The entries are in reverse order, with the final note at the top of the page.
Please scroll down to the bottom to begin at the start of the chronicle of events.
Thank you to everyone who attended the service last Saturday, it was so nice to see the large number of people who showed up, and it was comforting to all of us to know that so many held Paul dear in their hearts.
Here is a map of Cataraqui Cemetery where Paul is buried:
If you take the Sydenham exit off the 401, and are going south on Sydenham, then take a left when you get to Princess Street and then the next left onto Counter Street. The next left after that is Purdy Court, and the first right is Purdy Mills Road. You will see the cemetery right away on the right, so go through the gates and make a right. Then continue until you get to Beech, take a left, and then take a right onto West Street, and the gravesite is located at West and Oak on the right.
Lilacs will be planted there in the spring, because our home on Johnson Street was surrounded by them and the frangrance will evoke pleasant memories of Paul and our time living there. The site marker will not be ready until December, but for now you can find Paul under a tall tree and there are cut flowers adorning the site. Please visit if you can, it is a beautiful old cemetery and very peaceful.
I will no longer be posting to this site, but Paul and I always intended to leave it on the web so that others who are suffering from pancreatic cancer will be able to feel more prepared for what may happen to them, and also to feel inspired to live their life as fully as Paul has this past year. Thank you all for your support, it meant so much to Paul and myself.
- posted by Cindy
Here are the details for the funeral service at Robert J. Reid Funeral Home :
Family Visitation: 12 pm on Saturday, November 20th (this is for family only please)
Public Visitation: 1 pm on Saturday, November 20th
Service: 2 pm on Saturday, November 20th, in the chapel at the funeral home
Reception: After the service at Cindy and Paul's house we'll have coffee & tea, snacks & hugs
The burial will take place on Tuesday at the Cataraqui Cemetery and will be attended by family only. The time has yet to be determined, and I will post it when we know more.
Paul had pre-arranged all this with the funeral home a couple of weeks ago, and did not want any other visitations, so only the ones on the day of the service are scheduled.
- posted by Cindy
Paul passed away today at 2 pm at the Kingston General Hospital. He was calm and suffered no pain. I will be posting funeral details in the next few days. Thank you to everyone, you were all so very very kind to us both.
- posted by Cindy
Sunday was about the same as Saturday, although he was less agitated. Nothing much new to report.
- posted by Cindy
Yesterday Paul became more and more agitated and confused. He kept asking what he should do, and often responded with "I don't know" to most questions he was asked. He was very scared and upset. In the morning the doctors increased the Nozinan, an anti-anxiety drug, and that seemed to help him sleep. The doctors suggested only one visitor come in at a time, and just to let him rest and not talk to him or disturb him. Each time he woke up he was still confused, asking where he was, and upset because he didn't know what he was supposed to do. But during the night he became a bit calmer each time he woke up, although still very confused. Today I hope that at the very least he will not be upset, but the doctors have told us that the confusion is due to the toxins in his system no longer being cleaned out by his liver, and they are going to his bloodstream and into his brain. They have warned us that the confusion will get worse, and this is all part of the process and that we will try to keep him as comfortable as possible.
- posted by Cindy
Paul only just got to sleep this morning at 6 am. Yesterday he was more alert during the day, and he had some good conversations with me and with other people. But the night was difficult, he kept saying he just wanted to go, and he was not really sleeping and just staring at the ceiling a lot. We talked quite a bit, mostly I tried reminding him of good times we'd had in the past and of all the things he's accomplished over the years. I don't think that did much good though in that it reminded him he would never be doing those things again. However, when we put the TV on around 5 am and watched a David Suzuki program on birds, that seemed to soothe and distract his mind enough to fall asleep. His physical pain is under control but his emotional pain is not.
If you were planning to come for a visit today it may be best to wait until tomorrow since he will need to rest today after such a horrible night. Or come late in the afternoon if you can.
- posted by Cindy
Yesterday Paul took a turn for the worst, and is sleeping pretty much all the time now. Maybe once an hour he will wake and say a sentence or two, then fall back asleep. He is being hydrated intravenously, but he has refused food, and refused nutrition intravenously. He no longer can move much and has to have a catheter for his bodily functions. He is not in any pain, they are giving him morphine shots every 4 hours, and his other medications as well via the needle, since he cannot take pills anymore. I have moved into his room now, they have provided me with a cot, and I will go home only for a couple of hours a day to shower and change. Both his family and my family are here and we are being well taken care of.
I apologize if I am giving too much detail, but Paul and I discussed this and we felt that it would be helpful to other families and cancer patients going through this to have all the information. Other sites have usually ended their stories about now, because it is the cancer patient who was doing the postings. Paul wanted to make sure that others knew the full story and what to expect.
- posted by Cindy
Well, Paul is still about the same, although he does not go far any more, maybe he walks six feet to use the washroom, otherwise he remains in bed and does exercises there that the physiotherapist recommended. He sleeps until 1 pm most days, sometimes later if he didn't sleep at night, but after that he's usually pretty wide awake and lucid until about 7:30 or 8:00, with a short nap sometime around dinner. We have filled out all the paperwork to go to St. Mary's hospital here in Kingston, it is supposed to be much more in tune with palliative care and the rooms are more quiet and set up to accommodate visitors better. However it will depend on if they have a bed for him, and he is more than welcome to remain here at this hospital if he doesn't get into St. Mary's. We have been very happy with the nurses and doctors here, they have been very attentive and very helpful.
New info at 9 pm:
I thought it best to let you know that Paul is no longer reading this site, or posting to it. He was extremely fatigued today, and didn't eat very much. Also, I want to let you know that last Saturday the doctor gave us the prognosis that he only had about a couple of weeks left, because of the extreme growth of the cancer when they compared Friday's CT scan to the one 2 weeks before. I'm sorry I didn't post this sooner, we told our families, which was very difficult, but it was also very painful to tell others. However I thought it best to let everyone know in case you wished to speak with him over the next few days. The number is 548-2367, and patient locating will put you through to our room.
- posted by Cindy
Things are not going very well right now. Paul has become jaundiced, and is extremely fatigued. We met with numerous doctors yesterday, because the CT scan Friday indicated that the cancer has spread quite a bit in the last two weeks since his last scan. They are not going to be able to take an aggressive approach any longer with the cancer, they are now concentrating on Paul's comfort. There are too many lesions on his liver, and it has spread to his abdomen area too. We spoke with the medical team, our oncologist here, the radiation oncologist, and interventional radiation was also consulted. The things that they can do will not be effective for very long, and would cause side effects that he may not be able to cope with, such as increased fatigue, nausea, etc. We are looking into palliative care options, and I will be moving into the hospital to stay with him. You are all welcome to call us here if you wish.
- posted by Cindy
We heard from Princess Margaret Hospital, and things are in the works with the Iressa funding, and it's looking positive, but we're not getting our hopes up just yet. We don't have any other information at this time, and we'll keep you posted. Paul's doing okay, he's still sleeping alot but he's eating and doing most things normally. He's working on getting more exercise during the day, just small things for now.
