Jeff Head
be not dismayed; for I am thy God:
I will strengthen thee; yea, I will help thee;
yea, I will uphold thee with the right hand of my righteousness." Isaiah 41:10
Posted by Jeff at his Facebook page December 28, 2009
Posted by Jeff at his Facebook page December 28, 2009
Prayers said for Jeff and his family. I pray that God will touch Jeff with His Healing Grace. God’s Blessings
Jeff, thanks to good FReepers I got updates on you and you and your family are certainly in our prayers. We pray for complete recovery, for perseverance, for strength—through ou Lord, and for peace of mind and joy of heart.
Your posts have always been informative and a morale builder for me and I’m sure many others by the looks of this thread!
Great news. My hospital release is tomorrow! followed by out-patient therapy at Tirr, one of the top rehab facilities in the nation! The rehab Dr. here at MD Anderson did his residency there & our friend, Dustin Morgan, who is also a nurse here in the ICU, suggested it. He was guided by the Spirit to do so, because the Dr. here immediately latched onto the idea, and got it set up within hours.
They’ll focus up to 5 days a week & 4 hours a day on my specific needs and the insurance has already approved up to 50 visits at this very prestigious and hard to get into facility. My initial review with them is Friday w/rehab starting early next week. Although my co-pay for these visits is rather high at $75.00, I believe we have it covered enough to take advantage of this up to 6 weeks before coming home to Idaho.
What a blessing. Thank you all for your continued prayers because they continue to miraculously reveal God’s Hand in this for His own purposes. I’m just glad I’ll get to spend more time with my dear wife, my kids, & those precious grandkids.
My dear FRiends. Thank you again, from the bottom of my heart, abd God bless you all for all of your thoughts, faith, encouragement, prayers and help. I can never hope to repay the kindness but by pasing it on to others as I am able...which I most assuredly will always do.
I would ask that you please remember us in your prayers this week. On Wednesday & Thursday I have my 1st 3-month review with the Drs. It’s been 3 months now since the major surgery to remove my sacrum & the chordoma tumor. Rehab continues to go well, though hard, and painful.
Our hopes & prayers with this weeks review are that, after all the scans, MRIs and exams, that no new cancer will be found, and that the bone grafts will be taking nicely. As always, it’s in God’s hands, and His will shall be done...and will be for the best.
Here are the video links for the videos tracking my progress from the hospital through rehab to date. I have about 5-6 weeks more here in Houston before going home, should everything else prove ok:
Jeff in hospital on tilt tablt, 1st time at 90 degrees (6/8/2010)
http://www.facebook.com/video/video.php?v=410259679068
Jeff in apt w/walker, & taking some baby steps (7/15/2010)
http://www.facebook.com/video/video.php?v=412334544068
Jeff with walking sticks, walking bacwards (7/20/2010)
http://www.facebook.com/video/video.php?v=413951974068
Jeff at TIRR Gym walking (7/24/2010)
http://www.facebook.com/video/video.php?v=415145899068
Jeff at store in scooter cart (7/24/2010)
http://www.facebook.com/video/video.php?v=415148619068
Jeff gets to drive his own truck for the 1st time (7/26/2010)
http://www.facebook.com/video/video.php?v=415809724068
Jeff working in rehab without the walker (hard work this) (8/6/2010)
http://www.facebook.com/video/video.php?v=419079244068
Jeff’s hardware from his surgical rebuild. Amazing! (Posted 8/8/2010)
http://www.facebook.com/video/video.php?v=420202109068
Jeff walking on his own in the apartment. Short distance, but gratifying. (8/10/2010)
http://www.facebook.com/video/video.php?v=420649599068
Jeff using various canes and assists in Rehab, ready to move away from the walker. (8/12/2010)
http://www.facebook.com/video/video.php?v=422290409068
29th Entry August 23rd, 2010, 10:00 PM
Time continues to pass since the surgeries and the hospital. I have now been out of the hospital about 7 weeks and in rehab for over five weeks. It's been over three months since my last surgery on May 11th.
we are staying here in Houston a little longer than we had planned. The therapist I am working with at TIRR felt, and we felt that I would benefit significantly from continuing to work with him. He is a PHD level physical therapist and is helping me tremendously.
My difficulties arise not just from the atrophy of the muscles while in the hospital, but even more from the injuries they sustained while being cut through to accomplish the surgical removal of my entire sacrum and then the rebuild of my sacral area with titanium and my own fibula bone. Virtually every muscle in my lower back and hips were cut through. The attachment points for the glutes on the sacrum no longer exist so there will always be some inherant weakness due to it. This is why my rehab, especially for walking is so slow and hard and painful.
I am having to figure out how to use those muscles again, ones we take for granted in our normal life...and a bunch I didn't even know i had!
Here is a picture of the rebuilt area, so you can tell how extensive it was. They basically built a support structure around my lower three vertabrae and fused them with it, then extended it down into the sacral area and tied it to the new bone and the hips:
JEFF's SACRAL REBUILDAnyhow, the Drs agreed, we got approval for the extension at work, and the good Christian peoele, my brothers and sisters here at Faith Lutheran are allowing us to stay longer than the four month limit they normally impose. What a blessing and answer to prayer. I marvel at how doors have opened and things fallen into place for us and know it is due to the faith, prayers, love, and work of so many good people...and most of all, my Father in Heaven and Lord and Savior, Jesus christ.
