My wild imagination now remembers that all life came out of the sea, so maybe we should give our body simply more water than we are used to.

God bless, prayers and hugs for you, your family and friends.

Kim

This is what worked for me.

Select good oncologists from a large hospital that has an affiliation with a University and trains medical students. For example, Mass General, Johns Hopkins, Cleveland Clinic, or University of Pensylvania.

Eat well and drink three liters of water every day. Avoid alcohol, smoking, fatty foods, or sugary desserts.

Swim laps and compete for fun. Swimming exercises all of your muscles and organs and is easy on your joints.

Don’t worry about your cancer. Enjoy every day that you survive. My attitude is, “What is, is”.

Be overly generous to family and friends.

Never, never, never, never surrender.

Could you share a bit more about what you are doing to keep in the best of health. Thanks.

We do have a body that is made for moving, and I remember in the early days of the HIV, that a man who kept on doing sports every day managed to keep his immune system at bay. Jim’s son also swam.

God bless you and your family too Chibi

Hugs,

Kim

• Give a hug or your prayers to Bill who is on chemo at http://www.caringbridge.org/visit/bill_owen
• A clinical trial after unsuccessful chemo and radiation chokes the blood flow in liver tumors : http://www.metastaticlivercancer.org/aln-vsp/

Hugs and prayers to all of you,

Kim

Thanks for your update. Time is a strange thing: when answering Nicole’s question (http://www.metastaticlivercancer.org/2008-12-17-cancer-treatment/secondary-liver-cancer-treatment-2/) I thought I had to dig a few weeks back only.

“Hard” must be an understatement, at least that’s how we felt. ‘Time heals all wounds’ is a joke I find, it’s just like you say: good days and bad days. For mom it started with bad days for many, many months. Father’s clothes are still there like they were 4 years ago.

For those whose loved ones are still around, do grab and cherish the moments, as in these situations time just flies.

Hugs, Kim

Jim

Thanks for your update. Did kath-e manage to see her great granddaughter in flesh and blood already?

Wishing you all well,

Kim

I have no regrets about missing my brother Dicki’s memorial service which is this Saturday. I’m sincerely grateful I was able to help Dick (and his 2 kids) during a time he really needed help despite past grievances. I’m out of state helping my son and his wife with their newborn and actually told my mom and siblings I wouldn’t be coming home. Dick knew I’d be gone over a month which is part of the reason he agreed to use hospice.

My family is running around trying to throw a big show of a memorial service with several speakers and lots of write-ups. My other brother, who had nothing but fights with Dick, is crying on my mom’s shoulder that he’s not being allowed to contribute anything to the funeral. Can’t begin to tell you all the crazy stuff my family is trying to coordinate. Very fake.

Dick’s son is basically a no-show, not coming around to help out his younger sister who’s been assigned personal executor.

Anyway Dick is no longer suffering.

Chibi

She continues to be at home. Cancer free since October 2010. She is learning to deal with the ravages of the stroke she had in September 2010. She continues to need a lot of physical and occupational therapy and is often to exhausted to handle the pt/ot therapy. We are continuing to believe that God has more in store for her and ask that you continue to keep her in your thoughts and prayers that she maintain the strength to get better and to continue to live on her own.

Thank you for your thoughts and concerns for her.

God Bless,
Kath-e’s cousin, Sandy

Even though everyone enters the world and leaves the world the same way, there are never two stories of how that happens that are the same. You certainly had a unique set of circumstances to deal with. You did a great job in explaining how Dick was dealing with his own reality and it seems that he did do things his own way. It’s a very delicate balance to help and not infringe on someones life. God Bless you for having the courage to walk the path that you did. I hope you get to take time for yourself and your family and all those who helped you to be there for Dick.

The more someone was a part of your life or the bigger the impact they had on your life the bigger the loss to be filled. Everyone has to find their new path to develop a different relationship with Dick. To understand his life and decisions. Especially, when someone doesn’t explain in life why they made a decision, there are ways to contemplate why things happened the way they did and gradually try and find what will help you take the next step. Each member of the family will have their own path of healing from the loss of Dick as son, brother, father, and friend. 20+ kids have a different way of looking at life and death.

When my parents died, I was told to plan how I was going to make it through the first year for important events that bring up memories and make sure the supporting members of the family were there for each other. It helped. (During the first year my sister and I stayed very close and were there for each other for birthdays, anniversary’s and holidays.) Now, trying to keep some traditions and shared memories help me not to feel lost and alone. During difficult times, just making it through the day is success. Time, contemplation and reflection, lead our minds to new understandings and then sometimes we can do more. That was my path back and I thank this community for helping me to heal from the loss of my parents and to realize that I did do what I could for them. I hope and pray that you come to understand how you helped ease Dick’s burden.