- posted by Cindy
Paul is doing okay, he's getting stronger every day, although slowly. He will still stay in the hospital for a few more days, and they will continue to monitor him closely.
- posted by Cindy
Paul's doing okay, he's still weak and has trouble getting around right now, but every day he gets stronger and he is working hard at getting his energy back. His filter seems to be fine, he can't even tell it's there. The swelling in his leg has gone down considerably, and he is eating well. A physiotherapist gave him a list of exercises he can do in bed to keep the circulation in his legs working properly, and to keep from losing muscle while he is recovering in bed.
The doctor said he could go home if he wants tomorrow, but we both think he went home too early last time and he will probably stay a bit longer in the hospital this time. He has better roommates this time and it's much nicer in his room, he has a bed with a window that has a view of the water. We have arranged with Homecare that he will have all the extras he got in the hospital to be delivered to our home (electric bed, walker, etc.), so that they are here if he needs them. Homecare is offering these things free of charge, and will continue with the nurse visits too.
Ripley our dog is doing fine, she has a benign tumor in her ear as well as a minor ear infection, and I have to give her ear drops twice a day for 2 weeks.
- posted by Cindy
Yesterday afternoon Paul went back to the hospital, the doctors think a new blood clot has formed even though he was on the blood thinner, and they will do a CT scan today to find out if that's the case. He was short of breath and extremely tired all day, and when the nurse came to the house she said he should probably go to emergency at the hospital. His INR was 1.8 in the morning, and they did another blood test in the evening and it was 2.3, which is in the acceptable range of between 2 and 3, and his blood was not too thick or thin. The doctor said that it is not unheard of for cancer patients to be resistant to Coumodin, the blood thinner he was on, and still form new clots even while taking it. This means that he will probably have to use a different drug instead, Dalteparin, and give it to himself through injections, which he has already done before in the hospital the last time. The good thing about this drug is that he won't have to have blood tests and have his INR measured, he just has to have the shot once a day.
Paul was doing fine in the hospital last night when I left him, and they said he probably won't be in the hospital as long this time.
New Info at 10:30 pm:
Paul had to undergo a filter placement in a vein in his abdomen because the ultrasound this morning showed a large clot in his leg, and they didn't want to take the chance of this big clot breaking off and going to his lungs. This filter is just a preventative measure, and he was awake during the procedure, which took about an hour. He was feeling pretty good when I left him tonight, and hopefully he will be better tomorrow.
- posted by Cindy
Paul had a blood test yesterday, and it was at 4.3 for his INR, so they recommended he skip the blood thinner pill yesterday, and today start taking it at 2.5mg instead of the 3 mg he was taking it at. He's still pretty tired and doesn't have a lot of energy, but if we take things very slow he is fine. Today we have to go to see his family doctor, so he'll spend most of the day resting for that.
New info at 10pm:
Paul had a swollen lower right leg this afternoon, and when we went to the doctor she said he has Deep Vein Thrombosis, and that the blood thinner should be taking care of it, but that he needs to keep his leg elevated. So far the elevation is helping and his calf feels less swollen. We have to go to MDS tomorrow morning first thing for another blood test, and then the nurse is coming in the afternoon. I also have to take our dog to the veterinarian in the afternoon, she has developed a strange nodule in her ear that is large and she keeps scratching at it. But our main focus will be rest, rest, and more rest for Paul.
- posted by Cindy
Well, Paul's still pretty weak, apparently these clots can take a couple of weeks to dissolve. He's doing okay, but we need to take it pretty easy and not do too much. We are going for another blood test tomorrow morning, and hopefully his levels are fine.
- posted by Cindy
Paul had a good night and slept well. Yesterday was busy with relatives visiting and nurses coming by. Today we have the lab coming in the morning to take his blood, then a nurse at 11 to assess him and take his vitals, then we will have to wait until we hear back from his blood test results to find out if his blood is normal enough again to start the blood thinner again. He was off the thinner for two days because he had a level of 5.2, which is too thin, and it should be between 2 and 3.
New Info at 6:15 pm:
We finally heard from the doctor at the hospital who is currently monitoring Paul's blood, and it's at a 3.3 today. So she's recommending 2mg of Coumadin today, and 3mg tomorrow and Saturday. Then on Sunday we have to go to Hotel Dieu to get another blood test and have his level measured again, and they will tell us what dosage to take for the next two days. Also, Paul did not have a family doctor here in Kingston, and luckily my own doctor has agreed to take him on as a patient.
- posted by Cindy
So far it's been a good morning, Paul's sleeping a lot, but he's eating well and his mood is better. We will post more later.
- posted by Cindy
Paul is now at home, he was discharged at about 7 pm. He's feeling pretty good and we are watching a movie right now with his sisters. We spoke with the naturopath, the doctor at the hospital, and the pharmacist at the hospital, and the natural remedies he's been taking should be fine with his new blood thinner medication, Warfarin, also known as Coumodin. Actually, his INR reading is 5.2, which means his blood is too thin, and he has stopped the Warfarin until Thursday and will then resume taking it at a lower dose.
We have not yet heard from the doctor in Toronto about getting funding for Iressa, but we will contact him tomorrow. Our main focus over the next couple of days is lots of rest to get Paul's energy levels up again. Nurses will be coming to the house every day for the rest of the week, to monitor his vitals and take blood tests.
- posted by Cindy
Paul has improved again today, although he was more tired today compared to yesterday. He met with a physiotherapist who evaluated him and said he is doing fine, and gave him some exercises to do to help build up his strength and help prevent more blood clots. Paul was also moved to a new room, they felt he was stable and didn't have to monitored as closely so he went to a ward for patients who had stabilized. Hopefully he will feel okay to go home tomorrow.
- posted by Cindy
Paul is much better today, he was able to walk around a lot more and not feel as much pain. He's also been less breathless too. He's still on the mend though, and we think he may stay in the hospital until Tuesday just to be safe.
- posted by Cindy
Paul slept quite well through the night, even with the nurses waking him up every 4 hours to give him his medication. He says the pain in his side has subsided somewhat, so that now he feels the pancreas ache again. When the pain in his side was so bad it obliterated any other aches and pains he might have felt. But now the side pain is better, and his breathing is a little better, although they've given him a tool to pratice increasing his breathing so that he can expand the size of his lungs again. He still needs plenty of rest and sleep though, so we think he'll be in the hospital another couple of nights just to be safe.
New Info at 10:15 pm:
Paul's doing better today. He is still experiencing some pain, but nowhere near the kind of pain he had yesterday. Today he was able to get out of bed and walk around a bit, have a shower, and generally feel less weak overall. The pain right now is about a 5 or 6 out of ten, and the doctors want it to be more like at 2 or 3 when he's feeling his worst, so we have been talking with different doctors and adjusting the morphine to work with this new pain. This should only be temporary though as the pain in his side should go away when the clots go away, and then he can return to his original dosages.
- posted by Cindy
Thursday at 11 pm we went to the emergency room at the Kingston General Hospital. Paul was experiencing severe pain on his left side, and it turns out that he has numerous small blood clots attached to both of his lungs. Luckily no surgery is necessary, he has to take a blood thinner that will help break down the clots in 5 days or so, and continue to take the drug for the next 6 months or so to keep any more clots from forming. It explains why he has been especially fatigued and short of breath over the last few weeks. We were aware that cancer patients are predisposed to forming blood clots, so were not that surprised by the diagnosis.
