February 21, 2008
Dear friends and family,
When Jon was first diagnosed with cancer he asked me to do two things. First, be strong and second, keep our lives as normal as possible. This is a tall order when you’ve only been married for three months and the doctors just told you your husband has two months to live. Jon never asked me to devote hours of endless research for treatment options, accompany him to weekly chemotherapies, or come home from work to feed him lunch when he was too weak to get out of bed. He didn’t ask me to schedule and coordinate all of his appointments, interpret his scans, or sit by his bedside day and night when he was hospitalized. The job of a cancer patient’s spouse is long and arduous. Nevertheless, we somehow find the courage and strength to face each day without hopelessness.
You might then ask yourself, “What is “normal” for Jon and Lorri Nichols?” Well, our fist date was a hike and our honeymoon was a backpacking trip. We have ridden our bikes from Seattle to Portland and to the top of Mount St. Helens. Jon actually proposed to me on a mountain bike at the top of Grass Mountain which is a 4000 foot vertical climb. He quips that he was only going to propose if I made it to the top (but secretly brags that I am the only women he knows who has done so.) We’ve owned and operated two successful businesses that we individually started from scratch. We’ve raised four beautiful children, both separately and together, and have one adorable granddaughter with another on-the-way in October. I certainly never thought we would end up here, fourteen months into treatment for pancreatic cancer with a liver resection surgery just around the corner. What a time to plan a bike ride!
I am participating in a 100 mile cancer fundraising bike ride now because every day thousands of people are told the same thing, “The person you love is terminally ill.” Every one of those people and their families deserve the support of those of us who are healthy and able to do the things that they can’t. Every one of them deserves a cure.
I am asking you to support me in honor of my husband, Jon, because this is what we do and right now he can’t. I am riding for every cancer patient that has to endure the routine weekly chemotherapies and its terrible side effects. For the majority of patients that don’t have an industry-leading caregiver like Dr. Chue to remind them that there is a reason to hope.
Please support us by sending your tax deductible donation to me at the address below or check out my website www.supportlorri.com to donate online. I must raise $4,500.00 to participate. The bike ride, sponsored by the Lymphoma and Leukemia Society of America will be held on June 1, 2008 in Lake Tahoe. I am hoping next year that Jon and I will repeat it together.
Thank you for your support,
Lorri A. Nichols
18319 53rd St. Ct. E.
Lake Tapps, WA 98391
Thursday, February 21, 2008
Tuesday, February 19, 2008
Chemo Tuesday
Today was a fairly uneventful chemo. Jon went solo since he was feeling OK and I had lots of office stuff to do. Surprisingly his red counts were all up but because he ended up refusing his Neupogeon injection last week (yes, the one he agreed to last Tuesday!) his white count was in the tank. I'm giving it to him tomorrow even if I have to get Levi and Kelsey to hold him down! I reminded Jon of how he ended up in the hospital last year with double pneumonia. He says he doesn't remember a thing but he WAS unconscious the first 48 hours of that escapade.
I made him two surgical consultation appointments and sent record requests to all of his providers and imaging centers to collect the necessary data for the surgeons. Our first appointment is February 28 with Dr. Michael Hart.
Keep all of those prayers and positive thoughts coming our way!
I made him two surgical consultation appointments and sent record requests to all of his providers and imaging centers to collect the necessary data for the surgeons. Our first appointment is February 28 with Dr. Michael Hart.
Keep all of those prayers and positive thoughts coming our way!
Monday, February 18, 2008
Grandbabies On The Way!
Jon returned from Idaho to the exciting news that Levi and Ericka are expecting a baby! The old guy cried, of course. We celebrated Sunday night with a family dinner and everyone is extremely excited about the new addition. I am a bit concerned that I am going to have to fight ALL of those Rogers women for some time with the little one but I'm sure we'll figure something out :)
Tuesday, February 12, 2008
Jon is on #5 of the 12 chemos in this session. Everything went pretty well today but he is starting to get the "hand/foot syndrome" they warned us about. Currently his hands and feet are only slightly red but apparently they can become quite swollen and even blister with the Doxil. To prevent this they give him ice packs for his hands and feet during the chemotherapy and then he is supposed to continue with the ice packs for 2-3 days after chemo. His white and red counts were all still low so he grudgingly agreed to the Nupogeon injection which I am supposed to give him tomorrow night.
Jon also mentioned today that his liver is a little sore since starting the Doxil and it seems to get a little more so each day. We are encouraged that this is a sign of more tumor death since it correspondended with the onset of a new treatment. They drew blood for his tumor marker today so we should know more next week.
