Friday, July 31, 2009

Thursday, Chemo treatment day

Yesterday John had chemo and spoke with his doctor, Dr. Castillo. I am so relieved John got to speak with the doctor face to face. The discussion was full of information on John's progress to date and what the days ahead hold for him. John asked all the right questions. The main question for that day was why wasn't John told about the bone marrow transplant earlier.
I had told John after our visit to Dana Farber, he has to give Dr. Castillo a fair chance. Keep in mind Dr. Castillo pretty much resurrected John from the brinks of death! Don't fly off the handle at Dr. Castillo for not telling you about the transplant, I am sure he has a good reason for doing that. Sure enough, Dr. Castillo is just what I suspected, a step by step personality. He told John, he would never lie to him, he would be very up front with John on his condition and what steps would be taken after each treatment. Which he has. He didn't want to get John all stressed out in the beginning (more than he already is) by tossing in "you may need a bone marrow transplant" John would be worried and stressed throughout the entire treatment process. It is bad enough what he has to deal with now. Dr. Castillo told John he is not receiving the same CHOP (chemo) treatment as everyone else who is being treated for Cancer. He has one more drug which is included in his CHOP. It appears by the test results John is improving with each treatment. All of John's platelets are just where they should be including all his all levels,and all of his organs are working just as they should be...whew! I almost forgot...John's blood level was an 11!!!! Are you kidding?!?!? EXCELLENT!
Dr. Castillo did explain the pros and cons of the transplant procedure. His plans for John are as follows; he will be getting a PET scan done next week. He needs to be sure the chemo treatment today is going to be doing it's job for an entire week and then the scan will be done. This scan will provide an abnormalities in his body. He will continue his chemo treatment until all 6 cycles are complete. Once the entire 6 cycles have been completed, John will have another PET Scan and a bone marrow test. IF, If all these test come back super, I am saying C-L-E-A-N, John has to make a very big decision to make. Do the bone marrow transplant or not do to the transplant?The doctor was leaning more towards if the test was CLEAN. John may not need to have the bone marrow transplant done. He would continue to see Dr. Castillo and be tested every 1-2 months. To be sure the cancer does NOT come back. This is a very serious and difficult decision to make. I am 100% by John's side, no matter what decision he makes. I love him and always will, no matter what is ahead of us, good or bad, I will be there to hold his hand and fight the good fight.

I send God my prayers today and everyday...I can only hope he has been listening....

Wednesday, July 29, 2009

Dana Farber

John had an appointment at Dana Farber for a second opinion yesterday. Me, John and his sister went. Thank God to have a second pair of eyes and ears, besides John and me. Everyone knows once you enter a doctors office it is like sitting taking and exam. Every question or thought you had goes right out the window.

John met with this very informative doctor, Dr. Jacobsen is his name. He really shed light on the type of cancer John has and how it is being treated and why. I asked the doctor if he felt that his finding and the findings of Miriam Hospital were similar or the same. He said that his findings and the findings of Miriam Hospital are the same. However, this doctor sprung a bit of information on us that we were not prepared for. He told John yesterday he is going to need a bone marrow transplant. Dear Lord, what? I think that our mouths just dropped open. What? What? The doctor proceeded to explain: John would be treated with chemo 2x's a day, for 4 consecutive days. These large doses of chemotherapy and/or radiation are required to destroy the abnormal stem cells and abnormal blood cells. These therapies, however, not only kill the abnormal cells but can destroy normal cells found in the bone marrow as well. Similarly, aggressive chemotherapy used to treat some lymphomas and other cancers can destroy healthy bone marrow. A bone marrow transplant enables physicians to treat these diseases with aggressive chemotherapy and/or radiation by allowing replacement of the diseased or damaged bone marrow after the chemotherapy/radiation treatment. While bone marrow transplants do not provide 100 percent assurance that the disease will not recur, a transplant can increase the likelihood of a cure or at least prolong the period of disease-free survival for many patients.

John would need to be in the hospital at Dana Farber for 3 weeks!
There was so much information to absorb, so much to think about all in one day.
This procedure for John as not an option, he would need to have this transplant done.
Very scary. So many things were twirling around in my mind, a lot of "what if" What if it doesn't work? What if something goes wrong? The ride home was full of of questions, all so much to wrap my head around. I just wanted to get home with John and talk to him and see how he really felt. I know he must be scared, I am scared for him. I am sure he is so over this disease already. And again, why him? Why him? Out of all the people, why him? Life is just so unfair. My Mom would always say "God only gives you as much as you can handle" Really? I can say for myself, I have had my share, I don't want or need anymore tragedy in my life. Enough!
My poor John, I really hope this treatment does it's magic and makes this freakin' cancer GO AWAY! Tomorrow, chemo treatment, and PET SCAN. We will definately be having a conversation with his present doctor. Dr. Castillo. I want to know why we were never informed about this bone marrow transplant, and why wasn't there a meeting set up to discuss John's options after he completed his treatments? Very frustrating for John and for me. I am hoping tomrrow is a good day, please Lord, let it be a good day.

