hey
 

That's great Debby! Hey look penguins!!!!! hahah or is that a dove , or wait no quail, hahah never mind.

It will be a party for sure. I haven't been able to drink a cup of coffee for months. lol

Were you told to not drink coffee during chemo? :confused:

It was adding to some side effects. lol It was not pretty.

Had my first Taxol today. I only have 3 more chemo treatments to go!!!

I am starting to loose my fingernails. Don't remember reading about this side effect. Gotta say, this one bothers me more then losing my hair.

Bride side: Taxol is supposed to be easier on the stomach, so maybe I can have a cup of coffee, again.

Okay, so a Taxol side effect is bone pain. It started Saturday night and by Monday, when I got to the Dr, the pain had gotten a good hold on me. I didn't get the pain under control until Tuesday. I am hoping like hell this isn't going to be the norm.
Bright side: The bone pain only lasted 5 days and this is all temporary.

Hey everybody :)

I hesitated to post in here because I don't have cancer, and I can't consider myself a caregiver since I'm 1300 miles away as my mother is going through this....but I do find myself dealing with bucket loads of the emotional crap...so thought I would anyway. Hope that's okay. :rrose:

I've posted parts of this in other places, but...the Readers Digest version...my mother has had Crohn's disease basically all of my life, and the first "she's going to die" scare came when I was 7. Obviously, she didn't die...and through a very many ups and downs and scares and hospitalizations and surgeries and such...she's still here as I approach the 50 year mark.

Last fall (almost a year ago now...wow) she started having pain, losing weight, lots of stuff that she's been through before and assumed it was the Crohn's. She put off going to the doctor and addressing it (as usual for her) and tried to tough it out. She did for months...but continued to lose weight.

When she came to see us in the spring she looked incredibly thin, felt horrible, couldn't eat, etc. She went home promising to go to the doctor, which she did. Many tests later....unsure what's going on...probably Crohn's...blah blah blah.

In late May a friend ran into her in the medical center hallway and basically said "screw your doctor, we're going to the ER." They did, and she was admitted from there.

Two weeks of hospitalization with IVs of potassium, antibiotics, transfusions, tube feeding, etc. to get her strong enough for surgery...we've been through this before about 6 or 7 years ago when she had the colostomy....then surgery.

She was in the hospital a week more, sent home...telling me she's fine.

Then, a panic phone call from my estranged sister followed (the next day) by a note in the mail (long, complicated story but that's my mother)....to tell me it's cancer and she's known since she was in the hospital and before the surgery.

No other information except that the oncologist says it's "pretty well advanced" and she has to have 6 months of chemo. She's doing that now, but she's also making plans like she's dying...and talks like this is the thing that's going to take her out.

I'm finding this incredibly hard for a whole variety of reasons that I can't even explain. She and I have had a very difficult relationship...she's a narcissist, and my childhood was full of the craziness that goes with that...and the damage that follows. As horrible as it sounds, part of me is hoping the chemo will cure her, and part of me is wishing it was just over with.

We talk a couple times a week. She's coming to visit, probably in October - her request for an extended one-on-one visit (traditionally she can tolerate a 3 day visit.....maybe 4). She's done her will. She wants me to accumulate all the funny pictures of her and my son (they've always been close) so she can make an album of just the two of them....for me to give him after she dies.

Her illness has also opened the door back up to communication with my sister....more difficult and painful even than communication with my mother. She is trying to pretend that we're loving sisters...and has the astounding ability to "forget" or whitewash the emotional and physical abuse she heaped on me for years...and what she did to my son (which ended contact between us).

I find myself crying at the drop of a hat...feeling emotional and exhausted and frustrated and angry and depressed and things I don't even have a word for....wanting closeness and support and then also wanting everyone to just leave me the hell alone. Meanwhile...life goes on, and I need to be an employee and a mother and a partner and make dinner and and and.....and function.

How do you all do it?

One foot in front of the other.

But, I know that you are coming from a different place from me.

It makes sense to me Jo that in the face of your mother's (possible) terminal illness, that a lot of things are going to come up for you. I think it happens to every person that is being faced with a significant loss.

Since your relationship is so complicated and there is so many left over feelings about the past, it makes it even more complicated, I think.

All of the "symptoms" you describe can really fall under "loss' when the death of a person you have a complicated relationship with ends. And I am not calling your mother "terminal" (did she tell you the 6 month thing, or the oncologist himself/herself?), but I wonder if being clear on her prognosis would help things a bit for you. Being in the gray area is hard.

The best suggestion I could give you is to consider counseling to help you move through all of this. I know that is a pat answer, but....

If you are open to that, look for a therapist who specializes in working with people/partners who have cancer. At the place where I received my chemo, they had two psychologists that I could have seen. Really though, any therapist who works with loss should have the skill set to help a person work through all their mixed feelings about someone who was not so kind to them, passing.