(I will send a separate entry for an update on Kath-e.)

God Bless You,
Sandy

I agree: we feel the same about out father: not glad that he is gone, but very, very glad that this suffering is over.

Also glad that Dick could speak to his boy before passing to the other side.

The story of ‘cleaning up the mess’ is another chapter you are in now, just keep an eye on your mom, you did your best for Dick, that’s always good to carry further.

Hugs,

Kim

Chibi

(comment sent by email Saturday, March 19, 2011 11:35 AM)

Hugs,

Kim

His errant son finally showed up, 3 hours late, and only because he had to provide his dad with information to get financial aid at his college. Shortly after he spoke with his boy, Dick slipped into unconscientiousness.

His suffering and pain, both physical AND emotional, have finally ended. Now the kids are struggling with trying to sort through his mess.

To Kim and others who may have followed my posts: Thank you so much lending your ears to me.

Chibi

Thanks for the update. Make sure you rest and get some sleep whilst others are pitching in preferably 1 at a time (so the next time there are still energetic people available to count on).

I never heard a doctor saying this, so I am just going by common sense: if all the chemo is holding up the cancer as good as possible, and then you stop the chemo, logically the cancer is going to grow much much faster as ‘when it was under control’.

Pain is a bit try and error until you reach the right dose, it feels that they know what they are doing. Once the right dose found, it will need to be adjusted once the pain increases, it’s a continuous adjustment and the new dose always takes a few hours to cick in.

Patrick Swayze is told to have refused taking pain meds so he could finish his TV series, in other words: pain meds slows you down. However I don’t see the point in keeping awake all night because of pain.

Nice that some stuff is free, that’s how things should be after contributing whole your life.

If Dick finally can sleep in a real bed it’s up to him what is more important: a free nice bed or his good old house.

How confusing is the idea that Dick want’s “to get better” in order to get hospice at home? My father was taken care of at home until we couldn’t handle it (mind became inflicted with unclean blood making him confused). So he was taken to hospital and the doctor said: we will do all we can so your father can go home again. Few days later father was good to go home and only passed away 2 months later in his own house. So if that’s what Dick wants to say, than the confusion is no more.

Dick’s son needs to be involved: no teachers, schoolpeople, jobpeople need to be dealt with when they aren’t open for this ‘once in a lifetime’ experience. Do know that maybe Dick’s son has no clue how to deal with it or just doesn’t want to be involved in the way you would like him to do (we had a similar challenge with our brother: for some people it’s already too much to handle and they back off). Ask your hospice people for advice how to get Dick’s son on board.

Good that Dick’s daughter has a support group.

Good that the nurse will inform you about signs and symptoms. Just know you could expect unexpected things from the cancer, not from Dick: Dick will be Dick.

Hugs and do get some rest,

Kim
(Back on Thursday)

I wasn\’t aware of this add\’l benefit since Dick\’s condition prior to Tuesdday/Wednesday wasn\’t that critical so I was greatly relieved to hear he\’d qualify for GIP; however, I worried about how to care for him that final night at home. I asked my sister w/the volatile temper and our mom to take him out some food and sit w/him until his daughter could get there to stay overnight. I had my husband help me the next day (Feb. 24) dress and feed Dick the next morning and got him admitted at the hospice facility where he immediately perked up to have a bright, clean room with an outside view, a bed he can actually sleep in (he\’d been in chairs, loveseats, sofas for the past 2 months), and lots of people to chat with.

So today\’s his 5th day. They\’ve increased his pain meds from 60 mg of Oxycontin/day to 120mg. Yesterday the doc added 25 mg Amitriptylline (Elavil) which is a \”mood elevator\” but has a off-label use for pain. As you mentioned, managing his stools is a necessary evil. Dick is focusing a lot of getting stronger so that he can resume his intended goal of receiving hospice at home or at least remaining at hospice while it\’s \”free\” for him. I wondered how realistic that was and it was confusing/conflicting my mother and family as well.

I spoke w/the VNA hospice team nurse yesterday and she said she didn\’t see his condition stabilizing; in fact, she is seeing a rapid decline with \”days to weeks\” left for him. I told her of his dilemna and she agreed it was overtaxing him and that she would try to alleviate his worry by explaining that Medicare would take care of him while he\’s there (she\’d let his power of atty know if he had to self-pay).