I miss JohnnyP. I get glimpses of him here and there, some days I forget he is sick....and then I wake up. My heart aches for him...I am angry for him....I love him so...please let him get get better....I miss him....

Monday, July 27, 2009

This past weekend...

What a great weekend we had! It was just like John didn't even have this horrible disease.
My sister, John, myself and our friend Dot took a ride to Jamestown. My sister's favorite getaway. She wanted to show John her favorite places that she goes to "getaway". We had lunch at Trattoria Simpatico, what a great place to sit outside and have lunch, or even just to sit and people watch.After lunch we went took "The Chris Warren Tour Of Jamestown". We went to Beavertail, Fort Wetheral (sp?), we went sight seeing thru the neighborhoods of Jamestown, it was really a fun day.
I know it made John feel good, I could see it in his eyes, those big beautiful brown eyes! Filled with joy for the day, it made my heart feel good to see him like that...I wish everyday could be like that...

Friday, July 24, 2009


John has had yet another good week! He really does look good considering what he has been going thru. I think the chemo is doing it's job. He went for blood work yesterday, he has to go every week to see what his count is. He has had so much trouble keeping it to where it should be. He contacted the doctor's office this morning it is a 9.6! I know it sounds crazy that we get so excited he is at a 9.6. The normal count should be 12-14.

Gina (his sister) and his Mom stopped by this morning and their way back from his Mom's PT session. He had some breakfast, we chatted for a bit, Dana Farber called to confirm his appointment on Tues, the 28th. We can't wait to go, we need some concrete answers on John's condition. This will be John's second opinion and what steps should be taken, meaning should he continue on with Miriam and his doctor's at that facility or go with Dana Farber.

Gina and Carol (his Mom) had to go, Gina had to go pick up Steven (John's nephew). They left and I had to leave myself to go to work.

My sister called last night, she may stop by. John said he may go to his sister's, he wasn't sure.

I will check in today with him at least two to three times, can never be sure sure...I am always at ease when I hear his voice...

Day after fishing...

I took the day off yesterday to spend with John, I like to see him having something to do each day. I thought maybe if he was feeling up to it we could go for a ride, maybe go to the Christmas Tree shop, pick up an ottoman for our friend Dot (that is an entirely different story for a different day). He woke up in a pretty good state of mind yesterday, he said he was having little aches and pains here and there, he thinks it was all the fun he had fishing the day before. Which would make sense, since he really hadn't done anything physical for weeks. He decided he would rather stay in then go out, maybe take a little cat nap. I decided to catch up on some cleaning and maybe go to the store get a few things. He said that was fine, I think he was at ease that I was going to be around and at home with him. I don't mind in the least, I would do anything for him, anything! We watched some TV together for a little bit, I went to the store for an hour or so, came back and made some dinner. Then we did our normal routine, flush his lines, take his vitals, once that is done he is usually ready for snack time! Too funny, he is hooked on sherbet now, and frozen yogurt. All in all he had a pretty good night.

Wednesday, July 22, 2009

Fishing today...

My sister is coming over today to take him fishing, John's favorite. I could see it in his face this morning he was excited, but holding back a little bit, I feel he is still unsure of how or what is going to happen once he is out and about. I feel more at ease when he is with someone, especially someone who would do absolutely anything for sister being one of those people. She is truly a good soul.I am at work now, I will check in with him a little later to be sure he is ok, which I am sure he will be fine, but it makes me feel better just to hear his voice and know he is ok.

Today has been one week since treatment on 7/16/09

I didn't post anything yesterday, I will post it today.

It has been one full week since John received his chemo treatment.
This so called miracle drug has now been in his system, hopefully doing it's job, which it "appears" to be.

John's day started off pretty rocky, he knew he was to be weened off of the prednizone (another miracle drug), he would be going from 12o m to 20 m, this could be dangerous from all aspects. John contacts the Fain Center where his doctor and nurse are. They are pretty certain in their instructions, take 20 m once a day for the next week. John follows his instructions with hesitation, he doesn't know what is going what kind of reaction his body is going to have to this drastic change in medication. Anyone who knows someone who has ever taken prednizone, it is a strong medication.

