Another tough day with a twist

Hi all.

Dave is still in the hospital. Although they're happy that they think the blockage has cleared, they would still like his pain situation to be better under control. (He had 2 episodes today where he was in excruciating back pain while laying out flat and needed the almost instant pain relief from you get through a needle. If he were at home and that happened, we would be unable to get his pain under control fast enough with pills.)

Also, Dave does seem to be a little worse and less mobile each day I come in. At this point I think I'll need to bring in a hospital bed etc.. to bring him home safely. (Laying on a flat bed or couch will only make his back feel worse.) There will be more discussion tomorrow but it's difficult to get anything done over the weekend because of staff changes.

This afternoon we met with his radiation oncologist again regarding some spot radiation on his spine to alleviate some of his main causes of back pain. (This is different than the radiation we rejected for his esophagus, which was 6 weeks of radiation, another minimum 6 weeks of recovery, guaranteed pain and discomfort from side effects for the full 3 months, no guarantee of any substantial tumor shrinkage, and real risk of serious complications because they would be radiating around vital organs.) This would be a much shorter dose for pain management, few side effects, and little risk. If his pain meds can be reduced because of it, he will be much more like himself as well. 

So, he had an additional catscan this afternoon for radiation purposes as well as 3 radiation tattoo's. (They tattoo their pinpoint targets on him for accuracy purposes.) The radiation will start Monday. If he's at home by then, I'll be bringing him back and forth for short sessions for about 5 days.

On a different note, I have to share something that is a little confusing and can't be explained.

A few weeks ago Dave strongly felt that something was changing with the main tumor in his esophagus. He tried to drink a little water, but it didn't go down past the tumor, and it came back up. On Tuesday morning in his room in Emerg, he tried again, but the same thing happened. On Wednesday he kept telling me that he was close and that he would be drinking on Friday. He was insistent actually and I thought it was just the pain meds talking. On Wednesday he asked everybody to pray that he could drink some water. On Thursday he told me that he would drink tomorrow (Friday). Again, I'm thinking to myself - "pain meds talking...". 

Dave's mom is down for a few days, and this morning (Friday) we both walked into the room and he wanted to show us something. He picked up his glass of water, and took a few big gulps and he drank it! (It was followed by a somewhat amusing little burp, but he drank it and it stayed down no problem.) I was, and still am, in a bit of shock. He insisted for 2 days that he was going to drink on Friday and he did. I'm confused that this good news is happening in conjunction with such dire news that we just received. I don't get it.

That being said... I don't understand how God works. I'm just glad He's working! I'm going to go out on a limb and share some more stuff. (This is me stepping out of the boat.) Despite being so hopped on on serious pain meds and irrational most of the time this week, when Dave talks about God and Jesus Christ this week, he's calm, and the things he's saying are clear. I don't remember what day it was, or if it was before or after we got our bad news on Wednesday, but he said that is between him alone and God now and that traditional (chemo) and alternative therapies had failed so that when he was healed, it could only be attributed to God. I feel a need to share this.

I won't kid you. Dave isn't well this week. He has a lot of fluids accumulating throughout his body and it's worse each day. He's lost a lot of weight, even more so this week after no food for 4 days (doctors orders) and does not look good. His body is fighting hard but right now the cancer seems to be winning. I have been going through a lot of turmoil this week (every week actually), but am pretty calm right now. This blog has become more for me than you guys anymore.

I don't really know what else to say. That's a lot of personal info out there online - I know. But that didn't seem to bother Dave from the start of this blog. All I can say, is keep praying. Praise God, that he can drink as that has boosted Dave's spirits tremendously!

Good night.

Val

Hospital Day 4

Just a quick update as it's late and I'm finding myself falling asleep at this computer.

Dave is still in the hospital but it's looking like they might discharge him tomorrow (Friday). (He really wants to get home.) He's comfortable, but still really loopy from the pain meds. (He hates it when I say that, but he is.) They started him on a pain patch this evening, but I guess it takes a few days to fully kick in, and so he gets other pain meds as needed for now. 

Thanks everybody for your prayers and encouragement. Although we have our moments, we are still hanging in there and are praying strong along with you guys.

Thanks,

Val

Cancer

Hi All.