I asked if either the VNA hospice team or the doc could talk w/the family — and him — about this reality because his financial/legal affairs are a mess and he\’s only now beginning to open up about them to his POA friend and kids. A family mtg. –sans Dick,of course — is set for this morning with the medical director. I let the son know in no uncertain terms that his presence is mandatory regardless of any test or interview! (I told him he must inform his teachers, boss and co-workers.) His sister is receiving a lot of support from her boyfriend, roommates, and friends. Her musical director is offering to send a group of choral singers (she\’s a singer and music ed major) to Dick\’s hospice to sing for him! So I\’m glad someone has a heart and responsibility. She\’s agreed to take on POA for healthcare (I\’m the second) and the backup for POA for her dad\’s finances. That\’ll really be emotional for all of us.

The nurse is also offering to tell the family what signs and symptoms to be aware of as Dick approaches his final days. There\’s also a bereavement counselor who offers support both now and after death. All good things.

I just got off the phone w/Dick. His voice is noticeably more slurred than yesterday and his breathing very labored (fluids are building up again…tightness in chest). He said he\’s very tired. I\’m certain the new pain/mood elevator med is really kicking in. I\’m afraid Mom, his kids and my siblings will be alarmed at the change. I understand the MD wants to slow him down so that he\’s not struggling to be too physical given his pain and breathing issues. It\’s obvious to me that the downside or trade-off to managing these symptoms is this slow-down. Besides loving to chat/socialize and, more importantly, since he\’s also struggling to get his affairs in order, this slow-down may prevent that from happening.

Day by day, step by step… Thanks for listening.
Jeri

I am reading you… Tell Dick’s son that at his eating place nobody will die, nobody does care when he quits his waiter job. Jobs can be replaced, father’s can’t.

Hospice will be the best placed to advice you what is possible with what’s available.

In our case father’s GP said: “even with all the professional help available, if you want to give real care, it will have to come from the family, as that’s how it goes in al cases he had seen.”

For pain there is medication, which needs to be monitored to find the exact dose in order not to feel pain. But that’s all pain killers do + they get a person overly constipated.

Thanks for updating, take your time, get others involved and make sure that Dick’s son wakes up.

Hugs,

Kim

Medicare has a hospice benefit whereby it pays for all his care, equipment, supplies and drugs related to his illness but either he has to pay for support at his home or he pays a $250/day facility fee for what I refer to as room-and-board. Dick initially thought he’d try in-home hospice even though no one in my family could have cared for him due to age, poor physical condition or other limiting factors.

On Feb.22 the oncologist asked him to come into her office to review the test results and bascially, his cancer was rapidly spreading throughout his pelvic area and legs. His CEA cancer marker was over 850 (it was 450-ish 3 weeks earlier) and his bilirubin count also high. She told him there wasn’t more she could do for him but said he MIGHT receive some pain relief from radiation so we went for a consult that afternoon.

This doc spent a lot of time w/us to show the cancer spread and explained the radiation had a 50-50% chance of success but the pain would certainly return and wouldn’t cure other areas not radiated. But she agreed to do a one-time blast of radiation the next day.

That night — I told his daughter to spend the night w/him — he slept terribly: legs swollen and painful, short of breath. By the time we were getting ready to leave, he was out of breath and saying he felt faint. He was so weak and breathless, he didn’t bother changing out of his night clothes!

At the urgent care part of his treatment clinic, a PA gave him a tap to drain out his chest and got him a radiation treatment all in the ame way.
Because I wondered how we’d care for him this night, the VNA clinical nurse assessed his situation and said he’d qualify for GIP, or General In Patient care.

I’ll write later…gtting lots of calls.

Thanks for the update and congrats for having managed to get things going: all is “fine” when the docs are doing their best, but when their best is not good enough, there is no equally system that takes over, hence you have to organise what you did.

Do know that the “angry people” or “the boycot people” sound familiar: not the first time that we heared the “we don’t do anything people” say: no need to do all this, as long as the patient is fine and doesn’t ask for help, you don’t have to give it. Which is the easy way out to say “I have no clue how to handle this, but my excuse is: nobody asks me to help, so i am fine”.

Be prepared for some excalations in “previous bad relations”, meaning if you couldn’t get along with so and so, that could get worse triggered by all this. Don’t fret on it: no need for bad relations in the first place

For Dick’s idea: maybe the social worker could be entertained at mom’s place, could be a cry for help: “please, I can’t manage in my place, can we continue the rest in mom’s place”. An option you could discuss on the meeting: where does Dick want to spend his last time (hoping that Dick will speak out for himself and not say things in order to please others or suggestions that aren’t clear.)

The “drugdealers”: try an asian pharmacist or google online for cheaper prices if Dick wants to try supplements. It’s a very different thing dealing with a person who still believes in a miracle and a person that has given up on himself completely. Since you call him “drugdealer”, you didn’t contact a person yet in whom you can trust to pay the care they offer. Whoever promises a miracle however is to be frowned upon, only god works miracles, not humans.

Make clear in the meeting that you are merely pushing the car so it can start and drive around the country. You are not going to push the car around the country. “The car” being the help Dick needs from everybody.

