The morning that Jeff’s surgery was completed he was moved to the Intensive Care Unit.  The surgeon had told us at he expected that Jeff would be sedated for at least 24 hours.  When I arrived to the ICU he was still sedated and breathing with a respirator.  I was able to spend some time with him before I was asked to leave since visiting hours had not begun.  We were encouraged that Jeff had good skin color and remained stable.

Later in the day, Mary Lou spent time with Jeff while Crystal and I played with Santos.  When I returned to the ICU later that day, Jeff’s breathing tube had already been removed and he was in and out if consciousness.  He opened his eyes and seemed to recognize me.  During the mandatory visitor break, we were able to get dinner before Mary Lou returned to the ICU since I would be staying overnight.  Close to 10:00pm, she asked me to come to the ICU because Jeff was distressed and inconsolable.  After arriving, I quickly realized that it was a reaction to the anesthesia.  It took over an hour to get him calm and asleep.  Jeff would periodically wake up throughout the night, either in pain or confused.  At 4:00am, the nurse had to change several bandages and his sheets.  He had received more units of blood and there was blood on the sheets and his gown.  This required rolling him on both sides.  Jeff has a pelvic and leg brace to provide stability.  The incision was made up the side of his leg and around his lower back.  The act of rolling on his side proved to be extremely painful.  He was able to rest after and appeared to be comfortable when I was asked to leave at 7:00am.

The next day, Crystal and I went to Jeff’s room in the morning.  He had someone sitting with him because he had become distressed again.  It took a great deal of time to calm him.  Thankfully, it was the last time he had this type of challenging episode.  The nurse and I continued to try to encourage him by explaining the procedure and how quickly he was recovering.  She also showed Jeff an x-ray of his new pelvis and hip.  It is stunning.

I was able to spend most of the day with him and he was slowly returning to normal.  That day, we left the Rotary House and made our way back to the Priors.

Jeff was released from the ICU that evening and is now on a regular floor.  He continues to progress, in many ways, much faster than we had imagined.  His first “tasks” in his recovery process were to manage his pain, roll to his side and sit up on the side of his bed.  He has completed them all.  On Saturday, he worked with a Physical Therapist and was able to get out of bed and walk with a walker.  He cannot bear weight on his right leg, but hopped several steps out of his door and back to his bed.  This is a huge accomplishment.  They will continue to work at getting him out of bed regularly and increasing his mobility.  We continue to face some daily challenges, but are deeply encouraged by Jeff’s resilience and progress.

***A message from Jeff

Thank you to each and every one of you who has been praying and thinking of me and our family as we go through this latest trial. I am happy to report that as of Wednesday morning I am cancer free. It’s an amazing feeling to have a second chance at life, and this time I promise to be good. Today is by far the best day I’ve had yet. While I’m still pretty groggy and sedated on some wonderful narcotics, I am finally coming into myself and I can even hold down fluids. I can’t begin to describe my gratitude. I feel blessed beyond belief.

I still face a long road to recovery–at least months in a wheelchair and six months before I can bear significant weight on my right leg. And if the last five days are any indication, full recovery going to be harder than it sounds. But I learned to walk once in my life, so I imagine I have a pretty good shot at doing it again.

On a lighter note, anesthesia makes me think I’m 80s TV characters. Apparently, as I came out of sedation, I kept singing the lyrics to “The Facts of Life” (You take the good, you take the bad, you take them both and there you have the facts of life) as well as one line from the theme to “Cheers” (Wouldn’t you like to get away?). Oh, and I thought I was Cliff Claven and an Iowa Hawkeyes football player. Marisol has yet to find the humor in it all since it was more like psychotic ramblings than, say, joyous singing of beloved Americana. They tell me most of the damage is permanent.

The medical staff is heartened by my speedy recovery, and while it is mentally straining to have my legs immobilized and to be completely dependent on others for just about everything, I, too, am heartened by my recovery. Thanks again for all your support. I truly believe that it has made all the difference.

