Intestinal Fortitude...Today's report from the Mayo Clinic (Monday, August 15, 2016)

(A Post from Bill....this is a note I sent a few minutes ago to our family about the events of Allyson's day at Mayo)

Family and Friends,

It is almost 4:30pm CST and I am sitting in Allyson’s hospital room next to Allyson – who is now resting in her room.  Omi (Allyson’s Mom) and I have been at the hospital throughout the day.  The sounds of the hospital (background noise, IV, catheter, a machine that is connected to Allyson’s shins/calves that spurts out air ~1-2 mins to avoid clotting) are mixed with Allyson’s breathing as she rests from the days events.  Allyson is now sleeping and hopefully on her journey to recovery from the trauma and toils of Tumor Mabel that thankfully was removed earlier today.

We arrived at the Mayo’s St. Mary’s campus in Rochester, MN early this morning for admission at 6:45am.   Allyson was escorted into a personal prep room where she met with an admissions nurse, an IV nurse (who must have needed her coffee because she wanted to get the IV in record time), the pharmacy about her current meds, and we met the Hospital Chaplain who offered to connect us to our own faith leaders and who also offered a very sincere prayer on Allyson’s behalf.  After all the prelim procedures they wheeled Allyson off to the pre op at ~9am.  We were able to stay connected with the process with a nurse who was with Allyson throughout the procedure who called me to give me regular updates – she is leaving pre-op,  now in surgery, they just made an incision, etc.  I appreciated the regular updates.   Allyson procedure started at exactly 10:04am.  The Dr. finished the procedure at 12:12pm.  Allyson was in recovery until ~1:45 before they brought her to her room where Omi and I have been waiting.

The doctor performing the procedure is specialized in removing cancer cells surgically.  He has specific training in intestinal procedures and has been most gracious in helping make this as simple as possible.  When we met with him on Friday, he told Allyson that she did not need to do the whole pre-op intestinal flush that in itself is traumatizing.  He said, “I can do it without the cleanse”….” as long as you promise me you will not eat a deep dish pizza on Sunday night - not that you look like you would do that anyways.”   Allyson was elated with that news and made the evening and morning much more pleasant.     

Dr. Truty (the oncology surgeon who did the procedure) found me and Omi after the procedure and reported that everything went as planned.   They went in laproscopically to examine the small bowels and all the tissue surrounding the digestive tract.  They then proceeded to open surgery by making an an incision (~6” in length above the belly button) to physically find the tumor that was discovered in the PET Scan 3.5 weeks ago.   He removed that tumor and then laproscopically and through physical examination went through every centimeter of Allyson’s small intestine to see if any more tumors were present.  He removed a large tumor and said that it was creating an obstruction in Allyson’s bowels because their was fluid and air above the tumor and nothing below.  He said this would cause the immense pain that Allyson has been experiencing over the last several weeks.  The good news is no other large tumors were found after examining the tissue two different times  - this is in the same area where mulitiple tumors were found in December so this is further evidence that the immunology drug has been working.  The Miss Mellie tumors were working on the immunology drug – Keytruda;  we are just not sure why it has not worked on Miss Mabel – the name we have given to this newest tumor. 

In the operating room was also a pathologist that was examining tissue as the procedure was being completed.  The tumor tissue that was removed will be genetically analyzed so that a treatment plan can be modified to include Miss Mabel type cancer cells.   I expect that we will have a modified treatment plan after the genetic testing is completed.

Allyson handled the entire procedure without incident and had a routine recovery.  The anesthesiologist, at the surgeon’s request, gave Allyson an epidural so that she can manage her pain over the next few days.   We are not sure how long Allyson will be in the hospital but the thought prior to the procedure would be 4-5 days for monitoring and to make sure the small intestine connection /staple could absorb food/liquid.

Admittedly, I had a big pit in my stomach walking into this hospital today because our last experience in this hospital.  Actually, the last two experiences have been traumatizing (Gamma Knife and the Bronchoscopy that put Allyson into ICU).  I was hoping for a positive but psychologically this place honestly is quite traumatizing.  I am grateful this hospital exists but I am certainly ecstatic to leave….and will grateful to take Allyson home later this week.

Our children our home today with their cousin Joseph Udall and his special wife Lucy.  We are so grateful Joseph/Lucy are able to spend their semester break from BYU to help us this week.  I texted Ruth and Grace updates today as the events unfolded because each of our children could sense the importance of today’s events and wanted details as soon as they were available.  

