Prayers for Tomorrow

I thought about what I would write in this post several times throughout the day.  Each time I was a bit overwhelmed.  Tomorrow, my baby brother (OK, so he's bigger than me and 32 years old) is having surgery.  A big surgery. 

• Matthew will have 60% of his liver removed (it is possible to remove up to 75% since it regenerates)
• He is scheduled to arrive at 5:15 in the morning
• Surgery is scheduled for approximately 7:30
• The surgery is expected to take 4-5 hours
• He will probably be in the hospital for 6 days

If I am overwhelmed, I can't imagine how my parents are feeling, and I can't imagine how he must be feeling.

I spoke with Matthew this afternoon.  I asked him for a song that would characterize how he felt or what he was thinking about the surgery.  He told me to pick a song in another language.  I asked, "How would anybody know what it meant, and how do you know what it means?"  He said, "That's the point.  I don't know what it means, but that pretty much goes with how I feel...I don't know."

So, I decided to pick a song that I thought would characterize the strength and resilience Matthew has shown.  He just keeps going.

I know that he is in the best place he could possibly be for this procedure.  I ask that you keep Matthew in your thoughts and prayers.  I hope to post some good news tomorrow afternoon, although it might be a few days before we truly know how recovery will go.

Thanks in advance for your thoughts and prayers....the family is truly grateful. 

Radioactive?

Today's contribution comes from Dad.....

Last Tuesday Matthew went up to M. D. Anderson for a pre-surgery PET scan. That was fairly routine

but we really won't know any of the results until the next time we can talk to his doctors, which probably

won't be until after his surgery on the 20th.

 

On Wednesday Matthew took a load of scrap metal that he had been accumulating beside the garage

over to the recycling center, something he has done several times over the last three months. But

this time they flagged him over - their sensors reported he was carrying contraband radioactive material!

 

This was a surprise to Matthew. He knows that some small items like smoke detectors could cause this

but to the best of his knowledge he just had the same routine stuff as before. The recycling center

employees pulled out a Geiger counter and spent 15 minutes combing through his stuff looking for

the radioactive source. They finally located it - it was Matthew! Turned out to be residual radiation from

the small amount of radioactive tracer he had taken for the PET scan.

 

And, no, he doesn't glow in the dark.

 

 

and here is Emily's contribution.....

Fighting Cancer is as hard as herding cats....

A Bit More News

Results from the CAT scan came back.  The tumor has shrunk a bit more.  It is now approximately 4 cm.  This is a great thing!  On the downside, the unidentified spot on one of his lymph nodes also appeared to have shrunk.  This leads them (the doctors) to believe that this spot is most likely cancerous as well.  It is still unknown what will be done about this spot.  The PET scan has now been approved.  Matthew will go in for the PET scan tomorrow, and while we probably won't have results tomorrow, they should get some more information from this scan.  As of now, surgery is scheduled for the 20th---it is presently scheduled for 7:30, however, that will not be confirmed until the afternoon of the 19th.

For now, I will share that I remember Matthew having a Beach Boys tape when we were younger.  I will share this song, and ask that everybody keep the Good Vibrations coming.

Long Awaited Update

A few people have messaged me, wondering what is going on, and why I haven't posted more.  I returned back to work, and activities have resumed, so it has been on my to-do list for a while. 

Things have been quiet for Matthew lately.  He has been resting his body in preparation for surgery.  This means that he hasn't had any treatments or doctor visits lately, so there hasn't been much to share.  He has been continuing to work with our Dad to house repairs.  Most recently, he has painted some of his ceilings. 

Today, he had another round of tests at M.D. Anderson in preparation for the surgery.  He was scheduled to have a PET scan.   A PET scan is a nuclear medicine imaging technique.  In a PET scan, the cancer will actually "light up."  However, upon arriving at the hospital this morning they learned that the insurance placed a 72 hour review on the procedure.  Although not an outright denial, the timing did not allow for them to wait and reschedule.  Matthew ended up having another traditional CAT scan.  On Monday he will meet with the surgeon again in preparation for the surgery.  As of now, surgery is still scheduled for the 20th, so he is only 10 days away. 

Emily requested this song for Matthew.  "Now that that don't kill me, can only make me stronger."

More updates when we have more information.