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After a restless night, Jeff admitted himself into the hospital at 5:40am.  Our friend, Crystal Middlestadt arrived yesterday to be with me us and support me today.  Dave and Mary Lou, Jeff’s parents, are here as well.  I was able to spend time with Jeff before they carted him off to the Operating Room.  Jeff was extremely calm.  In typically manner, Jeff joked with the staff and politely remembered everyone’s name.  We hope to get our first update in about 2 hours.  First, they will remove the tumor which will take the majority of the day.  We will continue to update everyone throughout the day and into the night.

***11:30 AM

At 10:00am we received our first update from the nurse.  At 9:27am they started the surgery and Jeff’s vital signs were looking good.  We will get another update at noon.  By then we hope to get more information.  At some point, the surgeon will step out and meet with us.

***3:20 PM

So far the news has been the same: “The surgery is going well and his vital signs are good.”  When we want to get an update, we sit in a waiting room until our name is called.  They then usher us into a smaller room where two nurses look through a long list and read off the update.  It typically takes 2 minutes, and then we wait 2 hours for the next update.  We are glad that Jeff’s vital signs continue to be normal.  We wait for the tumor to be extracted.

*** 7:15 PM

Crystal and I went to the 4pm update.  The nurse told us that Jeff continued to have stable vital signs and they continued to work on getting ready to extract the tumor.  Because the pelvis is the core of the body and so vital nerves, arteries, and organs run through it, it takes an painstakingly long time to prepare the are for the tumor extraction.  The procedure causes a tremendous amount of bleeding, so Jeff will have a transfusion at some point.  They told us that he had not started to bleed excessively yet.

Dave and I went to the 6pm update.  Jeff continues to be stable and they finished preparing the pelvic area for extraction.  As we knew, she reiterated that it would be a long night for us.  In some ways the day has gone by more quickly than we had expected, but as day comes to an end we begin to tire and feel the emotional toll the day has brought.  We continue to preserve, encouraged by Jeff’s strength and endurance.

***1 AM

When we arrived at the waiting area for the 10pm update we were one the last families left.  This was a sharp contrast from the bustling waiting area we and encountered just 2 hours before.  We were told by the nurse that they were working on removing the tumor/pelvis.  Jeff had started receiving transfusions due to excessive bleeding.  They expected the surgery to be complete by 5:00am.  Since the waiting room would be empty, and most of the staff gone for the day, Crystal and I decided to set up camp and wait for a phone call from a nurse at midnight.

Crystal and I tried our best to rest on the hard hospital recliners and wait for the next update.  At midnight, the phone did not ring.  After 20 minutes of waiting, we tried calling different people to find someone who could tell us what was happening.  We finally found an employee who lead me to the operating rooms where he summoned a nurse.  She assured us that someone would call us in 10 minutes.  We did finally get a call from one of the nurses assisting in the surgery who told us that the “specimen” or pelvis had been removed and they were working on reconstruction.  We are relieved to hear this.  He was gracious enough to agree to call me on my phone so we could go to the room and rest.  He was hopeful that they might be done by 4:00am.  After some coercion, he agreed to call me in 2 hours with and update.  We are now leaving the waiting room to get some rest.

***Last Update

After a long trek back to the hotel room, forgetting my phone and having to return the waiting room and a room key that didn’t work, we were finally able to get some rest before I received a call at 2am.  They reported that Jeff was stable and they were in the middle of reconstruction.

At 4:30am, the surgeon called and told us that the surgery was sucessfully completed and there were no complications to report.  They were able to perserve major organs, and the femeral nerve and siatic nerve.  He stated that the prosthetic fit very well and Jeff was stable throughout the surgery.  Jeff received 12 pints of blood, which apparently is not very much considering the extent of the surgery.  Jeff is now resting in the ICU.

We apologize for the delay in providing an update.  We returned to Denver and were happily overwhelmed by being in our house again and seeing all the people we love.  We gave ourselves a week to get settled and try to put our lives back in order before sending Santos back to school and starting back to work.

Jeff still struggled with nausea, fatigue and a lack of appetite. Our plan was to come home and get well in order to deal with the next phase of our journey.  It became clear that it would become more challenging than we had anticipated.

I tried to go back to work and start to return to some state of normalcy. It again became clear that life would not be normal again.  It has been difficult to find the emotional space necessary to be present with clients and not to be distracted by what is happening in our lives.  I did my best to attend to clients and do what I needed to do to keep things going.