He was in Emergency most of Thursday night, until they admitted him at about 6 am Friday morning, and he is still there now. He is still trying to get the pain and fatigue under control, and is short of breath right now because it hurts too much for him to inhale fully, so the doctors thought it best he stay at the hospital while he rests and these things start to improve. They are increasing his morphine temporarily so that he can get a handle on this new pain, but will hopefully go back to his regular dosage in 5 days or so when the clots dissipate. Hopefully he will be home tomorrow, but we won't push it if he is not feeling significantly better.
- posted by Cindy
We went to Princess Margaret Hospital today and had blood tests and a CT scan done. The CT scan showed that the lesions on Paul's liver are still growing. The blood tests were adequate (his bilirubin was at 21), however they are showing elevated levels in the liver functions. Paul qualifies for the upcoming clinical trial, however it was decided that he would not participate in it after all. The doctors have seen all participants become very fatigued on this trial, to the point where those participants who could function and even go to work were so fatigued that they had to be hospitalized. Since Paul is already getting quite fatigued regularly, we and the doctors didn't think it would be worthwhile to do the trial, and also because it hasn't been showing any significant results for the participants.
However, Dr. Moore is recommending that Paul try a lung cancer drug called Iressa, a drug that is used for lung cancer patients and has shown some progress with pancreatic cancer patients as well. The downside: it costs about $2500 a month to take it. Dr. Moore is contacting the appropriate government agencies to see if he can get Paul covered for it and we don't have to pay for it ourselves. But even if they turn him down we will still go ahead with it for a couple of months to see if it will be effective as a treatment for Paul. The doctor will know hopefully by Wednesday what their decision is. Also, we intend to continue with the naturopath, and we have another appointment with him this Wednesday.
Here's some other sites on Iressa, and its main ingredient "gefitinib" :
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15202007
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14583782&dopt=Abstract
http://www.medicinenet.com/gefitinib/article.htm
http://www.genomenewsnetwork.org/articles/2004/04/29/lung_cancer_drug.php
- posted by Cindy
Nothing really new to report. Paul has put weight back on this week, and is looking healthier. We had a nice day in Port Hope on Sunday at Paul's parents' home, and many friends came by to see us. The nurse is coming by the house this morning to check on him, and this week we are focusing on rest and food so that his tests will be good on Thursday and he can qualify for the trial that starts Monday.
- posted by Cindy
The clinical trials nurse in Toronto called today to confirm that the trial is on for the 18th and that Paul is formally registered in it. We will have to go to Toronto this Thursday for blood tests, a CT scan, and a meeting with the doctor, and if everything looks to be within the acceptable ranges we will begin the trial on Monday, Oct 18th.
- posted by Cindy
Paul's doing well, he's eating alot without any prompting from me, and his energy is up, although yesterday he didn't have a nap during the day and he was feeling pretty zoned out and fatigued in the late afternoon. He's learned from that though and will make a point of resting in the mornings. His pain is under control and he's feeling somewhat human, so we are hoping he will be okay for the clinical trial coming up. The nurse came by on Tuesday and did an examination and asked many questions, and she'll be coming by today, and then every Tuesday to check on him for now (if he needs more she will come by more often).
- posted by Cindy
Paul is still pretty tired all the time, but he's eating and he's still striving to take care of himself and get his energy back up. A homecare nurse is coming to the house tomorrow to evaluate Paul's needs and to decide how often she should come by to see him each week, so she can check on his progress and make sure he's taking the correct medication for his pain and dealing adequately with any side effects. This will get us automatically put us under the Ontario Drug Plan and all his prescriptions will be covered, which is good because he currently doesn't have any medical coverage.
- posted by Cindy
We have moved in! Moving day went extremely well, thank you to everyone who came by to help! The next day went well too with the movers, and my parents were amazing in co-ordinating all that while Paul and I went to the cancer centre to see the pain specialist. Paul of course was feeling wiped out that morning, the stress of this week was a lot for him to handle, but the doctor saw him at his worst and she did a very thorough examination and we had a long discussion. She has added Dexamethasone (a steroid) and Domperidone (for digestion and nausea) to the morphine that he is taking, and he is now eating more and has no constipation too. He's also doing the recommended program suggested by the naturopath and we have seen no adverse affects from that, and it is probably responsible for his increased appetite as well.
Thanks so much to everyone who helped us this week, whether it was your physical presence or simply your prayers and good wishes you sent our way mentally, we are so grateful for all of you and cannot thank you enough for all you have done for us.
- posted by Cindy
Moving Day! Well, the packing has gone pretty well (although I had to hit 2 liquor stores for more boxes -- I can't believe how much crap we have!), so we're on track. We went to the lawyers and signed the papers yesterday, however because the current owners are buying a house in Napanee, they might not be getting their key until late, so we are now being told that we may not get our key until 3 pm! However, we have stuff to keep us busy around here, no worries if you show up at 2 as planned.
We did go see the house yesterday at 5 pm, and they did a bunch of small touch ups and fixes for us, so the place looks good although dirty. We are thinking that as soon as we get the key we will send a posse of 6 people to the new house to clean it, while the rest of us take time loading up the vans, trucks, and cars. It really needs to be vacuumed first, especially in the corners and by the walls since these owners have a cat and Paul is allergic to cats. The main traffic areas will get dirty regardless because of people moving stuff in, and we can do that later, it's really the walls and areas that get hidden by furniture that will need to be dusted and vacuumed.
Thanks to all the are coming to help today, and to all that can't be there but are with us in spirit, Paul and I appreciate everything you are doing for us.
- posted by Cindy
Yesterday was difficult, Paul was experiencing pain again when he woke up, but then we finally got the new time-release pills sorted out and finally were able to sleep through the night again without having to wake up every two hours. He's gone to Milton with his parents today to see a naturopath and should be back tonight.
New Info:
The naturopath that Paul went to see today suggested a supplement regiment that is similar to one that another pancreatic cancer patient we know is using, Doug, and luckily Doug has had stabilization and no tumor growth for 7 months. We are going to go ahead and try this natural treatment starting tomorrow, and still go on the clinical trial on the 18th. This naturopath also said that the Immunical that Paul has been taking would be hard on his liver, so he is discontinuing it's usage as it may explain some of the increased pain he has been experiencing.
- posted by Cindy
Paul feels much better today. He took 8 mg at 10 pm, 12 am, and 2 am, and skipped the 4 am dose. He did feel pain when he woke up at 6 am, probably because he missed the 4 am dose, but he took the extra morphine right away with the time-release dose and now he's feeling much much better. We will talk to our Kingston oncologist tomorrow and arrange to have the time-release dose increased.