Allyson continues to rest peacefully and her machines continue to buzz a quiet humm…we are grateful that everything has gone well so far and for the care she has received.   Know that we appreciate your continued support and prayers on our behalf.  Miracles continue to transpire and I am grateful to witness our Allyson valiantly push forward…..

Love

Bill

My "Streak"

There is a streak in me, a streak that I can not name.  I do not know what to call it, but it is there.  It is part humor, part mischief, and part boundary pusher.  It isn’t evil or bad, but it has a strong will.  Bill says my streak makes his life exciting.  

My streak, which I struggle to name, is what prompts me to say, “Bill pull over!  Right there at Walgreen's.”  Just a half-hour before we found out my cancer was aggressively invading my small intestine and I needed surgery to take it out.  I marched into Walgreen's and scanned the candy shelves with laser focus.  I filled my arms to overflowing: a large bag of Red Vines licorice, Kit-Kats, Raisinets, Peanut M&M’s, etc.  I barely made it to the counter before my precariously balanced candy tumbled out of my hands.  I bought it all.  I shut the car door with Bill staring at me with a look of, “what was that all about.”  I reached in and starting eating, ripping the bags open like a child on Christmas morning tearing at the wrapping paper anxious to get at the gift inside.  Cancer be damned, I was going to be on a liquid diet soon enough, so I'd better get the good stuff while I could.  I barely made it through a hundred calories worth of sugar, when I got too sick to eat it.  Well, I made a valiant effort.

After being outside for a bit too long, I got a bad sunburn.  One of my friends looked at my lobster colored arms and admonished me to be careful and to put on more sunscreen.  I looked at her, with a twinkle in my eye and replied, “Why?  What's going to happen?  Am I going to get skin cancer?”   She stood there stone faced, not knowing what to say.  I assured her it was o.k. to laugh at cancer.  I still think my joke is hilarious, my daughter thinks it is morbid.

Bill and I sat in the all too familiar oncology office waiting to meet with the surgeon who would remove the part of my small intestine that was trying to kill me.  I had read about him before I arrived for my appointment.  Like most of the Mayo doctors, he specialized, then specialized again, then again and again and again and again.  Their degrees just never stop! Well, this particular surgeon specialized in taking out melanoma and breast cancer.  I watched a YouTube video of him explaining how he is changing the way double mastectomies are performed.  Ah, I thought, I know just what I am going to ask him.  

He and his entourage entered the examination room with a whoosh of air.  One moment Bill and I were sitting still, alone in our thoughts, and the next minute I was being peppered with questions from the surgeon, with a nurse furiously taking notes, an oncologist standing off to one side adding his two cents, and another doctor in training, just hoping he could someday command the room.  After a multitude of medical back and forth, he asked me if I had any questions.  I told him, yes, in fact, I did.  I asked him if he was a boy scout?  He looked at my quizzically.  Boy scouts, I explained, are taught that when they go somewhere they should always leave it better than they found it.  He was taking something out of me, and well, shouldn’t he leave me better than he found me?  Breastfeeding  five children had left my chest saggy and small, it only seemed right that his expertise be used in both areas, my gut and my chest.  He looked at me a little stunned, his entourage looked at him not sure what to do, I started to giggle and then he broke out into a belly laugh.  “I like the way you think,“ he said.  “Keep it up.”  I was surrounded by some of the world's best doctors discussing how to save my life, at the end of the discussion my “streak” thought it only appropriate to bring up my much needed breast augmentation that I never intend to get.  

What is this streak?  I don't know, but it has made some dark days just a bit brighter and for that I am grateful.  

LIVING

I know.  I know.  I haven’t written in a long time.  I’m sorry.  I needed a break from the cancer world; I wanted to be normal so badly.  I didn’t think about cancer, I didn’t read about cancer, I tried to live like I used to live.  

I planted my garden with tiny tomato plants, marveling that they would quickly grow giving us a plentiful harvest before the first frost kills them. My passion for succulents took over two huge planters. I taught Ruth the magic of yeast, flour and water…bread.  I worked with Grace spreading what seemed like endless piles of compost and mulch.  I gorged myself of pumpkin curry when Bill took me on a date to my favorite Thai restaurant. The “C” word was considered profane in our house, so we simply didn’t talk about it, I wanted to focus on living.

