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!

JustJo
 

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

Looking for some positive happy thoughts...
 

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!

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

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

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.

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.

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.

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.

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

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

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

Hello all :rrose:

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?

Ugh...so many things have been discussed that she and I BOTH got this wrong. It is a stomach tube, but it is located between the stomach and what's left of the small intestine, and is to control outgoing rather than incoming.

Evidently it will help them clear blockages, and also allow her to cirucumvent the intestine entirely (at will) when she is feeling discomfort.

So...now she is hooked up to 3 bags....TPN in through the PIC line, the original ostomy bag and now the new one....that I don't even know what to call.

Her TPN is increased to about 20 hours a day, and she will never be off of it.

She is feeling like a monster....with every step of food intake and digestion being controlled by valves and clamps and bags and needles.

On the plus side, this blockage was cleared and she is no longer having any pain.

The chemo will start later this week...since the latest scan shows that the liver lesions are now 11 mm and 8 mm, respectively....when they were so small they didn't even show on a scan a few months ago.

Oh, Jo this so sucks. I feel so terrible for her.

It is this kind of stuff that worries me (about me). Yes, the CAT scan I had a month ago said there were no tumors. This was really meaningless to me due to the above. That is what my eating (most often successfully), vegan is all about. The hope is that eating in this way (plus doing some other things), will make my body less hospitable to cancer. The hope is that those small tumors don't grow. I am aware, however, that no matter what I do, it could still happen. Additionally, I am aware that there are people who have undetectable tumors that never grow no matter how they eat or what their lifestyle.

You remain in my thoughts, Jo.

Thank you Dapper. :rrose:

I completely hear what you're saying...and it's scary as hell.

The other part of the story though is that my mother has been a Crohn's patient for 50 years....lived on butter, bacon, and....when she was younger....Coke, donuts and chips.

She became nutrition conscious very late in life....and never took good, regular care of her Crohn's disease....starting and stopping medications randomly, skipping checkups and tests, even taking veternarian grade prednisone at one point for over a year because she was "sick of doctors."

As harsh as it sounds, I think she didn't help herself any. By contrast, you're taking the right steps...eating right, supplements, taking care of your health in general...and trust that will make a difference.

Hugs,
Jo

Thanks for saying this, Jo. Recently, I have been struggling with seeing the usefulness of not eating the food (read: meat, cheese), that I love. You sharing the part of the story about your mom's tumors originally not showing up, only to show up later reminds me as to why I am doing this. Thank you. (f)

(As an aside, I am aware that not everyone agrees with my belief that eating vegan+fish, helps fight/keep away cancer. No offense/disrespect meant to those who sees things differently.).

Just a reminder: Please make sure that your younger family members are educated about gardasill, and the damage HPV can wreck--my niece, Meaganne, will be moving on from this world in the next 24-48 hours due to cervical cancer from HPV, she is 23 years old.


JustJo: I think the term you were looking for is gastric drain--it is frequently placed in the jejunum, but is sometimes placed in the stomach or duodenum. Placement in the areas below the stomach allow for drainage of bile salts, which can ease nausea, vomiting, and irritation.

UPDATE
 

Thank you....gardasill is not administered to women over 30, so it's important to get the series prior to that...forgot to mention it earlier.

I know you all have to be so sick of hearing from me :(

Yesterday evening I had a long talk with my mother, who was having a total meltdown. It was incredibly stressful trying to be there for her as she was raging and crying and scared and all of the other stuff that goes along with knowing your days are numbered and that you're in pain.

Anyway....trying to figure out next steps...and spoke to the doctor this morning. She has 2 months "if we're lucky." She cannot go home, period. She cannot eat food, period. She will have horrible pain from here on out and they will do their best to help control it, period.

Fuck.

They believe they can get her off the IV pain meds, which she is hitting every 15 minutes religiously, and onto oral and patches for pain. They believe they can get her strong enough to fly down to me.

And then it's on me, period.

I have a call in to hospice.

This also means I get to have my crazy, fucked up narcissist of a sister in my house so that she can say her "devoted daughter and where's my share of the loot?" goodbyes.

I am angry, upset and just feel sick myself.

So...welcome to 50. First task of the next half century....help your momma die.

Fuck.

Jo, my heart goes out to you and your Mom. I can certainly understand how she wants to stay in her home and not be dependant on anyone else but that just isn't an option at this point. I salute you for being willing to be there for her at this most difficult time and have her at home with you. This will probably be the toughest thing you have ever done and yet I bet that you will be glad that you were there for her. Keeping you all in my thoughts and prayers. Jean

I'm very, very sorry, my friend. Know I will be thinking of you and I am around if you want to talk.

Peace to you Jo
 

Hey Jo,

Hope you are okay today. This is the crises we never see coming, and it drags, yet drowns out all sound and reality with the rush of knowing the outcome.

This time next year, the spring flowers will start to bloom , the color will come back into your landscape, and your Mom will not be hurting and suffering.

and ...as for your sister, the drama of her trauama will be different next year, and you can send her Birthday and Holiday cards, and not hear the Me Me Me what about wonderful me.

Well, if you want to get away to Disneyland , just call. :) :hangloose:

Keep us posted Jo

JustJo,
This is tough. I had to do that with my mother when I was 21. I went home to take care of some of her needs and missed her passing. She had wanted someone to be there and I wasn't. I carried that guilt for a long time.

Be with your momma while you can. Be strong for her.

When it is done, you can have your own meltdown.

Know that we will be here for you through it all.

Our prayers are with you.

(((((Jo))))) Honey, i am so sorry to read this...yes, i've been there too and i wish i had some magic words to make this easier for you...

my Mom died from Pancreatic Cancer in 2007, She never talked with me about what she was feeling...this haunted me earlier this year...i think she was trying to avoid a similar meltdown to the one your mom had. Still not knowing how she was feeling bothered me. No one understands how this feels until they've walked this painful and frightening path...

There was nothing that could be done for Mom and i felt so helpless. She made me promise i'd help her die if she ever got to the point where she couldn't take it any more. Hospice was simply amazing for us and i hope they will be the same for your mom.

And NO i am certainly NOT sick of hearing you post about your mom...you have to talk about this...and i'm here if you need a shoulder or an ear...

Like Clay said, we're holding you close...sending much love, light, energy and prayers to you, your mom, your family and Snack...

Thank you so much everyone. :rrose:

Mom will not be able to go home with hospice care after all. The hospital room has been blocked to all but family, her roommate has been moved, and my sister is spending the night in the other bed for tonight.

They have basically said their goodbyes....mom knows her affairs are all in order....and she is leaving us very soon.

I have believed for some weeks that she was holding on for two things....to have decisions resolved and confirmed about her things and her property....and to see my sister.

Both of those have been accomplished....and now we wait.

JustJo,

I am so glad you and Rooster have had quality time with your Mom in Florida. You worried so much about her, and I know this waiting is the hardest thing to go through.

We will be here and write when you can, as much as you can. You and yours are in our thoughts. :stillheart: