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.

August 1, 2018    Page 2

 Off I went to have my cat scan.  Oh how I hated being asked to head to the changing room to put on a johnny, a huge pair of  men's pajama bottoms and a bathrobe. When am I ever going to learn. It was the zipper in my blue jeans that got me this time.  No metal! After putting all of my clothes in a white hospital bag I walking out into the hallway and chose a seat. PLEASE CALL MY NAME! OH NO...  Here comes someone out of the changing room and it is a man. I slowly look up and he looked at me with the biggest smile on his face. He said "Can I sit next to you pretty lady." We had a lovely conservation and both realized that we were both there for similar reasons, but his disease was incurable. My scan was completed and after changing back into my regular clothes I found my friend Val waiting patiently for me in the waiting room. Off we went to the Cheese Cake Factory for lunch and then we headed over to Trader Joe's. All the places that I never seem to go to. What a great way to end a day. Thank you my dear friend !

   Last night my sister Becky came down to spend the night. After a nice dinner we went for a nice walk with Christa. Almost three miles.Not bad!!!. We got up early this morning and headed for Boston around 7:15. The traffic wasn't as bad as we thought. We took my little car. Becky had no problem weaving in and out of lanes.

Had to buy my sister a hat from Mass. General

We arrived at the hospital and headed to the cafeteria for a quick breakfast. Headed up to seventh floor to have my blood drawn and wait to see my doctor. They seem to be having a hard time with my veins lately. It has been hard to get an i. v. started when they can only use one arm. Dr. Sullivan finally arrived to give me the results f the scan.

1. The scan showed that my tumor grew slightly in size. 

2. The infusion that they are giving me is making the
pigment of my normal skin turn white.
Dr. Sullivan says that is somewhat positive on their behalf. The immune therapy is working and
 killing off the cancer cells that are attacking my body. 

3. We discussed seeing  seeing a surgeon and talking about having this tumor removed. Dr. Sullivan would like to do a few more infusions and then have one more scan of my brain and chest.

4. It has been a busy day and I am somewhat disappointed. I am tired of infusions, needles, cat scans, blood work and my trips to Boston. Guess I just need to get to bed and get some rest. My chills have started and I have a slight headache. I should feel better in a few days. Thank you all for being so supportive and following my blog. xxoo

August 1, 2018

It has been a busy couple of days. I headed down to Mass General in Waltham Mass. on Monday. Oh how I dreaded drink that contrast once again. My best friend Valerie offered to drive me this time. She can make a bad day come out smelling like a rose. She picked me up early and said "Let's go to the Christmas Tree Shop before your appointment". What a great idea! After spending lots of money....we headed over to imaging building where I would have my scan. Here we go again! Two pages of paper work once again and then the two wonderful drinks that I had to absorbs. I got through almost both of my drinks. I have learned that you have about one hour to drink them both!  😘  I take my time if you get my drift!

 

I hate this flavor!

Are you sure this is the last one!

  READ ON!!

July 19,2018

Hello again! Since I got off that dreadful pill I am doing great. I have been to Boston twice this month. Once on July 6th and my latest infusion which was yesterday.  Steve has gone with me these last few times and we have taken the bus. We have finally figured out which "T" to take and how to get to Mass. General. It is was such a long day for both of us. On our way back to the "T" we met a nice elderly couple who were from Concord. Bet you wonder how we met them!! Steve asked them if the "T" that were about to get on was the right one to South Station. They said that they also take the bus to Boston for their doctor's appointments. The women was carrying a pillow and explained that she had back problems. We lost sight of them as they got on the "T". We had just ten minutes to catch the next bus to Concord. We were doing fine but then seemed somewhat lost. I look in front of me and there was the lady with her pillow tucked underneath her arm. With a big smile and confidence I said to Steve "Follow me. I've got this." 

I will go to Waltham, Mass. for my cat scan on July 31st. Oh how I dread that day. I hate drinking the  two bottles of contrast and I know that I will not choose the flavor banana! UGH... Will have Steve drive me to this appointment as it is located just outside of Boston. 

Still having a hard time adjusting to no more driving or riding a bike. Thinking of buying a scooter with front brakes.

Will see Dr Sullivan to have my scan read on August 1st. If this clinical trail is not working he plans to stop it. He says that he has something else up his sleeve.

 Trying to remain positive but can be difficult at times. So glad that I have my grand dog Bentley. 

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!

April 22, 2018

Tuesday

Chris and I took the 5 o'clock bust to Boston. He picked me up at 4 o'clock so we could run through Dunkin Donuts. Arrived in Boston a little after six. Lots of walking  to get to the red line Three stops and we arrived at Mass General. Blood work done and ready for infusion. WAITED A LONG TIME!!!! Dr. Sullivan came in and told me that my liver count was elevated and that they were going to hold off  with the infusion. Disappointed but knew that it was the right thing to do. Took my pill that I take everyday (it opens up the cells in my body to kills off the cancer that may be floating around.  Off we went to catch the bus to go home  

I have got to admit that it was fun being with my son and I actually enjoyed seeing some of the sights of Boston.

Went camping last weekend with friends. Good change and I continue to walk daily. I got up early and walk the beach alone... So peaceful and relaxing. Brought my camera! Still trying to focus with my right eye. Will take some practice and time!

Had my blood work done at the Clinic in Concord yesterday and I got a call from Boston today. Liver counts are much better. Head to Waltham Mass next Tuesday to drink two bottles of YUCKY stuff and then a cat scan of my neck, chest, abdomen and pelvis. Boston next Wednesday to see Dr.Sullivan to hear the results of the scan and then another infusion. I am a little nervous to hear the results. It has been a difficult couple of months but I continue to remain positive. It has been the cards, phone calls, visits and support from all of you that keep me going. THANK YOU SO MUCH

Walked 2 miles today and 2 miles yesterday with Christa.
I know I missed a few weeks of walking when I was so sick but will make them up. 

                                 Rock and Race

                               Lisa, Maya and Andy!

Hopes that I can run or walk it next year. Will stay in touch! xxoo

5-13-18
Tuesday night


Hello my dear friends! After coming home from the hospital I had one week to recover at home before going back down to Mass General to talk about continuing with my trial.We needed to cut back the dose as it was too strong for me to tolerate. I was still recovering from my stay in the hospital but decided to continue with the trial. Within two weeks it had taken 20% of my tumor.
Was there for 8 1/2 hours that day with my friend Sandy. Blood work, infusion and lots and lots more blood work drawn.(also continue to take my daily pill and keep a daily log. Spent the night in Boston as I had to return for one more set of blood work at 8:00.

The treatment seems to be working. Still have V.N.A. coming once a week. They are a little concerned about my weight. I have started to eat better these last couple of days and have put on a couple of pounds. Loosing 25 lbs wasn't any fun.

Have started walking with Christa once again. Walked yesterday and today. We also have been riding scooters! I felt kinda down one day and said "If I can;t drive anymore and can't ride a bike then I will find another way that I can get around. SO BE I

Off to Boston tomorrow for another treatment! Chris (my son is going with me this time! He chose to take the bus! Picking me up at 4 a.m.

So glad to have some energy once again. Thanks to my sister Becky and my friend Val for rushing me down to Boston 3 weeks ago. It sure was a close call! Don't really remember much that day! Will have Christa put a few photos of us on the blog tomorrow. Having a hard time loading them!

Thanks again for all of you who have been following our blog! It is good to be back!