Then in June we all went to Utah unexpectedly for a death.  It was shocking. My dear nephew Teddy passed away; he was only nineteen years-old, he died from tonsillitis. It was surreal.  

I couldn’t help thinking about what I would want my funeral to be like.  Bill and I already made arrangements for my burial plot.  We’ve discussed my wishes and wants, me questioning if my desires really matter because the funeral is really for the living, not the dead.  I saw my brother and his family, their grace in handling tragedy, not sure I could do the same if I was in their shoes.

Shortly after Teddy’s funeral with death still lingering in the air, my mother, my family and all my siblings’ families invaded the Disney Wonder ship in Alaska for a seven day cruise.  There were thirty-seven of us, yes, thirty-seven.   We came armed with a Settlers of Catan game, some good humor, many large appetites, strong political opinions, and immense gratitude that we could spend time with the people we love. Furthermore, we got to experience the majestic beauty of Alaska while doing it.  (Have to put a plug in here for Victoria, B.C. Canada, where we explored before the cruise.  Just do it.)

After the cruise Bill, the kids and I spent the next ten days exploring western Canada. Gorgeous, simply gorgeous.  The mountains jut high in the sky with glacier blue rivers cutting winding paths below the peaks.  It seemed there was a majestic waterfall, cascading hundreds of feet, around every bend.  We cruised along in our rented minivan with our eyes devouring the almost too perfect scenery, all the while singing with Louis Armstrong at the tops of our lungs, “What a Wonderful World.”  

We also drove to Bill’s parent’s house near Edmonton and spent time with his family on ‘the farm.’  Sammy picking raspberries until his fingers were stained red, with his lips betraying where most of the raspberries had gone, Grace feeling empowered driving the Gator, William leading the boys on an adventure…summer being what summer should be.

Between the vacations and our other comings and goings, only on treatment days was I forced to join the world of mutated cells and cancer.  In April my CAT/PET/MRI scans showed all the tumors were being completely devoured by my superhuman T-cells.  Physically I was feeling better and I felt real hope.  The cancer was almost gone.  I was really going to beat this thing!  I would continue to celebrate birthdays, travel to Ireland, discuss politics, kiss scrapes and bruises on little knees, listen to boy problems, and well, live.  

In Spring I was feeling better, but as the tulips died back and the coneflowers emerged I hit a plateau, nothing concrete, just not feeling great.  I believed I was suffering from some side effects from the medicine.  However, my belief was shattered last week.

I flew directly from Canada to the Mayo Clinic in Minnesota.  After getting poked, prodded and scanned, I wasn’t even nervous when I met with my oncologist to get the results.  I just knew the cancer would be gone.  I completely discounted my extreme exhaustion, barely able to move, but not wanting to miss out on the fun, forcing myself out of my cabin on the cruise; me losing weight because I had a hard time eating with the constant feeling of nausea reeking havoc on my digestive tract; me being curled in a ball in bed at Bill’s parents house with extreme pain in my abdomen.  After my doctor asked how I was doing, I explained that the medicine was causing me to have more bad days than good, then he told me the test results, it wasn’t the medicine.  Good news: brain tumor…gone.  Lung tumor….almost gone.  Bad news:  cancer has mutated and growing aggressively in my small intestine.  

I sat there hearing what he had to say, not really understanding.  How could the cancer be shrinking in my brain and lung yet be growing in my small intestine?  Basically, the cancer has mutated around my immune system, Miss Mellie brought her evil cousin Miss Mabel to the party.  Miss Mellie (the cancer in my brain and lung) is getting her can kicked by my immune system.  Miss Mabel  (the cancer in my small intestine) looks at my immune system, laughs and is quickly spreading her evil cells throughout.  So, the doctors are going after her.  I have to have all or part of my small intestine out in two weeks.  Miss Mabel doesn’t know what she has comin’…but I do, a Mayo doctor with a scalpel in hand. Watch out, Miss Mabel we are coming for you!  The doctors won’t know how far she has spread until they go in because Miss Mabel is notorious for being stealthy in the small intestine.  The bigger issue is what to do with Miss Mabel after most of her has been removed.  How do they get her microscopic minions that are unresponsive the latest and greatest medicine?  That is the question that keeps me up at night.  The experts don’t know yet.  However, after they get the complete genetic code of Miss Mabel they may have some more ideas.  I can hope.  I must hope.  I have too much to live for…Ruth, Grace, William, Sam and Andrew, my children.

