February 23rd

(sorry for the delay-my poster has been preoccupied)

I just returned from my first trip to the therapist at OHSU. I am having a very difficult time walking correctly and keeping my balance. My walking problem is coming from the fact that my right calf muscle is very weak, so I am using my heels to push off with as opposed to my toes. The toes are curling and I need to learn to relax them. Several of the exercises are designed to help me in this area. I am also to begin a series of exercises to strengthen my calf muscle. The doctors also told me that my 45 minutes on the stairmaster and eliptical are too long. So I will now do 15 minutes on the stairmaster, 15 minutes on the eliptical, and 15 minutes on the stationary bike (yuck!). They also said I could swim and Kath, Tory, and I both just laughed! I swim like a rock, so that will not be happening. As for my pain, I am able to do my supervision work during the day and run errands with Kath and only feel a bit of pain on a 1 to 2 level (10 point scale). The evenings when I relax is the bigger issue. I've had to resort to taking a pain med around 11pm or after. This is when I have experienced pain at levels 5 - 8. Being someone that has never used medicine, this has been a hard pill to swallow (a little play on words!). Mentally I am doing fine. I have such a fantastic wife, family, and friends that give me constant support. As I have said before, this is a war and all of these obstacles are the battles and I plan to fight each one. I will continue to keep you updated and I really do appreciate all that read this and give me your thoughts!

February 9th

Yesterday I had two more doctors added to the "Take Care of Ron" medical team! My wife (Kath), brother (Brad), son (Michael), daughter-in-law (Amber), and I attended my hour and a half consultation with two doctors in the pain management clinic. They were extremely thorough and explained all the options open to me. Like all the doctors that have worked with me at OHSU, they were very knowledgeable and wonderful to work with. On their recommendation, I am increasing the amount of pain nerve blocker that I have been on, in hopes of eliminating the use of Vicodin at night, which one can get dependent on. Currently I have quite a number of pills that I have to take a day (14). Kath has a system worked out, making sure I do not miss one pill! During my consultation, they tested my balance, among other things, and discovered that I don't have any. Their biggest fear is that I might take a fall, so I have to move slowly and concentrate on lifting my legs when I move. As they pointed out, someone as active as I have been through my life, it is extremely difficult mentally when you can't continue at that level. They have suggested that I continue to do activities where I don't lift my feet. I am able to use the eliptical machine, old stairmaster where you just raise your feet while in the footholds, and stationary bike. I also will schedule Physical Therapy and Physical Medicine and Rehabilitation consultations. They will show me exercises and activities I can do to help with my balance. The thing that I was most pleased with is that this is being set up for long term. They reminded me that this sarcoma is slow moving and that they are developing a longitudinal plan. I like those type of reassurances. Currently I am moving very slowly (which is extremely frustrating for, in my wife's terms, "fast Ron") , but am able to continue to work supervising student teachers through Western Oregon University. I find that when I concentrate on observing student teachers, that I don't have much pain. The problem is at night, when I try to sleep. That is when I notice the pain and it keeps mt awake, so I have to take the Vicodon (usually around 11:00. Four hours later, I wake in pain, so Kath has to get up and give me another dose. I feel bad that she is not getting any sleep, because she is always aware of how I am doing. She is incredible.

I appreciate all that are reading this entry and I do count all your comments, thoughts and blessings as a gift. I love you all and I will keep you posted!

February 2nd

I have been up to OHSU the last two days. I met with my chemo doctor yesterday and much to my dismay, my blood pressure was 177 over 115. However, the doctor was actually pleased because the high reading showed that my chemo medication is actually working. So they now have me on high blood pressure medicine, which brings my pill count to 14 a day.... Then today, I met with the orthopedic surgeon and after looking at the MRI that I had today, he felt any surgery to help relieve my pain would be too risky. He thought that it would actually do more harm than good. I appreciated his honesty. He has recommended that I go into pain management. Pain management is a meeting with another doctor that will decide what treatment they can do to get my pain under control. Currently my orthopedic surgeon has me on a pain medication that is not working so one idea might be to continue me on this medicine, but at a much higher dosage.

Also, the MRI and CT Scan showed that the bone was not as likely to break as they originally thought so surgery would not need to be done to stabilize it. He told me I could continue exercising using the stair master and the eliptical because those were both low impact exercises. He also recommended that I use the stationary bike for something different. He also mentioned that as summer approaches, I might go outside and try getting on a bike that does not have clips or baskets because he doesn't know if I could get my feet loosened before I fell, if I had to stop quickly.