- posted by Cindy
Another rough day. The morphine just hasn't been working properly, and it really only seemed to start working every day at about 10:00 am, and then wore off about 4 pm, so Paul didn't go into work this week. Today we had a hard time because we had been asked to do a reading at Paul's niece's wedding, but it was hard on Paul and he had to sit for most of the ceremony, although he managed to stand at the podium when we did the reading together. We left right after the ceremony and I called the hospital to talk to the on-call oncologist. Paul's been experiencing discomfort in his right shoulder, to the point that he can no longer sleep on his right side. So we told the doctor about this, as well as the other pains, and she said it would be best if he significantly increased the extra dosages of morphine. So now he is taking the 24mg of time-release morphine every 6 am and 6 pm, and then every 2 hours he also has to take 6 mg of morphine as well. So far he has had 2 doses of the extra 6mg and he feels human again. We'll let you know if this takes care of things for awhile. We also went ahead and left a message for our regular oncologist to bump up the appointment with the Pain Management team.
- posted by Cindy
We spoke with the clinical trials nurse today, and she said Paul will probably be starting the trial October 18th, if all goes well with the review of the current trial session going on right now.
- posted by Cindy
Paul's doing okay, although he is still tired. We heard from the Pain Management team, and an appointment has been booked for October 8th, however we are trying to get it bumped to an earlier date. We are excited about moving to the new house and we're slowly finishing up all the packing.
New Info:
We were able to reschedule the appointment with the Pain Management team, so now we're going on Friday, Oct. 1st, at 9:30 am. The movers are coming at 8 am that morning to move our big items and appliances, but my parents will be there in case the movers aren't finished and we have to leave for the appointment.
- posted by Cindy
Yay! Happy one month anniversary to us, woo hoo!
Paul is doing fine, he had a good day relaxing and just getting his energy back. No word yet from the Pain Management team, we're hoping they'll call tomorrow.
- posted by Cindy
Not much new to report today. Paul is feeling okay, but still feels a bit of pain around 5 am and 5 pm. At 5 pm today he took a 1mg pill on top of the time-release pill already in his system, and that seemed to help. He's also taking the anti-nausea medication and he's eating well. Paul's siblings came by today and very kindly helped us with the house, they mowed the lawn and helped us clear out the basement and the garage, yay!!! We're pretty much on top of everything now in terms of packing, and I'm hoping to do a little bit each day this week and be all ready for Sept 30th.
- posted by Cindy
Paul's doing okay. We had our garage sale today, and he stayed for the morning and then in the afternoon he went for a nap. About 5 pm he needed to take an anti-nausea pill, and he was also feeling kind of headachy. He took his morphine pill at 6 pm, and it kicked in at about 7 pm. He had some dinner and now he's feeling better, although the pain is still there, but we think it's due to constipation this time.
- posted by Cindy
Last night at around 10 pm Paul upped his dose to 14mg since he still had some twinges of pain. About 10 minutes later he threw up, so we decided it would be best just to hold off and stay at 12mg and see what happens. He didn't take any more medication until a couple of hours later when he took 3mg, then at 2 am he took 12mg again. He didn't take any more until 6 am when he took another 12mg. He is feeling much better now, the sweats and hot flashes he was experiencing has subsided and he feeling quite a lot better, although still drowsy.
We've spoken with the oncology nurse and arranged for the time-release morphine prescription, which should be ready at the pharmacy soon. He will begin taking that right away, and the nurse has told him to take 1mg or 2mg on top of it as needed if he feels extra pain while on the time-release pills.
New Info at 12 pm:
We spoke again with the oncology nurse, and because Paul's increase in pain was so quick and so intense, he has been referred to Dr. Schroeder of the Pain Management team at the hospital here in Kingston. They are going to contact us next week, but they are considering doing a central axis block, which is a method where they inject alcohol into some of the nerves around his tumor to block the pain. A study done by the Mayo clinic this year showed that it was much more effective than morphine for blocking pain.
New Info at 7 pm:
Paul has been feeling nauseous yesterday and today, so the doctor prescribed him some prochlorperazine, and that has really helped his appetite and he took it at 5:30 pm and already feels much better. He took the time-release morphine pill at 6 pm, and so far he seems fine, and will take them every 6 pm and 6 am for the next week or so.
- posted by Cindy
New Info at 9 pm:
Paul's doing much better and has stabilized at 12mg every 4 hours and two hours after that dosage then another 3mg. He's drowsy, but that's understandable after all his body's been through this week. A side effect of morphine is sleepiness, but he should adjust to that in a few days. We'll talk to the oncologist tomorrow and arrange for the time-release pills so that he doesn't have to wake up every two hours.
- posted by Cindy
Yesterday Paul continued to increase his medication to the maximum one of the 2mg pill every 4 hours, and 2 of the 1mg pill every 2 hours, as prescribed by the doctor (that's a total of 6mg in 4 hours), but he was still in pain, enough that we were considering going to Emergency. He also had a slight fever when he took his temperature.
We decided first to call Telehealth Ontario at about 9 pm last night, and the nurse there suggested calling the hospital and asking for the oncologist on call. We talked to a nice doctor and she said to increase the dosage he takes every 4 hours by 2mg at 10 pm (that would be a total of 6mg) and then if the 6mg dosage take all at one time didn't work, to add another 2 to 3 1mg pills after 1.5 hours (to a total of 9mg in 4 hours). Then she said that if that didn't work to keep adding another 2mg pill every 4 hours, and continuing the 2 to 3 1mg pills after 1.5 hours, until Paul reached a state where he was comfortable.
He took his last dosage of 10mg at 6 am, and he says he's comfortable now, and he will see how it goes in a couple of hours and if he will take the 3mg at 8 am. He is no longer feverish, but he does have the sweats which is apparently a side effect of the morphine. At 2:30 am last night he finally got comfortable enough to sleep, but we have both been getting up every couple of hours to increase his dosages and check that he's okay overall (no headaches, no nausea, etc.).
The doctor on call was going to inform Dr. Biagi, Paul's doctor, of the new dosage plan, however we will be calling him and his nurse when we hit on the best one for Paul. Right now though the concern is to get Paul eating again, since yesterday he didn't feel like eating much.
According to the information we have found on the web about morphine, he was prescribed a very low dose, and at this current dosage he's still in the acceptable range for his weight at this time:
http://www.chamisamesa.net/morphine.html
http://www.stchristophers.org.uk/page.cfm/link=280
http://www.hospicenet.org/html/pain_myths.html
http://www.cancer-pain.org/treatments/treatments.html
http://health.discovery.com/centers/pain/cancer/cancer_morphine.html
- posted by Cindy
Unfortunately Paul is still battling his pain and has tried increasing the Percocet to 2 pills every 4 hours, but this is not helping too much. It does work somewhat when it kicks in, but sometimes it takes an hour and a half before it starts working, and in the meantime he's pretty uncomfortable waiting for it to work. We will talk to the doctor again today and see if there are any other options for him, it may mean going on to morphine.
New Info:
Paul's got 2 bottles of hydroxomorphone (morphine), one of 2mg pills and one of 1mg pills. He's supposed to take one 2 mg pill every 4 hours, then one to two 1mg pills every 2 hours as needed. He started with the 2mg pill at 2 pm, then took one 1mg pill at 4pm, then because he was still in a lot of pain he took one 2mg pill and two 1mg pills at 6pm. Right now it's only taking the edge off and not getting rid of the pain completely, so we are hoping by keeping this up we will be able to get on top of the pain and then scale back on the pills if possible.
