8-28-19

Life is certainly a challenging at times. Things have been great for these last couple of months. Treatment, Mri, cat scans ajd athe worrying on whether my melanoma would come back!!! 

It has returned.!!!!! My melanoma!  It has grown from 4 mm to 8 mm within two weeks... It is between my 8th and 9th rib!!! They say that it is hidden within the tissue...Will see a melanoma surgeon after Labor Day!  The doctors are still feeling that this trial is working'

I have always tried to be positive but this has really hit home.. DAM YOU MELANOMA!!!! You are not going to win...

I need all the support that I can get right now! A response to my blog knowing that you are following me and know that you  care would mean so much to me!

These are just a few of the reasons why I continue to fight..

My sister-in-law who brings me to Mass General.

My best friend VAl!

 My husband who has never left my side.

 

 My soon to be daughter-in-law Lisa and son Christopher!

Our soon to be new granddaughter Ava!  So beautiful!

 My dear son... Matt!

 My walking buddy Christa!!!

 Our cat Sim

 My soon to be daughter-in-law, Lisa.xxoo

 My grandchildren Tristan and Trevor!

 My grand dog Bentley!

 My sister Becky who has never left my side.

AND!!!! My family!

I will fight this next bout of melanoma! Many times I do feel defeated!

But I remain positive and hope to win this next battle!  

July 15,2019

As I was saying it was a busy June. Senior proms and graduations

 

 

Senior Prom!

 

•  July has been a busy month also.  We had the 10th  Mountain Memorial Service in Landaff , New Hampshire. My Dad was in the 10th Mountain Division. He decided to start this Memorial Garden in 1993 where we grew up as children on our farm.  It was to honor the special men who served as 10th mountain troopers during World Ward II. This garden that Dad created started with only four crosses. The comrades that he loved and lost during the war. The garden grew each year and family, friends and loved ones came from afar. When my Dad passed away we had to sell the farm. The garden grew and had over one hundred crosses of these veterans who fought during World War II. I am so proud of my Dad. We were fortunate enough to have a descendent and husband that wanted to carry on this legacy. What wonderful people! My mom and two other wives were there to honor their husbands. No veterans!

 

                              Mom and her dear friend.

 

A  section of the Memorial Garden!

 

Guess I got carried away but I am so proud of my Dad and go every year to this service .

A few negative things going on right now in my life but trying to deal with them. One of my dear friends father, has just been diagnosed with a brain tumor and there is nothing that they can do! When are they ever going to find a cure for cancer. Have reach out to an organization called Billy's Buddies. An organization for people battling melanoma. It is just nice to be able to talk with someone who is dealing with the same diagnosis that I have been fighting. Will try and write in my blog more frequently

Hanging in there and remaining positive 

.

July 15th 2019

Hello my friends. I haven't been good about keeping up my blog. I am not going to make excuses.

I am continuing to travel to Boston every other week. I went with my sister in law last Wednesday. She drove and I thought I was riding in a limo.. No bus...no "t."  Air conditioning, music and great conversation. I cant believe that I have been continuing  my treatments for over 15 months.  Scans continue to be clean. I am having another set of scans at the beginning of August and it always makes me so nervous.

Try to walk with Christa when we can, Have kept a log of the days that we have walked.

 It was a busy June and time certainly has flown by.  My granddaughter Tristan, graduated from Merrimack Valley High School in June and my grandson Trevor, graduated from 8th grade also from Merrimack Valley High School. I was so happy to be there!!!!! Had a graduation party for Tristan. Busy June for sure. 

Trevor with his Dad Chris! Four more years to go!

May 19, 2010

I have been really bad about keeping up with my blog  Things have been okay! Trying to walk as much as I can but the weather hasn't been that great for the month of  May and April!  Back and forth to Boston every other week for my treatment. I hate taking the bus, riding the "T" and spending the whole day at Mass. General.  I had my scans last Tuesday and then my treatment on Wednesday.  Scans good once again!!!!! I usually spend  the night at a motel. Scans done on a Tuesday and results and infusion on Wednesday. I have many friends that take turns going with me to Boston! Wish there was someway that I could repay them.

Been down in the dumps lately!!  Some of the side effects from treatment bother me but try not to complain. I guess it is the unknown that gets to me. Just want to be around.....