After hearing this Kath, Brother Brad and I went down to the pain management office to schedule an appointment. And we were told that we would have to wait for insurance...again...before they could schedule me. Unlike the previous experiences, they were much better and I received a phone call twelve hours later with an appointment time available for me. The problem is that they can't get me in until the 17th of this month. OUCH. I guess I will have to try to manage my own pain for the next two weeks. I have scheduled to see my chemo doctor on the 29th (the day our second granddaughter will be born so that Kath can get a Starbucks card-that was her guess on delivery day). He will measure liver function at this time because the Votrient can sometimes cause problems.

I remain in good care, as always, from OHSU. I appreciate all that they are doing. My biggest thanks goes to all of you who are sending positive thoughts my way. I will continue to keep you informed of my progress-as long as my daughter Tiff's typing skills hold out. I am especially grateful for my wife and brother Brad going to all of my appointments the last few days. An extra set of ears is always good.

Love you all and thank you for your support!

January 15th

After 3 in a half weeks of hassling with insurance companies, one of them agreed to help with costs of medication (about time). I am very relieved to finally have the medication and I am now on day three of taking the medicine. I have to keep a log of any side effects that I have from the medication. I go in in two weeks from now to meet with my doctor at OHSU to see how I am handling the side effects. If I am doing okay, they will wait for less than two months to do the MRI to see if the medication is having an effect on the sarcoma. I am feeling really good except for the lack of balance and being able to walk smoothly. This condition is caused because of the sarcoma pushing on the nerves. Thursday, we go in to meet with an orthopedic surgeon to talk about a procedure they might be able to do to relieve this problem. Sitting and standing is causing me some pain and discomfort which causes me to lay on the couch for quite a bit (those who know my dad know that this is not something he enjoys to do!). I am however, able to do weights and an hour on the stair master/eliptical. So the fact that I can still exercise is a positive. I am still able to do all of my activities, just not for as long as I used to be able to do them.

Again, I have the best nurse in the world, my wife, and she is taking care of me making sure I am doing all that I am supposed to be doing. We know we will get through this, it is just another battle we have to face. With the help of family and friends, we are ready to be successful.

**Our dad has a strength of heart and determination that many only dream to have. He is a remarkable man and has the most compassionate and loving wife there is. Together, these two will make it through this. Their love and support of one another and the prayers and love of their family and friends will guide them through this time. Thank you to everyone for your prayers!

Update December 21st

Hi everyone. A couple of weeks ago my dad went in for his normal check up. Through the MRI they saw that there was a change, a lightening of the impacted area. They thought that it could be caused by the radiation or that the tumor had begun to grow. My dad went in last Wednesday for a bone biopsy to figure out what the change was caused by. Today we found out that there is still Sarcoma in the bone.

What this means is that the tumor has begun to grow. After meeting with Dr. Ryan, it appears that the tumor probably has been growing, microscopically, since treatment ended. Dr. Ryan said that at times sarcoma's can spread very quickly, but his seems to be taking its time. It most likely has been growing this whole time and just now finally was big enough to push against nerves and cause my dad the discomfort he has been dealing with. Also, it is finally a size large enough to show up on the scan.

One option we were given was to begin a pill regimen where dad will take four pills once a day. This is not meant to "destroy" the sarcoma, but it will hopefully reduce it or at least stop it from growing anymore. This is what we are choosing to do. We are waiting to see if insurance will pay for it. Wow, drugs can be expensive. It is a pill that is used for Kidney Cancer, but Dr. Ryan feels that this is the best option.

My dad will also be consulting with a new doctor, Dr. Ching. This would be for a decompression surgery where they will potentially shave off some of his bone located on his spine (sacrum) so as to relieve the pressure that has been impacting his walking. We are waiting to hear from his office to schedule this appointment.

When he went through his initial treatment, Dr. Hung used such an extreme amount of radiation that he worries anymore could cause nerve damage and end in the same result of the surgery we are not doing-loss of many abilities. Therefore, radiation is not an option that we are looking to.

The only way to get rid of the Sarcoma would be to remove it through surgery. All who know my dad know that this is not an option. So we are praying that the pills and the decompression surgery will be successful in helping my dad regain his amazing abilities and to stop the Sarcoma.

