Joe's
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updates on his/our status
April
Hello from Kelowna!!
I wanted to steal a little time to write everyone an update on Big Joe!
As many of you know, these past couple of months have been really tough! We hoped that the Sutent drug Joe started in January would help minimize the tumors size and discourage spreading of more.
Unfortunately, at the end of February we found out that was not so. The tumor in Joe's right adrenal gland had grown over an inch and a new tumor appeared in his pancreas.
The Sutent drug had also caused damage to Joe's heart ~ about a 20% decrease in function to his left ventricle.... making Joe slightly below normal!! Thank goodness he was sooo strong prior to going into this thing!!! No wonder so many of our older family member do not survive the treatment!
The team at Seattle Cancer Care Alliance recommended that we return to see Dr Reese for radiation treatments to the right adrenal gland. Radiation seemed to be the only successful treatment that decreased the tumor in his right shoulder about a third.
Dr Reese and his entire staff from Overlake Radiology have been wonderful, but the 20 treatments over the course of 4 weeks were horrible!! The radiation affected Joe's digestive tract and he spend the entire month throwing up! He was weak and depressed the whole month. That has been the real struggle... the treatments for cancer are sooo harmful to both the body and spirit.
After Joe completed his final treatment on April 4th we both agreed that we were not going back to that!!! We would look for treatments that would not make him want to die! The treatments we are receiving now will hopefully slow down the growth and even reverse it!
At this point maintenance is a good thing... stop it in its' tracks! It may not extend Joe's life, but he will not spend it sick!! It is sooo sad and scary, but we are determined to fight our way!!
Canada is treating us well... and everyone at The Kelowna Naturapathic Clinic (www.natural-medicine.ca) are wonderful! We really like Dr Swetlikoff.... any dr that says "shit' during the initial consult Joe likes! He is real... he is optimistic and gives us options that will help Joe feel better not worse.
Last week Joe received Vit C infusions (50-75 grams in an hours). This high dosage reacts like chemotherapy. The cool thing is the Vit C attacks just cancerous cells unlike standard Chemo that attacks everything.
Joe also went through two whole body hyperthermic treatments w/ ukrain infusions. During this treatment they slowing increase Joe internal body temp to 104 degrees for up to 2 hours. All of you know what kind of hell that was for Joe!! I read to him, wiped the sweat from his face and gave him water. The treatments are torture, but Joe always finished feeling good!
They also gave him mistletoe injections for home and Comitris supplement. The mistletoe will stimulate his immune system and the Comitris (fish cartilage extract LCE). http://douglaslabs.com/pdf/pds/99465.pdf
The important thing is Joe is feeling better and we have another week of healing!! By the end of this week, we should have a game plan for ongoing treatment until we have more CT scans. The next set of xrays will tell us how well these treatments worked and what our next step will be!!
Thank you soooo much for all your wonderful notes, emails, and phone calls. We truly appreciate all the love, prayers and support we have received!!
I will do my best to keep you posted and if you can forward this to other friends I would greatly appreciate it... it lightens my load on dispencing info!!
Take care & Look forward to see you all soon!!
Debby Lukas
December
Ho Ho Ho !! Joe & I had a wonderful holiday full of blessings & wonderful surprises. Thank you to everyone that contributed to our Healing Tree. Our trainers organized a beautiful living Christmas Tree, Joe & my tradition, with friends & family contributing festive decorations. It was truly amazing & filled our hearts during our anxious time.
On December 12th Joe went in for his anticipated kidney surgery. Dr. Weissman at first thought he could remove Joe’s kidney laparoscopically, but of course Joe does not do anything EASY!! Haha!! When Dr. Weissman took at look around he found that the kidney tumor had stuck itself to Joe’s adrenal gland, pancreas, spleen, & colon. Dr. Weissman was forced to open Joe up… and boy did he open Joe up!! Dr. Weissman said it was one of his most challenging nephrectomies. He carefully peeled the tumor away from the organs without removing or damaging anything. Joe woke up in his room at 9pm with an impressive 18 inch scar! Joe spent 6 days at the Overlake spa … around the clock IV cocktails, sponge baths & meals in bed!
