As you will see, it is quite an onerous task keeping friends and family up to date, while maintaining a sense of stability at home.
Update # 1
Hello Family and Friends,
For those of you who may not already know, here is some information about what has been going on with Ron. At the end of this past July, Ron began having trouble opening his mouth (tough to believe I know tee hee) but it became more and more painful to say the least. As a result, he got a variety of treatments for what we thought was trouble with his Tempro-Mandibular Joint (TMJ - or jaw in my terms). He went to get chiropractic treatments, acupuncture, active release, massage and physiotherapy.
After two months I finally insisted on our family doctor (who promptly gave Ron shit for not being there 2 months prior). Anyway, Dr. Pallopson immediately called our local otolaryngologyst, Greg Price-Jones, (ear, nose and throat specialist) and got Ron an emergency appt. A MONTH LATER!!! I guess that is a sign of how very busy our doctors are right now. Ron saw Greg on Nov. 23rd and because Ron couldn't open his mouth for an examination, Greg scheduled Ron for exploratory surgery and a biopsy on Nov. 29. He told us that the worst case scenario would be that it would be cancer, but that it would be treatable and over 50% curable
On Dec. 4 Ron also had a CAT scan done (no results yet). On Dec.12, we were notified that the biopsy results were "inconclusive" and as such, we are now being sent to a Dr. John Irish at the Toronto General Hospital (apparently he is one of the best in the field of otolaryngology and neck surgery). He will further examine Ron and probably re-biopsy. Then, On Dec. 20 we have an appointment at Princess Margaret to see a radiologist so that everything is in place IF needed.
So, are you confused yet??? We are and of course frustrated too. As they say, the waiting and the not knowing is the hardest part. The boys know that a multitude of testing is being done but that we know nothing definitive as of yet. Because a lot of you have been concerned (and we are so grateful for all of your positive thoughts and best wishes) I thought it best to start regular updates with e-mails, as I really am finding it hard to notify everyone by phone. In the middle of all this, we are moving forward with the other entire multitude of tasks to be done for the holiday season...but I am on top of all that (I think).
Our co-workers and bosses have been "over the top" supportive so far and we have both been told that any time that we need to take off of work will not be any problem at all. We are so lucky to have such good family and friends. Anyway, I am getting way ahead of the game (which I really try not to do) but thought you would all appreciate an update. I will continue to write as soon as we know anything. Take care and I will write again soon.
Sylvia, Ron and Boys
Update # 2
December 17, 2006
Well here is the latest and unfortunately it is not good news. On Friday Ron and I saw Dr. John Irish (who is apparently the top in otolaryngologyst in this country) at Toronto General Hospital. After examination from 3 people (2 doctors and one student), an examination of the CAT scan disk that we brought with us, and another biopsy that Dr. Irish took right then and there, we were told that he believes that Ron truly has cancer, and that he believes it is in stage 4 of 4. That being said, he didn't want to make any firm decisions about treatment until he puts all of the pieces of this puzzle together. He wants the biopsy results (slides) from Orillia as he feels he may be able to see "more" than they did in the pictures here because he really knows this exact kind of cancer.
He called it Squamous Cell Carcinoma. He saw that the CAT scan showed a "scattering" of involvement with the lymph nodes in Ron's neck as well. If Dr. Irish's instincts are accurate, Ron will undergo 6 weeks of radiation (5 days a week), so he will stay in Toronto during the week and come home on weekends. He will also need 3 massive rounds of chemotherapy (on day 1, 21 and 42). Once again, Dr. Irish told us that he cannot make a final decision on treatment until he knows every detail and he is working on that immediately. He also ordered an MRI and a chest x-ray to rule out any other problems. His final message to us was that he was going about this as...treatable and curable, but the road to recovery will be nasty and very tough. Ron and I both agree that WE CAN DO THIS!!!!! On Wednesday (Dec. 20) we meet with the radiologist at Princess Margaret. We will update you again after that appt.
The most frustrating part of all of this is that over 90% of the people that get what Ron has, are smokers and HEAVY drinkers...neither of which apply to Ron (although we both may become heavy drinkers now...just kidding). Anyway, whether we like it or not, we have to play the cards we are dealt and this hand sure is crappy. Ron has been quiet since our trip to T.O., and I know that he is terrified (as am I of course) but he says "we'll do what we have to do to fight this and win!!!!!" Well, that is it for now and I will keep you posted.
P.S. - if I sound like I am babbling....I am! I am having a hard time getting my brain wrapped around all of this while remaining coherent. Sorry!
Sylvia, Ron and Boys
Update # 3
December 20, 2006
I am writing in colour because Ron and I feel that a bit of colour is back in our world. It is kind of weird to say that any news that one gets about one's cancer is sort of good news but that is how we felt yesterday at Princess Margaret. We met with radiologist Dr. Bernard Cummings and his associate Dr. Lee and even Dr. John Irish popped in to say hello. Anyway, the team at Princess Margaret feels that Ron's cancer may not be quite at level 4 yet, and that the large lymph nodes are probably not involved but that some little nodes could be. So, here is where the "good news" comes in. They feel that Ron will be just fine with radiation treatment alone and no chemotherapy.
He will have an MRI done on Jan. 4 at 10:45 p.m. ( no that is not a typo...it really will be at night...they almost work around the clock in T.O. because there are so many people needing immediate MRIs done). Once they have those results, they will know for absolute sure what the total treatment regimen will be, but for now we are going with the radiation only! They are planning on 4 weeks of radiation but twice a day instead of once a day for 7 - 8 weeks. We have a multitude of appointments over the holidays to get his regimen set up, his mask made (it is so that his head can be stabilized on the table and not move at all during radiation), his blood work done, to see a dentist at Princess Margaret that specializes in oral and dental care throughout radiation, and then finally to get a G-tube inserted so that if his throat gets too sore to swallow he can feed himself through the tube temporarily. Once all that is done...we will be ready to go.
They are gearing for early January to get started. He will stay at the Princess Margaret Lodge that is in the old Princess Margaret Hospital which is located at 545 Jarvis Street. He will be shuttled back and forth from the lodge to the hospital for all of his treatments. They told us that the first week or two Ron will just be bored and tired. By the third and forth week he will get a VERY sore throat, his skin will feel like it is sunburned, and food will taste awful. The sore throat will last for at least 2 weeks after radiation stops and he will be really tired.
One of the main challenges is to keep his nutrition up, hence the G-tube. He is lucky he has a wife with a good German background because if there is anything that we are good at, it is food!!! His only request was that I do not try and sneak peas into anything that I puree (he hates peas). So, that is it for now but all we can say is that if the above "good news" continues to hold true, then please, please, please, keep up the faithful prayers, positive thoughts and best wishes because they are working so far.
Thanks!!!! You have no idea how much all of your offers of help etc. mean to us and be reassured that if there is anything we need, we will call upon your kindness and generosity.
Sylvia, Ron and Family
Update # 4
December 27, 2006.
Well here is update # 4 and we haven't even started treatment yet. Today Ron, Corey, Brodie and I headed off to Princess Margaret at 6:00 a.m. for an 8:30 a.m. appt. Ron and I thought that it was important for the boys to tag along so that they could meet some of the doctors and our liaison, and to see where he would be and what he would be having done during treatment.
So, off we went thinking we had lots of time....NOT!!! Once we hit the King City area of the 400, the highway was covered with sheer ice and a multitude of cars in ditches and spinning out all over the highway (we later heard that there was 200 accidents within a couple hours) so needless to say the travel was slow until we got to the 401 and that put us behind. In our favour, the parking lot at Yorkdale was open and we hurried to the subway and got to the appt. only 5 minutes late...not a problem.