I just wanted to give an update, even though it's not an update I like. Dave had a lower abdominal catscan yesterday and the doctor gave us the results today. Dave's cancer is still spreading. Since the last scan in February, the spot on his liver has gone from 3 cm to 11 cm. There is further spread in the lymph nodes, and other spots within his abdomen, including near the pancreas. There is also a spot on his lower spine which is likely the cause of his back pain. (Which is why he started on the T3's a few weeks ago, which bunged him up so much that he's in the hospital now.) They didn't do a scan of his chest, so we don't know what exactly is going on up there, although I guess they made note of his esophagus and that part of the middle of that tumor is necrotic - meaning that there is some die-off in it. The doctor said that this can happen with recent chemo that might kill it off (which Dave hasn't had for 4 months) or just naturally with older tumors. There are no measurements etc regarding the main tumor growth - just a comment by the catscan 'operator' I guess.

This is obviously crushing to us right now, as we felt so positive.

Dave will still be coming home soon (in the next day or two), as soon as they're happy that the blockage in his bowels has cleared. (It's coming slowly.) I believe they're planning on doing another Xray in the morning.

The pain med that Dave is on, is making him pretty loopy, drowsy, as well as severely drying out his mouth. He is very parched, which just exacerbates the problem that he can't drink because of the main tumor. He is asking for everybody to pray that he can somehow be able to drink again. He just wants to drink a refreshing glass of water, which is just breaking my heart.

There is also a small problem with the pain med they initially intended to put him on. Because it's time release - it won't work by going through a feeding tube. (It needs to be whole - not crushed and mixed in water.) That might delay him coming home as well. We had briefly discussed different pain meds last week with his family doctor. He actually suggested the same med that they've put him on this week. I asked about a patch, and he said that they're heavier duty, and people usually work their way up to that. I'll ask the doctor tomorrow about it, but regardless I'm sure they'll come up with something.

This evening we went for a walk down to the front of the hospital to sit outside. Dave was too tired to walk back, so I grabbed a wheelchair and wheeled him back. We stopped briefly in the waiting room to see what was going on in the game tonight. Dave was tired and was overdue for meds so we went back to his room. He'll be sad in the morning to hear that the Hawks beat Philly.

Also, I apologize to those of you that have emailed me or left messages on our machine recently and I haven't replied. I'm only checking messages on the machine, and emails on the computer very briefly in the late evening (early morning) right now. However, I do read them and they're really positive, and uplifting, and I thank you for them. I obviously won't be giving the # out online, but for those of you that have my cell #, there is cell service in Dave's room, and you can call me or text me if you like. I'm more likely to reply as I'm sitting around in there.

And I just want to thank everybody that's been doing so much yardwork and clean up around our house. I haven't had a chance to thank everybody properly, but I just want to let you know that it's very appreciated and just feels better to look around and not feel overwhelmed by everything that should be done. It's looking great! Some of you have still offered to do some work and asked what's left. I haven't forgotten and will let you know.

Please pray for us. To keep our minds focused on Jesus Christ and not dwell in self pity. We know that He can still turn this around if that is His will.

Val

Hospital Day 2

Good evening (or morning).

Today was a long, but fairly uneventful day in the hospital. Dave spent most of the day in the ER, until a room opened up at around 5pm. It was a beautiful day, and so in the afternoon we walked out of emerg to sit outside in the sun. Dave is feeling much better. It's obvious that the T3's weren't working well at all, and they gave him a different pain med which gave him so much better relief. He was feeling much better today than he has for many weeks. He said he got a great night's sleep last night, even though he was sleeping on a stretcher in emerg.

So, basically they have him on a saline IV for fluids and don't want him to have any food or liquids for now. They're giving him heavy duty stool softeners and once he's 'cleared' the blockage, they should send him home. He's a little loopy on this new pain med and so very entertaining. He told the first friend that showed up this morning to visit, that 'Basically, I'm full of shit.' Hahaha! (Sorry. That may not be blog appropriate, but it was pretty funny.)

 

Dave had a steady stream of visitors throughout the day, and they were all great visits and always uplifting

A friend has taken Brady for a day, so things were pretty quiet when I got home this evening.

That's the short version, and hopefully Dave is back home tomorrow (Wednesday) or Thursday morning.

Good night and thanks to all you friends and family that have been praying for us!

Val

Emerg again

Hi all.

I know some of you know that I was taking Dave to emerg this afternoon, so I feel obliged to give a quick update.

Dave has had a lot of abdominal fluid. I noticed it starting last weekend and pointed it out to the doctor during his transfusion a week ago. This weekend it was looking much worse. (He gained 10 lbs in a week, and it certainly wasn't from eating more - it was all fluid in his abdomen.) I called at the cancer clinic first this morning and the oncologist called me in the afternoon and said that they wouldn't be able to see him until Wednesday at the earliest - maybe later. I told her I was taking him to emerg and wasn't willing to wait that long. He was uncomfortable, and I don't know if it was OK to wait or not.

