Cancer Support and Caregivers Who Are Trail Blazers!

[DapperButch]

Originally Posted by OS Butch

Good morning. I just had the scare of my life and thought I would share it here. Sorry for the long ramble.


Since the age of 40, I have gone every year for a mammogram. It had become routine, something I just did.


10 years ago, my oldest sister was diagnosed with breast cancer; she did the chemo and mastectomy and is a 10 year survivor and going strong.


Last year my youngest sister was diagnosed with breast cancer and is doing well.



Having done this 13 times and having some not so very sensitive technicians, last year I said to the tech “Good morning, are you having a good day?” She looked at me a bit puzzled and said yes. I said “Great, because the last thing I want is someone squishing my boob that is having a bad day!” She laughed and although uncomfortable, it went well.


Last week I went for my routine mammogram. I had the same conversion with the tech and again, it went well. My daughter had come by Monday to pick up her mail and it was a good day. Later that evening, I got a call from her telling me she got my letter from the radiologist. As she read it I stopped hearing a word she was saying after I heard “requiring more testing.” I cried myself to sleep that night.


Tuesday, yes, Valentine’s day, I called my doctor and instructed to call the radiologist for another appointment, I shouldn’t need another prescription. I called the center and was told the next date would be Feb 29…..That was 15 days away! I said to the lady, I have had 2 sisters with breast cancer and that seems too long can they call me if there is a cancellation and get in sooner? She said she is unable to do that, but she could transfer me to the local office and I could check with them.


She transferred me to the actual place I had my testing. I gave my name and other information. She said “Can you come in at 1pm today?” My heart just about stopped as I said yes. Even though I got an early time, the immediate response was of urgency it seemed and I was terrified.


I arrived early to the center, and waited to be called. I heard my name and through those doors I went. I had my little conversation with the tech and she laughed. She took 1 x-ray of my right breast and 3 of the left. She took me to a waiting room, still in the gown in case there needed to be more x-rays after the doctor read them. As I sat in the waiting room, there was a tv playing an infomercial on Tomosynthesis 3D imaging. After what seemed forever, the tech came and got me for another x-ray….omgoodness. I asked about the Tomo and she said that is what we are doing. She further explained that it is a new technology and insurance companies are not paying for it yet, but the Doctor here said to go ahead and do it.



Back to the room I went and waited. The tech finally came back and said I could get dressed and the doctor would be in to talk to me……..more waiting.


Finally he arrived and said that everything was fine and negative. Shadows of the 2d were not there on the 3d. A huge sigh of relief!


I suggest that if the new Tomosynthesis 3D imaging is available in your area, it is well worth the out of pocket expensive to alleviate false positive reading and going through what I experienced! Hopefully, the insurance companies will start covering this new machine…. it still squishes the boob, but it takes 52 shots in a pass so the doctor is able to see more!


OSB

OS,

Thank you for sharing your story with us. I am glad that it had a happy ending! I can see why you would have been so nervous wiht two sisters with breast cancer.

[OS Butch]

Originally Posted by DapperButch

OS,

Thank you for sharing your story with us. I am glad that it had a happy ending! I can see why you would have been so nervous wiht two sisters with breast cancer.

It definitely was a tough day. I immediately sent a text to sister number 3 to get hers scheduled along with our mom.....and pay the $50 to have the Tomo!

[pynkkameleon]

There really are no words to easy the pain, frustration and heartbreak you are going through right now. So from me you get a big (((((((((((JustJo and family))))))))) and a reminder to just keep reaching out for support to get you through this terrible time period. Despite what you say, in my own opinion, you ARE strong and amazing. If ever you need someone to talk to... vent, cry, laugh. you name it, I am here for you as well. A stranger I may be to you, but I think that's a formality that we all get to bypass when our lives are all mutually touched by Cancer.

Thinking of you

[pynkkameleon]

OSB,

That WAS quite the scare for you. I'm so happy to hear that it turned out to be negative. Obviously, because of your family history, you have to stay diligent about being checked, which it seems you are. So many people aren't and I know of many (Butches in particular) who don't even do self checks; let alone routine mammograms. Has your family had any of the genetic testing done? If you haven't, once again because of your sisters, you shouldn't have to jump through the typical bunch of hoops to have the testing done. It would at least give you some sort of idea of what your own risk is and that of your daughter as well.

