Had a busy week. Ray’s Aunt Helen passed away last week. We went to New Hampshire Wednesday (which was my Mom’s birthday) for the wake. We saw cousins that we hadn’t seen in a long time and spent some time with Ray’s Mom and sister Donna and husband Dave. Unfortunately, these are times when we get to see people and catch up even though its a time of sadness. She lived a good long life. May she rest in peace.

So Ray and I stayed at the Hampton Inn in Dover as we always do when we go to New Hampshire. We left for Boston on Thursday morning at 9:30 for my first appointment at 12 noon. I had blood drawn from my port. And then I met with Caroline, the APRN. I was still coughing, even though I was feeling better. My mouth was inflamed and it still hurt to swallow when I ate. I was having indigestion and nausea. They didn’t like my cough so they sent me for a chest xray. My phosphate level was up to 9.5 – just keeps climbing. The xray came back fine – no issues. I was told to use my inhaler as needed for coughing fits, wheezing, etc. And to continue taking 1600 mgs of binder with each meal. I had not used my inhaler for almost a year – I have this for my mild asthma. Was told to use the Lidocaine for the inflamed mouth and throat. I was given a prescription for Prilosec to help with the indigestion. It works very well. The indigestion is from the binder pill. This is my off week – not taking the clinical trial drug, so I was surprised I still had to take the phosphate binder. We got home around 4:30.

Friday I called Mass General for something else for my mouth pain. They returned my call several hours later. I heard about Miracle mouthwash from my sister Diane – it’s a combination of malox, benadryl and lidocaine. The straight lidocaine tasted so nasty that when I tried it, I threw up! So anyhow, they called in a prescription for Miracle mouthwash. Much better. I was also told to do warm water and salt gargles. These helped a lot. Within a few days the inflammation of my mouth was gone but I still continued to have pain when I swallowed – so every time I eat it hurts. Nothing is helping with the pain. I have 2 spots at the base of my tongue that hurt when I eat also.

Today I decided I’ve had it with having pain every time I eat. This has been happening since May 22nd and it’s getting very frustrating. I called Mass General at 9:15 this morning and left a message that I want to stop taking the binder med because I believe it’s causing the swelling in my throat, thus making it hard to swallow and giving me pain when I eat. It’s almost 2 pm and I haven’t gotten a call back yet. I already ate breakfast and ate lunch and DID NOT take the binder. I still had pain when I swallowed/ate. I’m assuming it’ll take some time for the swelling to go down. We’ll see what the next couple of days brings. Other than dealing with the pain when I eat and the irritation from eating, I’ve continued to have a good amount of energy allowing me to do many things. I’m back cooking dinner and taking care of cleaning the house and doing groceries.

I went to the fabric store the other day and bought material and foam filling to make a cushion for a bench that’s on the porch. I worked on that yesterday. I’m going to cover a small footstool we got from Ray’s parents house when his Mom moved out with the same material. I’ve got a couple of toss pillows that I’m going to cover too. Opened up the sewing machine yesterday for the first time in many years! Still working great – had this machine since I was 16 years old. Yes, that’s a long time!! I’ve decided to put a zipper in the cushion so I can remove it from the foam piece and wash it. Of course I didn’t buy one, so I’ll be headed back to the fabric store soon!

Thanks everyone for your prayers, love and support. You are my strength!!!!

Had a long day Thursday, May 21st. Left for Boston at 6:45 am and arrived home at 6:30 pm. I had an eye appointment at 9:45 am. Then I didn’t have a blood draw until 12:30. Eye examine went well. No problems with my eyes. We spent a little time in the courtyard at MGH and then we went back to the car and I took a nap! I’m fighting an upper respiratory infection, probably bronchitis, so I was wiped out from our walk to the eye office. Thankfully when we met with Dr. Zhu at 1:30 he faxed in a prescription for a Zpak and I’m feeling better.

