Another Day – Another Story from Another Doctor…wish they could be on same page for Mike

[Anonymous]

So today was even more confusing. First we had the General Surgery team in to see if Mike was comprehending what was involved. Uh…not quite. They told me the surgery was not “urgent” however they could do it tomorrow.

Then, we had Palliative Pain Management Team in to say they feel they can reduce his pain meds some more. Good. So, they have removed the Cymbalta completely, lowered the dose of amitryptiline, lowered the dose of Lyrica and lowered the dose of methadone. None of this can be done too quickly of course. The confusion remains and Mike knows where he is but comes out with the strangest sentences out of the blue that make no sense. He also likes to wander and decided to pull his PICC line out on Saturday night…he was good enough to bring it to the nurses and tell them he didn’t need it anymore because he was going home. So they gave him some heavy duty Nozinan…brutal. He slept all day Sunday.

Next was Oncology and they feel we should wait 3 days until his delirium clears and try to make a decision then. The oncology doc thinks we should have the surgery and then proceed to chemo.

The bonus gift was a visit from Dr. Breau, Mike’s original uro-oncologist who we both trust and like. His view is completely different. He thinks that given the type of cancer that Mike has, which is rare, highly aggressive and difficult to treat, he would opt for no surgery and no chemo. Let Mike get home and have a bit of quality of life before the end.

It would be nice if they could be on the same page. The only consensus so far is , give him a few more days to hopefully become more coherent and less delirious. Otherwise, I have one who wants surgery and chemo and the other who honestly doesn’t think the risk is worth the minimal benefit. Plus not much in the way of quality of life.

Feel free to weigh in on this one gang cause I just don’t know what to think anymore. I may ultimately have to make the decision and I am scared to make the wrong one.

Off to bed now but will check tomorrow night for my brilliant wisdom from the Gregs and Kiowas of the world.

Thanks again for the prayers.

Monique

[tinkerbelle]

Oh my gosh, well Monique I am sad to read all this, I like the second idea, let him clear all meds, get back to normal thinking, and then see…….I would think they have to treat the abcess at some point, right? Are they relating the swelling of the leg to the abcess? I’m confused , and the mri said ? What a dilema, everyday I wonder how your holding up, one day at a time, were all here pulling for ya…and praying as well……

ginger

[tinkerbelle]

What type is Mike’s cancer, is it squamous cell? I see he was clear after surgery, when did it reappear? if it did..

[Ieva]

Monique – In the hospital where I used to work, when the care picture was this complex, a case conference was arranged…..reps from each of the involved teams…to hear each other’s treatment options…to reach a clearer picture for the involved family. Is there a discharge planner involved? (Usually, their role is to coordinate all the teams).
My understanding of what you have shared is this:
problem #1: Confusion….solution: decrease meds until he is lucid and can participate in his healthcare decisions (teams are projecting about 3 days)
problem #2: Pain and swelling in abdomen and leg…..solution: bowel surgery and colostomy (maybe a reversible type?)…not urgent, can wait until he is oriented
problem #3: Bladder Cancer…mixed solution…..one team says chemo….another says do nothing…..

a question: (maybe the answer is posted, and I missed it)…have tests shown a local and or distant spread of the cancer to other body parts?

My heart is with you, Monique – hugs+++!!!
Ieva

[Greg]

Monique:
Ieva’s concise and itemized list of issues is very helpful. I totally agree (with my extremely limited knowledge) that the team approach is essential. I can tell you that hospitals in Toronto are doing this with great result. I had it with my own case where three docs and their associates came together to discuss and concur. It made me extremely confident going forward that I was doing the right thing.

Mike’s confusion will hopefully clear considerably with the reduction in mind-altering drugs. If that occurs, Mike can be intimately involved in the decisions about the other two issues (and you may be able to add more with your closer knowledge). You may see a gradual improvement as the meds decrease in his system.
Colostomy surgery is important but not urgent today. So wait till tomorrow.
The advanced bladder cancer trumps the other two and remains the deeply troubling and upsetting issue, even more desperate due to conflicting treatment choices. This may be where a second opinion is warranted as it is surely a dilemma many cancer patients with incurable disease face. Again, should Mike’s confusion clear up, he will need and want to be at the centre of that decision. Do you opt for length but decreased quality or do you opt for quality with shorter life expectancy? It seems to me that there is no right or wrong answer. Neither is optimal. Both can arguably make sense. There are two answers and you pick the one that you both feel is best for you. I wish it were as easy as I just stated it but of course it is not.

My hope and prayer is that however long or short your time together, it is filled with precious and abiding discussions, memories, experiences, joys, delights, times that take your breath away, laughter, tears, hugging, and contented silence together!

And we’re here to cheer you on and hold you up as best we can.

[marysue]

Hi Monique:

You must feel like you are in a situation with no light at the end of the tunnel. Whatever decisions you guys make will be second guessed at some point. When my mother in law was diagnosed with lung cancer in 2004 while in hospital for a stomach ailment she was given two options. Surgery was out of the question because of her age and frail state. The options were see an oconlogist to discuss chemo/radiation options to not cure but extend her life or leave it alone and live the best quality of life with the time she had left. Mom chose the latter as she said that she was old and would live her remaining days as healthy as she could and not be sick from cancer treatment. She did live another 3 1/2 years before the cancer spread and eventually claimed her.

I don’t know how old you guys are but as the others have said I think it is boiling down to a quality of life issue not a save his life issue. Each surgery or drug treatment he has will take its toll on him. It sounds to me like one doc favors the more “natural” route to give him a better quality of life hence no chemo, surgery etc. with the remaining time that he has. I’m not qualified to make any judgement calls here but you did ask for opinions so I’m weighing in. If you are to opt for any surgeries or drug treatments my suggestion is grill not ask the docs about what the serious odds are for any improvement versus not doing anything. You also have to consider the recovery time for any surgeries as that will probably take longer than usual if Mike is in an already weakened condition. I would suspect that the risk for complications would be higher too.

I’m so sorry to read this as you literally are between a rock and a hard place. If Mike’s mental state doesn’t improve then you will have to run with what you think he would want. Not easy, I know. Hang in there girl, we’re with you. ((((BIG HUGS)))

[Anonymous]

Thank you all for your responses. I appreciate all your input and it is so nice to know that I have a second family supporting me.

Ginger, Mike has a Plasmacytoid variant of bladder cancer which is very rare and only has about 100 cases recorded in the literature.

I do have a great family who have all rushed to my side. Due to Mike’s situation and the fact that my sister Sue also has terminal cancer, we are having a party which we are dubbing “Family Fest 2013” this coming Sunday. No small feat when my Mom and Sue live in Victoria BC. My two other sisters have are with me all the way as is my brother.

Please see my new post for the latest.

Monique

[Author]

Posts