Here is a link from the Washington Post that explains what happened when I failed Keytruda. 

https://www.washingtonpost.com/news/to-your-health/wp/2016/07/13/here-are-some-ways-cancer-can-thwart-the-new-immunotherapy-drugs/?wpisrc=nl_daily202&wpmm=1

Me at Mayo getting treatment with my support group

Disney Cruise in Alaska

Canada

Me, my mom and my sisters at Teddy's funeral

Teddy's Funeral

My Garden

My succulent obsession

Damsel in Distress

 I am getting ready for a day of tests at the Mayo Clinic, spring has come and green is breaking through the gray of winter.  I am confident they will show the cancer is shrinking, if not gone.  My last trip up here to Mayo in the end of February was not as positive, despite my positive energy at the time. 

Grace and I left too late in the day and it was dark as we made our way through the small Iowa and Minnesota farming towns. The occasional neon sign blinking "BAR" with a few pick up trucks parked outside dotted the roadside. The A&W was closed down for the winter, waiting for spring to serve its burgers, fries, and of course, root beer.  The wind was fiercely blowing snow on the road, in a battle to cover it before the cars driving over it would scatter it again. The wind was winning, causing several long patches of icey snow covered roadway. 

We finally got to the hotel and I was tense from the dangerous driving. I had used my best lawyering skills to convince Bill that I was feeling well enough to go to the Mayo Clinic by myself. I was only going for a few scans and my Keytruda treatment.  My fatigue and nausea had lessened and I really wasn't feeling that badly.  I WAS GOING TO DO IT MYSELF.  After months and months of people helping me I wanted to feel some independendence, some freedom, some control over my situation. 

I was excited to have Grace as my traveling companion. She was doing a school project and came with me to do some investigative reporting. She went to the Mayo musuem, talked to the doctors, and collected pamphlets to help her with her project.  She also got her nails done.  While she was exploring the workings of Mayo, Mayo explored the working of me. 

We were here three days. On the last day I really wasn't feeling well, but I didn't want to tell anyone and admit defeat.  As we got ready to leave Rochester, stopped to get Grace some food before we headed back through the Midwest farmland.  I quickly took some more anti nausea medicine hoping it would make me feel better.  We decided on Noodles and I ordered chicken noodle soup, after having been on the Mayo diet all day, which means fasting for tests, my stomach was empty and I didn't feel like anything heavy. 

Before my food got delivered, someone started spinning the whole restaurant around. The people were all moving and things were going out of focus. My stomach was in revolt. I walked as fast as I could to the bathroom, feeling like I was running inside a bouncy house, Grace wide-eyed watching me. 

I barely made it to the toilet before I threw up. I was in the handicap stall, door swinging open behind me.  After my stomach stopped protesting, I layed in front of the toilet, the cold tile floor felt good.  I had the urge to put my cheek against the floor, wanting the floor to ground me, and cause my head to stop spinning.  Although, the fact that I was in a public bathroom, on the floor, right by the toilet, tipped the scale for me to endure the spinning a bit more. 

Slowly my head came to stop, my face like ash, and I walked out to Grace talking on the phone. She called Bill. She sounded the SOS. I was a damsel in distress and I needed saving. One of our friends was driving Bill to come and rescue me and drive us home. I was defeated. I was exhausted. I was so sick. 

We went out to the car and I rested. With my equilibrium restored, stomach still churning, I put the car in reverse and started going towards my knight driving a Honda Odessey.  

I sit here now, realizing my quest for independence from cancer was foolishness. My life is forever changed. I have lost some of what was and frankly, I still fight the thought that I have cancer, not accepting it, pleading for me to wake up from this on going nightmare.  

Although it is a nightmare through which I have grown, changed and obtained knowledge. I appreciate the curious  Robin hopping around my flower bed with her head cocked to one side.  I enjoy the motherly service of cleaning Cheeto stained fingers. I am grateful for moments when we are all in my bed with the kids debating whose night it is to say family prayers.  I cherish the pre-dawn snuggle fest with my boys as they drink a sippycup full of milk. I have gratitude that I can see the wonder of tulips pushing their heads through not long ago frozen ground.    I am living life with cancer and it is mostly good. So, today with all my scans I am optimistic that a part of this nightmare will come to an end.  

Diapers and Depends

Life can be brutal, dealing us challenges like cards are dealt in Las Vegas, fast and furious.   The challenges of death, divorce, disease and of course, potty training your child, can almost destroy a person.  I have had the opportunity to increase the depth of my character five times, potty training my five very different children.  