We've had more discussion with the doctors on the liver resection and asked about the laproscope. They are all going to discuss it with Dr. Chue and get more information to us next week. In the meantime we continue to reasearch surgeons and I am going to collect all his scans and start to schedule some consultations. I guess we(at least I) went from being a little surprised and overwhelmed by the possiblity of surgery to excited about the possiblity of a real cure.
Jon's spirits are ususally good and he is planning on driving over to Idaho with Rex to see our friends Ray and Leone who are visiting their ranch in Riggins. He's been pretty tired towards the end of the week, post-steroid crash, so I'm happy he is not going on the trip alone.
Jon also mentioned today that his liver is a little sore since starting the Doxil and it seems to get a little more so each day. We are encouraged that this is a sign of more tumor death since it correspondended with the onset of a new treatment. They drew blood for his tumor marker today so we should know more next week.
We've had more discussion with the doctors on the liver resection and asked about the laproscope. They are all going to discuss it with Dr. Chue and get more information to us next week. In the meantime we continue to reasearch surgeons and I am going to collect all his scans and start to schedule some consultations. I guess we(at least I) went from being a little surprised and overwhelmed by the possiblity of surgery to excited about the possiblity of a real cure.
Jon's spirits are ususally good and he is planning on driving over to Idaho with Rex to see our friends Ray and Leone who are visiting their ranch in Riggins. He's been pretty tired towards the end of the week, post-steroid crash, so I'm happy he is not going on the trip alone.
Saturday, February 9, 2008
Too Much Snow and Liver Resections
Its been snowing like crazy here in the mountains of Washington. Jon has been east since Thursday and the kids and I were heading over this morning. Well until the avalanche and the closed pass. We spent the day goofing around in Seattle instead while Jon sleeps in his truck until the pass opens at midnight tonight. So no snowmobiling this weekend for the fam.
I've been doing some research on liver resections and found that the University of Southern California Medical Center is doing them laproscopically. That is exciting because it makes the surgery much less invasive and therefore less risky with a shorter recovery. I will talk to Dr. Chue about it next week and explore the possiblity of finding a surgeon in our area or traveling to California for the procedure. I don't know if Jon would be a candidate depending on the size of the tumors but its an exciting possiblity.
I've been doing some research on liver resections and found that the University of Southern California Medical Center is doing them laproscopically. That is exciting because it makes the surgery much less invasive and therefore less risky with a shorter recovery. I will talk to Dr. Chue about it next week and explore the possiblity of finding a surgeon in our area or traveling to California for the procedure. I don't know if Jon would be a candidate depending on the size of the tumors but its an exciting possiblity.
Thursday, February 7, 2008
Deep Breathing
I feel like hyperventilating everytime I think about Jon having that surgery....sometimes in a good way, sometimes in a bad! On one hand it's exciting to think about a potential cure, on the other hand the thought of him going through the procedure and the long recovery is almost more than I can stand. Jon and I have been talking about how "comfortable" we've become with our routine of chemotherapy. Just plodding along each week, knowing what to expect, which days will be good or bad. I thought we'd have more time to prepare for this eventuality but I have to remember that there is a small window where the cancer has shrunk enough to make surgery an option, yet the patient is strong enough to survive the surgery. It appears that Dr. Chue thinks that window is now. This is it, the time find out whether this cancer is indeed curable or not. Either way it will give Jon the best chance for a cure or long-term survival.
Jon takes all this in stride. When I share my thoughts with him he reminds me that there's a 30% chance chemo won't shrink the tumors enough to have the surgery, a 30% chance that it will, and a 30% chance that this round of chemo will kill the rest of the cancer and surgery won't be necessary. Then he went hunting and reminded me that we are to live a normal life despite it all.
So off I go to work, then to take Kelsey for a job interview, his driver's test, a meeting at the high school for International Baccelaruate, piano lessons, etc. etc. etc. Saturday morning Levi, Ericka, Kelsey and I are also heading over the pass to meet Jon at our friend's cabin for a weekend of snowmobiling. Sounds like a pretty normal week in the life of a cancer patient and his family :)
Jon takes all this in stride. When I share my thoughts with him he reminds me that there's a 30% chance chemo won't shrink the tumors enough to have the surgery, a 30% chance that it will, and a 30% chance that this round of chemo will kill the rest of the cancer and surgery won't be necessary. Then he went hunting and reminded me that we are to live a normal life despite it all.