While sitting on the shuttle going to Boston last week I overheard a gentlemen who was with his wife talking about how he has been going to Boston every week for the last year for his treatments. They live up near Bangor, Maine. Mass General is the best place to go to get treatments.... I am lucky to only be an hour away! I wish I could help this couple!!!

 Why do we complain about the little things in life?????? Why does god give us more than we can bare????  

I am still not driving Prism glasses are working but will wait for my next appointment.


Summer is approaching and that is a good thing!  I am enjoying starting my garden and we will be camping soon.

Wanted to do the Race and Race for cancer last week, but knew that I could not run it like I have had in the past. Hard for me to go there!  My fishing buddy Finn ran the whole race and had my name on his running shorts. So moving to me.

  Finn called me yesterday and said "Bonzo"...  Lets go fishing!  He had his own boat that he had save money for and purchased. He is my fishing buddy and means the world to me! I sat in the canoe with his Dad and got lots of pointers on how to brush up on my casting and trolling! We fished for four hours..  I caught  two bass!!!!!  Getting better at my casting and taking the fish off the hook...

I spend everyday to the fullest and love
being with my family and friends! We all need to reach out to someone that we have not been in touch with for a very long time!  I love you all that continue to follow my blog!

                           

              Finn finished the race in honor                                          of me!!!

                One of my bass that I caught.                   My other other one was much                                           bigger!   

                                                                                       

             One of my other fish that I                            caught from a previous fishing                              expedition.

April 8, 2019

It has been a busy few weeks. Got my test results back concerning my adrenal gland. NOT WORKING! My thyroid level are also way off.  I was hoping for a slight improvement! Guess I will just keep hoping that my immunotherapy treatment that I am getting will keep my melanoma from returning.

My cousins came to New Hampshire for a visit and spent five days with our family. They wanted to see my mom and help me out by taking me to Boston!  It meant so much to my sisters and my family.  We wert all over god creation. Up north to see mom, ( we saw 5 deer and a bear) Mom enjoyed riding with us around her old stomping grounds which were Berlin and the Errol area. My cousins also drone me  to Boston to have my treatment, We also went to the coast of Maine to see the ocean and to walk the Marginal Way in Ogunquit Maine. We also went hit many antique gift shops along the way.  My cousin and her daughter both live in Missouri. It was great spending time with them. I walked everyday but did not log it. I will not count this week as I did not use my walking app. Will get back on track this week.

I just found out that my mom's melanoma has returned...... After being clean for eleven years. The tumor came back in the same spot!!!! She has decided to have the tumor removed and has talked about maybe having a pet scan to see if it has traveled anywhere else.. I am really having a hard time with this one!  My melanoma and my mom's is on the outside of our upper left arm. Not just the sun but genetic!!!!!  My mom will not discuss it with me. She is more concerned about my health issues. I am really having a hard time dealing with this one!

Please say a prayer for my mom! 

                            
                            Hanging out with my best friend Val!                                     

 

                              My beautiful cousins with my mom! Their Dad
                  was my mom's brother.

 

 

 

March 29th, 2019

Back to Boston today to have a test on my adrenal gland. Go back next Wednesday for my infusion.

 Kind of funny! I sent out a request to my two sons, my soon to be daughter in law and one of my old best friends that happened to be in my group text.

 Steve really needed a break! It is hard getting up so early in the morning to hop on a bus to Boston, ride the "T" and spending the whole day sitting in a room for five hours or more while I have my infusion.

 My classmate replied immediately I was so happy. She drove down last night so we could catch the early bus to Boston.  We have been friends since grade school. Throughout the years we had lost touch but now have renewed our friendship within few years. I am sure my illness had some part in bringing us back together. She is so there for me!

We all have met so many friends throughout our lives that have been so dear to us and we seem to loose touch with each other. 
I am so blessed! So many people praying for me. 
We all have a biological clock that ticks inside 
 us from the day that we are born. We are not getting any younger! Does it take an unexpected illness to reunite with any friend?????

 My blood tests were done today for my adrenal gland that has not been working for sometime.  Will get the test results back on Monday. One good thing....They have had other patients on this similar trials that I am on  and their adrenal glands also have shut down.  They are finding that this is one of the side effects from these different trials.

Have been faithful with my walking!   All for now.

                             My friend Tina!                        

WE ARE BACK!!!

