An overdue blog entry (as told by Jeff)

We told ourselves we’d update it as soon as we got back from Houston in late July (a great time, by the way, to get as far away from Houston as possible). It didn’t happen. We said we’d update the blog the minute we got back from our six month checkup in late October. Truth be told, we talked about updating the blog every couple of days since the beginning of June. I realize now that we’re only lying to ourselves.

Aside from Marisol’s wonderful letter in late August, we’ve written bupkis. So here’s what’s been going on, or not going on, as the case may be:

The six month checkup was mostly positive, though I think both Mari and I underestimated how emotional and anxiety provoking it would be to go back to M. D. Anderson again. Our Houston-based friend Amanda Ross, whom Marisol met in the surgical waiting room in June, calls the hospital “the halls of sorrow.” Her husband Brian, who recently had a checkup there as well, told me it was the first time he had gone back and not felt like a patient. Those words gave us hope, and a glimpse at what it’s like a little further down the path of recovery. We still feel like we’re waiting for the other proverbial shoe to drop. Still, it was great to see them and our other Texas friends.

After a series of tests and scans (blood work, CT, X-rays, ultrasound MRIs) that began at 6 AM and ended nearly 11 hours later, we learned that there is no new suspicious growth and that the abscess caused by the infection near the prosthesis seemed to be gone. Both items are important. If the infection comes back they will remove the prosthesis in my hip and not replace it. That would mean I probably wouldn’t walk again. And the lack of any evidence of suspicious growth is important because the type of chondrosarcoma I’m battling has a really high recurrence rate and a lower than 50% survival rate over five years. It can show up in the lungs, spinal cord, skull, or other bone or soft tissue, even after procedures like the radical resection of bone that I had in April. The only not-so-great news is that I have a couple of blood clots in my right leg and an infected left toe. The clots don’t appear to be very serious and are being treated with a blood thinner instead of emergency surgery like the one I had this summer. As for the toe, I had minor surgery on it yesterday and it seems to be fine (except that it’s on my left foot, aka “the good foot” and the Novocain wore off just as I left the podiatrist’s office). Now I can’t even play hopscotch.

Dr. Lin was pleased with my recovery to this point and kindly reiterated what it meant to be on the long road back. If things continue to go as well as they are now, I may be able to walk without a cane in 18-24 months. As an aside, I wish I had a photo to post on the blog of the face Marisol gave me. You see, I have had trouble coming to terms with how long that is and have been trying (unsuccessfully thus far) to find some way around that apparent ugly truth. Surely, there is some way to beat that! Marisol, on the other hand, has been of the mind that Dr. Lin isn’t trying to deceive me nor create some sort of sitcom-esque build up so that at my next checkup he can yell, “Surprise! You’re totally ready to get back to your life as you knew it!” Anyway, she gave me one of those, “See! I told you so” looks. I guess you could say I have a hard time accepting those numbers. But then again, the numbers have never been very good.

It has been 6 ½ months since I have walked. On the bright side, I’m getting quite adept at maneuvering a rather long body on a hopelessly ordinary-sized wheelchair. And I can’t tell you how nice it’s been no longer having Marisol bug me about taking a run with her. But it isn’t all bright side, as I’m sure you can imagine. Physical therapy continues, and the battle du jour is maintaining the strength I still have in my legs while also trying to build strength in the right leg, which continues to have movement and weight restrictions that must be adhered to. Thus, I’m doing a lot of isometric exercises so that when I’m given permission to start gait training (or learning how to walk again) I’ll have sufficient strength in my legs to do so. We’re also still working a lot on the right knee. It seized up when I was in the leg brace and I’ve lost quite a bit of my range of motion as a result. I continue to try to focus on the positive, on the progress I’ve made since April and on the fact that I’m still here, but quite honestly, recovery has been the hardest part for me. Perhaps naively, I didn’t expect that to be the case. Every day is a battle; it certainly has taken its toll on us.

I don’t know if Marisol would agree with me about recovery being the most difficult part yet, but I do know she is interminably busy and ready for bed by about 7 or so. She started teaching a yoga class on Sundays as well as doing a little non-profit consulting. I really think she has enjoyed getting out and getting back in to her professional life, even if only a little. Mostly, she stays occupied taking care of her boys and trying to take care of herself, too. Other than accidentally watching the first half of the film “Biutiful” (“How come no one told me this was a movie about a dad with terminal cancer?” she asked), she’s doing well.

Santos continues to grow, to amaze, and baffle the mind. He is 3 as of October 1st. Oddly, 3 seems a lot like 2 except that he’s bigger, louder, and has strong opinions about even more things. He continues to adjust to the demands on our lives pretty well, though he is really sensitive about my health. If I have a tough day, he seems to get worried that a hospitalization is looming. But overall, he is happy and healthy and I cherish the time we get to spend together. The bed and my recliner are constantly filled with toys (though I’ve outlawed crayons, Play-doh, and him drinking my protein shakes), and he does a wonderful job of including me in his life.

We are held together by your love and concern for us. Since we last updated the blog, too many of you to count have helped us out in small ways and big. All of it has mattered greatly to us. Thank you for your constant support over these past 10 ½ months. Oh, and don’t hold your breath for another blog entry anytime soon. (Just keeping it real)

My hope is that this letter will be an encouragement to the members of my family, and someday, my son.

Abuelita,

I have to admit, I think about you all the time.  Since your physical presence left us, I have had to go through my own journey to figure out how to live in this world without you.  You presence was the one thing I could always count on, always.  No matter where I was in the world, or what I was doing, I knew where you were.  It was certain that you would be at home, doing chores for the day, intermittently watching novellas, and inevitably you finish the day serving dinner in your kitchen.

I would tell you the same stories from my childhood, to which you would respond, Yo te crei (I raised you).  And on a very foundational level, this is true.  Most of my fondest childhood memories are with you.  Some of these include watching you water your garden and pick a handful of flowers, listening to you sing as you shuffled around the house, playing for hours outside and always being able to run inside to get a drink of red juice or a cookie out of your cookie jar.  Every morning before I went to school you would carefully do my hair by wrapping wet, long strands around your fingers until they fell into perfectly formed ringlets.  I would stand at the bottom of the stairs in front of your door and you would give me your bendicion before I made my way out into the world.

One of my favorite stories has to do with my Abuelo Saulo.  Because of a debilitating stroke that left abuelo disabled, you cared for his every need.  And he needed a lot of care.  I believe that I was about 4 or 5 years old and Abuelo collapsed, for some reason unknown to me.  You were calm, and while you held him, you told me to get on the phone and call 911.  My memory is that I called and told them what was happening.  Your memory is that I cried and sat in a corner and told you that I didn’t want to call.  Whatever the truth was, I did call and I felt brave.  But that isn’t what is etched into my memory.  It was your calmness.  I remember being transfixed on you and you were calm.

I don’t have as many fond memories of Abuelo Saulo.  You would probably say that it was because he was ill most of my life.  I think his presence and all of the stories you have told, have shaped my feelings and beliefs about him.  In my adolescence, I always wondered how you cared for him for so long and why you ever stayed married to him at all.  I asked you once, why you stayed, you paused and looked at me and said, Porque lo amaba. (Because I loved him.)  I believed you.  Not because of those words, but because of what you did all the days of my childhood.  You cared for his every need for at least the last 11 years of his life, and it isn’t until now, well into my thirties, that I understand what that means.

When we came back to Houston this time, both Jeff and I felt defeated.  I was tired, and I just wanted to stay home in Denver.  After hours of waiting in the ER, our friend Angela picked me up at midnight to get some food.  I shared with her my experience, and how it was hard to take care of Jeff’s every need at home.  In her deep wisdom, she said to me, “But what an example of love you are giving to Santos.”  She had no idea that this example was given to me long ago, by you.

