Turning point yesterday with Nurse Practitioner visit

KarenMG

First of all, I finally was going to make it to the office after missing several appointments. So my designated "helper", to my horror did not show up to take me. No signs of life at his place. Now, I can drive, but getting into the thick of downtown traffic just rattles my nerves, in a really bad way. So that did not help. When the nursing assistant starting asking me the questions about depression, loneliness, hopelessness and etc, I started crying about it all and basically did that during most the visit.

I told the NP that I didn't know what to do because I feel that I have very little to no family support through this process, so how can I take chemo that is going to make me lose my hair and possibly/probably going to cause severe diarrhea that can put you in the hospital. Am I going to just drive myself to the hospital and console myself about all my losses? That sounds pretty pitiful but I think I just had a light bulb moment about the whole situation while I was there. The chemo would only be palliative, not curative. It really does not seem at all worth it.

So the NP set me up an appt with the Palliative care team to help me decide what's best for me and to help me with pain and symptom control. She tried to say that all my stomach pains were because of tumors. I was never made aware that there are any tumors in my stomach. There are some in my lungs and liver. I think they are just guessing truthfully about what causes symptoms. So that's aggravating and not helpful, but I think she was doing her best.

I've been sick since last Sunday after going out to dinner and then 4 hrs later vomiting it all up, with awful stomach pains all night. Have not been able to eat much since and have had a low grade fever all week. I've lost 7 pounds and feel week. So on and on with the tears. I think I just really realize that this is it and I may as well settle in for the downhill slide. I just sleep a lot lately and don't have much energy. I had a long talk with my sister and sons last night. Not a happy day.

I knew this day would come but I am hoping to get over this issue at hand with the tummy and at least be able to do one more little trip. It certainly has been sort of a stark reality check and sort of an acceptance of everything at the same time. That doesn't mean I have to be happy about it. This is what life has handed me.

I'm just really broken hearted about having to leave my grandchildren behind and not be able to do anything for them. It's tragic. They are 10 year old twins, a 14 y/o boy and an 18 year old girl about to go to college. None of them have any idea that things could go bad quickly and how bad it is. Of course no one knows how long we have but my body is telling me something and it's not great.

So yes, cancer truly does suck and steals lives right out of our hands. Not fair at all. I wake up every day wishing it were not true but then I really wake up and know that it is. It seems surreal.

Wish I had better news!

For now,

Karen

 

 

 

Trubrit

Dear Karen

I am not going to try to tell you how to feel. It is your body, and if you think that you have turned a corner toward the end, then it is not my place to tell you different. 

BUT, I can still hope and pray that you are wrong, and that you will rally. 

My heart aches for you, and what lay ahead, if indeed your body and spirit are talking the talk. 

Know that we are here to support you in every way. If you start feeling better, and able to head into more treatment, we will be extatic and run with you. If you start to slip away, we will support and comfort you.

Keep coming here and posting, no matter what it is. 

Sending strength. 

Tru

Butt

Karen, how long have you been in the fight? Butt.

SandiaBuddy

One more trip

Karen, I am so sorry about your circumstances.  There are no words to adequately express sympathy for the tragedy you are facing.  You mention one more trip.  Maybe with a new set of meds, that is a goal you can accomplish.  I hope you have some sunny days this Summer.

Kaleena

Hugs!

Hi Karen

im sorry you are having so many issues and no one to be there for you.  How frustrating it must be.  Did anyone tell you to go on a low residue diet?   I am not able to eat fresh vegetables, nuts, whole wheat, any fruit with skin or seeds  

   I know I’m from the uterine boards but I have had 9 major abdominal surgeries my most recent last year wherein they removed a tumor by my rectum removing part of my large bowel and rectum.  Then because I had a hernia mesh which was infiltrated into part of my small intestine they removed the mesh and part of small bowel and gave me a temporary ileostomy   I was fine until about November last year when I started having stomach pains.   The pains stsrted slowly then gets worse until i have several episodes of vomiting.  Once that happens I usually have an episode of diarrhea.  

I got tired of the diet so last week over the weekend wanted a salad. Also had some fresh fruit etc. by Monday the uneasiness started.  Tuesday I had to leave work because of the pain and then vomited off and on all night.   It took me a whole week this time to get over it

I’m sorry to tell you a little of my storywhen you are feeling so bad  but if i could help you in any way I would.  

My best to you

Kaleena

Kazenmax

Dear Karen, I wish there was

Dear Karen, I wish there was something I could say to help you. You deserve some comfort. I sincerely hope that you are wrong. If not, I hope the palliative care can help you.

Sending you all my love and strength

K

Lovekitties

Other help

There are several organizations who can provide a variety of assistance for persona alone.  My neighbor calls on Home Instead to help her get to and from medical appointments.  I know there are other orgs as well.  Yes they charge for their services, but mgiht be worth looking into.

Marie who loves kitties

KarenMG

Butt said:

Karen, how long have you been in the fight? Butt.

I was first diagnosed in

I was first diagnosed in September 2016, October officially.