As always, we appreciate everyone's prayers and thoughts. My dad has touched many lives and it is good to know that so many people care about him.

May 23, 2011

This month marks the three year anniversary since my last radiation treatment. I feel great and there are no side effects. I have several long distance bike trips and runs planned for this summer. Again, I am blessed with wonderful support from my fantastic wife, great family and good friends. What I've learned through the whole process is that if you have great faith and determination and support from wonderful people you can do anything. This has helped to ingrain in my mind to live each day to its fullest and not take anything for granted. It feels great to see the doctors smiling and so surprised every time I go in for my checkups. They have actually released me for 9 months before my next check. Again, I appreciate any comments people do make. It is nice to know that I am still in your thoughts.

This has definitely been an unplanned trip, but one that has really strengthened me and my family in many ways. I actually look forward to being able to share my journey with others. Hopefully I can help in ways that I didn't even realize and give hope to those that are in need. Each day is a gift and I intend on living my life with that in mind.

October 2nd

It's nice that it has been so long since I have written anything because that means everything has been good. Just got done with my 6 month checkup and the doctors, again, were very excited, everything is great. Dr. Ryan said it had been 2 1/2 years since my last treatment, which is incredible. It was nice that he came in and instantly told us everything was okay so I didn't have to wait for a long winded explanation first. They did take my blood pressure at the start and it was 160 over 98 (extremely high) and after Dr. Ryan had been in and told us everything was great they took it again and it was 116 over 74. Which shows you how stressful these visits are for me...wonder how Kath's blood pressure was.

However, I have to change my workouts. They are concerned about possible stress fractures in my sacrum as a result of my intense radiation. They also recommended I run distances of half marathons and under as opposed to marathons and ultras. We will see...I will run as far as my children want me to run with them, which means I will be running half marathons and under {inserted by Tiff :)}

It does mean I will be doing a lot more bicycling, stairmaster, tredmill and weights. I will have to limit my outside running to soft surfaces as much as possible. As I told my doctors, I can live with that.

Kath has had many health related issues, so it has been quite the change being the caregiver instead of the care receiver. Kath is recovering and has kept her amazing attitude and spirit.

My brother, Brad and I ran in race for the cure and it really enforced how many lives cancer has really touched. It all comes back to being supported by family and friends for those directly impacted.

Had a great summer. Bicycled on four long trips that totaled 1200 miles. Spent two days with the family living in tree houses in Washington. I was able to do a half marathon run with Michael and Tiff, at a much quicker speed then planned. Thanks to Tiff, we were able to experience First Thursday scavenger runs. Throughout this we enjoyed free raffles and good family fun. However, our runs will be much more limited with Michaels admittance into the MBA program at Willamette and Tiff's school year starting again with her reassignment to second grade from fourth grade. She was quite shocked to see the difference in maturity between the two.

Kath and I are expecting our very first grandchild! We couldn't be more excited for Aaron and Jessica who we know will make amazing parents, but also will be willing to share (when the baby is happy and clean)! We are also very proud of Tory who has started her MAT (Masters of Arts in Teaching) program at WOU while also working many hours at Costco. She proves time and time again how strong our Carey kids are.

As always, thank you to everyone out there who has my family and me in their thoughts and prayers. Without you, we would still be here, but we wouldn't be as complete. Love you all!

March 13th

Lindell told me I had to update this, so here goes...

Even though I know I'm going to have a good check up each time, I am always very apprehensive until the doctors leave. Wednesday, I had my six month check, MRI and CT scan, and all results are, again, very positive. The doctors are still astounded at the results. One of them told me they had not expected this two years ago. It is hard to believe I am almost at the two year mark, which is a huge milestone. Kath, Tory, Tiff and myself were present when the doctors gave us the information. Michael and Amber joined us later to celebrate. Aaron had to work, but we called him as soon as we were done. Tory, Tiff, Michael and I are celebrating by running the 15K shamrock run in Portland tomorrow. Doctors thought I was nuts-my wife said they are right.

The plan is for me to go back in another six months and if all is continuing so well, they will release me for 9 months and then work it up for a year.

Our family is all very thankful. Can't thank the doctors enough for all that they did, but especially my family and friends who have been there for support and encouragement.

Thank you all from my family as well.

To dad-We are blessed to have such an amazing dad and think the world of you! You know this because all four of us kids tell you this frequently, but it never hurts to tell you as often as possible! We are all so proud of you!

