More to go...
The first big prayer to be answered is that our health insurance has said they will pay for my ALL of my surgery and hospital expenses in DC. We were worried about this because Dr. Sugarbaker does not take Oxford, so we would have gone to him "out of network", which meant that after paying co-pay and deductibles, the insurance would only have paid 70% of what "they" deem to be fair and reasonable. That means we could have been looking at a bill in the tens of thousands. But Baruch HaShem, that is one worry off of our plates.
What to pray for now?
1) That the ileostomy will be reversed during the surgery
2) That since the chemo, the cancer would have been reduced and the Dr. will be able to clean it all out.
3) For a quick and complete recovery
4) For G-d's shalom to be felt in a real way in our family. This cancer doesn't effect only me, but my family, Roni's family and our spiritual family.
Finally, I would like to once again thank EVERYONE! Thank you for your prayers. Thank you for your fellowship. Thank you for your encouraging cards and emails. Thank you for the dinners and lunches you paid for. Thank you for the love and concern you show to Roni and me. I will never be able to repay you for all that you have done, but know this, I will repay by showing the same love and concern to others that are going through this terrible disease.
Shalom v'ahavah
Kevin
Thursday, January 29, 2004
Wednesday, January 28, 2004
Born to Be Wild
There's a saying that only bikers understand why dogs stick their heads out of car windows. On July 4, 2002 we hit the road on a brand new Harley and discovered the amazing freedom of a loose intinerary, the wind in our faces and the road stretching before us.
Our 10-day road trip took us first to Arcadia National Park on the coast of Maine, through the largely unpopulated interior of Maine, to the countryside of Quebec province and back home — crossing the NY/Ontario border at 1,000 Islands. We covered 2,400 miles through quaint towns, picturesque farmlands and mountain wilderness. We had a fabulous time affirming our mutual love for travel and adventure.
Click here for pics.
Our 10-day road trip took us first to Arcadia National Park on the coast of Maine, through the largely unpopulated interior of Maine, to the countryside of Quebec province and back home — crossing the NY/Ontario border at 1,000 Islands. We covered 2,400 miles through quaint towns, picturesque farmlands and mountain wilderness. We had a fabulous time affirming our mutual love for travel and adventure.
Click here for pics.
Tuesday, January 27, 2004
These Are the Days
July 12, 2003 We decided to finally formalize our commitments to the faith we practice — Two-Testament (also known as Messianic) Judaism. I (Roni) officially converted and Kevin, who had not had a Bar Mitzvah ceremony as a boy, decided he wanted to publicly declare his commitment to being a "son of the commandment" (literal translation of Bar Mitzvah). Afterwards, we of course had a party, celebrating with family and friends at a Middle Eastern restaurant.
At times, cancer and treatment seems to overshadow everything. That's when we remind ourselves that this is a season of life and that we've been blessed with seasons of pleasure and delight. Life is weathering the harsh winters and frolicking in carefree summers, but even in the winters of life there are pleasures and comforts.
Click here to see some selected photos.
At times, cancer and treatment seems to overshadow everything. That's when we remind ourselves that this is a season of life and that we've been blessed with seasons of pleasure and delight. Life is weathering the harsh winters and frolicking in carefree summers, but even in the winters of life there are pleasures and comforts.
Click here to see some selected photos.
Monday, January 26, 2004
Bouncing Back; Looking Ahead
After a week spent mostly in bed recovering from chemo infusion, back to work today. Next treatment: "MOAS"*
*The Mother of All Surgeries
I keep telling myself, "2 months from now, and I'll be home recovering". I'm trying to look forward to the recovery part instead of the surgery part.
I went to my oncologist today for another blood test. My cell counts and hemoglobins and such are going back up, so I didn't need a shot of anything today. I'm still tired but at least made it into work for most of the day. While I was at the doctors', the office manager there said that the insurance co. called them again for more information. My oncologist told them that they needed an oncologist to review the paperwork, so at least he is fighting for us in battle. The office manager said that she believes it is about 70% approved so far (not that I put much faith in percentages. :-))
I haven't been to the gym in about a week. Just too wiped out from the Oxaliplatin. Hope to get back on schedule tomorrow. When I do go to the gym, I do some weights, and about 30 mins on either the treadmill or the "elliptical" trainer. Other than the fatigue I am feeling fine. Looking forward to the day when I am whole and well and feeling great.
*The Mother of All Surgeries
I keep telling myself, "2 months from now, and I'll be home recovering". I'm trying to look forward to the recovery part instead of the surgery part.
I went to my oncologist today for another blood test. My cell counts and hemoglobins and such are going back up, so I didn't need a shot of anything today. I'm still tired but at least made it into work for most of the day. While I was at the doctors', the office manager there said that the insurance co. called them again for more information. My oncologist told them that they needed an oncologist to review the paperwork, so at least he is fighting for us in battle. The office manager said that she believes it is about 70% approved so far (not that I put much faith in percentages. :-))
I haven't been to the gym in about a week. Just too wiped out from the Oxaliplatin. Hope to get back on schedule tomorrow. When I do go to the gym, I do some weights, and about 30 mins on either the treadmill or the "elliptical" trainer. Other than the fatigue I am feeling fine. Looking forward to the day when I am whole and well and feeling great.
Recommended Reading
Inspirational Reading for those facing cancer
Journey into Day — Meditations for New Cancer Patients by Rusty Freeman (Also great for people who love cancer patients). This book has short little meditations from someone who knows first-hand the spiritual, physical and emotional journey of dealing with cancer. No fluffy platitudes here--examples of topics are: "A Prayer for G-d's Protection" "Assuming the Worst" "Why God" "Chemotherapy Day" "When God Says No" "No Magic Formulas" and "The Lord Gives Strength"
Love Is a Journey: Couples Facing Cancer by Jan Latona, Ph.D. and Gary J. Stricklin, Ph.D.
Journey into Day — Meditations for New Cancer Patients by Rusty Freeman (Also great for people who love cancer patients). This book has short little meditations from someone who knows first-hand the spiritual, physical and emotional journey of dealing with cancer. No fluffy platitudes here--examples of topics are: "A Prayer for G-d's Protection" "Assuming the Worst" "Why God" "Chemotherapy Day" "When God Says No" "No Magic Formulas" and "The Lord Gives Strength"
Love Is a Journey: Couples Facing Cancer by Jan Latona, Ph.D. and Gary J. Stricklin, Ph.D.
Keeping the Faith
Some things that inspire us.
Kol HaOlam Kulo
R’Nachman / Chait 19 Kol Ha'olam Kulo.m4a
Kol ha-olam ku-lo gesher tsar me-ohd
All of the world (universe) entire is a very narrow bridge;
Gesher tsar me-ohd, gesher tsar me-ohd
Kol ha-olam ku-lo gesher tsar me-ohd; Gesher tsar me-ohd.
Ve-ha-ee-kar, ve-ha-ee-kar lo l’fa-khed, lo l’fa-khed k’lal.
but the main thing is not to dwell in fear.
