THE BEST MEDICINE

No one knows how one will react when faced with a diagnosis of cancer.  You read the literature, you talk to people but everyone is different.   The caregiver and family members deal with different emotions and challenges but it is nothing compared to what the person with cancer feels.  Such a huge range of emotions that change from day to day and from hour to hour.   From what I've been told, you want to have the energy to fight and to have a positive mental attitude but you're so fatigued and worn down that sometimes all your energy focus is just on trying to eat or making it to the bathroom. 

Watching your loved one struggle daily dealing with cancer is a hard burden to bare.  The pit in your stomach is your new best friend that follows you everywhere.  You learn to try to focus on the small victories and the good days and today was one of those.  

A former co-worker of Bob's (as he is known in business circles) contacted me to arrange a lunch to get together and visit.  I thought it was a great idea for him to get out and I'm sure he was excited to talk to people other than his Bossy Betty wife.  :)  Richard said he was going to gather a few of their former coworkers to come as well.  We got there and we were both overwhelmed with emotion, a few people, turned into about 21 people. WOW!  These were coworkers of his from over 16+ years ago (not sure exact #). Bobby was shocked that so many people would take the time out of their day to come see him and have lunch.  

Sorry for the bad lighting

Prior to everyone's arrival

He said it was so encouraging, heartwarming, and reaffirming to him.  They told old work stories, laughed, and caught up on each others lives.  I saw a change immediately in his demeanor. I really think he didn't realize the impact he has on people and how much people love him and respect him as a person.  I always new what a special person he is but my husband is so humble and doesn't realize his affect on others. It was such an amazing thing for him to see so many people from his past show their love and support. 

From the bottom of my heart I want to thank you Richard for arranging this outing and to the following people who showed up for Bob. 

Brian, Tung, Mark, Bob, Rafi, Cris, Roy, Ken, Jason, Mimi, Ali, Tracy, Grace, Raj, Joe, Eileen, Gabriel, Cindy, Gus and Manoj.   Also, thank you to those who sent their well wishes but couldn't make it.  

HOOK ME UP BEFORE YOU GO GO

"Don't leave me hanging on like a yo-yo"..... Well that is exactly what they did (kinda).   Tuesday we had our first treatment appointment.  We started with blood work, quick visit with the

Waiting for Treatment

doctor before going to the treatment center.    Bobby's parents joined us but only one person is allowed in during treatment so we took turns a bit. 

Because his sodium levels were critically low (due to the severe sweating/chills episodes)  he received some fluids along with a 2 hour chemo infusion of Oxaliplatin, the "loading dose" as they referred to it. 

Then the wonderful pharmacist came in and explained in amazing detail all the possible side effects of the chemo, like sensitivity to 

Port-a-Cath (Hook up location)

cold surfaces (never heard of that one).   Wow, she was great, and we wished she was the regular Dr. (no offense Dr. Chao) She was so detailed and articulate and gave us the how to, the what not, and if when's of our take home gift  "The Pump" or as I liked to call it "The Murse".   I offered to bedazzle it for him, but for some reason he declined. Hmmmph! 

The next phase of the chemo would be a 36 hour constant infusion pump that he would constantly wear like a purse (or yo-yo, see above reference).   It contained chemo called the "5-FU" or Flourouracil. Apparently there are over 300 different types of chemo with all different side effects,  per the pharmacist. 

Then WHAM! (see how I tied that in?) we were done. Treatment is every two weeks to give his body time to recover.  So far, his fever/chills stopped which is good.  He did get a massive case of the hiccups for several days which was not good for sleeping (for either of us).  We are hoping his energy levels perk up so he is not exhausted all the time,  but now we are moving on the right track. 

LET THE TREATMENT BEGIN

Finally the post that brings us up-to-date, whew!   Last Friday we met with Dr. Chao to find out if we qualified for any of the trials and to get an updated CT scan, EKG and blood work.    It was a busy day filled with small kindnesses and disappointing news.    We woke up hopeful, as we had been sitting around waiting and trying to battle this disease with broccoli, acai, pomegranates and sheer will.  We needed something to happen. 

While drinking the "cocktail" prior to the next CT scan (Bobby was bundled up in his usual layers of clothes that he can quickly shed when his body temperature drastically skews in the other direction) a woman who was there waiting for her husband came over to us and gave Bobby a blanket to keep. Being rookies to this scene, we had not packed sufficiently for our outing, and this small gesture really meant a lot to us.

We finally got up to meet with the doctor and to discuss next steps. I had emailed the doctor very concerned about how rapidly he seemed to be declining and that we couldn't wait any longer.  He showed us the new CT scan of his liver and compared it to the original from a month earlier and we were shocked to say the least. Both tumors in his liver had grown drastically and many more lesions had popped up.  He agreed we could no longer delay for the trial and we scheduled chemo for Tuesday (tomorrow).  

Unfortunately, we found out later in the day, that he did not have the PDL1 marker to go in to the immunotherapy trial.  We are looking forward to actively fighting this disease and keeping our eyes out for other trials.

YOU'RE FIRED!!

No, they didn't say that exactly,  it was more like "I don't think we should move forward" and "it will be too difficult for the kids".