So, we will leave Houston now on September 25th, drive to Denton that day and go to Church that weekend there...then then MOnday morning the 27th leave for Idaho. we hope to take four days and arrive home on the 30th of September, and then I would go back to work on October 4th, a Monday.
Lots stands between then and now, but I am making progress in my rehab. It has been difficult...and painful...but I am slowly coming forward. They have me walking with a cane and I am having to start all over at making progress in terms of distance and stamina, though I already have more than I had when I left the hospital for sure.
Here is a list of all the videos I have made to date since the hospital. They are on facebook:
Jeff in hospital on tilt tablt, 1st time at 90 degrees (6/8/2010)
http://www.facebook.com/video/video.php?v=410259679068Jeff in apt w/walker, & taking some baby steps (7/15/2010)
http://www.facebook.com/video/video.php?v=412334544068Jeff with walking sticks, walking bacwards (7/20/2010)
http://www.facebook.com/video/video.php?v=413951974068Jeff at TIRR Gym walking (7/24/2010)
http://www.facebook.com/video/video.php?v=415145899068Jeff at store in scooter cart (7/24/2010)
http://www.facebook.com/video/video.php?v=415148619068Jeff gets to drive his own truck for the 1st time (7/26/2010)
http://www.facebook.com/video/video.php?v=415809724068Jeff working in rehab without the walker (hard work this) (8/6/2010)
http://www.facebook.com/video/video.php?v=419079244068Jeff's hardware from his surgical rebuild. Amazing! (Posted 8/8/2010)
http://www.facebook.com/video/video.php?v=420202109068Jeff walking on his own in the apartment. Short distance, but gratifying. (8/10/2010)
http://www.facebook.com/video/video.php?v=420649599068Jeff using various canes and assists in Rehab, ready to move away from the walker. (8/12/2010)
http://www.facebook.com/video/video.php?v=422290409068>I know I have listed some of these before, but I wanted to get them all in one place for those reading.
we had our first three month review last week with MRIs, CT Scans, blood work, etc. We had a follow-up visit today. Everything looks good in the surgery area. The bones are beginning to fuse and the hardware is doing fine. No new cancer down there, but at six months they will do a more thorough check in other areas of my body. Dr. Rhines is an unbelievably talented nuerosurgeo and a fine man...as is Dr. Garvey, the plastics/bone rebuild surgeon. Dr. Rhines did a phenominal job with my nerves that has allowed me to walk, drive, etc.
There is still a lot of nerve related pain, and bone pain, and some of it will probably always be there. There is also the entire issue of bowel and bladder management.
In my case, the valve on the bladder has been left open. When any appreciable amouunt gets in there, it just leaks out. This means we have to take extra measures to catch it...and we do, but it also means every couple of hours if I use my muscles, I can force it out and not have to catheter at all, which is a great blessing because otherwise I would have to self-catheter 3-4 times a day.
Bowel management is difficult. We are trying the proscribed rotuine with mixed results. It's something you just live with and be prepared for. It's not what we imagined for life in these years...but it is life. I will be able to spend time with my wife, my kids and their kids. Jeff and Jolene (our number four child and eldest son and his wife) just announced their first child coming in February 2011. I am grateful I will be here for it.
Jared (our youngest child, who just turned 21) will come home from his mission for our church (LDS 2 Year Mission) in April and I will be here for that. I am so grateful, despite the disabilities, that I will be here for those types of things and be available to help, to experience, and enjoy them with my family for however long the good Lord sees fit, because it is, and always has been in His hands.
As I have said so often, I have so many people to thank and could never adequately thank them for their help, encouragement, faith and prayers. My wife has been an angel and I am so grateful, humbled to tears, and in love with her. Being raised in Texas, there is a saying that you should "Marry up." Well, I married up...way up, and i thank God for it. The best I can do, with any of this gratitutde, is to stand to and help others as I have been helped...just as the golden rule teaches us all.
I thank my Father in Heaven nd His Son most of all, for all of these things. I am so grateful to partake of Christ's sacrement again each Sunday and renew the promise and covenants I have made with them. I urge all people everywhere, whoever may read this account, to turn to them in your life, at all times. If you will, you will find that in times of hardship and difficulty thay are there for you. As you see, that does not mean the hardship and difficulty will not come...it does mean you will be empowered, whatever happens, through their matchless power and love, love, to have the strength and ability to get through it according to their will, and either continue here, or return to them there...both of which are blessings. Maybe just barely, you will get through...but to get through nonetheless, and to thank God for it on the other side.
I will provide more updates as I make progress and experience things related to my recovery that may help others, either who are going through similar experiences, are to understand those who do.
Sincerely, and as always, in Christ,
Jeff
I am calling out to Jehovah Rapha for you again today!
http://www.jeffhead.com/chordoma.htm
The Lord has been very good to me.
Here is what I said:
A year ago today I was diagnosed with a sacral chordoma. It is a very rare, very serious, malignant bone cancer tumor. In my case it required the complete removal of my sacrum bone (that attaches your hip bones to your spine) and a rebuild of my pelvic area down in Houston, Texas, at the MD Anderson Cancer Center. That was accomplished in late April and early May through three major surgeries. I was released from the hospital around July 1st in Houston, and then stayed on in Houston in fairly intensive rehabilitation through September, 2010. I returned home on September 30th and started back to work on October 5th. I am now working full time.