When Dick’s son notices a huge difference with his father, it’s good that others will see Dick in person as well and then start opening their mouth.

Wishing you good luck, although out of my experience: it was harder to get hospice/caretakers over the doorstep and a big relief once they saw “the patient” and “the caregivers” and immediately put some order in the mess.

Hugs and keep us posted,

Kim

Yes, the case mgr. responded somewhat indirectly as my communications were thru faxes but my objectives were met: A “family mtg.”was set up for 2/17 w/the oncologist. I made sure Dick “invited” both kids, said they needed to make up their own minds whether they came or not; they did. Our mom and 2 of our siblings also came. I’d shot off a list of Q/A’s for the doc that were designed to bring everyone, including Dick, up to speed and most importantly, to discuss the shift of focus to his next level of care.

Results and reactions were mixed, of course, but on the same day he had an ultrasound (to see if he has clots in his legs), a consult w/cancer pain mgmt. who upped his pain meds and ordered up 2 MRIs (to try to figure out the cause of his persistent leg pain), and most significantly, a hospice briefing from the hospital’s social worker! Very long, tiring day from 8 am to 7 pm. (I asked his son to take him to one of the tests and lunch to allow him an opportunity to SEE and HEAR himself how his dad was doing. I also asked my sister/mom to pick him up from his last MRI and take him home so THEY could see how he struggles to get around.)

The best part is that the social worker/oncologist guided him to the decision that at least he should get the hospice order from the doctor and select a hospice team — he chose VNA — who’s already made an appt. w/him to come out to his house this Sunday! The other sibling is driving in today to attend this mtg. so progress has been made!

Having said that, a main obstacle/distraction/challenge is Dick’s “drug dealer”a distributor for a company named Waoira that sells “natural supplements”, one called “NCD Zeolite” and another called “Agari Gold” mushroom extract. The fellow calls or visits Dick nearly every day and is telling him to quintuple (sp) the dose to zap his cancer and then go to an alternative cancer treatment center in NY or Nevada or Texas. These drugs are about $100/bottle and while the doctors are aware of them, they can’t prevent him from taking them.

At this point, his disease will follow its course regardless of what he or others want. I feel it’s pointless to argue with him about these supplements or trying alternative treatments. My main concern is his safety and care NOW and that’s where the focus needs to be instead of blame, avoidance, and one uppenance. (One sister in town is angry and threatening to boycott the mtg. tomorrow — who cares? — and the other brother is claiming ignorance.)

I’ve been spending the past 2 months w/Dick and nearly every day for the past 2 weeks taking him to appts., listening to the docs, and helping w/his meds. Mom and sister and brother are finally pitching in but Dick is trying to prove he can remain by himself. His son was shocked to see how bad his dad has gotten since he’s not seen him since Xmas. Neither he nor his sister are anxious to disrupt their school/work/social lives. None of my siblings or Mom can physically help him. While I’m retired and live nearby, I’m only am 100 lbs myself. I just found out yesterday that my daughter-in-law and son want me to help them out for 6 weeks since she has a 3-week old baby and my son will be traveling. They are my priority; if Dick takes a turn for the worse, there are other options for him here. If he should pass away, I will come for his funeral, of course. I’ve not told Dick nor my family of my plans yet but it will have a major impact on them as they’ll have to figure something out. I feel like I’m being an enabler to everyone since they refuse to sit down and rationally discuss things.

Wish us luck with tomorrow’s VNA hospice meeting. (Dick initially thought our mom could “”better entertain” the social worker at Mom’s house but I said VNA would need to see his current living arrangements.

Chibi

Thanks for the update, did the case manager respond?

Medical prognoses are accurate if you only do what the clean medical world subscribes. If you add some extra’s, you could gain some extra’s.

Trying to tell a 20+ year old (Dick’s kids) that time is limited, could be a challenge as well.

Hospice should at least give you a guideline of what to do, even if they don’t want to kick in themselves.

Hugs,

Kim

To SK: Again, thanks for your input, Kim. I’m shooting off a fax to Dick’s previous case manager today to ask her for help in getting hospice care for him. I also spoke with his daughter last night who said she’s not seen/talked to her dad in 3 weeks. While I’ve updated both her and her brother (e-mails mostly)with their dad’s condition, his son only offers perfunctory conversation.

I also urged my niece to ensure she and her brother have their own hard copy of their dad’s health care directives since my cousin recently ran into a problem where despite being named on her mom’s documents, the only copy was in the mom’s safe! So when she and her brother were notified, the hospital wouldn’t share any of her information until she woke up to confirm them!

I agree that 18-22 months prognosis is apparently pretty close and that if he has 4 months left, give or take a few months, then hospice IS appropriate now.