So they did an ultrasound and xray and said that he had fluid buildup but not enough that they would drain it. However his bowels were becoming impacted - and they agreed that it was likely from the T3's. (He started taking them about 3 weeks ago - mainly for back pain. In the last 4 or 5 days he was taking a lot more.) They said there are a number of meds he would need to take to clear it. He could do it at home if he preferred but he would have to keep in daily contact, and the doctor said he would prefer it if he was admitted for a few days. The risk of bowel perforation, if it didn't resolve, is a serious and deadly complication. Dave decided he wanted to stay in and make sure things were cleared.

So, Dave will be in the hospital for about 48 hours. It's possible that if they don't locate a room for him, that he will stay in Emerg the whole time. At least he was in a private room.

Friends came in to visit this evening. (I didn't know they let visitors into Emerg.) We felt calm despite being in there. The doctors and nurses were all great in the ER.

That's where we're at today. I've gone home to sleep and will be back there tomorrow morning.

Val

Hi everyone.

Just wanted to check in.

I'd like to thank everybody that's been coming around to do yard work for us. It's really touching. It's overwhelming actually the way so many people have jumped in to help out. Thanks so much.

This weekend is the Stephanie & Ashley Daub's Memorial 3on3 Basketball Tournament. Dave has always been a supporter of this event. The proceeds from this event go to the London Abused Women's Centre. This morning London West MPP Chris Bentley presented Dave with the 2010 Frances Marion Beyon Award for Strength and Courage at the opening ceremonies for the tournament. Dave was really tired, but he really wanted to be there. He couldn't stay long, but I'm really happy we could make it.

Right now, Dave's not feeling well at all. I'm sure the blood transfusion has helped somewhat, but he still has a lot going on. He hasn't slept much at all overnight for the past few days. He seems to have back pain all the time now, but it's worse in the evenings.

We're trying hard to stay positive, and are hanging in right now!

Thanks everybody for your prayers and words of encouragement. You don't know how much they're appreciated.

Val

Thank you!

Yesterday Dave still wasn't feeling well. (Exhaustion, back pain, & abdominal pain.) He was feeling well in the morning, but when he 'ate' late morning he said the wheels fell off and the rest of the day got no better. He had a rough evening and wasn't able to sleep all night. He also had a pretty rough morning and was pretty upset.

Today he had a massage mid-afternoon, and by this evening was feeling pretty good. Some friends dropped by this evening, and he was fine. On another positive note, his feeding tube pain that started bothering him a few weeks ago seems to be OK today. (It was really painful when he changes the dressing and moved the tube around.)

So, we're obviously hoping that this blood transfusion has kicked in and he keeps feeling well!

Two different groups of people came yesterday & today to do yardwork for us. Things are shaping up and looking good. Thanks everybody that has come by and expressed a desire to help out. It removes a big burden from our shoulders! There is still plenty to do and I apologize for not getting back to a few of you that have offered as well. I will re-assess and let you know.

I also want to thank everybody that has been praying for us. It helped today!

Tomorrow morning we have an appointment with our GP. I'm hoping to discuss some of Dave's digestive problems and other concerns. (We haven't been to see him since March.) I'm hoping he can shed some light on Dave's digestive problem. Although the oncologist prescribed a motility drug last week, it worked for only a few days and made no difference yesterday. Here's hoping we're pleasantly surprised tomorrow and he can see past the cancer and look at the patient.

Take care!

Val

Give Blood

Hi everyone.

The blood transfusion went fine and was uneventful for the most part. Dave was so weak this morning I had to wheel him in and out of the cancer clinic. We asked the nurse how long it takes to kick in, and she said that it's usually a day or two but that he might start feeling a little better even by the evening. (She said that some people insist that they feel better right away, but she thought it might just be in their heads.)

I'm going to share this next part that is a little depressing and still makes me mad. I asked to speak with the oncologist, because she didn't call me back on Wednesday to discuss the blood tests like she said she would, and I had questions. She made the time to come and see us and answered my questions as best she could. (Like many medical conditions, doctors aren't always sure why things are caused and make their best guess.) She felt the anemia is likely caused by a number of factors and referred to it as 'Anemia of Chronic Disease'. She also said that if the low hemoglobin count was the cause of Dave's fatigue and weakness, that he should feel better in one or two days. And if he didn't, then the cause is something else - namely the cancer specifically. I asked if it could be caused by the chemo drugs he was on, and she said not at this point - that they're out of your system in 4 weeks. Quite frankly, I don't buy it and strongly feel that chemo is at least partly responsible for the anemia. (All 3 chemo meds he was on (cisplatin, epirubicin, & 5FU) are known to cause anemia, with the cisplatin (a platinum based agent) being the worst. I don't believe the body can recover in 4 weeks.)

