Cancer Support and Caregivers Who Are Trail Blazers!

[Tommi]

Genesis, may all your needs be met, finding strenght, and rest as you carry this torch for yourMother.
May your mother be sent the miracles of healing and the speed and expertise of healthcare professionals that she needs.

Come to know that we journey a road together, and our love and prayers, light and energy can help the sick to heal.

[LeftWriteFemme]

I saw this in The Weekly Purge

I thought it might be of interest to readers and contributors on this thread.

Please meet Rose Perkins, CEO of Children’s Cancer Fund of America, her ex-husband James Reynolds, President of the Cancer Fund of America, and their son James Reynolds, Jr, CEO of The Breast Cancer Society. A family trio of hard working fundraisers helping fight cancer in America. Wrong. These three individuals use their foundations as fronts. The Cancer Fund of America pays it’s president over $230,000 a year and admits it spends less than 3% of all donations on cancer patients, mainly giving them moonpies and stuffed animals, and the remaining 80% goes to “fundraising". The Breast Cancer Society reported 13 million dollars in 2011 to the IRS, but also claimed that only 2.4% of those donations went to patients. It’s no better with Rose who reported 6 million in cash, but cannot show what that money went to pay for with patients.

[deb_U_taunt]

LeftWriteFemme,

Sad, but true. WAY too much money never gets to research or to help people in need of treatment.

http://en.wikipedia.org/wiki/Pink_Ribbons,_Inc.

Deb

[DapperButch]

Went to oncologist today. Blood work looks good, which is positive.

By now you all may know that I take little solace in things like blood work, however. Just like CAT scans. The shit has to be pretty out of control before it shows up on scans or blood work. However, it is still nice to have positive results, that is for sure.

Yes, I know, I am a Debbie Downer.

Last CAT scan was in January 2013, and now I am on the yearly rotation, so next scan won't be until January 2014.

[deb_U_taunt]

Hugs and congrats, Deb (not a downer lol)

Originally Posted by DapperButch

Went to oncologist today. Blood work looks good, which is positive.

By now you all may know that I take little solace in things like blood work, however. Just like CAT scans. The shit has to be pretty out of control before it shows up on scans or blood work. However, it is still nice to have positive results, that is for sure.

Yes, I know, I am a Debbie Downer.

Last CAT scan was in January 2013, and now I am on the yearly rotation, so next scan won't be until January 2014.

[Sparkle]

Hi Everyone, and thanks Dapper for pointing this thread out to me.

I'm caring for my best friend who has breast cancer.

She had her double mastectomy and reconstructive surgery yesterday. Everything went really well in the surgeries and her lymph nodes were clear. It was a really really long day. Her wife and I wept with relief when the oncologist surgeon called to say the nodes were clear and that her part of the surgery went beautifully. The tumor was contained and the tissue surrounding it looked very healthy.

The surgeons are a dream team, among the very best of their peers (in their specialities) at one of the best hospitals in Massachusetts. I'm grateful she has health insurance that is robust enough to allow her to go there.

It's all been such a roller coaster, I didn't anticipate that.

I'm exhausted, I feel like I could sleep for a week and we've not even begun the long at home recovery process or learned the pathology of the tumor and what that will mean for her post-surgical treatment options.

I can already see how hard it is going to be to balance caring for her and her family, and taking good care of myself at the same time. I'll have to work on figuring out how to do that. Luckily she has many family members and friends who love her and live near enough to help. I've set up a care calendar. I'm struggling to manage competing priorities right now though.

Thanks again to Dapper for directing me here, and to Tantalizing for reaching out to me and sharing your experiences.

[deb_U_taunt]

My best friend put her life on hold for me, too. The world needs more people like you. Love and hugs to you.

Lymph nodes clear is a great sign and with a double mastectomy, depending on staging it could mean no chemo and radiation. Breast cancer in early stages is very treatable. She will be in my thoughts and wish her and her family the best.

Originally Posted by Sparkle

Hi Everyone, and thanks Dapper for pointing this thread out to me.

I'm caring for my best friend who has breast cancer.