My phosphate levels were up again. They are now 7.7. So I am now taking 1600 milligrams of the binder 3 times a day. I’m having a variety of side effects. Trying to figure out if they’re from the trial drug or the binder. My throat is swollen – not sure if that’s part of the respiratory infection or a side effect from the binder. It hurts to swallow sometimes. Dr. Zhu actually gave me a prescription for lidocaine, but I’m not using it as when I read the instructions, etc. it’ll numb my entire mouth. I may use it at some point, but not yet. I’m constipated. That is more than likely from the binder. I’m taking Senekot and having a Miralax cocktail. My mouth gets sore, but this comes and goes – this could be from trial drug. Things are tasting different, but not always. I have water tasting salty and non-spicy foods tasting spicy. I tried to eat an apple and there was no taste at all, so I couldn’t eat it. These could all be from the trial drug. But, I think the salty taste could be from the binder. Also my muscles get achy once in a while – that would be from the trial drug.

The good thing is that none of these things are constant. I’m taking Advil for the sore mouth and swollen throat. Some people that have been on the trial for a while have indicated that they had some of these symptoms in the beginning, but then they went away.

In spite of all this, my energy level is better than it has been, so I’ve been able to do a lot more things and that makes life so much better.

I’ve done very well on the phosphate diet paying attention to everything I eat and staying below 600 mg per day – except for the two cookouts this weekend! Because the trial drug doesn’t let my kidneys process the phosphate there seems no way to avoid the phosphate levels increase. Again, with other participants the same thing seems to be happening. All of them that I’ve interacted with have had their trial drug dosage reduced. We’ll see what this Thursday brings. It will also be the beginning of my off week.

We had a great time at Jay and Heather’s annual Memorial Day cookout/party on Saturday. Yesterday we went to my friend Julie’s cottage at Hawk’s Nest Beach for a cookout with her family and friends. Had a wonderful time. The weather was perfect for both cookouts, food was delicious and the company was awesome. Very good weekend!

I think most of you that read this blog already know our wonderful news, but for those of you that don’t – RAY AND I ARE GOING TO GRANDPARENTS!!!! WOO HOO!!!! WE ARE SO EXCITED! Heather and Jay told us the news on Mother’s Day. They are due January 7, 2016. Can’t wait to get my hands on that little bundle of joy. In the meantime, we pray for a beautiful, healthy baby.

Thank you all for your continued love, support and prayers. They are so appreciated. You are all my strength!

There are only 2 days left and I’ll have completed 2 weeks of the trial. We had a long day last Thursday. Same routine – take blood, have an EKG, meet with nurse, take pills, fast for 1 hour, then have lunch and return 2 hours after pills were taken and have more blood drawn and EKG.

May phosphate level increased to 6.3 from 3.2 the previous week. Because of this increase, they increased the amount of the phosphate binder. I was taking 800 milligrams with meals and now I’m taking 1200 milligrams with meals. One thing that started happening a few days after the increase was that some foods were tasting different – some were more spicy. A weird thing was that water began to taste very salty. That stinks because I drink water throughout the day, which is something they recommend. It seems to be saltier later in the day – after I’ve taken the 3 doses of the drug. So I’m trying to drink more water earlier in the day.

Trying my best to regulate phosphate levels, but it is a challenge. I ordered a book recommended by another person that is on the trial at M. D. Anderson in Houston, TX and received it Saturday. It’s like an encyclopedia! But it lists all kinds of foods and what vitamins, minerals, etc. it contains. I’ve gone through it and highlighted foods I normally eat or have begun eating because of the phosphate levels. I’m sure I’ll be highlighting more things as I continue with this trial.

So, not perfect, but better than being on chemo. One very wonderful thing is that I’ve had more energy so I can do stuff around the house, i.e., laundry, dishes, cooking, etc. I’ve actually been doing the grocery shopping for the last 3 weeks. I hadn’t been in a grocery store in 5 months or so. So this is good.

