Wives of husbands with Stage IV Colon Freaking Cancer

[wandalein]

Hi AngelaN, I have attached some links about Oncolyn & Tumeric. Oncolyn is a U.S. patented product derived from three edible plants and a unique immune enhancing botanical extract with Anti-carcinogenic and Antimutagenic functions. Tumeric, yes, the East spice, which is really good sprinkled on food, is also sold as a supplement.

http://www.aviva.ca/shop/products.asp?i ... &catid=181

http://www.oncolyn.org/

http://www.cancer.org/treatment/treatme ... s/turmeric

http://www.cancerresearchuk.org/cancer- ... wel-cancer

[Kathleen808]

Hi Everyone,

I haven't read everyone's entries but I am thinking of all of you. I am in the hospital again with Dick. Our "staycation" in Waikiki got cut short with a trip to the ER and a partial bowel obstruction. Then they did an echocardiogram and see fluid around his heart. They said it was a fairly routine procedure to drain it but Dick has been in incredible pain anytime he is awake for the past 6 hours. I finally paged the onc and said we wanted to machine where he controls the pain meds so we don't have to wait 15 minutes for the nurses. The onc is setting it up. It NEVER gets easier seeing your loved one in level 9 - 10 pain. Feeling somewhat helpless. Just holding his hand and trying to make sure the pain does not get to that level again.
Hugs, prayers, holding you all in the light.
Aloha,
Kathleen

[Marian1961]

Kathleen, I'm sorry your get away ended up in the hospital instead of the hotel. I hope things will improve today.

So, I was wondering if some of you would share your thoughts and experiences with denial. With family and friends, at this point, I'm just blunt. My brother, the one living with this monster every day, is another story. I never know quite what to say/do when he makes statements that are just wacky, untrue, AND I know he knows differently. I get it's denial. My dilemma is what I should do when these moments occur? Agree? Remain silent, which sometimes is just awkward or gently offer correction? I just don't know. When he says things I know he knows better about, I don't have it in me to comment otherwise. However....I'm left feeling like I lied to him, or did not support him properly or if I say "that's not quite right" then I've stepped on his hope or squished his moment of denial he might have needed. I'm rambling, I'm sorry, but this is becoming an increasing problem and I really don't know how best to handle it. He's doing quite badly. The chemo has just not worked for him, any of it. He looks terrible. He feels terrible. His pain is not, IMO, under control. I'm not at all sure what happens next. Or when. But time is a whole shorter than I once thought.

[Mojo]

Kathleen, so sorry about Dicks problems. I hope the pain had been taken care of. Sending hugs n prayers.

[Val*pal]

Marian, I totally get your frustration regarding your brother's denial. My husband, who passed away 6/20, was the same as your brother in his level of acceptance. It made it difficult for me as well since there were practical matters that had to be dealt with in light of the fact that his oncologist told him in late May that he had less than 2 months. For example, I had to get him to accept in-home hospice since the oncologist made it clear that there was nothing more she could do on her part. I desperately wanted him to do the hospice route since I needed the support almost as much as my husband. He did agree within a few days and I managed to get him services within 12 hours. Hospice helped a lot, but it made me feel terrible that I had to pretty much force him to accept the fact that he was dying. Despite everything the oncologist had told him the last few visits, he would accept the prognosis for a brief period of time (the fact that he was dying), then go back to behaving as if he weren't dying. His acceptance levels fluctuated hour by hour in the last week.

One of the most painful things I had to experience in regards to Danny's denial of his impending death was his plan to go to Las Vegas this August. In late February he called me at work one day to told me he had just made the airline reservations and it was all set. It broke my heart because I knew he would never see Vegas again. It forced me to remain calm and accepting, though I certainly did not encourage talk about the trip. In early April he texted me at work to say he was about to reserve hotel rooms in Vegas or August and he wanted my opinion regarding a choice. Again, I had to remain calm and go along with his desire to book these rooms even though I knew we would never see them. It tore me up inside and it still does.

All of Danny's denial made it harder on me, I think. I would have loved to have some very honest discussions about his last wishes, but he did not want to discuss that and I couldn't make myself bring it up. He did tell me which suit he wanted to be buried in, and he also sent me and his sister to the cemetery a day before he died to put a deposit on a crypt in a mausoleum where his dad is entombed, but whenever I attempted to elicit more info, he would shut down.