 

Chemo Round 4

Matthew is finished with round 4 of chemo and it was not too bad.  They took out one of the drugs in preparation for the liver surgery (which has tentatively been scheduled for September 21st).  Matthew said this time his head didn't hurt as bad, and he didn't have the headaches.  While he had some nausea, he was still pretty productive all 3 days.

My dad has been busy with repairs that are necessary to keep the insurance on the house.  Mom has stayed busy with Grandma and Isaac will be registered for school next week.  He will be attending 5th grade at Clute Intermediate, which is just down the street from Matthew's house.

I will update as soon as we hear anything new.

Some results

OK, I got lots of information from about 5 different phone calls today....so let's see if I can get everything straight.  I will go in the order that I got the information.

The first was about Lynch Syndrome.

Lynch syndrome, often called hereditary nonpolyposis colorectal cancer (HNPCC), is a type of inherited cancer of the digestive tract, particularly the colon (large intestine) and rectum. People with Lynch syndrome have an increased risk of cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, skin, and prostate. Women with this disorder also have a high risk of cancer of the endometrium (lining of the uterus) and ovaries. Even though the disorder was originally described as not involving noncancerous (benign) growths (polyps) in the colon, people with Lynch syndrome may occasionally have colon polyps. In individuals with this disorder, colon polyps occur at an earlier age than in the general population. Although the polyps do not occur in greater numbers than in the general population, they are more likely to become cancerous.

Due to Matthew's age, the doctors felt strongly that there was most likely a genetic connection.  However, they screened Matthew, and Matthew had NONE of the 4 Protein markers for Lynch syndrome, and pathological examination of the cancerous tissue did not appear to be indicative Lynch either.

Next, was the results about the chemotherapy.  It appears that the tumor on the liver IS RESPONDING to the chemotherapy, and has shrunk about 10-20%.

Which leads us to what is next.  Due to the location of the tumor, Matthew will have to have about 60% of his liver removed.  That's a lot right!  However, it is actually possible to remove up to 75% of the liver because it regenerates.  Matthew's liver will actually regenerate in about 8 weeks.

Here is where the question marks, and the word BUT comes in.  The scan showed a "suspect lymph node" in his pelvic region.  The liver surgeon and liver oncologist need to confer with the colon oncologist to find out what to do about it.  It is possible that it is nothing of concern.   If this is the case, Matthew will have surgery to remove the tumor on his liver in about 6 weeks.
If the lymph node presents a problem, we are not sure what will happen.  There are several possibilities.  They could do more chemo, they could do radiation, they could do surgery on the lymph node, they could possibly remove the liver tumor and the lymph node at the same time.  We won't know for about a week. The concern with more chemo is that it actually causes the liver to shrink, which would be a problem considering the amount of his liver that has to be removed.  The concern with doing the surgeries separately is recovery time and scar tissue.

So for now, the news is pretty good, but we still wait for all the answers.

Now, I am going to go off on a little rant about the way insurance works.  As I have stated before, Matthew only had/has a catastrophic incident health insurance policy.  So, Cancer is catastrophic right!?  Well apparently, the policy only allows for a certain number of doctor's visits, and Matthew has exceeded his limit. This is where it gets messed up!  If you have coverage, M.D. Anderson accepts whatever the insurance pays, and bills you no further.  However, if your insurance will not cover the costs, M.D. Anderson requires you to pay UP FRONT, before you can see the doctor.  Believe me, one day of appointments, with 2 or 3 doctors at the top cancer treatment facility in the country DO NOT COME CHEAP.  The part that makes me most angry is Matthew's bill for today was probably higher than what they would accept as an insurance payment, and of course this hits the people that can least afford/or don't have access to insurance the hardest.  So, insurance is a huge issue that should not be ignored just because you have coverage (I know I am guilty of this.) ......*steps down from the soapbox*

On a final and unrelated note, today is my parents' 39th Wedding Anniversary.  This is a  huge accomplishment and great example.   For better, and for worse, may they have many more years together (but let's hope they are better!)  

Another Round of Appointments

It is time for another Round of appointments.  Matthew has appointments at M.D. Anderson over the next 3 days.  He will have an MRI, scans, and other tests to find out if the chemo is working, and as part of the studies he is involved in.  His doctor's appointment is Friday morning.  We are hoping that the chemo is doing its job quickly and that the liver tumor will be small enough to remove.

At this point, I am unsure what will happen if the tumor has not shrunk to the desired size.  I will update as I get more information.