Wednesday, August 19, 2009



John isn’t feeling good at all today. The lack of prednisone is really taking a toll on his body. I took his temp, no temp, took his pressure, pressure is good, whew! I was worried he may have an infection. You never know, which scares me to death. I would hate to see John have to try and fight and infection. He had breakfast and decided he was going to hang in today. He was supposed to have breakfast with an old friend, but he just didn’t feel well enough. He checked on his items for sale on Craig’s List and was happy to see people are responding and buying. He is trying to sell a canoe and our patio set right now, too funny, my Craig’s List Wheeler and Dealer. He actually is meeting with a guy today for the canoe, he said he seemed pretty interested, we shall see.
His friend Jeff stopped by. John is always welcome and happy to see him. He is a really good friend, calls John everyday, no matter how much he has on his plate, he is always there. Makes John happy to see him, you can just see it on his face, warms my heart to see him that way.

I hate leaving for work on afternoons that John is not feeling great. I get worried. Jeff was still there when I left, he was going to be there for another hour, and then the guy was coming to look at the canoe; I will try calling John now to see how he is doing. I need to know….it will drive me crazy sitting here so far away from him….

Monday and Tuesday

Monday and Tuesday

Monday, was a pretty good day for John. This was his last day of the prednisone.
He decided he was going to go grocery shopping. I was a little worried since John is not really suppose to be in crowded places, but I figured it was so hot out that I am sure people wouldn’t be congregated in a market. He did the grocery shopping and the proceeded to make dinner when he got home. For the life of me I can’t remember what he made…I am sure it was good! John is becoming quite the chef!


First day off of the prednisone….John not feeling so good today, decided to stay in.
It was too hot out anyway. He pretty much slept for the day, lack of energy due to being off of the 120mg of prednisone. He did make dinner, pasta and beans and chicken on the bone! Yummy! It really was good, very impressed with John’s cooking skills.

Tuesday, August 18, 2009

Saturday and Sunday

Saturday Night

Our friend Dot came over Saturday night, I wasn’t sure John was going to be awake or not, he said he was tired, but ok to sit and chat with Dot. Dot is always good for a few laughs, and that we did. It makes me happy to see John happy. She brought him a tiny little blueberry pie and a cup of ice cream…literally a cup of ice cream (she is too funny).
John decided he was going to save it for later (which means tomorrow). Dot stayed until at least 11:30. We went to bed around 12.

Sunday Funday!

We always try to have a “Sunday Funday”, this Sunday was truly a Sunday Funday.
Our friend Luann has an annual beach party at Scarborough South Beach, we have gone every year, and John was determined to go. I think he may have been a little hesitant at first, but then figured he would go and if he didn’t feel good we could just go home.
I got our beach bag together, loaded up a few towels, (not that we would need them, but you never know), the cooler and can’t forget the sunscreen. I decided I was going to enjoy a few beers that day, I have done that in awhile, I feel bad drinking in front of John. We would always enjoy a few beers at the beach, not too much, just enough to enjoy.
Off to the liquor store we go. Before leaving for the liquor store John suggested I use the beer that was in the fridge, yes, I could have done that. However, I wanted to keep that in there incase someone dropped by and wanted a beer. Wrong move on my part! The switch was flicked and out came Prednisone Pete, oh boy, here we go. We get to the liquor store, I go in, get myself some beer, John 2 sodas and water, he brought 2 waters with him to start. I was in a panic, confused, I don’t know what I was, but I forgot to get ice in the liquor store. I said I am not going back in there; I will just go to 7/11 next door and get a bag (it is cheaper there anyway). Oh Dear God it was like I just pulled out the last piece of hair on John’s head. The swearing that came out of his mouth, I can’t even repeat, of how much !@#$ time it is going to take to get to the beach, never mind we have to drop off Oliver at my sisters house. Poor Oliver, always gets caught in the crossfire, he is clueless of what is going on. Thru John’s eyes that moment, Oliver was the biggest pain in the ass, why do you have to drop him off this is so @#$% stupid, etc, etc. You get the jest of the outburst. I just closed my eyes, took a deep breath and was silent the entire ride to my sister’s house. Dropped Oliver off to play with his cousin Sydney and then off to the beach party. Please keep in mind my sister lives right off of 1A, which brings you where??? Right to the beach, hence the trip to drop off the dog wasn’t out of the way.
We got to the beach at around 2ish, and of course the beach was beyond packed. They were not letting any cars in the main entrance. John and I drove around for a good 15 minutes before we went back to the main entrance so we could park on the grass.
Once we got into the beach parking lot and got to the party, things were fine. The switched flicked back to John and we had a great time. So good to see him among friends, laughing, talking, he even had a beer! I am not sure if it was an entire beer, but 1 beer. With a water to chase it, had to do that, John can’t afford to get dehydrated. We really had a good time; it was nice to get out and about together. A few people approached John, and there of course was the silent moment of not knowing what to say, but eventually the conversation starts and everything is ok. Everyone truly likes John, some people I would even say love him…I know I do….

