Cancer Surgery and the MD Anderson experience

Tonight I am at our hotel room as I have a night off while my brother Jim is staying with Brandon.  I learned a long time ago that if Brandon is in the hospital it is better to have time off for everyone involved.  It gets overwhelming, tiring, emotionally draining and it always includes sleep deprivation.  This hospital stay has not been any different.  But I am always amazed at how well Brandon does even under the most difficult of circumstances.  He is very strong and determined to get better.

Before we went to Houston Brandon's friend Roger and his family put together a fabulous book for him and me on pain.  Roger made these great signs for him to use to let us know about pain.  He has used them.  I want to thank them for the valuable information and the fabulous and thoughtful Beatle signs.  All was great.

This week began with the drive to Houston and checking into our hotel close to the hospital. Knowing that Brandon may not be able to eat solid food for awhile letting Brandon to eat the food he loves has been our goal prior to surgery.  I told him all weekend that whatever he wanted to eat and however much he wanted to eat was up to him.  He went with me to the grocery store and he picked everything he loved.  He ate all weekend. When we arrived in Houston I found a restaurant that only served mac and cheese and we went there for dinner.  He was in mac and cheese heaven.

Brandon had to be at the hospital for surgery at 6:30 am.  I was a little amazed at how the process worked.  We checked in, we waited, they called Brandon's number with others and they have an assigned room for him to prep for surgery.  It was a little weird.  But when we arrived at his assigned room, Dr Ross's interns were there waiting for him.  They asked questions, the nurses participating in the surgery met with us, the anesthesiologist met with us (oh and she was form England - a plus), both teams met with us.  When they felt confident with the answers Brandon happily agreed to go back with them.  It was an agonizing waiting game.  Every two hours we received updates from the nurses in the surgery areas and we were waiting along with at least 30 others to hear the results.  Finally they called for us to meet Brandon in recovery around 2:30.  We were there as he woke up.  He looked good.  They moved him within the hour to a room.  I have been in many hospitals over the years and I was so happy when I saw the room with my own area for sleeping and with my own small TV.  I know that sounds selfish, but after listening to Disney for 24 hours a day for days you just have to have something else in your head.  

The surgery was successful.  While in surgery the two surgeons checked margins to make sure their wide margins did not have cancer on the edges.  They were all successful.  Dr Ross removed a large portion of the abdomen down through the abdominal wall including muscle.  At the skin level the area removed is very large but as Dr Ross continued to remove cancer cells and take a wide margin he narrowed the excision closer to the gtube hole.  In addition, I was concerned about a secondary site where Brandon had a fundoplication at age 1.  The area had scar tissue.  Dr Ross agreed once he opened up Brandon that this area seemed suspicious and cleared up the site and removed the entire area.  They took tissue from this area as well.  Dr Ikoma used robotics to cut out the cancer in the stomach, make a small incision where they removed the cancer and repaired the stomach.  The repair and the area removed was about 10 centimeters in a circle.  Therefore, they were able to remove a minimal amount. Long term after this heals Brandon should be able to eat his favorite cheese again.  

All the tissue was sent to pathology for further testing and review.  We should be able to tell us the stage of the cancer and then determine if more treatment is needed.  But we will not have these results until next week.  