However, despite the inner frustration I sometimes felt, like you I knew Danny had to psychologically deal with his death in his own way. If he wanted to believe he could live, then I was not going to dissuade him. The only rule I made with myself was that I would not directly lie to him. For example, on the few occasions he asked me if it was true that he did not have long, I acknowledged that was true. I did tell him on the day before he died that I knew he must feel totally alone in all this because there are some things that are just too difficult to share . . . and he just nodded.

Needless to say, Danny's denial has added layers of complications to my having to deal with his estate. Though most of it is clear cut, I do have to file in probate court since he died without a will and a few of his assets were only in his name. I am still the beneficiary, but it has caused me extra stress, worry, and work. Sometimes I feel little spurts of anger at him for having complicated things, but I know that he did what he did in order to keep going. Some people can accept the end, but he couldn't. He did not intend to make things more difficult for me or his other family members.

My only real suggestion to you is to try and get your brother to acknowledge his wishes and the whereabouts of a will if he has one. It makes things easier. If I had to do it over again, I would have given Danny a small notebook to jot down anything he knew I might need to follow up on if he became incapacitated. I think he might have left me a little more info.

I don't think there is much you can or should do about your brother's denial. As hard as it is, I think you should let him set the tone and the pace. However, if he asks you anything directly, don't lie. The hospice nurses and social worker we used were very honest with him about his life expectancy. Three days before he died, the hospice nurse told him he was in liver failure and told him she could see he was weakening.

Good luck. The stress is overwhelming, I know, but hang in there and remember that your brother is doing the best that he can to deal with all of this.

[Marian1961]

Thank you, ValPal. There are days I feel like I'm swimming upstream in mud. Part of the difficulty I'm having is that some slow shift occurred from diagnosis to the present. From the beginning, his diagnosis was pretty bad. He was, literally, hours from death when he got to the doc, the ER and emergency stoma surgery. The first thing he did after that surgery, before chemo began, was see a lawyer and write a will. He told me the situation was dire, he wanted to get his stuff in order and then fight. Ok. Then the FOLFOX failed, the Folfiri has kept the giant tumors from progressing but has not reduced any of them in size or killed them and no surgery has been possible. It just keeps getting worse. Somewhere in all that, he decided he was not, in fact, in a dire situation. He was going to beat it. Have surgery. Reverse the stoma. Go back to regular life. I don't think any of that is going to happen. Next week is a meeting with the Onc, where "the next step" is to be discussed. I don't even see a next step. Maybe a clinical trial. Maybe radiation. Maybe nothing at all. Last night brother said to me "so next week I'll probably get my surgery date". I just said "we will have to see what Doc says" but I was thinking OMG, that is not at all what is going to happen. So 10 months ago we started this hell journey in a more aware place. And I'm not skilled enough to know how to deal with the new murkiness.

[Val*pal]

Marian,
I don't think there is anything you can do about your brother's present level of denial. My husband did the same. He kept clinging to chemo treatments even though they were killing him, and then he totally revised what his oncologist had told him. In April she told him that a sizable tumor in the peritoneum was pressing on his small intestine, but that there was nothing more that could be done. A few days later he was telling everyone that as soon as he got a bit stronger, the oncologist would either let a surgeon step in or he would get radiation. I remember just staring at him with my jaw dropped to the floor the first time he offered this revision to someone. But I guess that is how a patient sometimes has to deal with this horrific situation. A hospice counselor told me to meet him where he is at, and I'd been doing that all along. If he wanted to think that there was surgery and/or radiation in his future, so be it.

I think as caregivers we have to always keep in mind that we are not the patient. We only glimpse what the patient is going through. So however they want to spin the prognosis, that's okay. If they didn't spin it, they'd probably go mad. I think the human brain has a shut-off switch when raw emotions get too overwhelming. I know I experienced that during my husband's passing and funeral. One moment I thought I would collapse with grief, and the next I was tickling my granddaughter. The brain probably protects us.

Val

[Marian1961]

"meet him where he is at".

That was exactly what I needed to hear and be reminded of. Thank you.

[AngelaN]

Hey everyone,
It's been an interesting few days. We went to the Jersey shore for a vacation this week. DH has been doing really well, eating a lot. My MIL had a temper tantrum and stormed off and went home. She sent me an email and told me she can't deal with DH's cancer because she is too depressed about her sister's death 2 years ago. ARE YOU @#(%^#Q$%#%@ KIDDING ME??? Grow the F up. I don't want to deal with it either, but I do every single day. This vacation was about my husband having fun and enjoying himself before he started chemo again. So instead his mother makes an a@@ out of herself.
We just got an email that the oncologist got us an appt with the thoracic surgeon for mid Aug. That's a HUGE breakthrough - the oncologist has not really supported surgery and we had a bit of a CT fiasco two weeks ago (Penn thinks there are new liver mets, UPMC surgeon says it's post op changes). So he is feeling really good that we have this appt. And I have an appt for acupuncture for his peripheral neuropathy. A few studies have suggested it will help and for sure it's not going to hurt him. All in all it's been a great week for him.
His mother's attitude makes me want to spit though. If she were my mother I'd tell her to go pound sand. I am trying not to react too much because he doesn't need the negative energy. But boy would I like to unleash. Any advice?