October 20th

For those that are still checking, sorry it has taken so long, but my last appointment was again very exciting. Everything looks great and I have been told that they don't want to see me for six months now. Fresh off of that good news I ran the Portland Marathon with son, Michael and daughter Tiffany. Had a great time and we all finished in good health. Since I haven't gotten any smarter with age, six days later I completed my eleventh Le Grizz 50 miler Ultra-Marathon. The temperature at the race start was zero degrees and the high all day was around 23 degrees. I had icicles hanging from my eyelashes and chin. My wife made sure that I stayed safe and made it through. I am currently working half time at Western Oregon University, supervising students in their teacher education program. Hard to believe Kath and I have been in our new house for sixteen months.

Here's wishing your life is going as good as mine is right now. As always, thank you for the support.

June 7th

We had an anxious week because my back began to hurt. I was having pain like an electrical shock was occurring in my back, so they moved up my MRI by a month. Dr. Hung came in and the first thing he said, was "just so you know, there is nothing in the MRI to be concerned about". This obviously gave us some relief (A LOT!). The radiation has caused the sheath on my nerve endings to disintegrate, which is causing the pain. It usually occurs about a year out from radiation and in the neck. Like always, I have to be a rarity, so mine is located in my sacrum. It is a temporary condition and it should right itself in the next couple of months.

Afterwards, we all went out and celebrated!

I just wanted to let you all know we are going strong. Thanks again for all of your thoughts and prayers. Enjoy the summer!

February 5th

I thought I would update my progress for any of you that are still checking this blog and for those of you who are, thank you for your interest and your concern. Yesterday I got the results from my MRI and CT scan that I had this week. My doctors, again were very pleased and excited about the results. Nothing has changed, they thought I looked great and told me to keep doing what I am doing. They reminded us that sarcomas that come back, do within the first two years so my first two years will be my critical time. This April will be my 1 year anniversary from the last time I had radiation. They will keep having me come for MRIs and CT scans every three months until we do hit the two year period. As I told the doctor, I am feeling great and we'll continue my running. They did add one thing to my schedule; I am to start doing Yoga...anything to help me become more flexible. Again, I was fortunate to have most of my family at my checkup yesterday. It was nice to receive the positive news as a group. My wife continues to laugh at the shocked look of Dr. Hungs face when he saw me (He hadn't seen me since June, when I had very little hair and barely any energy). It is nice to surpirse the doctors in a positive way because they see too much of the other.

Again, thanks to all of you who have followed my family and myself through this long journey. I will continue to update this blog after each checkup. Go BEAVS!

Just wanted you all to know that I finished my tenth Le Grizz 50 mile ultramarathon this past weekend. My oldest son, Michael, and his significant other, Amber, my youngest daughter, Tiffany, and her husband, Andy, as well as my incredible wife, Kath, all made the trip to Hungry Horse, Montana. We stayed in a cabin outside of Whitefish for three days and enjoyed spending the time together playing games and hitting the hot tub. Saturday,we left the cabin at three in the morning to make the three hour trip to the race start. The sky was so clear, but it was cold! Twenty miles to the race start, Kath asked if those were bugs hitting the headlights. To our surprise they were snowflakes. So Michael, Tiffany, and I started the run in the snow. It continued to snow for the first twenty miles, but after that the sky cleared and it was beautiful. However it never did get very warm (perfect running weather). Tiffany had severe knee problems and unfortunately had to stop at twenty-three miles. I was very proud of her to know that she should stop rather than hurt herself badly. Having been there.. .having to pull out of a race after you have trained for months and months is a very hard thing to do. I was also happy that she joined Michael and me at mile 47, so that we could all finish together (she had to skip and hop on one leg). It was great seeing all those individuals that had sent me e-mails and letters during my treatment. It really was very uplifting and gave me added incentive to finish. Michael now has finished two Le Grizz 50 milers and it was special having him by my side to share 50 miles of pain with! At the awards, Pat, the race director, called Michael and Tiffany up front and they got to present my Ten Bears Award to me. It was very special having two of my children present me the award. As most of you know, I would not have reached this goal of ten 50 milers without my wife being by my side, pushing and supporting me all those years. Also my wonderful family, Tory, Michael, Aaron, Tiffany, Brother Brad, Brother Chris, and my Mom have helped constantly encourage me. Thanks again to all of you that also have been supporting and checking up on me. Michael, Tiffany, and I wore shirts that we had made at the end of the run that states it all - NEVER LOSE HOPE!!