With the first two I got a false sense of my parenting superiority.  “It is easy, you make a chart and you give your precious child an M &M each time they are successful,”  I preached on the playground to other mothers.  I wonder what they were doing wrong?

After my next two children, I had great compassion for parents who duct taped their monsters to the toilet.  “You are not getting off until you go potty in the toilet and not on the floor!”   At one point, I got so angry my poor son huddled in the corner with a look of terror, tears streaming down his cheeks, speechless, with me holding up another pair of soaked underwear and fire coming out of my eyes.  Not my best parenting moment.

So, with the last child in diapers, knowing that he was ready to graduate to the world of underwear, I knew I needed to embark on this last potty training expedition.  However, this time there was a kink, I had cancer.  I was really sick.  See, that is the problem with cancer, your life stops, barely moving,  consumed by survival and doctor visits, but the world around you moves on.  Your son progresses, he is ready to move from diapers to underwear, and you digress from underwear to diapers, literally.  

One of the unfortunate side effects of my unique situation is that I suffer from incontinence, which is just a really fancy word for saying that I pee my pants.   It isn’t constant, but goes in fits and spurts.  I was standing at the kitchen counter, peeling carrots, when suddenly…yup.  I rolled my eyes, and slowly walked upstairs to change my clothes.   I was sitting in the car, “Oh, no, oh, no, where is a napkin???”  I was laying in bed, not again, time to wash the sheets.  Every time I coughed, done.  I didn’t want to wear a diaper, I had my pride, I am only 41 after all!  After too many accidents and loads of laundry, I succumbed, I wore a diaper.  (Good thing Bill was infinitely patient and never had fire coming out of his eyes, otherwise I would have been in the corner crying too.)  

Now, I feel in case any of you out there need to wear adult diapers, I should write a review of the different types, you know, a consumer reports type thingy.  One of the reasons I didn’t want to wear a diaper is because I was convinced I would smell like a poorly run nursing home, like stale urine stained sheets.  Additionally, who wants an diaper line showing through their pants? Little did I know that technological advances have also hit the adult diaper world.  Bill bought me several different kinds and I learned you get what you pay for, spend the money folks, spend the money.  The best kind whisks away moisture, neutralizes the PH, absorbs all odors and can barely be seen through even yoga pants.  Apple got nothin’ on the incontinence diaper industry. 

So, one morning I was feeling a bit better and ambitious and decided I was home all day anyway, I might as well start Andrew on his diaper free path.  I was laying in bed and Andrew bounced in.  I looked at him and declared with a sunny voice,  “Andrew you are getting so big!  You are such a big boy!  Let’s get some underwear and put them on!”   He responded, “NO! I don’t want to.  I wear diapers.”  I was surprised by his response.  He is almost as big as Sam and thinks he is bigger, so why wouldn’t he want to wear underwear like his brother?  “Andrew, why don’t you want to wear undies?”  He walked over to my bed, getting close to me, looked at me with his big brown eyes and said, “Mom, I want to be just like you.”  

It took me a minute to understand what he was saying.  He must have sensed my confusion.  He pushed back my covers and pointed to my diaper, while also showing me his diaper and said, “See!  Same, same!  Same, same!”  Tears welled in my eyes.  I am not sure why, but they did.  So I dropped it, for the next month we made it a badge of honor, we were the same,  we both wore diapers.  Although, he asked why mine had a purple bow on the front and his didn’t.  I asked him right back, why did he get to have Elmo on his diaper and mine didn’t.

In February I had a good streak and graduated myself back up to underwear.  I thought Andrew might want to do the same.  I showed him that I wore underwear now.  Did he want to wear underwear too?  He agreed.  We went to the store, bought him some underwear and got him Star Wars toy as a reward for when he filled out his potty chart.  I am happy to report that Andrew hasn’t had even one accident; he decided and he was done.  I, unfortunately, have not done as well as my three year-old.  Maybe I need to print myself a potty-chart. 

My Pet Wolves

Bill and I sat on a small couch in the oncology exam room.  I anxiously refreshed my Mayo Clinic app on my phone while waiting for my oncologist.  The Mayo app has an amazing feature where I can see all my medical notes, my radiology reports, and my blood work among other things in real time. I had gotten my blood drawn just minutes before and I was anxious to see my iron levels; my hemoglobin is always low, but my doctor is more concerned with my ferritin levels.  I did NOT want to get another IV, another infusion of iron, and another bought with nausea.  So, I sat there pushing refresh, refresh, refresh, hoping I could will some positive blood results.  

