Prisoners of Hope

It's finally the weekend. Another week down, and it's been an interesting week. This evening we watched NCAA basketball in the dark for Earth hour. (Unfortunately the tv did not get turned off, and for the record West Virginia upset Kentucky.)

I'm going to share some info that is encouraging to us, but is a little difficult to write. There are a few reasons for this. If you're anything like me, you're skeptical by nature and might have a hard time believing this. Plus some of this post is more graphic in nature than I'd normally discuss, let alone write about. But we're sharing and we want people to pray effectively so here goes...

I'll have to back up a bit. After Dave had been on the raw food diet for a few weeks we noticed the he had no bad breath, or body odour, and this is silly, but didn't 'pass gas' anymore either. Now this might seem weird, but this is actually something that raw foodists comment on, that they have no bad breath or body odour because of what you're putting in your body - and what you're not putting in. (During initial detox however, you likely will have odours.)

Now fast forward a month and things seem to be changing. We have been trying to figure out why Dave is not starting to feel significantly better after stopping chemotherapy - he's eating the healthiest food around.(Organic raw vegetables and fruit, and juicing.) At his last visit at the cancer clinic a few weeks ago, they said his lungs etc... were clear and he seemed relatively healthy. But he doesn't seem to be getting better or stronger, and in fact things seem to be getting worse. He started vomiting, and the episodes seemed to be increasing in frequency. And when he coughs his breath has become awful. As some of you are aware, Dave hasn't been able to swallow his own saliva for about 3 weeks. (Actually, he CAN swallow, but he tries not to, because it doesn't get past the tumor. It collects, and then makes him sick, so he spits in a cup instead.) To avoid getting too gross, I'll skip some of the side effects. But the short version is that last week we were wondering if the new smell when he coughs and what he's been spitting up had something to do with the tumor changing. (We didn't know if this was changing for better or worse, and when we felt hopeful, we also thought we might be grasping at straws.) Last weekend we were both feeling pretty discouraged. Dave seemed to be doing really poorly. (Hot and cold flashes, bad headaches, nausea, vomiting - and the tumor smelling.) Dave's mom texted me to remind me not to pay attention to the wind and waves or I'd sink, which was very good advice. Monday was a little better and a friend called and asked if we'd go to the healing service at Northpark that night. Dave was feeling well, but still hesitant, especially after feeling so bad from a short trip to a nearby Chapters over the weekend. (I was afraid he was going to pass out and I might need to ask for help to get him back to the car.) Anyway, we decided at the last minute to go to Northpark. It was a good evening and we were there for a few hours and Dave did fine. One woman praying with us, started praying that every time that Dave coughed or spit, he would be spitting out the tumor. (This is what we've been praying for - pretty much every day. How could she really be familiar with this?) On Monday evening Dave woke up in the middle of the night in a cold sweat.

Some of you may be wondering why we wouldn't ask our oncologist about this - the bad side effects and the smell. If you recall - the chemo failed halfway through, and we declined radiation because the little benefit it might offer wasn't worth the very serious side effects of radiating around vital organs. (Again, they remind us that they can't cure this - the purpose of chemo & radiation was just try to shrink the tumor and gain a few months. Also the 2nd opinion radiation oncologist we met with at Princess Margaret Hospital told us that if Dave were his  brother, he wouldn't do radiation. He said to stay as healthy as he can for as long as he can.) The week after our appointment with the radiation oncologist, I called the cancer clinic to ask which doctor we should contact with any concerns. The next day they called back to tell us to contact our family doctor if we need medical attention. It doesn't really make a lot of sense to me, as I would think that an oncologist would be better able to deal and treat the symptoms of cancer than a GP. But the reality is that if you're not seeing the Medical Oncologist for chemotherapy, or the Radiation Oncologist for radiation treatment - they have nothing else to offer. Not surprisingly it doesn't really bother us - as they're just a constant reminder that Dave's cancer is incurable. They're depressing and a big part of surviving something like this is optimism. Yesterday, we went to see our GP just to check-in. It's a little less stressful than the cancer clinic. We asked him some questions, about what Dave was going through, but he didn't really know. He said he would just just treat symptoms as they came up.