Chibi

Nothing to add really, so I became silent. But better update you on my silence.

Seems the doctors were quite right when they said 18 to 22 months, since we are now in month 18 and chemo isn’t stopping new cancers, a few months is still in the 18-22 range.

Needing to pull his pants is what my mother does for the last so many years, it’s a nuisance and mobility is slower. Also on glucosamine and pain killers for the joints.

Feet getting bigger is a bigger concern for what I experienced with our father, that’s a sign that the liver is not able to do its work fully.

Unlike my father Dick has a lung problem (although my father wasn’t able to breath much either and had a scray ruttling sound when sleeping: scary but not life threatening), so in a case of well defined primary and secondary cancers, it was easier to prognose father having only a liver that wasn’t getting any better.

All in all seems the doctors know what they are doing. I remember the doc saying that it wasn’t time for hospice yet. But whit the old prognosis of 18 to 22, there are 4 months left, so one should ask her when she wants to bring in hospice help.

Hugs,

Kim

He\’s decided for now to only take some Chinese supplements (I\’ll get the names later) along with glusosamine for his achey leg which is his main complaint and also a major concern with this icy, cold weather.

The other areas have not changed, i.e., his liver is still about 1/3 involved and the bone lesion on his pelvic bone hasn\’t grown any. In addition to the new tumors in his lungs, there\’s also fluid building up. Obviously the main concerns are shortness of breath, increased swelling (he\’s having problems fitting into his shoes but no diurectics at this time), and intolerable pain.

They ran a scheduled CT scan earliery this week and couldn\’t see anything that would explain the chronic leg pain (it started at his hip but now is affecting the outside of his leg/thigh and down the femur). Dick isn\’t interested in getting an MRI that supposedly would be more definitive in determining if there\’s cancer on his bones primarily because it\’s uncomfortable for him to lie still for an hour and he\’s concerned about \”over exposure.\” The doctor said the benefits to getting an MRI and finding cancer would be they could radiate the bone to provide pain relief.

Dick asked what his prognosis is given the current situation — originally doctor said 18-22 months and that was 18 months ago — and she said she couldn\’t predict an exact date (duh!!). I asked if it were weeks or months and she said probably months.

At that point his case manager switched from the study to the regular case nurse and I\’m trying to touch bases with her to see if hospice is appropriate at this time. Dick will continue seeing his oncologist once a month and the case mgr. said she\’ll talk to his doctor about hospice then in early March. I know he wants to stay in his house as long as possible without any help but yesterday I was rather shocked to see him barely able to get himself into the car (couldn\’t lift his leg without pulling on his trouser pant) or or walk very far at a time. He is using a cane but I think it\’s much more than that.

I ran a few errands with him after the appt. and helped him into his house. It was a huge mess with dishes and papers piled everywhere. Fridge was stuffed with take out and it smelled. You have to understand, though, that was the way he was living before he got sick but obviously he\’s less able to clean up on his own. He didn\’t want me to touch anything, said he\’d take care of it later and hoped his daughter would stop by this weekend.

I guess this is the relative beginning of the phase where he\’s less and less able to help himself. My 93-yr-old mother said that maybe she\’d go help him but didn\’t think she could help her other (infantile) son AND Dick at the same time.

I\’m going to e-mail both of Dick\’s kids an update of their dad\’s condition so that neither of them, esp. the older son, can claim ignorance, that no one told them. My hope is that a hospice team and plan can be put together sooner rather than later and get/force the family together

Chibi

Thanks for the update, any idea what kind of drug study they are doing?

Catherine’s father Bill is keeping a journal of his chemo at:
http://www.metastaticlivercancer.org/2010-06-08-cancer-treatment/the-whole-truth-about-metastatic-liver-cancer/
http://www.caringbridge.org/visit/bill_owen

Ian just started sharing at: http://www.metastaticlivercancer.org/2008-08-25-cancer-treatment/avastin-for-metastatic-liver-cancer/

Wishing you and your family well and looking forward to your next update,

Hugs,

Kim

His biggest complaints have been the expected mouth sores and the relenting pain in his leg. The scan today is including his lower leg whereas the previous scan only concentrated on his pelvis/hip area.

I’ll update you after his appt. this week.
Chibi

Thanks for the update, how’s Kath-e doing?

Would you have any medical follow up results and history about her cancer and the size of liver?

Merry X-mas,

Kim

Chibi

Kath-e is coming home from physical rehabilitation on Thursday!!! Also, Kath-e did see a picture of her brand new great granddaughter!!! She so wanted to be able to see the baby and she did.

Praise God! God Bless Our On-line Community!!!