I'm so happy to hear that your sisters are both doing well. I am sad though that your family has been so deeply impacted by this disease. If you haven't already, I think you should all go out and celebrate your negative tests!

Wishing you all well and thank you for sharing. Hearing the positive stories are nothing short of a gift for many of us.

Big hugs!

[pynkkameleon]

I'm just a posting fool this morning. This time I am asking for prayers, good vibes and positive thoughts for myself and my mother.

I'll start with Mom. She was dx last week with a very large abdominal aortic aneurysm. It's over 7 cm as of yesterday. Last week it was 6.3. She is scheduled for open repair surgery on the 29th.. Personally, I wish it were sooner but because she's a heavy smoker, they want her to have at least a week or two without a cigarette before they cut her open. At first she refused the surgery but once they told her it would be fatal if she doesn't have it, she changed her tune. She's only 61. Way too young to give up and wait for the inevitable to happen.

As for me. I had my gallbladder removed yesterday. No stones located but the lil bugger was adhered to my ovary and appendix. That explains much of my pain right there. I'm up and walking around today but it sure does feel like someone kicked me in the belly with a pair of steel toe boots. Ouch! On Tuesday, I go in for two spinal MRI's. My physician is concerned that I may have mets in my spine. I'm not overly stressed but of course I still have that little bit of nagging fear that goes along with every one of these tests we all get thrown at us. I was officially diagnosed with peripheral neuropathy in both of my feet this past Tuesday. Can't feel hot or cold in either one of them. It's in my hands too but not as bad as the feet; although there may be an indication that one hand may need surgery to repair the trigger finger that I have more recently developed. I also have achilles tendonitis that they believe is also related to the chemo. Next week I will be undergoing testing for Lupus, B12 deficiency, MS, diabetes and whatever else she comes up with.

I am happily soliciting and accepting any and all positive thoughts and healing energy that can be thrown our way with a great big thank in advance.

I sure do miss those days when life was boring and any chaos that occurred, I generally had control over. I don't care so much for this "new normal".

Many hugs to all!

[clay]

((((((((((((((((((((((((Vonni & Mom)))))))))))))))))) consider it done..you both are in my thoughts and prayers...sending white light and warm energies your way!! Keep those positive thoughts...know you are among lovng and kind people. Big hugs...Clay

[JustJo]

Sending you big hugs Vonni...for you and your Mom.

[pynkkameleon]

Thank you for the good thoughts! Mom's surgery is on Wednesday. She's scared but playing the "it's no big deal" card. I can relate. I've played that card too when I was half scared out of my wits. The aneurysm was even larger on last weeks scan (7cm) but the Doc feels confident that they can repair it and Mom really likes this doctor, which is always an added bonus.

I got the GB out and am healing just fine. Doctor couldn't couldn't find a thing wrong with it other than the fact it "stopped" working. Well that and that it was adhered to my appendix which was in turn adhered to an ovary. Go figure? Nothing surprises me anymore as far as this body is concerned. I had a couple of spinal MRI's earlier this week. I have to go back again for another next week to look at a 14mm lesion located on my T-Spine. Keeping all the parts crossed that it isn't "that" and is just a benign nuisance. In the meantime, I've decided not to think too much about it and spend the weekend watching movies, eating naughty food, laughing all I can and pretty much doing whatever I feel like rather than what I should be doing. We all need a break from time to time I think.

The board has been quiet. Hopefully that means everyone is doing well and getting ready to enjoy their own relaxed and stress free weekend. Thinking of you all and sending out big hugs!

[mustangjeano]

Originally Posted by Vonni

I'm just a posting fool this morning. This time I am asking for prayers, good vibes and positive thoughts for myself and my mother.

I'll start with Mom. She was dx last week with a very large abdominal aortic aneurysm. It's over 7 cm as of yesterday. Last week it was 6.3. She is scheduled for open repair surgery on the 29th.. Personally, I wish it were sooner but because she's a heavy smoker, they want her to have at least a week or two without a cigarette before they cut her open. At first she refused the surgery but once they told her it would be fatal if she doesn't have it, she changed her tune. She's only 61. Way too young to give up and wait for the inevitable to happen.

