[Luke and Margaret]

Thanks everybody. Here we go!
M

[Luke and Margaret]

One day at a time, and judicious, often medicinal use of the Serenity Prayer….

God, grant me the serenity
to accept the things I cannot change
The courage to change the things I can
And the wisdom to know the difference.

That and a daily visit to the machines at the gym and I am “almost” sane.
Margaret

[Luke and Margaret]

Hi all;
Thanks for the information. Getting the fish oil in a more palatable format would be helpful; it would remove one more irritant in a long line of them.

Beyond the blast percentage, when someone is in remission do they “feel” better? Will he regain lost weight, muscle mass and energy? I think that’s the question most on Luke’s mind these days. I think he’s looking for an answer to “what’s the point”?
Margaret

[Luke and Margaret]

As I read your post I am relieved for you. You have clerity. Not, perhaps, a rosy picture where everything turns out fine, but clarity. It has given you a clear path, and the things you are doing now are so muh healthier that spinning yourself into the ground.

Acceptance is critical, and it does help, but if I might be so bold as to share my own expereince, it does tend to wear off. This kind of situation tends to “slide around”, so that it needs constant adjustments on the part of the caregiver to find your bearings and to do “the next right thing”. It can be darned exhausting!

It does sound as if you are well on your way.

I really “get” the family dysfunction thing. Every family has its fair share of it, I am sure. A crisis like the one we are in seems to heighten it all, and whatever issues are left unresolved or we have been trying to work around in our families tend to pop up in spades!

In our own case, I seem to be giving myself a regular talking to about rolling with the punches and working on a certain degree of detachment from the emotional storms that Luke’s illness is setting off. I particularly hate it on the days when the storm is created by ME; that has happened more than once in the last four months,I am ashamed to say.

Terminal illness in our immediate family has got to be the biggest test any of us will ever face. You are facing it with dignity, strength of purpose, and great clarity about what is good for you. I look forward to hearing how you manage the ups and downs ahead; your insights are helping me!
Margaret

[Luke and Margaret]

Hi Karen
I too made it to the bottom. A LOT of what you are describing is what I have come to think of as “caregiver blues”. There is nothing at all easy about doing this. There have been days when I thought I was going insane, other days when I wished it was all over, some days when I have all the fight and gumption in the world. People used to say “take care of yourself first”, and I had a hard time understanding what that meant.

I understand today. I go to the gym, I read trash, I spend an inordinate amount of time on line, I call up people to “babysit” while I ask other people to take me out and tell me what is happening in the world.

Since this all started I have developed high blood pressure, my hair falls out, and I am crippled with physical pain, all because of stress. So taking care of me first is becoming essential.

As regards your dad…. depression and dementia are extremely difficult to care for, and would have been a challenge no matter what. Add trying to deal with MDS on top of that makes things very difficult. You have said a mouthful. Is my dad insisting on dying and am I fighting the inevitable?

You are completely on the right track. The thing to be ironed out is whether the apparent lax attitude regarding your father is because the medicos don’t see a point in waging a big fight. If that is the case, you will want to know. If they are just unmotivated and sub standard, you want to know that too!

It may be that your father’s presentation is making it difficult for them to get invested. Try to keep that in mind. If you are frustrated, then so are they. We’re all human.

I like your idea of a come to Jesus meeting. It might make a lot of things clear if you ask the touch questions.

A second opinion at a centre of excellence is always a good idea! The more educated you can become, and the more realistic your expectations based on real facts, the less helpless and frustrated you will feel about the MDS. You may need to go through exactly the same process for the mental health related issues.

Good luck. This situation is a complete son of a b****, but so far it has not yet killed any of us caregivers. It just feels like it will.

Margaret

[Luke and Margaret]

What does it mean, to be in remission?

Luke would like to know how much he will “get back”. For instance, he has lost 26 pounds since August. He wasn’t a big guy to begin with; most of the loss is muscle. Will it come back? Will he feel healthy again?

Most importantly to him, will he have to continue to take all this crappy supplemental stuuf, especially the fish oil? (The answer to that is “probably” cause of the heart problem, and I have broken that bad news to him already!)

Sooo….. can anybody help us here?
M

[Luke and Margaret]

Hi Suzanne
Luke’s situation is so darned precarious – timing is everything. Because of heart damage caused by a virus within days of diagnosis, chemo is not an option currently. If he can hold on another while, then it could be, as the heart was recovering. However, last week’s cold virus led to pneumonia, and we don’t really know whether that set him back again.

As long as he was responding to great nutrition, the astounding pineapple juice, and supplements it felt like we might get our time. The last week has been horrible, though.

You’re right, it ain’t over yet. If the levels continue to hold, our best option is still available – Vidaza. It doesn’t affect the heart. That could buy him more time for the heart to mend, and be ready for the big guns when that happens.

If it is too late for Vidaza, I’m not sure what would happen next. The cardiologist says he wants 40% functioning of the heart before chemo. Two weeks ago we were at 30.

Does anyone know if CMML tends to respond to heavy chemo? If so, what drugs work?
M

[Luke and Margaret]

Agreed. Once things start to go, they can go awfully quickly. Since you were first diagnosed there have been some advancements made in treatment, and there are clinical trials going on for new drugs or drug combos. It may be extremely helkpful to consult the MDS specialists at Roswell Park, one of the Centres of Excellence in this area.