On Day 1 he gets a short infusion of Pralatrexate and then gets hooked up to 5-FU for 2 days (48 hours). This repeats every 2 weeks is intended for people who have “…cancer which has been previously treated and has returned; has not responded to previous treatment; or for which no standard therapy is available.”

Since he’s participating in the second group of Phase I, there are still a lot of unknowns. Apparently the biggest problem with the trial drug is mouth sores so they have the patient hold ice chips in their mouths for one hour after the infusion to supposedly minimize the sores and reduce any over exposure to the mouth. Of course, this is on top of the “regular” side effects he’s dealt with his 5-FU (he’s been on this since August of last year in combinations of other drugs).

I’ve shared information with Dick’s 2 kids so that they are aware of what’s going on. I told them that we all need to keep a close eye on him to determine if we need to let his doctor know a shift in care (hospice) is inevitable.

I will keep you posted on how he does on this study. I believe he’s stopping the supplements since he’s now on the study and they don’t want it “tainted.”

Chibi

Thanks for the update about Dick! Have a look at father’s liver picture at http://www.metastaticlivercancer.org/2008-06-07-cancer-treatment/metastatic-liver-cancer-3/ : although a huge part of the liver (left top in picture) is infected with cancers, father wasn’t showing symptoms of a failing liver. As far as I understand the symptoms, a liver that can’t clean the blood well will send unfiltered blood to the brain which will affect the patients mental state and or abilities in one way or another.

I was re-reading Dick’s story through your comments and I saw you saying “I’m answering my own question: He doesn’t want help…now. ”

That sums it more or less up when it comes to the help you are offering, but Dick is really trying to get all the medical help he can get.

Unfortunately there is one track mind healthcare that doesn’t want hospice expertise involved when people are still fighting for their live. Yet every day even the healthy people are living an ending life, so the expertise of hospice should be available for all living creatures at any stage of their life.

“Should” is not gonna be good enough here. I do see that Dick is fighting the disease. Seems he also have a list of ’10 things to do still in this life’, a list my father didn’t have (maybe he found what he was looking for already, yet again, he never communicated that in words, and I am sure nobody puts ‘getting more sick every day’ on such a list).

I feel Dick is quite in controle of what he is doing: getting healthy and having quality of life for what he feels quality is. Talking about giving up doesn’t seem to be part of that scenario, for now. And ‘now’ is when he, you and me are living.

You know Dick best: if he is the type that want’s to take his own decisions and not be told what to do, then that’s how you need to approach him.

For herbs and alternative medicine. Jim mentioned mushroom extracts, an mushrooms are quite available in chinese diets, so you could hint to that to Dick (yet hint, not tell him what he needs to do).

The elephant is still the boss of the herd and that seems what the elephant wants

Hugs,

Kim

His CT scan showed more albeit smaller tumors in his lungs and that his liver tumor has increased in size but that he’s still got a “fair amount of good liver yet.” Apparently he got radiation for a bone lesion back in August. He took a 3 month chemo holiday while he traveled to Japan and also exclusively took some Chinese supplements. (He was terribly disappointed to hear these herbs didn’t prevent further spread.)

He’s obviously confused about the study and worried/scared about his future. I feel like no one wants to address this elephant in the room. I’ve told him that I’m available to help out. Right now he’s keeping himself busy which is good, I think.

Will chat later,
Jeri

Take care and cherish the memories.

Chibi

Our deepest condolences.

Thanks for updating us and feel free to drop by anytime with anything.

I am lost for words but share your tears.

Lots of hugs and love,

See Kim

22nd November 2010

I would like tell you that my son lost his battle with cancer at 5.45 pm Australian time. A very brave and courageous man who fought his cancer to the very end and didn’t give up or ever complain.

He was admitted to hospital yesterday morning by ambulance and deteriorated quickly. We took time home this afternoon so he could spend his last days with his family at home. He lasted only four hours.

He knew his GP (who he got on well with) was coming and when he came he tried to say hello and open his eyes when he heard his voice. Just after, his breathing faltered and he passed away with his GP present. It’s as if he waited for this fantastic person to be with him at the end.

His passing was very peaceful.

He gained 2 years and 4 months after diagnosis.

It breaks my heart to tell you all this. I loved him dearly and will miss him so much.

The hospital was fantastic in organising everything for him to come home, even the ambulance paramedics were very moved.

Jim

Thanks for your update. Reading about your hubby, I immediately remembered what you wrote about me June 17th: been there, done that. It shows you have been there and done that as well. If your website is public, feel free to share as cancer is unfortunately affecting all of us.

How much help can you give? As much as you have to offer and the other person is worth the offer. If helping Dick means you and your direct family are suffering, then your end result is negative, and that’s not what you want. You are only one person, you have your own life and responisbilities and have to choose where you put your energy.