Ve-ha-ee-kar, ve-ha-ee-kar lo l’fa-khed k’lal.
declaration.pdf
L’Chaim
By Roni Kersey 11/8/03
Dying is the easiest. After all, it’s the ultimate path of least resistance.
Surviving is harder. It requires a refusal to “go gentle into that good night.” It demands that you find courage in despair; that you summon uncommon strength from a body, mind and spirit that are under assault.
But living. That’s grueling. You have to somehow combine the fight for survival with purpose, joy, relationships, bills and laundry. And you have to do that every day, every moment. Realizing as you do, now more than ever, that this moment is all there is...
Choose life!
I received the following in an email and do not know the author. If anyone does know, please let me know.
The road to success is not straight. There is a curve called Failure, a loop called Confusion, speed bumps called Friends, red lights called Enemies, caution lights called Family. You will have flats called Jobs.
But, if you have a spare called Determination, an engine called Perseverance, insurance called Faith, a driver called God, you will make it to a place called Success.
odds.pdf
Kol HaOlam Kulo
R’Nachman / Chait 19 Kol Ha'olam Kulo.m4a
Kol ha-olam ku-lo gesher tsar me-ohd
All of the world (universe) entire is a very narrow bridge;
Gesher tsar me-ohd, gesher tsar me-ohd
Kol ha-olam ku-lo gesher tsar me-ohd; Gesher tsar me-ohd.
Ve-ha-ee-kar, ve-ha-ee-kar lo l’fa-khed, lo l’fa-khed k’lal.
but the main thing is not to dwell in fear.
Ve-ha-ee-kar, ve-ha-ee-kar lo l’fa-khed k’lal.
declaration.pdf
L’Chaim
By Roni Kersey 11/8/03
Dying is the easiest. After all, it’s the ultimate path of least resistance.
Surviving is harder. It requires a refusal to “go gentle into that good night.” It demands that you find courage in despair; that you summon uncommon strength from a body, mind and spirit that are under assault.
But living. That’s grueling. You have to somehow combine the fight for survival with purpose, joy, relationships, bills and laundry. And you have to do that every day, every moment. Realizing as you do, now more than ever, that this moment is all there is...
Choose life!
I received the following in an email and do not know the author. If anyone does know, please let me know.
The road to success is not straight. There is a curve called Failure, a loop called Confusion, speed bumps called Friends, red lights called Enemies, caution lights called Family. You will have flats called Jobs.
But, if you have a spare called Determination, an engine called Perseverance, insurance called Faith, a driver called God, you will make it to a place called Success.
odds.pdf
Tuesday, January 20, 2004
Second chemo infusion of Oxaliplatin today
By Roni
This is one of the two chemo drugs Kevin is on. The other he takes orally for 2 weeks, then has a week of rest. This one is given intravenously every three weeks. The major side affects are "pins and needles" in fingertips and in the arm that received the IV, sensitivity to cold (food and drinks have to be at room temperature or above), fatigue and sometimes nausea. So far, Kev has had very light nausea, not requiring any medication. His appetite is fair, though he mostly wants "comfort" food.
He's finding the "pins and needles," sensitivity to cold and sore throat more intense this time around. Also, his blood count had dropped to a level that's far enough below normal that they want him to come in tomorrow for a shot to treat that. Hopefully will help with fatigue.
Poor Kev, he HATES needles.
He will be working from home this week -- interspersed with naps no doubt. Last time around, the symptoms lasted about a week, and he spent quite a bit of that time in bed. He's being a non-complaining trooper. I'm giving him some extra TLC and "room service."
We met a woman today in the chemo room who is being treated for breast cancer. those drugs have the severe side affects one normally associates with chemo. Vomiting, etc. We're glad Kevin's drugs have less sever side affects. Our buddies on our online support groups remind us that drug reactions means the chemo is working! and urge Kevin to think, "Yea!, cancer cells are being killed!" whenever he feels lousy. It's a great idea, not sure it's so easy for him to implement. Helps me though! ;-) It's never fun seeing someone you care about feel lousy. At least i can bring him comfort food.
This is the last Oxaliplatin IV before the Feb. surgery, so he'll have a brief respite. He'll most likely resume the treatments once he's recovered enough from the surgery. We dream and pray for the day he'll be recovered from the surgery, through with chemo and back on his Harley! But for now, thank G-d for chocolate pudding and smashed potatoes!
This is one of the two chemo drugs Kevin is on. The other he takes orally for 2 weeks, then has a week of rest. This one is given intravenously every three weeks. The major side affects are "pins and needles" in fingertips and in the arm that received the IV, sensitivity to cold (food and drinks have to be at room temperature or above), fatigue and sometimes nausea. So far, Kev has had very light nausea, not requiring any medication. His appetite is fair, though he mostly wants "comfort" food.
He's finding the "pins and needles," sensitivity to cold and sore throat more intense this time around. Also, his blood count had dropped to a level that's far enough below normal that they want him to come in tomorrow for a shot to treat that. Hopefully will help with fatigue.
Poor Kev, he HATES needles.
He will be working from home this week -- interspersed with naps no doubt. Last time around, the symptoms lasted about a week, and he spent quite a bit of that time in bed. He's being a non-complaining trooper. I'm giving him some extra TLC and "room service."
We met a woman today in the chemo room who is being treated for breast cancer. those drugs have the severe side affects one normally associates with chemo. Vomiting, etc. We're glad Kevin's drugs have less sever side affects. Our buddies on our online support groups remind us that drug reactions means the chemo is working! and urge Kevin to think, "Yea!, cancer cells are being killed!" whenever he feels lousy. It's a great idea, not sure it's so easy for him to implement. Helps me though! ;-) It's never fun seeing someone you care about feel lousy. At least i can bring him comfort food.
This is the last Oxaliplatin IV before the Feb. surgery, so he'll have a brief respite. He'll most likely resume the treatments once he's recovered enough from the surgery. We dream and pray for the day he'll be recovered from the surgery, through with chemo and back on his Harley! But for now, thank G-d for chocolate pudding and smashed potatoes!
Thursday, January 15, 2004
Encouraging Results with New Chemo
We keep in touch with a network of people who have either survived PMP (the umbrella disease Kevin has (see Mom's questions about PMP blog posting) via a list serve and a Web site. The following thread excerpts report that some are having great success with one of the chemo drugs Kevin is on. I hope you find it as encouraging as I do.
If you'd like to check out the Web site, the URL is at the very end.
_________________________________________________
Author
Subject: My Dad Was Just De-Bulked...
Jeff
Posted At 14:20:11 01/02/2004
Hi Everyone,
Glad I found this web site. The first part of August my Dad went in for a colonoscopy after having some discomfort on his left side. The colonoscopy revealed a tumor up by the right colon.
Surgery was scheduled for the next week. When the surgeon opened him up he discovered cancer was throughout the abdominal area and closed him back up - saying he couldn't remove anything. Basically told us to bring him home to die.
Luckily the internist contacted a very good oncologist. My Dad went through 7 sessions of chemo consisting 5FU, oxaliplatin and leucovorin.
During this time the oncologist was trying to find a surgeon in the area that had experience with de-bulking.
