Monday, May 26, 2014

Stage 4 - No More!

Stage 4 - No More
Stage 4…who knew?!  It’s one of those questions you never really want to know the answer to, so I never asked…and my doctors never said.  Until now.   People always want to know.  So, I finally asked.  Not that it matters.  It’s irrelevant now.  But it’s still a shock to the system to hear.   How would knowing that at the beginning have affected my psyche?  Would I have been more frightened or felt completely helpless?  I don’t know.  I hope not.  I hope that my faith and resulting strength would have been no different given that information.  But how would my family have reacted?  I don’t know. But I’m guessing not well.  So, now that I have this information what do I do?  First I thank God that my doctors never mentioned this little ditty to me.  Psalm 68:19  Praise be to the Lord, to God our Savior, who daily bears our burdens.  I knew from the get-go that I didn’t want to delve too deeply into my diagnosis.  I didn’t want to Google it…no WebMD for me (Dad, stop Googling!).  I knew all I needed to know.  My cancer is extremely rare, and it was huge. 

So, now what do I do?  I praise all the more loudly as I realize the miracle is even greater than I first thought.  Psalm 71:14  As for me, I will always have hope; I will praise you more and more.  When Dr. Hanna informed me that my cancer had been stage 4, he explained to me the way tumors are staged (sorry if I go all scientific on you for a minute).  They are classified by T (tumor), N (lymph nodes) and M (metastasized).   Anything that has metastasized is automatically Stage 4.  Then there are staging for spreading to lymph nodes (1-3) and there are tumor classifications (1-4).  His exact words were, “Your tumor earned a 4 on its own merit.”  I love that quote.  I can’t explain why. Except that I’ve told you how competitive I can be…apparently my tumor is too.  It wasn’t going to settle for any average rating.  It was going to be the biggest, rarest tumor it could be.  I would expect nothing less.  Just like the 11mm kidney stone I had 3 years ago.   But just like my tumor that kidney stone miraculously disappeared (they couldn’t find it during surgery even though it was on the scans the day before?!)  Anyways, I digress.  My tumor earned a 4 based on its tremendous size (remember the large plum?), rare type of cancer, invasion of brain (that was news to me) and eye socket, base of skull, upper and lower jaw, trigeminal nerve and nasal cavity.  I think that’s all, as if that’s not enough. 

Dr. Hanna is a world renowned surgeon and oncologist, and head of the entire Head & Neck Department at MD Anderson.  He travels the world giving seminars and teaching.  Apparently so do I!  He told me, “You travel with me all over the world.”  I looked at him quizzically as he said this, not understanding what exactly he meant.  Apparently I’m quite a case study (not a head case though).  He takes my scans and talks about my case to other doctors.  I was in Taiwan a couple weeks ago.  I told him that was good, because it was probably the only way I would ever get there!  So, I’m like “Flat Stanley” visiting locations far and wide.  I joked that he needed to take pictures of my scans in each country he goes to.  Instead of Flat Stanley, I’m “Flat Scan-ley”.  LOL.  Sorry, I couldn’t help myself!  So, stating what seems to be the obvious at this point to me, he called me the “miracle girl” of the Head and Neck Department.  Once again, I’ve come full circle.  A year ago there were prayers circulating around the world for me, and now my scans travel the world as a result of those prayers.   So many miracles, even the esteemed Dr. Ehab Hanna recognizes them.  Job 5:9  He performs wonders that cannot be fathomed, miracles that cannot be counted.

So, I guess that leads me into the past week with scans, doctor appointments and results.  I think it must be clear by now that my appointments went extremely well!  I had appointments with dental oncology, radiation oncology, main oncology as well as both a PET CT and MRI.  Coming up on a year since treatment began, these scans and appointments would tell me a lot.   And, first things first…my PET CT showed that my tumor had almost all but disappeared, but there was still some ‘activity’ around the peripheral edge.  The radiologist concluded, as did both Dr. Hanna (who is usually more cautious, but was almost giddy) and Dr. Frank (who was his usual chipper self) that “most, if not all” of the activity appeared to be inflammation and not active cancer cells.  They still could not conclude with 100% certainty that there was no cancer, as the cancer and inflammation appear the same on the scans.  However, based on the location and presentation, they seem quite sure. The activity that is present has decreased since last time too.  And how could I almost forget to mention the even more important news that the cancer has not spread anywhere else either!  So, great news abounds! 