- posted by Cindy
Paul experienced some serious pain in his abdomen last night, and did not sleep most of the night. After phonecalls to both nurses and both oncologists, it was decided to stop the Tylenol 3's altogether, and take Percoset only to help with the pain. Paul had been prescribed Percoset on Thursday to take at night, but the dosage of 1 pill at 10 pm and 1 pill at 4 pm wasn't working. He increased it to two pills at 10 am, 4 pm, 10 pm and 4 am, so we will see if this does the trick.
By the way, thanks to all who have sent wedding cards and gifts, they were not necessary at all but still very much appreciated. And for those of you who've asked, I'm am keeping my maiden name as my married name.
- posted by Cindy
Paul had a horrible migrain yesterday, that lasted most of the day. He's better today, although still kind of tired. Expecting a call from the clinical trials nurse tomorrow, so we will post when we know more.
- posted by Cindy
Well, the blood test today showed the bilirubin level is down to 24, woo hoo! Paul had his CT scan, and the doctor actually got it when we went to see him in the afternoon. The scan hadn't been measured or anything by the technicians, but the doctor took a look at it and could see that some of the lesions in the liver had slightly increased in size unfortunately. But we do not know by how much, or if the tumor in the pancreas increased, that will be in the report next week. However, Paul is slated to start the next clinical trial in 3 weeks time, and here is some information about it:
http://www.hopkinskimmelcancercenter.org/clinicaltrials/index.cfm?action=3&protocolnumber=J0411
http://www.methylgene.com/content.asp?node=15
http://www.methylgene.com/content.asp?node=114
- posted by Cindy
Here's some pictures from our wedding, mixed in with other wedding pictures our photographer has taken at other weddings (I guess we're models now, hehehe!)
Note: It seems that they removed the pictures from the site above, so here a picture for you to view
- posted by Cindy
Paul is feeling okay, the Celebrex has been helping, and he has his constipation taken care of once again so that helped alot too. On Thursday we go for a CT scan and blood test.
We are beginning the packing process this weekend, and making a good stab at it. Since we are starting to get into moving mode, I have thrown together a list below of things that will need to be done on Sept 30, and I will probably keep adding to it over the next few weeks. Please send me suggestions if you think I may have forgotten something!
On moving day, Thursday, Sept 30, if anyone is interested in spending the afternoon with us and helping out, you are more than welcome to do so. We've already got 6 people confirmed to help, so there is absolutely no obligation to come here, we'll be fine. But if you have nothing better to do and want to visit us, we won't turn you away when you show up! As you can see from the list, we'll be busy!
- posted by Cindy
Yesterday Paul tried to get a blood test done here in Kingston. They have his tests on file at the lab, however when he went in and checked if any of the tests were measuring bilirubin levels they told him there weren't. We had thought that were measuring bilirubin every time he went in, but it looks like it was only when he did his blood tests in the lab at the hospital in Toronto. We have a call in to the clinical trials nurse to find out if she can fax the test here, or if we should just wait until Sept 9th when we go to Toronto for the next CT scan.
- posted by Cindy
We talked to the clinical trials nurse in Toronto today. The trial for the TRM-1 drug has been showing high blood pressure in some of the patients, so they have decided to only take 2 patients - one from Hamilton and one from Toronto. Unfortunately there are two people ahead of Paul on the list, so one of those people will get the spot and Paul will have to wait 2 months until the next round. However, there is another trial that he could start the beginning of October in Toronto, which has shown stability in a colon cancer patient, so we are looking into that one further and he has been put on the list for that one for now.
- posted by Cindy
I especially want to thank the people who have been helpful and considerate to me personally. Everyone has been very helpful and supportive of Paul and we appreciate that a great deal, but those that understand what I am going through as well, and have taken the time to help me out, I thank you very very very much.
Many of you understand that I can care for Paul better if I have support and care as well, and for that I am entirely grateful. You understand the strain I am under to keep our outlook positive, and to keep researching alternative solutions to our problem. You understand how we often spend the whole night talking about things and then struggling to make it in to work in the morning, how we try to fit in things to look forward to so that not everything in our future appears bleak, and that we juggle our time so that we are making the most of it without overdoing it. You especially understand how I am trying to cope with this disease and what it is doing every single time I look at Paul. I really appreciate all of you.
Please take this as a personal thank you -- for the phone calls, the emails, the conversations with me, for calling first before coming over, and for just thinking about our needs when we are both exhausted and worn out. In case I have been too busy to thank you in person: Thank you.
- posted by Cindy
Nothing much new to report. Paul is feeling fairly fine, although he's experiencing a bit more pain lately and is going to be taking Celebrex to help with that, and hopefully to reduce the amount of Tylenol he's taking as well. Wednesday he goes for his next blood test and we will let you know the bilirubin results.
- posted by Cindy
Soooooooo ....
Yesterday was a busy day, and we spent most of it at the hospital talking to surgeons regarding the stent surgery. After much discussion and tests, and review of all the test results from Toronto, they could not find any blockages on the ultrasound and the only thing that indicated a possible blockage was a bilirubin level of 49 (normal is 22). If he had a blockage then other things in his blood would have be high and indicated the likelyhood of a blockage, but everything except for the bilirubin level was normal. The surgeons decided that they could not in good conscience go ahead and do the surgery since there appears to be no problem.
Unfortunately Paul would not be eligible for the TRM-1 clinical trial in September if he doesn't get this level down, so they did more tests to determine the type of bilirubin that is high. This may indicate if there is a hidden blockage somewhere. However, the surgeon called this morning to say that the blood test he did yesterday showed his bilirubin had dropped to 31, woo hoo!!!! The surgeon suggested that Paul may have Gilbert's Syndrome, where the bilirubin levels increase when a person is stressed.
It's still not quite low enough for the trial (it can't be higher than 26), but it means it may be back to normal in a week or so, and we are doing a blood test again on Wednesday, and he's been scheduled anyway for a CT scan on Thursday, Sept 9th, in preparation for the trial. We'll keep you posted on what happens with the next blood test.
- posted by Cindy
We saw the oncologist here at the Kingston hospital, Dr. Biagi, and we are very pleased with him. He was very friendly and informative, and told us that the trial we are going to go with is a good one to try for Paul. Tomorrow we go to the see the surgeon for an initial consult, and hopefully we will find out that Paul's day surgery will be soon.
- posted by Cindy
Paul had an ultrasound at Kingston General Hospital this morning and it went fine. It was done in preparation for the stent surgery. He has an appointment tomorrow with an oncologist at KGH, Dr. Biagi, and then on Wednesday he has an appointment with the doctor who will do the surgery, Dr. Inovye. This is probably an initial consultation for the actually surgery, and we don't know when that has been scheduled yet.
Also, on Friday, we got married! Just a quick little ceremony at the chapel here at Queen's. It was a very sweet, personal service and we apologize if we shocked people by doing it so quickly. We found out on Wednesday that the chapel just came available at the last minute so we thought we'd go ahead and do it just for the two of us.
This does not mean that Paul's situation has worsened or anything, we don't want anyone to think that. It's just that the chapel came up, and it made sense to us to do something very small and private that was meaningful to us. We took some pictures and we will post them later on in the week.
- posted by Cindy
So far no bookings for the stent surgery, however Paul has been booked for an ultrasound for August 23rd here in Kingston. Paul is feeling okay still, although he has been feeling some minor pain recently and this is probably due to the bile duct starting to be blocked by the tumor.
- posted by Cindy
Many, many telephone calls today. Paul needs to have the day surgery mentioned below, and have the stent put in, so we are trying to arrange to get it done as soon as possible. He can either have it done here in Kingston or done in Toronto, so we have been calling around here while the clinical trials nurse tries to arrange something in Toronto. He needs to have it as soon as he can, because his bilirubin levels must be at a normal level (22) if he is to participate in the clinical trial, and right now the level is at 46 (that's not very high, it only becomes serious when it is over 100).
It is day surgery, but he will have to be off work for a couple of days afterwards. It's supposed to be quite simple, so we hope we can get it done quickly here in Kingston.
- posted by Cindy
Well, we saw the doctor yesterday, and discussed the clinical trial in more detail. Then Paul did some blood and urine tests, and we got a message on the voicemail today that his bilirubin level is a bit high, and he will talk to Paul tomorrow about things we can do about this. It usually indicates that the pancreatic tumor is blocking the bile duct, and day surgery may be needed to put in a stent. We will let you know more when we know more.
Also, our Toronto doctor referred Paul to an oncologist here in Kingston, so now we have two doctors working for us, and Paul has an appointment with Dr. J. Biagi on Tuesday afternoon. We let you know how that goes.
- posted by Cindy
We visited our house today, the current owners are SO nice and allowed us to take measurements and pictures of it. You can view them here.
- posted by Cindy
Paul has an appointment on Monday August 16 to see his doctor and begin the process for the new clinical trial. He is doing fine right now and feeling strong.
- posted by Cindy
We've put up our pictures from the trip! It's not fancy, and we've only started adding the descriptions, but we'll keep adding them over the next week or so.
- posted by Cindy
Paul has contacted the clinical trials nurse at Princess Margaret Hospital in Toronto to be signed up for the TRM-1 trial that is starting in September.
This trial has shown to alter tumors in mice, and in human cells injected in mice. This is the phase 1 stage, so there are no placebos involved, they are looking at tolerable dosages of this drug first, and if it is working on cancers in humans.
In a couple of weeks they will make arrangements for Paul to go to the hospital and go through a bunch of initial tests that will be the baseline for his participation in this trial. Paul has also found other trials that he qualifies for in New York and in Texas, and he is continuing to look into these as well.
- posted by Cindy
We've contacted Kingston's Clinical Trials group and we're waiting to hear back from them. We also found a few trials in the U.S. that Paul qualifies for. He has to wait 3 more weeks until the 5-FU is out of his system before he can begin any new trials. We will let you know which one we have chosen.
Paul's feeling okay physically and is fortifying his system by taking Omega 3's and Q10 enzymes. We are trying not to let the stress affect us and we are spending a lot of time with family in Port Hope (the dog loves it there!).
- posted by Cindy
Well, we went to Toronto and saw the doctor about the results of Paul's CT scan he had on Monday. We are not continuing with the 5-FU chemotherapy anymore, we are going to be choosing a clinical trial. The 5-FU stopped the tumor in the pancreas from growing, and it actually eliminated some of the tiny tumors on the liver, but the larger tumors on the liver actually grew a little bigger.
This was enough for the doctors at Princess Margaret to decide that the 5-FU wasn't working and that we needed to try something else. There are 2 clinical trial we could do in Toronto, but we are going to look into ones that are here in Kingston because apparently this is the national head office for clinical trials, and there may be others that are better for us here.
So, we are a little disappointed, but hopeful and pleased that some of the cancer has been killed off. Please keep sending us positive thoughts and we will keep you posted on what we decide to do.
- posted by Cindy
We're back! We had a GREAT time in Newfoundland, and we'll put together a website with all the pictures soon so you can see all the places we visited!
Oh, yeah and .... WE BOUGHT A HOUSE!
We've been looking for a while now, but every time we thought we'd found the right house, the house we liked was bought already, or had problems, or too far away, etc. The week we were leaving we told the agent not to send us listings to view because we'd be on holiday, but she had one more that just came up that morning! And it's really, really nice! It's a middle home of 3 townhouses, it's only 3 years old, and it has a private backyard that looks out to a field, a tiered deck, a finished basement, and 3 bedrooms and 2.5 bathrooms. We'll put up a picture when we get one.
*whew* too much is going on these days, we need a vacation, hehehe!!!!
Paul's feeling fine, and tomorrow he goes for another CT scan. On Thursday we will drive to Toronto to get the results and find out if the 5-FU chemotherapy is working. If not we will probably look into doing a clinical trial.
- posted by Cindy
Paul's doing fine, his cold went away and he's back on the chemo for two weeks. We had his blood tested on Wednesday and all his levels are normal.
Tomorrow we leave on our trip to Newfoundland! If anybody has been there and can recommend good camp sites or restaurants or tourist stuff, please email us!
We'll try to post on the road once in a while and let you know all about the fun time we're having!
- posted by Cindy
Sorry for the lateness of the post, there has been nothing to report until now.
First, Paul has a cold and has had to delay his chemo treatment by a few days. This is still okay since he will still get in the required 2 full cycles before his CT scan on the 26th. He is feeling better (his cold started Tuesday) and should be fine by the time of his next blood test on Wednesday.
Second, we're engaged! Paul proposed to me last Friday night and gave me a beautiful ring. No plans yet, we're going to wait until after our trip.
- posted by Cindy
Had a busy week and weekend. Got the oil change and checkup done on the bike. Haven't had a chance to really ride it since though. I'll definitely take it out tomorrow- the weather is supposed to be nice (sunny). Went to Toronto for the weekend and saw "Mama Mia" at the Royal Alex theatre with Cindy. Had a nice dinner nearby, and stayed at the Intercontinental Hotel. It was a nice relaxing evening, and went back to the theatre the next day for a pic. Stopped in Port Hope on the way home and had a father's day lunch with my parents and sister Margaret (the others couldn't make it, but here's a pic of us).
Still feeling pretty good on this chemo cycle, but I need to get more exercise than I am. People keep suggesting Yoga, but I'm not yet enthused enough to try it. May get on the bicycle tomorrow and see how that feels. Sorry for the delay in posting - and I'll try to include pictures as much as possible (as requested).
- posted by Paul
Phew, what a weekend! Yes, I finally got my bike- actually my dream bike (it's a long story, that goes back to high school, and a guy named Jim Russell who let me sit on his Honda Interceptor 500). Anyway, I've been busy racking up kilometers to "break in" the bike, in the hopes of getting to the 1000 km. odometer reading so I can take the bike in for its tuneup and oil change before we head off for the Finger Lakes next weekend. It's been rough, but I still can't wipe the smile off my face. Did my first group ride with my brother this afternoon up to his school (he's a vice principal), and rode back in the rain (luckily it stopped about 10 minutes into the ride back). Thanks again Frank - it was fun!