After a cat scan the middle of November showed the main tumor had not grown any the oncologist decided it was time for the de-bulking.
So on December 12th my Dad had his right colon, transverse colon, appendix and omentum removed. Or as some have said "The Mother of All Surgeries!"
During the surgery it was discovered that more than likely it was appendix cancer. Signet - Ring Cell type. [What Kevin has along with PMP] They were able to get all visible signs of it with the exception of some that was sitting on the outside of the small intestine around the blood supply.
Remarkably the pathology reports came back that the cancer was dead. They could not even find enough living cancer to send out for chemo sensitivity testing. The oncologist is giving praise to the some what new chemo oxaliplatin [Kevin has his second round of this drug, which is infused on Monday. He will then have a month of rest from chemo prior to surgery and resume oxaliplatin treatments after he has sufficiently recovered from the operation.]
Once he is recovered he will begin another 6 sessions of the chemos that he was on before surgery.
As with most of you he had no symptoms. The left side discomfort was actually diverticulitis. His blood was good with the exception of being slightly anemic. He had not lost appetite or lost any weight.
This has been some journey! He went from feeling fine - to - you have terminal cancer with weeks to live - to - we think we can control it - to - we think we can remove it - to - we removed it and it is dead and with treatment we think you probably have years to live...
Jeff
Bridget
Re: My Dad Was Just De-Bulked... (Currently 1 replies)
Posted At 15:21:37 01/02/2004
WOW!! Great news! My husband, Tom, is going thru this same thing. Appendix cancer, signet-ring, spreading etc. He has been taking the same chemo treatment as your Dad and we are going to see Dr Sugarbaker Jan 12th to try and get surgery. We are so excited to hear the cells were dead. Oxyplatnim is so new maybe they are just finding out it can kill this!! Who was your Doctor? Give your Dad and hug for us. This news gives us lots of hope!!
Thanks!
Bridget
d
Re: My Dad Was Just De-Bulked... (Currently 0 replies)
Posted At 20:57:54 01/03/2004
we have a friend in town who had colon cancer and was given 12 mo. to live. he had surgery and is now taking oxilplatin chemo with another , not sure what, and the ct scans show the tumors in his liver are almost gone. the dr.s are amazed. dr. zeh, who works with dr. bartlett in pittsburg, was thinking of using oxilplatin instead of the standard mitomicin c during the heated chemo during surgery. interesting......God bless and take care.d
_______________________________________________________________________________
Message board portion of the site: http://www.cyberhideaway.com/forums/cancersupport/
Main page with lots of good links: http://cyberhideaway.com/BriansStory/
If you'd like to check out the Web site, the URL is at the very end.
_________________________________________________
Author
Subject: My Dad Was Just De-Bulked...
Jeff
Posted At 14:20:11 01/02/2004
Hi Everyone,
Glad I found this web site. The first part of August my Dad went in for a colonoscopy after having some discomfort on his left side. The colonoscopy revealed a tumor up by the right colon.
Surgery was scheduled for the next week. When the surgeon opened him up he discovered cancer was throughout the abdominal area and closed him back up - saying he couldn't remove anything. Basically told us to bring him home to die.
Luckily the internist contacted a very good oncologist. My Dad went through 7 sessions of chemo consisting 5FU, oxaliplatin and leucovorin.
During this time the oncologist was trying to find a surgeon in the area that had experience with de-bulking.
After a cat scan the middle of November showed the main tumor had not grown any the oncologist decided it was time for the de-bulking.
So on December 12th my Dad had his right colon, transverse colon, appendix and omentum removed. Or as some have said "The Mother of All Surgeries!"
During the surgery it was discovered that more than likely it was appendix cancer. Signet - Ring Cell type. [What Kevin has along with PMP] They were able to get all visible signs of it with the exception of some that was sitting on the outside of the small intestine around the blood supply.
Remarkably the pathology reports came back that the cancer was dead. They could not even find enough living cancer to send out for chemo sensitivity testing. The oncologist is giving praise to the some what new chemo oxaliplatin [Kevin has his second round of this drug, which is infused on Monday. He will then have a month of rest from chemo prior to surgery and resume oxaliplatin treatments after he has sufficiently recovered from the operation.]
Once he is recovered he will begin another 6 sessions of the chemos that he was on before surgery.
As with most of you he had no symptoms. The left side discomfort was actually diverticulitis. His blood was good with the exception of being slightly anemic. He had not lost appetite or lost any weight.
This has been some journey! He went from feeling fine - to - you have terminal cancer with weeks to live - to - we think we can control it - to - we think we can remove it - to - we removed it and it is dead and with treatment we think you probably have years to live...
Jeff
Bridget
Re: My Dad Was Just De-Bulked... (Currently 1 replies)
Posted At 15:21:37 01/02/2004
WOW!! Great news! My husband, Tom, is going thru this same thing. Appendix cancer, signet-ring, spreading etc. He has been taking the same chemo treatment as your Dad and we are going to see Dr Sugarbaker Jan 12th to try and get surgery. We are so excited to hear the cells were dead. Oxyplatnim is so new maybe they are just finding out it can kill this!! Who was your Doctor? Give your Dad and hug for us. This news gives us lots of hope!!
Thanks!
Bridget
d
Re: My Dad Was Just De-Bulked... (Currently 0 replies)
Posted At 20:57:54 01/03/2004
we have a friend in town who had colon cancer and was given 12 mo. to live. he had surgery and is now taking oxilplatin chemo with another , not sure what, and the ct scans show the tumors in his liver are almost gone. the dr.s are amazed. dr. zeh, who works with dr. bartlett in pittsburg, was thinking of using oxilplatin instead of the standard mitomicin c during the heated chemo during surgery. interesting......God bless and take care.d
_______________________________________________________________________________
Message board portion of the site: http://www.cyberhideaway.com/forums/cancersupport/
Main page with lots of good links: http://cyberhideaway.com/BriansStory/
Wednesday, January 14, 2004
Mark Buchanan’s Story
On a support group that Roni and I belong to, a friend from Australia posted a story about a friend he had that lost his fight with cancer. Some might find it discouraging, but I found it a great story of someone’s battle with cancer, and how he lived life to the fullest in the time he had. You'll need tissues.
Hello all
I wanted to share a story about my very good friend Mark Buchanan from Brisbane who very recently lost his fight with PMP.
It will be cathartic for me and I believe this is a story of hope rather than of failure and is a testament to a bloke who became a really good mate - through sharing something that neither of us wanted.
I first met Mark through the wonderful Brian's Story web site. I had posted to the guest book (and before this group it was the only way for us foreigners to keep abreast of what is happening in other parts of the world). I have also made some wonderful friends through Brian's Story, a number of whom have made their way to this group.
Mark had, like many of us just been diagnosed with this rare disease that he, and his doctors knew bugger all about. Because I was also in Australia, Mark e-mailed me and I provided what information I could about the disease and how it might be treated. I was about 6 months post surgery at that stage.
