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!

November 15, 2018

I am now home. Surgery went well. Still waiting for lab results. Will take some time to recover. Very sore!!!!! Glad tumor is gone. It had grown to the size of a gulf ball. I actually think that my breathing is better. My sister Becky came down to help me for a few days. She left yesterday. Lots of tears after she left. Heard snow is on it's way. Guess Steve will have to shovel on his on.

Glad surgery is over. Start back on clinical trials after Thanksgivings. Ugh..  So tired.

10-30-18

I apologize for not writing in my blog 
 sooner. I have been back and forth to Boston for infusions this last past month and also have seen my lung specialist. My doctors feels that he needs to remove the cancerous tumor that is in my left lung as it has grown a little more. They will be removing the lower left lobe of my lung to do this. I will be going in for surgery the second week of November. There for 4 days and recovery period is 4 to 6 weeks.
I am having a hard time with all of this. I want this tumor to be removed but know I may have some medical issues after surgery as my adrenal gland is no longer working.

 I often think of the five stages of grief!

1. DENIAL:

    Maybe it isn't cancer... Could they have read my test results wrong???? So many people are afraid of that word cancer and so am I. I will just go for a second opinion. This can't be happening to me.


2. ANGER: 

     Yes I would admit that I was angry eight years ago when I was first diagnosed with my melanoma AND I
CONTINUE TO BE ANGRY. I have fought my melanoma for eight years and now it has moved to my lung.  I have had three treatments. Interferon, keytruda and now continuing with a new clinical trial... I truly wish this terrible disease would go away from my body and leave me alone.

3. BARGAIN: 

I promise to exercise, eat healthier foods and take better care of my body. Just give me one more chance. 

4. DEPRESSION:

 Oh, this is a good one! I have been depressed on and off these last eight years. My doctors have tried to put me on a few medications to help that but I could not tolerate them and I did not like the side effects that these antidepressant were giving me. I try to deal with my health issues on my own. So far so good. Remaining positive and thinking of how fortunate I am to still be here has helped. Another surgery to go. I just have to keep reminding myself that the surgeries are keeping my melanoma at bay.

5. Acceptance: It  has been a hard thing to do. You get up in the morning and thank god for another day and go to bed each night and worry about being here another day. I will never accept my cancer and will keep fighting.  I have to much to do in my life.. My granddaughter is graduating this year. from high school  I WANT TO BE THERE....My son is getting married next year. I WANT TO BE THERE. My Mom's 95th birthday is next year ..I WANT TO BE THERE.
Any one out there that has been battling cancer feels the same way that I do. You keep pushing and fighting each day. We just have so much to live for.

I will remain strong and fight until I can't fight any longer.  Pray for me on the 8th as I continue to remain strong. 

                   My beautiful granddaughter!

My Mom at the age of 93.

My soon to be daughter in law! She is such a love and I am so happy knowing that she will be joining our family.

I am truly blessed to have my friends!

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.

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!!!!