March 15tht.  We had a nice walk and it was good to be back to complete our promise to LendME A Hand! We walked 2.39 miles.

                                        Beautiful day! 60 degrees.

 March 16th. I walked along today Tried out my new prism glasses. Sneakers wet from the puddles but it didn't bother me one bit.

March 26, 2019

I have continued to walk everyday and I will do my best. It will take some time. I have a app. called Map my Walk. It will give the distance, where I have walked and average pace. I use this daily so I know how many miles I have walked.

Underneath the word distance it give the date which was Tuesday, March 26 at 2:13 P.M. I just wanted to give you all an example. I will try and have Christa help me with another example showing the date and time.

 

I looked back at my Map my Walk as it saves all the days that we have walked.

       January 2018  We walked 31 days

         February 2018  We walked 28 days

    March 2018 We walked 24 days

April 2018  We walkd14 days

May 2018 We walked 4 days.

           June 2018 We Walked only  2 days.

       July 2018 We walked only 2 days.

   August 2018 We walked 2 days.

         September 2018 We walked 0 days.

    October 2018 We walked 5 days.

        November 2018 We walked 0 days.

       December 2018 We walked 0 days.

  January 2019We walked 0 days.

    February 2019 We walked 3 days

           March 2019 We walked 13 days so far.

We have walked a total of 128 days and need to walk another 237 days to complete our goal. It seems like a lot of walking but right now I am feeling great and will walk every day.

Went to Boston last week and stayed there for a coupled of days with my sister. So nice to ride in a car and not the bus. I had to have my body scan and brain scan done early in the morning and the next day they gave me my result's and another infusion. I hate the brain scan as I seem to get very claustrophobic lately. I decided to take pill to help me relax. I didn't' think that it was enough after waiting a half hour for it to kick in so I took another one. EEEKS! I was very sleepy through both of my tests and my sister had her hands full afterwards. We decided to go pick up Steve's keys that he had left at the restaurant last month when we were in Boston!  Near Beacon Hill....The sidewalk was very narrow and I decided to go ahead of my sister, Becky. my boot got caught underneath

a grate and I went flying.

 

 Two nice men helped me up off the sidewalk. Forget the keys!!!!! We got to the car and to our motel room and I slept until dinner time.

 

Got up early the next morning  and headed to get my results of my scans and to have my infusion. My scans came back clean! What a relief. It is so nerve racking!

 

I will continue to wear these socks that a dear friend gave me! Thank you Pam!

 

 

Heading  down to Boston this Friday to have my adrenal gland tested. Let's hope it has kicked back in. If not I am on prednisone for the rest of my life. Ugh!

Next time I have my scans done I will only take one pill!!!!! That's a promise. Keep me in your prayers!  P.S. My knees are still sore!

 

 

 

 

 

 

 

3-11-19

I will not go to bed until I finish this blog. Spent another 2 hours trying to type about my last few weeks and I lost the first page.  I finally realize that I need to start saving my things that I write. It is 10:30  and I'm rather tired but I promised myself that I would not go to bed until I finish this blog. I guess I will make this short and brief...

I called my optometrist at the end of February to see if my new glasses arrived. Just waiting  patiently to hear from them... Figured that the squeaky wheel gets the grease so I called!  It had been over a week! My new glasses were in!!!! I immediately called the Vision Victory Center and asked if they had any openings for this same day. They said that they could not fit me in and that it would be a couple of weeks before I could be seen. The day that they wanted me to come in was the day for my infusion in Boston. I told her that I had just got my new glasses and that I could not make the appointment that they wanted me to come in for because of my appointment in Boston  She  hesitated and then asked me if I could come in at 3 o'clock!. 

I arrived at the Vision Victory Center and waited patiently in the waiting room with others that had vision issues. My doctor came out and asked if she could have my new glasses. I gave them to her and waited. She came out with a prism strip on the top of my right lens and a prism strip on the bottom of my right lens. She asked me to take a walk down the hallway and to look into the top  prism. Wow! My peripheral vision was so much better. She then asked me to look into the bottom part of the prism on my glasses. Amazing! I looked into it and saw a ladies sneaker that was to the right of me. in the waiting room. I could have touched it! NOT!!!! It was a foot away! Why did I have to wait so long for this miracle. There is hope out there for everyone.