First off, they took us all to the room where they made Ron's radiation mask (that fits very snugly over his head and shoulders and that is put in place to bolt him to the radiation table so that he can't move at all...they want the radiation to be perfectly placed) and we got to watch that being made...very interesting. Then we had to wait for 1 hour for the mask to harden and shrink before they could do a final fitting and a run through planning and practice scan. Ron was glad of that practice run because now he knows exactly what will be involved when the real radiation starts and he is comfortable knowing what it will be like.
We were then all involved in an "education" session that informed us of everything that will happen including dental appts., and dental care, radiation side effects, lodging, nutrition, over-all care and so on. That was great for the boys because they got to hear everything first hand and could ask questions if they wanted (they didn't). Once that was done we went upstairs so Ron could get a final chest scan and talk to the MRI team. Since he has worked with metal all his life and has had metal in his eyes in the past, they had to do an eye x-ray to ensure that there wasn't any metal shards in his eyes that could be a problem during an MRI...he was clear and so the MRI will still be on Jan. 4.
Once all that was done we headed home. It was great because his chest scan wasn't scheduled until 3:30 but we went upstairs at 11:45 a.m., and mentioned that we were available if by chance there were any cancellations earlier in the day and she took him right away so we were done 3 hours early...yahoo! So, now we wait again until they examine the new planning scan and decide upon a start date. The Princess Margaret Lodge had Ron's name and will book him in as soon as they get the start date from PMH.
For the rest of the holiday we are going to relax and enjoy time with family and friends. In the meantime take care and enjoy the rest of the holiday season. Thanks once again for all of your thoughts, prayers and support...we can't even begin to tell you how much they mean to us! Fondly, Sylvia and Ron
Update # 5
On January 4, Ron and I headed to Toronto for the final pre-treatment appointments. He visited with a Princess Margaret Hospital (PMH) dentist named Dr. Lee and she was fabulous. She spent a long time with us explaining all of the side effects of the radiation that will affect his mouth and throat and exactly when during the treatment schedule the side effects will start. He will experience things like “sunburned” skin on the outside, a raw and blistered throat that will be painful, a sticky (mucousy) mouth to start with and then a dry mouth, loss of the sense of taste, difficulty swallowing and resultant weight loss that they will watch very carefully so that it will not became too drastic (that is when the feeding tube will come into play). Most everything will go back to normal within 4 months to a year following treatment except the dry mouth because the saliva glands on Ron’s left side will be destroyed by the radiation.
Dr. Lee examined all of his teeth and was very happy with their good condition. She will follow up with him regularly throughout the treatments and afterwards for about 1 year to make sure that his teeth stay as strong and as healthy as possible. They made a fluoride tray (like a mouth guard) for his teeth and he will have to treat his teeth with a non-acidic fluoride every day…probably forever. Getting the trays to make the moulds into his mouth was a huge challenge and I was afraid the poor little dental assistant was going to see the “wrath of Ronnie” when she accidentally pushed a little too forcefully to get his mouth open. He almost jumped out of the chair and then started into fits of laughter because of the distressed, apologetic look on the poor assistant’s face.
Six hours later (at 9:45 p.m.) he was taken in for his MRI which he found very loud and somewhat disturbing only because he wasn’t able to move or swallow for about 45 minutes (of course as soon as they told him not to swallow…that’s exactly what he wanted/needed to do). Anyway, he made it through, which I was so proud of him for, because apparently many people do not (they can’t stand the noise or the restrictions of the machine…it can be very claustrophobic).
We will get the results of the MRI in about a week and by Monday we should know about the radiation start date. Everyone (and we really mean everyone) at PMH has been fabulous…extremely understanding, informative, kind and helpful…we couldn’t ask for better care. That being said, we are now at the point where we want to plough forward and get on with the treatments (the sooner we start, the sooner it will all be over). I know we’ve said it before, but the love and support from all of you has done so much to keep our attitude positive and to reinforce to us how lucky we are to have such great family and friends. As always, we’ll keep you posted.
Sylvia, Ron, Corey and Brodie
Update # 6
Monday January 15, 2007.
"We are ready to Rock and Roll!!!"
Finally!!! We got a radiation start date...next Monday...January 22 at 10:05. We are assuming, because we haven't heard anything different, that the 2nd cat scan and the MRI mustn't have shown anything new or different because the treatment type and schedule did not change from the original plan (radiation 2X a day for four weeks). So, to quote Ron, "We are ready to Rock and Roll!!!" I will go with him on Monday and spend the first day and evening with him and then he will stay down for the rest of the week. He will come home on Friday the 26th in the late afternoon. They also have him scheduled to have the G-tube put in during the first week and that means he'll be staying at Toronto General for 2 days while that surgery is done.
His radiation treatments will continue during those two days...they will just shuffle him across to Princess Margaret for the treatments and then back again to Toronto General. They keep him for 2 days to make sure the site heals and that he gets all the info. he needs about tube feeding etc. At this point Ron really hopes he won't ever need the tube (some people never use it and some depend on it 100% - all depends on the person and how sore their throat gets) but it will be there just in case.
I have to say, that today when I got home and he shared the start date news with me, it was the most "animated and energized" I have seen him in a while...he is truly ready to get on with it. As always, I will keep you all updated with any new information as it comes. We continue to thank you all for your positive thoughts, good wishes, helpful gestures and prayers. Without them I can't imagine where we'd be. LET THE GAMES BEGIN!
Sylvia, Ron, Corey and Brodie
Update # 7
January 22, 2007.
Today was the day that Ron’s radiation was to begin. After a frustrating trip to Toronto that was crammed with traffic that took twice as long as it should have. It was totally infuriating because there was no obvious reason why the traffic was crawling along at a snail’s pace. We made it to Princess Margaret only 10 minutes past our appointment time (which was 10:05 and we left Orillia at 7:00 a.m.).
We were immediately put at ease since the radiation “unit” (table) that Ron was scheduled for was running 45 minutes behind because it wasn’t running properly. Since we had time on our hands all of a sudden, we decided to write down all of the questions we had for the doctor and then paged Rhonda Beck, who is our liaison (she answers all of our questions or finds out the answers for us). Just as we were about to do that, Ron’s name was called and he was notified that Dr. Cummings, his radiologist, was on his way down to talk to us. For me, panic and warning bells began to set in. I found it strange that he would want to see us…but Ron, who sort of just goes with the flow, didn’t really think anything of it…until I opened my big mouth and muttered, “This makes me nervous.” Then of course Ron started to think about the multitude of reasons why the doctor would seek us out (I had already thought about them all and was really anxious).
As it turns out, Dr. Cummings goofed when booking the radiation and had booked two separate treatment schedules for Ron so that all of the bases would be covered. One was once a day for 7 weeks with chemotherapy as well (which is what most people have to have), and one was 2 times a day for 4 weeks. Then, when he saw all of Ron’s test results (MRI and second cat scan) he firmly decided that the absolute best route for Ron was to stick with 2X a day for 4 weeks, but that is not what the radiation scheduling team got and so…Ron’s radiation does not start until Wednesday. Once we heard this, we were too relieved to be upset about the delay.
Dr. Cummings told us that Ron’s cancer was between stage 2 and 3 because there are only 2 small lymph nodes involved and even though they will be treated, they are quite insignificant to the big picture. My immediate thought was to bring Ron back home with me, and return on Wednesday, but after the harrowing battle with traffic that day, he just wanted to stay put.
He has a dentist appointment at Princess Margaret tomorrow anyway and he just felt that he wanted to get settled at the lodge, meet his room-mate and some of the others at the lodge, figure out the routine and shuttle schedule, and just try to relax while waiting for Wednesday to arrive. So, that’s what we did (selfishly, I would rather have brought him back home with me but of course my main concern was that he be as comfortable and as stress free as possible and that meant respecting his choice and leaving him there).
