My Sister and The New World of Cancer....Advice Needed

This is my sister, Paula. My sister and my best friend. Here, she is dancing with a period photo from the 30s of the great German Expressionist, Mary Wigman, founder of our branch of modern dance.

About a month ago, Paula was diagnosed with cancer when, while at a doctor’s appointment, her femur just snapped. I first wrote about it in a beautiful post by @John_M2 called “The Bravery of Children, The Shame of Adults.”

So. An update: It is indeed Stage IV lung cancer. They did an almost magical job of repairing her leg–not only inserting a rod, but rebuilding bone from the fragments that occurred when it snapped due to brittleness. She has ongoing radiation on the leg and begins chemotherapy on 12/14. She hopes to go home about 12/8 when she can finally put weight on it and learn to use a walker.

Chemo will cycle through several times and end on 2-22-16. At that point, they will do an assessment. If we are some of the lucky few she will have a year or a little more from that point.

My brother got there from CA right away and took care of a lot bureaucratic stuff to get her set up in a rehab center and for Medicaid to kick in. I will be going to Minneapolis from Portland for two weeks beginning 12/4—on Amtrak, thankfully, in a cozy room where I will be well cared for going and coming home.

One of the ways I cope is to channel my Swedish Mom by getting pragmatic and gathering information. I have several questions for this specific phase ( I have served on several hospice teams, including my mother’s, and we aren’t there yet).

Her partner of decades is not getting good info about how to stimulate her appetite–remember it is not chemo yet–and feels she is losing too much weight for so early in the process. Any ideas?—oh and she is not diabetic–some arthritis, though not as bad as mine.

Although I will be there for only the first chemo session, I would like to bring or ship things to support her through chemo–apparently the drug combo is not as harsh as some and post treatment nausea is briefer. Can one read, watch a DVD, listen to music, TV? Will she be cold–would a soft Pashmina shawl be a comfort? I would be delighted to read to her if it is appropriate–my whole family are (is?) readers. We are big huggers–will she hurt all over, though?

I realize every case, every person will react differently to these treatments, but there is no big history of cancer in our gene pool–on either side—so we are still quite stunned. I got the diabetic gene from our Dad. My brother has a weird tendon deformity in his hands that has needed surgical correction every decade or so—it is common to those of Nordic descent. But there is only one case of spleen cancer about 4 generations back. Any advice is most welcome, my dear community, my original online home.

Here is Paula in about 1977. We were all together in Portland from all over and everybody was broke. Her partner was a composer. For gifts that year they wrote music and choreographed and performed a special short solo for each family member. This was mine, called “Approach”…

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She will possibly not feel like eating, but she needs to eat a good mixed diet, including lots of ‘traffic light’ vegetables (red, yellow and green). Think up tasty and easy ways for her to eat well. Wishing you all the best, Maureen

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I’m so sorry about your sister’s cancer diagnosis. I found these links which may help figure out what she can eat and one about trials for cancer patients- the new treatments seem to be immunotherapy and figuring out which chemo treatment will work best for each patient’s tumor. Sending you hugs.

http://www.chemocomfort.org/index.html

http://www.dana-farber.org/Health-Library/Daily-Menu-for-a-Person-Undergoing-Chemotherapy.aspx

http://chemocare.com/chemotherapy/health-wellness/default.aspx

http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20047536

http://www.healthline.com/health/cancer/trials-for-new-teatments-reach-few-patients

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Hi Judith, sorry to hear about your sister’s diagnosis. I’m a cancer survivor, and completed 6 months of chemo 2 years ago. Its different for everyone, but everything you mentioned (books, dvd, music, etc) are all great ideas. I had a DVD player, and one time watched home movies my parents took while growing up, which we had converted to DVD. Other times I preferred doing ‘thinking’ tasks, such as puzzle games or apps on tablet.
For my treatments, it was usually in a small private room, but when there were many patients being treated at the same time, there was an open area with only curtains separating us, and less space for friends and family (and not too quiet !). On those visits, having headsets was helpful ! There was also a TV in every room, with limited channels.

My first treatment was the scariest, not knowing what to expect. The nurses are in and out constantly, and more frequently the first time. I received benedryl (infused) and fluids at the start of each treatment. The first treatment, we learned the dose of benedryl was TOO MUCH, and I had symptoms similar to restless legs. After that they used only 1/2 the dose.
They always provided heated blankets, and I always requested extra pillows to get more comfortable in the recliner chair.

I discovered a support website called inspire . com, which has many different sub groups. I confirmed these is one for Lung Cancer, you may want to check out. I learned a lot from the group I joined, and met local folks at the same time to meet in person. Going to in-person support groups was important for me, but not always helpful for everyone.

Overall, I felt well between the weekly treatments, and was able to go back to work part time after the first few weeks.

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i love the shapes in the photo of your sister. my mom had some kind of steroid to increase appetite which sent her blood sugar sky high. at least that is one less thing to worry about in your sister’s case. my mom got chemo in a room full of recliners and iv tubes with no curtains separating anyone. she always came in with a smile on her face greeting everyone in the room. it would be too noisy for me to read in that situation unless i had on headphones. one thing my mom said was that she appreciated the doctor that was very upbeat naturally. it can be hard to do with a loved one with cancer, but the more humor/energy/good vibes you can sincerely bring the better. that’s why i love being around children- i just catch their spirit when i’m around them. as your sister’s time comes closer, i hope you will witness her making contact with people who have already passed on. that seems to be a common experience that i hope i have when my time comes.

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@Trudy1 was just talking about soups—maybe vegies in a broth? I’ll have to see what she favor–like I love sweet red bell peppers and eat them everyday. Or maybe chopped fine and mixed with her favorite dressing or mayo. Thanks!

