The trip to Dylan's was interesting -- we missed the first flight (having worked at Alaska Air for 8 years, I was used to running in 1/2 an hour before a flight to catch it -- but not any more!) My good friend Nancy at Alaska had us all checked in and left the tickets hidden at the counter, but I didn't see them...so fortunately, she re-booked us on the next flight, connecting us to American Airlines and getting us there at the same time Dylan & Jenn expected us. We arrived safely -- but our luggage DID NOT. Thank goodness they give out those little diddy bags with toothpaste and stuff!
CANCER WARRIORS: You are probably much smarter than I was, but carry all of your medical records, including your DVD's, in your carry-on bag just in case. Each time when you leave the hospital or clinic, go to the records department and order a copy of all of your records, including a copy of the scans. They will also forward the records to the physician or hospital you are going to, but it is ALWAYS a good idea to get a copy to carry with you, which came in handy at least one time so far for me on this journey!
We left the next afternoon (after our bags were delivered) for Houston -- a 5 hour trip -- headed for MD Anderson Cancer Center. Fortunately, Dylan was able to take some time off and "chauffeured" us -- which was a good thing cause the speed limits constantly change in Texas -- up to 75 miles an hour which meant some people were driving 90! We had reservations at the Econolodge in Houston (which we found on the Joes House website on the MD Anderson site). I have to admit -- it wasn't too fancy, but Dylan had his own little room off of the main bedroom, and Joe & I were roommates.....along with an inch and half (or better) gray cricket! Who remembers Jimminy Cricket from Walt Disney? Singing ENCYCLOPEDIA - E-N-C-Y-C-L-O-P-E-D-I-A! Those were the days -- and I swear I thought that little critter was gonna start singing. That was enough for Dylan -- we moved to the Holiday Inn Express the next day before my appointment LOL!
MD Anderson Cancer Center is absolutely AMAZING! They have several high rise buildings all clustered together, with almost 20,000 employees. Everything ran real smoothly, like a well-oiled machine...they had my drug list correct (TRIOS had someone else's though we corrected it when we started going over them) and EVERYONE - from the valet park people to the doormen to the receptionists to the nurses to the doctors themselves -- were all sincerely caring about YOU. I genuinely felt like they cared about me and they hung on my every word and they were so gentle -- you could FEEL the love ooze out of them. It's almost difficult to describe. We did all of the intake info and finally got to meet Dr Milind Javle -- he said I have CHRONIC JAUNDICE and that is the first thing we will tackle. They admitted me immediately into the hospital and scheduled me for surgery the next day -- Jenn came to be with us later that night, so was there for the surgery as well. They put in a temporary (that is plastic versus metal, which is permanent) stent into my bile duct, which is the culprit that was affecting my coloring and my bathroom habits. The surgery went well enough, but I ended up getting pancreatitus - which was REALLY painful. I think I ended up staying at the hospital a total of 7 days. Dylan and Joe stayed at the hotel, which was a lot more restful than where I was. Once they got the bile under control, they were able to do another CT Scan and more blood tests. Dylan was sending out daily reports to family and close friends. They sent us home to Denton (where Dylan & Jenn live) for a few days so they could study my tests and come up with a game plan.
CANCER WARRIORS: There is literally NO WAY you are going to remember what each doctor is telling you -- from the dietitians to the anesthesiologists, to each specialty doctor you speak with. It is ALWAYS a good idea to record the doctors' conversations (iPhones are so cool aren't they?) and as in our case -- having ONE PERSON dedicated to relaying the updates and info to everyone else. Preferably this is NOT your spouse -- they will be too busy worrying about you and logistics, to send out info to everyone. I speak from experience -- we would not have been able to relay ANYTHING without Dylan taking the painstaking task of listening to each of the recordings, poring over my blood tests and other reports, and sending the information out as concisely and precisely as he did. AGAIN -- thank you Dylan O'Dell! Love you honey.....
We had a wonderful relaxing time at Dylan and Jenn's for the next several days, before we had to go back to Houston to get our results. The weather was warm and we hung out at their pool for hours -- Dylan would come home and barbecue and I laid in the sun -- turning a toasty tan instead of the yellow I had been. When it came time to go back, both of them had to work, so Joe and I did the trek alone. BE FOREWARNED. Texas has a LOT of toll roads -- which are very confusing as to WHICH ones they are - not to mention not all of them take paper money or cards and none of them take pennies! We weren't at all prepared, so went thru all of Dylan's change in the cupholder -- not to mention all of ours til we got to the point we just drove - getting our pictures snapped all the way! I think we ended up owing him over $11 after it was all said and done.....
We went to see Dr Javle, and conferenced in Dylan by phone since he couldn't get away from work. We are going to do chemotherapy and there doesn't seem to be any trial protocols that would fit my particular cancer. Joe was just about to ask the prognosis, when Dylan piped up and asked. How long will she live? The doctor turned to me and asked if I want to go there? Yes-- we need to know. Normally we don't see this cancer except in older patients - in their 70's and 80's. Most people live about 1 year, but with chemotherapy -- they could go for 2 years. You're young and strong (and I added sexy, to try to lighten things up - he smiled -- in agreement I decided) so I believe 2-4 years with chemotherapy. We sat there -- in shock and disbelief. Joe volunteered, "Well with my job, I can do it from anywhere -- we can get a small apartment -- we want to do all that we can." The doctor just said at this time, it's all about comfort and quality of life. He suggested we go home and enjoy the holidays and do what we normally do and live life as usual. So Joe asked -- "so what you are saying, short of a cure for cancer or a miracle -- you're telling me my wife is going to die?" (I was screaming/crying inside - NO!! But I sat there, stone still.) "Yes - that is right. She will NOT survive this." But -- at least my numbers improved as far as my bilirubins and blood counts... I turned to Joe and said -- "I want to go home now. Not to Dylan's -- I want to go HOME."
The ride home was really quiet....both lost in our own thoughts. I thought about not seeing Abe and Karina getting married and having kids. And not seeing my grandkids get their first car or their first lost tooth for that matter, or their first prom, or get married and have babies. And Joe -- my Joe. All of our plans to move to Ecuador or Peru -- dashed to the ground. How can we possibly survive without each other? I felt so horribly bad about leaving him ALONE. And still we sat in silence, afraid to speak the unspeakable, still in shock -- too shocked to cry or anything. I called the airlines and made reservations to go home the next day. Dylan and Jenn met us at the door -- he sent out the updates -- but just about my blood tests. He left the telling of the prognosis to us....he and Jenn agreed we should go to Paris (something I had always wanted to do) and just get in our new motorhome and travel. Take a leave from work -- just have fun -- do your bucket lists! Except when you're commission only, you don't work -- you don't get paid. And we still have Karina and Abe both semi at home. So much to think about....all I wanted to do was to get HOME.