When my blood work finally pulled up, my ferritin level met my doctor’s threshold, so no iron infusion for me today.  “Wheww!” I exhaled.  However, I noticed my white blood cell count was abnormally low, it had been low before, but not this low.  “Weird,” I thought, “I wonder what that means.”  

The customary knock my doctor made before entering brought my thoughts back to the exam room.   After we exchanged pleasantries my doctor asked how I was doing, he wanted to know if there were any changes, he wanted to know everything.  I started by telling him how good I was feeling compared to how I felt before, feeling well is all relative I have discovered.   Whatever they did my lung had made a world of difference in my overall feeling of well being.  I had an appetite again.  I had more energy than before.  However, in addition to the positives I also expressed the negatives.  I hate this part, I feel like I just whine to him.  I tell him of all my aches and pains, weird unrelated symptoms, like random stars thrown into the sky, and he takes them, explains how they fit together forming a cohesive picture, connecting them into my own cancer constellation. 

“Well, I feel like I have pain and pressure behind my ears, like an ear infection, but I don’t have a fever.  The throbbing is always there.”

“I couldn’t swallow last week because one side of my throat had a large lump in it and I couldn’t eat anything but liquids.  It was gone the next morning.”

“The other side of my neck had a big lump, but then it just disappeared.”

“Every morning when I wake up my hands are painful, stiff and swollen.  It goes away during the morning, but I have a hard time opening a jug of milk.”

“My bowels are a mess.”

“My cough is mostly gone, but my lungs hurt and sometimes I have a hard time breathing.”

“I am nauseas.” 

“Some days I have lots energy, other days I can hardly get out of bed.”

And so the list goes on, with me talking, him asking follow up questions and taking detailed notes. I finished my litany of ailments, he looked up at me and said, “Well, you have wolves as pets. The wolves are attacking the cancer, but they are also attacking you.  We can’t give you the Keytruda today.”  I was confused.  What did he mean they couldn’t give me the Keytruda?  I needed the Keytruda.  The Keytruda was helping my body fight the cancer. 

He went on to explain:  there are unacceptable toxicity levels at which point they can’t administer the drug, I was at that point.  It didn’t mean I couldn’t go back onto the drug, they just needed my immune system to “cool down.”  He explained that we have several different types of white blood cells.  My t-cells (the wolves) had turned on me, they were destroying my neutrophils (the infection fighting white blood cell) faster than my body could make them, making my counts extremely low. I wasn’t there yet, but he couldn’t let me get to the point where I would die from the common cold or more probably the bacteria that lived in my own mouth or gut.  My own body was also attacking my joints and my glands, which explained the weird painful lumps and bumps on my body.  

I think he could see the panic on my face when he told me I couldn’t have Keytruda and he launched into an explanation of chemical half-lives, reminding me of my AP chemistry days.   Some of the medicine would stay in my body because of the long half-life of Keytruda.  Additionally, I could try again next week.  If my white blood cell count would go up, he would administer the drug.

As Bill and I drove home from Mayo, we discussed my pet wolves.  I may recover next week, but what about the week after,  what is my long term hope of staying on this life-saving and life-destroying drug? How long can I live with wolves as pets? 

Exactly seven days later, I nervously showed up to get my blood taken at my local doctor’s office.  It seemed silly to drive the four and a half hours just to get my blood taken.  I worked out with my oncologist, I would get my blood taken first thing in the morning, if my white cell count was up, I would get in the car and head to Rochester.  Unfortunately the wolves still devouring me and my white blood cell count was still low. 

Another seven days later, we found a local oncologist to administer the Keytruda in the chance that my blood work recovered.  As she drew my blood, I felt like my blood work would be up, the other side effects had lessened, so I thought the wolves might be losing their grip.  Indeed, my white blood cells made the threshold by one point.  Despite them never having administered Keytruda before making it a bit more tricky, I did get my infusion.  It is such a confusing feeling watching a clear seemingly harmless liquid flow into your veins, grateful that it creates the wolves that devour the cancer, but terrified because those same wolves devour you.  

Mayo visit January 2016...

“Ms. Davidson?”  anxiously questioned the nurse. “Ms. Davidson, can you hear me?  Allyson, can you hear me? Squeeze my hand if you can hear me.”