The last year has been life altering to say the least.
I wanted to sincerely, and from the bottom of my heart thank everyone who has encouraged us (me, my wife Gail and our family), prayed for us, helped us (with shared leave, funds, or in any other way), and exercised their faith on our behalf.
To date, the good Lord has determined that I shouldl stick around a little longer on this earth, and I am back at work full-time, walking less and less with the cane (and it is significant that I can even walk at all) and moving forward with life. In the end, I give all credit to God above, but must also thank so many others who have had a hand in it, especially my dear wife who has been angelic to me throughout this entire experience. I am one of those individuals very, very blessed to have married "up"...far beyond anything I could have imagined.
Here are a couple of videos of me walking without my cane recently that I thought those who have been following this might be interested in:
The recovery and rehabilitation process has been long and difficult and it continues to this day. In addition to the pure physical difficulty, there are emotional difficulties as well that I have become so familiar with, which troubles I had never experienced with respect to such worry and concern over my ability to provide for my family and progress and recover to be able to do that fully. As time goes on, and it becomes apparent that though you are recovering, and that that recovery has been miraculous...there are things that will never be the same and that will have to be lived with throughout the remainder of your life, there is an emotional impact.
I want everyone to know that that emotional pain is real, and at times it can be debilitating...just as debilitating as the physical injuries.
I am blessed with a lot of help in this regard, both from family and friends, and spiritual. It has helped bouy me up through these experiences...but I want to make sure and note for all, and without any shame in doing so, that the emotional struggle to come to grips with a new life is real and it is a deep, hard struggle. Please, please, never take it for granted and never forget it when you see people or know people who have gone through such trauma. If they have something to do (like a job), if they have something to focus on (like family, faith, hobbiesetc.), if they have love in their lives (knowing of God's and Christ's love for you, family, friends...a pet for example), then they can be helped significantly in making progress and ultimately recovering from those scars as well.
I needed to say that...it is a part of this I have not talked a lot about, but a part that is real and important to understand.
One of the areas that helps is (as I said) support from family and friends, and having love in your life. One of the sweetest parts of remaining here in life at this time, as I go through this recovery, is being able to sit with, talk with, play with, and influence my grandkids for the good. I literally held onto and looked forward to that...and now we are living it. We have six grandkids now and two more on the way by Spring, so I will get to see those two as well...and hopefully more as the years go by.
Anyhow, on this "anniversary", thanks to each and every one who has helped, encouraged, and in any way thought and wished the best for us. Particularly the prayers...I can tell you that they all helped through some very difficult hours, days, weeks, and months. I cannot adequately express or repay...but I can do all in my power, as I am able, to express my gratitude and try to help others.
Sincerely, and in Christ,
Jeff
A willingness to express these sentiments as a people, and to live according to them, is what produced our heavenly inspired Constitution and allowed us to prosper accordingly these many years.
We depart from it at the peril of our liberty, and ultimately at the peril of our very life.
Here's my latest update, I also posted as a seperate theread earlier:
A little time has passed between this entry and my last one. During that time I have continued to make progress in my rehabilitation, and to continue to mentally and emotionally come to terms with my new life and condition.
As to my rehab, I am walking pretty much all the time now without any assisted device, including my cane. I am finding that I am getting more and more stamina as the weeks pass as to how long and how far I can walk, but progress and improvement are defintely being made, however slowly. I still have a bit of a hitch in my left hip as I walk, and it drops down when I take a step because there is continued weakness in that joint. There may always be. As time goes on and those muscles slowly build, it will improve. In addition, on my right side, my foot itself has a greater loss of sensation than my left and my calf muscle is weaker there. Getting up on tip toes still alludes me, but I am working with that every day as I go up and down the long stairs at work and again, making slow progress.
Here's links to a couple of videos of me walking in February without the cane around town:
It's really heartening for me to see these videos and then compare them to my progress last June and July (of 2010) as I came out of the hospital. Whenever I am frustrated or think the progrewss is too slow, I just compare the videos to see how far I have come.
One of the most important reasons for this update was because last week we went to Houston and MD Anderson Cancer Center for our next big checkup.
The flight down and sitting in airports and on the plane on those seats was not too comfrotable for me, and I had quite a bit of anxiety...more about the trip itself and dealing with my disabilities, particularly bladder and bowel function, away from home and in the hotel. But we did it, and my wonderful, dear, lovely wife, Gail was there for me, as she has unfailingly been throughout this entire process...along with the prayers, faith and love of so many friends, and I was able to get through all of that.
The MRIs, CT Scans, blood work and consultations all went GREAT! On Thursday, February 24th, we met with Dr. Rhines.
He was almost estatic and very excited as he explained to us, and then showed us on the computer the progress my bone fusions are making. The bone fusions are ahead of schedule and doing better than expected.
There was no new cancer in the surgical area or the soft tissue and this was a hugely positive and good report as you can imagine. I still have three very small areas of chordoma cancer in my hip bones (illium) but they were there when they discovered and removed the large tumor in my entire sacrum. The Dr. is not too worried about those, and did in fact see another very small spot on my illium that is similar. But they are all growing, if anything, slower than expected and are very slow growing to begin with...as in years.