Look out Market Basket here I come.No more passing me on the right and I promise not to hit the side of the isles and knock off anymore can goods!
Off to Boston again next week for scans and mor mri's. This is when I get nervous! I take the bus every other week and have my infusions! It will have been one year this April since I have had my treatments. I hate taking the bus and "T" that takes me to MAss. General but I don't have much choice. There are people that travel miles and even fly for this treatment that I am having.  WHY DO I KEEP PUSHING SAVE!!!!!!!!! It is now 11:12.
I think this blog is going to be a go! Will let you know how my scans turn out.If there are any mistakes in my blog.....it's okay and I sure you will understand... Love my friends and family. Just a few photos to share!  Christa and I are ready to walk again. New glasses, new outlook on life and need to complete our 365 day walk! 

Our dearest friends!

My grandchildren that keep me going!

My soon to be my granddaughter! xxoo

I thank god for every day that I am her on this earth!

Going to push the publish button now! I've got this!

2-18-2019

                  I AM SO EXCITED!!!!!!!

     I went for my eye doctor's appointment today. This place was called Vision Victory. I have tried other specialist to see if they could help me with the loss of my peripheral vision. It has almost been two years since my brain surgery and I have been to a few specialist that have said that there is nothing that  could be done. I had an eye exam at the beginning of the month and this optometrist told me that there was hope. My optometrist took me into an examining room and we had such a nice talk. She said that she thought that she could help me. She took out a strip that she called a prism and put it on the top of my right lens. It looked like a thick piece of tape. I put back on my glasses and she told me to look straight up and into the prism tape and moving my eye to the right.  WOW! The first thing I saw was a pole lamp. I yelled out!!!  "I can see the light."  We all laughed and I burst into tears. This prism strip on my glasses was going to work for me
I have been blessed once again.  It will take practice and getting used to but I will work hard every day to make the improvements that I need to be able to see once again.
I want to walk alone, ride a bike and my biggest  goal is to run a road race.
This day has become an inspiration for me to keep fighting. There is always someone out there that can help you!   Go for those second, third and forth opinion. I AM SO GLAD THAT I DID..... NOT GIVE UP!!!! xxoo

February 13, 2019

A quick update on some exciting news. I have an appointment with a specialist that may be able to help me with my vision problem. This place is called Vision Victory. They will try and do all that they can do for me. Talking about a prism on my glasses. If this doesn't work they have another idea that they would like to try. It has been frustrating dealing with the loss of my peripheral issue. Seems like I am always bumping into things. Hate going into a grocery store!!!! Shopping carts to the left of me!!! Shopping carts to the right of me! So overwhelming!!! I am always bumping into things and and have the black and blues to prove it.  I am not going to get my hopes up for next monday but pray that something will help me with my vision problem.  If not, I know that I have done everything possible that I could do and will move on!

Had my infusion and took my friend Sandy with me this time! My times have been moved up to 8:30 which makes such a big difference. An extra hour to sleep!!!!  We can now catch the six o'clock bus and not the five. Poor Sandy! What a trooper! I know how much she hates riding the "T". I even got mixed up a couple of times. Outbound!!!  Inbound!!!!  People every where. I will get it one of theses days!

Had a few bad days this week but bounced right back. Stuffy nose, chills and slight fever. A little run down going back and forth up north to help my mother move her things to assisted care.Thank goodness I have a brother and sister's that have helped with the move. 
We had to find a home for her cat and it breaks my heart. The new owners are wonderful and keep sending us pictures of Mittens. He is in a great home and is much loved. Mom keeps asking for her cat and has finally been tole that is is with me. She is happy about that but wants me to bring him up fo a visit.  UGH! Will make her a photo album of her cat Mittens and will give it to her when I feel the time is right.😟

Decided to get my camera out this afternoon andtake a few pictures. on a cloudy and snowy day. Never use it much anymore. I keep hearing my good friend say to me.. "Use your good eye." A private joke that we have shared. I like going out into Steve's truck and sit there with the window wide open. COLD but invigreatine.  I wait patiently for the birds to come out of the bush and to the bird feeders. Something that I have always enjoyed and it made me feel so happy. Will work on my shutter speed as it is somewhat off. My dad was a wonderful photographer. I loved taking pictures but stopped last year.....

 I think I will try again tomorrow.  Maybe the sun will be out.

 Will stay in touch and let you all know how things went next Monday.... Will need a few prayers...xxoo

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!