I don’t understand why things happen, and I think if you could speak to me you would say, Crea en Dios.  I do understand that nothing is an accident, y que tu me creiste (you raised me) for a reason.  I am not sure that I have your stamina, but in my quiet moments I like to believe that I could do what you did.  Don’t get me wrong, I know that you were human and probably got tired or wished things were different.  I am certain this must be true.  The nice thing is that I was gifted with someone who deserves to be cared for and who I know would do the same for me.

I don’t think I ever said thank you for all the gifts you have given me.  I hope that you know that I was and am grateful.  Abuelita, gracias por tu ejemplo, me ha servido mucho. 

Most days I wish you were really, physically here.  But I have never doubted that you have been with me every step of the way.

Marisol

It has been a long summer. After another month in the hospital (split between St. Joe’s in Denver and M.D. Anderson in Houston), I am finally out and allowed to recover at “home”. Mari and I anxiously await the go-ahead to travel, which we anticipate we’ll get this Friday. Then it’s back home to rainy (really?) Denver. The hospitalization was difficult to say the least, and I am glad to be out and living in the apartment Mari and Santos have been occupying since our arrival in Houston nearly a month ago.

Each trip to Houston and each hospitalization has been getting more and more difficult for Santos. As his awareness grows seemingly each day, so too does his frustration with our present life circumstances. He has been a trooper–and he continues to be–but he also is beginning to express his feelings to us and he has a lot of anger. He told Marisol last night, “The medicine makes Papi tired.  The medicine makes me angry.”  I have been having more trouble managing pain this time, and as a result am on more powerful narcotics and higher doses of them. He is correct in pointing out that they don’t exactly help me to be much of a family man.

Despite his own process of my illness and recovery, Santi continues to offer many opportunities to engage him in play as he has not left my side since I was released on Wednesday. Wherever I go–which is really bed to couch, couch to chair, chair to bed–he is glued to me, waiting for me to settle in so he can hit me with a barrage of play. He brings toys, colors, puzzles, you name it, to my bedside and offers me two options–play or tantrum. As often as I can, I choose play. It has been really good to reconnect with him in ways that are meaningful to him and I think it helps to assuage some of his frustration. He seems to take renewed comfort in the knowledge that I am still his dad and there are still things we can do together. And to be honest, I think it helps assuage some of my own frustrations.

On top of the drugs, I am also a great deal weaker than when I left the hospital in late May. I was bedridden for nearly four weeks, not even allowed to get out of the bed to use the restroom. As a result, I am dealing with pretty severe muscle atrophy and stiffness in my joints. The gains I had made through physical therapy are gone. That’s been hard for me, too. I anticipated a long road to recovery, but not one this long or this difficult. It took me a while to reframe my mindset about the whole ordeal, to recover some positive thinking and momentum. I imagine most people in my condition entertain thoughts of giving up at some point in a long recovery, and I, no more superhuman than when this all began some eight months ago had to work through those feelings and fears. I continue to work toward being someone who chooses to put their all into recovery because of the joy that life brings rather than the fear of being a cripple, an invalid, an insert-negative-label-here. It is not easy, and there are no guarantees I will recover the way I would like to but remaining positive is a must for all three of us. The support we have received and continue to receive from all of you, as well as the constant support of Marisol and Santos has been a tremendous help in getting me back on track mentally and, as time rolls on, physically.

Other tangible sources of support for us have been my mother-in-law Blanca coming down from Chicago for the past week and Santos’ little buddy Jioh (and his parents). They invited Mari and Santos to the circus and a good time was had by all–even though Santos fell asleep until intermission. This outing has provided him with a great deal of storytelling fodder about lions and elephants and scary clowns. I also want to thank my boss Natalie Jenkins for arranging for my mother-in-law’s travel. This was a big help.