In September, at the next checkup, we will determine how to treat those. If there are no more that arise, we will use stereo-tactical radiation, which is a very high dosage, focused very tightly and accurately at a very small area. That process can be done in a day or two once they get everything programmed and set up and has proven effective. If a bunch more show up, we would use the general proton radiation, which is much more broad and a longer term (7 weeks of treatment, twice a day, five days a week for seven weeks). It has also shown itself to be effective, particularly in retarding growth. We hope that is not necessary because there is risk of complications from it, particularly in weakening the bone.
Dr. Rhines and Gisella were very excited to see me walking and feel I am making very good progress there as well.
All in all it was a VERY positive report and trip. We went out and ate at Luby's Caferteria in celebration and it was very good. We retunred home on Friday, February 25th, 2011.
So, we are thankful to our Father in Heaven and His Son, Jesus Christ, for their tender mercies to us in these circumstances. It is not what I would have picked...but it has been for the best. Our love and faith and the faith of so many others has grown and that is one of the most important things that can happen in life...a price cannot be placed upon it.
Every circumstance we face, particularly the difficult ones, gives us the opportunity to grow more, to love more, and to develop our faith. It is what God intends for us and is what life is all about. I am thanksful for that knowledge and am secure in my faith of Jesus Christ and know that one day, in His time, we will all experience a glorious resurrection where the ills and sicknesses and ails of this world will be behind us, and we will benefit from the love, faith, and experiences we have had and that benefit will be forever.
In the mean time, I will continue to document this experience to all who will read it. Ultimately, perhaps starting soon, I intend to turn it into a book. I believe a book about all of this will benefit others as much as, and perhaps even more than these blogs. At any rate, that is my thinking at this point. It is called, "An Unforgiving Temper," by Gail Head. Here's the link:
God bless you all, and again, from the bottom of my heart, thank you all for your encouragement, your faith, your prayers, and your love.
Sincerely,
Jeff
We will know by Tuesday the results and are hoping that no new cancer has developed.
On Wednesday they have a large Chordoama Cancer Awareness Day. They have this each year and we were priveleged to attend last year just before we left Houston. Yes, it's been a year ago that we were completing rehab and leaving Houston to return home.
This year, they have asked me to take part and be a part of a threesome presentation specifically about my condition. Dr. Rhoines, who is known world-wide as an extremely talented neurosurgeon specializing in the back and an expert on Chordomas, and who is the head of the Spinal Nuerosurgery department at MD ANderson, will give on part of the presentation. Dr. Abraham Lieberman, the PHD Rehab doctor from TIRR Rehab in Houston (the same facility that treated the congresswoman from Arizona who was shot), will give another part of the presentation, and then I will be giving a portion from the patient's perspective.
I am grateful and happy to take part. I know the good Lord preserved my life to witness for Him and His Son, and to try and help others, which I believe I can do with this presentation. Some of the greatest help I have received, outside of the love and faith of my wife, family and friends, has come from individuals who have been through this ordeal who befriended me and helped me know what to expect. Anything I can give back in that regard will be great, and a blessing I hope to others facing the same or similar circumstances.
As for as how I am doing...I find that I am still making slow, measured progress in some areas. HAve plateaued more or less in others. I am healthy and not in a lot of pain, but still on the medications. My strength has slowly increased, but it would take several months of pretty relentless rehab and exercising to continue improving beyond where I am. I am not walking at all with a cane, but still have a hitch and weakness in my hips and abductors. Thing is, after a 10 hour work day, I am generally pretty worn out and just am not up to exercising...hopefully, in time I can work it into my schedule to continue the improvements.
The bladder and bowel regiment has worked fairly well for me. No major difficulties...but the whole thing is still something I am dealing with, and struggle with because of concerns of what might happen if I have difficulties (either infections, blockages, etc.) I am grateful for how I have been blessed though, because I have been a year and three four months since the surgeries and have not had any major difficulties.
Beyond that, here are a few more recent videos of me. One is me doing a short little jog, inside, and the other is when I attended the Cancer Society's "Walk for Life" in our community in Emmett. That was a lot of fun and is something that is humbling as so many people, who themselves may not have had cancer, but whose life has been touched by it on one way or another, get together and help those of who have it now, or others who will contract it in the futre.
Jeff doing a Jog in June 2011
http://www.facebook.com/video/video.php?v=10150286269609069
I will make another update after we get back from Houston to let people know what we find out.
until then, once again, my sincere and humble thanks to so many who have exerted their faith in God on our behalf, prayed for us, encouraged us, or in any way helped us through these difficuties. may He who is mighty to save return the blessing to you and yours ten fold.
Sincerely and in Christ,
Jeff Head
September 9, 2011
Prayers up for continued healing.
Texas gonna put ya back on your feet again.
Jeff,
I live in Houston, freep-mail me if I can be of any assistance for any advice or any thing. I am a 4-year cancer survivor from stage 3 adenocarcinoma, now cancer free. Mrs. FE is a 1 1/2 year survivor of stage 2b breast cancer, also now cancer free. She is a patient at MDA. We know a lot about what is available to cancer patients in this town.
The best advice I have is to watch for the miracles. No doubt you have seen many already. The fabric between the spiritual world and the physical world becomes so thin at the trying times, you get to see God in action. Best wishes for a speedy and complete healing, and God Bless.