She had her double mastectomy and reconstructive surgery yesterday. Everything went really well in the surgeries and her lymph nodes were clear. It was a really really long day. Her wife and I wept with relief when the oncologist surgeon called to say the nodes were clear and that her part of the surgery went beautifully. The tumor was contained and the tissue surrounding it looked very healthy.

The surgeons are a dream team, among the very best of their peers (in their specialities) at one of the best hospitals in Massachusetts. I'm grateful she has health insurance that is robust enough to allow her to go there.

It's all been such a roller coaster, I didn't anticipate that.

I'm exhausted, I feel like I could sleep for a week and we've not even begun the long at home recovery process or learned the pathology of the tumor and what that will mean for her post-surgical treatment options.

I can already see how hard it is going to be to balance caring for her and her family, and taking good care of myself at the same time. I'll have to work on figuring out how to do that. Luckily she has many family members and friends who love her and live near enough to help. I've set up a care calendar. I'm struggling to manage competing priorities right now though.

Thanks again to Dapper for directing me here, and to Tantalizing for reaching out to me and sharing your experiences.

[DapperButch]

Debbie has it right, your friend seems to be in the best position hoped for (clear nodules/double mastectomy).

Glad to hear that your friend has more than just you (for your sake!). Tantalizing stayed home from work for a week or so with me, and then I think the poor girl was only back to work for a day or two before she had to come home to bring me back to the ER. Lovely second surgery. I was at mom's after they discharged me from that one.

Honestly, I really don't remember a lot of it, but Tantalizing was there every step of the way, just like she was with her mom a year later, as her caregiver for breast cancer. I am glad you and she got to talk, Sparkle.

It is good that you are thinking ahead to taking care of yourself and I love the idea of the care calender.

Make sure you come back and keep us updated!

[deb_U_taunt]

Please, send out energy to my friend Meredith. She was told today she is running out of outpatient options. This is her second stomach cancer fight and she isn't winning this time.

[DapperButch]

Originally Posted by deb_U_taunt

Please, send out energy to my friend Meredith. She was told today she is running out of outpatient options. This is her second stomach cancer fight and she isn't winning this time.

I'm sorry to hear about your friend, and will say a prayer for her.

I must ask did she adjust her eating style after the first cancer bout...more to whole food plant based diet...organic...vegetarian/veganish type food? Or did she eat the regular American diet that includes red meat, preservatives, white flour, sugar, etc?

[deb_U_taunt]

Originally Posted by DapperButch

I'm sorry to hear about your friend, and will say a prayer for her.

I must ask did she adjust her eating style after the first cancer bout...more to whole food plant based diet...organic...vegetarian/veganish type food? Or did she eat the regular American diet that includes red meat, preservatives, white flour, sugar, etc?

She didn't change her diet and still won't. The dr told her this week to eliminate gluten and I don't think she will. She has always gotten a lot of exercise and felt that was good enough.

[DapperButch]

Anybody ever think of asking their veterinarian to do a CAT scan on their pet just to check things out?

I'm a freak like that due to the knowledge that over 50% of dogs over the age of 10 die from cancer. They have to be bad off though before there is any way to know they have it, so that is why a scan makes sense.

The problem with doing the scan though, is that every CAT scan we do is exposes us to radiation, which actually increases the growth of any existing cancer cells.

My Vet would probably tell me I am being a nut job. That happens a lot when I talk to my Vet.

I dunno, I think the next time they have his little butt knocked out for a teeth cleaning (which he is well overdue for), they should do a quick scan.

[mustangjeano]

Originally Posted by DapperButch

Anybody ever think of asking their veterinarian to do a CAT scan on their pet just to check things out?

I'm a freak like that due to the knowledge that over 50% of dogs over the age of 10 die from cancer. They have to be bad off though before there is any way to know they have it, so that is why a scan makes sense.

The problem with doing the scan though, is that every CAT scan we do is exposes us to radiation, which actually increases the growth of any existing cancer cells.

My Vet would probably tell me I am being a nut job. That happens a lot when I talk to my Vet.