We are shocked that our time back in Denver is coming to an end and we will be returning to Houston.

*Internal Hemi-Pelvectomy Type 2/3 with Endo-prosthetic Reconstruction and Total Hip Arthroplasty *

As most of you know, during our time in Houston, Jeff was re-diagnosed with a Grade 2 Chondrosarcoma.  The “grading” or “staging” of Chondrosarcoma is different than Melanoma.  Grade 2 means the tumor is in an intermediate stage and there is a higher degree of pain.  It also requires a larger resection of bone.  This is why they have recommended an internal Hemi-Pelvectomy.  This means that the right side of Jeff’s pelvis will be removed.  When the pelvis is removed, you lose the hip socket, thus requiring a total hip replacement in addition to the pelvis.  We have opted for a metal or titanium endo-prosthetic.  They have not used these types of prosthesis before, so we are taking a risk since there is no data that can be provided about the efficacy or infection rate.  We are just going with theory and hope that it will give Jeff the mobility he desires.

The surgery itself can take 16 hours–or longer.  After surgery, Jeff will be hospitalized for at least a month.  This includes recovery and physical therapy so that he can begin to “re-learn” how to walk again.  We plan on staying in Houston for
two weeks after Jeff is released in order to stay close to the hospital to ensure that Jeff feels that he has progressed enough in his recovery to return to Denver.

Our friend, Jose Quintana, has agreed to come to Houston and transport Jeff back to Denver.  We are unsure of what that will look like, but it will either involve a van or RV.  We will let you know as the time draws near.

*Fundraisers and Supporters*

*Jammin’ for Jeff*

Our friends Jordan Garcia and Rachel Chaparro organized a fundraiser called Jammin’ for Jeff on March 25th at a night club called La Rhumba.  Jeff and I were able to attend and spend time with friends and supporters.  Not only were we grateful for the financial support that was given, but our spirits were renewed by the people who took the time to come. Overall, our friends raised over $1000 for Jeff’s treatment!

*Beat the Beast*

One of our dearest friends, Raquel Najera, ran 6 hour race in Moab, UT on March 26th.  (This was after attending our fundraiser the night before!) She and some friends and co-workers formed a team called “Beat the Beast.” They ran the race in honor of Jeff.  The race covered a 5.4 mile loop that the team ran for 6 hours over night.  Raquel completed 26.75 miles and placed 3rd.  Yes, we have amazing friends.

*Cornerstone Church*

During the month of February, a special benevolence offering was taken at Cornerstone Church in Marion, IA (near Jeff’s hometown of Cedar Rapids) and the proceeds, approximately $5,800, were designated to our families financial needs Jeff’s parents and brother Brad attend Cornerstone Church.  We are truly grateful to all the member of this church community and their generosity.

*New York City*

In order to ensure that we are on the right path in terms of treatment, we decided to seek out a second opinion at Memorial Sloan Kettering Cancer Center in New York City.  The appointment itself required a great deal of coordination but came together at the last minute.  We had to make sure that all of Jeff’s medical records, scans, MRIs, x-rays and biopsy slides were sent a week before the appointment was scheduled.  As you can imagine, none of this comes easy and requires an infinite number of phone calls and emails.

We arrived on a Tuesday in order to help Santos adjust to the time change and settle in before our appointment on Thursday.  We were able to stay with another dear friend, Avy Skolnik, who is currently a PhD candidate at Columbia University.  Santos immediately fell in love with the city.  Riding in taxis and chasing pigeons on the street quickly became his favorite things.