We had a positive appointment this morning with the thoracic folks about the blood clot surgery on my foot. They continue to be encouraged by my recovery from that procedure and don’t see any signs of long-term damage. The last hurdle for now is an appointment with Dr. Lin, the orthopedic surgeon, on Friday. We are hoping to hear I am well enough to travel and that I can get the staples out of my incisions. They have been one of the major sources of my pain.

If all is well, we will fly home on Sunday. Our next trip to Houston–barring any more unforeseen setbacks–is set for late October. That will be the six month mark for the hemi-pelvectomy. We look forward to good news and a smooth recovery from here on out. Thanks again for all your words of encouragement. They mean the world to us.

Jeff had the second procedure on Tuesday, July 5th.  The hope was that the surgeon would go back in and clean out the prosthetic and infected area.  This would increase the chances of saving the prosthesis and prevent further infection by placing antibiotic beads in Jeff’s leg.

We originally thought that the surgery would start at 12:30pm, but due to a cancellation, they were able to start the procedure earlier.  Our friend, Jordan Garcia, had come early that morning to help me with Santos.  His help freed me up to stay at the hospital during the procedure.  As has been true during the other surgeries, updates are provided every 2 hours.  By 12pm, they told me that Jeff was under anesthetic and they were more than likely on their way to opening the incision site.  At 2pm and 4pm, they told me that they were cleaning the prosthetic and Jeff’s vital signs were good.  They thought the procedure would be complete before 6pm.  I stayed in the waiting room, hoping to see Dr. Lin give me the final report.

While I was waiting, the friend I had met in the waiting room before, offered to come sit with me.  I hadn’t realized how much this would mean until it was offered.  We sat for a while and then she graciously offered to do some grocery shopping for me.  Again, this was so important since I don’t have a car and was running out of milk (critical in our household).

Dr. Lin came to the waiting room around 5pm to give me a final report.  He told me, as he usually does, that there was nothing “exciting to report.”  The procedure had gone well, Jeff had done well, they were able to clean the prosthetic and replace the head of his femur.  They had taken more samples from hard to reach areas of the prosthetic to see what Jeff’s bacterial counts were.  In reality, the area around Jeff’s prosthetic will never be bacteria free, but keeping the bacterial counts low will be critical.  After surgical procedures, patients usually stay in recovery for 2 hours before they are able to have visitors.  I went home with Amanda, unloaded groceries and readied Santos to go to the hospital to see Jeff.  In route to the hospital, I had missed a call from the recovery room.  After arriving to the hospital, I had missed a call from Dr. Lin.  I was able to call  Dr. Lin immediately.  He met me in the waiting room and told me that while Jeff was in recovery, he noticed that he could not move is foot, or his toes and the lower part of his leg began to grow cold.  They were unsure of what was happening since during the procedure, there had been no complications.  They were able to contact the Thoracic surgeons to come evaluate Jeff.  They were planning on taking him back into the operating room and see if they could figure out what was happening.  Jeff could have a damaged artery, a blood clot or swelling in Jeff’s leg was putting pressure on an artery and causing blockage.  It was clear that circulation was stopping.

I stayed with Jeff before surgery.  The fear we all had was that they would not be able to figure out the problem and they would have to amputate his foot.  Also, thrombosis (a blockage of the artery) is painful, and Jeff was in a lot of pain.  The morphine was not helping and no matter how hard Jeff tried, he could not make his foot move.  Before they transported him to the operating room, he was able to move his foot up.  This brought us some encouragement.  We both tried to focus on blood moving through his leg and staying positive.  Before any surgery, we usually look at pictures of Santos and try to focus on being together as a family.

Jordan, Santos and I sat in the waiting room.  After a few sensational meltdowns, mostly due to exhaustion, Santos fell asleep.  Jordan ran back and forth on a taxi to the apartment to bring food and blankets.  I tried to keep friends and family informed while we anxiously waited for any information.