Brandon went to his hospital room.  He was doing well with recovery.  He has a tube that was inserted in the site for drainage, he is under strong pain medication and he has medicine to avoid blood clots.  He also has drugs for Brandon's other chronic issues. Before surgery we received the results back from the CT scan from Scottish rite.  One of the things they found was Brandon has poor aeration of the lower lobes (lungs) with some bronchiectasis and consolidation in the right lower lobe to be correlated with any signs or symptoms of pneumonia.  This is not a new diagnosis.  Brandon had something similar on the MRI we did in Feb.  I called MD Anderson before the surgery to determine if we needed to do any treatments or anything special before surgery.  They basically said that we will be aggressive to treat the lungs after surgery.  We would probably have been fine, but yesterday Brandon started to loudly complain that he was about to have a seizure.  We began watching Brandon at 10:50 for seizure activity.  He really started with an aura, Brandon had a seizure, then it continued with the inability to respond, eyes rolling, and obvious activity.  MD Anderson was on it with their crisis unit in the room within 5 minutes after we alerted the nurses, then Dr Ross's interns, then they called their neurology department.  They gave Brandon adavin to stop the seizure at 11:15.  By 11:30 the activity stopped.  But poor Brandon was so sleep deprived, still unable to really communicate leaving MD Anderson staff a little on edge and watching his monitors.  Dr Ross arrived and so did the head of neurology.  I think we all agreed that the shock to Brandon's body with this major surgery, the fact that he was so sleep deprived, the fact that his lungs were starting to sound bad and lastly use of tramadol for pain all contributed to this seizure.  For Brandon this seizure was major and I think it really scared him.  The neurologist called Brandon's neurologist in Austin and they agreed to treatment to get him stable.  Brandon finally slept late in the afternoon and throughout the night.  It was pretty awful to watch.  

Because we were unable to get Brandon up yesterday Brandon's lungs got much worse.  He complained all night and most of today about his chest and his inability to breath.  MD Anderson did get aggressive, changed his medication, brought in inhalation therapy and percussive therapy to help clear the lungs. When I left tonight Brandon has was up and walking and even smiling some.  He still has labored breathing and after the walk went back to bed and fell asleep.  But he is much better than yesterday.  

We think we may be able to go home tomorrow or Monday as long as Brandon improves.  We will be back next week for the results of the pathology and to meet with Dr Ikoma and hopefully to remove the drainage tube.  

Many people reached out to me before we headed to MD Anderson with lots of great information.  I have read most of the things people sent.  But I have to say I find this book intriguing.  As I walk around MD Anderson and I think back to my school days I am slightly shocked at how many people are being treated for cancer.  I have to think about my school days and I didn't know that many people with cancer.  I could count them on my hand.  Today I know many many people with cancer and I have to wonder what is the cause for what appears to me as a major increase.  I think you have to put many factors together but I find this book very informed with solid information and recommendations on treatment that is not through conventional means.  I am considering changing Brandon's regiment and diet to more closely mirror some of these recommendations.  I share this with you in case you may be interested.  

and now goodnight.  

Leah

Cancer still sucks

Yes Cancer still sucks. We are back from Houston.  I am tired, my brother Jim is tired and Brandon says he is not tired but he was a little droopy eyed on the drive back.  I am beginning to understand this cancer a little better and trying to piece together all the information everyone is throwing at us or not throwing at us.  I think both are relevant.  To all you cancer survivors and those of you who have loved ones who have been through this journey my heart goes out to you.  I have been in the world of disabilities, fighting for services for Brandon, trying to let him live the life he loves and hoping I have done everything in my power to help him be the best he can be.  But this cancer thang.  It is a whole different world.  And one that is so heartfelt, sad, joyous, inspiring and filled with hope.  I cant express how profound it is to walk around MD Anderson seeing 100's of patients fighting the fight and surviving after receiving treatment that has left them weak, underweight, without hair, in wheelchairs, surrounded by family or not, but there for more hope.  Some of these patients have been doing this for years.  I met a mother who was staying at our hotel with her son at the hospital at his end of life.  She was talking to the hotel to see if she could keep her room even though she did not know how long he would survive.  I then heard the hotel working on accommodating whatever she wanted and then told me that is the hardest conversation they have with people who stay at the hotel.   I saw a family - all of the adult kids there with they mom who was celebrating that she gained a pound and she is now 93 pounds instead of 92.  The kids were taking meticulous notes on all her vitals.  She seems at ease.  I saw a patient who told staff she has no family and was doing the same thing we were all day long going from appointment to appointment by herself.  But one of the nurses was trying to make the day easier.  It is hard for me to be sad when Brandon is sitting in his chair singing the Beatles and asking about the weekend, if there will be a TV in his room and if he will be in pain.  But I know cancer is serious and Brandon's in not the exception to this. I tried for the last to days to grasp everything that everyone was saying.  Some of it is what they are not saying and some of it is a lot of information coming at you very fast.  I am sure I still don't totally understand and I am positive that Brandon does not understand.  But I did get a great deal of information on Brandon's cancer, the current treatment plan, how long for recovery from this round and the follow-up.  