Had a wonderful Mother’s Day with a cookout at the Beacham’s. Jay and Heather gave me a beautiful bouquet of flowers and Julie sent me a gorgeous drop pearl necklace and Gharandelli chocolates! Good thing I got the chocolates early in the week as once I started the trial I couldn’t have chocolate anymore because it’s high in phosphates.

The porch is done and looking beautiful! I’m enjoying it immensely. I still need a few more pictures and a cushion for the bench, but it’s looking good.

Thank you everyone for your support! You are my strength in this journey!

Began the trial on Thursday, May 7th. We got to Boston with plenty of time for our 11 am blood draw. That was taken from my port. Also had an EKG. Then met with Dr. Zhu. We discussed the trial and the low phosphate diet I need to follow. I needed to fast 2 hours before taking the trial drug, known as BGJ398, and fast 1 hour after taking the drug. I met with the research nurse and took 2 pills. One is 100 mg the other is 25 mg. The pills need to be refrigerated so they were in a bag with cold packs. We were given a few to get us through the rest of our day. Thankfully Ray had cold packs in our cooler also. After I took the 2 pills Ray and I sat in the waiting room. I had to wait 2 hours to have more blood drawn and another EKG, but only 1 hour to eat. We went to the hospital cafeteria at 1:30 to have lunch.

I was feeling kind of out of it, but as Ray says, this is how I am when I’m in a new and strange place. So I decided to make a salad to start with this low phosphate diet, while Ray got a couple of burgers and chips. We got in line to pay. The cashier said something and I didn’t hear him, so Ray says ‘put your salad on the scale’, I said, ‘what?’ He repeats himself and I put my salad on the nearby empty napkin dispenser! He looks at me like I’m nuts and says, ‘you need to put the salad on the scale’. I say, ‘oh’, and remove it from the napkin dispenser and put it on the scale. When we sat down to eat Ray proceeds to go over the entire incident at the checkout and we are crying we’re laughing so hard! OMG! I guess I was a little discombobalated!!!!

After lunch we went back to the waiting room and when it was time I had more blood taken via needle in my arm and another EKG. We found out that the research blood must be taken via a needle and not from the port. So it looks like I’ll have a port draw when possible, but most of the time I’ll have a needle in my arm, back of my hand, whatever vein is available as I’ll have 2 blood draws each time I go there.

We got on Route 93 to go to the hotel in Arlington and finally 45 minutes later we were at the Walgreens on the same street as the hotel. Had to have the prescription filled for the phosphate binder that I must take 3 times a day with meals. That took another 45 minutes. We finally got to the hotel around 5 pm. When we tried to check in they said they didn’t have our reservation. I had a confirmation, but after several attempts I was unable to access it on my phone. Finally another person at the front desk asked if Ray’s name was Raymond. She found our reservation. It was under Beth and Raymond Mary!!!! When I filled out something online I know that it asked for guest name and I put Mary Beth and Raymond George. Gotta love computers!!!

Once we got to our room I just passed out on the bed! I was exhausted. They had a complimentary dinner that was served until 7 pm so I could only sleep for an hour. After dinner we discussed our day and Ray found a better way to get back to Boston in the morning.

Had a complimentary breakfast in the morning and were on the road at 9 am. Still ran into traffic but not as bad as 93. We got to Mass General a little before 10 for my blood draw and EKG. I had my pills at 11 am and we took off roaming the halls of MGH. They have a very nice courtyard near the cafeteria and we went out there for a while, but it was actually cold there. We found a nice sitting area inside and checked emails, etc. We decided we’d get lunch on the road, but had a pastry snack to tide us over. Finally at 1 pm we were back in the waiting room. I had another blood draw and EKG and we were on the road home around 2 pm. We got home around 4:30 and just chilled for the evening.

So, today is day 3 and I’m feeling good. No side affects at all. In my interaction with other BGJ398 participants there is an issue with the phosphate levels. Even those that follow the diet closely and take the pills that bind the phosphates have elevated phosphate levels. Most of them have reductions in the mg of the trial drug. But they’ve also had tumor shrinkage. So hoping for the best. Unfortunately, in the almost 7 weeks I was off chemo I got new lesions on my liver and lungs. So hoping and praying this drug works as well for me as it has for others.