Unfortunately for Mark, he had been misdiagnosed for nearly 12 years. Mark was told repeatedly that he was suffering from irritable bowel syndrome, that it was stress related and that his problems might be at least partly psychosomatic. Mark's belly got bigger with the ascites, but (as in my case) it was put down to middle age spread. When PMP was finally diagnosed (as is often the case) Mark and his fantastic wife Jenny knew more about the disease than their doctor. I talked with Jenny on a number of occasions on the phone during these stages about what Mark could do.
Mark was a stubborn bastard (in Australia this is a big compliment so please don't get offended) who wanted to prove all the doctors wrong. They were willing to travel to Perth (equivalent to going from New York to LA) to have treatment with my doctor Stephen Archer if required. Their Brisbane oncologist even rang me directly to get information. I was having lunch with the staff for the Minister for Fisheries in a Japanese restaurant when the phone rang. I thought it was a gag at first, but we had a lesson in PMP 101 while I munched on sushi.
Mark started to run into difficulties with surgeons shying away from operating. The disease was very advanced and Mark was being written off by the medical fraternity. Needless to say Mark was very frustrated and angry with this treatment. He was making plans to come to Perth when he was put in touch with an oncologist in NSW who had some experience with the disease. Eventually, the Buchanans found Professor David Morris at St George hospital who agreed to undertake the necessary surgery. This was in late 2001. Most doctors had said that Mark wouldn't see 2002.
Mark had the usual clean out, but because the disease was so advanced, Mark lost a lot more than most of us. Mark jumped straight to an ileostomy bag as they took out so much of his intestine which was diseased. The prognosis was extremely poor and Mark knew it but he was determined to prove the doctors wrong and to do his bit for medical science.
Just before Mark's surgery we were both contacted by another person in Brisbane who was diagnosed with PMP. The disease was also pretty advanced and the prognosis was only average. This guy decided not to have surgery as he couldn't afford the time off work and his wife needed him to help out with her business. Last we heard from him a month later was that he was already on a morphine drip and it was only a few weeks later that he passed away. Both Mark and I felt sad but this guy made his choices and the consequences with PMP are pretty certain if it is not corrected....
Mark had worked in the Australian Air Force (and in the ain't it a small world theme one of his bosses was a University friend of mine) and had been exposed to beryllium and other chemicals while working on fighter jets. During my discussions with PMP Pals it is exposure to chemicals (especially agricultural ones) that is one of the few recurring factors with PMP (I worked in a brick factory with stuff like chromic acid and on fish hatcheries with lots of chemicals now considered strongly carcinogenic). Mark used his fight with the Air Force to muster his strength. We both knew he wasn't going to be able to win, but it kept a focus on staying as healthy as possible. In the end, the Air Force did make a payout out of court and were very supportive throughout Mark's ordeal, even though he had already left the Air Force when diagnosed.
Mark plateaued and I was lucky to be at a conference on the Gold Coast south of Brisbane and met up with Mark and his family for dinner. We shocked the entire Casino dining room by taking a photo of both of us showing off our scars. It might have affected their buffet sales but Mark kept boasting that he had had more staples and more drains than me so I challenged him. He won.
I also met Jenny and their daughter Kylie and son-in-law Nelson. Jenny was and still is, the rock upon which Mark based his fight. One of the most important factors in a successful fight against this disease is to have a strong support network. All the people who I know who have been fighting for a long time (and with remarkably good cheer), have had a loving, strong and supportive partner (or parents). This takes the pressure off those of us who in many ways have it easy. We do thank you, even if it isn't often enough with words.
Mark also had his biker mates and their annual trip to get away from it all. These guys even held a wake for Mark so that he could enjoy a big piss up (Aussie slang again) in his honour.
When you make up your mind that you are going to fight this thing as hard as you possibly can, you actually have very limited choices to make. It is our loved ones who have to worry about the 'what ifs' and who agonise over the test results. For those of us in the fight, it is all about going in the right direction and fighting like buggery.
Anyway, Mark lost weight and continued to suffer symptoms associated with PMP. There was more surgery and more complications but each and every time he met the challenges with grit and determination that defied medical opinion and acted as an inspiration to mere mortals like me. Jenny and I actually talked more because keeping Mark focussed was our major task and he continued to surprise us all with his strength, wicked humour and determination.
During this time Kylie announced that she was pregnant and would present Mark with his first grandchild. This became Mark's focus as he really wanted to see this baby. In about October 2003 Mark and Jenny decided to take their caravan down to Sydney for more tests with Professor Morris before the baby was due.
Things went from bad to worse and by the time they got close to Sydney, Mark was in a coma and rushed to hospital. Eventually they got Mark to ST George hospital with more complications than a Royal wedding and things were looking bad. Blood clots in the lungs and liver failure were the two biggest threats. I got the call from Jenny that things were barely hanging on and didn't look too good. Kylie hadn't yet had the baby and this was really stressing Mark out. I sent flowers with a message to tell him that he was a better fighter than Ali. They patched up his heart and liver and Mark went from orange to his more natural pallor.
Kylie gave birth to Olivia, a beautiful and extremely special baby and Mark was able to cuddle his granddaughter who immediately took to the old bastard. St George hospital wanted Mark to stay in palliative care, but determined Mark wanted to go home to Brisbane.
QANTAS arranged the flight but Jenny almost missed the plane due to a pair of surgical scissors which were in her handbag and some very unsympathetic security guards. Mark, drugged to the eyeballs, was apparently in the plane telling them they couldn't take off until Jenny got on.
Stick-like and full of drugs, Mark made it back to Brisbane. I was able to visit him with my family on Friday night 12 December as part of our Christmas east coast tour. We talked about important things and absolute rubbish. Mark was very weak, but Jenny, Kylie and Nelson were extremely strong. Olivia was an absolute dream and we cherish the photos of Mark and Olivia. Mark was weak and secondaries in his lungs were greatly affecting him. We gave each other a big hug when I said goodbye. Mark wanted me to stay as he promised to have better day the next day.
I got the phone message from Jenny on Sunday morning. We were driving up through some rainforest hills which were covered in beautiful mist. It was peaceful and the right place to hear about Mark's passing. I really do miss him.
I flew up for a wonderful funeral. All Mark's bikie mates were there as a guard of hour - wearing their special t-shirts and acting like well behaved people who refuse to believe what anybody - doctor, lawyer or minister told them without making sure it wasn't just plain bull - just like Mark lived his life.
It was sad to see someone who was so very brave and determined lose their fight against PMP. Selfishly, I feel lonely and humbled that I will be able to meet my future challenges with as much courage and strength as my mate Mark.
Mark knew he was going to die from the disease eventually. He didn't blame the doctors who didn't check well enough - that was looking backwards. Except for his fight with the Air Force which helped to give him strength, Mark refused to look back - only forward to see what was required to get over the next hurdle that was put in front of him. Mark didn't have much luck with his disease, but even though they took most of them out - he had more guts than anybody I know and was loved by many people.
Even though Jenny was completely busy with Mark, she managed to pull strings to get me to see Professor Morris in Sydney just before Christmas. I saw him the morning I flew to Brisbane for Mark's funeral. I took 'Prof' and his wonderful secretary Linda some flowers on behalf of Mark's family in thanks for all they had done and for agreeing to see me. My news was ok - the tumour appears to be back but isn't growing so no more surgery until it starts up again.