Feeling pretty good on this chemo cycle so far- hopefully it will continue.
Here's some pic's of my bike today (pic1, pic2) - stopped in Verona on my way home to take these.
- posted by Paul
The doctor was pleased that Paul is not suffering any side effects from the 5-FU chemotherapy, and has given him 2 more cycles (6 weeks - 2 weeks chemo, 1 week off, done twice). His blood levels are all doing well too. Oh, and we bought a motorcycle, a red Honda VFR 800FA! Pictures to follow, but here's a preview ...
(bike details).
- posted by Cindy
Paul is doing well, we are off to see the doctor on Thursday.
- posted by Cindy
Nothing new to report, Paul is still doing fine and has reduced the number of Tylenol 3's he takes from 8 per day to 4 per day.
- posted by Cindy
Paul is still doing fine, not showing any side effects to the new chemo.
- posted by Cindy
Had a pretty full weekend despite taking the new chemo drugs. So far, so good! Friday, Paul's sisters came down for the weekend. Saturday we went hiking at a friends cottage (pic), I skipped the hike and opted instead to read and keep the woodstove going. That night we had a barbeque get-together at my niece's house (pic). Later a few of us gathered at my house and worked out some more details on our east-coast trip (pic). Sunday we met up with some relatives staying in the Thousand Islands on vacation (pic), and later on met up at a local restaurant for some dinner (pic). Said our goodbyes to my sisters on Monday morn and relaxed the rest of the day. Stomach was a little funny later in the evening, but could be attributed to what I had eaten that day.
- posted by Paul
Paul starts the new chemo drugs today (see description May 14), so we'll keep you posted on how he's feeling.
Some friends were in town for business last night, so we joined them for dinner (pic).
- posted by Cindy
No news to report, other than Paul has reduced his Tylenol 3 intake, and is still feeling no pain.
- posted by Cindy
We spoke with the doctor yesterday about Paul's CT scan. The pancreatic tumor has shown a small decrease in size, however the lesions on Paul's liver have increased minutely. The doctor has chosen to change his treatment to 5-FU in order to tackle the cancer in the liver. This is chemotherapy in pill form, and it means we don't have to travel to Toronto anymore for intravenous chemo, just for appointments with the doctor. The side effects are supposed to be about the same as with the single dose chemo he's been having (Gemcitabine), and he may experience peeling skin on his hands and feet. If this happens we will need to change the therapy.
So no more evil double
chemo sessions, yay! Paul has to wait a week to get the old chemotherapy out
of his system, and then on Thursday he will start the 5-FU. He will take 5 pills twice a day at mealtimes for two weeks,
then he has one week off. He will do this cycle three times, then the doctor will do another CT scan to see if this treatment
is working.
Went out to the Spaghetti Factory yesterday for dinner (pic).
Here is some more information:
http://infoventures.com/cancer/canlit/pan1195b.html
http://www.bioscience.org/1998/v3/e/breslin/6.htm
http://www.chemocare.com/bio/bio.sps?iBiographyID=9253
- posted by Cindy
Paul is putting on weight again and eating well. We will find out the results of his CT scan and chest xray on Thursday, and hopefully it will show that we have made progress with the chemo.
- posted by Cindy
Paul is doing well. Nothing new to report, except that Essiac is the foulest tasting liquid ever made.
- posted by Cindy
Paul started taking Essiac today, and he's sleeping a lot, but he feels okay and is putting weight back on again.
- posted by Cindy
Paul is doing fine, just very very tired.
- posted by Cindy
I'm back! Had a good day, eating well, and actually getting to some chores around the house among other things.
Bought a herbal extract/concoction on the recommendation of a few respected people, and a fellow patient, called Essiac,
from a local health-food store. Will give the therapy a try after my CTscan, and chemo session on Friday, just to see if
it produces any obvious results before the next CTscan. Hopefully it will help with rebounding from the double-chemo sessions, at least. Will keep you posted.
- posted by Paul
Paul is doing well, and eating and getting out of the house regularly.
- posted by Cindy
Today was a good day. Paul is feeling okay, and is not too tired or experiencing side effects.
- posted by Cindy
Chemo went fine today. Paul is tired, but having no side effects since
this is just the one type of chemo (gemcitabine) not the double chemo.
- posted by Cindy
Okay, Paul's finally on the mend. He walked the dog with me today, and seems in more positive spirits. He's still fatigued, but that is to be expected. We will just have to expect that every double chemo will take 5 or so days to recover, regardless of how he is feeling one day to the next. We saw the doctor last Thursday and he was pleased that Paul is handling all the chemo fairly well, and has scheduled a CT scan for the 30th. Hopefully that will show a shrinkage in the tumor, and we will know that all this hard work has not been in vain. Thanks everyone for all the support you have given us, we'll probably know the results when we see the doctor on May 13, and we'll will let you know.
- posted by Cindy
Another pretty rough day. All foods taste terrible, and Paul's very fatigued and threw up again today.
- posted by Cindy
Paul woke up with heartburn, but took some Zantac 150's and was fine by lunchtime. He's still very very fatigued and so he's sleeping alot. He seems to be eating okay though.
- posted by Cindy
Paul had a rough night yesterday, but managed to sleep about 4 hours straight without being sick. He's been better today, keeping down food and dozing and sleeping alot.
- posted by Cindy
Got home from Toronto at about 6 pm. Paul was fine until the last 45 min of the trip, when he started feeling very sick. When we got in the house he threw up right away, and 2 more times since. He's trying to rest and is drinking lots of fluids. Hopefully tomorrow it will be easier.
- posted by Cindy
Paul's doing well. He's put on more weight and is getting ready for the double chemo on Friday. Cindy is doing well too.
- posted by Cindy
Paul had a very nice day today. Had a really nice lunch with a couple of beautiful ladies, Carol and Linda-Anne, whom he very much enjoyed the company of, and the food of course- Thanks to the both of you! Carol, have fun in England!
Afterwards he witnessed the joy of buying a dream-bike, by watching an older gentleman whom he had just met at a local bike shop (they were both there to check out the same bike) make the purchase. Hopefully he'll get the chance to experience that same joy someday soon. He's definitely enjoying the break from the chemo, and eating very well. Looking forward to the weekend, and spending time with family.
- posted by Paul
Paul had a very productive day today- took Cindy into work and then ran a bunch of errands. Should have snacked more, but had a pretty good intake of calories overall. Has dropped a few pounds, but nothing drastic- "will try harder tomorrow". Cindy found a good site with inspirational stories of pancreatic-cancer survivors: (check it out
here).
- posted by Paul
Paul is pretty sleepy today. Spent much of his time surfing the web, and eating lots of fattening foods that Cindy puts in front of him. As of 9:25 p.m., he now weighs 186 lbs. (up 7 lbs. from post-double-chemo treatment). Of special note: he still has all his hair.
Chemo went well today. Paul is just fatigued and has had a long nap this afternoon.
A good day all around. Paul went for a long drive and went to a restaurant in Napanee with a friend for lunch.