During his stay he met with a surgeon for the tumor in his shoulder. Dr. James Bruckner took another upper Ct Scan & MRI of his shoulder. They found that the tumor is still 3 inches in size and situated around the brachial plexus nerve bundle http://intraspec.ca/images/brachialplexus.jpg . The location of the tumor & the size make it almost impossible to remove it without causing nerve or tissue damage. Since the radiation did not seem to shrink the shoulder tumor, we are headed to Cancer Care Alliance & Dr. Thompson for the chemotherapy drug Sutent. Joe is scheduled to start the Sutent in about 4 weeks. We are learning to take this challenge one step at a time and not get discouraged by new information. We are trying not to judge the information as good or bad… it is what it is & we must continue to search for solutions. Chins High!!
Since the shoulder surgery was a no go, they quickly discharged Joe. He was very happy to be home ~ he was able to sleep & the food is a lot better. Over the past 4 weeks Joe has been recovering gradually. His endurance, energy & appetite have been steadily increasing. Do not panic if you have not seen or heard from Joe… simple life function is taking sooo much energy right now. People have reached out to us in so many incredible ways & we are so very grateful. Please excuse the late thank you cards. I am working on them gradually, but if I do not get to each one…PLEASE know we love each of you & feel so blessed to have such amazing support.
November
Wow… November has passed so fast. It has been a challenging month for Joe, both physically & mentally. Thank you to everyone who has dropped us notes, cards, email, fixed a meal, or surprised us with a kind act or gift. We have been overwhelmed by your love & generosity. When we have been down, you have uplifted us with your kind spirit. Thanksgiving was the most amazing day… so many things to be grateful for. As we were surrounded by family & friends we felt rich in life & grateful for every moment with them. Thank you … Thank you….
On Friday, November 23rd Joe completed his tenth & final radiation treatment on the tumor in his right shoulder. Our hope is the pain will gradually decrease as the tumor reduces in size. On Monday, November 26th, we met with a surgical urologist at Overlake Hospital, Dr. Weissman http://www.bellevueurology.com/weissman/index.htm. Our team of doctors has determined that they are going to remove the left Kidney, then treat the metastasized tumor on the right adrenal gland with drug therapy. Joe will be going into surgery on Wednesday, December 12th, at 3pm. Dr. Weissman is hopeful that the kidney can be removed laproscopically. This will decrease Joe’s recovery time dramatically! With some extra TLC from Nurse Debby, I am sure he will be back to speed by the new year!
In January Joe will be starting the drug therapy, Sutent http://www.sutent.com . In the weeks to come Joe will be focusing on increasing his strength & boosting his immune system. More broccoli for JOE!! Oh Yeah… Joe will be visiting the baby bank, Pacific NW Fertility Clinic http://pnwfertility.com/default.asp. This wonderful facility has a special discounted program for newly diagnosed cancer patients. Look for a little Chili Joe or Halle LuLu Lukas in 2008!! Hahaha!!
October
Thank you for checking in on us! The past month has been crazy for Joe & I, but we are grateful for everyone’s support, love & positive MoJo! First & foremost, Joe is feeling really good. He has never eaten, slept, or felt so determined in his life!
To quickly recap the details….While we were cruising on our epic, two week Harley ride this summer, Joe’s right shoulder started to bother him. After 3 months of Joga & shoulder rehab with no relief, Joe went to Dr. Ghislaine Robert, Redmond Ridge Sports Medicine http://www.ghislainerobert.com/index.htm . On October 5th Joe had a MRI for on his right shoulder. The following Monday, October 8th Dr. Robert asked Joe to come in immediately to review the MRI results. She informed Joe that his rotator cuff muscles were strong & healthy, but that his shoulder pain was being caused by a 2 inch tumor imbedding into his shoulder blade & pressing into the nerve. Dr. Robert scheduled an Upper CT Scan for the Joe the following morning. After completing the CT scan on Tuesday, October 9th, Joe & I met with Dr. Robert. She regretfully had to deliver the devastating news. She informed us that Joe had Stage 4 Kidney Cancer. Our mouths dropped, our eyes filled with tears, we could not believe this was happening.