While this seems a very sad story. Mark and I have both had to confront our mortality in a way that neither of us asked for. When I asked him what it felt like to know how it was going to end (which in his case was pretty certain) he said that he was a lucky man. All the doctors told him he would be dead by 2002 so he had two whole years that were a bonus. He could live each day to the fullest and appreciate it for the blessing that it was. He did the things he wanted to do before he got sick - he even got to get drunk at his own wake. Mark believed that there are millions of people who are too busy getting by to actually live. They promise the wife and kids a trip away which always stays 'tomorrow'. Then they drop dead from a heart attack without any of those things having been done.
Mark has taught me that life is a precious gift which must be grasped by both hands and spent to get the best possible use from it. Mark, I love you man and really do miss you. I know that you will be there to greet me when my time comes.
To all the rest of you that PMP has touched in some way, please remember Mark Buchanan fondly, he is one of the good ones and let's do our best to prove the statistics are wrong and that human nature, love and support can make a real difference in beating this thing.
Frank P.
Australia
Hello all
I wanted to share a story about my very good friend Mark Buchanan from Brisbane who very recently lost his fight with PMP.
It will be cathartic for me and I believe this is a story of hope rather than of failure and is a testament to a bloke who became a really good mate - through sharing something that neither of us wanted.
I first met Mark through the wonderful Brian's Story web site. I had posted to the guest book (and before this group it was the only way for us foreigners to keep abreast of what is happening in other parts of the world). I have also made some wonderful friends through Brian's Story, a number of whom have made their way to this group.
Mark had, like many of us just been diagnosed with this rare disease that he, and his doctors knew bugger all about. Because I was also in Australia, Mark e-mailed me and I provided what information I could about the disease and how it might be treated. I was about 6 months post surgery at that stage.
Unfortunately for Mark, he had been misdiagnosed for nearly 12 years. Mark was told repeatedly that he was suffering from irritable bowel syndrome, that it was stress related and that his problems might be at least partly psychosomatic. Mark's belly got bigger with the ascites, but (as in my case) it was put down to middle age spread. When PMP was finally diagnosed (as is often the case) Mark and his fantastic wife Jenny knew more about the disease than their doctor. I talked with Jenny on a number of occasions on the phone during these stages about what Mark could do.
Mark was a stubborn bastard (in Australia this is a big compliment so please don't get offended) who wanted to prove all the doctors wrong. They were willing to travel to Perth (equivalent to going from New York to LA) to have treatment with my doctor Stephen Archer if required. Their Brisbane oncologist even rang me directly to get information. I was having lunch with the staff for the Minister for Fisheries in a Japanese restaurant when the phone rang. I thought it was a gag at first, but we had a lesson in PMP 101 while I munched on sushi.
Mark started to run into difficulties with surgeons shying away from operating. The disease was very advanced and Mark was being written off by the medical fraternity. Needless to say Mark was very frustrated and angry with this treatment. He was making plans to come to Perth when he was put in touch with an oncologist in NSW who had some experience with the disease. Eventually, the Buchanans found Professor David Morris at St George hospital who agreed to undertake the necessary surgery. This was in late 2001. Most doctors had said that Mark wouldn't see 2002.
Mark had the usual clean out, but because the disease was so advanced, Mark lost a lot more than most of us. Mark jumped straight to an ileostomy bag as they took out so much of his intestine which was diseased. The prognosis was extremely poor and Mark knew it but he was determined to prove the doctors wrong and to do his bit for medical science.
Just before Mark's surgery we were both contacted by another person in Brisbane who was diagnosed with PMP. The disease was also pretty advanced and the prognosis was only average. This guy decided not to have surgery as he couldn't afford the time off work and his wife needed him to help out with her business. Last we heard from him a month later was that he was already on a morphine drip and it was only a few weeks later that he passed away. Both Mark and I felt sad but this guy made his choices and the consequences with PMP are pretty certain if it is not corrected....
Mark had worked in the Australian Air Force (and in the ain't it a small world theme one of his bosses was a University friend of mine) and had been exposed to beryllium and other chemicals while working on fighter jets. During my discussions with PMP Pals it is exposure to chemicals (especially agricultural ones) that is one of the few recurring factors with PMP (I worked in a brick factory with stuff like chromic acid and on fish hatcheries with lots of chemicals now considered strongly carcinogenic). Mark used his fight with the Air Force to muster his strength. We both knew he wasn't going to be able to win, but it kept a focus on staying as healthy as possible. In the end, the Air Force did make a payout out of court and were very supportive throughout Mark's ordeal, even though he had already left the Air Force when diagnosed.
Mark plateaued and I was lucky to be at a conference on the Gold Coast south of Brisbane and met up with Mark and his family for dinner. We shocked the entire Casino dining room by taking a photo of both of us showing off our scars. It might have affected their buffet sales but Mark kept boasting that he had had more staples and more drains than me so I challenged him. He won.
I also met Jenny and their daughter Kylie and son-in-law Nelson. Jenny was and still is, the rock upon which Mark based his fight. One of the most important factors in a successful fight against this disease is to have a strong support network. All the people who I know who have been fighting for a long time (and with remarkably good cheer), have had a loving, strong and supportive partner (or parents). This takes the pressure off those of us who in many ways have it easy. We do thank you, even if it isn't often enough with words.
Mark also had his biker mates and their annual trip to get away from it all. These guys even held a wake for Mark so that he could enjoy a big piss up (Aussie slang again) in his honour.
When you make up your mind that you are going to fight this thing as hard as you possibly can, you actually have very limited choices to make. It is our loved ones who have to worry about the 'what ifs' and who agonise over the test results. For those of us in the fight, it is all about going in the right direction and fighting like buggery.
Anyway, Mark lost weight and continued to suffer symptoms associated with PMP. There was more surgery and more complications but each and every time he met the challenges with grit and determination that defied medical opinion and acted as an inspiration to mere mortals like me. Jenny and I actually talked more because keeping Mark focussed was our major task and he continued to surprise us all with his strength, wicked humour and determination.
During this time Kylie announced that she was pregnant and would present Mark with his first grandchild. This became Mark's focus as he really wanted to see this baby. In about October 2003 Mark and Jenny decided to take their caravan down to Sydney for more tests with Professor Morris before the baby was due.
Things went from bad to worse and by the time they got close to Sydney, Mark was in a coma and rushed to hospital. Eventually they got Mark to ST George hospital with more complications than a Royal wedding and things were looking bad. Blood clots in the lungs and liver failure were the two biggest threats. I got the call from Jenny that things were barely hanging on and didn't look too good. Kylie hadn't yet had the baby and this was really stressing Mark out. I sent flowers with a message to tell him that he was a better fighter than Ali. They patched up his heart and liver and Mark went from orange to his more natural pallor.
Kylie gave birth to Olivia, a beautiful and extremely special baby and Mark was able to cuddle his granddaughter who immediately took to the old bastard. St George hospital wanted Mark to stay in palliative care, but determined Mark wanted to go home to Brisbane.