Today Paul woke up feeling good and went for a walk with me and the dog. He is feeling fine.
Paul is still doing well today. Went for a drive in the morning, and he has been eating fairly well all day.
Paul's doing great, eating lots and only has minor indigestion and hiccups periodically. He's still sleeping a lot, but feels fine otherwise, especially compared to last weekend.
12 pm:
Just got back from Toronto, and Paul drove home the whole way. He's eating very well, both yesterday and today, and is currently not experiencing any symptoms, other than being a little tired. He is having a nap right now and we'll just have an easy day today and not do anything exciting. Here's a picture of the Princess Margaret where we spend most of our time on the 2nd floor at the Chemo Daycare, or on the 5th floor in the cafeteria waiting to be paged to go to the chemo session.
4 pm: This morning's chemo session went well. Because we had done the blood test in Kingston yesterday, his appointment started
at 9:30 am instead of 11 am as he was originally
scheduled. After about an hour he was finished, so we went home and everyone had lunch and a nap.
Right now he is feeling fine and is eating well.
7 am: Paul's feeling 90% better, but still a little tired. Went for blood test this morning to measure the white blood cell count, and the lab is going to fax it to the doctor's office in Toronto. If the white blood cell count is too low then the chemo session is off tomorrow.
9 am: Paul feels okay today and has eaten a big bowl of cereal. Here is a picture of him with his two brothers, Vic and Frank, at the hospital getting his first round of chemo.
8 pm: Paul is feeling much better and ate a lot today, yay! We went for a short drive this evening, and had a quick visit from Frank too.
1 pm: Paul feels about the same as he did yesterday, and is still very tired.
7 pm: Paul ate KFC and went for a 15 min walk and is feeling better, but still tired.
9 am: Paul woke with heartburn again, but otherwise he's just feeling somewhat tired. Today is supposed to be the lowest for the white blood cell count, and should start to rise again in the next couple of days.
8 am: Paul threw up again last night at about 1:30 am, and then he slept fairly well. He was up at 6 am to take his medication, and now he is sleeping some more. He said he no longer feels queasy.
6 pm: Paul's feeling somewhat okay. He hasn't thrown up any more, his indigestion is gone, and the hiccups are under control. He's eating, although not as much as on a normal day. He is fatigued and we will both just take it easy tonight.
Paul's been feeling queasy all day. He hasn't eaten much, and has thrown up once, at 7 pm. He's been hiccuping alot. After he threw up he felt much better, and is no longer feeling ill.
7 pm: The first chemo session went well. Paul is not feeling sick right now, just
a little tired. He is eating normally and had a short nap when we came
home.
Paul is still feeling good and eating well. He's put back on a couple more pounds. We spoke with the Oncology nurse today, Marcia, over the phone and she gave us a lot more information and answered most of our questions. We have all the appointment dates and times sorted out for the next month or so, and all the bloodwork needed to be done too. So many people have made generous offers to help, we thank all of you. Now it's just a waiting period and a countdown to the 19th ....
Paul was given prescriptions for Tylenol 3's, anti-nausea medication, and enzyme medication for digestion. The Tylenol was prescribed to help the pain in his stomach, the other two were to help his appetite and digestion. The doctor said to use the last two as needed, however Paul has only needed to use the Tylenol so far. Now that he doesn't feel uncomfortable, the food smells don't make him nauseous and he's been eating very well! Right now he's at the correct weight for his height, however we want to add on a few pounds before he starts his treatments.
Met the oncologist, Dr. Malcom Moore yesterday. He confirmed that the biopsy showed cancer in the liver, and that indicators show that it came from the pancreas, and therefore Paul has pancreatic cancer. The doctor is putting Paul on 2 months of chemotherapy to start. His focus is to initially shrink the tumors as much as possible. We will be at the Princess Margaret every Friday starting March 19th, so that Paul can have his treatment. The doctor feels that because Paul is so young, strong, and healthy in every other respect, he is going to put him on a more rigorous treatment. So every Friday he will receive gemcitabine, and then one Friday of every four he will receive an additional dose of cisplatin.
We had a long day and saw doctors, dieticians, and social workers, and they were all very extremely efficient and organized at Princess Margaret, we are very pleased that we decided to have the treatments there. Also, they all told us that it is VERY important that our life remain as normal as possible, so that it is as stress-free as possible, and that will help to get through this.
Good articles to read:
Lance Armstrong
Sherry Abbott
Good Stories
Helping
Mary called to say that the biopsy did confirm that Paul has cancer in his liver. She has scheduled an appointment with an oncologist at Princess Margaret for Thursday.
No news yet. We tried emailing the assistant, and then phoned her, but she is away until Monday according to her voicemail message. Hopefully they will get back to us on Monday.
Paul had his fine needle biopsy on his liver today, and it went fine. We will know the results in
7 to 10 days. He is in no pain, and just has to rest a lot for the next 24 hours. It was a local anesthetic, and he was awake and talking to the doctor during the procedure. It only took 20 minutes and they took 3 samples.
Mary called to say that a biopsy has been rescheduled to an earlier appointment in Toronto for Tuesday, Feb 24th, at 9:30 am.
Mary called to say that a biopsy has been scheduled in Toronto for Thursday, Feb 26th, at 8 am.
Had appointment with Dr. Taylor at 3 pm in Toronto. He told us that in addition to the tumor on Paul's pancreas, there were small spots on his liver. He showed us the CT scan on his computer, and where the spots were. He gave us a CD of the scan to take home with us. He decided it would be best if a biopsy was done first on these spots, and then we'd decide what to do from there.
Went to Toronto to have another ultrasound and CT scan done at Toronto General Hospital. Met with Dr. Bryce Taylor's assistant, Mary. She remembers Paul from an appointment he had 15 years ago at the Toronto General Hospital when he was getting shots for his trip to India -- what a memory! Wednesday's appointment on the 18th was rescheduled to Monday the 16th.
Paul has been communicating with a Dr. Bryce Taylor and his assistant at the Toronto General Hospital to find out if he should or could get a second opinion from Dr. Taylor. Arrangements were made tentatively to see Dr. Taylor on Wednesday Feb. 18th.
Went to see Dr. Jalink at Hotel Dieu Hospital, 4th floor, Johnson wing. He confirmed that there was a tumor on Paul's pancreas. He recommended doing the Whipple procedure. He did not think a biopsy was necessary on the pancreas, because Paul is so young that he would not trust the result that came back if it came back benign.
CT Scan was done at Kingston General Hospital. Paul visited Dr. Lotfallah, who told him of the spot on his pancreas, and scheduled an appointment for him with Dr. Jalink at Hotel Dieu Hospital.
Paul went to emergency at 1 am at Kingston General Hospital because the pain in his stomach was too strong and he could not sleep. The suggestion by the previous doctor did not work.
Paul went to a walk-in clinic because his stomach hurt and it was not going away. Originally he thought he had pulled a muscle lifting some heavy boxes, but it had been more than a month and the pain had still not subsided, and in fact felt like it was worse. However, the pain was not in any one location, and since his stomach was gurgling the doctor thought it might be constipation and suggested a stool softener.
