of increase of tumor markers has slowed is encouraging, but the doctor says it takes a couple of months to know for sure if the beads are working.

As for how I’m feeling, I am still experiencing the pain that I had before the surgery. As I may have mentioned before, we believe it is caused by tumor, so we are not surprised that we have not seen any change yet. I am seeing a doctor that is a pain specialist who is treating me with some pretty heavy-duty medications, which are helping to keep the pain at bay. I take long-lasting pain meds twice a day, plus throughout the day, I take pain meds for "break through" pain (when the long lasting meds wear off and the pain starts up, but it is not yet time to take another dose).

I am also taking Ambien CR to help me sleep through the night, which usually helps, but sometimes the pain wakes me up, and I have to take another dose of the "breakthrough" pain meds. At night, I also take an Anti-anxiety drug, which also helps target the pain. The problem with taking all these pain meds is that I am usually sleepy throughout the day. It is not unusual for me to go back to bed to take a nap about 10 AM. The doc gave me some medication to help me stay awake, but I think that drug is causing "dry mouth" which becomes very annoying. I have tried not taking that drug for a few days to see if that is in fact causing the dry mouth, and I'm pretty sure it is.

The pain doc said the first goal is to get the pain under control, then we work on countering the side effects of the narcotics. Hopefully that won't be too far down the road...

So overall, things are going OK, but all that pill-popping serves as a constant reminder that the cancer battle continues.

Pain under control...But still tired

It is now 7:45 PM, Sunday, June 20th. Two days post op.

I am feeling MUCH better, although still tired. I have also been able to start cutting back on the narcotics to what they should be. I'm guessing that it may take awhile for the effects of the narcotics to start to wear off.

It is still a little tender around the incision area, but I can now get up out of bed, off the couch, etc., without much pain at all. Friday night it was impossible to even get in or out of bed without help, and without extreme pain.

Today, I have taken the dog out for a short walk, took a shower and have had a couple of naps. I am guessing it will take another week or so for things to get back to "normal", whatever that is.

As for finding out if the beads are working or not, I will have to set up a time to start having follow-up tests with the doctors to determine that. In the meantime, I'm just working on getting over the surgery.

Pain still pretty bad

Well, it is 11pm, just less then 12 hours since my surgery. We are thankful that it was successful and that they were able to insert all the beads they needed to.

However, the pain from the incision area has been excruciating. I have been taking narcotics pretty regularly to try and get on top of the pain, and only by taking more than is prescriped is it beginning to work.

I have a feeling I have a long restless night ahead of me.

Please keep me in your prayers, that this pain will quickly subside.

Thank you.

Kevin

- Posted using BlogPress from my iPhone

Surgery went well

Kev's surgery was succesful with no complications. Some more info on
the blog.

Roni
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Sent from my iPhone.