He has his radiation schedule for Wed., Thurs., and Friday and they will give him next weeks schedule in a day or two. Once he has a feel for the length of his treatments, and the whole routine etc. we will get in touch with those of you who have volunteered to be drivers…I am pretty sure we have this Friday covered. I went to the lodge with Ron (he wanted me to see where he would be staying), and helped him unpack and get settled. Once that was all done, Ron was “toast”…he needed to have his nap, and he was already getting concerned about me driving home in the rush-hour and the dark so he wanted me to start on home. So, I jumped back on the shuttle bus, headed back over to Princess Margaret where the car was parked and headed home to Brodie, my parents and my sister. They were all waiting for an update and it was nice to see them when I arrived home.
The trip home was uneventful except for the few OTHER drivers that I cursed in the downtown Toronto area because of their crazy driving. Since I got home, I have called Ron once and e-mailed him twice (think I miss him already…YES!!!). Anyway, that is the latest for now and I will let you know what is going on later this week. Please know that all of your encouraging thoughts and prayers continue to bolster our spirits and support us in the most positive ways. Thanks!!!
Fondly, Sylvia, Ron, Corey and Brodie
Update # 8
January 23, 2007
Ron's first day was fine. He went for a couple walks...one from the lodge to PMH for his dentist appt. It took about 20 minutes or so and he said he enjoyed the fresh air (in Toronto?????). He discovered the Keg Mansion on the corner (he loves that restaurant), and got an appointment for his G-tube surgery...Sunday afternoon at 2:30 in the afternoon.
Ron says the food at the lodge is good, and he is trying to eat as much as possible...they told him to "bulk up" and not worry at all about calories....he needs every extra pound he can put on (which is the opposite to what he has always been told). He says he had trouble sleeping last night because I wasn't beside him (sweet eh?), but when he is home, he sometimes goes to sleep in Corey's bed because apparently I snore (I don't believe it for one minute but Ron swears it is true). He should be thankful to get a break from the "snorer".
So, it seems like he had a pretty good day in the big city and is ready to take on the radiation machine tomorrow. He has an e-mail address that you can send notes to and access to a computer at the lodge. His e-mail address is email@example.com He probably won't have the time or energy to answer you, but I am sure he would love to hear from you. In the meantime, keep the positive thought vibrations coming, and we will update you again tomorrow.
Fondly, Sylvia and Family
Update # 9
January 24, 2007
Hello Friends and Family,
I just got a report from Ron and it mostly goes like this...I am not sharing EVERYTHING he wrote of course (tee hee).
Well, I had my first two treatments today, and everything is fine so far. The weather here is crisp and cold. My mouth is getting harder to open to eat hard foods, so I'm sticking with the soups, Jell-O, Rice pudding (not as good as Jan's) and Resource drinks which is a supplement drink like Ensure.
Tomorrow, I will go the nurse's station and see about upping the pain meds...the new one they have given me only lasts about 1 to 2 hours and then the pain is back. It's a good thing I brought my hot water bottle [Ron has been using a hot water bottle for quite some time now to sooth the pain]. Well, I'm going to get ready for the hockey game and will talk to you later.
I'm getting emails from different people which are nice. Reading them helps fill the time.
It seems to me that he is doing OK so far. As long as he's got the Leafs on a TV nearby, he can avoid any kind of anxiety attacks. The rice pudding that he is referring to was made for him by my principal, Jan Rutherford and he says it was the best he ever had...the pudding I mean. Some of you have been asking me about his mailing address at the lodge. It is:
Ronald J. Fox
The Princess Margaret Hospital Lodge
Room # 301
545 Jarvis Street
Well, that's about it for now...stay tuned for tomorrow's update.
P.S. - if you get sick and tired of hearing from me, just deleate me.....not always so easy when we are face to face but I'll never know if you ignore me over the internet...I am sure I go on and on sometimes but it is good therapy for me to put things in writing (besides, Ron is not around to hear me rant).
Talk to you all soon.
Love, Sylvia and Family
Update # 10
January 25, 2007
Just a quick note today:
Ron is now done one tenth of his treatments. Because he is being treated twice a day, the side effects are setting in quickly. When I spoke to him this evening, he was not all that talkative because his throat is already getting sore. His stomach is somewhat upset because of the new pain medication he is on, but the doctor said it takes a few days for his body to get used to them. As a result, he is only eating in small bits but more often. He continues to stick with soups and "easier to swallow" foods.
He says that the actual treatments only take about 10 minutes so he is in and out of the treatment rooms quickly. He is very much looking forward to getting home tomorrow, and to getting some good sleeps in his own bed. My sister Monica and her hubby Stewart will pick Ron up tomorrow at 3:00 right at the hospital and bring him home. So, I will sign off for tonight and send out the next update over the weekend. TTFN (ta ta for now). Keep the faith and positive thoughts flowing. Thanks!!!
Update # 11
January 27, 2007
Well, it is Saturday evening and Ron has been home for 30 hours. In those 30 hours, he has had a huge turn for the better. When he came in yesterday our first reaction was shock. He looked TERRIBLE. He was horribly nauseous, headed straight for the bathroom to throw up, and came out, cried and pretty well collapsed on the couch. Needless to say Brodie and I were all beside ourselves, and feeling helpless...as was Ron.
Once Ron relaxed, realized he was home and that all was O.K. I knew I had to get to the bottom of what was going on....it seemed that he got feeling so bad way too fast. His number one complaint was that he was too nauseous to eat, and he wasn't keeping much down nor was he wanting to eat at al,l which is just totally unacceptable (since July, he has lost 20 lbs). In the meantime my mom (who is pretty much a saint in our eyes because she always seems to have a solution...I think she must have been a doctor in her other life) called to see how he was doing and upon hearing the panic and tears in my voice immediately demanded that I give him Gravol. (dah...why didn't I think of that right off???). I did, and half an hour later gave him a protein shake made with ice cream, banana, egg etc. Half an hour after that he said, "Boy, I feel a lot better". (Yahoo)
Apparently, the new pain medication that he is taking (Dilaudid), cause nausea and so does radiation. The doctor in TO said it would take a few days for his body to get used to the Dilaudid so Ron didn't say any more about it...he must learn to suffer less and get (even demand nicely) the help he needs from all of the medical support teams he has at his fingertips.
Since last night he has been taking the Gravol every 4 hours with his pain medication and I have been feeding him every hour (little bits but often). He had 3 good meals and a variety of snacks today and feels WAY better both physically and emotionally. Tomorrow (Sunday) we will head back to Princess Margaret for a 2:30 admittance time so that they can prepare him for the surgical insertion of the G-tube (feeding tube).
I will stay with Ron in TO over night on Sunday night and come home on Monday night assuming that all goes well with the surgery. He will continue with his radiation treatments as scheduled (2x a day), and will come home again of Friday. As of right now, he has a ride home on Friday with a friend who works right downtown, and he will pick Ron up at 3:00 right after his 2:45 radiation treatment and will bring him straight home. With any luck, traffic will be good (what is the chance of that on a Friday afternoon???????) and he will be home for dinner.
Although he continues to agree that the Lodge is full of great people and the staff is great, it is also quite a depressing place because everywhere he looks there are sick people (I guess it is not quite Club Med.). Anyway, we are so glad that he has had a turnaround since he got home and I will be at his "review clinic" with his radiology team on Monday to ensure that he lets them know how he is or isn't feeling, and that he remains up front with them about all of his symptoms and side effects of treatment (apparently men try to tough it out and deal with the pain, nausea, weakness, depression etc. etc. without asking for help....who would have ever guessed that about men????????).
So, I will sign off now and will get back at ya a.s.a.p. (probably on Tuesday or late on Monday). In the meantime, keep the faith and positive thoughts flowing....we feel them all the time and couldn't imagine being without them. Take care.
Sylvia, Ron and boys.