[Marian1961]

The fact that you were able to come here and have a little vent vs creaming your MIL in the head says a whole lot about your patient nature! I would not have been able to abide her behavior or her email. I am just beyond that level of drama. I understand it was your husbands week of downtime and so unfair for him to have to be burdened/bothered by his mothers selfishness. Having said that, you may have to institute some boundaries for MIL as you continue on this journey. If she can't deal with it, she's out of the loop and not welcome. Cancer is damn hard work for everyone and no one needs that kind of crap. I am beginning to think there is some form of mental illness that goes along with cancer diagnoses, except it isn't the cancer patient wigging out. It's invariably a family member!

[Val*pal]

Dealing with serious illness really shows you who has your back, doesn't it? I'm so sorry you and your husband had to experience his mother's melt down. That is NOT what he needs right now. Hang in there.

[AngelaN]

Val and Marian
Thanks so much for your support. I read your responses to my husband, he chuckled. He knows I am doing my best and trying to keep the peace at the same time. But he knows that when push comes to shove, he is #1 and I have his back. Always. He is feeling more positive today, hoping that chemo won't be as bad as rounds 10 and 11 were back in March/April.
Marian - I was exactly where you were in the beginning with my husband. But I have let his desires guide me into finding the right treatments for him. I have taken notes during every conversation w the oncologist so I could go back to them if needed. Several times my husband has told me I am being negative (like when the surgeon told him he would drive 3 weeks post op LAR and liver resection and I told him he would not be driving until at least 6 weeks post op...)
I am very careful with what I say to my husband most of the time. I am a physician, so I know a lot more than I let on sometimes. Like he would get 12 rounds of chemo before surgery. He flipped out and refused to believe me. He ended up getting 11 prior to surgery. I have to try to be a wife sometimes and wonder with him rather than tell him what will happen next. It's a fine line between being honest and squashing hope or causing a downward spiral. You are in a tough spot.
Angie

[Marian1961]

Glad your husband got a chuckle. Might as well laugh at some of the absurdities that come along with this disease.

I think your husband is very fortunate to have you as a physician-wife. Not sure it's the greatest thing for you. It's hard to be ignorant but it also offers a bit of escape. I really feel for you knowing all that you do and having to put your wife hat on first.

[AngelaN]

Kathleen - how is your husband doing?
Angie

[mdezdez]

Hi all,
Lots of interesting information and experiences on this thread. My wife was only diagnosed with Stage IV in February, so we are pretty new to dealing with everything.

The oncologist has been consistent that there is not medical cure for the advanced nature of her cancer, only a palliative approach to maximize quality and quantity of life. The oncologist gave her years, but not decades, with aggressive chemotherapy. The number and location of her lung METS mean they won't consider surgery or radiation. Surgery is only on the table is she becomes obstructed or her liver function really goes downhill and a lobe resection might fix it.

My wife is firm in her belief that she can beat the cancer and went so far as to go on a chemo break after the first two cycles to try non-traditional medicine instead of chemo.

Only a few weeks after stopping chemo, pain started in her back and gradually got worse and spread to her abdomen. She ended up graduating from Tylenol to Dilauded to manage the pain. A new CT scan showed a new abdominal mass, lymph nodes now measurable on CT scans, and more lung mets.

She started back on chemo (Xeloda) but elected not to go back to FOLFIRI/Avastin. I'm really concerned about her weight loss, she is down from 135 pounds in January to 100 two weeks ago. She is less now but wont get on the scale (I guess around 95 pounds).

I won't say she's in denial, but I think if she lets herself think she has not much longer, that it would come true. We have been (and continue to go) to a counsellor but only skirt around the life and death topic.

My biggest thing is to see her not suffer, and I know she is already feeling guilty about the current and future impact to our 7 year old daughter. I don't want her to give up, but I want her to start writing things down for our daughter or making videos for future life events.

Any suggestion on how to have that conversation or should I let it be?

Dez

ps. Cancer sucks.