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