It is good to know where your limits are, so you wont spiral down at the expense of thinking you were helping (helping Dick, helping others, helping…)

I would say what you say in other words: be a/the ‘lever’ but make sure you are not (part of) the heavy weight.

“A lot of avoidance and denial will surely lead to lots of regrets” … Just make sure you don’t have any regrets and know that you are not responsible for other people’s regrets.

If Dick doesn’t want to talk about it, so be it. You have tried hard and your approach doesn’t lead to a good outcome for you, so stop your approach. Try a different one or simply say: “if you need me, call me”.

I remember when father was very ill and we still managed to take him out for a walk, how people that knew him, quickly looked away… Maybe Dick doesn’t want to show he has cancer, because what’s more fun: enjoying the bunch of people in the Rotary Club or having suddenly all your friends “look away” because they have no clue how to approach cancer and forget Dick is a person, not his disease?

Again, I can’t answer for Dick what his quality of life is, but it seems that what he is doing, works for him. As an outstander I could say: well, he is divorced, so not all works well. But I am an outstander, you know Dick better and should have a good idea what he loves doing, what he loved doing and what he always has been doing. All that is normally what boils down to “quality of life”.

So what about “when it becomes messy”? Well, you obviously did your homework and you obviously are ready and clear about what you want to do – and what not-.

You should enlighten us about Steven Covey though, didn’t read his book

Hugs,

Kim

Thanks for the update, hope your daughter gets better soon so you can pay a visit to Kath-e.

Would you happen to know what hospice actually did for Kath-e, how many times and how many people they sent?

Hugs for you and Kath-e,

Kim

As for the situation with Dick and our elderly mother and family, it’s difficult seeing what is the “right” thing to do when the mode of communication is “don’t ask, don’t tell” plus “don’t want to know.” A lot of avoidance and denial will surely lead to lots of regrets. As Kim has pointed out and I’m coming to fully grasp, I should be and am grateful Dick is able to still get around and take care of himself alone. Until That Time comes around. Honestly, I’m not sure how much I will be able to help at that point. Although my family does communicate with one another, it is with distrust, anger and bitterness over past slights and present circumstances. Til now I have been the go-to person, the one everyone knows will take responsibility and action. But the toll on my own family is wearing down my willingness to participate.

Don’t get me wrong: I will offer support where I can but the “heavy lifting”, emotional and physical, will have to go to Dick’s grown children and another sibling (there’s 5 of us) or to hospice. This may sound selfish or vengeful, even uncaring, even more reason to accept the limits on my capacity for helping him. In fact, I actually sense my so-called “Circle of Influence” is shrinking along with my “Circle of Concern.” That isn’t what Steven Covey had in mind when he discusses how to examine what you can do instead of focusing on worries over which you have no real control in his book “7 Habits of Highly Effective People.”

My own husband faced his own highly aggressive subtype of non-Hodgkins’ cancer and an uncertain future last year by holding those closest to him even closer, and by preparing for the worst. We talked and cried about everything, from our finances to the besuty of nature he’d never stopped to appreciate before to what I should do with our properties and other assets after he’s gone. I accompanied him to every infusion, test, and exam. I updated our children, friends and relatives with a website and phone calls. I was so relieved to hear his tumor had been zapped and his cancer had gone into “total remission.”

Dick went through a tumultuous divorce when he was first diagnosed with colon cancer 4 years ago. His kids were barely talking with him last year when he got his current diagnosis of Mets in his liver and lungs. He bullies our mother and the brother who lives with her. So of course his support system — as well as his experience with cancer — is way different from my husband’s on every level. He doesn’t have anyone to intimately talk with and he surrounds himself with uncritical strangers. Yes, he knows about hospice and support groups but prefers the support he finds at the Rotary club, restaurants, shopping centers, public events, etc. These associations fill up his emotional vacuum which, I suppose, is better than sitting at home feeling miserable and lonely. To each his own, they say.

I know what I’m expressing originates way before Dick’s current situation, and is perhaps pushing way past the intent of this website. I apologize for taking advantage of this site’s goodwill. But it is what it is and is certainly affecting how our family is dealing (or not dealing) with Dick’s terminal illness.

She is trying to come to grips with the fact that her right side is messed up from the stroke. She is at a physical rehabilitation facility about an hour from her home town. The goal is for her to be able to get from point a to point b so that she will be able to handle the basics and be able to live on her own. Praise God for her multiple cancer healing. God’s great gifts are a mystery. I praise and thank Him for what He has done for Kath-e and the physical, emotional and spiritual healing He has caused in the whole family. We are believing God to continue to heal Kath-e and let her be able to get around and be His voice to say what He has done in her life. His ways baffle our small ways but we believe that God will finish the work He has started and we will continue to sing His praises in thanksgiving and continue to pray for all our families in our web community.