We were unbelievably grateful to our friends and one of our favorite families, the Vastolas, for helping us with Santos the day of our appointment.  Fortuitously, they were visiting family in New York from Denver at the same time we were having our appointment. Andrew, Robin and Berlin (Santos’ best friend) took Santos to the Museum of Natural History to see “scary dinosaurs” while Jeff and I waited.  I am not sure I have ever articulated this in previous posts, but it is common for these types of consultations to wait for up to 2 hours.  So the appointment you would imagine would take no longer than an hour, usually ends up taking most of the day.  I foolishly thought we would finish up and meet the Vastolas and Santos for time at the museum and a nice lunch.  I was wrong.  We met with Dr. Samuel Singer, a surgical oncologist who specializes in the diagnosis and treatment of soft tissue sarcoma.  Dr. Singer recommended the same procedure, and internal hemi-pelvectomy, as they had at MD Anderson.  We asked to meet with an orthopedic surgeon to get more information.  They were able to get us and appointment with Dr. Patrick Boland.  When we checked in for our appointment at the main hospital building, we were told that Dr. Boland typically runs 2 to 3 hours behind and since they were trying to slide us in, we would be waiting for awhile.  They encouraged us to go to lunch and they would call us when they were ready to see us.

We met the Vastolas along with two sleeping toddlers at a small bistro near the hospital and were able to eat lunch while we anxiously awaited a call. Jeff met with Dr. Boland who spent over an hour with him which involved showing him x-rays and explaining what the procedure would entail.  He also showed us an x-ray of another hemi-pelvectomy he had performed.  It is one thing to visualize what it looks like for half of Jeff’s pelvis to be removed, but it is another thing to actually see it.  For me, it was a bit unsettling.  Dr. Boland assured us that it would not make a significant difference to have the procedure at MD Anderson or Sloan Kettering.  So, we move ahead with the surgery, scheduled for April 19th at MD Anderson.

*Shutting My Doors, Jeff’s Future*

After much consideration and consultation with my colleagues, I have decided to temporarily close my private practice.  It became clear that it would not be manageable with the uncertainty or our future.  It is also challenging for my clients, as considerate as they have been, to have a therapist that has a schedule that is constantly in flux.  It was a difficult decision, but the right one, and will allow me to stay focused on caring for Jeff (and Santos) through his period.  I have no doubt that I can come back a rebuild a practice with more focus and clarity once our family is settled.

Jeff’s work has been tremendous throughout, providing him with his full salary until he can come back. His coworkers have given financially to us, sent care packages, and even promised a birthday pie upon return (his birthday was March 16). It is difficult for Jeff to be away, but he certainly does not feel forgotten.

*Preparing for our Return*

Post surgery, we believe the progression of Jeff’s recovery will look something like: wheelchair, walker, cane, walking unassisted.  This can take up to two years, and can vary with each patient.  We are trying to prepare for return to Denver. Our friends, Christy Mougin and Jim Haugen and Christy’s parents, Clarence and Dorothy Mougin constructed a wheelchair ramp in our backyard.  The ramp starts in the garage and goes directly to our back door. They worked so hard and diligently to make sure it was secure and stable for a wheelchair. Again, it is true, we have amazing friends.

There are several other details that we need to consider before we return to Denver, we hope, with the support of others, to get them worked out in order to ensure a smooth transition home.

This is a lot. And we’ve been through a lot, but we remain confident that the surgery and long road to recovery will be positive. Our spirits remain high and we find peace most days. Thanks to all of you for your support.

P.S. I will provide updates to the blog on the surgery as I get them. We met with the surgeon, Dr. Patrick Lin, today and he assured us that the surgery will likely go well into the night. Stay tuned for the update.

After meeting with the orthopedic surgeon on Monday, we became anxious at the prospect of going home to Denver.  Jeff had several appointments scheduled including a bone scan, another ct scan and acupuncture.

We found out on Tuesday that all off Jeff’s appointments would be done on Thursday and we would be free to go back to Denver.  If we decide to proceed with surgery at MD Anderson, we will have to wait 6 to 8 weeks for the metal endo-prosthesis to be made and for surgery to be scheduled.  This will be the first time they have done hip reconstruction with a metal endo-prosthesis.  It has been done successfully with cadaver allografts, but again, the risk is great.  In theory, a metal prosthesis should have a lower risk of infection, but that is yet to be seen.

Friends of ours, Lisa and Anthony Gallegos, graciously offered to help us get our car back to Denver.  Anthony flew into Houston on Friday morning, we met him at the airport and he headed back to Denver.  We are so grateful for their generosity.  Without their help, we wouldn’t have been able to come home so quickly.  It amazes me how people with whom you have very little contact are willing to come through for you in big ways.