I proceed to go to work after John eats his breakfast, we pretty much have the same routine now. I leave for work thinking I hope everything is going to be ok. I will be sure to call him once I get to work just to be sure he is ok. I need to hear the sound of his voice, how it sounds, I can usually can tell how he feels just by the tone of his voice. Always have, ever since I have known him. The tone of his voice sounded discouraged. I know he is getting very bored. He wants to go out and be able to drive, but I think he is still unsure of himself and afraid to take the chance.
He tries to keep himself busy, the best he knows how. He has been doing these word search puzzles, they are all over the house, each with a pen stuck in the page he was working on.
He has moved on to playing solitaire on the computer, which is good at least it keeps his mind busy. He told me he was feeling pretty good, Claudia had stopped by with some dinner for him (one of his favorites-chicken parm!). He was "pumped" as he would say. I asked him if he wanted me to pick anything up on the way home from work, he said he was good.

I walk in the door from work and get my usual greeting from the best dog ever! Oliver! Daddy's little buddy! John is still playing solitaire on the computer. He had started boiling a pot of water for some maccaroni to go with the chicken parm. I make the maccaroni, put it in a bowl, heat up the chicken parm and then here it comes..."the prednizone swing" (I have named it that). John comes over to the counter looking down at the bowl of maccaroni and plate of chicken parm with a question "where is the gravy?" "NO GRAVY! OH COME ON! " At that time in his mind dinner was ruined. He takes his plate and sits down on the couch and starts swishing around the maccaroni on his plate around the chicken parm, not good. Picks up his plate and comes to the counter, slams the plate down, digs around in the chicken parm dish for some cheese, throws a piece of cheese onto his portion of chicken parm, throws the plate into the microwave and asks me "WHY COULDN'T YOU HAVE DONE THAT!" I look in a daze...what? Then I think to myself...PREDNIZONE, here is the mood swing from the lack of the prednizone. I count to ten, turn away from the counter, turn back around and by that time John is back on the couch with his plate. I get my plate ready and walk over to sit with him to have dinner. "John" is back now, his evil prednizone twin has left. The mood has become almost jovil. He is now asking how my day was, what went on at work, etc. And that was dinner....

The evening is pretty much a normal evening. After dinner, I flush his lines out, (he has a pic line ) take his temp, and vitals. His vitals have been pretty consistant, there have been one or two days they have been off, but all in all they have been great.

We usually will watch some TV together until one of his favorite shows comes on, which of course is not one of mine. I always move to the bedroom, it is the norm for us. I have been falling asleep pretty early, I try to stay awake for as long as possible, doesn't always work out in my favor. John has been coming to bed a little late, this night in particular he took a shower and came to bed around midnight and slept thru the night (even over the dog wanting to go out at 2:00 a.m! Oliver!)

The Diagnosis...

I am writing my thoughts and feelings about John and the journey ahead…

John was diagnosed in June with this horrible disease called T-Cell lymphoma, and Epstein Barr. I can’t believe it has already been two months. I wake up everyday thinking this has all been a nightmare, John is fine, and everything is normal.
My thoughts are so jumbled, each day is so different. John could be having a great morning, which could turn into a great day. I love the great days! However tomorrow is always right around the corner and you never know what tomorrow is going to bring.
When the good days are good, they are even great. When the bad days are bad, they are just the worst. On the bad days, I try to hold back my tears, I don’t want to shed them in front of him, then I think to myself I hope he doesn’t think I don’t care. That is not the case at all. I hold back my tears and take them with me to the shower, in the basement or in the car. These are the places where I release my tears which are filled with hurt and anger for John. I can’t bear the thought of him thinking this is a burden on me or anyone. I know that is how he feels at times. It is just the way John is.

I can honestly say I care more for this man than I have ever cared for any other man in my life. He has enriched my life in so many ways I feel I just can’t do enough for him.
I wish I had the cure to end this nightmare for John and for everyone else who has been inflicted with this horrible disease. I don’t know why John has this disease he doesn’t deserve it. No one does.

John is truly a good hearted soul. So full of compassion and thoughtfulness, his smile so infectious, just fills your heart. The love his family has for him is immeasurable, he is truly blessed. I am so thankful for the love and the generosity it makes things almost easy enough to bear, no matter how hard this road is going to get for us, we can hit the bumps and get over all of them.

"There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow."