Day 737 Sunday January 1st, 2006

Another glass of Champagne, maybe a mixed drink ... how about another appetizer ... oh how I wish.
The only New Years Eve decision we had was wether we were going to honor James' request to bring him to the hosptial. Halfway through the 40 Year-Old Virgin James broke down, apparently he had been trying to ignore/hide the pain all afternoon, I was blinded by his optimism and mistakenly thought things were going well. As much as James dislikes being in the hospital he felt it was the only way to find relief, after much discussion I was able to convince him that we could make things work here at home and to give it one more day.

After getting James comfortable he actually slept through the night. He woke up, had some breakfast, his meds ... seemed ok. I got him out of the house for a little window shopping at BestBuy ... hmmm ... maybe, just maybe ... We actually did have some appetizers .. watched some football, then a movie ... Bing Bang Boom and its midnight and he's off to bed. Wow ... a good day and a Great Start to the New Year !!

Day 738 Monday January 2nd, 2006

Not a great day but no "mini emergencies" so we are thankful for that. Besides his pain he feels "yukky", I'm not sure if its a cold, although he has no cold type symptoms, or maybe his counts are dropping. We are getting very anxious to get his treatments started, his back pain has always been a good indicator as to increased "cancer activity", and its been 7 weeks since his last chemo. Its continues to be frustrating dealing with the oncology group here, you just can't get a commit or schedule, you have to hound and hound to get things setup ...

James' "Breakfast"

Day 739 Tuesday January 3rd, 2006

James had his labs done today and the results seemed to confirm what we had thought. His Hgb is at an all time low (7.3) so he is Anemic, this most certianly is the reason for him feeling lousy. According to the Doc, the Anemia is probably due to inflammation from the tumor, which is the likely culprit of his increased back pain. The only other test that is bothersome is his creatinine, this is now in the range were it was back in 2004 prior to having the Stent placed. My emails questioning this test are still unanswered.

James is scheduled for a blood transfusion at 10:00am on Wednesday, this will probably take 6-8 hrs. He starts his chemo at noon and Thursday.

Day 740 Wednesday January 4th, 2006

James was home from his blood transfusion at 4:30 and was already feeling better. With his counts as low as they were, I won't be surprised is he needs another transfusion early next week. Starting this Friday, James will be getting EPO (Epogen) shots 3 times a week to further help his Anemia problem. The Docs seem to be concerned about the poor results from his kidney function test, especially in light of his low Hgb, and have ordered additional testing.

More info on Anemia, Kindey disease and EPO :

The amount of red blood cells your body makes depends on a hormone called erythropoietin (pronounced e-rith-ro-poy-e-tin). Your kidneys make erythropoietin. Erythropoietin travels to the bone marrow, where it tells the bone marrow to make red blood cells. Usually, the kidneys of people with chronic kidney failure can’t produce enough erythropoietin. Without sufficient erythropoietin, your red blood cell level drops and you get anemia. EPOGEN® is a drug that helps correct anemia in chronic kidney disease patients on dialysis. It works just like the erythropoietin that healthy kidneys make.

Day 741 Thursday January 5th, 2006

Wow, it was a tough day for the Pettine family. James started his new chemotherapy, a drug called Gemcitabine. This was to be infused through his new port, which he had placed during surgery last Thursday. The Tegaderm, a water proof dressing (similar to seran wrap) that the surgeon placed over the 2" long incision was still in place and needed to come off so we could access the port. James' skin doesn't get along with Tegaderm very well and the 2" x 2" patch had become one with his skin. The process of removing it was very painful and caused lots of tears and frustration. One after another, two different nurses and a doctor came in with their "I've got a trick that will take that off" method, each one leaving saying the same thing "I've never seen anything like this ??". It was not a great start to the day.

Once the Tegaderm was removed things went much better. The new port was easily accessed and worked perfectly, the 90 min. chemo infusion went fine. With the new port working, it was time to remove the PICC line. Although this also caused some discomfort, it was really more "freaky" than anything ... once the stiches that held it in place were removed, the nurse just started pulling it out ... a 20" white tube being pulled out of his arm ... ewew !

We got home from the hospital, James was feeling ok and decided that he would go to Aaron's basketball game. Early in the second quarter Aaron fell and hurt his left wrist, he was in obvious pain, a major bummer. After the game, Pam and James went home and Aaron and I stayed to watch the varsity play. After being in the hospital all day and then sitting in the gym for 3 hrs I was beat. The first thing I saw when I walked in the house was James laying on the couch with a wash cloth on his forehead and a thermometer in his mouth. He had a headache, fever and the chills, this is one of the "warning signs" of the chemo and we had instructions to call the doctors if this was to occur. At this point I'm thinking "great", I've got two kids needing to go to the ER, Aaron for xrays and James for chemo complications. After talking with James' doctor, we decided to keep an eye on James and wait it out, if things did not get any worse we would wait and re-check things in the morning. As far as Aaron was concerned, I "played doctor", gave him some of James' pain meds and sent him off to bed.

I'm not sure what tomorrow will bring but one thing is for sure .... I'm heading for the fridge for a cold one.

Day 741 Friday January 6th, 2006

The pain meds really helped Aaron and he was able to sleep through the night, I took him for X-rays today and they were negative, I guess we will assume that it is just a sprain.

James' fever is gone but he had another tough day ... and it only got worse. James has developed some new issues, his stomach is really hurting and he's having bladder spasms while peeing, this is on top of his back pain. With all thats happening, it's very hard to tell whats causing it. Is it the new chemo, increased disease causing yet more inflamation, a more common cold or flu ? At this stage, were going to blame the new chemo for his stomach pain and are hoping the bladder problem is associated with needing his stent replaced (another surgery we will need to schedule ASAP).

With an increase to his pain meds we were able to keep him somewhat comfortable for most of the day, at his best he was able to play on his computer for a couple of hours, otherwise he was laying in his bed trying relax. Around 6:00 he started to get very uncomfortable, this surprised me a bit as we had increased his meds and they seemed to have worked for a time this afternoon. By 7:00 he couldn't take it any more, and again wanted to go to the hosptial. I told him we could increase the meds a bit more but he wanted nothing to do with that idea. Going to the hospital for pain control really kinda sucks, its a couple of hours in the ER telling 3 different people your life story ... they don't have a good feel for his tolerance for narcotics and they start him on low doses ... its hours of misery before they admit him and hours more before he's comfortable. Once he's in ... he's in ... probably not coming home for a few days. Even after explaining this to him (read this as trying to convince him that the ER is the wrong option), he still wanted to go. One more option ... I went to our personal pharmacy and pulled out all the pain meds, we had Fentanyl patches, oral Diloted (hydromorphone) and Methadone. I asked for one more try and that we would call the doctors and ask for their help.

The doctor agreed that going to the hospital was not a great option, with our "in-home pharmacy" there was nothing available at the hospital that we couldn't do at home (ie. get him heavily medicated). We agreed that the diloted would our best bet, although it has a short life span, it was quick acting, the goal was to get him comfortable and then deal with keeping him there. (A quick reference point, for analgesic purposes, diloted is somewhere between 5 and 10 times more powerful than morphine. The "inital recommended dose" for diloted is 2mg every 3-4 hrs.) We started James with 6mg at 7:15 ... 6 more at 7:30, still no relief. At 8:30 we gave him 12mg's more, finally staring to feel better (I would hope .. 24 mg's in less than 90 mins) at 9:30 we gave him 8 more and he was finally comfortable. I like to think I'm pretty liberal with the pain meds but I would never have given him that many ... kudos to the doctor for being agressive and helping us get things under control ... now we have to keep it there.

We doubled his evening Oxycontin (long acting oxycodone), he took the rest of his meds and went to to bed.
I feel like I'm in a TV show ... every day there's a mini emergency / drama that plays out ... its unbeleivable.

Day 742 Saturday January 7th, 2006

Saturday was a better day, for the most part the pain was somewhere between comfortable and tolerable. Not to look a gift horse in the mouth but it would be nice to understand why things are better, is it the chemo doing its job on the tumors thus reducing the pain causing inflammation or is it the fact that he's on unusually high doses of pain meds. There are two other issues that I'd love to be able to understand, although the pain was better he felt kinda sick and nauseous, again ... is it the chemo or is he taking too much pain meds ? Then there's the new pain in his abdomen, is this a chemo side effect or something new ? I guess the bottom line is, it was a day were James was pretty comfortable and at this point thats all we can hope for.

