September 27, 2018

     I wanted to give you an update on the latest. It has been a very busy week. I was picked up by my friend, Valerie at seven o'clock Monday morning. I hate fighting the morning commuter traffic but knew that we didn't have much choice. We needed to get to get to Walther, Mass. for my brain scan which was scheduled for 9:30. I was happy to know that I would not be drinking that dreadful contrast. As usual, they had a hard time putting in an i.v. My veins are pretty well shot in my right hand and arm. They cant use my left arm because of the lymph nodes that had been removed after my surgery eight years ago. After trying four times, they finally got in my line. The scan took about a half hour. I hate being closed into a machine. I am somewhat claustrophobic. I just close my eyes tight and go to my happy place. Scan completed. Now off to Boston for a pet scan and cat scan of my whole body.

     We made pretty good time getting to Mass. General. They even took me a little early. It didn't really matter. Same problem. My veins. I lost my spot because of this. They brought me to a i.v. specialist that had no problem putting in my line. I had to wait a half hour to get my room back. Oh no. Here comes those two bottles of contrast that I needed to drink. I could only get one and a half bottles down; It took about 45 minutes for my full body scan. Very hard, as I had to stay very still. At that point, I ran out of happy places to think of and wished I had taken a pill to help me relax. Mission accomplished. My friend and I  could finally head back to New Hampshire. What a long and tiring day.

  Tuesday was going to be a quiet day for me.. Guess not. I needed to be at Mass. General on Wednesday for eight o'clock. I was scheduled to see my doctor for my results of my scans and to receive another transfusion. My sister and I finally decided that we probably should get as close to Boston as we could the night before. We called every motel and hotel possible. Everything seemed to be booked and very expensive. I found a place in Framingham. When we arrived there we found that there was a mall nearby. Spent most of the evening shopping. Up the next day and on the road at six for Mass. General. Glad we did. The traffic was terrible.

    I was so nervous!!!!! My doctor came into my room and gave me a big smile. Brain scan was good. Will have another one in three months. Body scan was also fine but tumor in my lung still there and a little bigger. What to do!!!! He will get together with his team and also my lung specialist to make a few decisions. My doctor feel that it may be best to remove this tumor or do we go for another clinical trial.  We know that it is melanoma and needs to be taken care of.

     So...It's another waiting game. My doctor will call me within the next few days and let me know what they feel should be done. I am so relieved knowing that my other scans came back fine.

     Keep praying for me my friends!  I feel that I am one lucky lady and know that Boston is certainly

the place where I need to be.

     

September, 2017

My sister Becky came down once again to drive me to Boston for my treatment. I had an appointment with my adrenal specialist the next day so we decided to stay the night. I called one of the motels to make reservations and was shocked at what I was asked to pay for a one night stay.

2 king size bed suite $420.00
2 queen size beds $300.00 and something.

The receptionist said they had no other rooms available because of hurricane Florence. I told her that I am a patient at Mass. General and was wondering if she knew of any other place that I could stay at. She hesitated for about 30 seconds and said "Oh....we have just one room left. One king size bed for $110.00. Can you believe that!!!! I said book it!!!!

It was a long five hour day. My blood work came back fine so my infusion was given. We had parked my car in the parking  garage and were planning to take the shuttle to our motel room. My sister felt comfortable driving to the motel and we were there within 15 minutes. We regrouped and decided to head to the Ninety Nine for an appetizer . It was within walking distance.

We enjoyed our fried food (Shh!!) and planned on going back to our motel room to settle in for the night and relax. We noticed a shopping mall in the distance. Oh no! The Christmas Tree Shop!!!!  We didn't like the area that we were located in but thought we could get back from shopping before dark.by dark. That was not the case. Six shopping bags later, we realized that we had shopped much to long  and would be walking back in the dark. Next time I will bring a flash light.  Kinda scary!!!

My appointment was at 9:20 the next day for my testing on my adrenal gland. We left the parking lot (after checking out of our motel) at 7:30. We got lost and the traffic was terrible. We just made it to my appointment. The one hour test was done. Waited over an hour to see the doctor then headed home. I LOVE NEW HAMPSHIRE! 

Got a call today with the results about my adrenal gland. Not good news. It is not working. Will continue to take my prednisone and will have the test taken again in another six months.

Go back to Boston next Monday for a cat scan and pet scan. It will be a full body scan and they will also do my brain. Will have to go back to Boston that Wednesday to get the results. Just wish I could just have a couple of days to relax and not worry. It is the unknown that scares me!

I will get back to you all and let you know the results. If you don't mind me asking.....could you say a little prayer for me.😊

September 12, 2018

Have had a hard time with my blog the last two or three weeks. Finally called my friend to come help me figure out what I was doing wrong. She came over and had it fixed within two minutes. Thank you Christa!!!!

So much has happened! Have been going to Boston every other week to to continue with my infusions. Also, saw a lung specialist to talk about continuing with my treatments as my tumor hasn't really shrunk much in size. Had three different breathing tests to see if I would qualify for lung surgery. I passed.

What I need now is a pet scan to see if my melanoma has returned to my brain or any other parts of my body. This will determine on whether to continue with the clinical trial, go with radiation (radiation would only take 70% of my tumor or  I could have the lung surgery and get rid of the tumor altogether. Taking out two thirds of my upper left lung is kinda scary.

Back to Boston tomorrow and will have to spend the night as I have an appointment with my endocrinologist on Friday to determine how bad my adrenal glad is.  My sister Becky will drive me down and spend the two days with me. I continue to take four prednisone pills a day to help cortisol a hormone naturally made by my adrenal gland. Will go through a series of tests to see how bad my adrenal gland is. 

Cancer certainly has been a battle for me but I continue to remain strong and fight back. I have so much to live for....

Will give you an update at the beginning of next week... So glad I have figured out my computer.