It was great to see Dr. Frank (my radiation oncologist) again.  It had been over 7 months since I last saw him and we had talked about my Gladiator “Comeback Event” that I would be doing this past November. Back at that last visit, I told him about Team “Cancer Plum Sucks” and he told me to bring him one of our team shirts.  So finally, at this visit, I got to present him the shirt.  He loved it.  It’s weird, but it’s like visiting an old friend…an old friend who saved your life.  He was thrilled with my progress and once again I had photos taken of the affected and treated areas (remember my ‘graduation’ photos?).  But this time there was no bald spot…only thick new hair that is also extremely curly.  It’s funny trying to tame the curls under the rest of my straight bangs!  This time there was no burned and scabbed over skin on the right side of my face and neck…only smooth, scar free skin that shows no evidence of treatment ever even taking place.  This time I could open my mouth wide enough for them to get pictures in the first place. This is the only visible evidence of my tumor…a large hole in the roof of my mouth (unseen to anyone but me, my doctors and dentist, or anyone who would like to look in my mouth…eww).  Yes, the changes are amazing.  I still have many challenges (prosthetic palate, loss of smell, loss of tastebuds, among other things), and things I will have to live with for the rest of my life, but I am so lucky…to just be.  To be alive.  To be healthy.  To be a mother.  To be a wife.  To be a daughter, a sister, a friend.  To just be.   It’s strange, because once again it’s come full circle.  I look like I used to look again, and another God-incidence (thanks Wendy and Christine for this new term to me!) is that I weighed exactly the same amount (to the ounce) that I weighed the very first time I got on the scale at Dr. Frank’s office (and NO, I’m not going to share that #).  How is that for strange?!  Full circle my friends, full circle.

It wouldn’t be a visit to MD Anderson unless my days were packed full, so I also saw Dr. Gidley, the ENT specialist that I saw when I first noticed the hearing loss.  You may remember that he gave me two options:  get a tube to drain it or pray for a miracle (which would require the eustachian tube to open on its own, which would be next to impossible).  Well, I think I mentioned in a previous post that my ear did clear up on its own.  But I wanted to have another hearing test (to prove it both to myself and them) as well as see the doctor.  When I called for the appointment they asked if everything was OK.  I said it was better than OK.  They didn’t understand why I wanted to see him then.  I couldn’t really explain it except to say that I wanted him to read the results of my new hearing test and compare the MRI from last time to this time, to see if the fluid really is gone or just hiding out somewhere waiting to attack some other day.  With hesitation, they scheduled me to see him.  I think they thought I was crazy (hey, no comments from the peanut gallery).   So, when I finally did get to see him, he was just a little dumbfounded.  He said that my hearing is completely normal now, where I had a previous 40db hearing loss.  This number doesn’t mean anything specific to me, not knowing the decibel range for good versus bad hearing.  But all I know is that I could hardly hear at all in that ear and now I can. The eustachian tube was opened, and there was no fluid in the ear (just a little in the mastoid bone behind the ear).  Where there had been irregular motion of the eardrum and nerve functions before, there now was none…everything was normal.  The only exception was my hearing at ultra high frequencies, which he said is pretty normal for most people…a few loud concerts could cause that (Bon Jovi ’87…rock on!)!  So, he had no real explanation as to why it cleared up, but we were happy to tell him that we go with the ‘Miracle Theory’.  He too seemed to agree.  Psalm 77:14  You are the God who performs miracles; you display your power among the peoples. 

Yes, it was a great trip to Houston!  Three long days of tests and doctors appointments, and lots and lots of waiting.  But I would wait as long as I had to for this amazing group of doctors.  We arrived home on Friday evening, May 16th, just in time to get gussied up for Molly’s ‘Platinum Ball’.  Yes, it was a time of celebration for Molly and the closing of her wonderful competitive dance season.  But it was also a time of celebration for me and my family and the closing of another chapter in the book of my life.   Stage 4 – no more.  Time to close that door!

1 comment:

  1. Beautiful writing Cathleen. Moving yet humorous. It takes a special person with a special kind of faith to find humour through such trials and never losing hope. So happy that you are doing well and look forward to seeing you bowl another 3 right in a row end game strikes again! Amazing!
    Kem Davis