Days 743 - 744 Sunday - Monday January 8th and 9th, 2006

Sunday was a pretty good day ... Monday was not so good. Although James was having a good day on Sunday I wanted to touch base with the Doctor, give her an update and talk a little more about his abdomen pain. The conversation went well and we made a plan for Monday, she was going to add a urine test to his lab order, James would have these labs done in the morning, we would then go to clinic and have her paged, she would then come down and give him an exam ... basically "poke around" abit. It all sounded simple enough.

James and I arrived at Lab Services just before 10:00am, it was packed, the waiting area was full and people were waiting outside in the hall so we decided to go straight to clinic. When we got there we were informed that we "were early", we were on the schedule for 1:00pm ?? they did said they would try and work him in. We decided to go back down to Lab Services ... and guess what, there was no order for James urine test ... freking perfect.

James' semi-weekly lab draws :
Being poked in the arm is not much fun ... it actually hurts. The first lab tech ended up poking him a couple of times, was unsuccessful and ended up having to get someone else to do it. Its just one of those seemingly small and insignificant things he goes thru that I take for granted ...

Ok, labs are done back to clinic, after a short wait he was seen, after the exam they ordered an ultrasound ... unfortunately the earliest they could get him in was 2:30pm ... ok, no big deal, we would come home for lunch and then go back. We arrived on time and presented our paper work at the radiology check-in desk ... "I'm sorry but there is nothing in the system for you", ... Huh ... are you sure ??? the receptionist made some calls and assured me there was no order for James and that they were full ... but ... if we wanted to wait they would try and work us in. OK ... this was really starting to get old.

During this whole mess I was trying to setup a "last minute" stent exchange and follow up on two bills that the insurance company either didn't pay or declined to pay, oh yea ... here is the reply to my email to our case manager at the insurance company "I am out of the office until further notice, without access to E mail or voice mail. Please contact another leader or a supervisor for assistance." Are you kidding me ...

To top it all off ... sorry ... I'm starting to get on a roll .. todays labs showed that James' kidney tests are now 50% higher then the previous all time high (not a good trend). We finally got home at 5:30pm.

PS : The ultra sound did not find anything "unusual".

Day 745 Tuesday January 10th, 2006

James felt pretty good on Tuesday, all in all it was one of his better days. His friend Davin came by and they went and visited an ex-teacher, one of James' favorites. Mr "C" used to run the video imaging lab at the High School before retiring last year. One of the interests they share is state of the art home theater equipment ... James really enjoyed the visit and watching some dvd's on Mr C's tricked out home theater.

James has been scheduled to have his stent exchanged on Wednesday ... 7:30 surgery means being at the hospital at 6:00am .. yuk.

Day 746 Wednesday January 11th, 2006

Tuesday found James up at 5:30am and on his way to hospital. Half a sleep, dressed only in a johnny, in the sterile confines of the hospital pre-op room, having yet another IV inserted in his arm, anxious about the surgery, thoughts of whats to happen (specifically from a man's point of view), not a great way to start the day. Although the surgery itself went fine, it was not all great news, the uroloigist says his bladder and prostate are being pushed, "deviated", by a mass outside the bladder.

James was very "distant" as he recovered in the PACU, the nurse even asked me if always seemed this depressed. He just layed in the bed, not wanting to getup or go home ... just staring into space. The rest of the day went pretty much the same way, lots of sleeping, not many smiles.

Unfortunately tomorrow will probably not bring much "joy" as its another day in the hospital, 3 hrs of chemo.

Day 747 Thursday January 12th, 2006

We arrived at the Childrens Specialty Center at FAHC at noon for James' chemo. He had slept pretty good last night and his pain was well under control. James brought a portable DVD player to pass the time, they accessed his port on the first try, (which is so nice compared to the hassle we had with his old port) ... things were going smoothly. The first drug, which he had last week, is Gemcitabine, this infuses over 90 mins. The next drug, Docetaxel, can cause allergic reactions so James has been taking a fairly strong steroid to help prevent any complications, this drug infuses over 60 mins.

Just as the Gemcitabine was finishing, James started feeling itchy and developed a rash on his arms, then his back started hurting, he was having a reaction. After an hour or so and a couple of doses of IV Benadryl, the itching and rash subsided, unfortunately the back pain only got worse. The Docetaxel, which had a history of causing reactions, was started and infused without a problem. As it always takes longer than expected, especially with the setbacks we had today, it was now 6:30pm (the Specialty Center had been closed since 5:00pm). It was just me, James, the doctor and the nurse, James was still really hurting and we were trying to decide how to proceed. James did not want to go home in the pain he was in. They had already given him a substantial amount of IV narcotics and the options were limited. After much debate we talked James into comming home. We got home around 7:30pm and were able to get James' pain under control shortly afterwards, unfortunately he was still feeling lousy. At 10:00pm he had a fever (102.5), we gave him some tylenol and rechecked him at 12:30, it was still over 102, time to call in. It was decided to ride it out at home and give him more tylenol at 2:00am, it was another long night.

The Lab results from earlier in the day showed his RBC were at an all time low, James needs to return to the hospital tomorrow morning for another blood transfusion.

Day 748 Friday January 13th, 2006

At 6:30am James' temperature was back to normal and his pain was still under control. We woke a very tired young man a little earlier than normal so we could get the blood transfusion under way hoping to get it finished in time to catch Aarons basketball game.

Although there were the usual delays, James' transfusion went well and finished on time. During transfusions they always closely monitor his vitals in case of an allergic reaction, it was interesting when they took his temperature it was 95F, (I guess maybe his body "over compensated for his 102 ???). Even though James spent most of the time at the hospital sleeping, he went right to bed when he got home. He still doesn't feel great, probably more due to the chemo than low red counts.

Days 749 - 750 Saturday and Sunday, January 14th - 15th, 2006

It's been a tough couple of days, James has been nauseous and feeling sick all weekend. As I mentioned before, its really frustrating not knowing why, is it the chemo, have his counts dropped again, is it the mixture of the 12 different drugs he's currently taking ... or "D" .. all of the above.

James' weekend pretty much consisted of sleeping, we'd get him up to take his meds and try to get him to eat, maybe a piece of toast or a cracker. There's much written on the importance of good nutrition, especially for chemo patients, I can't remember the last time James has been able to eat a healthy meal. For the short amount of time that James is up it is painful for Pam and I, he stares into space, a permanent frown on his face. I can't interest him in any activities, Xbox, DVD's, computer .. he has no energy or desire. The whole situation is wearing us all down. Sunday evening I got on the tread mill and tried to escape for an hour, but even that was cut short .. there is no escaping it ... it is 24/7. James had gotten up and was not doing well, he wanted us to to call the doctors. We had a long talk and he finally opened up, it wasn't so much the symptoms but more the outcome, he was scared and doesn't want to die ... I guess sleeping is an ok thing .. until things get better.

Days 751 - 752 Monday and Tuesday, January 16th - 17th, 2006

James had labs done on Monday in the hopes of finding a clue to his latest problems. Getting test results is a "funny thing", wether its labs, xrays, etc, the only person who can see the results is the ordering doctor, the patient, for what ever reason, is not allowed the information. My "charm" seemed to have run out as my normal "connections" failed me. It took over an hour on the phone, including being hung up on, to finally get the results. Although the results were somewhat normal a plan was made to have James go to clinic on Tuesday and get some IV fluid.

Tuesday started out poorly and went downhill from there. James woke up with sharp back pain, he was hurting and still nauseous, he got dressed and we headed to clinic. After further review of his labs they decided he was not dehydrated, their guess as to what was causing his continued nausea. During the routine check-in they weighted james, he was down 8 lbs since Friday, not a huge surprise as he hasn't been eating, but alarming just the same. With his pain seemingly unmanageable and with his weight loss, they decided it be best to have him admitted. The last few days ... all 752 of them, finally caught up with me and I crashed, the aweful thoughts starting creeping back in .. it really sucked.

Day 753 Wednesday, January 18th, 2006

A fairly active day at the hospital, the pain team consult resulted in a recommendation to change the narcotic James is taking from Oxycodone to Methadone. A CT scan of his abdomen showed nothing "remarkable", his nausea is improving. His counts are starting to drop and he needed a transfusion of paletlets. Best case is he will be home in 2-3 days.

Day 754 Thursday, January 19th, 2006

They started James on TPN last night (IV food) and he is feeling much better this morning. The switch to Methadone "seems" to be working, although I have my doubts that it will work long term, I guess we will take it one day at a time. With his nausea and pain under control they have given him the ok to go home ... but not right away. His RBC and platelets are still not stable so before he comes home he needs to have a transfusion of both of them. As always this is a long process ... it took over 9 hours, Pam and James finally arrived home after 10:00pm. It was along day and everyone is exhausted, James is feeling good and off to sleep in his own bed, hopefully all goes well over the weekend.

Day 755 Friday, January 20th, 2006

Friday was a pretty good day, James still feels pretty good, no complaints about pain. Pam, James and I went and watched Aarons basketball game (another ugly loss) and then stayed and watched the varsity play. James commented that is was "nice to get out" and that he really enjoyed watching the games.

Days 756 - 757 Saturday and Sunday, January 21st - 22nd, 2006

To put it mildly, it was a very interesting weekend. As mentioned earlier, James' pain med has been changed from Oxycodone to Methadone, due to the delicate nature of such a switch (swapping powerful narcotics in high doses) it was done by consulting the experts, the pain management team at FAHC. From what transpired this weekend it appears that the conversion calculations were a bit flawed. James was "feeling no pain" this weekend, he was a totally different person, he was "happy", had an uncharacteristic "sassy" sense of humor, he was singing and dancing, joking around, it was wild. The "fun" started out abit over the top with some "mild" complications, after consulting with the doc's we reduced his meds by 33%, this brought things down to a manageable level. It was obviously GREAT to see him out of pain and loving life but at the same time it was a little uncomfortable. Hopefully we can find the right recipe and subsequently rediscover the "real James".

Days 758 - 759 Monday and Tuesday, January 23rd - 24th, 2006

James has had a pretty good couple of days. We are hoping the reason he can continue to reduce his meds is that the current chemo regimen is starting to work and the tumors and associated inflammation are starting to lessen. Although his labs on Monday looked ok, they are not quite at the minimum level required for him to get his next round of chemo. He will have his labs done again on Wednesday, hopefully they will have improved enough so he can stay on schedule.

Day 760 Wednesday, January 25th, 2006

The results from todays labs indicate that James' platelets have recovered enough such that he will be able to stay on schedule with his chemo treatments. He will start round two tomorrow.

He had some friends stop this afternoon and they all enjoyed time playing Xbox games. The evening worked out great as we were able to go out to dinner, the timing couldn't have been better with James feeling good, with an appetite, just a day before resuming chemo.

Day 761 Thursday, January 26th, 2006

James' chemo treatment went well, we were in and out in just over 3hrs. So far so good, he eat a good dinner (no nausea yet !!) and went to bed early.

Days 762 - 764 Friday - Sunday, January 27th - 28th, 2006

Besides some mild nausea, Thursdays chemo has been pretty well tolerated. Today was the worse day and even then, James was still able to eat. He's been staying busy playing video games with his brother and reading the latest Harry Potter book.

On a personal note, old age seems to be catching up with me. On Thursday I developed a floater in my left eye. Its pretty annoying and at first made me a little nauseous, I guess the scary part is how it came out of no where. Its another reminder of how fragile your health can be.

Day 765 Monday, January 30th, 2006

James' pain, discomfort and nausea have been increasing over the past few days. The pain has been more of a "nuisance " and hasn't required any extra meds ... until today. I don't really know whats going on, the only thing for sure is we want to keep him comfortable. He is back on Prednisone, hopefully this will do the trick.

It will be a busy week with his last "scheduled" chemo this Thursday, sometime shortly afterwards we will head back to Boston for another round of testing.

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