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!

Update on Bonnie

Hello hello!  I have to appologize for not updating everyone.  It was a busy week! 

Last Tuesday Andy, the kids and I made a trip to surprise Bonnie in Boston.  We decided to go to the New England Aquarium and then stop in to see Bonnie.  As we were leaving the aquarium we got a call from Matt (Bonnie's son) telling us that Bonnie was being discharged.  We headed straight over and went through the discharge process with her. 

She slept the whole way home and Steve and Becky were anxiously waiting for her and tucked her straight into bed.  We are so happy to have her back home!

We didn't really get too many answers from the many doctors that we saw.  Her discharge papers confirmed what we suspected and that was that Bonnie was in septic shock when she arrived at the hospital. 

Bonnie seems to be a little better but is still not feeling well.  I don't believe she has had any fevers and her blood pressure has been within normal limits so I think it is just a wait to see how she feels over time.   Her oncologist would like to continue with treatments and plans on starting her infusions again this Wednesday. 

Fingers crossed that she feels better soon.

Good Morning.  I am finally rested after a long day yesterday.  Boy that hospital is huge!  So many people bustling around in every direction.  All I can relate it to is Boston airport. 

Bonnie is on the 20th floor.  That elevator ride was quite a ride I tell you.  Most of you know I am very afraid of heights!  Yikes!  Her view is quite impressive from her room.  We were able to see duck boats, sailboats, airplanes, helicopters, skyscrapers, a park, the citgo sign and so much more.  This is just a small glimpse of what we could see from her room. 

I was able to speak with so many doctors and give them all the info I could on Bonnie.  Since I have walked with her everyday I have watched her health slowly decline.  Lots of pieces to this puzzle that the doctors are trying to piece together.  They still don't have any answers for us.  Could it be an infection?  Full body inflammation? An underlying condition? Side effects from the trial?  Something else?  Some say infection could still be possible despite the fact that they cannot find it.  She is still being treated with antibiotics because her symptoms were so severe and she presented as if she had a very very bad infection.  Some doctors say she has a small amount of pneumonia some say she doesn't.

Most tests have come back pretty normal.  Her abdominal ultrasound showed a slight increase in size of her heart.  Blood work showed only a slight increase in inflammation but it is a very sensitive test.  We haven't gotten the results of the EKG yet. 

So basically Bonnie is making them work pretty hard to figure out what the heck is going on.  One doctor told me they have seen this before with this trial that she is on.  She must have at least 5 specialists working with her. 

When I was there yesterday she seemed to get a little stronger as the day went on.  Her blood sugar was pretty low but she hasn't eaten much.  We were able to get a little ginger ale into her and half of a grape popsicle.  She seemed to perk up a little after that. 

Towards the end of the day she was itching to get out for a walk.  We did a loop around the floor.  It was good to see her looking a little bit stronger.  She was even joking around which made us pretty happy!

Becky caught this cute picture of us doing our walk.

Bonnie is a tough one!  She will get better soon.  

xo

Christa

In Boston with Bonnie.  We met with one of the oncologists and I was able to ask a lot of questions.  They are having a hard time finding a source of infection.  She may not have an infection but they are afraid to take her off antibiotics just yet.  I asked if she was having a full body inflammatory response and she said yes.  They have seen this before with this trial.  They are still trying hard to figure out exactly what is going on.  They are treating the fever and low blood pressure and hoping this will run its course.  Her tumors have shrunk 20% .  She is having an ecg and ultrasound right now.  I asked her prognosis and she will be here for a while but the doctor was optimistic that she will get through this.

Will keep you all posted!
Christa

Hi everyone! Posting from my phone so I’m not sure how this will turn out.   I am headed to boston with my mom and Aunt Virene now to read all of the love you are sending to Bonnie.  Thank you so much!  She will feel your love that’s for sure.  I promise to post when I get there. Xoxo Christa