Had a nice visit today from nephew Deke and his girlfriend Kelly. They live in Boston and were headed to a friend of Kelly’s who lives in West Hartford. It was so nice of them to stop by to visit us. They gave me a beautiful bouquet of flowers. Found out that there’s a flower warehouse on Park Avenue – that’s where they went – who knew! Will be celebrating Mother’s Day tomorrow with Heather & Jay with Heather’s family at her parents house. Got a beautiful pearl necklace earlier in the week from my wonderful Julie along with a bag of Gharadelli chocolates — thank goodness they arrived earlier this week as I can’t eat them now!! There’s a few left that Ray can enjoy!

Headed back to Boston this coming Thursday. Expect it to be the same kind of day as Friday–2 blood draws, 2 EKGs and pill taking.

Will have a CT scan at 8 weeks. That’s when we’ll really know if the drug is working or not. That’s the last week of June.

Thank you for your love, prayers and support. We really appreciate it. You are my strength in this battle!

Love to all!

So excited! Just got word from Mass General that I’ll begin the clinical trial on Thursday, May 7th. We have to be there at 11 am. This is good. Means we don’t have to leave East Hartford until 8 – 8:30 am. I’ll have blood drawn, then I see Dr. Zhu, then I’ll be given the pills. Then I wait two hours and have blood drawn and an EKG. I have to fast 1 hour before taking the drug and 2 hours after taking the drug. On Friday we have to be there at 10 am and have blood drawn and an EKG. Then take the pills and 2 hours later have blood drawn and an EKG.

We will be staying overnight on Thursday. Julie and Kenny stayed at a nice place in Arlington a couple of years ago so we’ll be looking into staying there.

For the first month we’ll be going to Boston once a week. Then we’ll go every 2 weeks for the second month. Then we’ll go once a month after that.

We celebrated with Jay and Heather last Friday by going to dinner at Azteca. Had a great time!

Today I went to lunch with Diane, Alisha and Sharon. We went to Maggie McFly’s at the mall and ate outside. It was good and it’s a beautiful day!

Had a long day yesterday in Boston. Had blood drawn, then had a MUGA test of the heart. What an ordeal. They take blood and then mix it with radioactive material. That takes about a 1/2 hour or so. Then they inject this back into me. Then they put me in a bed, similar to the CT scan bed, and then ”bind’ me in so I won’t move and put a large camera over me and take pictures of my heart. This process took about an hour. We were there for a couple of hours. Then I had to go to an eye center a couple of blocks away and have my eyes tested.

We grabbed lunch on the road on the way home. When we got home we were exhausted and we both took a good long nap. Had a great sleep last night.

Looking forward to this next chapter in my journey fighting this cancer! I can’t thank you all enough for your continued love, prayers and support. We really appreciate it. You give me the strength to fight this fight!!!

Love you all!

Got a call from Mass General this morning. They cancelled my appointment because all the test results are not in yet. They rescheduled to next Thursday 4/23/15. They may make the appointment sooner than that if possible.

So Ray went to work and I’m going to enjoy this beautiful day!

I had the biopsy at Mass General on 3/30/15. Didn’t feel too good right after. A lot of lower abdominal pain where I couldn’t get comfortable. Felt nauseous. It seemed to be gas, so after an hour or two I was released to go home. The pain came and went until after dinner that night and it subsided. During the night I went to the bathroom and my urine was a dark yellow. Thought it was from some med they had given me. Tuesday I had a hair appointment (can’t miss that) and eye doctor appointment. Felt fine. Tuesday night got up to use bathroom as usual and had very sharp pain in back that came around the front and gripped me like a vice. Very painful. Lasted a few minutes and was gone. I went back to sleep. Wednesday I was very tired in the morning and napped. Had lunch and a couple of hours later I threw up. Weird. I had some pain that again I thought was gas and my stomach was feeling a bit queasy. I put off eating dinner for a while. I finally decided to try to eat and took two bites and the back and vice grip pain was back. I needed to throw up. I did and it was BLOOD! There were a few clots of blood and then a lot of fresh red blood. I called for Ray. Talked to Dr. Hong and we were off to Hartford Hospital emergency room – Ray, me and Julie. Ray let Jay know when we got there.

