Echo Canyon in Utah
Denver Colorado
Near the Texas, New Mexico border
Posted on 12/23/2014 12:26:27 PM PST by Jeff Head
Well, I am very late entering this information and making this entry.
In early August we traveled to MD Anderson in Houston for our annual pilgrimage and to accomplish three things.
Mexico, and then across north eastern New Mexico to Texas and US-287 which we then take all the way down to near Denton, TX where we normally stay with our sister-in-law Brenda. Then, down I-35
to I-45 and down to Houston. Over 1,800 miles altogether.
We stopped in Amarillo and ate with a close friend, Caylin, there who is retired US Army EOD. We then stopped in the Sanger area to spend time with Brenda, my late oldest brother's wife who lives
out on the "place," where we grew up. It was a great visit, but short-lived because we had to get on down to Houston.
We arrived in Houston and over the next several days went through all of the appointments associated with my checkup. Blood samples, MRI, CT scans, x-rays, preparation for the radiation
treatment, and finally consultations with Dr. Rhines.
While doing this, on August 12, we took the time to visit it USS Texas, the historic dreadnought class battleship that served in both World War I and World War II and which is not a museum at the San
Jacinto State battlefield park. I had last visited it as a child when my Dad took us there in the 1960s. They have significantly refurbished her since that time and it was a very good visit. Gail took some pictures and a video of me climbing around on it (very slowly and carefully) in the 1000 degree heat. Hehehe...she wisely stayed in the visitor center where it was cool. There was no air conditioning on the ship where I was looking around.
Jeff climbing around on the Battleship Texas
The consultations went very well. could not have been a better report. The bone fusion in my spine and around the two struts made up of my left fibula bone placed where my sacrum used to be, or
as good as they can be...better than expected. The small tumors of Chordoma in my ilium continue to grow slowly, but are reaching a size now where the radiation treatment proposed by Dr. Rhines
is warranted. One area that they had thought was scar tissue since my surgeries has grown so they believe it in fact is a 4th small tumor and will be treated with the rest.
After this good news, we attended the conference, which itself was great. I always love listening to the several seminars during the day. Always good information...[particularly now over the years seeing new information and developments. Particularly good was seeing our friends. The Shaws, Mohammed and his wife and children (Mohammed had the same complete sacrectomy surgery I had a year and a half after me), and so many others, including Dr. Garvey (my bone/plastics Dr. for the surgeries), Dr. Fu (the rehab Dr. at MD Anderson who referred me to TIER), and Dr. Lieberman (the Phd Rehab Dr. who worked such wonders with me a TIER).
Also, we saw Mrs. Amiee and her mother. They were at the conference to accept an award on behalf of our good friend, Neil Aimee, who had passed away a month before the conference and whom we miss. I was asked to give a tribute to Neil at the conference and I was proud and happy to do so. Neil helped me a lot five years earlier when I was just being operated on and coming to terms with the disabilities and life after the surgeries. We talked each month thereafter and several of the times called him I was getting a Chicken Sandwich at McDonalds for lunch. He used to always joke with me about that. He told me towards the end that if he got to the Pearly Gates before me, he would have a Heavenly Chicken Sandwich waiting for me at the true Golden Arches when I arrived. I know he will...and though I miss him, I know, like with my parents and brothers and grandparents and others who have gone before, that I will see him again in a place without pain and suffering.
I will certainly not hurry that, because it is given to God to make such decisions...but I do not fear that day and look forward to it in God's own time.
After the conference we traveled back up to the Denton, TX area to spend the week before the radiation treatment. We had a wonderful time just taking it easy on the ranch and spending the time
visiting friends we have in the area (Gail and I lived around Denton for a total of 6-7 years during our married life). Gail and Brenda got to spend a lot of time together and accomplished a lot. We also were blessed to eat dinner with and spend several hours with our good friends, Trey and Patty Martino. Trey has been a life-long friend, and is as close to a brother to me as anyone could be who is not actually a blood brother. Through our mutual testimonies of Jesus Christ and our many years of relations and memories...the difference is virtually non-existent.
Then, it was back to Houston and the radiation treatment. Stereo tactic radiation is a process where they use a 3-D, highly computerized equipment to generate five beams of radiation and then have them converge at the tumor sites to give a large dose of radiation to the tumor, but to do so in such a way that the individual beams do not do appreciable damage to other tissue they pass through. They take the week between the preparation appointment (which they call a simulation) and the actual procedure.
We had tried this the year before...but it was unsuccessful because when they make the mold for you to lie in, they then pull a significant vacuum on you as you lay under thick, clear Mylar, so you will not move. That pressed my back into the mold they had made and in my case caused a lot of neuropathic pain as nerves were pushed against the titanium in my back.
So this year they planned to put me under each day for the procedure. This involved starting a little earlier and having an anesthesiologist team there to put me under...remaining under while they did the procedure for two to two-and-a-half hours, and then spending another hour to hour-and-a-half being brought back out of the "sleep," in recovery. Well, you cannot eat for twelve hours before the procedure, and when you add the 5 hours that all of that took, you end up with about eight hours to eat between procedures.
So, we would get done, go eat a light meal, and then about four hours later, eat a heavier meal, before going to sleep and coming in for the next procedure.
At the Radiation center we sat with and got to know numerous people who were coming in for various radiation treatments. Most of them were on 28-30 day treatment plans where they came in for 20-30 minutes of treatment each time. They would all go in and then come out again and leave while we waited, and by the time we got done, they were all gone. But we only had five treatments to do, where they had 30 or so. It was a good experience being there with them....getting to know them and their stories as we shared our own...and then praying for them each as they went through their procedures to treat their various cancers.