I dunno, I think the next time they have his little butt knocked out for a teeth cleaning (which he is well overdue for), they should do a quick scan.

Hi Dapper, Would an ultra sound be helpful in spotting potential doggie tumors without the radiation?
Jean, who has had so many cat scans that he glows in the dark.

[DapperButch]

Originally Posted by mustangjeano

Hi Dapper, Would an ultra sound be helpful in spotting potential doggie tumors without the radiation?
Jean, who has had so many cat scans that he glows in the dark.

Holy crap. I didn't think of that! Thanks, Jean!

http://pmcofedmond.com/edmond-veteri...mond-oklahoma/

"Radiography allows us to visualize bone, cartilage, foreign objects, and some kinds of tumors. Ultrasound is more useful in seeing inside of the organs and detecting soft tissue pathology such as tumors, liver and gall bladder disease, kidney disease, cancer and other degenerative disease of the organs."

Looks as though this is a good idea.

Sometimes I wonder if my Vet is going to take my dog and put him into foster care I am such a nut about him. I remember the time I made her do an x-ray for a toothpick he swallowed even though waiting and seeing was a fine idea (this was before my cancer and prior to learning I should avoid x-rays when possible), and the other time that I wanted to have such a long discussion about an acceptable bone for my dog that she said, " sometimes you should just let your dog be a dog. So what happens if his tooth happens to chip when eating too hard of a bone? My dog has a small broken piece off of a tooth or two. Let your dog enjoy life".

BUT, I am still going to ask! He just turned 8 years old.

[deb_U_taunt]

You are not alone in this lol I have a dog and about the only time she is alone is when I go grocery shopping. She is 11 and its scares me to death she is starting to get older. AND she has better health insurance than I do.

Originally Posted by DapperButch

Holy crap. I didn't think of that! Thanks, Jean!

http://pmcofedmond.com/edmond-veteri...mond-oklahoma/

"Radiography allows us to visualize bone, cartilage, foreign objects, and some kinds of tumors. Ultrasound is more useful in seeing inside of the organs and detecting soft tissue pathology such as tumors, liver and gall bladder disease, kidney disease, cancer and other degenerative disease of the organs."

Looks as though this is a good idea.

Sometimes I wonder if my Vet is going to take my dog and put him into foster care I am such a nut about him. I remember the time I made her do an x-ray for a toothpick he swallowed even though waiting and seeing was a fine idea (this was before my cancer and prior to learning I should avoid x-rays when possible), and the other time that I wanted to have such a long discussion about an acceptable bone for my dog that she said, " sometimes you should just let your dog be a dog. So what happens if his tooth happens to chip when eating too hard of a bone? My dog has a small broken piece off of a tooth or two. Let your dog enjoy life".

BUT, I am still going to ask! He just turned 8 years old.

[DapperButch]

Originally Posted by deb_U_taunt

You are not alone in this lol I have a dog and about the only time she is alone is when I go grocery shopping. She is 11 and its scares me to death she is starting to get older. AND she has better health insurance than I do.

Well, my dog is a Jack Russell, so he is quite annoying. He is up my ass 24/7. Subsequently, from time to time I leave his butt and have no problem with it. I do feel guilty when I am at the beach because I can be at the beach all day and then out to dinner, etc. at night. Therefore, I will sometimes give him to my mom during those times. He also gets these wicked allergies at the beach because my R/V there is among trees, so he gets scratch crazy. I don't want him miserable and I don't want to put him on any medicine.

He loves it at my mom's because he has a huge yard to play in, lots of bunnies to chase and poop to roll in (much to my mother's chagrin), she feeds him snacks SHE purchases and passes over the healthy ones I give her to give him, and she always has new toys for him.

So it is a win-win! After about 3-4 nights he starts to get sad mom says and just lays around lethargic. I'm usually missing the mutt by then, too!

Insurance? I have chosen to take the risk. Honestly, my mother (who loves the dog, see above), is my insurance policy if he gets sick.