Back to the positive stuff, on Tuesday I came across some information regarding 'lysing', or 'tumor lysis'. "DETOXIFICATION

This process of the cancer cells breaking down is called "lysing," which is a detoxification process. Some people have fully recovered from their cancer with no outward signs of detoxing at all. People with a lot of cancer or fast-growing cancer will often see mucous like material in their feces and/or urine, or experience a runny nose or crusty eyes in the morning. Sometimes, people will even cough or vomit up mucous like whitish stuff. If any of this happens, it can generally be taken as a good sign that dead cancer cell parts are being ejected out of the body." Dave has been experiencing all of these symptoms for almost 2 weeks now.

I did some more digging and came across a page that described in-depth the side effects of lysing that almost ENTIRELY describe what Dave's been experiencing recently. We had been so discouraged lately, that we'd been praying and begging for something positive to encourage us. After reading this new info, we're were cautiously optimistic that the main tumor might be breaking up. Then late Tuesday evening I came across more encouraging information. I had purchased a book online that arrived Tuesday. ('The Gerson Therapy' - it's an alternative cancer therapy that is very similar to what Dave's doing, but they allow different foods etc...) We went to bed, I prayed for Dave, and then opened the book. And I kid you not, but the VERY FIRST PAGE I opened to was about a 46 year old man giving his survival story. He had cancer of the esophagus and larynx and was given a poor prognosis. He read one of the Gerson books twice, and then decided to do it as he had nothing to lose. He said that after 1 1/2 months, he could tell the tumor was dying as the smell was vile. He said that it was an awful time for him as well. Then he went on to say that after few months had passed, he was walking into a hardware store, and felt the tumor flutter and vibrate and then fall away. He swallowed it without thinking, but then collapsed in a panic. He doesn't remember how but he drove the 20 minutes home, and realized what had happened. In hindsight he said that he should have tried to vomit it up but wasn't thinking clearly. He said that he was violently ill for a week as his body absorbed and then got rid of the toxins from the tumor.

You may not understand how encouraging this is to us, but up until then, I have been unable to find any personal stories of people overcoming Esophageal Cancer. I apologize for how gross this post is, but in order to share what's going on, there was no avoiding it. (And actually, I could go more in depth with other side effects which really seems to make us think this is the tumor starting to break down, but it's a little too gross.) It might be the fact that we're feeling more positive, but Dave seems to be feeling a little better this week. We realize that this is just the beginning, and Dave has a huge uphill battle ahead of him, but we are not giving up. We will prove the doctors wrong.

I have stolen the name of this post from another woman's site. She overcame a very bad terminal cancer in 1990 using an alternative therapy as well. It is very encouraging and "Prisoners of Hope" does aptly describe how we feel.

Although we're by no means out of the woods, this has really encouraged us. The true test will be when Dave is able to swallow liquids again. So for those of you that are of the faith, please continue to pray that the main tumor will just break down, and that the cancer that spread to his lymph nodes and liver would just disappear. Cancer disappearing and healthy cells regrowing has happened before, and we're praying that it will happen again.

God bless!

Val

First Day of Spring

After a week of almost summer-like weather, spring has finally arrived here in Southwestern Ontario! Unfortunately it's feeling a little wintery around here again today.

Dave has been enjoying March Madness for a week or so. For those of you that are unfamiliar with this, it's the NCAA basketball championship tournaments. For those of you that still don't quite get it, it's a phenomenon that sends hardcore American college basketball fans into a frenzy every year. Around here, it's like the Olympics - don't even think about changing the channel. Dave's not a big NBA fan. (I believe he refers to them as hoodlums.) However college basketball is an entirely different entity. These are players, coaches, and fans that live, breathe, eat, and die for the love of basketball. There's a lot of excitement, and many edge of your seat, nail-biting games. Good clean fun!