My sister, Tanya Perez (pictured above), was able to come to help us for a week.  Our uncle, and her boss, Luis Solarte, gave her the time off of work and bought her ticket for her to come to Houston.  Since Jeff was not hospitalized for bio-chemotherapy, she was able to help me with Santos, take Jeff to numerous appointments and cooked several meals.  Santos enjoyed playing with her and yelling “Tia Tyna” when he wanted her attention.  She was an enormous help when we needed to pack up for the trip back to Denver.  Without her, I am not sure I could have done it alone.  Jeff and I have been so happy that Santos has been able to spend time with his extended family including Nana and Tia Tyna.

My cousins, Kurt Solarte and Andres Carvajal, also helped to make our return to Denver happen.  They were able to get us tickets with their accumulated frequent flier miles.  They made sure that Jeff would fly home in first class to ensure more leg room and comfort.  Needless to say, Jeff was happy.

We were sad to leave the people we had come to know and love, including Luz Mary and Sobeida.  Both help Angela and Nigel with the care of their daughter Lauren and daily tasks.  They have been warm, loving and have treated us like family.  Because of Luz Mary, we ate more Colombian food than we have in the past year.  Our favorites were empandas and cheesy arepas.  Perfect comfort food.  They also won Santos over and spent time loving on him and playing with him.  Santos spent many nights, “doing homework” with Sobeida and Lauren.  (For Santos, this meant coloring or painting).

Santos’ last day of school was memorable.  Not only was it Cowboy day, but Santos’ teachers Ms. Nikki and Ms. Zvia, waited until the end of the day to celebrate Shabbat.  She allowed Santos to hold the cup and put his hand on the Challah bread during the prayer.  We brought kosher cupcakes, which made for happy kids and multi-colored faces.  His teachers have been amazing to us.  I have told them repeatedly that I want to transplant to the school to Denver.

We left for Denver on Saturday morning.  On our way to the airport, Santos complained that his “tummy hurt.”  Sadly, we did not heed his warning and he projectile vomited all over himself and the car, four times.  We had to pull over and try to put him and car back together.  We barely made our flight.  We arrived in Denver, to our friends and our home, filled with gifts, flowers and delicious food.  (The gifts, flowers and food were given to us by Lindsey Myers, Shannon and Jamie Breitzman, and Bonnie Moya and familia.)  We were overwhelmed with joy to be back, and to have a respite.

Our plan is to rest, readjust to life again and plan for the next stage of the journey.  It is impossible to express with words how grateful we are to everyone who supported us during our time in Houston.  We will continue to keep you up on the goings-on of our lives as things progress toward surgery.

Jeff wrote this entry shortly after his bio-chemotherapy treatment.  Because everything become unclear, it took us awhile to post it.  Please take time to read it.

I found myself repeating these words once I started to awaken from the haze of the chemotherapy and its attendant fallout of side-effect controlling drugs the other day. At first I couldn’t even hear myself speaking them. Then I was able to muster up the strength for a whisper yell to the ceiling and beyond: I am still here. I AM STILL HERE.

Indeed, we are still here and are gearing up for the next chapter, the next round in this fight. I wanted to take a moment now that I have most of my faculties about me again, particularly the ability to entertain cohesive thought, to write all of you and especially to thank you for your support. We are still here because of all of you. I can’t find adequate words to express the depth nor the breadth of my sincere gratitude for all that you have done for us in the little time we have been in this fight. It has brought me immense joy to hear from colleagues both current and former, friends and family from all stages of my life, former professors and elders of my youth. And now for some (hopefully) comprehensible musings.

This time has afforded me a great deal of space to think, which can be a really great or terrible thing. The real battle, it seems to dawn on me more and more daily, is not of a physical nature. Rather, it is for our hearts and minds. Do we allow bitterness, resentment, and anger to override us and choke out our lives? This is, after all, our lives. This is not something that has somehow derailed us from our path. This is our path, and we can choose to live it in the moment or be destroyed by it. Thus far, and not without the support and love from all of you, we are living—even thriving.