Update # 12
January 31, 2007
Well, Ron and I spent Sunday afternoon, Monday and Tuesday at Princess Margaret as Ron had his G-tube (feeding tube) inserted on Monday morning. That surgery went very well (quick and simple), and then the rest of the time was spent healing, going back and forth from his room on the 17th floor to the 2nd layer of the basement for radiation treatments and meeting with various doctors and support staff.
I was allowed to go into his radiation room (he is always treated on Unit # 2) to see exactly how the procedure goes and then of course had to get out while the radiation was happening. The procedure goes like this:
- He gets up on the "bed" (its more like a slab) and lies down and 2 radiologists have him shimmy around until he is in the right spot which includes positioning a support under his neck.
- He has a tiny dot that they permanently tattooed on his chest that they use to line him up in the exact same position for every treatment.
- They place his "mask" over his head and shoulders and snap it into place so that he cannot move.
- There are computers inside the room that they set up for his exact "beam" locations.
- They turn on some soothing music and then leave the room, close the doors that are more that 1 foot thick and go together to 2 computers that they operate in unison.
- Ron's treatment includes a total of 8 "beams". The first 2 are very fast (under 10 seconds) and I am pretty sure that they are treating the 2 small lymph nodes that are involved. As soon as those 2 are done, they open the doors, go back in and reset things in the room in order to treat the actual tumour. That involves 6 beams that are set at different angles and they all last anywhere between 25 and 45 seconds. Then, they once again come back out, close the door, proceed to their computers and do their thing until the next 6 beams are done. After that, he is finished until the whole thing is repeated 6 hours later in the day.
When we weren't at radiation, Ron was learning how to use his feeding tube (pretty easy process), and resting, and I was busy making lists of foods that I can be making for him and making note of all the nutrition tips that Ron's dietician shared with us so that I can "bulk" up his calorie intake. She told Ron that he should be getting approximately 2200 calories a day (wouldn't I like to be able to have that many calories...do you know how many chocolate bars that is???).
I spent time in the PMH library researching nutrition etc. and rested when I could. We also had a good session at the radiation review clinic with Ron's team of doctors, and were able to get a handle on his medications and what we can do to prevent the nausea that they were causing. He has since had his pain medication changed once again from Dilaudid (a morphine type of drug that is 8x stronger than regular morphine) to just morphine. Ron discovered that the morphine worked just fine (better actually) for him because that is what they were giving him after his surgery for the G-tube. If they need to bump up the strength later then he can go back to the dilaudid.
They also, guided by my subtle prompting, discussed with him the fact that what he is going through is a HUGE stress and worry and that it is O.K. to ask for help to deal with that too (better coming from them than me). It may be that he will eventually need some sleep aids and possibly even a temporary anti-anxiety medication (we'll wait and see).
Ron's (our) room on the 17th floor of PMH was a beautiful, private room (except for the reason we were there of course). It had with a cot for me and an absolutely beautiful, panoramic view of the city (including the CN Tower, the Roger's centre, Lake Ontario, and the entire west side of the city). Whenever we could, we would stand together and enjoy the view and the sunshine which we actually had for one entire day.
Today (Wednesday) went well for Ron. He is now going to stay at PMH between radiation appointments so that he can rest more and travel to and from the lodge less. There are beds available for him, at the radiation clinic, to rest on while he feeds (uses the G-tube) and waits for his next treatment time. I think that will work out better for him and he won't get so exhausted.
So, that is it for now and I will keep you posted with any new news.
Still feeling the love, positive thoughts and prayers....thanks for all of that from the bottom of our hearts.
Fondly, Sylvia, Ron, Corey and Brodie
Update # 13
Feburary 2, 2007
Yahoo!!!!!!! It's Friday and everyone is home. Corey came home from university to spend the weekend with us, and Ron has arrived home too. They both arrived at about the same time (between 4:30 and 5:00). Our friend Dane was able to pick Ron up when he was done his treatment, and had no trouble getting home in a timely fashion.
I was fairly anxious all day because of the shape Ron was in last week when he got home. But...today was way better. Although he was tired, which is normal, he was really hungry and wanting to eat and was way more talkative than last week. He was super glad to be home, but was not in the desperate state that he was in a week ago. He is now almost half way through and is feeling more comfortable at the lodge. He is complaining about the food at the lodge and says that sometimes even the "cafeteria" smells turn his stomach as soon as he walks in. So, he has asked for a list of foods to take back with him.
Tomorrow I get to go grocery shopping to fill up 3 pantries....ours at home, Corey's at school and Ron's at the lodge. I know what you are thinking...."glad it's you and not me" but I am actually looking forward to getting food for my guys, especially Ron, whom I had to almost force to eat last week. Hopefully he will continue to be able to swallow for a while longer before he will have to depend more on the feeding tube.
I rented movies on the way home and the 4 of us had a calm, quiet and cozy "Friday night movie night" in front of the fire in our den. Ron agreed to have a milkshake, so the boys and I made one for everyone and Ron actually got all of his down and kept it down. That in itself is heartening because we are pretty sure they have all of his medication under control now. So, all of that being said, we are looking forward to a relaxing, restful weekend in order to gear up for week 3.
Love to all of you and thanks of course for your continued support.
Fondly, Sylvia, Ron, Corey and Brodie
Update # 14
Feburary 7, 2007
Well today Ron finished 65% of his treatments...over half way done!!!!!!!!!! It is hard for me to wrap my brain around that...in one way it seems like he's been in active treatment for an eternity and in another way I know it will be over before we know it. I was supposed to go to Toronto to spend the day with him today (to break up the week for him) but when I awoke to highways closed and school buses cancelled I knew that he probably wouldn't let me come down. So, I called him at 7:00 a.m. and told him what was happening in our neck of the woods and he told me that no way was I to take the risk and try to make it down there. So, off I went to school just to keep myself busy enough that I wouldn't feel guilty and sad about not being able to go. I spoke to him again tonight and he reported that:
- his throat was getting progressively more sore, raw and "sandpaper" like
- his mouth was beginning to get sore as well and it was getting harder and harder to get his fluoride trays into his mouth to treat his teeth
- his dentist appointment today went very well and they are please at the continuing good condition of his teeth and the way Ron is taking care of them
- he is still taking food by mouth but using the g-tube also ( "feeding" through the g-tube takes up a lot of Ron's time, but he hasn't had ANY trouble learning the process to feed and hydrate himself)
- his mouth constantly and quickly fills with "ropy" saliva that is very annoying...he tends to spit that out rather than swallow it (sounds gross I know but spitting and rinsing prevents further nausea)
- he has been given a mouthwash/gargle solution that he can actually swallow that will numb his mouth and throat for short periods of time (hopefully long enough to eat regular foods)
- his most recent grocery requests are for vanilla ice-cream and popsicles so I will stock up on those for the weekend
- he is sleeping better at the lodge now (getting used to all the sounds of the city and the bed)
- his skin is beginning to feel and look "sunburned" but using unscented Lubriderm as suggested by PMH helps with that
- he is having to shave less in the areas of his face and neck that are being radiated
- he is still not getting enough calories to sustain his present weight that is already 23 pounds lower than it was in the summer (just as an aside, I often worried a bit about Ron's previous weight, thinking that he would probably be healthier if he lost 20 pounds or so but now that he has, even though I know it is for the wrong reason, I wish he was back to being my stalky, strong construction guy)
- he is eager to get home on Friday
I would like to add to all of that, that even though he is getting weaker and more sore physically, he seems to be getting stronger emotionally...he knows that he is in the home stretch. When he is home on the weekends, especially as the radiation builds up in his body, he really only has the energy to eat, sleep and watch a bit of T.V. Once the side effects of the radiation begin to wane, he will begin to be up for visitors and I will be sure to let you know when that is (the doctors said it will take a few weeks after his radiation treatment are over)
So, that is the latest and I am pleased to say that we are all coping as well as can be expected. With all of our well wishers and people who pray for us, we feel constantly blessed and protected. Thanks go out to you all as always.
