January 29,2019

Where has the time gone. I guess I have been in kind of a slump after my lung surgery.

I made it through surgery but it has taken a good two months or more to heal. I continue to go to Boston every other week for my infusions. I generally take the bus to Boston and then hop on the "T" to get to Mass. General. It is a long day but this clinical trial is working for me so far and I hate to be a burden and ask my friends to take me.

Last week I was going down to Boston with my sister, Becky. We had booked a couple of nights at the Beacon House. The day before her husbands threw out his back and could not be left alone.  My husband, Steve stepped up to the plate and off we went to Boston for scans and another infusion. It was that cold snap and the wind shield factor was way  below zero. We got off the 'T' one stop before Mass. General and took off by foot. We bought backpacks as we knew we would not have a car. We weighted them before we left and they both weighted nearly twelve pounds a piece. I left my gloves in our truck at the bus station. I tried to use my g.p.s. on my cell phone to get to our destination but it was so cold that my cell phone died. We would scurry into any place that looked open and try and get warm. The people who were out walking (very few that day) did give us directions.. Boy, Boston has lots of hilly streets. 

We finally arrived at the Beacon House and checked in. We were exhausted. We took off our heave backpacks and just looked at each other.....Never again! Many of you may be thinking on why we didn't get a taxi!  None in sight on those side streets and we had no idea on who to call.

So cold! Thought we would never warm up! Wish my mom was there to kiss my cold cheeks!

We had brought a few snacks, some fruit and cold drinks. ( wish we had some hot coco.) Why didn't we pack something for our evening meal!

Knock! Knock! Who is knocking at our door? SECURITY!!!! "Excuse me Mame..You left your wallet down at the desk.." This was the beginning to a stressful weekend. STRIKE # 1.

WE were hungry and needed food. We found a store on our street but nothing really to eat. I knew that I had to stop eating after 3 am because of the scans that I was going to have the next day....I WANTED SOME REAL FOOD!!!!!
So!!!! WE decided to venture down another hill to find a restaurant close by. I turned around to talk to Steve and he wasn't there... He slipped on the ice and was flat on the ground. I helped him up and he rubbed the gravel off the palm of his hands and continued on without a word.  STRIKE# 2!!!!!

WE found a restaurant at the bottom of the hill called Cobblestone Cafe. Nice place...Warm, nice atmosphere and great food. I asked the waitress how to get to Mass General in the morning so I would not be last for my scans.


I did not sleep well that night. I MUST remember to bring something to help me relax to get through the brain MRI and cat scan. We made it to Mass. General on time. We only had to ask three people if we were going the right way.😊  I am not going to get into my morning as it was very stressful to me and I was angry that I had forgot my pill to help me relax during my dreadful scans.... STRIKE #3!!!

WE made it back to the Beacon House. I was exhausted.. Mentally and physically! We slept four hours or more. It was time for dinner and there was no way I was going down or up another hill. Steve walked to convenience store for me and got some blue cheese dressing to go with my leftover chicken wings from the night before. Only cost $2.99 cents... I WANT TO GO HOME!!!!!  Tossed and turned all night worried about the results of my scans. We packed our things up early that morning as we had to be at Mass. General and we had some walking to do....Steve said that his glasses seemed foggy and that maybe he should make an appointment to get his eyes examined. I looked down at the carpet and saw his lens to his glasses!!!!! Could not tighten the screw as we did not have the little eye kit to do so!!!! STRIKE # 4

We made it once again to Mass. General and I waited in the waiting room to have my vitals and to step on that dreadful scale to have my weight to be documented. A lovely lady went in before me and I watched as her daughter waited for her to come out of the examining room. The mother looked at her daughter and said.. .Darn! I knew I shouldn't have had that donut this morning. I wish I could have sat and visited with her. Just a normal conversation and maybe not about our not about our health issues.

 I just wish I could have some normalcy back into my life once again. To be the happy person that I once was and not worry about my health issues.  To be able to hop into my car, take off  and not tell anyone where I am going. I am going back to the eye doctor next week to see if there is anything they can do to help with the loss of my peripheral vision.  Keeping my fingers crossed.

ANYWAY... my scans came back clean once again, I had my infusion and we made it to South Station to catch the bus back to Concord... 
ARE YOU READY FOR 
STRIKE #5...

We got back to our truck and NO KEYS!!!!! Had to call someone to pick us up and bring us home.  Had to have another key made! $100.00. Why so expensive? The key has a chip in it. 


We got a call yesterday from Boston Mass. It was the restaurant where we had dinner. They found our keys. We had our last name on the key chain. I had a lovely chat with the waitress that evening and she must have remembered us.

Stay warm my friends!  Will try to do better keeping up with my blog! Thanks for your much needed support. So glad that I chose to go to Mass. General for my clinical trial. I have grown to become very fond of the doctor's and staff that have helped me! They are are the best!

            Let's hope it is a good year for us all!