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Tuesday, May 25, 2010

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.


2 comments:

Anonymous said...

Good morning Richards Family...you have no idea (or maybe you do) how much your updates mean to those of us who care for you....whether the updates are difficult or cathartic to post, the HOPE and TRUST and FAITH in GOD shines through in every update.

"Incurable", "impossible"
...these are words that can never be used when describing God's amazing power...I believe that Dave will be able to march into those doctors' offices and be a testimony to the LOVE and POWER of GOD..

I'm praying for you all..

Phyllis C.

Anonymous said...

Chin up towards the Lord ! I know this can't be easy Val my heart breaks every time I read your posts about your discouraging appointments.... good thing our true healer is our Saviour !! He listens .. and He gives us answers !

I was going to stop by on Sunday but there was a few vehicles in the driveway and a garage full of people so I kept on going I didn't want to intrude...

Thinking, loving and praying for you both every day !

Much Love,
Jeannie
XO