Fondly,Sylvia and Family
Update # 15
Feburary 11, 2007
If you are noticing that the font today in larger than usual, that is because it is 5:54 a.m. (yes, I do mean the morning) and I can't sleep. Even so, my eyes are not co-operating because they want to sleep despite the brain that they are attached to. Well, this weekend started off as all of them have so far. Ron arrived home, promptly proceeded the washroom to throw up and then greeted us. I guess the ride home is a bit tough. Once he puts all of his stuff away, which he does promptly so that he knows he's staying for a couple days, he goes to the lazy boy recliner and cuddles in.
His throat is so sore now that he really can't talk but of course I babble on like a nervous idiot. I am not sure that he is all that interested in a thing I am saying but I am hoping that as he is falling asleep while I go on and on that it is the comforting sound of my voice that is lulling him to sleep and not that he is begging his body to "hurry up and get to sleep so she'll stop talking". Once he relaxes for a bit, and I get over the shock of him losing more weight, my "nagging wife" role kicks in and I start:
Me: Can you eat by mouth?
Ron: shakes head
Me: When did you last have a feeding?
Ron: This morning
Me: Big sigh knowing he has only had 300 calories today and not nearly enough water
Ron: I was too busy to get another feeding in
Me: (in my head) Yes I know it takes a really long time to complete a feed
Me: (out loud) But you HAVE to fit it in
Ron: Nods head
Me: Do you want to try anything by mouth
Ron: Tomato Soup (it is his favourite and we could have shares in Campbell's by the amount he's eaten since July)
Me: You are supposed to avoid foods with too much acid
Ron: Nods head and shrugs shoulders
Me: (I proceed to make the soup)
Ron: (manages to get down a few mouthfuls and has to quit)
So, then what? Well, I tell him to get to his chair (as I tell the dog to get to her mat...just kidding really) but I must admit by this time my fear for his lack of nutrition and my frustration have triggered my teacher voice and I want to fix this problem. So, we get a feed set up and he sits, dozing on and off, while he watches some of his favourite t.v. shows that I have taped for him during the week (these feeds really do take forever...approx. 2 hours). Then of course it is time for Brodie and I to eat and do we feel guilty???? Well, Brodie has not said too much about all of this lately but I do know that he took his dinner plate and immediately took it downstairs with him (which we don't do as a habit) but I didn't say anything as I tried to inhale my dinner as quickly and uneventfully as possible so as not to draw attention to the fact that my dinner actually had some taste and would not fit through a tube. Ron managed to get in one more feeding before bed which calmed my soul a bit.
Saturday started out uneventfully. Ron slept in a little later than usual, got up and had a feed (by then it was noon), took some meds. and went back upstairs to lie down. We were told from the get go that he would probably sleep better during the day and that has proven to be true. While he slept I made a clear chicken soup broth (not sure why because he can't swallow it but it made ME feel better), cleaned the kitchen, vacuumed, did some laundry, returned some phone calls, read the paper, and headed out to get some groceries (does it sound like I a have an over-abundance of NERVOUS energy???).
When I got back, Ron had been outside with Brodie clearing some snow (yes you read correctly). Two weeks ago he cleared the driveway using the snowblower and because it was a nice sunny morning and he was still feeling O.K. I agreed that the fresh air and exercise would do him some good. Not so sure it was a good idea today...especially the shovelling part. Anyway, he had also unloaded the dishwasher and put some laundry in the dryer (he gets these spurts of energy and I understand his need to just do some normal chores).
By the time I got home he was doing another feed and it was 4:30. at 6:00 Ron's feed was still dripping away and I proceeded to get dinner going for Brodie and I. I no sooner got everything cooking when from the den I hear "Oh, oh...this thing is coming out". Not having a clue what he was talking about, I went to see and...oh yes, his feeding tube had slid about 6 inches out from its original spot. From all of the education we got about this tube and from what I have been told by others, I should know that this is not really a big deal...most people who have one for a long time just push it back in themselves and carry on.
We on the other hand have only dealt with this thing for 12 days and despite myself, I sort of panic. Thank goodness Annie Wihlidal gave me her number a while ago and told me I could call her any time (she is the mom of a child in my class and a nurse that deals with this kind of thing on a regular basis). So I called her, tried to keep my voice calm and my words coherent and she agreed that we should go to emerg., have them push it back in, take an ex-ray to make sure it was in the proper place and that would be that...quick and simple. Oh how I wish that is how it went. Yes, it was simple but quick...NOT! Here is a quick synopsis of how it went. When you read the next few points keep in mind that I am talking about a time span of 6 (count them) 6 hours!
- 6:30 p.m. - arrive and immediately ask for a mask for Ron because the waiting room is jam packed with snorting, sniffling, coughing patients
- 6:40 - triage
- 6:45 - register and ask to be taken somewhere less "germ filled" just to be told...we have nowhere else for him to go so they allowed us to sit in a bit of a secluded spot behind the info. desk (that is closed on a Saturday evening)
- 7:30 - taken to a bed. Ron was taking off his shirt before they even closed the curtain. He was desperate to lie down and by this point he was in pain because he hadn't taken any morphine since noon
- student nurse takes notes re: Ron's condition
- 7:40 Student nurse leaves us to wait
- and wait
- and wait
- 10:30 - a nurse named Sarah whom I had heard rushing around like a crazy woman all evening sticks her head through our curtains and says in a most concerned voice, "Have you not been seen yet?" My tired response was, "Not yet and we've been here 4 hours. I could have been to Princess Margaret and back home by now". I really wasn't snippy...I was too tired for that.
- 10:32 - in walks a Dr. Sandy Tichler (that's not spelled correctly but I know it sounds like Tiggler) who looks all of about 12 and like she really doesn't know her way around (apparently she is new).
- She asks about Ron's condition and I start to cry...I guess I was too tired, scared and frustrated to hold it together any longer. So as a blubbering mess I quickly explain Ron's recent history and tell her he is desperate for pain meds. Busy nurse Sarah (who is by far not the only nurse who is supposed to be working) comes in, inserts an I V and immediately hydrates him and gives him morphine and gravol.
- 10:45 - Ron is to be sent to x-ray to see where the tube is exactly (dah...it's in his intestines...O.K. so now I am getting cheeky)
- 10:50 - I really didn't mean to be condescending but I asked Sarah why the doctor wasn't going to push the tube back in first and then x-ray to see if it was in its proper place. Sarah said she didn't know. So, I asked to once again speak the Dr. T. When I explained to her what I knew of feeding tubes and what we had been told, she said she didn't want to chance perforating anything but could try and slip it back in if I wanted. I wanted and so did Ron...he gave me the thumbs up! With seconds (really...maybe 5 seconds) it was back in as far as it was originally and I (now in my teacher voice again) told them it needed to be taped into place. Sarah and I did that together...she wanted to be sure it was done like Princess Margaret had it in the first place and then she took us to x-ray. On the way I ask Sarah if we could do a flush of the tube (just with water) just to make sure it was working OK
- 11:30 - x-rays done
- 11:40 - Dr. T. looks at the x-rays and I can see them from my vantage point as well and it seems like she has no idea what she is looking at. Another doctor walking through takes a peek, they chat a bit and I hear them say, well, we'll do a flush and if it goes in easy then all is well and he can go home.
- 11:50 - Sarah gets us the equipment we need to do the flush and she watches Ron do it (have I said how great she was) and all seems well.
- 11:55 - another young nurse (also by the name of Sarah) comes in to take out Ron's IV and says to me, you were my grade 1 teacher. Sure enough it was a student I had taught at Orchard Park and she has been nursing for 8 years. Man do I feel old, way over-tired and haggard at this point but God bless her she says " You haven't changed a bit. You look wonderful"....and once again I am reduced to a blubbering idiot.