The diagnosis - Dr Merrick Ross (dermatology oncology) said that Brandon has "Marjolin's Ulcers" a form of Invasive Squamous Cell Carcinoma.  I didn't understand what he said and later found the description of the cancer that evening.  It makes total sense.  This cancer comes from old scar tissue, can live in the body for years and then turn into a cancerous tumor. I am including this link in case you want to read more.  Please note this link is going over examples in the lower limbs.  But this cancer can be anywhere in the body.  We did hear over and over that this cancer is rare, it sounded like they have never seen this cancer going down the g-tube site (I tell all you moms this so none of you with kids that have g-tubes get nervous) and I am not sure Dr. Ross has seen this cancer in the stomach previously.

     Marjolin's Ulcer 

The other thing I heard from Dr. Ross was that this is an aggressive cancer.  You can see that in the article.  The 5 years survival rate is between 40% to 69%.  But that is aligned with what stage of cancer the patient is in.  That is the big question here.  We will not know what stage Brandon has until after the surgery is completed and the pathology comes back.  

I know this sounds bleak, but the good news is the pathology so far is showing well differentiated or moderately differentiated cancer cells which is better than poor differentiated.  There is no indication that the cancer has gone into the lymph nodes and it is possible that this is in the early stages.  It is also possible it is fairly contained to the area that goes down the g-tube.  All possible good news and can make for a much better prognosis.  Trying to stay positive here.  

The plan for treatment is to surgically remove the cancer site with wide margins.  Based on our conversation they will check the margins with pathology during the surgery.  The excision will go all the way into the stomach through the abdominal wall muscle.  They will use the robotic method to remove the cancer in the stomach and will use a minimally invasive method leaving more of the stomach remaining and with much less incisions. This will allow Brandon to heal quicker.  They will close the wound by sewing the two open sections together including the stomach and will use mesh to hold in place.  They are predicting 5 days min to be in the hospital and it will really depend on how Brandon is doing at day 5.  They are predicting that Brandon will be recovering for 6 weeks.  

We will all wait for the final pathology report after surgery (it takes several days) to figure out next steps.  It is possible he may need radiation, it is possible he will not need any further treatment.  But what they did say is a definite.  Brandon will need to be aggressively monitored for any reoccurrence in the current site or another area of the body where the cancer has spread.  Dr. Ross said they will be watching the lungs closely and they will be monitoring for any changes.  So we will need to go back on a regular basis (2 to 3 months) to monitor and make sure there is no re-occurrence.  This reminds me of my many friends always on the look-out for returning cancer.  We will be joining those watching for any sign of reoccurrence of their cancer and hoping we can join those celebrating their cancer-free anniversaries.  

Brandon is in good spirits and is ready for his second surgery.  He did get his answers to his questions.  Both surgeons like the Beatles.  It looks like he will still be able to eat cheese.  He will have a TV in his room (Uggh 5 days of Disney).  The last question was will he be in pain.  MD Anderson does a few things to help with recovery and pain.  They are using the minimally invasive approach which has a quick healing time.  They also inject anesthesia in the area where the will cut.  This relieves pain for several days and that allows them to use less narcotics for overall anesthesia.  Brandon will have the surgery April 17th first thing in the morning and the 2nd surgeon said they will be done by 2:00.  It will be a long day waiting. 

My brother Jim went with us to this visit.  While we were heading to day 2, I received a call from the assisted living facility where my Aunt Sue lives.  She fell down, hit her head and had a large cut on her face.  They called EMS and they were on their way.  Normally one of us would be there but we were both in Houston.  I want to thank Lindsey Granger and Melissa Rowan for stepping in at a moments notice to meet Aunt Sue at the hospital, get her through treatment and back to the assistant living facility.  We are all anxiously awaiting her 98th birthday on Monday.  It really takes a village.  

More later

Leah