A little over 2.5 hours later Dr. Huynh, the thoracic surgeon, came to the waiting room and told us that she was done and that they were able to find a clot in the artery near his pelvis.  The artery had received some blunt force trauma during the surgery.  Once they removed the clot and opened up the artery the blood started to flow to his foot.  We were relieved for good news.

I spent the night with Jeff in the ICU.  He was in pain and had a difficult time sleeping.  This is not uncommon in the ICU due to the constant stream of nurses and the loud machines.

Jeff was transferred back to his room in the late morning.  We were all tired and overwhelmed.  The surgeons assured us that the removal of the blood clot would not have any long-term effect on Jeff’s recovery.  Essentially it is repaired and will continue to function normally.

Jordan stayed with us until Friday morning.  We were all sad to see him go.  Santos and I have been making our way around Houston on the bus or the Metra train.  We have a settled into a rhythm.  We spend at least part of the day at the hospital with Jeff and the rest of the day in some air-conditioned area.

Jeff continues to work toward recovery.  He has lost a considerable amount of strength since he has been hospitalized for 3 weeks now.  He has been in bed for the majority of his hospitalization.  It has just been the past couple of days he has been able to get out of bed and take steps outside of his door.

We hope to be back in Denver on Sunday, July 24th.  Although the thought of ever returning to Houston used to bring me to tears, I am learning to accept that this where we are supposed to be right now and resistance if futile.

After our last stay in Houston, I said goodbye and was convinced that we would only be back in the fall for Jeff’s 6 month check up.  To be honest, I was okay with never coming back again.  When Jeff was in the operating room with the thoracic surgeon, I frantically sent updates to people I had been in touch with during the day.  I admitted to our friend Angela that I was “really nervous.”  She responded by saying something to the effect of “Whatever happens, it will be exactly what Jeff needed.”  She is right.  Whatever the outcome of this journey, it is exactly what was meant to be.

Here we go again

I know that it has been an incredibly long time since I have updated the blog.  I apologize for my inability to spend time writing and keep everyone informed of what is happening.  A large part was due to lack of time and another part was the challenge it became to write about what was happening.

As most of you know, after Jeff’s surgery, he spent 24 days in the hospital.  Part of that was recovery, the other part on the rehabilitation floor.  Once he was released, we stayed in an apartment near the hospital in order to make sure Jeff (and his surgeon) felt comfortable enough to go back to Denver.

We returned to Denver on May 27th.  Thankfully our amazing friends made some necessary accommodations for Jeff’s return such as railings for Jeff to get up the stairs and a ramp for Jeff to get in and out of the house.  (More on that later.)  We started to settle into our lives back home and Jeff began adjusting to his mobility restrictions.  Jeff had even started home-based
physical therapy.  We were hoping that all would continue to go smoothly until October when we would return to Houston for a check up and Jeff’s weight-bearing restriction on his right leg would be lifted.  (When Jeff moves around with his walker, he has to push his right leg forward without putting weight on it.)

Jeff started to get sick the week before Father’s Day.  This included nausea, some pain in his hip and overall discomfort.  We had hoped it would subside, but we realized that Jeff had and infection.  The infection made its way to his hip and settled in the form of a 10×10 centimeter abscess.  We admitted him to the hospital where they performed two minor procedures to
drain the abscess and he was given intravenous antibiotics.  Jeff stayed hospitalized in Denver for 8 days while we coordinated his care with his doctors at MD Anderson.  It became clear early on that we would have to return to Houston so that they could clean out Jeff’s prosthetic and continue antibiotics.  With the help of our family, we quickly made arrangements to return to Houston.