- 12:05 a.m. - I am on my way to get the car
- 12:20 - We arrive home
- 12:30 - Ron has crashed and I have dinner.
- Did you count them....6 hours have gone by!
Now, in the midst of all of this, Ron too had his teary moments and said, "I can't do this any more".
"YES YOU CAN", was my reply.
And then came the question that I thought might come long before now..."Do you think you could come back to Toronto with me this week? It would make this nightmare bearable." So, that is where we are in our journey. Everything is in place here in Orillia for Brodie and Kati (the dog) and for my class and students.
I will try to keep you updated from the Princess Margaret Lodge but I don't want to hog the computers (well I do but I guess I shouldn't). Ron and I will still receive e-mails from any of you at firstname.lastname@example.org but may not be able to reply until next week. After this week he has 2 more days of treatments and then he'll be home to start the recovery stage. I will be home with him full time for a while then too. I know I say it every time but I really mean it every time...thanks wholeheartedly from our family to all of you for the kind words, thoughts, wishes and prayers.
Fondly, Sylvia, Ron, Corey and Brodie
Update # 16
Feburary 12, 2007
We have had a successful day here in T.O. All went well with Ron's treatments today and the drive down was actually fine (can't believe I can acctually say that for a Monday morning on the 400/401. The weather here was fine today...a bit of sun and of course chilly. Well, today the unbelievable happened in the car...Ron actually said in out loud words that I did a terrific job of driving down....and without words he only gestured twice in the passenger seat. Once was a whole body bracing because someone a few cars ahead was going to change lanes and I guess he thought I didn't notice
(dah) and the other was a thumbing to the left to let me know I had to turn left at the lights (which of course I already knew). That is truly a record for us as driver (me) and passenger (him). he must truly be ill and/or really thankful that I came with him for the week.
He had suggested that we leave our car at home and get someone to drive us down and back...I think maybe he was afraid I'd change my mind and come home...but I have no intention of doing that unless Brodie has an emergency (but my sister is 2 doors down to handle all that ). So Ron and I reached a milestone in our marriage...no arguement over my driving (yahoo). I am going to enjoy that while it lasts because I am sure it won't.
Despite the nightmare weekend, his appointment with the doctors at clinic today went well and all is well with his feeding tube. they are not concerned with his weightloss as of yet and they agreed that his mouth was truly a mess inside with sores etc. but that was to be expected and he has mouth washes etc. to deal with all that. The "flem" that he keeps having to spit out (gross I know) is not a concern for them either as they say it is just a result of the radiation burns and the tumour breaking away (that actually made us both beam with excitement....it's working!!!!!!!!!) Anyway, once again, thanks everyone for your prayers thoughts and I will keep in touch.
Update # 17
Feburary 13, 2007
An uneventful day so far. The a.m. treatment went as usual and then we met with the nutritionist. She is going to get Ron a feed pump to use in hopes that using that will eliminate the nausea he experiences every time he has a feed. The pump will be more consistent. He will be trained to use that this afternoon when he goes for his second treatment...then only 10 more....yahooo!!!!!!!!!! the skin on his neck and upper chest is getting pretty burned now so we have started saline soaks a couple of times a day...I've already noticed an improvement.
I am getting a bit of down time while I am here...I can relax a bit while Ron sleeps. Coming back with him this week was the best decision...we are both more comfortable and less stressed. I do miss Brodie but I know he is fine at home with friends and family and I miss Corey all the time so that's nothing new.
Update # 18
Feburary 14, 2007
2007 HAPPY VALENTINE'S DAY EVERYONE
Last night I went to a support meeting for patients with the same type of cancer as Ron has. It was run by a nurse here at the lodge. Ron didn't go (he was sleeping) but I went just in case there was some info that we didn't have yet. I was so glad I went because they covered nutrition, hydration, rest, excercise, emotions, positive thinking and medication. It was not a "woe is me session" and I learned quite a bit and could share a bit.
My main concerns for Ron were excess fatigue, nausea, an over-abundance of very thick flem and constipation (nothing is sacred any more eh?) and ALL of those things can be addressed with HYDRATION. He is to take in at least 8 cups of water a day through his tube and this can be injected quickly with the syringes. He was only giving himself about 2 cups a day and he was dehydrating (that is a huge no no). He has not complained about thirst or hunger because if he is not at a treatment, he is sleeping and the thought of swallowing scares him so much that he doesn't think about food or water.
What he has to do is change his whole way of thinking around "eating and drinking"....he has to change his thoughts to "feeding and hydrating" for improved health only...never mind enjoyment in this department. All that being said, he has upped both today and is doing much better. We also changed back to Gravol instead of the Domparidone for nausea (it just seems to work better for him). I also discovered that the amount of Morphine he is taking is "nothing" compared to most...but he doesn't feel he needs to up it yet but now we know that if he has to it is no big deal at all...he is at the bottom of the prescription strength scale and has a long way to go. That was a relief for him because he knows there is much more that can be done if he gets more pain.
We went for a little walk today in the sun and he has slept less today but doesn't feel worse because of it. I have been doing better too. I get some down time to read, e-mail, visit a bit with other patients and nap all of which has helped reduced my stress level. The other thing that has eleviated massive amounts of stress is receiving loads of help, well wishes and prayers from friends and family. Ron, the boys and I are truly blessed. We are now down to 8 more treatments (single digits...yahoo).
I am so glad I am here because instead of seeing a steady decline in Ron I am actually seeing improvements because I am on top of a few things (no not that). Ron was so sweet this morning. I had sent some Reeses peanut butter cups with him a couple of weeks ago when he could still get them in and down and he hadn't eaten them. He pulled them out of the little fridge in his room and handed them over to me with the dearest look in his eyes that said "Happy Valentine's Day" without a word coming out of his mouth. It was more special than anything else he could have done or given me...just to be here is Valentine's enough.
Later in the day we bought tickets for the Princess Margaret Hospital Lottery to exchange for Valentine's Day as well. We felt it was the most appropriate way to celebrate the day. well, that is it for now and I hope everyone is well. I will keep in touch.
Love Sylvia and Ron
Update # 19
Feburary 16, 2007
I can't wait to get home today to see both boys. Reading week for Corey couldn't have happened at a better time...we will appreciate having him home and it will be good for him to be closer so he can see for himself the progression that is happening with his dad and the whole routine etc....he is better seeing for himself what is going on rather than just being told.
It will be nice for Brodie to have some company too. We just got back from the 6th last treatment (5 left to go), and will hit the highway north right after his 2:10 appointment this afternoon. The weather is great right now so I hope the travel home is uneventful with as little traffic as possible. Ron will sleep most of the way (I hope) so I can just relax and do my thing behind the wheel. The "you are doing a great job driving" phase is already over....I discovered this quickly during the times I drove him over for appointments rather than shuttling.
Ron's throat is getting progressively sorer and raw and so now even talking is very selective. Most of his meds are now in liquid form so that he can put them through his feeding tube. If they aren't liquid, I crush them; add water and put them in the tube. Constipation (I know, nothing is sacred any more) continues to be a problem. All of his medication for this problem has been upped and he endured giving himself a glycerine suppository last night (the fear of the nurses coming along with an enema spurred him on to self administer the suppository much to his horror). Low and behold...it worked and he spent a greater part of the night in the bathroom.
Today, he says he is afraid to "pass wind" (not his words...he was much less polite). Nausea continues to haunt him so I think we will up the Gravol...he is only taking half the allotted dose per day right now. The doctors also encouraged him to increase his Morphine so his throat won’t hurt as much (if it were me I would take the maximum allowed and float through the experience). He says his dreams are really weird and wacky right now and that is because of the morphine.