With regards,
FE
Thank you for the update, Dolly. Freepers prayers are very powerful. Tell Jeff we love him and are with him in spirit.
And if he missed Obama’s speech last night for ANY reason, that is one blessing for sure. :-)
Someone close to me just had "inoperable" pancreatic cancer surgery employing a technique that is new and stunning in results. His tests now show no remaining cancer cells. It is indeed a miracle, a gift from God. Few people beat pancreatic cancer.
Leni
Prayers always!
Wow, what a whirlwind trip down to Hopuston and back and so many experiences.
First of all, let me say that all of my tests came back in good shape. The CT Scans showed the bone fusions have grown even strnger around my lat four fused vertebra and where my former fibula now attaches to the base of my spine and to my hips. Of extreme importance, the MRIs showed no new cancer in my soft tissue, and showed that the very small spots on my hips had grown very negligably or not at all. This is all very good news. With no new spots on my hips and with very very slo growth, they seem to be chordomas as well (as thpught, though we have not had a biopsy and would prefer not to "bother" them) and this leads us to probably using the sterotactcial radiation to treat them next time we go to Houston.
The plan now calls for them to give me an MRI here in Boise a few weeks before we travel to Hosuton and then go there with a plan, if things are similar as now, to get that done while there. It is a procesds that once set up will require one or two out patient visits during the 4-5 days we are down there.
Once again, our eternal thanks to all of those who have prayed and exerted theior faith on our behalf in this journey.
The trip down was something. We flew out of Boise at about 2 PM on Saturday, September 10th, with a 90 minute layover in Minneapolis. In Minneapolis, our flight was delayed...and dealyed...and delayed. We left there four hours or more late. This is worse for me because 1st, those aiport chairs are not the most comfortable when you have no sacrum (or tail bone) to sit on. Second, because it really disrupts my schedule for eating and taking care of myself and tends to cause significant anxiety as well as potential problems with my diet and schedule. As it was, we finally got to our hotel room near MD Anderson at 2:00 AM on Sunday morning. We slept until noon!
That day we visited my dear Aunt Esther who is my mother's sister and the only other surviving member of that wonderful family. She and her daughter, my cousin, Cynthia, live together in their home and we had a wonderful visit with them.
Monday I had my tests as well as the initial consultation with Dr. Rhines. We started at 6:30 AM at MD Anderson. Since I had a CT scan, two x-rays and an MRI scheduled, I just left the hospital clothes (blue shirt and pants) on all day instead of changing in and out of them four times. Every things went well. We had a wnderful visit with Dr. RHines and Gisela, his chief nurse practioner. As always they are so personable and gracious. Since we had not had the MRI yet, we could not find oput about the cancer, but the CT Scan looked great. I showed Dr. Rhines my "jogging" there in the hallway and he was estatic.
We met with the radiation oncologist and talked about potential course of action as out lined above. We then went for the MRI at 5 PM. Again, interminable delays. We did not get done with the MRI until well after 9 PM. That was a busy day. I have to say I was pretty worn out after the Saturday trip and the Monday tests. Gail as always, took great care of me and helped me through. She is my eternal angel.
On Tuesday we took it easy. Slept late again. Then, late in the day, we met with friends at their hotel who had come in for their tests and the large Spine Tumor Convention the nest day which we were staying for and which I was presenting at. These friends, Wiley and Sharon Shaw, and another couple, Steve and Linda, were folks we had met while I was in the hospital last year who also (Wiley and Steve) had had sacral chordomas and also had to have parts of their sacrum removed. We have grown good relationships and call and network with one another regarding our conditions and issues we face. I am so grateful for them...just another of God's tender mercies to us.
On Wednesday we met all day at MD Anderson. Started at 7:30 Am with breakfast and then had meetings and presentations all day, with dinner from 5:30 to 7 PM. I enjoyed the day immensely. They had very comfortable chairs for us. My Physical Therapist, Dr. braham Liberman gave the first presentation. He was a God send to us last year and helped me so much. We patients refer to PT, instead of as Physical Therapy, as "Physical Terror." It hurts so much! But it has to and though we jokingly say that, we are so grateful for what it does for us. Dr. Liberman was and is unbelievably knowledgable, and so very personable. I thank God in Heaven for Him and his help and we have become good friends.
Then I gave my presentation about my journey. OUr life as we knew it before, discovering I had a problem and ultimately getting it diagnosed. The surprise and difficulty of dealing with that diagnosis (as described in this journal), getting with MD Anderson, preparing, going through the dramatic surgeries, getting through the hospitilization and then the rehab...and finally coming home and coming to terms with our new reality. The faith that has seen us through and which we try and share wth others in similar circumstances. I am so thankful for the opportunity to try and help others.
After me, Dr. Rhines gave his presentation about spinal, brain, and sacral tumors and focused on my case. He is a very smart man...really, a genius, and in addition to being a renown neuro surgeon, he is as personable a man as you will meet...and a GREAT engineer as well given the structure he designed that now resides in my back. It was a great presentation. We later were able to meet with him after he saw my MRI and gve us the good news about that outcome. No new cancer and little or neglible growth in the very small (pin head sized) spots on my hips.