Also, most importantly, give yourself a break. Right now you may not be able to be the best employee, partner, mother. And that is ok. I suspect that you are a person who feels guilty if she can't be superwoman 24/7, but guess what, sometimes superwoman needs a rest.

Ask your partner to hang in there with you and be there when you need her, but back off when you need her to do that, too. Apologize to your kid if you have less patience than usual...and work..either talk with your boss, or fake it.

Good luck. You WILL get there.

And come in here and talk whenever you like...PLEASE!

Jo, you are in the right place.
 

There is no trick to doing it. Some days I can't do it. I have a friend staying with me for emotional support during chemo, but honestly over having her around all the time. Even with her being my bestie. She is getting on my nerves. I still do all the cooking and cleaning, since she doesn't do that for herself at home, so isn't doing it here. lol My partner left me the day after my third chemo treatment. I am exhausted and burned out.

My mother-in-law is a narcissist, too. And somehow has made this about her. Even sending out prayer requests on facebook and getting condolences sent her way. When I had surgery, she showed up and it stressed her out so much, she checked into the ER with chest pains. (they couldn't find a thing)

I have a sister who doesn't understand why I am choosing to do chemo and radiation and not just go vegan and the gym for treatment.

Sad thing is, the longer I am sick the less I see and hear from people. Then again I have a hard time concentrating enough to have a conversation. So I truly understand what you mean by wanting support and wanting to be left alone. AND crying at the drop of a hat.

I understand why your mom is getting affairs in order. I now have a will and insurance papers are all together in my safe. This is normal, whether you know you will survive or not. Everyone in my cancer support group has done the same thing. It is life changing in how you view things. Life becomes staying in the present and not looking at even next week most of the time. I know I will survive, but doesn't mean there isn't that bit of fear and doubt. Nothing is 100%. My survival rate is not 100%. At my stage it is 81%.

She might be talking about not surviving, but she is making plans to come see you. 'Pretty far advanced' is really vague. Will she share with you the stage and grade of her cancer?

Anyway you can take a break and just be for a weekend? Let your partner take you out for dinner and get a sitter?

Thank you Dapper and Debby :rrose:

It really does help to hear that some of this is normal...for me and for her.

Unfortunately she won't share any information about the stage of her cancer (claims that they didn't tell her...which is nonsense...and that she doesn't want to know...which sounds like her). With HIPAA they won't/can't tell me anything...at her request no one has anything beyond being an emergency contact.

One foot in front of the other is the theme (for both of us I think) at this point. My boss has been totally supportive (it helps that his mother has had 3 bouts with cancer)....which is a big help....although there are a lot of days when I find myself staring at the computer screen and totally unmotivated to do anything for work. Thank goodness I work from home so no one can see me. :)

I'm pretty sure that I'm driving Scoote completely nuts...because I really can't explain why one minute I'm fine and the next I'm truly not. Poor her. It has to be crazy-making.

Anyway...thank you to you both again. It really helps just to be able to talk/write about it.

The Dr told her stage and grade, she wasn't listening or like you have said about her, for drama's sake she isn't sharing. My mother-in-law would probably not share either, just in case her's wasn't as bad as the next person's. lol

My boss has been really supportive, too. His mom lost a kidney to cancer last year.

I work from home most of the time, too. Lots of days lately have been spent staring at the wall behind my laptop.

Yep, you are so damn normal.

PM me too if you ever need to talk or vent.

Hugs, Debby

Damn, you never know what life will throw your way.

The nurse was able to get a vein on the first try today. :)

Only 2 more chemo treatments left!!!!!!!!!

{{{{Jo}}}}} Cancer drains not only the person it's attacking, but everyone around it as well. Everything you are feeling, thinking, experiencing is totally normal. Even the icky family stuff. People resurface and make appearances in your life and think that it's ok to use the cancer as a bridge over troubled waters...and it really is up to you whether or not to insert parameters and boundaries or not. There are no rules when it comes to cancer. Just remember to take deep breaths and know that things won't always feel this heavy.

Very well said lovely Lady! (f)

Checkin' in with Jo.
 

Jo, how are you doing? How is your mom?

Hi Dapper, and thank you.

She's not doing well. Her weight is down to 101, and she's been feeling sick, exhausted and dizzy. Some of it was dehydration (a perennial problem after an iliostomy and colostomy....she has no colon left at all and that's where most fluid reabsorption happens). She went in and had IVs of fluids and that helped some but she still feels very rough. Walking up one flight of stairs to her bedroom leaves her out of breath...although she claims she can walk well enough that she refused when I said we'd meet her with a wheelchair at the airport (Orlando is big and there's lots of walking).

