Tenacity!

Warning...graphic photo!  A friend of mine (Thanks Tiffany) posted this on her Facebook feed.  I liked it, and my comment was "tenacity".  I knew what that word meant, but I googled the definition anyway, and I liked it even more.  First, because I had no idea it literally meant the ability to "grip something firmly", but more so because it means

"the quality or fact of continuing to exist;  persistence." 

Damn straight.  I will continue to exist.  

Tenacity.  

My word of the year.

te·nac·i·ty

təˈnasədē/

noun

1. the quality or fact of being able to grip something firmly; grip.

   
   

   "the sheer tenacity of the limpet"

   
   

   synonyms:

   persistence, determination, perseverance, doggedness, strength of purpose, tirelessness, indefatigability, resolution, resoluteness, resolve, firmness, patience, purposefulness, staunchness, steadfastness, staying power, endurance, stamina, stubbornness, intransigence, obstinacy, obduracy, pertinacity "she practices her gymnastics routine with the tenacity of a bulldog"

   • the quality or fact of being very determined; determination.

     
     

     "you have to admire the tenacity of these two guys"
   • the quality or fact of continuing to exist; persistence.

     
     

     "the tenacity of certain myths within the historical record"

Good news!

I had my PET scan on 2/16/2017.  Here are some of the findings:

PET CT SKULL BASE TO MID THIGH 2/16/2017 11:50 AM

HISTORY: C82.10: Follicular lymphoma grade II, unspecified site (HCC).  

COMPARISONS: 7/19/2016

PROCEDURE: Prior to administration of F18-fluorodeoxyglucose (FDG), the fasting
blood glucose level measured by glucometer was 97 mg/dL. Approximately one hour
after the intravenous administration of 15.3 mCi of F18-FDG and oral
administration of contrast, emission PET images of the body were obtained from
the cranial vertex to the mid-thighs. Non-contrast CT images were obtained for
attenuation correction and for fusion with the emission PET images.

HEAD AND NECK: There are no areas of abnormal FDG uptake in the soft tissues.

CHEST: There are no areas of abnormal FDG uptake in the soft tissues.

ABDOMEN: There are no areas of abnormal FDG uptake in the liver, spleen or
kidneys. Physiologic GI activity is seen.  

PELVIS: There are no areas of abnormal FDG uptake in the soft tissues.

SKELETON: There are no focal areas of increased FDG uptake.

INCIDENTAL CT FINDINGS: Right-sided Port-A-Cath is present. Markedly
decreasing size of the mesenteric masses in the abdomen and pelvis are seencompatible with the improving adenopathy. Stable postoperative changes of prior
laparotomy are seen.

IMPRESSION-

In comparison to the prior studies, this PET/CT study shows resolution of the
previously seen abdominal and pelvic adenopathy.

This all means good things.  The lymph nodes in my abdomen that were huge are now not huge.  The chemo did it's work, and now I will start the "maintenance" dose of rituxan every two months for two years.  This is to keep the lymphoma in remission.  I asked my oncologist what do I say now?  "I had cancer", or "I have cancer".  He said I still have cancer, but it is not "active".  I'll take it!  

Next up is the abdominal wall reconstruction surgery.  I'll save that update for another day...

Thanks for partnering through all of this with me!!!  😍

News Segment - PBS Newshour

WOW.  This was really awesome.  A segment on OPB Newshour tonight all about immunotherapy and hope.  Video and story here:  cancer immunotherapy  So worth watching!

Viva Mexico et Rebecca!

My friend Rebecca came to Portland, OR to freeze and help me out while Joe was/is in Kentucky with his family.  She is an excellent friend and chef, and made me all sorts of wonderful food, which is now safely tucked away in my refrigerator and freezer.  I feel like a well-taken care of squirrel with a whole lotta nuts in storage.  Ah....

Here is an photo of her (when I visited her in Merida, Yucatan, and we went to the Oaxacan festival and ate crickets!)

We went to the Women's March here in Portland, OR January 21 along with 100,000 of our closest friends! 

We went to the zoo, and saw Nora, our young polar bear, the new elephant lands digs, and other animal friends.  

We went to a very cool winery in Oregon City (who knew??) that is reminiscent of Spain!  Villa Catalana Cellars

 And the Portland Winter Light Festival at the OMSI Waterfront.  Light Festival

It was a relaxing, enjoyable and fun time.  Can't wait to head to Mexico to visit her!!!  

More on the quilt!!! (and one more tidbit about last chemo)

In addition to the fantastic quilt, out of two of the squares, Dawn assembled a fantastic carrying case, with custom-length handles.  It's perfect, and has the admiration of all!  I LOVE it!  Thanks so much!

Stephanie's Leg Square

Edie's Flower Square

CHEMO INFUSION 6 IS FINISHED - I THINK IT'S DONE!!!

Hi, I've been absent.  I've been SUPER tired.  

I had my seemingly last chemo treatment on Thursday, 2/2 with the pre-meds (steroids), a bag of bendamustine and a large bag of rituxan;  then on Friday, 2/3 with the pre-meds and my LAST bag of bendamustine!!!  