Also, I keep forgetting to mention that Dave did receive the TVDSB Award of Distinction. Fifty five people were nominated, and 21 were chosen this year. There is a ceremony and reception in May. In an earlier post about this, I mentioned that Dave has mixed feelings about this. Although he's honored to have been chosen, he feels that there are many others in his school that are equally, or more deserving. There were 10 letters of reference and there could easily have been more, but 10 is the maximum allowed with the nomination. These are heart tugging letters and are all true reminders of Dave's heart, and his desire to help the underdog in many cases. I've assured him that he deserves it.

Dave's week has been pretty full I think. He does have a lot of friends that want to come by to visit. Although the beginning and middle of the week weren't too bad for him, the last few days and today weren't very good. He just isn't feeling great, has occasional nausea (he thinks from the tumor's location), and is unfortunately still dealing with the fact that he can't swallow even liquids. He has been sick a few times and it's brutally painful for him. This evening we went briefly to Chapters as Dave wanted to get out and pickup a few magazines. It was tough. He is just not feeling strong, and seems to have spells where he just needs to stop and sit down. We were only there for about 15 minutes, and that was long enough. We got home and I must say that he did perk up pretty quickly when he turned the basketball games back on!

He's been reading the paper this evening and he found this article quite amusing but a sad commentary on what we feed our children. (Although it was in today's London Free Press, it doesn't seem to be in the online version of our paper. But here is a different link to the story.) It was titled "Not so happy meal turns 1 year". A nutritionist bought a happy meal and left it in her office for a year. It didn't rot or decompose at all.

And this is 'food' that is geared to children. That's pretty sad.

Thanks again for checking in and for praying for Dave, Cale, & I. 

Val

It was light out 'til 7:30 tonight!

Hi all. Just another post to check in with you. I was planning on posting last night, but I somehow lost an hour over the weekend and just ran out of time.

The end of last week were pretty bad days. Dave generally felt pretty crappy, had headaches, and wasn't able to keep a few of his meals down, which is really painful for him. The weekend was pretty good though. On Saturday night we went to our friend Mark's birthday party for a few hours. It's good to get out and Dave felt OK.

At the end of last week I was also able to speak directly with another surgeon out of St. Michael's Hospital in Toronto regarding options to ease Dave's swallowing problem. (Dave's thoracic surgeon here in London gave me his name and said he was the only doctor he knew of doing PDT for Esophageal Cancer.) I faxed him some of Dave's reports and he actually called me back the same day. He said that laser therapy and PDT (Photodynamic Therapy) weren't recommended for the stage and size of Dave's cancer, and he said that he would also recommend a stent for Dave's situation. This is what his surgeon here in London said was his only option. I think I've mentioned this before, but a stent is a self-expanding flexible mesh tube that they insert in his esophagus to keep the tumor growth back. It's an outpatient procedure and Dave would be able to eat again in 24 hours. Although his doctor assured me that there are little complications, I have read that there is risk of the stent slipping down and can become uncomfortable. (I also recall the second opinion doctor we spoke with in January mentioning this problem exactly as well.) Also, it's only 1/2" in diameter and his doctor mentioned that the most common problem is people becoming overzealous and trying to eat steak dinners etc... and food can become stuck.

At this point, Dave would prefer to hold off on the stent and just deal with the inability to swallow for now. There are two reasons for this. The stent apparently can't be removed after it's been in for a few weeks, which means it becomes permanent. Although the doctors don't understand this, we are still optimistic for healing through the grace of God, and so don't want the stent. Secondly, Dave really doesn't want to have to deal with something else that could have complications and cause other difficulties for him. He's concerned that it may become uncomfortable and will just become a new issue to contend with. 

Right now poor Dave is regularly tormented by food commercials on television. It's funny how you never notice this kind of thing, but there are A LOT of food and restaurant commercials. Food is such a social thing. People just get together and eat. That's what we do. Dave usually watches them, longingly, and is doing pretty well, but it does take it's toll over time and occasionally it's very trying for him. I guess it's just another challenge to overcome.