QANTAS arranged the flight but Jenny almost missed the plane due to a pair of surgical scissors which were in her handbag and some very unsympathetic security guards. Mark, drugged to the eyeballs, was apparently in the plane telling them they couldn't take off until Jenny got on.
Stick-like and full of drugs, Mark made it back to Brisbane. I was able to visit him with my family on Friday night 12 December as part of our Christmas east coast tour. We talked about important things and absolute rubbish. Mark was very weak, but Jenny, Kylie and Nelson were extremely strong. Olivia was an absolute dream and we cherish the photos of Mark and Olivia. Mark was weak and secondaries in his lungs were greatly affecting him. We gave each other a big hug when I said goodbye. Mark wanted me to stay as he promised to have better day the next day.
I got the phone message from Jenny on Sunday morning. We were driving up through some rainforest hills which were covered in beautiful mist. It was peaceful and the right place to hear about Mark's passing. I really do miss him.
I flew up for a wonderful funeral. All Mark's bikie mates were there as a guard of hour - wearing their special t-shirts and acting like well behaved people who refuse to believe what anybody - doctor, lawyer or minister told them without making sure it wasn't just plain bull - just like Mark lived his life.
It was sad to see someone who was so very brave and determined lose their fight against PMP. Selfishly, I feel lonely and humbled that I will be able to meet my future challenges with as much courage and strength as my mate Mark.
Mark knew he was going to die from the disease eventually. He didn't blame the doctors who didn't check well enough - that was looking backwards. Except for his fight with the Air Force which helped to give him strength, Mark refused to look back - only forward to see what was required to get over the next hurdle that was put in front of him. Mark didn't have much luck with his disease, but even though they took most of them out - he had more guts than anybody I know and was loved by many people.
Even though Jenny was completely busy with Mark, she managed to pull strings to get me to see Professor Morris in Sydney just before Christmas. I saw him the morning I flew to Brisbane for Mark's funeral. I took 'Prof' and his wonderful secretary Linda some flowers on behalf of Mark's family in thanks for all they had done and for agreeing to see me. My news was ok - the tumour appears to be back but isn't growing so no more surgery until it starts up again.
While this seems a very sad story. Mark and I have both had to confront our mortality in a way that neither of us asked for. When I asked him what it felt like to know how it was going to end (which in his case was pretty certain) he said that he was a lucky man. All the doctors told him he would be dead by 2002 so he had two whole years that were a bonus. He could live each day to the fullest and appreciate it for the blessing that it was. He did the things he wanted to do before he got sick - he even got to get drunk at his own wake. Mark believed that there are millions of people who are too busy getting by to actually live. They promise the wife and kids a trip away which always stays 'tomorrow'. Then they drop dead from a heart attack without any of those things having been done.
Mark has taught me that life is a precious gift which must be grasped by both hands and spent to get the best possible use from it. Mark, I love you man and really do miss you. I know that you will be there to greet me when my time comes.
To all the rest of you that PMP has touched in some way, please remember Mark Buchanan fondly, he is one of the good ones and let's do our best to prove the statistics are wrong and that human nature, love and support can make a real difference in beating this thing.
Frank P.
Australia
Fighting Cancer - Part I
How does one “fight” cancer?
There are different stages to having cancer. One of the stages is fighting cancer. This is the stage I am in now.
How does one “fight” cancer? First of all, you need a team. My team consists of family, friends and doctors. The first member of my team is my wife. Without her, I would be lost. She is the one who takes the notes, calls the insurance company and is there for me when I’m down. She is there when I need to talk, or when I just need time to myself.
The other family members on my team consist of my parents, my siblings, their spouses, kids, my in-laws and others. While these members of my team may not live close by, they are always a phone call away. They also help by sending emails and cards. Family members are an important part of my team. They are the backbone of my team
Then comes friends. There are different parts of this team. One part is from my shul. These people could also be considered my spiritual family. My Rabbi and his wife have been the greatest. They were there for Roni when I went into emergency surgery. They were there to visit me in the hospital and they were there to comfort us after we received the news that I had cancer. The other members of my shul have been there to pray for us, visit us and help us out when we needed it.
The second part of my “friends” team consist of my friends at work. A couple of major players there are my old boss, Mitch Klaif and my current boss, Jeff Fulton. They have been great is supporting both Roni and me during this time and assuring us that my job is safe. They have both been amazing. Mitch even called to talk to my wife to let her know that they are supporting me. Jeff has been great in letting me work from home, take the time I need for doctors visits and even take things easy when I need to. Other friends from work consist of Frank, who rode my bike from where I left it and stored it in his friend’s house for about a month or so. There is Al, who went through his own fight with cancer. He has been a great person to talk to and listen to. Others at work have always taken the time to listen and give me all the moral support I need.
The next part of my “friends” team are bikers. Those I ride with and those I know from internet on-line forums. The guys from the HOG chapter I ride with have offered to help Roni and me anyway they can. Vinny, the director of NYC HOG, even spent a whole half a day picking up my bike from one place up north and taking it to his house to store it there. He even called a few times out of the blue just to check up on things and see how we were doing. The online community has also been there. People I have never met in person, offering moral support and their prayers have been humbling.
The last group of my friends are those cancer fighters who are part of my support group. This consists of those who are cancer patients and cancer care-givers. People like Steph, Wen, Pat, Frank, etc. have all been great in offering support and advice. This group of friends have gone through, or continue to go through what Roni and I are going through now. The fact that they are still around is an encouragement to me to keep fighting this terrible disease.
The third part of my team consist of my doctors. There is Dr. Bernstein, our family doctor. He was the one who encouraged us to transfer from the city hospital ER and go to St. Lukes//Roosevelt. He also had the ER staff ready for us when we showed up and even had the surgeon picked out to do the surgery. That brings me to the surgeon who performed the emergency surgery on me, Dr. Wishner. He spent three hours operating on me, and cleaning out the infection that had occurred due to my perforated bowels. He basically saved my life. Dr. Wishner was always available with any questions we had, and even very sympathetic when he gave us the bad news about the cancer.
Then there are the cancer specialists. The first is Dr. Richard Warner. Dr. Warner is a specialist in carcinoid tumors, the type of cancer that we first thought I had. He helped us confirm the diagnosis and pointed us to our oncologist, Dr. Ratner. Dr. Ratner has guided us in our fight and has taken the time to do the research with this rare form of cancer, and even reached out to others that we asked him to. Most specifically, Dr. Paul Sugarbaker. Dr. Sugarbaker is the final member of my medical team. He is the specialist in dealing with this form of cancer and will be performing the lengthy surgery to remove the cancer. We have only met with him once, but even the fact that he met with us says that he thinks he can help me.
Then there are the people who we never met. People who are friends of our family that are praying for us. People who send me cards and notes saying they are praying for me and have never even met me. That just amazes me.
Finally, there is the spiritual world. G-d has been the anchor that has kept us during this ordeal. He has been with us every step of the way, and looking back, we can see how he has guided us and kept us. His word has been a source of inspiration. He has been there when Roni and I had nothing left but tears. Without G-d, I don’t know how I would ever survive this.