Wednesday was our day in Portland. It started off with a CT scan and was followed by an MRI. We then met with the doctors much later in the afternoon. We were given a GREAT surprise by our daughters, Tory and Tiffany, and our son, Michael, and his girlfriend, Amber, showing up at the appointment with the doctor. Them showing up brought a smile to our faces which even got bigger when we met with the doctors. One doctor called it a miracle, and the other doctor could not believe that the tumor had not grown and that there was nothing in the lungs. They decided that I do not have to be tested again for four months instead of three. I will continue to have these checks every three to four months for two years (since this is the critical time). The girls went out to dinner to celebrate with us. My plan is still to attempt to run my fifty miler in two weeks with Tiffany and Michael. I'm still finding it hard to believe that I was only walking half a block with a cane less than one year ago. I hope all is well with all of you. Thanks for checking on me.

September 14th

I hadn't planned on making an entry before my test on the 24th, but I have been very excited about the last two weeks. First, two weeks ago I completed the 12th leg of the hood to coast relay. My daughter Tory invited me to be on her team and I wasn't sure how my body would fair. But to my surprise and delight, I was able to run all three legs at the same pace and felt good at the end. The highlight of the run was being able to run the last two miles with Tory, although she had run three in a half legs already, she got out and ran the last two miles to seaside with me. Then yesterday I met my son Michael and his girlfriend Amber, my youngest daughter Tiffany with her husband Andy (and my wife of course) at Timberline lodge at 7:00 am. Then Michael, Tiff and I started the Timberline marathon, 26.2 miles for the uneducated. It consisted of running 23 miles on the Pacific Crest Trail with all of the rocks, roots, and hills...oh, what hills! I tripped and fell six times while Tiff tripped and fell three times. The scenery was gorgeous and it was one of the most beautiful runs I have ever participated in. The highlight of the run was, as well as the hood to coast, that I got to do an activity with my children. I was excited to see Tiff finish her first marathon, but I did ask her why she picked such a difficult one for her first. So today I am walking very gingerly. Now the next four weeks will be concentrating on getting ready for the Le Griz 50 miler in Montana. Hard to believe that eleven months ago I was only walking half a block with the use of a walking stick. I would not be at this point if it wasn't for all of my family and friends who have constantly given me support and encouragement. thanks again and I love you all.

Sorry it's taken so long to make another entry. Kath and I have been enjoying everyday, and not being computer savy it is quite a chore to figure out how to put in an entry. Things are going GREAT. Kath and I have spent many weeks at Black Butte. I have been running three days in a row and then taking one day off, then running three days. Every Saturday I run long with my oldest son, Michael, and my youngest daughter, Tiffany. As the miles begin to pile up, I begin to think of a goal to shoot for. As a result I am scheduled to run in the Timberline Marathon in four weeks. After that, I am shooting for my BIG one and plan to run my fifty miler the second week in October. Currently I am running between forty and fifty miles a week, so it appears I am on track for my goal. Yesterday, Tiffany and her husband, Andy, Michael and his girlfriend, Amber, and Kath and I completed the fifty-two mile wine and bike trip. We drank a lot of good wine, pedaled up HUGE hills, and had a great time! However, I did go to sleep at 6:30 that night. We're enjoying our new house. Had fun at the Olympic Trials with Harold and Karen. Kath and I attended a Sarcoma conference in Portland last month and learned lots of information. It is a little frustrating finding out that there is little funding available for sarcoma research. We did not realize that there were so many types of sarcoma. We also found out that it tends to hit quite unexpectedly....people are usually very healthy, exercise regularly, eat correctly....generally they have a healthy lifestyle. It hits like a bolt of lightning. They cannot identify any tendencies toward race, ethnicity, age, or sex. Needless to say, it was very interesting to find out all this information. There is a website that might be interesting for you to look up....it is www.team-sarcoma.net. One lesson we've learned through this whole affair is to live each day to the fullest and that is what we are striving to do. Oh, by the way....you wouldn't believe my hair....it is VERY curly and it is very unmanageable (it goes every which way). My mom keeps telling me how lucky I am to have curly hair, but no one would want to go through what I went through to get it. The next entry I make will probably be after the last week of September (after my next MRI/CT scan and appointment with my doctors). Here's hoping everything is going well for all my family and friends.