Yesterday some of his family came down to visit him. His 5 year old nephew was curious about the feeding tube. It was lunch time and Dave had to eat, so he showed John how it worked. Then he let him push the food in with the syringe. (We returned the feeding pump because of it's irritation factor - It's noisy.) Dave would rather just use big syringes and do it himself. Also it's easier to use syringes with the raw food diet than the pump. Anyway, John was pushing the syringe and his mom said, "He is never going to stop talking about this - I can tell right now!" Kids are so cute! They don't even think things like a feeding tube are strange. If it's normal to you - it's normal to them.

Today Dave was feeling pretty good for most of the day. His mom came down to visit and help him to sort through some school paperwork he brought home a few months ago. He was doing OK until a few hours ago and unfortunately was unable to keep his meal down. It's extremely painful for him, but he did feel better shortly afterwards. He actually said his back was feeling better afterwards than it had in a long time. Go figure. I'm really hoping with spring on the way, that Dave starts feeling up to getting outside and going for short walks every day and gets out in the fresh air again. I know that spring is good for the soul. (It is for me anyway!)

Everyday we hope and pray for a better day than the last. Thanks for your continued concern and prayers!

Val

Not feeling great today

Hi All!

Well Dave was able to make it to the Leafs game in Toronto yesterday with his uncle. (They left at around 3:30 and so he had to bring his food with him. Unfortunately Dave's unable to even swallow liquids at this point, and is using the feeding tube 100%.) Dave felt well yesterday and they had a good time! It was a good game, and the Leafs beat Boston in overtime.

This past Sunday our friend Mark organized a prayer day for Dave. It was a good feeling to know that at any point during the day, somebody was praying for us! And I do have to say that Dave felt pretty good all day on Sunday.

We had a bit of  'drag' news today. We were looking into photodynamic therapy at an alternative health center in Burlington, but unfortunately they don't have the facilities for an endoscope - which is required to use PDT for esophageal cancer. (They can only surface treat.) I have another doctor I'm trying to reach at St Michael's Hospital in Toronto. (We're looking into PDT to clear the tumor a bit so Dave can swallow again.)

Today wasn't a good day for Dave. He wasn't able to keep his meal down this morning, and just felt uncomfortable and in occasional pain for most of the day. We're not sure if it was just too long a day for him yesterday, but we're hoping that tomorrow's a better day! He was able to 'eat' and keep it down earlier this evening, and he seems to be feeling a little better now.

Thanks to everybody that's been praying for us! It's hard some days, but we're staying positive!

Val

Update

Hi All.

It's been a few days, so I thought I'd give a quick update.

Dave feels OK, but still tires very quickly if he tries to do anything - even just around the house. (Might just be an excuse to get out of housework...) On Thursday evening he went to the Knight's game with a friend. This evening he went out to an OHL game with a friend. (He really does have to plan for these by not doing anything throughout the day or he's entirely wiped. And sometimes he finds that he just can't do something, despite his plans.) This Tuesday evening he plans on going to Toronto to watch the Leafs play Boston. (A friend he reconnected with last year has been wanting to see an NHL game together.) Although I worry and think he should just take it easy and rest, it's also important to have things to look forward to, and to get out of the house. Dave's uncle is driving him down and going to the game as well.

On Friday afternoon I finally heard back from Dave's Thoracic surgeon regarding Dave's inability to swallow even liquids anymore. He strongly recommends putting a stent in - that's what they do, and that's all they offer here. I asked about laser therapy, and he said they used to do laser therapy years ago, but no longer do. It's extremely labour intensive for them, there's risk of perforation - which is a bad thing, and  he says the tumor grows back within weeks. I also asked about photodynamic therapy, and he said that it's normally only done on earlier stage esophageal tumors, and they don't do it here it London anyway. He only knew of one person that does them. He gave me the name - a doctor at St Michaels Hospital in Toronto. I will contact try to contact this doctor next week. Another friend gave us a lead on another place that does photodynamic therapy in Burlington, but after looking at their website, I have a feeling that they only use it on skin cancer. I call them yesterday as well, but the contact name I was given, as well as the Doctor were off on Friday. Hopefully they call back Monday.