Here's where it gets depressing. Again. On our visit last Wednesday, she pushed the need for Dave to get his affairs in order - which has already been drilled into us by the other 3 doctors we've already seen at the cancer clinic during our early visits back in December. Then she briefly explained how to access a palliative bed in one of the hospitals and then said we'd need to decide if he wanted a DNR (do not resuscitate) order or not when admitted. We sat there a little stunned again, thanked her for her time, and tried not to cry when she walked away. At this point I'm feeling the need to say that we'd just like some medical attention without the constant reminder that they think he's going to die. We get it already! THEY can't cure his cancer. We still believe that Hope is a pretty powerful medicine and apparently they're not willing to prescribe that med. Thankfully our Hope isn't in men, but in God.

We got home just after 3pm and the afternoon's steady onslaught of thunderstorms seemed to mirror our mood. Thank God for silver linings! Storms always pass and we seem to get over these depressing hospital visits a little more quickly each time.

This evening Dave said he wasn't feeling like Superman yet and was wondering who's blood he had received. I think he is feeling a little better and we'll see what Tuesday and Wednesday hold.

Keep prayin'!

Val

Back to the Cancer Clinic on Monday

Hi all.

I wanted to let you guys know about this yesterday, and just ran out of time. This post is a little brief but just wanted to fill you in.

Wednesday's visit with the new oncologist was OK. She was much more approachable than the previous doctors we've encountered and spent a lot of time with us. I asked her to do a blood test because Dave has all the symptoms of Vitamin B12 deficiency. (This is possible with vegans as this is the only nutrient that you can't get from a plant based diet. It usually takes a while to manifest but I thought it was worth checking.) She agreed to do it and said she'd check some other stuff as well.

Thursday morning they called me and said that the blood test came back and Dave's red blood cell count is low (anemia) and he needs a blood transfusion to receive 2 units of blood. The soonest they could do it is Monday at 9 and it takes about 6 hours. Dave has been extremely fatigued, and yesterday and today were worse. (He is absolutely exhausted, and just wants to sleep. Going out for even a 5 minute walk right now is out of the question.) If I had realized how quickly he would feel so bad, I would have tried to push for it to be done today. Although Dave isn't keen on receiving blood, (hates needles and blood) he should feel much better after the transfusion. It should make a big difference in his overall wellness.

Anemia is apparently pretty common in cancer patients, and can be caused by a number of things or a combination of things. It can be from the cancer, chemotherapy also causes anemia, and it can be caused by a B12 deficiency. I asked about the test result for that and the nurse said it hadn't come back yet. Apparently they only do those test once a week, and so it will be a while. As I research a little more I'm wondering why they wouldn't automatically check for anemia in cancer patients, especially after we told the other oncologist three weeks ago, and the surgeon last week, about how poorly Dave was feeling. All the symptoms we described to both of them are anemia symptoms, and it's common in cancer patients. ??? And even more common in patients that have received the chemotherapy drugs that Dave did. ???

Anyway, that's what's going on right now. For those of you that are of the praying kind, please pray that Dave doesn't feel too badly this weekend as we wait for treatment. And of course, keep praying that the cancer is being destroyed..

Touch base later.

Val

The Work List

This is the list I mentioned earlier in the week. (A few people have offered to help out and even organize a 'work day'. I think a work day might be a little too chaotic, so I've come up with a list instead.)

This is all outdoor yard work.
If you want to help with something, please give me a call in the evenings or weekends so I can organize it. Also, please don’t feel obliged. Most of this stuff is manual labour and will require a strong back!


1) A very small amount of weeding is required on the gardens in the front, and then some mulch needs to be spread. I need to order about 3 yards of mulch and have it dumped it in our driveway turnaround for this. The remaining mulch will need to be wheelbarrowed to the backyard for future use.


2) The garden in our backyard is a bit of a mess. (I'm the gardener around here, but last spring I had ankle surgery, and the previous spring I had knee surgery after 2 sports injuries. Because of this, the garden in the back has been very neglected for over 2 years now.) The grass is growing into the garden, and it needs to be edged, and cleaned up. There is A LOT of weeding to be done back there, and then it needs to be mulched. (If you want to help with this, don’t feel obliged to do the whole garden, or spend a whole day or anything! It is a big job and can obviously just be spread out and done over a period of time, by different people.) I have limited gardening tools so if you have tools, it might be best to bring your own. 