Despite those problems he continues to get more water each day to stay hydrated and enough feed to keep his weight from plummeting like it had been. Hopefully this weekend at home will be calm, and without any emergencies. After Monday and Tuesday, we are done the first phase of this bizarre adventure. So, I will sign off for now and will update you again soon. TREMENDOUS THANKS to EVERYONE for EVERYTHING continue to come from the hearts of the Fox family!!!!!!!!!!!!!!
Fondly, Sylvia, Ron, Corey and Brodie
Update # 20
Feburary 19, 2007
Well, the weekend was pretty uneventful (which is a good thing at this point). Ron slept well, ate enough and kept hydrated. He even felt strong enough to go to Brodie's hockey game last night (he had the early game from 6:50 to 7:00) and even though he has hardly said a word for a week because it hurts too much he couldn't help himself when at one point he thought he really needed to try and yell out "SHOOT" to one of Brodie's team-mates. It scared the "you know what" out of me because I thought something was wrong...well something important anyway. Other than having trouble keeping warm, it was a good thing for Ron to get out of the house for a little bit.
I think it helped knowing that we had 2 cars with us (Brodie drove one in) and 3 drivers (Corey came to the game as well) so that if he had to leave he could at any time.
The trip down to T.O. this morning was fine. The only slowdown was on Avenue Rd. heading to Princess Margaret. We even arrived early and they were able to take Ron earlier than scheduled which meant getting back into our room at the lodge earlier. By that time I was pooched!!! The weekend was non-stop busy for me getting caught up on laundry, shopping and a few house chores along with making sure Ron was on top of his routine of feeds, hydrating, medications, mouth washes and rinses, flouride treatments, saline soaks for the burned skin and of course naps.
The boys were great and helped me with anything I asked and blessing of all blessings, I didn't need to cook because of the generosity of my co-workers who provided meals for the boys and I. It seems like, even though Ron can't really do much, he is constantly busy with his health routine....especially feeds because they take 2 hours each and he is to have 7 a day...which never happens (there aren't enough hours in the day to fit all 7 in with everything else he has to do and then fit in some sleep as well). So, as far as visiting goes, he really is not up to it yet and even if he were, he is pressed for time. But, fear not...in a couple more weeks or so he should be turning the corner and could be ready for some short visits...keep posted.
So as I am writing to you, we are down to 3 more treatments. I know that is cheering Ron up because he has smiled more in the last couple of days than he has in a while and he had a bit of a spring in his step after this mornings treatment. He really enjoyed having the boys around over the weekend, watching the Leafs game, a fishing show, the car races and some soccer games on t.v. (not a thrill for me but that is when I was able to get some of my own things done). well, I will sign off for now and I will write again soon.
Well we just returned from getting treatment #18 which leaves 2 more to go.
At clininc we met with Dr. Cummings for a review and this is where we are headed now:
-approx. 2 weeks after radiation ends Ron's skin burn will start to heal and he will have some patches where he will never have to shave again (not a problem says Ron) -approx. 4 weeks after radiation ends his throat will start to feel much better and he will be able to start swallowing some very soft foods
- we have a check-up in two weeks just to see how things are going at home -home care will be set up just to stop in once or twice a week to check the feeding tube and make sure it is working properly etc.
-after 4 weeks or so, they will scope Ron's throat to see how it is healing and to make sure nothing untoward is going on
--8 weeks after radiation ends they will do an MRI, a CAT scan and some other tests to make sure everything is gone -they have to wait the 8 weeks because before that time the radiation is still doing its magic and there will be a lot of dead cells still there.
Thank goodness they told us that because it is possible that Ron may find/feel some lumps and bumps in the next few weeks and he is to know that it is just zapped tissue from the old tumor and not a new tumor -taste will take a little longer to come back...maybe even a year -saliva glands on the left may never work properly again but may start to work a little and hopefully the right side will not be too damaged???
-He will always have a drier than normal mouth and will always have to have water with him to aid in chewing and swallowing food
It has been a while since I have updated you because we have been spending the past few weeks continuing on the healing journey. Here is the latest:
- Ron is no longer using the feeding tube at all. He is eating all regular foods and his appetite is improving daily. He hasn't gained any weight yet but he hasn't lost any more either. Apparently that is a huge bonus as most patients continue to lose long after treatments end. I guess my "constant nagging" to use the feeding tube and then to eat, eat, eat, paid off. There were times when I was told to "let it go and quit pushing”. But did I? No, I didn't (are you surprised??) and even though it was a bit tense at times, I stuck to my guns. Because Ron continues to improve I know that the fall out from the nagging is worth it.
- Two weeks ago, Ron decided to go off of the Morphine that he was taking for pain. He felt that the pain level was such that it could be managed with Tylenol or Ibuprofen. So, we called the doctor's office and they directed us to talk to the pharmacist for information on weaning off of this wonderful drug. Our instructions were that because the dosage that Ron was getting on a daily basis was so low, he could go off of it "cold turkey". So, at noon on Monday, April 16, Ron ripped the last morphine patch off of his arm and then the "fun" began. By that evening and for the next 72 hours he had a headache, stomach ache, aching joints and he was nauseous, didn't want to eat, couldn't sleep or stop shaking, couldn't get warm and had a great deal of difficulty with his emotions so he cried off and on non-stop. It was horrible for him and for us to watch even though we knew it wouldn't last. Although it is true that morphine, which is an opiate and our own bodies produce it, is not addictive, it does affect our bodies in a certain way and when it is no longer there to affect us, there are withdrawal symptoms. Ron's body had to once again get used to not having the morphine every day. By Thursday Ron was feeling much better but still not himself because he hadn't slept. So, back to the phone to call the doctor to see what we should or could do about that. We figured we would just have to wait and see if sleep would eventually take over but that was not the case. They said that it was imperative that Ron get his rest and that we needed to trick his body back into the routine of sleeping not only at night but all through the night. So, off we went to the pharmacy to get a prescribed sleep aid that Ron must take for a couple of weeks. He has been having pretty good nights ever since and as a result his spirits have improved.
- On April 21, Corey came home from University for the summer and that was a great relief for all of us but especially for Ron. It makes him feel so much more relaxed to have both boys within arms reach. I mean that literally because he often asks them stop in their tracks to give him a hug....and they do! The hugs seem to feed Ron's soul and the boys understand his need for that.
- This week (one week after the agony of the withdrawal) things are MUCH better. Ron is more rested than he has been in a long time, his appetite is growing steadily and he is more active. He gets out for a walk every day to get fresh air and to start getting his strength and stamina back and he is spending more time outside doing small chores each day. I keep telling him that dusting and vacuuming are not that strenuous and there are many other household chores that I could have him do but he doesn't seem to be listening.
- As for the inside of Ron's mouth and throat, he says that it is almost all healed and it doesn't hurt to eat salty or vinegary things any more except for one small spot inside his cheek. He is enjoying salads and a bit more in the way of "spicy or acidic" foods again. He has been diligently working on his jaw exercises and can open his mouth wider each day. He can even eat hamburgers again as long as they are not too huge. The reduced amount of saliva production causes a few problems for him and although it is frustrating now because he is not used to it yet, I think that he will soon handle that just "as a matter of fact". Things like chocolate don't melt in his mouth like they used to and breads and dry food tend to gunk up a bit and get caught between his teeth and gums too much. As a result, he always has to have water with him when he eats to "clear his palate so to speak". The one other thing that he has to deal with on a daily basis is trying to stay warm. He often gets chilled, especially in the evening and that is probably because he has no fat to keep him warm and he gets tired out by then.
- For a while Ron was coping with what he called a very offensive problem and that was the odour that was coming from his mouth and throat. He hated thinking that he had bad breath when in reality, it was the flesh and tumour that was dead and/or stilly dying that was causing the odour. Knowing where it was coming from was a comfort in that he knew the radiation was working but he still was self-conscious of it. It is gone now too and he is really happy about that.