Jeff’s parents graciously agreed to stay with Santos in Denver until we were more certain about what this stay in Houston would entail.  They arrived on Friday and helped me with Santos in order to get ready for the trip and spend some more time with Jeff in the hospital.  We left late afternoon on Monday.  Jeff wasn’t able to return home because they wanted to continue his antibiotics until he left for Houston.  Our friend and guide through this process,  Angela Prior, picked us up from the airport in Houston and we drove straight to the ER.  We waited for about 2 hours before they saw Jeff.  About 3 hours into the waiting process, Angela came back to the  hospital and took me to get some food.  It was comforting to talk to her and glean from her wisdom.  Around 1am, Jeff was admitted to a room.  We settled in for the night, and after some time, I sleepily made my way to the Rotary House (It is the hotel connected to the hospital by a sky bridge.)

Jeff’s procedure was on Wednesday.  The purpose of cleaning out the prosthetic is to try to preserve it.  Once the hardware becomes infected, it must be removed.  In Jeff’s case, they would not replace it.  He would have to go on without a replacement.  His femur would eventually settle in to his soft tissue and he would have to walk with assistance.  He would also lose considerable length on his right left.

The surgery started at 9:08am.  The surgeon estimated that the surgery would be done by early evening.  I was surprised when they were done at 12:30pm.  Everything went as they had expected.  Jeff only lost 3 pints of blood due to leaking capillaries in the pelvic area.  Along with a thorough cleaning of the area, they placed small “pearls” of antibiotics in Jeff’s leg near the prosthetic.  This is to help clear the area of infection.  They decided to do the same procedure again this Tuesday to ensure that it is as clean as possible.  Rather than close Jeff’s incision, they stapled his leg to make it easier to get back to the prosthetic. They are estimating that Jeff will be in the hospital for a week and then stay locally for another week before we get the okay to go back to Denver.

Our friend Sue Lawson, who came on our first stay to Houston, is bringing Santos by plane tomorrow.  We will stay in the hotel for a couple of days until we move into a temporary apartment.  We will be enjoying our holiday weekend in Houston.

This was unexpected, and definitely a set back, but continue to keep looking at it as a bump in the long road of recovery.

Waiting Rooms and Santos’ Arrival

While waiting for an update in the Surgical waiting area, I met another woman waiting to see her husband in the recovery area.  We talked about types of cancer, diagnoses, and surgical procedures.  Her husband, Brian, was diagnosed with colo-rectal cancer, and has undergone radiation, chemotherapy and two surgical procedures.  Amanda and Brian live in Clear Lake, 45 minutes outside of Houston.  Since he would be spending a couple of days in the hospital with her husband, we decided to share information and keep each other company.

Amanda graciously agreed to take me to the airport to pick up Santos.  We decided it would be easier and more economical not to have a car this go around.  Sue and Santos waited at the airport for almost 6 hours for a standby flight.  They also encountered delays.  They happily arrived late in the evening and Sue slept in the airport to make a 6am flight the next morning. Jeff was excited to see Santos and grateful to have our little family reunited.

Santos and I moved into a one bedroom apartment this weekend and have settled in.  It is located in a building right next to the previous apartment complex we were in during our last stay.  The Metro train is only a mile away and they have a shuttle that runs throughout the day to and from the Medical Center.  Santos has been a trooper as we make our way back and forth to the hospital in the hot sun and humidity.

Since the procedure, Jeff has been in what he describes as “excruciating pain.” It is both the stapled incision and the constant back spasms that make the pain unbearable.  He is on a tremendous amount of pain medication.  Most days he is too groggy to be present, and tries his best to engage Santos for a short time.

Santos has been amazing.  He is happy and being extremely flexible.  He has been able to express his feelings well, and tell us what he needs.  I am in awe at his resilience.  I am drawing strength from him, since I feel like all my energy and reserves are depleted. Although it is a lot of work to have him here, it has brought us tremendous joy.

The Second Procedure

Today, Tuesday, July 5th, Jeff went in for his second surgery.  It was originally scheduled for 12:30pm but since they had a cancellation, they were able to start earlier.  He went in at about 10:30am.  He was nervous, but anxious to be done with these procedures.  We are hopeful that we this next recovery will be less painful and he will be well enough to come home in a week. Again, once he is released, we will spend a week here locally to make sure his recovery goes well.