After hours of being poked and prodded, I was finally taken to a room at 5:30 am on Thursday. A few hours later a GI team came in headed up by Dr. Colin Swales. He suspected it was a bleed from the biopsy. They wanted to do an endoscopy to make sure it wasn’t anything else. A few hours later I was whisked off to have that done. Didn’t take long and it confirmed what Dr. Swales thought. Meanwhile, they still wouldn’t let me eat or drink because they might do another test. Finally around dinnertime on Thursday I was allowed water, juice or ginger ale. Yeah! Liquid diet.
Around 8 pm they moved me from the 7th floor to the 5th floor into a private room on the surgery floor of the Bliss building.

Friday morning I had another episode (pain included) with a bm and vomiting that was just dry heaves. BMs were the ‘old blood’ leaving my system. I scared a young resident right out of my room!!! I had a liquid breakfast and a soft lunch of scrambled eggs. They decided to give me a full diet for dinner. Heaven! Had mac’n cheese. 11:30 Friday night I had another episode. More pain, more ‘old blood’ in BM and vomited my dinner and more blood – old blood. I was very upset about this because there was a chance I was headed home on Saturday. I knew that chance had just flown out the window. So of course on Saturday they say they want to continue monitoring my episodes. They were taking blood every few hours at this point and my liver panel numbers were higher than they liked and they said I may have to have another procedure. They were also monitoring blood loss where I might need a transfusion. I opted to have a soft diet for Saturday. I ate scrambled eggs for breakfast, lunch and dinner! By breakfast on sunday I couldn’t stomach the eggs anymore and asked for something else. I think they bought me pudding. (After I said I wouldn’t eat cream of wheat!) Had full diet for lunch and dinner. Yes, it was Easter Sunday and I was in the hospital. Shed a few tears on Saturday when I knew I wasn’t going home and wasn’t spending the holiday with family. Had visitors on Friday and Saturday and Sunday though so all was good. Of course, Ray and Julie were there most of the time. Jay and Heather came every day, too.

At some point I asked about taking a shower. I think it was Sunday and was told that I needed to let the water run to warm up. After 5 minutes of cold water, I gave up. Thankfully I had hot water in the sink in my room and was able to wash up in there. I don’t know what it cost to stay overnight in the hospital but I would guess $20,000 to $30,000 and I couldn’t even get a hot shower! They had a lame excuse that they’ve been having problems with it.
I had a pain free BM on Sunday night so I was convinced I was going home Monday. Early Monday another intern came in and said my liver panels were still high and they wanted to schedule a procedure, ERCP, for Tuesday. I told them no way. I was going home and that was that. After a few hours of back and forth between the 2-3 teams of doctors I had they agreed I could go home as long as I had a blood test in 2 days and scheduled the ERCP for later in the week. No problem. I had been in there for 5 nights without much sleep. If the nurses or aids weren’t bothering me the noises made by patients on that floor kept me up. AND I needed a shower. Finally I was released to go home at 2:30 pm. Came home and took a 2 hour nap. Had a nice dinner and then a wonderful shower!

The ERCP was scheduled for Monday 4/13/15 at 7 am. I had blood drawn at my oncologist office on Wednesday. After waiting more than an hour, Ray and I were taken to a room so I could change into a johnnie for the procedure (johnnie stories to follow at a later date). I was just changing when the GI doctor showed up and said he just looked at the blood work from Wednesday and my numbers were coming down and I didn’t need the procedure. Ray and I were dumbfounded. We said we just want things in order for the clincial trial. He said, let’s do another liver panel blood test. If the numbers are up, we’ll do the procedure later today. If not, you won’t have the procedure. An hour and a half later a nurse came to us and told us my numbers were almost back to normal and I would not need the procedure!!! YAHOO!!!!