Later in the day, Dr. Patrick Garvey presented the challenges of plastic surgery as it relates to designing structures and using bone and tissue to help in these very massive and complex surgeries. It was amazing. He was the one who took one of my abdominal muscles and skin tissue covering it, and used it as a patch for the huge wound in my back from the removal of the malignant sacrum. He is also the one who took my fibula from my right leg and the new blood supply (veins) for it from my left leg, and inserted that bone as a strut in my back. That's why the bone fusion is so critical. Ultimately that bone fusion around those bones and around my fused vertebra will be what holds me together. Otherwise, even the titanium will wear out and ultimately fail without it. He and his team did a great job on me and he also focused on mycase...showing some pictures we had not seen of the procedure. Another grweat, personable, intelligent man who was there wheen we needed it most.
For those who have not seen it, this is a picture of how my back looked a few weeks after surgery with all the new hardware and bones. Now, around the hardware and the fibula, new bone has grown and fused, making it all much stronger:
The last presentation was from a young woman who had discovered she had a bone tumor that took a large part of one of her hips and part of her sacrum. She discovered it in the final stages of her pregnancy with her first child. What an inspirational presentation! She helped us all see, once again, that through faith and determination, and a will to accept our condition and make the most of it, there is a wonderful life after these experiences. I was so grateful for her words and inspiration.
Dinner was marvelous. There had been perhaps a hundred patients and their spouses or care givers from the conference and probably 60 or more ate dinner with us all. Dr. Rhines and GIsela presented me with an award and a plaque. It states,"Heart of Faith and Spirit of a Warrior. To Jeff HEad for sharing his journey with others through faith, the will to fight, and fulfillment." I immediatley asked to say a waord and all I could do was dedciate that plaque and sentiment to my wonderful, dear wife, Gail. I try, and I hope to help others...but many times there is a thin covering between that will and desire to help and other feelings that would get me down. Gail has helped me through that and been the real strength and I have to thank my Heavenly Father for her and let others know.
That whole day was great and we are determined to attend these conferences each year.
We got to the hotel late, went to bed and then arose on Thursday, Sept. 15th to head home. The trip home was long, but no delays. We had a four hour layover in Salt Lake City and about a mile and a half walk between terminals. I went a good ways and then we had to sit and rest. I was pretty worn out from all of the activities. Gail got a young man, an attendant there at the airport, and he ended up wheeling me the rest of the way to our terminal. A very fine young man whom we thanked and asked God's blessings upon. For some reason, in Salt Lake, they do not have the electric carts to take people around in. They determined the safety hazards over rode the benefit I suppose. I for one, wish they still had them.
So, here we are back in Idaho. I mowed the lawn yesterday, am heading for the dump today and will take my grandsons to the movies this afternoon. Wish the granddaughters could come...but there other grandmom has claim on them this weekend and that is completly understood. I am so thankful for our family and the time we all spend together. It is what life is about and those relationships, along with our faith, are some of the few things we acquire in life that we can take with us. Cherish them and spend as much time as you can building them.
Again, thanks to all, I will continue to update things as they occur.
Sincerely, and in Christ,
Jeff Head
As I wrote you, someone near and dear to me is fighting the good fight also.....and we in the family take heart from your faith, courage and good spirits.
Bless you and yours, dear freeper friend.....
Leni
Today marks a significant anniversary in my life, one that I certainly did not know was coming, did not wish for, and yet one that came in its time and has very significant impact on my life and will continue to do so for the rest of my life. Two years ago today I got the diagnosis that I had a malignant sacral chordoma in my back. It was what had caused so much pain, searching, discomfort, and disruption to my life for a couple of years before, gradually increasing in intensity and impact through that time.
That diagnosis started Gail and I on a path in life we had never trod before. The tumor was literally filling up most of my sacrum (these tumors are slow growing and it had been in there for at least 20-25 years according to my Nuerosurgeon, Dr. RHines) and on the verge of spreading beyond. Chordomas, once they get into soft tissue are much more agressive. They do not respond to normal radiation or chemo therapy. We were referred to and accepted at MD Anderson Cancer center in HOuston and immediately (within a few days after Christmas) drove to Houston for our intial meetings. we thank God that the surgeons and neurosurgeons here rightly recognized the need to have this taken care of elsewhere. There are only 3-4 places in the country equiped to address this disease, particularly at the advanced stage I had.
My options were simple, either undergo massive and radical surgery to remove the entire tumor and significant margins around the tumor, or go into pallitive care and let the cancer take its course. The surgery would be massive, itself life threatening, and would leave me signficantly disabled for the rest of my life. Walking would be in question, normal bowel and bladder fundtion would be severely imparied, nerve damage and feeling in my lower trunk and down my legs would be significanlty impacted. Pallitive care would make me as comfortable as possible, but once the cancer destroyed those same nerve roots that the surgery would take, I would face the same prognosis.
After a lot of prayer and consideration, and a lot of counsel from family, freinds, medical professionals and through our church, we made the decision that was evident to me from the get go...we chose to strive for life...whatever life the good Lord deemed for us.
And so it went. It was very difficuly. We had wonderful family, friends, neighbors, mebers of our congregation, acquantences all over the country, and people who heard of our plight pour out their love and faith on our behalf. That strength, coupled with our own faith and love of our Savior and Father in Heaven allowed us to face the struggle with faith in God, knowing His will would be best.