We're moving up the timeframe for her trip down here...so it'll be end of September when the kids here have a 4 day weekend, so Rooster can spend more time with her as well. She wants to go see Miami and Key West, although it will mostly be a driving tour I'm sure, peppered with restaurants and finding nice places to sit and visit rather than adventuring around.

Luckily her friends are being incredibly wonderful, and I owe all of them a huge debt....they're bringing her meals, mowing her lawn, doing her shopping, tidying up her house...whatever she needs.

She still hasn't told me stage, etc. and "doesn't want to know" herself...so I really don't feel like I can push it. She did tell me that the oncologist, when discussing the chemo, said that without it he'd give the cancer an 80-90% chance of recurring....so refusal wasn't really an option. That sounds like it was pretty bad to me. She hasn't said more about the "belly wash" procedure....so I'm not sure if they're planning that after she finishes the regular chemo or what. It's on my list to ask her...

We're doing the "one day at a time" thing in a big, big way around here. :rrose:

Hugs,
Jo

GRRRRRR
 

Someone I know or a friend of someone I know sent someone from their church to pray over me. This was completely without my consent. They gave them my address!!!!! Now I will have to fight to get rid of missionaries. Has to be someone from work. GRRRRRR They won't tell you who sent them either. So not right. I was polite to her, but damn unhappy with the person who violated my privacy.

Wow. That is quite terrible. I have never heard of this happening before.

I mean, who would be willing to do this most likely knowing the person they are coming to visit did not give their consent? How did you handle it?

I was nice enough to her, it wasn't her fault some unthinking person sent her over. I did make it clear I didn't want anyone else coming over. She offered help and I reminded her I wasn't a member of her church and unless something changed, they don't allow queers in their congregation. She make a quick retreat after that. lol.

Just got off the phone with my mother...they've added another drug to her chemo cocktail that is making her very sick...as in throwing up after every session. She continues to feel weak, dizzy and awful....the infusions help to keep her from being dehydrated, so they've upped her to 2 or 3 infusions a week.

We're coordinating now to get her infusions while she's here visiting. She also finally admitted that she'll need a wheelchair while she's here. I pushed a little by telling her that Rooster really wanted to push her...that helped, because she would do anything for him. (Thanks Dapper :rrose: )

Done more prying...as I do...and what she has is being called "metastatic colon cancer" even though it's in her small intestine (and she has no colon anymore). My research is showing average lifespan from diagnosis is 29 months, survival rate at 5 years is about 19%....naturally, with those tending to be the younger, stronger patients. It's something I'm working at getting my head wrapped around.

Her visit is moved up to the end of September, so she'll be here in a few weeks. I'm burning up my Hilton Hotel points for a couple free nights...one in Miami, one in Key Largo....not how I dreamed of using them, but hopefully a few more good memories for my son to put in his heart to keep after Granny is gone.

I can't shake the feeling that that's going to be soon.

My heart goes out to you and your family. Hope you have a wonderful visit and are able to create some wonderful memories and don't forget to take a lot of pictures.

HUGS and love to you and your's,

Debby

A bit over a week ago I went to see this guy in Chicago, Keith Block, M.D. He runs the Block Center for Integrative Cancer. His theory is how it is more than just chemo that helps fight this fight. It is the whole mind, body, spirit thing. Nutrition is huge. He wrote the book, "Life Over Cancer". http://www.blockmd.com/

I take the supplements they reccommend and eat the foods they reccommend. They achieve amazing results. One thing they do really well is help people be healthy enough to get through their chemo treatments. If your mother is able to focus on reading, she should check it out.

Anyway, natural stuff and supplements are part of his thinking and I know your mother is into that. I looked it up and for nausea he suggests "eating a small amount of grated or finely chopped fresh ginger (if your blood platelets are less than 60,000 cells per microliter, check with a medical professional first), or a teaspoon of gomasio (a seasoning made from crushed sesame seeds and salt), or try sucking on the pit of a umeboshi plum. Gomasio and umeboshi plums are available in the macrobiotic section of health food stores. Herbal teas (such as ginger, alfalfa, chamomile, fennel, and slippery elm), oranges, or tangerines may also help".

I know that you can also get ginger candies to suck on, as well. They had them at my chemo center. She could get some of those (sorry, don't remember the name of them, but I know you could order them off the internet) and suck on them during the infusions.

For me, it was all about the simple, red and white striped peppermint. That is what helped my nausea. Peppermint tea helped me too.

Hang tough. (f)

and more good memories for you too.

Wishing you the best on this journey Jo, while she is here and after...:praying:

I have chemo today and when I am done I will only have ONE treatment left.
Here's to the nurse finding a vein the first try today. :thumbsup:

Congratulations on being almost done....and hope it goes smoothly for you today. :rrose:

Hey everyone, I have a question...

My mother is getting chemo every two weeks, a treatment at the oncology center and then a pack that she wears for 48 hours that continues it.