Monday, August 17, 2009

Weekend of August 14th

Great weekend! It looks like John is in "clinical remission" and boy does it show. He got up on Saturday morning ready to go! He didn't know where or what he was going to do, but he was going to do something. John felt he wasn't feeling well enough to drive, so he would need to find someone who would be around and wanted to do something. Shock, he ended up with my sister (they have totally bonded! LOL!Friday are usually "their" days, this weekend it happen to be Saturday) My sister came by and picked up John, well, she drove his truck to his brother-in-laws landscaping business, John had cut some wood last year and stored it in one of the vacant lots where the landscaping business is. He decided to go and pick up some wood for her and shrink wrap some wood for himself to sell on Craig's list (oh Craig's list...that is an entirely different blog). They picked a load of wood, drove it back to my sister's house, dropped it off, and then stack it in her backyard behind her shed.
I almost lost it when I heard this, John is not suppose to be in the sun for one or getting hurt! John swore to me all he did was supervise, which my sister did confirm, whew!
He really had a full day, and loved every minute of it. It made him so happy to be out and doing something, and something he likes to do. This makes me happy to see him this way, you can see it in his face and in his body language, just to be out and about with people, doing normal things.
I prayer to whatever God will listen to me, please let John be disease free....that is my wish for him...

Saturday, August 15, 2009

Thursday, Aug. 13th Chemo and Doctor Visit

Today is John's 5th treatment of chemo. I can't even believe he is already on his 5th treatment, never mind that he has to have chemo treatment at all. Unbelievable. Still til this day I think to myself, why? what? is this for real. Everything for John and I was flipped upside down. I think and tell John if there is something you want or want to do, go and get it and go and do it!

John started his treatment as normal, the doctor came in to discuss with John his CT scan results and what in store for him. John and I had a list of questions for the doctor;
1) Cuts and scrapes on leg ok? Doctor stated they are fine. They look like they healing properly, no infection.
2) Lovenox (shot in the stomach) John wanted to know if there was a substitute for the shot. There are pills that John could take, however, they would have to test John's blood 2-3 times the first week he was on them in order to regulate the dosage he would need to take. Once this is regulated John would still need to have his blood done every week while he was on the pills. John decided to stay with the shots once a day for the next 3 months.
3) CT Scan
A) Quest on cyst. Dr. stated this is nothing to be concerned about, extremely small, normal at that.
B) Quest on lymph nodes. Not one lymph node is enlarged? Correct NO LYMPH NODES ARE ENLARGED (Sweet!)
C) Clot? There is a very small clot, it is not obstructing anything, to be on the safe side, John ordered to have the Lovenox shot done each day for the next 3 months.
D) Why did the clot occur? Dr stated it is undetermined.
4) Fingertip numbness? Dr stated it is ok, however if the numbness travels to the center of the hand to contact him.
5) Remission? Dr. stated John is radio graphically in remission. Which means the imaging does not show any disease present in John's body. Again the Dr. stated this is from a clinical standpoint, not pathological)
6) Information from CT Scan be sent to Dana Farber? The Dr. stated yes. Once all scan are completed and read he will be contacting Dana Farber. He noted to John and I he is in constant contact with renown Cancer Centers throughout the United States of America (to name a few Seattle, California and Mass)
7) Prednisone? All the side effects John described he was having are ok.

Once final treatment is done, John will have to wait 2 wks and then go for a PET Scan, if this is clear John will have the bone marrow test done. These tests will determine if there is a need for the actual bone marrow transplant. Very scary decision for John to make.I am extremely nervous about this bone marrow transplant. I have been doing research on this treatment. There is so much involved, John will be brought to the brink of death by all the chemo they will have to pump in his system in order to prepare his body for the transplant. Once the transplant is done he MUST stay in the hospital for at least,(they say online) 2 months. Once he comes home, which they suggest he stays near the hospital in which he received the transplant, he must visit the dr 2 to 3 times a week. He will not fully recover from the transplant for 1 full year. No ifs ands or buts about it. John's immune system will be almost nothing. He pretty much will be confined to the house. I am so confused and worried for him....