3) The Boston Ivy on the side of our house growing up the chimney is outta control. Dave usually drastically cuts it back every three years or so – this would be the year and it’s pretty overdue. This is a 2 person job, as the ivy grows up 2 full stories, so somebody needs to spot the person the ladder and hold it steady. (We have a big ladder to use.) The clippings from this task will either need to be hauled away, or bundled & tied up and we’ll store them somewhere until the next yard waste pickup.

4) We have fabric awnings that need to be put up on 5 windows for the summer. This is a 2 person job as well. Three windows are on the 2nd story which will require a spotter for person on the ladder. Also, the ivy mentioned above needs to be removed before 2 of these awnings can be put up.

5) We’d like to open the pool in the next few weeks. (I might already have somebody to do this, but thought I'd mention it here, just in case.) We will have to drain the water from the pool cover first. (We have an old pump we use for this, and it’s a slow process of just letting the water drain for hours, so we’ll find the time to take care of this on our own.) Once this is done then the ‘helpers’ could come over another day to remove the remaining ‘crud’ from the top of the cover. The crud (leaves and bugs etc) get scooped with a net into a wheelbarrow, and added to the compost. Then 2 or 3 people need to carefully pull the cover off, folding it accordion style as you go, and then lift it over the pool fence. The cover then needs to be hauled to the driveway to be laid out, hosed down, scrubbed clean, left to air dry, and then folded up and stored for the summer. (It’s put in a rubbermaid container and taken back down to the pool shed.) After the cover is off the pool, it’s not a big deal for us to top it up with water, add the necessary chemicals, and start it up.
 
6) Pool shed. Last fall Dave started ‘renovating’ our old pool shed. He put a new roof on and re-sided it. The siding still needs to be stained and will require 2 coats of a dark stain (which I still need to pick out and purchase). Also the doors need to be re-hung first, but I believe Dave has arranged for a past student to do that for us.

7) We have 2 smallish trees (one out front at the street, and one in the backyard) that died this winter and need to be removed. I also have a small mulberry tree in a bad spot that I've tried to kill numerous times, but it just won't die. It needs to be hacked back again. Again, they need to be hauled away, or cut into smaller pieces & bundled so they're ready for the next yard waste pickup.

8) We have a small boxwood hedge out front that needs to be trimmed, as well as a larger privet hedge in the front.


Dave does have a few other things, like moving firewood & cleaning up our wood pile, but that's not pressing and can wait. I think this is plenty and would be great if even a few of things could be taken care of.



Thanks in advance!

Val

Longish Update

It’s been a week since our visit with the surgeon in the cancer clinic last Wednesday. As I suspected, there was really no reason for the visit. The radiation oncologist back on May 1st requested a referral – which wasn’t necessary. However, since we were there, and waited 3 hours to see him, we did talk with him.

He asked how Dave was, and we explained briefly where we're at, and we asked him about the tumor. I explained how at the end of March it was really stinking - like it was dying when Dave coughed or gagged up some gunk. He nodded. I explained that it no longer smells like that. I said that he had coughed up some chunks of stuff and he just nodded some more. He said that the tumor could possibly have some die off of it’s own, and although it's not common, it can happen that he could cough up chunks.

I also explained how something has changed, that Dave started vomiting around the same time (end of March) and it was brutally violent and painful because of the force it took to get the contents of his stomach past the tumor. I said that about 3 or 4 weeks ago, they stopped being violent, and if he vomits it actually passes by the tumor quite easily. He said he didn't know why that would be and so had no explanation.

It was obvious that he saw us as desperate patients grasping at straws.

He then proceeded to push Dave to get the stent put in to make his life easier. He was concerned, and really just wanted to help I'm sure, but it wasn’t helping. He asked why Dave didn’t want it. We explained that we're doing alternative therapy, and we're still intent on healing, so Dave doesn't want to have to deal with a stent for the rest of his life. Also, if there were complications or if it were uncomfortable, it would put Dave over the edge after the feeding tube difficulties.

Dave had no intention of putting the stent in as that is the same as giving up, or admitting defeat. (He's pretty stubborn when he wants to be!) As usual visiting another doctor temporarily threw some doubt on the possibility of survival. It's sad that a place that should always offer hope can be so bleak. (I will mention that this surgeon was still 100 times more pleasant to deal with than our previous oncologist.)