While we were waiting for the blood test results we had the opportunity to visit my anesthesia friends. Their office is on the same floor as GI area. Saw a few familiar faces. It was nice just visiting with them. Doctor that was going to do my anesthesia stopped by the room and visited with us too. It was just nice seeing people I worked with from HAA.

Ray and I went to IHOP for breakfast and celebrated. I texted the kids and Diane. Diane let everyone in the family know the good news. It wasn’t even a thought that the procedure would be canceled. It was crazy, but fabulous news! It meant I had no blockage which was big. Having blockage can cause all kinds of headaches down the road, so it was a very good thing.

Ray and I are headed to Mass General on Thursday 4/16/15 for the results of the biopsy. Hoping and praying that they found the gene mutation and that I’ll be able to get into the clincial trial. Meanwhile, I’m enjoying finally feeling better. It’s been a long two weeks.

Kitchen is almost done. We’re using it. Lost the 3 day Easter weekend. Some finishing touches on the backsplash and painting to be done and we’ll be there. I’ll post a picture when it’s all done.

Love to all. Thanks for all the prayers and positive thoughts. They are helping me. You all give me my strength to fight this battle.

Unfortunately, the test that was done awhile ago that found that FGFR2 mutation is not acceptable for the clinical trial. It was a new test that is currently in research. I will have to have another biopsy so that can test it the acceptable way for the clinical trial. Let’s hope and pray that they find the FGFR2 mutation as that is mandatory to be considered for the trial.

I’ll go to Mass General for this biopsy. They’ll be calling soon with the date and time.

Yesterday I had my last chemo for a while. I requested removal of the cisplatin so I feel pretty good today. Ray and I are going to join in the St. Pat’s celebrations today at Pappy’s and the Prospect. Will meet up with some family at Pappy’s and friends at Prospect. Looking forward to a good day.

Kitchen backsplash is in. Bruce and Ray hope to get started on putting it up on Sunday. Can’t wait to see it up. According to Ray it is a process and as different things are done, there is a 24 hour wait period for things to set. So it’ll be a while before it’s done.

Julie will be home on Wednesday! Can’t wait to see her and spend some time with my wonderful daughter!

Maybe the snow will stop by then! LOL! Hopefully by our beach vacation July 4th!

You are my strength! Thanks for all your prayers and support! Love to all!

Ray and I went to Boston Wednesday and met with Dr. Zhu and his APRN Michelle. They gave us a lot of information that we needed to digest and think about. Today I notified them that I want to do the clinical trial.

First of all Dr. Zhu did not want me staying on the cisplatin. This is the drug that caused my hearing loss. He was very concerned about further toxic reaction to the drug. So I had chemo today and only had the gemzar. So it didn’t take as long.

Today was my last chemo for a while. One of the requirements of the trial is that I don’t have chemo for at least 4 weeks. It’ll take at least 6 weeks to start on the trial. In the meantime, I need to go to Mass General for a lot of testing, i.e., physical exam, blood and urine work, EKG, ECHO, vision test, etc. Passing all these tests is necessary to be accepted in the trial.

The clinical trial is for a drug that specifically attacks the gene mutation that was found in my cancer. This is my chance to have a longer survival rate from this deadly cancer. If it doesn’t work, I can go back on the chemo that I’ve been taking for the last 10 months.

Ray and I will be back and forth to Boston a lot over the next several months as they monitor me very closely in the beginning and at least once a month after all is considered to be going well. They take CT scans every 8 weeks as opposed to every 3 months to see how the drug is working.

Hoping that I get accepted into the trial and have good results with this new part of my journey.

As always, thanks to everyone for their continued prayers and support. Love you all!