So off I go to work, then to take Kelsey for a job interview, his driver's test, a meeting at the high school for International Baccelaruate, piano lessons, etc. etc. etc. Saturday morning Levi, Ericka, Kelsey and I are also heading over the pass to meet Jon at our friend's cabin for a weekend of snowmobiling. Sounds like a pretty normal week in the life of a cancer patient and his family :)
Tuesday, February 5, 2008
A Visit From Dr. Chue
We are just finishing up our ususal Tuesday round of chemo. Jon is napping and it just struck me how I've come to enjoy the weird rythem of the IV machine that delivers his chemotherapy. Kinda stange?!
Jon gets the Doxil every other week and we are beginning to see a pattern where there is significantly more fatigue during his Doxil weeks than when he receives Taxol alone. He was tired from Thursday to Sunday and only got 2.5 workouts in last week (walking up and down Lakeland Hills only counts as a "half" workout in Jon's mind). He did however enjoy having a good UFC party Saturday night and the Superbowl on Sunday. His highpoint was having our grandaughter, Maelie, sit on his lap and watch the fights with him for over 20 minutes. It's rare for that girl to sit still longer than a few seconds!
All of Jons bloodcounts were on the low side today which would account for his increased fatigue. Dr. Chan tried again to sell him on the Nuepogeon to raise his white counts but no go. He's going to bump up his Nuetrophil Plus supplements which worked great last time. We are still struggling with trying to keep his red counts up since they directly affects his energy level which affects his workouts which tremendously influence his emotional state and attitude. Considering all the chemo he's had his counts are OK but I've called in all of my markers to try to find something that can do better. I know by now that the single most important thing we can do is keep his attitude positive.
Dr Chue paid us a visit today. I think he heard the rumor that Jon would like to attempt a return to Alaska in the spring. Instead of an OK we received a salespitch on a liver resection. Dr. Chue was surprisingly more in favor of the surgery than he's been in the past and, quite frankly, I think he sees it as the only true cure. He told us today that approximately 40% of colon cancer patients who have metastasis to the liver are cured with a liver resection once the chemo has killed the rest of the cancer throughout the colon. Those who aren't long term survivors extend their life on the average of 1-2 years. This is not typical protocol for pancreatic cancer patients but only because most of them don't live long enough for it to become an option. Jon and Dr. Chue are still working hard on making history!
So the plan is now to continue chemo through this cycle, rescan in April and if the scan is good consider liver resection surgery. We would also have to find a surgeon who would be willing to do it. Dr. Chue is putting his money on Dr. Precht who we saw for consultation last summer. With regard to the radiofrequency ablation, Dr. Chue is not optimisitc that the one large tumor in Jon's liver will ever shrink small enough with chemo to make that an option.
Jon gets the Doxil every other week and we are beginning to see a pattern where there is significantly more fatigue during his Doxil weeks than when he receives Taxol alone. He was tired from Thursday to Sunday and only got 2.5 workouts in last week (walking up and down Lakeland Hills only counts as a "half" workout in Jon's mind). He did however enjoy having a good UFC party Saturday night and the Superbowl on Sunday. His highpoint was having our grandaughter, Maelie, sit on his lap and watch the fights with him for over 20 minutes. It's rare for that girl to sit still longer than a few seconds!
All of Jons bloodcounts were on the low side today which would account for his increased fatigue. Dr. Chan tried again to sell him on the Nuepogeon to raise his white counts but no go. He's going to bump up his Nuetrophil Plus supplements which worked great last time. We are still struggling with trying to keep his red counts up since they directly affects his energy level which affects his workouts which tremendously influence his emotional state and attitude. Considering all the chemo he's had his counts are OK but I've called in all of my markers to try to find something that can do better. I know by now that the single most important thing we can do is keep his attitude positive.
Dr Chue paid us a visit today. I think he heard the rumor that Jon would like to attempt a return to Alaska in the spring. Instead of an OK we received a salespitch on a liver resection. Dr. Chue was surprisingly more in favor of the surgery than he's been in the past and, quite frankly, I think he sees it as the only true cure. He told us today that approximately 40% of colon cancer patients who have metastasis to the liver are cured with a liver resection once the chemo has killed the rest of the cancer throughout the colon. Those who aren't long term survivors extend their life on the average of 1-2 years. This is not typical protocol for pancreatic cancer patients but only because most of them don't live long enough for it to become an option. Jon and Dr. Chue are still working hard on making history!
So the plan is now to continue chemo through this cycle, rescan in April and if the scan is good consider liver resection surgery. We would also have to find a surgeon who would be willing to do it. Dr. Chue is putting his money on Dr. Precht who we saw for consultation last summer. With regard to the radiofrequency ablation, Dr. Chue is not optimisitc that the one large tumor in Jon's liver will ever shrink small enough with chemo to make that an option.
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