They don't have to find a vein each time (like Debby....ouch!)....because she has a port in her chest that evidently goes to an artery or a major vein or something. I'm just wondering if anyone knows....is that normal? Does it mean anything? It just got me wondering...

Yes Jo, it is very common in chemotherapy patients. The port-a-cath is normal. Especially since your Mom has lost so much weight and not eating well. It's easier for routine treatment, and if there should be an emergency, they have direct access should the veins collapse.

Per Wikipedia
In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".
Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.
The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.

Should I feel insulted? Did you miss the "I had the exact same cancer/treatment as your mother" information somewhere? :blink:

Yes, that is normal.

The infusion is for around 4 hours and then you wear the pack for 48. When the pack becomes empty (there is a battery that starts beeping), you go back to the infusion place and they disconnect you (some insurances pay for a nurse to come to your house). As a side note, you don't have to run over to the facility the moment the beeper goes off. Just remove the battery and get over there when you can.

For me (and evidently a number of people), the exhaustion would set in immediately AFTER the pump stopped. Subsequently, since I worked full-time, I would have my infusion Wednesday morning, then have the pack from Wed-Fri. I would get it off on Friday (I would run over to the infusion place...across the street from my job... at lunch time), and then sleep all weekend. It worked out great. You should ask your mom her "tired time", so your vacation "events" can be scheduled around it.

Thank you all...and sorry Dapper...my brain has gone dead :|
After hearing from Entycing and Tommi I had one of those duh moments and smacked myself in the forehead...

She's being readmitted to the hospital...her friends have been calling me...I've been trying to reach my sister then realized she's at Burning Man (and therefore out of cell phone range) until the 5th or 6th...basically losing my mind.

I'm waiting to hear what her status is this evening...and trying to figure out if I need to get on a plane right now or what.

More than anything I wish I simply didn't have to deal with this...which then jumps up and smacks me as an incredibly selfish thing since she is dealing with much worse. Her friends are putting 2 and 2 together and realizing that she's told each of us one tiny bit of information here and there, claiming she doesn't know more, and keeping us in the dark about some things that she's told others. Right now, we're comparing notes...and the full story isn't looking good.

The oncologist's office weighed her in at 96 lbs this afternoon and doesn't know why she is having pain in her abdomen 2 months after her surgery. They did an x-ray that showed nothing...more tests to come.

Ok, so now I feel like an asshole for yelling at you. Sorry. :rrose:

Let me tell you the first thing that came into my head when I read your post.

2 weeks after my surgery I was readmitted to the hospital because I had a blockage (read: could not poop) due to adhesions. This excruciating pain just came from out of no where and I had just gone to the bathroom only a couple of hours earlier, so it really made no sense.

It is more common for the adhesions to develop a year after surgery; thus, the reason the fuckers in the ER didn't seem too concerned about the amount of pain I was in until they did a CAT scan.

Find out if your mother has gone to the bathroom.

I think we were typing at the same moments and you, my friend, are anything but an asshole. :rrose:

She has a colostomy and says things are working normally....but she's also barely eating and dehydrated....so I'm not sure.

I'm dialing the hospital (again) as I type to see if she's settled in there yet....ugh.

Maybe in the end this hospitalization will be a good thing. Maybe it will get her strength back up resulting in her chemo treatments taking less of a toll on her. Something like 1/3 of all chemo patients have to quit due to weight loss and other side effects.

Please let us know how things are going.

Nothing definitive....but I'm feeling somewhat relieved.

She's in the hospital, definitely there for at least a few days...getting IV fluids and back on the TPN so she's getting some nutrition. She sounds better..thanks to several IVs of fluid and some painkillers...but she also sounds far more relaxed to be back in the hospital.

They'll be doing some tests to determine what's causing the pain, but in the meantime they're most concerned about the dehydration and malnutrition. It looks like the TPN may become a longer term thing that will go home with her, and the oncologist said that he'll be ordering at-home care once she is released as well.

I haven't managed to talk to him yet and all the info is coming second hand through my mother and her friends....but it's an improvement to know that she's in good hands. :rrose:

It is normal. The reason I didn't get a port because of I won't be doing hormone treatments after chemo and they did't need as many blood draws. I can tell you I wish I got a port early on. (The nurse didn't get it first try today, but only ONE left!!!!!!!!!!)

Glad to hear she is being admitted, so they can keep a watch on her. They can rehydrate her fairly quick.

Ouch....I can only imagine how rough that is....the port does seem easier and makes a lot of sense. I'm so glad you have only one left!

Me too....her BP is back up to 113 over something....it was down to 90...and she sounds better. Her weight of 96 was fully dressed....can't even imagine that for a woman who has been slim her whole life at 145ish.

They've already gotten 2 quarts or liters (whichever it is they use) of fluid into her, and the TPN to be started shortly. I'm sure that will help a lot.