I can honestly say that (most of the time) I am more content than I have ever been at any point in my life. Cancer has given me the gift of lucidity. And why not? Does anything ever only take and give nothing in return? Is something only ever completely good or completely evil? Don’t we feel just a tinge of sorrow in even the best moments because we know that they cannot be sustained? And conversely, don’t we also have the opportunity to feel hope even in the midst of the most dire of circumstances, because these circumstances too, cannot go on interminably.

Early on in our cancer journey, I went to an herbalist and homeopath—a cancer survivor herself—who encouraged me to make friends with the cancer. In that moment I wanted to beat the tar out of her. Who the hell are you to tell me to make nice with this thing growing inside of me that threatens to take my wife, my child, my entire life away from me I wanted to say. I’m glad on many levels I didn’t assault her. I don’t think that cancer and I are friends yet, but we are learning to coexist, which I suppose is the reality anyway.

In these words, I don’t intend to discount the physicality of what I’m enduring—or what Marisol is enduring. I don’t want to set up a false dichotomy that it is somehow an either/or situation nor do I intend to perpetuate a falsehood that this is in essence a mind over matter kind of thing. It most certainly isn’t, and I would be worried about severe damage to my short-term memory if I did espouse this idea. Chemotherapy is—by far—the most grueling physical test I’ve ever undergone. It is like being 15 hours from sunrise with a host of filthy blackbirds in your mouth, as was the case is a lucid dream I had while imbibing the drugs. It is beyond one’s will to address it head-to-head. It simply is—and I must simply endure. But while this illness creates literally dozens of physical mini crises, (can I get out of bed in time to make it to the restroom?) it creates as many emotional and cognitive crises. And in crisis there is opportunity.

We are presented with the rare opportunity to see what we’re made of, even under the most stressful conditions. And I have to say that I am amazed with he selves that have emerged. I always knew Marisol was strong, but my God how strong she is! And even Santos at such a young age exudes a quiet strength that tells me he will be alright—an incredible source of comfort for me as his father.

We have been given the opportunity to live out our vows to one another as life partners and parents. How would you love if you didn’t know how long you had to love? I’m finding this great gift of reckless love, not to hold back until tomorrow what you can do and say and feel today.

We have been given the opportunity to receive. Marisol and I are much more comfortable as givers than we are as receivers. But at present we have so little to give. It has always been difficult for us to feel in need and to have others supply those needs, whether the nature of the need is physical, emotional, or even spiritual. But the reckless love we have received from all of you for us on a daily basis has overwhelmed our senses and sensibilities. I am encouraged beyond measure by the thoughts, prayers and tangible gifts that have been given to us. I have never, not for one second of one day, felt alone. Thank you from the depths of my heart for this gift.

One of my favorite writers and people is Rabbi Abraham Heschel. I am particularly fond of this quote: “Just to be is a blessing; just to live is holy.” I am still here and I am not alone. Thank you.

 

 

I apologize for the delay in providing everyone with an update.  With Jeff’s release from hospital, Mary Lou’s departure, visiting friends, a sick toddler and trying to navigate some significant changes, we have been unable to sit down and write.

Misdiagnosis and a Change in Treatment

Yes.  You read this correctly, last week it was confirmed that Jeff was misdiagnosed with melanoma.  This part of our journey began during Jeff’s hospitalization.  As we were trying to figure out what Jeff’s BRAF status was, Jeff had a biopsy the Thursday before he was released.  The following Tuesday when Jeff was released from the hospital, we received a call from one of the Physician’s Assistant (PA) from the Melanoma Clinic.  She reported that the pathologists were confused about Jeff’s biopsy sample because the initial tests were showing that the tumor was a sarcoma and NOT a melanoma.  In order to make a decision, the doctors from melanoma, sarcoma and the pathologists were going to meet and review all of Jeff’s labs and scans to try and figure out why this had happened.  She assured me that the bio-chemotherapy was not in vain because sarcomas can be very responsive to chemotherapy, and it may have produced results.  We would just have to wait for the scans in order to make a decision about continued treatment.

