First of all, if you only want to know about the doc appts skip to the bottom and you will find that info. I will increase the print size so you can find it more easily. However whoever would like to hear about the "whole day" read on. Yet another miracle in my opinion!
Olivia was sick today..a deep croupy cough...and Natalie was sneezing so I opted to keep them both home to rest and hopefully get better fast! Daddy will be home any day.
My friend Emily brought me to the train station bright and early this morning. I was going to drive and leave my car but decided last night that it was best if I didn't have to deal with the parking ...or shall I say the possible "lack of parking" at Wassaic. It was also nice to have company on the way over. We arrived in plenty of time..no stress. All is well....then...
I boarded the train. I called my mom and the girls quickly to say I was on the train. Then I called the school to say the girls would not be in school today.....at this point it's about 8:20.....while I was finishing up on the phone with the school Bob was calling in so I immediately answered it. Here's the email I sent Emily, Anne and Ginny ......
"Crying on train.
I just told a woman off. Bob called me almost as soon as I got on train. I was having trouble hearing him ...I was near the door of the train where it is a bit louder....sometimes it's hard for him to hear me....while Bob is sharing with me his happiness over having his last radiation treatment today and he was going over the plan for when I arrive ....some woman comes over and rudely tells me my voice is carrying throughout the train and to enjoy my office!
I finished up with bob abruptly and went and gave her an earful...she didn't know what to say except she was sorry....many times...there were only about 6 people on the train and each one came over to me saying she was completely out of line. It's not as if I was carrying on a 20 minute conversation on the phone.... Well my flood gates are open and its pouring out...its probably a cry that I have needed to have but what a way to start it!!!!!
Yes I know I can be loud but I had reason this time! Trying to laugh. "
So that was the beginning. No tissues...didn't expect a waterfall...someone handed me a few wrinkled napkins...I just couldn't stop the tears. I was crying the whole first leg of the trip...I switched trains in Brewster.......A man came over, asked if I was OK and made conversation with me which helped "change the focus". He knew what he was doing. He completely changed my focus and my tears subsided. He told me all about his new adventure in Overeaters Anonymous...told me about his wife...how good he is feeling..... God bless him. He was very kind.
I arrived at Grand Central. I told Bob I would be there at 10:40 and I would go directly to Beth Israel so he wasn't late for his 11:00 appt with the Dr.Culliney. I walked out of Grand Central...called Bob and there was no answer. I stopped and waited in line for a taxi..it's quite organized outside Grand Central...there's a man there organizing who is "next". I was next in line when my phone rang.....it's Bob...he said he is IN Grand Central at the information booth.....he said to wait where I was and he'd come out. I waited...I let everyone go ahead of me.. Within moments I saw him walking toward me. Surprised that he was there I said "I thought I was meeting you at Beth Israel"...He said he sent me a TEXT to tell me of the change......FYI...I'm not real good at paying attention to texting coming or sending texts..........I didn't even see the text until later!.......we waited in line again ...we finally got a cab and he explained he had to go back to Hope Lodge to feed himself and take meds...He said he didn't know what time his appt with Dr. Culliney was ...he said no one told him.......I reminded him the "appt reminder phone call" came to our house and the appt was at 11:00. ......remember he's on pain meds so from what I see his thinking isn't really clear ...There was no way he was making that 11:00 appt...he went to work this morning to collect some things and erase a bunch of emails. He didn't bring his medicine and he said if he waits too long to take it that things get bad quickly. He had to go to Hope Lodge first.
He called Dr. Culliney's office (Medical Oncologist) to explain he missed the 11:00 appt.....they said the next available appt is Nov 2 .....after explaining that he didn't live in NYC and has to travel from MA the person still didn't budge..they said they are all booked and could not squeeze him in. He said he'd decide what to do and call back. I suggested calling the nurses..I didn't think it was a good idea that he leave NYC without having this necessary bloodwork to check levels.. They check bloodwork weekly.
...LUCKILY Nurse Daisy (Dr. Culliney's nurse) answered the phone...HIGHLY UNLIKELY that she answers..we always get voicemail.....Bob explained what happened...NO PROBLEM..come at 1:00....PERFECT.....the appt with Dr. Harrison ( Radiation Oncologist) is at 2:00..PERFECT TIMING...I even had time to eat some street food before appts begin .... I must say that food was was delicious! I was very hungry....Chicken Gyro. I ate in Union Square and we watched the people, squirrels and children busy in their day.
Dr. Culliney's Report: Medical Oncologist Blood work looks good...good cell counts and such...he is anemic but not enough to need a blood transfusion. He updated scripts....said DO NOT cut down on pain meds yet...Bob may feel worse for another week or so then will start to slowly improve.... REST REST REST...take medicine on time..REST ....feed 6-8 cans of food a day...lots of Gatorade...REST....SLEEP....will see him in 2 weeks.
So we finished with Dr. Culliney and his nurse Daisy then we were off to see Dr. Harrison.
Dr. Harrisons Report: Radiation Oncologist: Dr. Harrisons nurse Elyse STRESSED...rest, rest, rest, rest...sleep...take meds on time....6-8 cans a day..lots of gatorade....she updated more scripts...encouraged NOT going back to work until at least Jan. She said YES you could go back in Dec however YOU WILL prolong this process of healing. REST REST REST...do not talk on phone...email...
Dr. Harrison said he is confident the tumor responded well....he will know more info in 3 months when there is another scan...he will know then if it responded completely or mostly....his neck area has to calm down and rest after this intense protocol, then more decisions may be made. They may do radiation seed implant however this is not the time to decide any further treatment. He explained Bob may feel worse for a couple weeks..radiation and chemo are cumulative...after a week or two things will improve slowly....REST...REST...REST...EAT....Do not lose any weight... He said you made it through the treatments..horray!
So that was that. By this time Bob was EXHAUSTED. He could hardly keep his eyes open. We said Good Bye to everyone....he was quite popular with the staff!..all the nurses said they would really miss him...(:
At this point I realized I could get home to MA at a decent time so mom could leave early tomorrow. She has her work to do at her house. Bob encouraged me to go because he knew he would be sleeping the rest of the day. I hopped in a cab and off to Grand Central Station. Bob left for the subway to head back to Hope Lodge.
I arrived at Grand Central around 2:50 and I was calling everyone to see if I could get a ride from Wassaic. I wasn't having much luck finding people home. This is VERY short notice but I felt confident something would work out. I knew Emily would come but she probably wouldn't get there until 8ish...
I boarded the 3:45 train...WITH MY CUPCAKES FROM "CRUMBS"....the treat I'm bringing home...for ME and for the girls!!!!....I'm eating one now as I write this (:
So now I'm on the train...I quickly remembered cell phones do not come in UNDERGROUND! So after a bit we were in daylight again...I continued to call and send messages...no luck....though I did know Emily would come if all else didn't work out.
I chose a seat facing the majority of passengers. I looked at one passenger who looked SO familiar..he looked just like our neighbor and friend Bill.... After a few minutes...putting my glasses on and staring..trying to figure out if it was him...I decided to stand up and walk over...
It WAS Bill and Diana...they were on their way home from France. They were away for several weeks and here they are ON THE SAME DAY.....AT THE SAME TIME.....ON THE SAME TRAIN......IN THE SAME CAR! A FORTUNATE STROKE OF SERENDIPITY! Or I as I like to believe..one of life's little miracles! Their car just happened to be parked at Dover Plains and they have plenty of room for me and my cupcakes!!!!
So I'm home.. Thank you Bill and Diana. Thank you God!
Good night...time for bed.
Wow! What a day...Sounds like cautious good news though. Thinking about you!
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