As I was coming out from anesthesia from a bronchoscopy I could hear what was going on around me, but I wasn’t really there,  my mind was still foggy and I couldn’t communicate.  I was just ordered to squeeze someone’s hand, I could feel her hand on mine, but I couldn’t squeeze.  I squinted my eyes and saw that I was surrounded by a circle of medical personnel, some attending to me, some just gawking.  What was going on?  What was wrong with me?  I could feel some sort of mask on my face and I had a chemical taste in my mouth, but what was happening?  Then an involuntary force hit me, I started coughing violently, flopping my body in a contorted heap on the table.  I couldn’t stop coughing and coughing, a deep, hurtful  but unproductive cough.  I went through several coughing attacks, with the doctor ordering them to put two different medicines through the mask strapped to my face.   In one of the lulls between the attacks I started to feel different, like a heavy weight was placed on my chest.  I began to feel the effects of my body being denied oxygen.   I was drowning in a waterless pool, not being able to outwardly scream, feeling helpless, with extreme panic assaulting my mind.   Suddenly I heard a voice declare, “She’s not breathing!”  

The next minutes, not really sure how long, were filled with a series of medical events, with me in and out of consciousness.  Mask ripped off.  Injection in my IV.   Head thrust back.  Limp body.  New device on my face.  Manual breathing.  Feeling the benefits of oxygen.  Lungs working.  Lungs failing.  Drowning again.  Needle into my arm.   Feel air in my lungs.  Propped up, stiff board behind my back, mobile x-ray.   Lungs working.  Getting air.   Drowning again.  Lungs failing.  Body shaking.  Too many voices for me to make out what was going on.  Plastic shoved in my mouth, feel something cold going down my throat.  Machine attached to my face.  Getting air.  No more drowning.  Intensive Care Unite (ICU) here I come.  

I was conscious when I got to ICU and when the reality of what had happened hit me, tears started to trickle from my closed eyes.  The night before I had PROMISED a very upset Andrew that I would be home to put him to bed.  How could I explain to my three-year old why I couldn’t keep that promise?  Sorry, sweetie, I almost died so I can’t sing you songs tonight?  My heart broke and sadness momentarily overtook me.  I HATED cancer.  The attending nurse saw the tears and gently tried to wipe my face since my body was attached to all sorts of machines.   I was embarrassed, angry, sad, scared, relieved and yet numb all at the same time.  I just wanted to melt away into the bed.   When Bill arrived in ICU, my tears kept coming, still unable to talk.  Despite all the fear, anger and confusion, I also felt immense gratitude.  I recognized that I was lucky, real lucky.  I was alive.  There are so many that suffer in this world with cancer that don’t have access to medical resources or support from family and friends.  I have been to many third world countries where people suffer, with no options at all, suffering with no hope of a future.   I am blessed.  I have my belief in God, a loving God, supporting me through these challenges.  I feel His love and concern.  I felt His love through the love and kindness bestowed upon me and my family from others.

Furthermore, despite the ICU setback, just the day before I had received great news!  One brain tumor, gone.  The other brain tumor significantly smaller.  Lung tumor, shrinking.  Tumors in my intestines, also shrinking.  The combo of radiation and drugs seem to be working their magic!

Unfortunately, the scans also showed I have a few new “hot spots.”  One of those was in my lung, which is why one reason I had the bronchoscopy.  Biopsy for came back negative for Melanoma!   My lung is still partially collapsed and pneumonitis is my constant companion, but I’ll take it over Melanoma.  I go back to Mayo next week to check out my other hotspot in my pelvis, hoping that my new trend of a negative biopsy continues.  Feeling good, feeling grateful, so glad I am home so I can tuck Andrew and all my kids in bed tonight.  

(FYI:  I recovered quickly in ICU.  The doctors explained that I experienced a rare event when trauma to the lungs combined with anesthesia causes your lungs and voice box to seize, making it so you can't breathe.  My lungs decided they had had too much trauma, they were done. Modern medicine helped them decide they needed to keep going.  When I talked to my mom and told her what happened she was obviously upset.  I told her not to worry, I wasn't that close to dying.  I didn't see any bright lights, no lighted tunnels, my father wasn't standing there with outstretched arms.  Anyway, my grandfather, who was quite a character would probably have yelled at me to, "get the #!@#!  back to earth!"  So, I was safe, not even close.  Also, I am not going to post any pics of me in ICU, I have too much pride.)