[deb_U_taunt]

A friend went into hospice a couple days ago and is telling people goodbye.
Another friend has brain mets and was told she has 6 months a couple months ago.

I am feeling a bit of survivor's guilt today.

[deb_U_taunt]

My mom sits for mine, too. Mine gets separation anxiety if I am gone grocery shopping for an hour. Yep, we are pretty much joined at the hip. lol

Originally Posted by DapperButch

Well, my dog is a Jack Russell, so he is quite annoying. He is up my ass 24/7. Subsequently, from time to time I leave his butt and have no problem with it. I do feel guilty when I am at the beach because I can be at the beach all day and then out to dinner, etc. at night. Therefore, I will sometimes give him to my mom during those times. He also gets these wicked allergies at the beach because my R/V there is among trees, so he gets scratch crazy. I don't want him miserable and I don't want to put him on any medicine.

He loves it at my mom's because he has a huge yard to play in, lots of bunnies to chase and poop to roll in (much to my mother's chagrin), she feeds him snacks SHE purchases and passes over the healthy ones I give her to give him, and she always has new toys for him.

So it is a win-win! After about 3-4 nights he starts to get sad mom says and just lays around lethargic. I'm usually missing the mutt by then, too!

Insurance? I have chosen to take the risk. Honestly, my mother (who loves the dog, see above), is my insurance policy if he gets sick.

[deb_U_taunt]

I am loving this mastectomy cover up!

[Sparkle]

Hi Everyone,

It's been three weeks since my best friend had her double mastectomy and simultaneous reconstructive surgery and she's started to turn a corner in her recovery, at last.

It's been a crazy, tumultuous, exhausting ride. I feel really grateful that I am one of a team of people who love her and have cared for her the past three weeks. It's been a full-time job, I don't know how anyone can do it round the clock.

Being present while she was in such incredible pain was the hardest part.

Since the last of the four drains came out the pain has been easier to manage with medication. She's weaning off pain medication now.

When I first saw her incisions I was shocked, they looked so enormous across the middle of both breasts, one side to the other, and so swollen and angry and Frankenstein like. It was alarming but I had to keep that to myself because she was feeling very distraught both with the pain and with how she looked.

But now, at the three week point, I am simply amazed at how her incisions are healing. It's like MAGIC! Her plastic surgeon is the head of plastics at Mass General in Boston, so we knew he had to be *good* but I am actually gobsmacked at how good he is. She is going to have very minimal/barely perceivable scars, the incisions are healing in such a way that they look like french seams, perfectly joined and turned in to one another and smooth; almost seamless.

They were not able to save her nipples and that's been a bit of a struggle for her. If she wants nipples (or the look of nipples) the plastic surgeon will discuss options when they next visit. As I understand it they now use a few techniques to recreate nipples including tattooing. I've suggested she tattoo leopard print pasties in place of nipples.

The pathology has come back on her tumor, it's grade II and estrogen receptor positive. A bit bigger than they had originally thought from the MRI, which may mean that it grew quickly.

Her lymph nodes and the tissue in her other breast were all clear and there were clear margins around the tumor. All very good news. She will see her oncologist next week to discuss various options for post surgical treatment. It's quite likely they will suggest a short course of chemo or anti-estrogen therapy.

She's probably also going to need to schedule a hysterectomy sometime soon. the anti-estrogen drugs apparently increase the risk of uterine cancer. And my BFF's mother has already survived cancer in 9 different locations (mainly reproductive organs).

So, this looks to be the beginning of a longer process than we originally thought, and that was very discouraging and disheartening for her when she found out. But I think that now that the pain has lifted a bit - everything else is feeling a little less overwhelming.

I was feeling quite overwhelmed with everything myself until this weekend when I was able to catch up on my sleep and relax at home a bit. But wow! It's been challenging, to say the least. Trying to be responsive to her needs, being helpful and supportive to her wife and children and acting as crowd control to a cadre of (well meaning) friends - while working two jobs - was crazy making. I think I spent week two feeling quite frazzled and cranky and perpetually exhausted.

I have incredible respect and admiration for all of you carers!

Wishing you all good health!