Here’s hoping it is just a “blip” and all is well.
Marfaret

[Luke and Margaret]

Hi Fran
Are you sure they lost the tests? Perhaps the delay is because of the results of the last test? One way to clarify is to call your doctor and ask if what you are worried about (lost tests) is really the reason for the postponement.

I understand your husband’s not wanting to make any changes right now. Do you think he could be convinced to get a second opinion? You might break it to him by telling him that you want to know that you and he have done everything in your power to ensure his well being, and that if anything terrible happened (God forbid) you would always be left wondering if this one thing would have made the difference.

There is another reason to go to Mayo. If they are anything like the Princess Margaret Hospital here in our city, they will have a “psychosocial oncology” service. We see a psychologist through that service, and am I finding it really helpful. It gives us a place to go and just process things. Everything moves so quickly and confusingly, sometimes the chance to just sit quietly and talk things out makes the world of difference to my confidence level.

Jim may also respond to your request to get some support to understand everything that is going on.

Luke gets horribly stubborn when he isn’t feeling well. I’m a bit younger than you are, so I still have the strength in my hands to strangle him when he gets like that! I have to control the impulse a LOT! Its darned hard to fight with a sick and cranky guy, but sometimes they have no idea what is good for them. More importantly, you have to be comfortable with what is good for you, too.

Does the local Cancer Society Chapter have a support program? Much of what you are describing sounds so typical of the ups and downs of living with an illness like this – again, just having someone to talk it through with could really make the world of difference!

Wish I could give you a big ole hug; it sounds like one is needed.
Margaret

[Luke and Margaret]

P.S. Do you have a link to your journal? I’d love to have a peek if that is OK with you.
M

[Luke and Margaret]

Hi Esme
Yes, you really gotta watch that showing off your husband’s terminal disease. Some people will do just about anything to attract attention to themselves, hmmm? Goodness knows, a daily journal about living with CMML as a caregiver is just WAY over the top. You should suffer quietly and inconspicuously, making sure you never steal thunder from the family princess.

SHEESH!

Tell ya what, we’ll adopt each other as sistahs. The one you have ain’t fit for the title.

My sis went a step further, she brought my parents and my niece. It was NOT a quiet dinner. It was loud and uproarious, many laughs. I set a rule – no talking about illness. The only reference made to it was while driving past the hospital; I made an anti-hex sign and hissed at it on the way by.

Dinner out with family was exactly what I needed. Now I need to find a similar thing to do tomorrow, cause that was exactly what I was missing. Some good old fashioned FUN!

Luke is already panicking about his solo clinic visit tomorrow – “what level should my hemoglobin be at before transfusion”? Oh dear. I think this may be very good for him.
M

[Luke and Margaret]

Hi
I do sound horrible, don’t I? I’m not as desperate today as I am miffed. Anger is an important start to hauling myself out of my pit.

I am realizing something. I am working my buns off (figuratively, not literally, alas) to promote Luke’s well being. He is a passive recipient to all of it. He actually does not do anything to heal himself.

Today I decided to just let him be and see what happened. He lay on the couch. All day. I provided inspirational literature and a visualization tape. Wasn’t used. He talked about going outside, I suggested a shower would be a good start. The shower never happened. *sigh*

Normally I would drag him off the couch and get him moving. It is time for me to stop doing so much for him, and wait to see if he does things for himself. I am not sure how long I can keep this up without guilt and caving in, but something different needs to happen.

My sister, bless her heart, will be here any second to take me out to dinner. I plan to take my time about it and enjoy to the fullest.

You’re right, when the CFS attacks we are completely down and out. I’m racked with pain right now, and completely exhausted. So much of the battle is mental, isn’t it? I hope yours gets better really soon. I’m thinking mine needs positive contact, and some good vitamins. I’m working on both!

Talk to you soon,
Margaret

[Luke and Margaret]

Here is a study result that deals with risks of melatonin in tumour excerbation. I feel better now.

http://www.findarticles.com/p/articles/mi_m0FDN/is_6_6/ai_81761485
M

[Luke and Margaret]

Hi
The Canadian connection doesn’t work in our case either. It takes a week; the results come from our lab at our community hospital. It sounds like the long waits happen when the tests are being sent to an outside lab for processing.
Margaret

[Luke and Margaret]

Hi Esme
Each thing the naturopath prescribed was supported by some kind of research finding. She provided us with a full work up on the function of each.

I know what you mean about the melatonin, but there is a reason for it. Luke is very much in the grips of cachexia, or the wasting away of muscle tissue. He looks God awful. It is progressive, and once it starts it keeps itself going, apparently. Cachexia is associated with earlier death in cancer patients. The melatonin is to try and halt the progression.

What I’m learning about all of this is that there is nothing simple about it. Each person needs to have a protocol designed especially for their circumstances. What would be contraindicated for one is critical for another.

I’ve been reading the journal literature on cachexia, and frankly it is scaring the heebee jeebies out of me. Its awful watching someone waste away, but in this case it is even worse knowing why. I’m having one of those “overwhelmed” moments where you realize that your husband is extremely sick, and you can’t possibly learn enough to fight the battle on your own knowledge. I have to trust that these people know what they are doing.

I think about you guys all the time too. How is Hans holding up? Its a terrible disease, isn’t it? Some days I think my whole being is wasting away, just like Luke’s muscle tissue. I really do need a vacation!
M

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