We also asked about just getting a scope done to check on the cancer, and he said he wouldn't want to do it unless the intent were to put a stent in. I mentioned again, that we’re wondering why when he’s sick, it seems to pass by the tumor a lot easier than in the past – which is why Dave would like another scope. Again he didn’t know. I said, “And if Dave were able to eat on his own again....?” He said he would be delighted to see that, but this is a progressive disease. It doesn’t regress. So, we went home, and tried to screw our heads back into a positive state again, which is difficult when the doctors insist you’re going to die. It takes a couple of days to get that outta your head. Here's the thing. I KNOW and believe that people beat 'incurable' disease - AND they beat them with alternative treatments other than chemo & radiation. I have the feeling that many run from their oncologists when they start getting better, especially after their oncologist has already given up on them.

We got the results of the swab around his feeding tube. There is no infection, which is good! But we still don’t know why it’s hurting him so much all of the sudden. He called again last Thursday to say that it’s still very painful when he changes the dressing and moves the tube around. They don’t know what the problem is and said to give it a week or so, and if it still hurts to go back in to see them. I guess they’ll try removing the tube and putting in a new one to see if that helps. Although it’s a ‘simple’ procedure, it will still be painful so hopefully that can be avoided.

Last Wednesday evening he had acupuncture. Unfortunately he found it very uncomfortable, and not nearly as effective as it had been in the past. (His back muscles have been extremely tight.) He decided that he wanted to try massage therapy. Last Thursday I was able to get him into a place that I’ve used in the past, and although they were booked into June, they just had a cancellation if he could get in within the hour. Thankfully a friend was able to quickly pick Dave up and take him there. Thanks Frank! (Dave has far too many friends, which I used to complain about in the past. We couldn’t go anywhere without him running into people he knew. It’s coming in handy now.) The massage was great and she said he was full of knots. He was able to get back in today. I gives him some relief so it's worth it.

Last Thursday evening we went out to watch Dave’s men’s baseball team play. He’s been playing with these guys for a long time. They had a team shirt for him! He felt OK and stayed for well over an hour. Normally something like that would wipe him out once he got home, but he was still OK for the rest in the evening. It's kind of up and down though, as Friday evening wasn't a very good one for him. (Back pain.) Saturday morning he got up and felt quite good. He drove and picked himself up a newspaper. Sunday morning however, he felt bad. He still wanted to head to church, but he really wasn't feeling well while we were there. It was hard for him to walk home. (We only live a few houses away.) He came home and had a nap, and then felt OK. A friend came in from up north with his son and spent the afternoon cleaning up our garage while Dave sat and 'directed'. It was good to get some things cleared up in there.



Yesterday we enjoyed most of the day sitting out in the backyard. His brother and niece came in from out of town for a bit. Dave also still goes for a short walk pretty much every day.

Tomorrow morning we have the appointment with a different oncologist. (This is mainly because I complained that they insist we see our family doctor at this point.) Dave has a number of issues that I'd like to discuss with her. (His ever changing back pain - it seems to be muscle pain, but it's seems to move around into different spots every day. He also still has a stomach difficulties, like feeling full, nausea, and occasional vomiting.) I have a few thoughts about this that I'd like to discuss with her. I'm really hoping she's helpful. (Dave really doesn't want to go, but I have a good feeling this time. Let's hope I'm right.)

Thanks everybody for your positive feedback and prayers! It's important for us to have this kind of support. It has been tough for us lately. With summer weather, it's hard for Dave to sit home so much. (He would take off if he felt up to it.) It does get depressing. It's hard for both of us not to miss our usual life.

Val

FYI. I have the 'list' almost ready to post. I hope to have it posted tomorrow.

Quick update

Had the feeding tube checked out in the radiology department on Monday morning. They agreed that the site itself looks great on the outside, and were at a loss as to why it is suddenly a source of so much pain for Dave. They did a scan of some sort to see if they could see anything wrong on the inside -but everything looked fine. They took a swab of the site to check for an infection and said to call back in 2 days to find out the results. (And they gave us a prescription for antibiotics to fill if necessary.)

Oddly enough a few hours later I got a call from the surgeon's office yesterday that Dave has an appointment Wednesday (tomorrow) morning. (The surgeon did the endoscope and biopsy back in December, and arranged for the feeding tube to be put in. I also spoke with him months ago when I was trying to get laser therapy or PDT for Dave.) I asked what the appointment was for, and they said it was a referral from the radiation oncologist from back at the beginning of March. We don't know what the purpose of the visit is, and I think it might be a mistake since we didn't do radiation, but we'll go anyway. Hopefully it's not too much of a downer and maybe it'll even be positive somehow.

Dave has been taking T3's for a few days now and so is finally getting some sleep because of them.