Dr. Robert set an appointment that afternoon with Dr. Tonya Wahl, Oncology http://www.overlakecancercenter.com/about_us.htm. She provided A LOT of information about our diagnosis & treatment plans. Our heads spun as countless tests were step up for Joe… More CT scans, bone scans, MRI’s, biopsy, blood & urine tests. When the dust settled & the tests were complete, we understood the full scope of Joe’s cancer. Joe has a large, softball size tumor in his left kidney. The primary cancer has metastasized to his right adrenal gland & his right shoulder.
We have met with Dr. John Thompson, Kidney Oncology Specialist, http://www.seattlecca.org/healthprofessionals/directory/detail.asp?nodeID=5271 . His excellent reputation was proven correct. Dr. Thompson & his staff were wonderful. They had the perfect balance of empathy & information. They explained that Joe’s form of kidney cancer, clear cell carcinoma, is slow growing. He has had the kidney tumor for a while. The sense of urgency the doctors have comes from the advanced Stage 4. Their goal is to stop or slow growth & spreading of the disease. With kidney cancer they use several therapies to accomplish this goal: Surgery to remove effected kidney, Radiation on secondary tumor (Right Shoulder), & targeted drug therapy ~ http://www.kidneycancer.org has more specific information.
While maneuvering through this maze of information, Joe & I have investigated Alternative Cancer Treatments that are less invasive & the side effects are all positive. Since Joe was diagnosed he has not touched one piece of unhealthy food or drink. He has committed to a fully alkaline diet ~ http://www.nutritioncancer.com/ . The first weekend, we cleared out all processed foods, alcohol, sugars, white flour, red meat, chicken…. Everything but wild, cold water fish, organic fruit & veggies, rice, lentils, beans & tofu. For those who are close to Joe, know this has been a huge change for my meat & potato guy!
Knowing my challenge to disguise broccoli as Italian sausage, I enlisted a “Pro”…. Randi from Delicious Planet, Organic Meal Delivery http://www.delicious-planet.com/. Wonderful friends delivered a Breville juicer for Joe’s daily cabbage, carrot, parsley juice!! This thing is amazing!! With the coffee machine packed away, our Vitamixer & Juicer whip up interesting veggies smoothies!
To assist us with personalized supplements, we met with Dr. Heide Lucas, Naturopathic Doctor that specializes in integrated cancer treatments & support http://www.seattlecancerwellness.com/integratedtherapies_naturopathy_team.html. She provided us with personalized information on what vitamin supplements Joe was deficient in, supplements that will boost his immune system, & herbs that will compliment his conventional cancer treatments. We will continue to meet with her throughout our treatments to ensure Joe is as strong & healthy as possible.
Joe has also visited a great acupuncture clinic in Bellevue ~ Dr. Becky Su & Dr Ying Jia Hu http://www.drbeckysu.com/index.htm. Joe has reduced his hours at work (down to only 8 hours a day ha ha ha!!). It is vital to Joe’s immune system to get sleep ~ a life long struggle for Joe. He has also started Qi Gong http://www.everyday-taichi.com/qigong-exercise-pictures.html and Daily Meditation http://www.drwaynedyer.com .
We want everyone to know that Joe is feeling strong, mentally & physically. We are evaluating each step & will keep you all updated. We both want everyone to be inspired to make healthy choices in your own life. With this new challenge, Joe & I are learning so much & will share this with everyone in our lives.
We encourage you to have your annual exams, enlist a doctor that believes in an Integrated Medical approach~ Dr. Oz http://www.oprah.com/xm/moz/200612/moz_20061214.jhtml gives wonderful examples of how each of us can increase health & decrease risk of disease by eating healthy, exercising, taking supplements for vitamin deficiencies, more relaxation, laughing even sex! Thank you again for your support ~ we are grateful for the amazing people in our lives. Every blessing, card, email has lifted our spirits & filled our souls. We have so much hope & determination ~ we have been given a life sentence!
Live every moment with purpose ~ Debby