It has been hard and continues to be so. The cancer had spread and I have three small spots in my illium (hip bones) that will soon be addressed by a special proton radiation technigque that is highly concentrated and very exacting. These small tumors, like the other, are slow growing, but need to be addressed and it looks like in March of 2012 we will do so.
I write this now, two years later, after all that built up to the surgeries. The continuing pain, the reaction to some of the medications that sickened me terribly, the hospitilization shortly before leaving for the surgical dates in Houston that almost put everything off. The three major surgeries in about three weeks time that involved 36 hours of surgery and transfusions equal to over four times my entire blood supply. The three months of hospitilization and slowly coming out of the 3 weeks of intinsive care. Being taught to sit up, being taught to take care of my bodlly functions and the type of diet I would have to be on from now on. Being taught to stand and walk again...first with a walker, then with a cane. The three months of intensive rehabilitation and improvements in my ability to stand and walk...and now the extended time back home and plateauing where I walk without a cain and drive where I need to go.
I will never hike the mountains again, my walking is not altogether rock solid or steady, but I can do it and I can work and provide for my family when all of that was in question.
Prayers have been answered, faith has been confirmed. Not that I have been miraculously and completely healed...but I have been miraculously treated and enabled, for God's purposes to continue my life, to be with my family, to see my children continue to grow with their own families and careers. To witness tow morew granchildren be born and have them now toddling around when visiting us playing with and sitting with their "papa". Taking oledr grandkids (we now have eight altogether) to movies and for drives, having them help me go to the "dump."
Spdneing more time with my dear, wonderful, and angelic wife and best friend and sweethjeart.
God's hand is in each of our individual lifes. In the good times and in the difficult times. His Spirit and Hand are there, if we will humble ourselves and reach out to buoy us up and guide our feet. He has apurpose for us, and that purpose, no matter how difficult is absolutely what is best for us because we touch others and help others as we get through the experiences as best we can and with His help, irrespective of the outcome. I know that a big part of my survival is to witness these things to others. To give hope...and to take hope as I see others, more severely impacted than me, struggle on valiently and themselves help others, including myself, in their trvails. I can do no less.
Thank you, from the bottom of my heart, to all who have exercised their faith in God on our behalf, who have helped us, encouraged us, prayed for us, and been there to whatever extent possible. I thank God for you each every day and witness His Hand in all of this for His purposes and for the betterment and enrichment of all involved.
Please read my entire journal...HERE on my site...or the PRAYER THREAD established for me at a conservative forum of which I am a member.
May God return the blessing to you each, ten fold for the tender mercies and help and encouragement and faith you have given.
Sincerely and in Christ,
It's hard to believe that two years ago today I was completing my third and final surgery at MD Anderson in Houston, TX, to remove my entire sacrum. I remember distinctly a lot about that experience, and then of course there's a lot I do not remember because I was really pretty out of it on the pain meds.
I was in the ICU another two-three weeks after that last surgery, having already been in the hospital sinec April 27th, 2010, when I came in for my 1st surgery. That one was about 10 hours long and went in through my abdomen to prepare for removing my sacrum and the chordoma tumor which had filled it up. They took my right side abdomen, including all of the muscles and skin tissue, and pushed it through to the back of my body to prepare for my 2nd surgery and use it to cover the wound that 2nd surgery would create. They also rearranged my intestines and rectum a bit to prepare for that 2nd surgery. They then went to my legs and on my right side cut through my fibula on both ends until it was barely hanging there so they would be able to easily remove it and use it during the 2nd surgery.
Then, three days later, on April 30th, 2010, they conducted the 2nd surgery which was the most major. It was over 18 hours long. They cut in through my back, making a circular incesion down low on my back with straight parts coming up half way up my back on the top, and then clear down to my recttum on the bottom. This was necessary because of the massive amount of work they had to do. They cut through all of the muscles tissue there, including mu glutes to get to the sacrum and open up enough to expose my entire lower spine. Then they went through the painstaking procedure of cutting out the sacrum and all of the nerves and nerve roots associated with it. A very bloody, and a vry intricate surgery requiring very special neurosurgeon expertise. I thank God it was Dr. Rhines doing it.
Part way through apparently they nicked a large blood vessel below the sacrum which began bleeding badly. An anesthesiologist noticed the drop in blood pressure but the surgical team could not get to it to repair it until the sacrum was out. So this individual pumped blood through me to keep me alive while all that was going one. 41 units of blood was used...about six times your entire blood supply.
Ultimately they got the sacrum out, repaired the blood vessel, built the lattice frame work of titanium around my last three vertebrae for support (which is quite the achievement itself...looks like a miniature Eiffel Tower, again thanks to Dr. Rhines)...but, then because it had gone so long, they determined they would have to do a thrid surgery to place the bone from my leg (the fibula) in as a strut support fot the other work they did. So, they used the abdominal tissue they had prepared and covered the wound with it, and stitched me all up.