Dave has to use the feeding tube 100% now. Fortunately we can still do the raw diet (juices and green smoothies etc...) through the tube. And Dave prefers not to have to drink the wheatgrass anyway! He does however salivate at all the food commercials on tv. I feel so bad for him... I try not to eat in front of him.

Tomorrow our friends Mark & Chris arranged a 12 hour prayer day for Dave, through the facebook page they set up. It awesome that you all are so supportive! More than anything we believe in the power of prayer and in Jesus Christ.

We still remain positive and are taking one day at a time!

Val

Hello March

Well  March is here, the Olympics are over, and the good guys won the gold medal game yesterday!
And Dave is now resigned to watching Oprah, Ellen, and Dr Oz! Just kidding. He insists that he watches nothing but sports highlights and olympic replays.

This morning we went to the LRCP for a consult with the Radiation Oncologist. Man that was frustrating. He said the only option (as a next step) is radiation, which would happen 5 days a week for 6 to 7 weeks and has a slew of it’s own side effects and risks with no guarantee that it will improve anything either. And the side effects would last another 4-6 weeks. (So 3 months of misery.) The side effects range from added pain and discomfort of the esophagus for sure, to potential for low blood counts and infections, absesses which he mentioned might feel like you're having a heart attack and should go to emerg. After chemo failed, we're obviously a little shy of radiation and I gotta say that he had no strong selling points. Also, he made it very clear that Dave can't have any anti-oxidants while doing radiation for 7 weeks as it negates the effects of radiation. It bothers us that in addition to damaging the immune system during treatment, you can't work on boosting it during this time.

I tried to discuss 2 other options (laser therapy & photodynamic therapy) to temporarily relieve the blockage and make Dave more comfortable, but he said they weren’t options because of the size of the tumor. We asked for a referral back to the thoracic surgeon Dave saw originally as I would prefer to get his opinion directly, and he said he would call them, but gave us the impression that they might not even be willing to spend the time to consult because basically radiation is just the next step and that’s the way it is. Take it or leave it.
I feel like kicking him in the shins...

He said he would go ahead and make plans for radiation while we think it over because it takes weeks to get things started anyway. (We obviously have the option to not go through with it.) The other thing that is frustrating is that he mentioned that they would prefer to have a PET scan done before radiation as it shows the cancer cells (including dormant cells) more clearly, but often OHIP won’t pay to have this done for poor prognosis cases. All he can do is put in a request and see what happens. Which, if I understand correctly, means that their radiation treatment won't be as good as it could/should be. It certainly wasn't a very good sell job.

So now we wait for phone calls. I actually called the surgeons office last Monday to try to get an appointment happening on my own, but to no avail. I will start pestering again tomorrow. Squeaky wheel...

We were discouraged earlier in the day but realized that we shouldn't be. The more frustrated we become with traditional treatment, the more alternative treatment makes sense here. Don't get me wrong, there's certainly a place for traditional medicine and after 2 recent sports injuries requiring surgeries in the last two years, I would actually be crippled right now without traditional medicine. There are areas where it excels and there are other areas (like oncology) where it feels like they're stabbing in the dark and hoping for the best. Fortunately we can rest our faith in Jesus Christ and know that he has a perfect plan. 

Yesterday Dave & I went to church, a friend from Toronto came by to visit afterwards, and then Dave went out to watch the Olympic Gold medal hockey game at a friends with a few guys from his baseball team . It was a great game, but Dave says that he still doesn't like Sydney Crosby! Hahaha! Dave also wants to thank Taylor for coming by to shovel our driveway on Saturday after all that snow we had. (Cale shovelled as well, but his leg is still sore from the car accident last Monday evening, and actually looks horrible now that gravity has hit the bruise.)

Thank you everyone for your emails, phone calls, prayer and support.

Have a great weekend!

Val