In such circumstances other differences pale and you come to know and love people without delving into the things that might otherwise divide you.
As we came in Wednesday for my third treatment, I have to say I was feeling VERY badly. Everyone responds a little differently to radiation. Some are more susceptible than others. Stereo tactic radiation, though it avoids too heavy a dose to vital areas, still deposits a very massive dose of radiation to the targeted areas. Your body does not like that. For everyone, radiation is a poison. Specific types have been shown to be more effective against different cancers...like with Chemo. But, like Chemo, they are poisonous to the system. I was once told, while my brother Greg was going through his fight with Lymphoma, that radiation and chemo are poisons that can and will kill you. The treatment plan is designed so that hopefully they kill or impeded the cancer before they do the same to you.
Anyhow, by the third day...for whatever reason...I was one sick fellow.
Dr. Macaleer, who is very personable and a very smart and talented lady, saw me there and asked how I felt. I told her I was afraid that the next day they may have to wheel me in on a gurney. She said, "Oh no, that wont do...we will take care of that." And they gave me some steroids in my IV that day that are specifically designed to help fight the side effects of radiation. I have to say...they worked! The next day I walked in under my own power feeling as good as I have felt in years.
But steroids also have side effects as they explained to me. You cannot take them too long, and they can make you just as sick in the end. They have treatment and impact curves and they try to design the steroid treatment to hit you with its positive effects as your system is experiencing negative effects from the radiation. Then they slowly take you off the steroids in the hope that its negative effects are less burdensome as they wind down, and the steroid's positive effects offset the negative effects of the radiation. Pretty interesting statistical and mathematical models involved in that.
Anyhow, I was able to get through all five days of treatment and still not feel too terrible from the steroids. Then, we headed home and had a wonderful trip back to Idaho.
One of the best things about these trips for me is that they allow me to spend two to three weeks with my dear, wonderful wife and sweetheart, Gail. In that way, despite the medical nature of it all, it is a vacation to me. Gail has been a strength, comfort, care-giver, sweetheart, and example and pillar to me through all of this. Not a day goes by where I do not emotionally thank my Father in Heaven for bringing her into my life 37 years ago, and for her goodness, kindness, and wisdom.
Now, it is December 23, 2014.
On the 20th of December I marked my fiver year anniversary since being diagnosed with Sacral Chordoma.
In February, we will have an MRI here in Idaho to send down to MD Anderson where they will look at the results and see what impact the radiation treatment had on he spots in my ilium (hip bones). It takes a good six months for any swelling or impact of the radiation to surrounding tissue to wear off enough so they can really asses what has happened with each of the tumors.
In the last three months I have had a couple of pretty severe infections. One was a urinary tract infection (which I had not had before) and the other was an infection in one of my teeth. I learned something new in each case.
Because of the long term pain medication I am on (methadone in my case) my normal ability to feel the results of such infections is masked. This is pretty academic actually, but I did not think on it before now. Anyway, because of this, by the time the infection became bad enough for me to feel it, it had advanced significantly and was pretty bad. They have both been treated an I am doing a lot better...but in the future, at the slightest swelling of a lymph-node or feeling in anyway out of sorts that comes with such infections, I will go into the Dr. to get checked out.
Our local Dr., Dr. McGuffy, who is a wonderful general, family practice Dr. has always chided me a bit for not coming in often enough. At our last meeting I told her she may get tired of seeing me and she said...no problem, you should have been coming in more often like I told you! LOL!
So, there's the latest update...stretching back four months! I will update again when we know th results of the February MRI!
'Til then, a Blessed and Merry Christmas and Holiday Season to all!
...and the very best of the New Year for 2015 to you and yours!
In Christ,
Jeff Head
December 23, 2014
Wonderful update!!!!!.......God bless you!
May the Lord bless you and keep you Jeff. So good to read the update. Merry Christmas and Happy New Year!
Thanks for the update, Jeff, and for the wonderful pictures! You look great!
Huh. Not bad for a feller who was supposed to be pushin' up daisies by now!
God Bless you and your family.
Merry Christmas and a very Happy New Year!
My best wishes and prayers for you and yours. May our Lord strengthen and comfort you in His Love.
I second the wonderful words of Tennessee Nana and Faith!
Thank you for this heartwarming story and I have faith your next appt. will be free of this cancer.
God’s blessing and healing touch to you and Gail.
Merry Christmas all.
Merry Christmas to you and your family. Stay handsome and keep fighting for you and the nation.
You look great!
Merry Christmas
Jeff,
Thanks for sharing the vast journey of treatment. Our very best to you this Christmas and look forward to many updates as you beat this affliction.
You seem to be a very tough rascal.
Merry Christmas, and Happy New Year.
God bless you and your family.
Thank you for the update.
Many continued blessings. Sounds like you and Gail are each quite fortunate in your choice of mates.
Prayers up. Merry Christmas!
God Bless you and yours, Jeff, and Merry Christmas, and many more!
Every day on God’s beautiful green earth is a blessing beyond compare!
Blessings on another Christmas.
Thanks for the update...
Continued prayers.
God bless you and Gail.
What you have been through is just awesome.
One can only hope we will have the strength
and fortitude you both have shown when our
time of trial comes.
Merry Christmas and a Happy New Year.
Your FRiend.
Tet68.
Thanks for sharing Jeff. You’re truly an inspiration to all those fighting cancer. Never give up! God bless and have a very Merry Christmas and a healthy and Happy New Year.
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