There are a lot of people on my team. I could never begin to thank them enough for all they have done. I will always be in their debt for the love, concern and support that they all have shown to my wife and me.
Another part of having cancer is surviving. I’ll write more about that when I start that phase.
There are different stages to having cancer. One of the stages is fighting cancer. This is the stage I am in now.
How does one “fight” cancer? First of all, you need a team. My team consists of family, friends and doctors. The first member of my team is my wife. Without her, I would be lost. She is the one who takes the notes, calls the insurance company and is there for me when I’m down. She is there when I need to talk, or when I just need time to myself.
The other family members on my team consist of my parents, my siblings, their spouses, kids, my in-laws and others. While these members of my team may not live close by, they are always a phone call away. They also help by sending emails and cards. Family members are an important part of my team. They are the backbone of my team
Then comes friends. There are different parts of this team. One part is from my shul. These people could also be considered my spiritual family. My Rabbi and his wife have been the greatest. They were there for Roni when I went into emergency surgery. They were there to visit me in the hospital and they were there to comfort us after we received the news that I had cancer. The other members of my shul have been there to pray for us, visit us and help us out when we needed it.
The second part of my “friends” team consist of my friends at work. A couple of major players there are my old boss, Mitch Klaif and my current boss, Jeff Fulton. They have been great is supporting both Roni and me during this time and assuring us that my job is safe. They have both been amazing. Mitch even called to talk to my wife to let her know that they are supporting me. Jeff has been great in letting me work from home, take the time I need for doctors visits and even take things easy when I need to. Other friends from work consist of Frank, who rode my bike from where I left it and stored it in his friend’s house for about a month or so. There is Al, who went through his own fight with cancer. He has been a great person to talk to and listen to. Others at work have always taken the time to listen and give me all the moral support I need.
The next part of my “friends” team are bikers. Those I ride with and those I know from internet on-line forums. The guys from the HOG chapter I ride with have offered to help Roni and me anyway they can. Vinny, the director of NYC HOG, even spent a whole half a day picking up my bike from one place up north and taking it to his house to store it there. He even called a few times out of the blue just to check up on things and see how we were doing. The online community has also been there. People I have never met in person, offering moral support and their prayers have been humbling.
The last group of my friends are those cancer fighters who are part of my support group. This consists of those who are cancer patients and cancer care-givers. People like Steph, Wen, Pat, Frank, etc. have all been great in offering support and advice. This group of friends have gone through, or continue to go through what Roni and I are going through now. The fact that they are still around is an encouragement to me to keep fighting this terrible disease.
The third part of my team consist of my doctors. There is Dr. Bernstein, our family doctor. He was the one who encouraged us to transfer from the city hospital ER and go to St. Lukes//Roosevelt. He also had the ER staff ready for us when we showed up and even had the surgeon picked out to do the surgery. That brings me to the surgeon who performed the emergency surgery on me, Dr. Wishner. He spent three hours operating on me, and cleaning out the infection that had occurred due to my perforated bowels. He basically saved my life. Dr. Wishner was always available with any questions we had, and even very sympathetic when he gave us the bad news about the cancer.
Then there are the cancer specialists. The first is Dr. Richard Warner. Dr. Warner is a specialist in carcinoid tumors, the type of cancer that we first thought I had. He helped us confirm the diagnosis and pointed us to our oncologist, Dr. Ratner. Dr. Ratner has guided us in our fight and has taken the time to do the research with this rare form of cancer, and even reached out to others that we asked him to. Most specifically, Dr. Paul Sugarbaker. Dr. Sugarbaker is the final member of my medical team. He is the specialist in dealing with this form of cancer and will be performing the lengthy surgery to remove the cancer. We have only met with him once, but even the fact that he met with us says that he thinks he can help me.
Then there are the people who we never met. People who are friends of our family that are praying for us. People who send me cards and notes saying they are praying for me and have never even met me. That just amazes me.
Finally, there is the spiritual world. G-d has been the anchor that has kept us during this ordeal. He has been with us every step of the way, and looking back, we can see how he has guided us and kept us. His word has been a source of inspiration. He has been there when Roni and I had nothing left but tears. Without G-d, I don’t know how I would ever survive this.
There are a lot of people on my team. I could never begin to thank them enough for all they have done. I will always be in their debt for the love, concern and support that they all have shown to my wife and me.
Another part of having cancer is surviving. I’ll write more about that when I start that phase.
Thursday, January 08, 2004
Consults & Next Steps
Kevin writing:
Just wanted to update you on our visit with Dr. Sugarbaker.
Dr. Sugarbaker is a very nice man and seems very confident. He also seemed very busy but took the time needed with us and answered all of our questions.
He started by examining me, then we went into his office where he went over my CT scans with us. He showed us where the tumors were and told us what needed to be done. Then for his records, he dictated what the plans for the surgery and gave us percentages. That is where my heart stopped beating. Not literally, but I did feel like I got punched in the stomach and had the wind knocked out of me. Roni was more prepared then I was. Basically he said there was a 50% chance of him getting all of the cancer, then another 50% chance of me surviving. That means he is giving me a 25% chance over all. Not great odds. I basically sat there stunned. He then told us what he believes the surgery will take about 12 hours. I will spend two days in ICU, with a total of 21 days in hospital and another 21 days recovering at home.
Yeah, I was shocked and scared and just wanted to get home so I could crawl under the covers and cry. I was certainly not expecting the odds to be that bad.
Now, after a few days to recover, I am doing better. I realize that I have a fight in front of me and am gearing up for it. Even with 25% I still have a chance to beat this and that is what I am concentrating on. As Dylan Thomas put it, I will rage against the dying of the light. That doesn't mean I'm not scared. I still hate doctors, hospitals, surgeries, etc. but I want to live and will do what is necessary. Plus, we really believe that G-d can and still does miracles.
When we first got the appointment, Dr. Sugarbaker suggested I do some more chemo before the surgery, but I was told by his wife that how much really depended on my oncologist. When I asked my oncologist how much I should have, he said I should have the surgery as soon as possible and to cap the Oxaliplatin to two rounds. I have already had one. During our consultation with Dr. Sugarbaker, he suggested we do the surgery sometime in May so I could finish my chemo. I told him that my oncologist suggested we do the surgery sooner and asked if it was possible. I then told him that my oncologist suggested one more round of Oxaliplatin, which will be on Jan 19th. Dr. S wanted to wait one month after the chemo and suggested Feb 18th as a surgery date. So we chose that date tentatively.
This Wednesday, we met with my oncologist again and filled him in about our consultation with Dr. Sugarbaker. We also told him about the surgery date and asked his opinion again whether to do the surgery sooner, or to finish the chemo, then do the surgery. Again, he suggested to do the surgery as soon as possible. So it is now confirmed. I will have the "Mother of all surgeries" on Feb 18th.