Initially, we were shocked and confused as to how this could happen.  Before coming to Houston for treatment, we had Jeff’s biopsy samples sent to Houston for testing and confirmation of the diagnosis.  They confirmed Jeff’s diagnosis, but did not have enough tissue to test for the BRAF mutation.  I immediately called our oncologist in Denver and asked him to explain.  He reassured me that this was common and melanoma and sarcoma could be confused in diagnosis.  He also reassured me that MD Anderson was the best place to be for sarcoma treatment.  After spending some time trying to process this news, we decided that we would continue on as though Jeff’s initial diagnosis was true and wait for the outcome of the meeting on further testing.  We felt hopeful that it could be a sarcoma since from the little reading we had done, sarcoma is more responsive to chemotherapy treatment.  But again, we were careful not to focus too much on this.

On Monday, Jeff had a horrible CT Scan experience that started and 6:30pm and ended at 10pm.  We were both exhausted since the previous day both Jeff and Santos had a fever and cold.  We had to monitor Jeff’s temperature as it had spiked to 101 degrees.  Post chemotherapy, once a patient’s temperature reaches 101.0, they have to go to the ER to be monitored for an infection.  I, out of a bit of paranoia, monitored his temperature for hours.  It dropped down to 99.0 quickly and stabilized for the rest of the evening.  Santos on the other hand, remained cranky and sick for the most of the day and night.

On Tuesday, we received a call from another PA from the Melanoma Clinic (the PAs here are what we call the “human” side of the MDs) and she said that the doctors could not make a decision about the diagnosis, and they wanted to do another biopsy (What they termed a “super biopsy.”) in order to take multiple samples from different parts of the tumor.  They also scheduled an MRI of the pelvis.  Jeff spent the rest of the day in the hospital.  Wednesday we received a call from the PA with some initial results from the previous day’s testing.  The radiologist who performed the MRI had reported that the way the tumor was “lighting” up was consistent with a sarcoma and without the final report from the pathologists, the doctors were leaning toward a sarcoma diagnosis.  We would be meeting with our oncologist in the melanoma on Thursday to discuss our treatment options but they had also scheduled an appointment with an orthopedic surgeon in the sarcoma clinic for Monday.  They hoped that we would receive the final report from pathologists on Thursday.

During our meeting with our oncologist, we found out more about the misdiagnosis.  Here is what the doctor concluded: (I am taking this directly from his report in order to provide everyone with accurate information.)

“Although the first biopsy from the outside hospital with a fine-needle aspiration revealed pleomorphic cells with a strong S100 positive expression along with a focal but strong melan-A expression.  However, the core needle biopsy from 2//03/2011 did not show any foci suspicious for metastatic melanoma.  Melan-A expression was negative.”

“Therefore there are several theories that exist at this time.  One possibility is that he has differentiated chondrosarcoma with some differentiation of melanocytic features.  Another possibility is the metastatic melanoma with a cartilaginous involvement which is quite rare as well.  The third possibility is that the fine-needle aspiration from the outside hospital does not belong to Mr. Erlacher.”

So there it is.  We are still trying to make sense of all of this.

Surgery and a Reconstruction

We met with the Orthopedic Surgeon in the Sarcoma Unit yesterday.  He told us that Jeff has been re-diagnosed with Grade 2 Chondrosarcoma.  Chondrosarcoma is a sarcoma, or malignant tumor of connective tissue. It is the second most common primary bone cancer where cells begin growing within or on the bone.  There are no treatments that are known to shrink Chondrosarcoma tumors; the only treatment option is surgical removal of the tumor and any infected tissue or bone.

The tumor is pushing up against Jeff’s organs, but not invading them. The scans also show that the cancer has not metastasized in Jeff’s lungs or organs, which can happen with Chondrosarcoma.  Since the tumor is in the bone, they will have to remove Jeff’s hip.  This is a major surgery that will require hours in the Operating Room and a month long hospitalization.  They are able to do reconstruction with either a cadaver bone (known as a cadaver allograft) or with a metal prosthetic that will be custom made for Jeff.  The cadaver allograft is extremely risky and has a high rate of infection, almost 33 percent.  The metal replacement is a new procedure, and there is not very much data yet.  There is only the theoretical assumption that the metal replacement will decrease the possibility of infection.  If the tumor gets bigger and more complicated to remove, amputation of the leg would be the next step.