(For those of you who don't know me,  I have been a School Librarian for the past 11 years.  I even have my Masters Degree in Library Science and Information Technology (yes, official nerd degree) and I was a teacher for several years in Texas prior to finding my true calling) :)

I was looking forward to going back to work (at a nameless private school in the valley) and had been working off and on (online) during the two weeks while we were in Texas, updating the cataloging, searching out overdue books, lesson planning and responding to parents' and teachers' emails.   I had only been at this school for two weeks prior to my having to fly out to Texas and was looking forward to getting back working with kids and getting this library in tip top shape (which it needed). I had kept them updated quite regularly on our status and they seemed to be very supportive the whole time and very concerned.

I wanted to focus on something positive and get my mind off things.  Bobby was still working as much as he could between periods of rest.  I let them know I was committed to making the library fantastic.  I love being a librarian and I love working around kids.  They just warm my heart and make me happy! :)

After our appt. with COH, I explained that I was looking forward to coming back, but was not sure how much time off I would need to be with Bobby once he started treatment.   I let them know how supportive his family was and how much they were willing to help out by taking him to appointments etc... Unfortunately, this lack of stability "would be too difficult for the students."

In the end,  since I couldn't commit to a set schedule, THEY THOUGHT it would help me more (of course they didn't ask me what would help me most) to receive unemployment  (which is not even a 1/5 of my salary) and take care of my husband.  Do you think they would have said that to a man? hmmm

I want to take care of Bobby and be there for him, I love him with all my heart.  My husband has cancer and it is horrific. We are fortunate to have family and friends around to help be there for him as well.  I also know that I have to nurture my mental health as well in order to be the best partner/caretaker for him and working is part of that process for me.  This is not a sprint, this is a marathon and life does not stop.  Bills still need to get paid and there are a TON more of them now!!  

TESTS, TESTS, AND MORE WAITING

The liver biopsy came back as inconclusive so on to more tests. We met with the gastroenterologist, Dr. Sampath, who performed an endoscopic ultrasound & biopsy, which confirmed it was officially gastric cardia cancer.  This means that it started at the top of the stomach near the cardia flap and had grown in to the esophagus. We then had a PET scan which confirmed that it had spread to several lymph nodes, the liver, and unfortunately to the lungs as well.  We flew home the next day with an appointment to meet with Dr. Joseph Chao  on September 22nd and to hopefully start treatment ASAP.

As you drive in to City of Hope (COH) it is hard not to be impressed, valet parking, a patient liaison walked us to our office and the facilities were top notch.  We had done our research and asked for recommendations.  Dr. Chao came up as one of the top doctors in the area who focused on targeted therapies.  He explained we had several options for treatment two of them depended on certain markers (HER2 & PDL1) being in the tumors and the third was basic chemotherapy.   He clarified that there was not a cure but best case scenario the treatments will shrink or maintain the cancer and he will be able to live on with this like any chronic health problem.  Finally some good news.   He explained that the soonest chemo would start would be two weeks and if we wanted to shoot for the immunotherapy trial it would be closer to three weeks as they had to send a tissue sample to Scotland to search for the marker.   We offered to take it to Scotland, personally, in order to get things started faster but shockingly he declined.  

Needless to say 2-3 weeks felt like an eternity and neither of us are very patient, we left a bit deflated as we thought we would start treatment the next day, but insurance and tests were holding us up.  We scheduled an appointment for the next week to have a Port-a-Cath inserted into his chest to make receiving chemo and blood tests easier and began the next agonizing wait. 

Rocking the pants at PET Scan appt. 9/19/16

VISITING DE NIAL RIVER

Kill cancer with green stuff

Ok,  we didn't really go in to denial as much as we wanted to but we did visit a river.  Well at least the San Antonio Riverwalk, does that count?  After the liver biopsy we decided to take a weekend away to escape reality and pretend like we were a carefree normal couple.   We were dealing with so many emotions, what if questions, as well as complete and utter shock.  We just kept hoping we would wake up from this nightmare and all would be well and Bobby would be back to giving me nightly foot rubs and back tickles (yes he did this, don't hate me ladies) instead of the sweating and chills that plagued him all night long.    So we did the normal touristy things,  dinner on the riverwalk,  the boat tour, and visiting the Alamo.   All in all it was a fantastic weekend with only a few minor breakdowns.  

THE HORRIFIC WAITING "GAME"

                   

Right Before Liver Biopsy Sept. 2016

I called him on the way home from work and he told me the horrible news.  I can't even describe the shock and horror I felt, as well as the guilt that I was not with my husband in Texas when he received this life shattering news.    I called my supervisor immediately (after I called my Aunt) and explained the situation, albeit hysterically, they encouraged me to go be with my husband and not to worry about anything (except as I later found out MY fricking JOB!).   I flew out the next morning.  I balled hysterically the entire time on the airplane but sucked it up when I landed to put on a brave face for my brave man.  The joy at seeing him as I came down the escalator was palpable and I hugged him forever.  We had an appt. with the oncologist, Dr. Bala, that same day.   She explained that first and foremost we needed to figure out what kind of cancer he had and where it had spread.   We knew that he had multiple lesions on the right and left side of his liver, as well as lymph nodes and other suspicious areas.  In order to treat the cancer you have to know where it originated.  We also discussed our desire to get treatment in California near family.  She was very supportive and explained in order to transfer us to City of Hope we had to have a full diagnosis, at this point all we knew was that it was definitely Stage IV.  She set up a liver biopsy for the next week.