Wednesday, August 12, 2009


Yesterday was like John wasn't sick at all. I absolutely love these days. He went to lunch with his friend Jeff and after lunch they decided to go fishing. Wow! John must have been in his glory.
He was out, with his friend, fishing, just like the good old days. John gets home around 3ish to greet me with a knee full of scrapes! Yikes! John! Not good. John is on a blood-thinner now, in addition to his regular meds. The main thing is John is suppose to be extremely cautious not to get any infection of any kind. I am in a little bit of a panic now, scared his cuts may get infected.
I cleaned it as much as he would allow me to (of course it hurt), I put some antibacterial ointment on it and crossed my fingers.
I know John wants to act and be as normal as possible, but he needs to keep in mind, he cannot get any type of infection. This could be bad.
I hate the days before treatment, because he really does act normal, like he is not sick at all. Can do things just like he did before he got sick. Then treatment day comes and knocks him down a few pegs, not too bad, but bad enough where he gets tired quicker, doesn't feel like he can do much. By the time day 4 after treatment comes, he is exhausted by everything he does.
Day 5, he knows, no more prednisone, not comes "Withdrawal Will" (as you can see I am not a big fan of "Will", he is mean! I keep on having to tell myself, "John is still in there somewhere, he should be back in a couple of days"
This sickness has changed our lives in so many ways, it makes you look at things in a totally different light. You come to find out who your true friends are. Who will stick by you no matter what. Family, can't say enough...lucky to have such a great one!

Monday, August 10, 2009

The weekend...August 8th and 9th

I can't believe how John is doing, it really makes me happy to see him up and out and about.
This weekend was yet another great weekend!
Friday, John went to his sister's for the day, and ended up staying for dinner that night. I had to work, I didn't end up going. I wanted John to have some family time. I think he needed it.
He didn't come home until 10:00 pm! He had such a good time! So nice to see that smile! Fills my heart with joy for him.

Saturday, John and his brother went to my sister's house to help her put together her TV stand and hook up her brand new TV! Sweet! John was there for the entire day. Kevin drove back to his house to drop himself off and then John drove home! Yes! John is driving! He feels just that good! (we are not getting crazy, he drives short distances only)

We had another "Sunday Funday" with my sister, me, my sister and John went sofa shopping.
John did not need to use the wheelchair or anything, he walked each store we went to. Unbelievable! He did end up buying a leather sofa for the living room, really nice leather, really sharp looking, it is going to look really nice in the living room. Now we need to sell the sofa that we are using now, (by Sunday!) the new sofa is being delivered on Sunday.
John has been on Craig's List all day today, keeps him busy, and we need to get some stuff on the site to sell. We have so many things that we just don't use or we just don't have room for anymore.
John has been having his moments, I think he gets scared, and snaps at me or the dog sometimes. He does catch himself and his mood goes from snappy to happy.
It is so stressful, and tiring all at the same time trying to keep everything organized, keep the laundry going and done, keep the house clean, keep John's pills and appoints on schedule.

I will have to say, I am pleasantly surprised when dinner is ready when I get home. I am glad he has decided to take an interest in cooking. Let's just hope he stays with it.

Ha! I just got off the phone with him, asked him what he had planned for dinner, he said he wasn't really all that interested in cooking tonight...ahhhhh.....soooo soon....he is already starting to lose interest!?! I hope not...