It was then 12 days before the third surgery. And that was the third and final surgery which I celebrate today, May 11th, 2012. Another 9 or 10 hour surgery where they cut back into me the same way they have gone in on April 27th, and then took my fibula and a blood supply for it from the other leg, and built a spar that connects my two hip bones to the bottom of my spine and the titanium structure there. They used long titanium lag bolts to attach the bone to my hips and then used bone dust made up from scrapings of my own bone and other bone supplies so that when mixed with my plasma it would stimulate bone growth around the areas of the bones that were joined togewther and all around the titanium structure. This bone growth would ultimately be the principle support my body depends on because the titanium would otherwise wear out in ten years and have to be replaced...and I do not want to go through that again if I can at all avoid it.
So, here I am two years hence. What a blessing it has been.
I know the good Lord, without doubt, through the faith and prayers of so many family, friends, relatives, neighbors, people at church...at many churches...and friends at work and folks from all over whom I don't even know, prayed for me, and through the expertise and very hard and compassionate work of my Dr.s, nurses, attendants, therapists, etc., and because God in Heaven, for His own purposes, preserved my life. I promised Him, as a result, that I would witness His name and that of His Son for their love, compassion and mercy towards me.
I can walk on my own, without any assistive devices. I have been working full time since I got back home in October of 2010. I am providing for my family and working toward retirement. As a result of a leave share program (described above) where I work, I never missed a day of pay, and was never on disability. I have seen two new grandchildren born who are both over a year old now and walking and so much fun. I was able to see our youngest son return from a mission for our Church from Canada and begin getting on with his life and future. I work with my older grandsons building 1/350 scale models which brings a lot of satisfaction and joy. I am able to still mow the lawn with our riding mower and take our garbage to the dump each week. I spend a lot of time with our ids, grandkids, and with my wonderful wife, Gail, who herself saved my life during those long, long weeks in ICU and the hoospital and through rehab.
I have been to a lot of movies since being back, more than my whole life combined before, enjoying them with my grandkids, my own grown children, and most especially my dear sweetheart and wife, Gail.
Here's the link to a video on Facebook I recently took on Mother's Day, of two of our grandkids playing as their families visited us to celebrate Mother's Day with Gail:
http://www.facebook.com/v/10150829557379069
Life is so good! How blessed am I to be able to witness these moments.
I was able to give a very neat presentation at MD Anderson last September when we went back for our checkup in Houston. Dr. Rhines (my principle physician and neurosurgeon gave a presentation, Dr. Garvey, the bone Dr. who worked with getting the bone out of my leg and building it as a strut to help support my entire pelvic ring also gave a presentation. Dr. Liberman, who was my physical therapist ater I got out of the hospital for three months and whose expertise and manner of working with patieents helped me so much walk as well as I do, also gave a presentation) I was honored and blessed to be used as an example for others in this whole process.
BTW, I am convinced without Dr. Lieberman's particular way of working with patients and great knowledge of the physical body, I would not have been able to progress so far. We stayed an extra month in Houston to take advantage of that expertise. In retrospect, if I had had enough leave and time, another three months with him would have made even more difference...but in the end, we have what we have.
Here's a link to a short portion of my presentation that MD Anderson put up on YouTube:
http://www.youtube.com/embed/6G5G8Y9M8CY
And here's a link to the entire presentation on the MD Anderson web site. I would urge anyone interested in these types of life altering and saving procedures to watch it all. Here's that link:
Finally, we are at a point now where every six months we will do our MRIs, CT Scans, and blood work here in Idaho to be sent to Dr. Rhinse at MD Anderosn for review. If need be, he will then call us down there. If things are clean, then we will wait to the next check up and go to MD Anderson once a year, in the late summer/early fall, in September each year...probably for the rest of my life.
We know that there are three very small spots of cancer on my hip bones. Have been from the beginning. It is likely that this Spetember that they will arrange to treat those with stereotactical proton radiation to retard or eleiminate them.
They are chordomas and very slow growing as long as they remain in the bone. If we can retard or eleiminate them, then it is likely that they will not cause me any problems for the remaineder of my life. Then the key thing is to just continue observing the soft tissue around the margins of where the main tumor was removed in the hopes that nothing comes back.
So far, so good in that regard. But in the end, all of that, in my estimation is in the Lord's Hands and we will face whatever it may be when it happens. We hope that no more will come along...but will deal with it should it be so, with faith in our wonderful MD Anderson medical professionals, in one another, in the faith and prayers of family, frineds and others...and most importantly with a steadfast faith in our Savior, Jesus Christ and His Father, our Father in Heaven.
As it is, I have been richly blessed to enjoy the time I have since these momentous events and thank God in Heaven, my dear wife, Dr. Rhines, Gisella, Dr. Garvey, Dr. Fu, Dr. Lieberman, and too many nurses, attendants, and therapists to name. Also, thanks to my dear friends and partners in the Chordoma experience, Neil, Wiley, Mohammed, Steve, and Scott who have suffered and lived through these same types of experiences. Networking with and befriending those who have experienced these same things, and helping one another, has been a critical part of the recovery and ongoing process...and a very helpful and enjoyable one. Finally, thanks to all of our family, friends, and others (particularly many on the facebook and on forums on internet) who prayed for us and encouraged and helped us. Life is good, we can all make the best of it, whatever our circumstance and help others as a result of our own experiences and walk in life.
I will add to this journal now with any major events or findings, and at least each year in the September time frame as I have my major checkup.
Sincerely and in Christ,
Jeff Head
Emmett, ID
May 11, 2012
Prayer bump
Prayers for you, dear FRiend!!