- Every once is a while, and understandably so, Ron gets into a funk and feels "down and out". When that happens, the best plan of action is to listen and then turn the focus on the positives in our lives (and there are a whole host of those including the love, caring and blessings we get from all of you). Now that he is feeling better, it is easier to swing him into a better frame of mind much faster. Almost every day he reiterates to us that he can't wait for next Wednesday (May 2) to come. On that day we head back to Princess Margaret for a multitude of appointments. First, we visit Dr. Lee the dentist so she can make sure his teeth continue to stay strong and healthy. She will also do a saliva test to see how much of his saliva production has been destroyed. After that Ron will have a cat scan that is the "biggy". It will give us the final outcome of the radiation treatments. In other words, it better darn well show that the cancer has been obliterated. Next, we will cross over to Toronto General Hospital so that the feeding tube can be removed. For Ron that will be a HUGE step in the right direction. He has hated that tube being there for quite some time and can't wait for it to be GONE!!!!!!! There were times I was afraid that he would get to hate it so much that he might just pull it out himself! Finally, we will visit with Dr. Cummings and he will answer some questions for us and take a look down Ron's throat to see how it has been healing. Ron's #1 question is...when can I get back to work? You know how they say, "be careful what you wish for"...well, I don't think I'll ever again hear Ron say "I wish I didn't have to go to work today". Needless to say, we are both very much looking forward to May 2 but there is still an underlying sense of dread and worry about the cat scan results. We don't allow the words "what if" because we know how truly powerful positive thinking is, but the fear does seem to claw its way into our heads sometimes. When that happens, we just claw right back. It will be a very long day for us but it will be good to have it all done at once and then get on with the journey.
So, that gets you pretty well caught up. After next Wednesday, we will let you know what we know as soon as we know it. Until then, pour out the positive vibes and prayers for good results from the scan and other check-ups coming up in 5 days and we will talk to you soon. Our gratitude for your continued support is immeasurable and we continue to heartfully thank you every day.
Sylvia, Ron, Corey and Brodie
Update # 22
October 17, 2007
Well it has been three months since our last update (that just reminded me of an AA meeting....well is has been 3 months since my last drink) and we are thrilled to announce that today's check-up was tremendous. Our first stop at Princess Margaret today was to see the dentist. He told us that Ron's teeth look great (healthy and strong) and that besides some scaring at the back of his throat, everything looked in good shape and well healed. The only problem Ron still has is that he cannot open his mouth as wide as he used to (not always a bad thing) so he is to continue stretching the jaw daily. They also did a saliva test to see if his saliva production has improved, and it has. Last time he scored a 14 (not sure what that means exactly) after 3 minutes into the test and today his score was 23 after 3 minutes. Before treatment, he scored 30 after 3 minutes so all in all he is extremely lucky. Ron did say that breads and dry foods are easier to eat lately and he is not waking up to drink water as often during the night. Ron is to continue with his daily fluoride treatments as well and the dentist does not need to see Ron for 6 months.
Our second appointment was with the radiologists (Dr. Lee and Dr. Cummings) and the news there was just as good. Ron has gained 10 pounds in the last 3 months and the Cat Scan that he had last week came back perfectly clear. No lumps, bumps or abnormalities showed up during the thorough examination and scope that Ron had today and everyone was extremely pleased with his progress. He does not have to have any Cat Scans or MRIs for one year (as long as all stays well) but Dr. Cummings still wants to see Ron in 3 months. It is funny that when we are there the doctors seem almost apologetic when they say they still want to see you in 2 or 3 or however many months (as if it is a huge burden to go there) but we are so glad that they are keeping such a close eye on Ron. We will continue to go as many times as they want us there and probably if they say one day that we don't need to come back we will be anxious and not too happy about being "discharged". I never thought that being at a hospital such as Princess Margaret would give us a sense of "safety" but it does....I know they can take care of us there.
Two weeks ago Ron started to play hockey again and he couldn't be happier about it. He felt really sore after the first game (unused muscles) but enjoyed being lighter on his skates. It seemed that being able to go out and play hockey again brought him full circle in his journey. He enjoys having his strength and stamina back and even when he is chopping or lugging wood he no longer complains about having to do it....he calls it exercise now and says it is helping him get back into shape....wonders never cease. Actually, we both seem to complain a lot less about the "inconsequential" things that we used to give importance to. Instead, we try to look for the positive side of things and give thanks for every little thing that comes our way (good or bad because we have learned that even the bad things have a purpose so long as we are willing to gain knowledge from them).
So, it was so good to chat with all of you again and to be able to share good news. Look for an update sometime in January and until then stay safe and well. Remember too that we do not forget that it was all of you that helped us to get to this point in our journey and for that we will always be grateful.
Love Sylvia, Ron, Corey and Brodie.
Update # 23
January 23, 2008
Well, it has been a year since Ron had his first radiation treatment and all is well. We were to Princess Margaret today for his 3 month check up and Dr. Cummings was very pleased. It was a great appointment for a number of reasons. First off, Dr. Cummings has a new student working with him (from Chicago) and as a result, he was extremely thorough (not that he isn't always) because he wanted to show the student everything that was going on inside Ron's throat and as he was doing so, he was giving him all sorts of details that we got to hear too. It was great to hear things like...the back of the tongue looks great as does the larynx and everything looks perfectly clear and healthy. Dr. Cummings also shared with us some new data and procedures that they are now trying in the hospital that will hopefully spare the saliva glands of current patients. That will not help us now but it will help future patients and we think that is great! They are realizing that maybe the strength of radiation that they have been using might be too much but my theory for Ron is that whatever they did with him made him cancer free and we couldn't ask for more than that. Ron is pretty lucky anyway in that he does still have some saliva (more than they originally anticipated). We didn't need to see the dentist today because Ron's teeth are doing so well and he is faithfully using his fluoride EVERY day. There was no indication of any problems whatsoever and as always we feel tremendously blessed. Ron has been steadily gaining weight and they are very pleased about that too (he is not so much any more but they are). Dr. Cummings kindly gave us the option of seeing a local doctor for every other checkup from now on (he wanted to spare us the drive to T.O.) but we very quickly and in somewhat of a panicked tone said...THANKS BUT NO THANKS!!! We feel so safe and welcome at PMH and told him that the trip to the city was NO problem whatsoever. He said that that was totally fine and was only trying to do us a favour. So, thankfully, we will head back to Toronto in April to see both the dentist and Dr. Cummings. They had no other advice for us except to "carry on with whatever we have been doing because whatever it is...it's working". It was interesting to us once again that the student doctor wanted to know if Ron was a smoker or drinker and then just looked somewhat bewildered when Ron said "I've never smoked and only drink casually". But, you all know our take on the whole thing....it happened for a reason and even though we will probably never truly know what the reason was, we have learned so much about what is really important in life and the rest is history! Our goal now is to enjoy every day to its fullest and to be thankful for all our blessings.
Thanks, as always, to all of you for your unwavering good wishes.
The Fox Family
-odds are in our favour that the radiation got everything but we won't know for sure until all the follow up scans are done...so keep the positive thoughts, crossed fingers and prayers going please
Tomorrow we hope to be home early in the evening if all goes well. Then it usually takes Ron another day to recuperate from the trip down and back....it exhausts him but at least he will know that the biggest hurdle is over. In the meantime, I will continue to keep you updated on his progress.
Take care and thank you everyone for all that you have done to help us make it through this horrendous part of the process....I can't even begin to tell you all how much your thoughtfullness has helped to make this portion of the journey we are on easier to cope with. We are truly blessed to have so many people on our side and we will be forever grateful.
Love Sylvia and Ron
Update # 21
April 27, 2007
RETURN TO TALES OF THE BATTLE