June 26, 2018

Where has the time gone! I continue to go to Boston for treatments but there have been a few changes.
I took the bus down to Boston with my son Matthew last Friday to talk with my doctor and to have another transfusion. I have been off the pills that put me into the hospital three times. I was so afraid that the doctor was going to stop my clinical trial.

The doctor gave me three choices.

1. Continue with pills and infusion but cutting the dose of the pills down to 20 mg.

2. Continue with just the infusion and see if it shrinks my tumors.

3. Stop the Clinical Trial all together.

The doctor told me that my adrenal gland was  still not working and putting me back on the pills could put me back into septic shock once  again! We made the decision without much difficulty. Going with just the infusion and see if it will help shrink my tumor. Will see an adrenal specialist this Thursday. Another trip to Boston but an important one.

Sold my brand new bike last week. That was a tough one for me. I am having Future in Sight come by and giving me a few ideas to help me with my vision. They feel that I need a walking cane. EEKS! That is a hard one for me. I will have someone walk with me that is on my right side. I have walked by myself a couple of time and am very careful. 

So many changes.... I have decided that I need something to work for and keep me in a positive frame of mind.  I  plan to sign up for the Bill Luti race that  is in July. Thinking that I  have someone that will stay on my right side that day. I know that I will be walking some of way. Just want to make it to the finish line!

I promise to try harder to keep up with my blog!

            Christa and I are walking once again! I am feeling              so much better now that I am off that pill! Just                    hope the infusion works!!!!

June 8, 2018

     Made it to Waltham on Monday to have my chest x-ray. Chose Vanilla and berry drink this time It took me an close to an hour to drink them both. UGH! I did crosswords with my friend Valerie. If I can't answer the question I have to take a big chug. X-ray completed and now to worry about the results

My sister, Becky came down from up north on Wednesdays to drive me to Boston on the following day. We have a schedule and list of people who have offered to help get me to Boston for my treatments. It was her turn. My appointment was for 11:00 a.m. We left at 8:30. Glad we did . There was an accident and it took us two hours to get to Mass. General.

     Labs completed....came back okay. Dr Sullivan next. I was brought back to one of the examining rooms where I waited with sweaty palms and nervous stomach. HERE HE COMES!!! Why does he look so serious????
The test came back in our favor. The two tumors have shrunk in size. Not much but have shrunk.. Wait a minute! Two tumors? I forgot about the kidney size bean tumor on the outer lining of my stomach. I HATE MELANOMA!!! I fought back my tears and tried to pulled it together. Adrenal gland has shut down totally.  What do we do now??? The doctor blames my two septic shocks on the pills that I were taking daily and has decided to just do the infusions every two weeks. 

We had to wait until 3:30 for my infusion. Never left Boston until 5:30. This infusion makes me feel tired and yucky for a couple of days. Will see an adrenal specialist at the end of the month .
I am hanging in there but this certainly been a tough couple of months. Keep remembering how blessed I am to have my family and friends who have supported me. Couldn't get through this without you! xxoo

June 5,2018

I thought I would try and catch you up to date. It has been a really tough couple of weeks for me. I was doing so well on the clinical trial and now things are not so great. As you all know, I went into septic shock a month or so ago and ended up in Boston for a week. Blood pressure dropped and organs starting to shut down. They thought that I had pneumonia I was dehydrated and very very sick. My b/p dropped significantly low. They were able to give me high doses of prednizone to slowly rise the blood pressure. Had every test in the book down they found nothing other than a rash on my chest. Determined that this was from my clinical trial. Also, they found that my adrenal glad was not working which would lower the blood pressure. Went home, they reduced my dose of pills that I took daily for the trial and things were going well.

Last Thursday I started to get the chills and run a low grade fever of 99. I brushed it off until V.N.A. came in that afternoon. B/P extremely low. The nurse called the doctor on call at Mass. General and off I went to Boston. Thank goodness I have such good friends that will just drop everything and take me. Thank you Vanessa and Virene! Got to the emergency room and was admitted to be examined. Chest xray done...negative  blood work done....fine urine checked....fine. They couldn't find anything wrong so they sent me home, HMMMM!

Woke up the next morning with a temp of 100.5. Took two ibuprofen and blew it off. Still felt kinda punky. Went to bed that nigh and woke up  around 1:30 a.m.. Shaking and trembling. Called Steve for help. Temp now 103. Rushed to Emergency Room. B/p 66/44... Back into septic shock. Could not get blood pressure to go up. They tried everything. Finally inserted a line in my juggler vein to get medicine working quickly. I.C.U. for two days and in hospital for one week. All kinds of tests done,,,,found nothing, Still pumped with antibiotics all week long.It was nice that Boston and Concord Hospital conferred back and forth. Thinking clinical trial........This is the chance that I took and I think anyone would try one to fight off their cancer.

WAIT......THERE IS MORE.. Released from hospital last Friday.. So great to be home. Went to bed that night and woke up with an  excruciating headache. Took my b/p but it kept reading "EE" for the systolic (top number) Thought it was broken. Guess I didn't pump it up enough. Took a baby aspirin, put a cold compress on my forehead and went back to bed. Woke up at 6 and knew I needed to get to a doctor. Back to the Emergency Room . Blood Pressure 197/110...was admitted for 2 days to try and regulate my blood pressure. Home now and monitoring it myself.  Trying to remain positive but getting discouraged.

Off to Waltham, Mass tomorrow to drink some gross stuff so they can do an xray of my chest. Boston on Thursday to see my oncologist to go over results and decide what to do next...Will see if this trial has taken more of my tumor. Got some big decisions to make.
Will stay in touch!!!!!! Pray ! Pray! Pray!