As for me. I had my gallbladder removed yesterday. No stones located but the lil bugger was adhered to my ovary and appendix. That explains much of my pain right there. I'm up and walking around today but it sure does feel like someone kicked me in the belly with a pair of steel toe boots. Ouch! On Tuesday, I go in for two spinal MRI's. My physician is concerned that I may have mets in my spine. I'm not overly stressed but of course I still have that little bit of nagging fear that goes along with every one of these tests we all get thrown at us. I was officially diagnosed with peripheral neuropathy in both of my feet this past Tuesday. Can't feel hot or cold in either one of them. It's in my hands too but not as bad as the feet; although there may be an indication that one hand may need surgery to repair the trigger finger that I have more recently developed. I also have achilles tendonitis that they believe is also related to the chemo. Next week I will be undergoing testing for Lupus, B12 deficiency, MS, diabetes and whatever else she comes up with.

I am happily soliciting and accepting any and all positive thoughts and healing energy that can be thrown our way with a great big thank in advance.

I sure do miss those days when life was boring and any chaos that occurred, I generally had control over. I don't care so much for this "new normal".

Many hugs to all!

Vonni, Sending healing energy and prayers to you and your Mom.

[JustJo]

Hello everyone,

Talked to mom yesterday. She's glad to be home, but finding herself exhausted and unable to do much of anything. She's still having trouble eating, as well as much nausea. They're increasing her TPN again....from 12 hours on/ 12 off to 16 on / 8 off. She says her weight is stable....but I have my doubts.

The lesions on her liver are progressing rapidly and the oncologist wants her to begin an entirely new kind of chemo with drugs she has never been on before. His summary was that her body might be able to tolerate it and, if it can, the chemo might put the liver lesions into remission.

That feels like a lot of "mights" to me, but there are no other alternatives. If this chemo doesn't work, or if she refuses it, then she has 4 to 8 months left. This is the first time they've given her a specific number. She has decided to try it in hopes that different drugs will be more tolerable, but isn't counting on it given her experience with chemo so far.

She talking to realtors about listing her house for sale, meeting with her executor, donating odds and ends, cleaning out drawers and closets, and basically getting things squared away.

I've reiterated my offer for her to come back here, whenever she wants and for as long as she wants, including to the end. I know it means a lot to her to have the offer, but I have the feeling she won't be taking me up on it. She doesn't want Rooster to see her at the end.

I keep reminding myself that she's lived longer than anyone expected several times....after all, the first time they told her she didn't have long was 42 years ago. She defied everyone's expectations then, and again 8 years ago, and again when she survived this latest surgery. Unfortunately 50+ years of Crohn's disease takes an incredible toll on the body.

[clay]

hugs Jo & Mom!!!

[DapperButch]

Hi, Jo. I have been wondering how things were going, so I am glad that you posted.

I am sorry that she is not doing especially well. But, I am glad that she had the opportunity to spend some time with you and Rooster before the end. No doubt she found it to be very special.

Take care and remember that I am around if you need support.

[JustJo]

Sooooo....life changes in an instant.

I got a call a couple days ago from a friend of my mother, saying mom was on her way to the hospital.

She was admitted and has been there a couple days....dehydrated, electrolytes all out of whack, and an unidentified mass in the digestive system that isn't allowing her to absorb anything (food or liquid) taken by mouth.

Right now she has a nose tube in to try to clear whatever blockage is there...they're doing every kind of test to identify what the heck is going on...and she sounds pretty much awful.

I had a long talk with Rooster, and we agreed that she needs to come back here once the hospital lets her go....pretty much whether she wants to or not.

She and I had that conversation this evening and she agrees. There is a part of her that still would like to be home at her own house for the summer....but I'm not sure about that.

Now we wait and see when they will let her go and consider her fit to travel.

[DapperButch]

Jo,

I'm sorry your mom isn't doing well. That nose tube is a bitch, but is necessary when you have an obstruction of any sort. Please know you are in my thoughts.