Just to remind you, bendamustine is considered a chemotherapy drug.   It is related to mustard gas:  The nitrogen mustards are cytotoxic chemotherapy agents similar to mustard gas. Although their common use is medicinal, in principle these compounds can also be deployed as chemical warfare agents. 

During World War II nitrogen mustards were studied at the Yale School of Medicine by Alfred Gilman and Louis Goodman, and classified human clinical trials of nitrogen mustards for the treatment of lymphoma started in December 1942.  Also during World War II, an incident during the air raid on Bari, Italy, led to the release of mustard gas that affected several hundred soldiers and civilians. Medical examination of the survivors showed a decreased number of lymphocytes. After World War II was over, the Bari incident and the Yale group's studies eventually converged prompting a search for other similar compounds. Due to its use in previous studies, the nitrogen mustard known as "HN2" became the first chemotherapy drug mustine.

Common adverse reactions are typical for the class of nitrogen mustards, and include nausea, fatigue, vomiting, diarrhea, fever, constipation, loss of appetite, cough, headache, unintentional weight loss, difficulty breathing, rashes, and stomatitis, as well as immunosuppression, anemia, and low platelet counts. Notably, this drug has a low incidence of hair loss (alopecia) unlike most other chemotherapy drugs.  (Yes, I did not lose my hair!!)

The irony here is that I used to work out at the Umatilla Chemical Depot in Hermiston, OR, where our mission was to destroy these chemicals, including Mustard Gas (some type of mustine compound), VX Nerve Agent and Sarin Gas.  The "Weapons of Mass Destruction" were here in plain sight, not lurking in Iraq.  Umatilla Chemical Depot  

Rituxan  is not considered a chemotherapy drug;  it is a type of antibody therapy that can be used alone or with chemotherapy. It works in different ways to find and attack the cells where cancer starts. It targets and attaches to the CD20 protein found on the surface of blood cells with cancer and some healthy blood cells. Once attached to the CD20 protein, rituxan helps my own immune system destroy the cancer cells (i.e immunotherapy vs. chemotherapy) and/or by destroying the cancer cells directly.  However, it can also harm healthy cells in your body. (what-is-rituxan)
  
So, I will have my PET scan on 2/16 (the radioactive one for which I'm not supposed to think before, and the scan lights up in pretty colors) to determine if the cancer is in remission.  I meet with my oncologist on 2/23 to go over the results.  If the lymph node "tumors" have diminished and I am in remission, chemo is done (for now - this cancer frequently and randomly pops out of remission).  If not, I will continue chemo.  But Dr. Lufkin is pretty sure it is in remission, based upon the CT scan done the end of November 2016.  Good news!

I will start my 2 years of Rituxan infusions every 2 months as soon as my surgery is completed and I am in recovery for that.  I have a meeting with my surgeon, Dr. Jordana Gaumond, (who will hopefully fix my surgical hernia) on 2/21 to discuss the surgery and maybe schedule it for sometime in March or April.   It will be major surgery including an 8" vertical incision in my abdomen (the emergency laparotomy last February 2016 was a 5" incision), a 10" x 10" (or so) alloderm mesh and 4 or so bone or muscle anchors to hold to mesh in place.  I've been told the anchors will cause pain for 3-6 months - fun summer ahead!! 

She's estimating I will be in the hospital 7 - 10 days.  Yay!   When I had my previous surgery, it was emergency, so I had no way to anticipate what was to come.  Now, I know.  And the anticipation is not fun.  

This link has a pretty accurate picture of before and after:  Abdominal Wall Reconstruction  I'm not sure why the last photo (side view of repair) is pictured inside a styrofoam cup, but it is what it is.  I'll leave it as a link, in case you are squeamish re: all this stuff.  I have had to get over being squeamish.  


These are weird times.  For a multitude of reasons.   Be well.  

Infusion 5 in the bag!!! ONE MORE to go!!

January 5, 6 & 7 came and went, with my 5th infusion of these lovely chemicals.  One more to go!  And, once again, Portland received snow, and now ice today (January 8th) - we don't do well with either - well, we (Joe & I) do well, but Portland doesn't.

I brought my wonderful quilt!  Everyone loved it!  Dr. Lufkin, his medical transcriber, the oncology nurses (several of whom quilt, and watched the video of rockstar Dawn on her Millennium quilt machine - they all want one now - see previous blog post for video).  Also, several of the patients and their visitors loved it.  And I found out there are a bunch of Cubs fans here in Oregon...but, of course. 

This photo was taken after I had woken up from the 4 pre-med bags, before the chemo bags began.  I have to say that Dawn designed this quilt and border exquisitely, as that green border at the top was perfect for me to tuck my head under and shield the light.  The blankets they have there are warmed, but all white, and don't shield any light.  Superb nap!  (Lousy photo of me, but I just woke up from crazy chemicals... 😊💩)

At the Compass Oncology office, they had the January 2017 edition of Portland Monthly Magazine  (Portland top doctors and nurses - 2017), and my oncologist (Robert Lufkin) is in the list!

Starting to do research on the hernia surgery, which will be next!  Hopefully in March or April.  So glad 2017 is here, and looking forward to remission, recovery, healing and health.  Thanks for hanging in there with me on this unpleasant, but surprisingly tolerable, journey.