After the procedure, they have told Jeff that it can take up to 2 years to be able to walk with a cane and he will not be able to run again.  After surgery, there is a 1 in 4 chance that he could have a recurrence of the cancer.

Although we are happy about the increased prospect of Jeff living, there are new challenges and new losses to grieve.  We are navigating a complicated web of feelings.

We hope to return to Denver in order to get Jeff healthy enough for the possibility of surgery and be in our home, surrounded by people we love.

Friends here, Friends from Home

The weekend after Jeff was released from the hospital, we were blessed to have visitors.  Suzanne Berg Lieuwen, one of our dearest friends and first friends in Denver, came to spend time with us.  She and her husband Dave coordinated the care of her 3 kids in order to help us.  She helped with Santos, shopping and cooking but just her presence alone gave us comfort from home.  She also brought chocolate covered pretzels and homemade granola for Santos, a big hit.

Our friend from college, Ryan Perkins, also made a day long trek from Portland to spend time with us.  He also left his two kids, Elijah and Sitara, in order to see us.  Elijah is constantly praying for Jeff and in a phone conversation asked Jeff if his tumor was “getting smaller.”  He is truly a sweet spirit.

While Suzanne and Ryan were with us, another friend from our college time, Rob Mezger, came with his wife Janet and their son Mack to visit us.  Rob came armed with a picture of Jeff wearing what looks like a tank top with a Venezuelan flag on it and copy of The Catcher in the Rye in his pants.  (Why in his pants?  I don’t know.  If he had left a copy, I would share it.)

Over the weekend,  Jeff felt the best he had since he had been released.  It raised my spirits to see him up, laughing and engaging.

We have also had the opportunity to spend time with a family from Santos’ classroom.  Eloosha (Elijah) is another active little guy from Santos’ class.  His mother, Miriam, has been kind enough to ask us out for play dates.  We were able to spend time with them along with her husband Daniel.  Miriam is a bankruptcy lawyer.  In our situation, probably really good friend to have right now.  We are glad to have more people in Houston so we won’t feel as lonely when we return.

Now we prepare to head home, grateful for all that we have learned and experienced here and ready for the next stage of this journey.  As I said, we are still navigating a complicated web of feelings.  We will take the next couple of weeks to do everything we can in order to make the best decisions for our family.  For those of you in Denver, we are ecstatic to see you all.  For those of you spread out across the country, we always hold you in our hearts.

Jeff was released from the hospital yesterday after 11 days.  Since Jeff was able to eat some, they felt comfortable sending him home.  Although Jeff was grateful to be leaving, he felt overwhelmed by what the next week would entail.  Mainly, how he would be able to recover at home and how Santos would respond to his inability to be active.  His fears were alleviated when Santos quickly snuggled into bed and read a book with him.  He seemed to understand that Papi was still sick.  He constantly points at Jeff’s catheter and says, “Papi has an ouch.  Papi is sick.”

Our job now is to allow Jeff to rest, gain back energy and gain weight for the next course of treatment, whatever that may be.  He continues to feel nauseous and has a difficult time finding the energy to get out of bed.  We celebrated the victory that he was able to eat almost a full piece of toast and a few bites of rice.  He spent most of the day in bed but was able to take a shower and spend a few moments watching Santos play.  Mary Lou and I busied ourselves getting things organized to help Santos feel more at home here at the Priors.

When I mentioned to people that Jeff was coming home from the hospital, some would say, “You are going back to Denver?”  I found myself correcting myself and saying, “No, he is leaving the hospital but we are not going home.”  We have found wonderful people and great support here in Houston, but we desperately miss home.

We are constantly moved by the outpouring of support we continue to receive from friends, family and even people unknown to us.  Please know that all of your gifts, financial donations, cards, flowers and encouraging messages are received with tremendous gratitude.  In a journal that I am keeping for Santos, I wrote my first entry the day after Christmas, 9 days after Jeff’s diagnosis.  At the end of this entry it reads, “Your life was created out of love and the hope that you would be wiser, love better and be a greater change agent in the world.”  Our hope is the record of all this will be a testament of how an amazing community comprised of loving people sustained us in order for our family to stay together.