[mustangjeano]

Hi Jo
Thanks for keeping us updated. I wish there was something more I could do beyond sending prayers and energy to you and your Mom. Please write us when you can. Jean

[Heavenleahangel]

Just stopping by to share the news that I won't be taking another round of the chemo drugs! The doctors are pleased with the last rounds for now. My kidneys did not like filtering the drug I was on as it is. Thank you everyone who continues to send me good thoughts, prayers and healing light. It really means a lot to me and Jacob, too. He wants to see his "Mudda" feeling better so we can ride bikes. (Poor kid doesn't realize I havn't ridden a bike in years! My first attempt should land on youtube! I will let ya know!)

[DapperButch]

Originally Posted by Heavenleahangel

Just stopping by to share the news that I won't be taking another round of the chemo drugs! The doctors are pleased with the last rounds for now. My kidneys did not like filtering the drug I was on as it is. Thank you everyone who continues to send me good thoughts, prayers and healing light. It really means a lot to me and Jacob, too. He wants to see his "Mudda" feeling better so we can ride bikes. (Poor kid doesn't realize I havn't ridden a bike in years! My first attempt should land on youtube! I will let ya know!)

Hey, Great! This is fantastic! Congrats!!!!!

[clay]

Awesome news, my friend!!! Enjoy Jacob and the bike rides..and playing in the dirt!! Big hugs to you both. This is incredible news......Clay

[mustangjeano]

Originally Posted by Heavenleahangel

Just stopping by to share the news that I won't be taking another round of the chemo drugs! The doctors are pleased with the last rounds for now. My kidneys did not like filtering the drug I was on as it is. Thank you everyone who continues to send me good thoughts, prayers and healing light. It really means a lot to me and Jacob, too. He wants to see his "Mudda" feeling better so we can ride bikes. (Poor kid doesn't realize I havn't ridden a bike in years! My first attempt should land on youtube! I will let ya know!)

This is great news. Thanks for sharing with us. I know Jacob will enjoy having his Mom feeling better. Jean

[JustJo]

Hello all

Mom got a stomach tube put in yesterday. The plus side is that it will replace the PIC line that has given her such problems and make it easier to clear the recurring blockages that she's getting...the down side is, well, that it's a stomach tube....so one more port, one more (minor) surgery, and one more thing that is depressing the hell out of her.

They delayed the new chemo (for the liver lesions) until they deal with this complication...and no word yet on when that starts again, or if. She is feeling like the whole thing is hopeless, and all she wants is to go home again and get her affairs in order, ship things to my sister and me, sell her house....and then see what's next.

I keep reiterating my open invitation to come here for whatever period of time she wants, up to and including the end, but she has very mixed feelings. Honestly, she is more attached to her house and her land than she is to family....and would rather be there as long as she can even if it ends up shortening her life.

Her friends are struggling with this as much as I am....but I find myself getting so impatient and frustrated. One called me yesterday at 3 p.m. and talked for an hour and a half....all upset and sad and crying. She was offering help, but also obviously feeling the need to talk about and deal with her own sadness. Part of me understood and was there with her, and part of me was angry that she would do that in the middle of my work day, when I needed to be working, and then upset me so much in the process that I never did get back to it....and had to regroup myself so I could go be there for my son. Before I could even manage that, another called to basically do the same thing.

Honestly, part of me wants to just lash out and scream....I am struggling too. Not only with my mother, but with my finances (now with 2 mortgages and 1 income and all the credit obligations I ran up since we moved), with the house (where I have had to be a plumber myself twice....and now have to find about $200 to have the washing machine fixed), just to keep up with the housework, the animal care, the meals....all of the stuff needed in a house this large, which I never would have bought for just myself and my son. Diabetic fatigue hits about 4 p.m. and I feel like I could sleep for a year....but instead I have to keep going, and going, and going.

Yes, I know....I'm fortunate that I have a good job with people who are totally supportive of what I'm going through. I'm fortunate that I have a wonderful, happy, healthy, undamaged son....far more than one of my old friends can now say. I'm fortunate that my own health is stable because of my efforts (and sheer luck, I'm sure). I'm fortunate that I have people in my life who love me and care about me.

It could be worse. And I know I have some help on the way. But fuck....couldn't they work this out with each other up there? Do they all have to dump their stuff in my lap too?