We went for a short walk this evening.

Dave is tired and weak, and we could both use some encouraging right about now.

Thanks everybody for your concerns and prayers.

Val

Oh. And a lot of people have asked how they can help out, and some have even offered to arrange for a 'work day' of sorts. I think it would be easier and less stressful (for me) if I just post a list of what we could use help with and if you're able to take on one of the tasks just let us know. I hope to get that together later this week.

Groundhog days

Hi All.

The weeks are passing by very quickly at this point and our lives seem to have taken on a kind of groundhog day feel. Things seem pretty routine but are very boring - especially for Dave. I have the distraction of going to work Monday to Friday, but Dave is at home. He just doesn't feel up to going out much and prefers to be home where he can rest.

Yesterday was a good day for Dave, but for the most of the week he had it pretty rough. He's had a lot of lower back pain (same pain that he had 10 years ago after injuring his back). On Friday evening he didn't sleep at all because his sciatic nerve (another old injury) was really bothering him - but interestingly he decided to go down and let the dog out himself when I was busy Saturday morning, and then when he came back up the stairs his sciatic wasn't bothering him anymore. (He normally doesn't do the stairs unless I get him to do it for exercise when the weather is crappy.)

Saturday morning he had a lot of pain from his feeding tube area. Although it looks great on the outside, it's very tender when he moves the tube itself. So, when he changed the dressing Saturday it was excruciating for him. I decided to contact the hospital radiology unit to ask them about it. (When they put his feeding tube in they said to call them directly with problems - not the family doctor, or emerg.) They`re closed on the weekends, but a radiology nurse called me back. (She remembered Dave from all his earlier issues and she was really nice.) She made an appointment for him to go in early Monday morning to get it checked out. 

Dave took some pain meds for the feeding tube pain in the morning and felt pretty good all day. We went for a walk later in the day and in typical form he wanted to walk much farther than we normally do because he was feeling good, but I wouldn`t let him. We walked a little farther, but you never know how he`ll feel coming back. Anyway he felt good after the walk - which isn`t usually the case. A few hours later after he ate, he started getting abdominal cramps and it became very painful. It kept him up all night on the couch. So unfortunately he hasn`t slept for 2 nights. I`m not sure if the abdominal cramps are related to the feeding tube pain. We`ll see what they say tomorrow morning.

This past week we`ve had a Cardinal nesting in a potted tree on our front porch. It`s pretty neat. The male comes around and sings out front. Yesterday 2 of the 3 eggs had hatched and the 3rd egg was rolling around in the nest! I`m sure it`s only a day or two before we hear the fledglings chirping out asking for food! (This one has it`s mouth open, but it`s not making any noise yet.)

Anyway, that`s our week.

Take care,

Val

TVDSB Award Night

 I apologize for all of you that have been hoping for an update sooner than this. It’s just been a very busy few days, and I had no time on Wednesday or Thursday to write this.

On Wednesday we had an appointment with Dave's oncologist. The doctor in the ER last week strongly suggested we set up an appointment to check in with him, as it had been a few months since we'd been in there. Going in we felt the purpose was just to discuss symptoms that Dave's been dealing with and see where he thought the cancer was at. (The symptoms being pretty much constant nausea, occasional vomiting, occasional headaches, chest pain around the feeding tube, back pain, extreme fatigue, hands tingling & feet falling asleep. We also wanted to ask about symptoms that we think are encouraging like the ‘chunks’ of things Dave brings up and the fact that recently when he’s brought up some of his dinner, it’s not violent anymore at all. It seems to pass easily by the tumor now, when in the past the force required to make it past the tumor was very violent.) Again, I apologize for the graphic detail – but that’s where we’re at and we have no shame anymore.He seemed at a total loss as to why we would want to speak to him - as he had no test results to review and no chemo to prescribe. Apparently he doesn't just 'see' his patients. I explained that after being in the ER last week for dehydration, the doctor there strongly suggested we follow up with our oncologist because it had been a few months. He very sarcastically said’, “What a wise ER doctor.” - like “I’ll have to track him down and tell him never to do that again”.

I also mentioned my displeasure at being told on more than one occasion that we should be seeing our family doctor at this point. I don't feel that's right - as GP's refer patients to specialists for a reason. He told me that it's because of the way the hospital receives their funding, they receive more money for new patients, - so there is a lot of support for new patients but very little support for patients like Dave. (My growing suspicions that chemotherapy & radiation are a lucrative business are being reinforced at this point.) I pointed out that I didn't believe that he or anybody that worked there would send a loved one to their GP, and he said they'd be in dire straits if all cancer patients insisted on seeing an oncologist. ??? Really? It's unreasonable for a cancer patient to want to see an oncologist?

