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