As far as Kath-e’s medicine Daughter SK, she is off all the heavy duty pain medicines and is only on what was the starter dose of the breakthrough pain medicine and she is asking to be taken off that. What the rehab doesn’t get is the migraine medicine need and her family is working with the rehab to make sure she gets the correct amount. I’m sure you remember the Bret Michael’s brain bleed event and the monster headaches and trauma of the brain and reabsorbing the blood that the media talked about. Kath-e and I both have migraines for different reasons and because she can’t take the regular migraine medicines because of her brain disease that she has mentioned and the trauma of the bleed/stroke she really needs the migraine medicines that she is able to take. As for the cancer findings, you mentioned, there hasn’t been any since findings she was tested on October 4, 2010. I can’t say what confirmation tests were done but thank God that the doctors can be baffled once in a while. I want to try and analyze how can God heal part of a person and wouldn’t it be easier to heal all the cells than distinguish which ones to heal but instead I just say Abba-Father thank you.

Chibi, I don’t know or understand the specifics of your situation but asking a mother what she wants to know should give some insight. At 93, depending on how she processes information, she knows what she needs to know and what she can deal with. Taking both her and your brother into account, what will you have wished you did for her or said to her. Sometimes it’s not what everyone agrees on, it’s what you can live with. As for the kids, I can only offer my own experience, I’m the typical middle child, my sister who makes all her decisions with her heart couldn’t deal with any of the emotions when my mother passed away and my brother who is the oldest didn’t come back for either of my parents funerals. The only contact he has with the family is when I call him every year on his birthday, which is today. I called him for my mother when she was living and I call him now for his son who at my mother’s service said I’m the only connection my brother has to the family and my brother’s son said to me it only takes a drop of water to change the shape of a stone over time.

You may remember that I have spoken of my father and mother passing, and that although many family and friends have said that I went above and beyond… to help my parents, I couldn’t accept that and felt that there was more that I could have done. I wrote those words on this site not to long ago. Well, God, time… does heal that as well. Although I may not say there wasn’t anything different I would do, I can say that for every decision I made at the time I made it for each situation I did my best and I can live with that.

I was going to see Kath-e tomorrow but my daughter is running a fever so I need to wait. I need to ask, please keep praying for Kath-e because miracles are happening. Thank You and God Bless Our Community! Kath-e’s Bear Hugs to all from Kath-e and cousin.

@Sandy:please update us on kath-e, how’s rehab going (is it started already?), what are the doctor’s findings about the cancer, or lack of, and the pain medication she is on now is what and for what?

@Chibi: sorry for answering a bit late, but now I am ‘more back’ than you assumed in your previous comment.

It looks that Dick’s oncologist is on top of things, meaning she knows what to expect, when to expect it. Add to that the side effects of the chemo are gone, since the chemo is gone.

If this doctor says it’s ok to travel, then I would trust her. We also worried about father when he was ill, but some worries were really overworried. As long as he can stand on his 2 feet, walk, talk and think like you and me, you shouldn’t worry. Dick seems ok, “just” that he has a disease with a prognosis.

Meanwhile you did your homework for the scenario that things go down hill, so there is not much to do there.

Although I sound unemotional here, just uttering facts, I am happy Dick is still doing what he is doing.

However his mom is worried too much and his kids are not handling it well together. That’s something -if possibe- that should looked into closer. From a point of view of ‘quality of life’, Dick is fine in my opinion.

You need to know that you are not responsible to ‘clean up the mess’ if that scenario should ever occur. (his oncologist seems to know when the time is right to contact hospice, and hospice is great in ‘reducing mess’, also with the closest family members involved).

Enjoy Dick as you always enjoyed him, get annoyed by Dick as you always have been annoyed by him, that’s how you have been living all this while, and if Dick doesn’t want to change that, then that’s it. It’s his life, not how anybody would like him to live his life.

I would try to get some help in having your mother worry less, and try to solve the problem between Dick’s kids (if any). Do know that even in my family, some were there to help, others walked away, because not everybody can handle the situation by offering help. It’s not easy on anybody.

Big hugs and looking forward to your next updates Sandy and Chibi.

This trip and other recent decisions involving his finances are causing major concerns for his kids, our mom and his siblings who worry about his running into medical emergencies while traveling overseas, and running out of money when he’ll most need it.

It’s now 16 months since his current diagnosis. His doctor says she still stands by her “18-22 months” prognosis. He’s definitely living life his way, cancer be damned. But, his carefree or care-less attitude is killing our 93-year-old mother with worry and creating a major rift between his 2 young kids, one who’s trying to support him, and one who’s running away.

Chibi