We talked about some of the symptoms Dave was having, like constant nausea, occasional vomiting, occasional headaches, chest pain mainly around the feeding tube, back pain, extreme fatigue, hands tingling & feet falling asleep. A few of these are apparently residual effects of chemotherapy, and for the remainder they suggest pain meds and/or anti-nausea meds. (I was hoping to find the source of the nausea, not mask it.)  We also wanted to ask about symptoms that we think are encouraging like the ‘stinky chunks’ of things Dave brings up and the fact that recently when he’s brought up some of his dinner, it seems to pass easily by the tumor now, when in the past the force required to make it past the tumor was very violent and extremely painful. (Again, I apologize for the graphic detail – but that’s where we’re at and we have no shame anymore.) He can’t be sure, but thinks the chunks are likely bacterial secretions, and the fact that the contents of his stomach going up past the tumor more easily are likely just the digestive system adapting. ???

At this point Dave doesn’t want to do another catscan because he said he feels like a toxic soup after it’s done with all the chemicals they inject you with, and the doctor didn’t think a catscan was necessary either. The bottom line is that until Dave is able to drink again on his own, nobody will take notice – which is understandable.

The only good thing that came out of it was that he referred us to another oncologist for future visits, likely because I complained about being sent to our GP for follow up. We had her once, when he (our regular oncologist) was away, and I really liked her. (Much younger than him, and obviously less jaded.) We’re supposed to see her in 3 weeks, but I’m sure Dave won’t want to go. He didn’t want to go to this appointment either, but I pushed him. As a caregiver, thought it was the right thing to do. Unfortunately being there is depressing and it takes days to screw your head back on to get in a positive state when you’re done.

On Wednesday he also had acupuncture session, which went very well. He fell asleep through it again, and said that his back felt much better. In addition to sticking pins in him (I’m sure there’s a better term for that), she has used a ‘moon car’ to quickly massage his back first.  It’s a funny little device with magnets in each wheel and he said it felt great. (I’m not even going to attempt to explain the purpose of it and how the magnets help.)  I apparently need to locate and buy one of these things. He also asked her to show me this funny technique of rolling the skin up along his spine with your fingers that feels good, but hits painful points as well, yet this is a good thing somehow. It’s easy and seems to really help him. I think I’m finding a new vocation. Somehow we've crossed over from being a couple of ibuprofen lovin' junkies to alternative therapy seeking vegans.

On a positive note, last night  was the award ceremony for the TVDSB Award of Distinction. It was a long evening for Dave as his limit for heading out somewhere is  usually only about an hour long, and this was over 3 hours. We're happy that he felt up to going and that he was able to stay for the whole evening without much discomfort. When we got home he had a lot of back pain though. He had a rough night and is still spent today. The evening was special and we’re so happy that he was able to go. He had a large number of fans (co-workers, family) that showed up and cheered for him when he got up to receive his award. We stayed afterwards and Dave chatted with his friends. It was good to get out.

This is the paragraph they read about Dave as he received his reward:

"Dave's effect on Clarke Road is like the ripples of a stone dropped into a pond. The ripple effect is far reaching into the community of students, staff and families." - A colleague

"Dave's personal life and teaching career truly embody the Board's Vision of a "Caring, Learning Community." His passion for teaching not only the curriculum but also life's lessons in the classroom, on the sports field, and in the halls during those teachable moments make him a positive role model for both students and staff. Dave is a teacher who has a special touch with students who are "hard to reach," listening to them and offering helpful advice. Students just seem comfortable talking to Dave about what is going on in their lives. Outside of the classroom, Dave uses coaching as another opportunity to encourage students to develop good character traits such as discipline, teamwork and perseverance. He leads by example in promoting compassion, trust, loyalty and mutual respect. Everyone at the school remembers when he gave a developmentally challenged student the opportunity to participate on the Clarke Road hockey team. Though the student could not play, Dave made him a member of the coaching staff. When the student later died of his medical condition, Dave built a cabinet to mount the boy's hockey sweater in the school foyer. The depth of concern he holds for all youth is remarkable. He continuously raises the bar for himself, his colleagues and his students through his personal quest to engage, support and challenge everyone to reach their full potential."

Right now it’s a little easier for Dave to be upbeat when he’s not feeling too badly, but when he’s uncomfortable for days it really wears on him physically & mentally. He really just wants to start feeling better again. 

Thanks to everybody for your encouragement, support, and prayers. It’s all so important right now.

Val