Oh @meee—this is so very helpful. I have been feeling overwhelmed and just sort of went blank as to where to even start googling. Perfect. I’m going to take my time working through the links–and one thing will inevitably lead to another—which is often my favorite aspect of research!..Thank you!

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I wish I knew what to tell you, Judith. I don’t, though. The best advice I can come up with is for her to find a cancer support group-- that advice is based on my own experience here after first joining tud-- when I all of a sudden met countless people dealing with the situation that prior seemed so completely insurmountable to me… All of a sudden thousands of people who were dealing with it appeared out of nowhere. Some were on the same page as me, some were funny, some were cool, some were wise— all told, I found what I needed in the variety of personalities I “met” online here. And I suspect the same phenomenon probably exists for other conditions, even much more serious ones like your sister deals with now. Btw she is gorgeous. Sam

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Oh Judith, I am so sorry to hear this news. Like @Sam19, I have no advice to give, just want you to know you and your sister are in my thoughts.

To everyone who has posted here … Wow! Thank you for reaffirming that TuD is a wonderful place to find support.

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I’m so sorry about your sister’s diagnosis. My father died from pancreatic cancer about 40 years ago and he lost a great deal of weight even though he didn’t go through chemo. Sometimes it’s just a way of letting go.

Be well. Love,

Maurie

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Oh yes, @Sam19…I agree with you, but guess who will be searching for that–me. My sister uses a computer only at the sweet little local library 3 blocks from her apartment and only to and from work if she has time to stop off there.

I feel the same way about TuD as you do, though, and so this is where I need to start–with everyone that is helping me now and in the months to come. I am, however following every link and devouring every scrap of info I can. I feel like there is a lot I won’t grasp until I am there next month, able to hug her and her partner and my niece and Interrogate her doctors—she is my little sister, after all, and in this instance, I will waterboard them if I don’t like their perspective or expertise—hehe…Blessings…Thanks for being there…Judith

Yes, @still_young_at_heart, Maurie…That makes sense to me. And it is a beautifully poetic and tender expression of this time in a life waning. I remember when I was caring for my mom in her last few months and the weight loss was very shocking at first, Gradually, as I was with her more, it began to feel more organic to the process. I hope to understand this better when I see her for the first time next month…Thank you for your empathy…It means a lot to me

…Judith

Both of you were dancers? That’s fantastic. I don’t have any advice but I’m sure you just being there is going to be great for her. In France they say “bon courage.” It took me years to figure out what they really meant by that but I like to think it means, “give it your best. you’ll do fine”:wink:

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Sorry to hear about your sister. The wonderful family support she has will surely go a long way.

Here are some more links you may wish to review on dietary approach that may help the conventional treatment / prolong life:-

These are two trials on ketogenic diet as part of lung cancer treatment - these may raise a new approach. And if they are doing such studies, it means they think the approach has merit:-


http://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=709592&version=healthprofessional

there are other nutritional approaches such as Gerson Therapy as well. The Gerson Therapy is a natural treatment for degenerative diseases that uses an organic, plant-based diet, raw juices, coffee enemas and supplements.

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Please do not do Gerson Therapy. It kills patients, it killed my niece and a friend. It is also supposed to cure diabetes!
Hug your sister, try to get her to eat an all round nutritious diet including all food types, and just being there will be a tonic in itself.
Hugs, Maureen

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@Judith_in_Portland, I’m so sorry to hear about your sister. I just went through things with my father in-law and I understand. I’ll pray that her treatment goes well. But I’ll also pray that she can have a quality of life. After all that is really what we care about. And if there are any words of wisdom that I can give you is to help your sister get that quality of life. To help her do, see and achieve things that bring her joy and give her good days and make her smile.

As to the food issue, that can be complicated. Both chemo and aging can impact eating. Chemo can cause you to lose taste or have distorted taste making food unpalatable. Both chemo and again can impact hunger signals, you can just not feel hungry. Certainly as a backup you can use a regular cycle of things like Boost, but I am also a big fan just figuring it out. Just like we do with eat to your meter. Get a food diary and just record the things that are good and the things that are bad. And figure out the things that you can eat with gusto and the things that you eat just a bite of. And then you can tune your diet to improve eating. Sometimes it is just a matter of finding the things that you can add to food to make it palatable, whether it be barbeque sauce or soy sauce.

All my best.

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@Brian_BSC…Thanks mucho----the food diary is a great idea. Funny how we can get tunnel vision–I have an extensive one from early days of figuring out The D and what I could eat, one that I still occasionally reference when things get whacky–but I hadn’t thought of it for this moment in time…

I totally agree with you on quality of life and I’m pretty sure as we move through this, that it will be me who has to advocate for Paula with her daughter and our brother on behalf of her wishes…I don’t think she will want to leave her family in Mpls to come to Oregon for our Death with Dignity program, but I have done the research just in case.

And yes, I love the idea of experimenting with strong spices or sauces as tastes change. My sweetie will have some great ideas on that one…I saw your post about holiday plans—wishing you lots of hugs from family and friends!

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Wonderful thought, @Mari5…I have a tin ear for languages, but I’m going to try for that one and laugh at myself as I attempt to say it to myself—A laugh I will definitely need! It’s already becoming light relief between my husband and myself as I fret about being physically able to be useful…Thanks!..Wishing you all the best, as ever…

Thank you @JustLookin for thinking of me. I will check out the links. More info is always better than les in my book!..Blessings

Judith - I don’t have any pragmatic advice to offer. I think your presence will the most valuable gift you can give your sister. I would concentrate on being in the moment as I think people faced with such serious diagnoses more easily focus on now than before the diagnosis. Good luck with your travel. My thoughts are with you!

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