Friday, August 7, 2009


I have to sit and wonder to myself, what people are truly thinking.
John calls his doctor this morning (9:30 ish) to discuss his test results and to discuss what happen the night before in regards to leaving a message like that on some one's answering machine, and why wasn't a phone call made to his cell phone.
John gets in touch with his nurse, he explains what he encountered, and of course he gets the "I'm sorry". Sorry doesn't cut it sister. This is someones life you are dealing with. This is not a !@$ game! She tells John to tell me not to give him the shot, she wants to be sure that is what he is suppose to be getting. Again, are you !@#$% kidding me?! He was told via ANS MACHINE that was the drug that was to be administer and again at the hospital last night. COME ON!
John asks to speak with his doctor and of course, he is not available. She will leave a message for him to call him back. She will have to call him back too, she needs to confirm the medication.
It is 12:15 pm, I am leaving for work and suggest to John to call the Fain Center again, he can't wait on this shot. I go to work and get a phone call at 2:30 pm from John, he spoke to a different nurse who told John the doctor apologizes, he can't come to the phone, but your CT Scan is great and he is going in the right direction. WHAT?! The nurse asked John if he took his shot, he told her, no. Jenn (John's nurse) told him not to, she needed to confirm that was the right medication. The nurse on the phone comps and attitude with John and tells him he needs to take his shot before it gets to late in the day. He needs to take 2 shots, 12 hours apart. John is furious. Can't say that I blame him. YOU HAVE CANCER, YOUR DOCTOR HAS YOUR CT SCAN RESULTS THAT ARE SUPER IMPORTANT, AND YOU DON'T HAVE TIME TO COME TO THE PHONE?! Not good. John has 2 more chemo treatments left. John needs 2 treatments and then another scan. John really needs to get a new doc and have his results sent to Dr. Jacobsen at Dana Farber.
I just got off the phone with John, he is on his way to Gina's house to search for a new doctor.
This is getting out of hand...John shouldn't have to deal with this. Isn't it bad enough he has this horrible disease!? ...I hate this...

CT Scan

John went for his CT Scan yesterday, this was a very important day. This scan is going to tell us if the cancer has spread to any other part of his body. He went to have the test done at 12:30 pm, after the test was done John went to the Fain Ctr for blood work and to speak with his doctor about the test results (or so we thought). We arrive at the Fain Center at 2:20 pm, his sister Gina met us there, (6 sets of eyes and ears are better than 4). John checks in with his nurse and proceeds to get his blood work done,Gina and I wait in the waiting room, about 15 minutes goes by and John is coming down the hall with a disappointing face, my heart sinks. John tells Gina and me that he did not get his results, it was just blood work today, a miscommunication in the dates and times. Odd. I could have sworn it was said, by whom I am not sure, that John would have his test results the same day of the testing. John's nurse told him he would not have the results for another 2 days. Not good. The waiting is the worst, especially with something of this nature. John, Gina and I leave the hospital and tell ourselves tomorrow is another day, we will call the doctor then to try and get the results.
John and I decided it is still early in the afternoon, we can run some errands and go pick Oliver at my sister's. We run all of our errands, grab something to eat and go to my sister's to pick up Oliver. We come home and there is a message on the ans machine "John, this is Sharon from the Fain Center, the CT Scan showed a blot clot in one of your veins, you need to come back to the Fain Center so we can administer Lovenox. WHAT?!?
First of all why in the world would you leave a message like that on an ans machine?!
John and I don't know what do to, we are in a panic. I call the Emergency Call Center (yeah right!), never get a nurse or a doctor the first phone call. Always have to wait. Yeah, NOT THIS TIME. I called once, no response in a 1/2 hr, called again until I got someone on the phone. Of course, the nurse tells John, get to the hospital ASAP! Off the the hospital we go, 9:00PM. Get to the ER, the nurse already knows John CANNOT wait in the ER - NEVER MIND SWINE FLU PEOPLE!! HELLO John's IMMUNE SYSTEM IS AT AN ALL TIME LOW!!! The registering nurse was a bitch, thank god for the nurse that was sitting there and had already spoke to John. We get into a room, wait 5 HOURS!!! Before a doctor comes in. John explains the events that occurred that day, and asked the doctor to get the CT results, which she did. They are clean? Who can read that test, besides a doctor? The doctor explained John would have to speak to his doctor about the results. He does have a minor clot in his groin area. He would have to get a shot in his belly 2X's a day for the next 5 days. Seriously!? What in the world is going on?!? It seems like the left doesn't know what the right is doing. It really looks very unprofessional. We are disgusted at this point. To add to this debacle, I notice at the bottom of the typed report, the nurses name...Sharon, Fain Center, time: 2:20 PM. ARE YOU !@#$% KIDDING ME?! WE WERE AT THE FAIN CENTER AT 2:20 PM! Come on, this isn't right. We are furious to say the least. Didn't go to bed until 1:30 a.m.

Wednesday, August 5, 2009

Prednisone, friend or foe?

John has been off of his Prednisone for two days now. He went from 120 mg to 0.
Day one (Monday) was ok, not too bad, mood swings were definitely there, but not as bad as day two (Tuesday).