Roni writing:
It's been hard having my suspicions about the seriousness of this disease confirmed. Harder still has been watching the reality land on Kevin. We are both a bit shell shocked, but yesterday Kevin went to the gym and worked out hard on the treadmill (physical fitness is key in recovering from the surgery) when what he really wanted to do was watch the Simpsons in bed all night. I'm proud of the soldier in him that enables him to rise above his feelings and "get the job done" through pure stubborn determination and perserverance. He inspires me. Still, we both know that even on our strongest days, our strength alone is not sufficient. G-d continues to be our Rock and a "very present help in time of trouble."
Often it is your hugs and words that serve as G-d's instruments for providing that "present help." We continue to be so touched and buoyed up by the emails and phone calls from so many people. We truly are blessed to have so many caring, praying people in our lives.
I've started the process of working with the insurance company to get the surgery and all that goes with it approved at 100%, as though it was in network. This is a huge area for prayer, especially that the insurance company will be "reasonable" in their reasonable and customary (R&C) caps. Ilsa (Dr. S's wife and office manager) says the Ins. companies try to get away with setting their R&C ceiling according to what surgeons typically charge for two-hour procedures. Obviously, Dr. S. needs to charge more than that for 12 hours on his feet!
Of course, we will pay whatever it takes to give Kevin the best chance at beating this, but it would be nice if he didn't have a mountain of debt to face after recovery. I think we have a strong case for the insurance company to cover everything, and I will be such a pest that they agree to it if for no other reason than to get rid of me!
I know that Kevin's cancer is not just happening to us, but to all who love us as well. We must all decide not to give in to despair. Kevin is in the best of hands that modern medicine has to offer, but more importantly, he is iin the hands of the Almighty. We know G-d still does miracles -- from healings that confound doctors to providing strength, grace, comfort and courage to face any challenge.
We continue to remind ourselves that life is one day at a time for all of us mortals. One of my "theme songs" is one by a friend who later died of breast cancer with an amazing peace that could only be supernatural. It's words are a wonderful prayer for a life well lived one day at a time, and I thought I'd share the words with you (the chorus is actually in Hebrew, but I've given the English translation):
------------------------------------
O My Strength
by Caren Buffum
Make me an instrument of Your praise
A song of love in the morning
Teach me to walk in all Your ways
Enlighten my path before me
Chorus:
O my Strength, I sing praise to You
You O G-d are my fortress, my loving G-d
Make me a tune that You can play
To lift the hearts of the weary
Teach me the words that I can say
And open their ears to hear me
Repeat chorus
Just wanted to update you on our visit with Dr. Sugarbaker.
Dr. Sugarbaker is a very nice man and seems very confident. He also seemed very busy but took the time needed with us and answered all of our questions.
He started by examining me, then we went into his office where he went over my CT scans with us. He showed us where the tumors were and told us what needed to be done. Then for his records, he dictated what the plans for the surgery and gave us percentages. That is where my heart stopped beating. Not literally, but I did feel like I got punched in the stomach and had the wind knocked out of me. Roni was more prepared then I was. Basically he said there was a 50% chance of him getting all of the cancer, then another 50% chance of me surviving. That means he is giving me a 25% chance over all. Not great odds. I basically sat there stunned. He then told us what he believes the surgery will take about 12 hours. I will spend two days in ICU, with a total of 21 days in hospital and another 21 days recovering at home.
Yeah, I was shocked and scared and just wanted to get home so I could crawl under the covers and cry. I was certainly not expecting the odds to be that bad.
Now, after a few days to recover, I am doing better. I realize that I have a fight in front of me and am gearing up for it. Even with 25% I still have a chance to beat this and that is what I am concentrating on. As Dylan Thomas put it, I will rage against the dying of the light. That doesn't mean I'm not scared. I still hate doctors, hospitals, surgeries, etc. but I want to live and will do what is necessary. Plus, we really believe that G-d can and still does miracles.
When we first got the appointment, Dr. Sugarbaker suggested I do some more chemo before the surgery, but I was told by his wife that how much really depended on my oncologist. When I asked my oncologist how much I should have, he said I should have the surgery as soon as possible and to cap the Oxaliplatin to two rounds. I have already had one. During our consultation with Dr. Sugarbaker, he suggested we do the surgery sometime in May so I could finish my chemo. I told him that my oncologist suggested we do the surgery sooner and asked if it was possible. I then told him that my oncologist suggested one more round of Oxaliplatin, which will be on Jan 19th. Dr. S wanted to wait one month after the chemo and suggested Feb 18th as a surgery date. So we chose that date tentatively.
This Wednesday, we met with my oncologist again and filled him in about our consultation with Dr. Sugarbaker. We also told him about the surgery date and asked his opinion again whether to do the surgery sooner, or to finish the chemo, then do the surgery. Again, he suggested to do the surgery as soon as possible. So it is now confirmed. I will have the "Mother of all surgeries" on Feb 18th.
Roni writing:
It's been hard having my suspicions about the seriousness of this disease confirmed. Harder still has been watching the reality land on Kevin. We are both a bit shell shocked, but yesterday Kevin went to the gym and worked out hard on the treadmill (physical fitness is key in recovering from the surgery) when what he really wanted to do was watch the Simpsons in bed all night. I'm proud of the soldier in him that enables him to rise above his feelings and "get the job done" through pure stubborn determination and perserverance. He inspires me. Still, we both know that even on our strongest days, our strength alone is not sufficient. G-d continues to be our Rock and a "very present help in time of trouble."
Often it is your hugs and words that serve as G-d's instruments for providing that "present help." We continue to be so touched and buoyed up by the emails and phone calls from so many people. We truly are blessed to have so many caring, praying people in our lives.
I've started the process of working with the insurance company to get the surgery and all that goes with it approved at 100%, as though it was in network. This is a huge area for prayer, especially that the insurance company will be "reasonable" in their reasonable and customary (R&C) caps. Ilsa (Dr. S's wife and office manager) says the Ins. companies try to get away with setting their R&C ceiling according to what surgeons typically charge for two-hour procedures. Obviously, Dr. S. needs to charge more than that for 12 hours on his feet!
Of course, we will pay whatever it takes to give Kevin the best chance at beating this, but it would be nice if he didn't have a mountain of debt to face after recovery. I think we have a strong case for the insurance company to cover everything, and I will be such a pest that they agree to it if for no other reason than to get rid of me!
I know that Kevin's cancer is not just happening to us, but to all who love us as well. We must all decide not to give in to despair. Kevin is in the best of hands that modern medicine has to offer, but more importantly, he is iin the hands of the Almighty. We know G-d still does miracles -- from healings that confound doctors to providing strength, grace, comfort and courage to face any challenge.
We continue to remind ourselves that life is one day at a time for all of us mortals. One of my "theme songs" is one by a friend who later died of breast cancer with an amazing peace that could only be supernatural. It's words are a wonderful prayer for a life well lived one day at a time, and I thought I'd share the words with you (the chorus is actually in Hebrew, but I've given the English translation):
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O My Strength
by Caren Buffum
Make me an instrument of Your praise
A song of love in the morning
Teach me to walk in all Your ways
Enlighten my path before me
Chorus:
O my Strength, I sing praise to You
You O G-d are my fortress, my loving G-d
Make me a tune that You can play
To lift the hearts of the weary
Teach me the words that I can say
And open their ears to hear me
Repeat chorus
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