At 12:30pm, Jeff was under anesthetic and the nurse thought they may have started to open the incision.  The next update will come in about 30 minutes.

Our friend (but really more like a family member), Jordan Garcia, came this morning. My cousin, Andres Carvajal, helped us get a ticket for him so that he could help me with Santos during the procedure and for the rest of the week.  It is stressful to be at the hospital all day, especially when you are anxiously awaiting for updates.

Now with help, I hope to pass along updates with more consistency.  I have written on several occasions, but the information becomes out-dated, and I start over.  It hasn’t been very efficient.  Thanks for your patience.

One foot in front of the other…

The Friday before we left, my friend and colleague, Beth Levin Kelley spent the day with me running errands with me and doing what she calls “loving me.”  We strategized the trip, ate good food and laughed.

Before I left, she gave me a new pair of hot pink shoes.  I promised to wear them every day, and I have.

Last summer, I ran a 6 day, 115 mile mountain race with my friend (and running partner) Christy Mougin.  It was the hardest race I had ever done for several reasons.  In reality, it probably wasn’t that physically challenging, but as most distance runners know, the biggest challenges are mental.  I struggled with wanting to keep going.  I cursed the race, the mountain trail, and even myself for signing up for the race. The only thing that kept me motivated was the vision of seeing Santos at the end of the race on the 6th day.  Every day that we finished was a day closer to the end.

This has been my longest journey thus far.  Most of the time, there are only false finishes with very little promise of a rest or true indication of a finish line.  Most days all I can do it put one foot in front of the other, completely uncertain of where we will end up.

I hope to wear these shoes until the end of the journey, and then I can retire them and they will be reminders of how we made it to the finish, in spite of all of our mental blocks and set backs.

PLEASE RSVP BY WEDNESDAY, MAY 11 IF YOU PLAN TO COME TO THE JEFF ERLACHER LUNCH AND RAFFLE CANCER BENEFIT!!!  JUST EMAIL JEFFCANCERBENEFIT@GMAIL.COM OR VISIT US ON FACEBOOK.
ALSO, WE ARE TRYING TO GET AS MANY PEOPLE TO COME AS POSSIBLE, SO PLEASE FORWARD THIS INVITATION TO ANYONE YOU KNOW WHO MAY BE INTERESTED IN ATTENDING.
If you have already RSVPed, thank you!
JEFF ERLACHER CANCER BENEFIT
SUNDAY, MAY 15 1-3PM
PATRICK CARROLL’S IN THE HIGHLANDS
3963 Tennyson St., Denver, CO 80212
Buy lunch and 15% of the proceeds will be donated to the Erlachers!
Bring cash to enter in the raffle/auction and win prizes (including gift certificates to local restaurants and shops, concert tickets, and electronics)!
Kids are welcome! Face painting and other activities!
Visit us on facebook!  Sign into your account and use the link:
http://www.facebook.com/event.php?eid=213701645308916#!/event.php?eid=213701645308916 
Can’t come but still want to donate?  Make checks payable to Erlacher Health Care Fund and mail to 3304 Perry Street, Denver, CO 80212.
Sarah Olivier and Paul DeMarte

Jeff continues to progress in his recovery.  Last week he took more steps out of his door and he has frequently used his wheelchair.  The Occupational and Physical therapists have told him that he is progressing quickly and doing better than other patients that have had the same procedure.

Dr. Lin, the surgeon who performed the procedure, explained that they had to remove a large portion of the femoral nerve.  The femoral nerve supplies the muscles that help straighten the leg. It provides feeling to the front of the thigh and part of the lower leg.  They are taking special care to make sure that Jeff will heal properly and be able to have flexion in his leg.

Jeff has been able to go outside in order to do some walking and to use his wheel chair.  He cannot bear weight on his right leg, so he is learning how to walk lightly and balance on his left leg.

Jeff was transferred to the rehabilitation unit on Tuesday.  He is continuing to progress quickly.  He has met some of his goals for discharge and is constantly trying to challenge himself in order to expedite his release from the hospital.  They are also working toward weaning him off the pain medication administered through his IV.  He is starting to take oral pain medication.

We are hopeful that he will be released by Wednesday of next week.  We will be staying in Houston until the end of the month so that Jeff can continue therapy and we can feel comfortable with our transition back to Denver.  There is a lot to be done in order to get the house ready for Jeff’s return.

Santos and I moved to an apartment near the hospital.  We needed to have a handicapped accessible space for Jeff when he is released.  Please let me know if you need our new address.

I hope to be more regular with updates.  With Santos, Jeff’s therapy schedule, and just the normal activities of life, sitting down at a computer is a challenge.

Update from Jeff

I was moved from the post-operative floor of the hospital last night about 9:00 PM or so. I am now residing on the rehabilitation floor where I get three hours of therapy each day. It is an extremely positive sign and I continue to progress quicker than anyone anticipated. That said, I hate cancer.

It turns out that having one’s right pelvis, hip bone and joint amputated is getting off with ease around these parts. One of the daily activities on this floor is upper and lower body strength training as a group each morning just before lunch. Having been bedridden for at least 23 hours of each day for over two weeks didn’t afford me much of an opportunity to meet any of my fellow pilgrims on this journey. I will now have a chance to interact with everyone else in this section of the floor on a daily basis.

I hate cancer because it takes. Most obviously, it takes lives, but it takes in so many other ways. I have met many brave and decent people since being here at MD Anderson, many who fight seemingly undaunted by the odds stacked against them–odds like or worse than the ones that came with the original erroneous diagnosis I was given. Sometimes dying is far easier that living, and I can’t begin to put words to what watching those who comport themselves with grace and dignity is like. There is a contingent of bitter ones too, and who can blame them? They are angels, each and every one of them.

I’ve met people who have lost their children to cancer, those who’ve lost their breasts or, like me, the ability to procreate; I met a man with half of a face. Cancer takes legs, arms, significant portions of one’s skull, one’s ears, throat and voice, sight, lungs, heart as well as every other organ or body part conceivable. To understand this place and this journey, one needs to come to grips with irreparable loss, often in the form of extreme physical dismemberment. It isn’t easy.

Today in rehab, I met a woman who has been dealing with breast cancer and later metastasis since she was three. That’s not a typographical error. I met the first guy in the US to have my same surgery today. He is not doing nearly as well as I am. Upon operating, the surgeons realized they were dealing with a rarer strain of chondrosarcoma and he will require chemotherapy for his entire bone structure once he is well enough to stand it. To make matters worse, his hip popped out of joint and he is due for surgery tomorrow in order to correct him again. The man I sat next to in the gym was an adept wheelchair driver. It turns out it is because he also had a hemipelvectomy several years ago once his thyroid cancer metastasized in his hip. Electing not to reconstruct, his femur made it’s way up into where a hip had once been and froze there, leaving his leg paralyzed. The cancer has since spread to his spine (which is now fused in significant areas), behind his now glassy right eye and it currently resides in his jaw. We took turns sharing the limited floorspace in the rehab gym so we could each finish our regimen of leg lifts with our functional legs.

These are my cohorts, my fellow travelers on this fraught road. Together we fight the urge to quit for a moment, or an hour, or a day–or for good. Their effort inspires me, just as I hope mine does them. They are moment-by-moment reminders of what was and was not my lot in life. They remind me that every day is icing on the cake, and I wanted to pay them the homage they deserve. They are angels, each and every one of them.

As an aside, I love the replies to the blog posts that the collective you keep sending our way. I have read them all–numerous times, in fact. In moments of anxiety or downtroddenness, they have lifted my spirits. We are so fortunate to live in an age in which distance doesn’t really matter all that much. Your love and kindness has helped bridge the gap between Denver and Houston. Thanks.