Day two, started off pretty good, and then went downhill. It is really hard to tell and to say when the "horns" are going to start to come out of John's head.
I had to work all day yesterday, I spoke with him a few times, the few times I did speak with him he sounded fine. He drove yesterday! YEAH! He went to lunch with his Mom and then went to her house for a little bit, picked up some recipe books from her so he can start to really cook.
That is his new He seems to really be interested in it.

When I came home from work last night he was making steak, mashed potatoes and a wine/mushroom sauce, it looked delicious. And then..."Withdrawal Will" came was just a matter of time.
John went out back to start the gas grill, and of course, there was only a little bit of gas left. Now the "Storm of Withdrawal Will" has set in. The yelling of "WHY ISN'T THERE ANY GAS IN THE GRILL!" "WHY DIDN'T YOU TELL ME?"
(like that is what I do on a daily basis is check on the gas in the gas grill)
I took a deep breath, walked back in the house and closed the door.
He proceeds to follow me in the house and finish the steaks on the stove, which was fine, they tasted just as good, the sauce was fine, the potatoes were fine, everything was fine....not to John. He just thought dinner was ruined because he had to finish the steaks on the stove, let's not even get started on the wine/mushroom sauce...the emotion switch flicks back up....and John is back "Withdrawal Will" is gone, but just for a moment...don't blink Cathie, he could come's only a matter of time.....

And that was dinner on Tuesday.

Symptoms of Withdrawal From Prednisone
Prednisone withdrawal symptoms can include but are not limited to:

A general ill feeling
Muscle weakness
Nausea and vomiting
A fever
Low blood pressure (hypotension)
Mental changes
Muscle pain or joint pain
Flaky or peeling skin
Difficulty breathing
Loss of appetite.

Tuesday, August 4, 2009

John is going to drive today!

I just got off the phone with John (for the 3rd time this morning), he is going to drive!
I am so happy for him. He has been going crazy just sitting around the house.
He checked his blood pressure and heart rate this morning, they were both good. He said his energy level today is at an all time high. I told him that is great - however, don't get crazy.
He said all he is going to do is go to his Mom's (she only lives like 3 blocks from our house), and then go to Border's Books, in Garden City. Again, not that far from our house, and he will be with his Mom. Whew!

I can hear the excitement in his voice, he can't wait to get out and drive his truck. I know he misses driving so much. I am so happy for him!

Monday, August 3, 2009

The weekend after chemo treatment...

John is getting better with each chemo treatment. This past weekend was yet another great weekend! :0) Friday I worked until 7pm and got home to a surprise dinner! John made chicken pittaca, it was so good, I was so happy to see him happy and to be able to do something. I know he must feel guilty at timeshe wants to do something, anything, even fix something stupid in the house, but he can't because his energy level is so low. Any hew, dinner was great!
HE EVEN CLEANED UP!!! We watched a movie together, did our usual flushing of his pic lines, and went to bed. Great night!
Saturday morning John decided he was going to go to his friend Gary's house. Gary was working in his yard, John said he was just going to watch. I was a little hesitant in him going, I know John he can't sit still, he will want to help Gary with whatever he is doing. I dropped him off at Gary's around 11ish, I went home and cleaned the house. This worked out great I can actually "clean-clean". It is hard when John is at home and I am trying to work around him with the vacuum cleaner and Windex (lol). I feel bad having to ask him to move all the time. I called John at around 2:30 ish to see how he was doing, he said he was good and he was ready to be picked up. We had his niece's birthday to go to at 4pm that afternoon. I was a little concerned John had exerted all of his energy at Gary's. I picked him up and took him home to get ready for the party, he seemed pretty good. We went to the party for 4, I think he was a little nervous, Kevin's (John's brother) in-laws would be at the party and other family and friends. I am sure it must be hard walking into a back-yard filled with people and them all staring at you wondering if you are ok, etc. It was good. John had to explain a few times to different people his condition and treatment. He appeared to be ok. I felt bad. Thank God for his family, they truly are great people! They make the hard road so much easier to face. We left around 8 pm
(I know, long day for John).
I decided on Friday I was ready to go out with my friends on Saturday night. It took everything I had inside of me to do so. I felt horrible leaving him, I wanted him to be able to come with me . I had a good time going out and meeting my friends, but I can't lie, it just wasn't them same without him by my side. Every time someone asked about him, I felt a big lump in my throat, I just wanted to break down and cry. I held my tears back until I got in my car to drive home. I couldn't get there quick enough and see him. When I finally got home, it seemed like I was never going to get there. I got inside and found him fast asleep in bed with Oliver, he looked so two angels asleep...