KarenMG

Kazenmax said:

Dear Karen, I wish there was

Dear Karen, I wish there was something I could say to help you. You deserve some comfort. I sincerely hope that you are wrong. If not, I hope the palliative care can help you.

Sending you all my love and strength

K

Thank you K, it's not me

Thank you K, it's not me saying that things are headed down a decline, it's every caregiver I've had. So what am I to think? My former doctor only talked about how bad things look, only gave me 4 months to live about 2 years ago. So, I don't think I am assuming something negative because of how I feel. My new doctor immediately wanted me to go on Hospice. Maybe because I just can't bring myself to do some toxic chemo that would most likely kill me or make me feel like death. It seems the docs get angry or frustrated if you don't want to do that but they also state that it will not do a thing to cure me, it's only to "help" symptoms but then causes more worse symptoms from side effects. Maybe they are motivated by money. If so that's not their purpose of doing no harm.

My day started off with my dear family making me angry and hurting my feelings, so I might be a bit on the angry side of coping today. Thank God for the release we get from crying. I've really had it with all this so I have a short fuse. This post was not meant to sound like I am giving myself a death sentence, like I said, I only know what all the docs are saying and how I feel.

If anyone asks, I am not willing to travel far and wide at this point to seek out painful and expensive treatments. I've already done all that.

Thanks for the love K and I hope you are doing well.

Karen

Butt

When I sought a help of organizations, I was very disappointed. Not a single one including American Cancer Society

was helpful. I asked if ACS had some reduced rates for hotels near MD Anderson. They offered a few they turned out the same or higher than orbitz and Expedia. They have a lot of nice people who are willing to help, usually women, but in my humble opinion they have a lack of comprehension. It is hard to achieve the proper lack of comprehension. It is usually at least will take some grad school. American education is not in the top in comparison with other countries. May it is coming from there. I was personally stuck on many occasions with a border line nonsense when it came to medical situation. It is disturbing and troublin. Butt. 

JanJan63

I'm so sorry you're feeling

I'm so sorry you're feeling so down and without hope. I sincerely hope this is temporary. As far as the stomach pains go, I get some petty bad ones, almost doubling me over ones. It's gas. My 'parts' have strictures and adhesions and sometimes they get annoyed with me and hurt like hell. This happened last night. I was fine in the morning, actually better than usual, and I had lunch and then it started. Cramps, sharp pains, weakness, the whole thing. Finally, about ten last night I was violently sick and felt better after. 

During the night my body let go of all the fluid it had been retaining so I lost 9 pounds overnight and was up emptying my bag over and over. Today my tummy feels pretty good but I'm so dehydrated I can barely talk. I'm drinking lots of fluids but they just go right through me.

My point is that I don't know that I'd believe that tumours are causing the pains in your tummy. You're like me, they're in my lungs, liver and colon but not just scattered randonly throughout my tummy, that wouldn't make sense. I take GasX when I get like that. It helps a bit but not as much as I'd like. Basically I have to wait it out and it can last a few days. Then suddenly it's gone just as fast as it came. I have a number of odd things that they have no explanation for other than having cancer so I try not to worry about it. The retaining water and then suddenly becoming dehydrated instead. I'll get a fever as high as almost 103. I'm always cold. Some other stuff. All they say is it's the cancer. Oh, and fatigue almost every single day that makes it very hard to enjoy life. 

Yesterday morning, before all this started, I had about two hours where I felt almost normal. I used to be a busy person who could never sit still and always had to be doing something. I was like that for a couple of hours yesterday. I went out and didn't want to come home, I wanted to go do something. I felt almost like my old self! And then it was gone. I cried for a while in the afternoon. That taste of normalcy was so nice but it felt cruel once I was back to my normal weak self.

I was told at our last cancer support group meeting that fatigue is the most common complaint for people with cancer.

Sending you hugs. I wish there was some way to make you feel better.

Jan

KarenMG

Jan, I totally get all the

Jan, I totally get all the random pains. I have them and get frustrated about their origin.

Yes, my main issue has been fatigue for a long, long time. Now, it's about my "nap" time. I did wash a good many dishes and clean up a bit. Doesn't take much to get me tired but I find I really need that little nap. Problem is the naps are not really refreshing, I usually wake up in a bad mood and groggy for a while. I wake up in a horrendous mood a lot of days. So when someone upsets me first thing in the day it's hard to take. I have finally learned to completely turn the phone ringer off until I'm ready for the day.

It disturbs me that I have very little appetite, especially in the evening. So I eat a good breakfast on a good day like today and then don't want anything until way late. I have Glucerna but it usually makes me quesy. The NP told me about Premier, a high protein and low carb supplement that is really supposed to help. It's a little pricey but I'm gonna give it a try.

I'm sorry that you have such ups and downs with the fluid levels, that's kind of unusual to me.

Thanks Jan, all I can do is hope for a few good days that I can go take a little mini vacation. I was looking into Disney/Epcot for my twin granddaughters' birthday and to let my son take them all around the parks and I could just chill in a nice hotel and do a little exploring if I felt like it. I shall see!

Take care Jan,

Hugs, Karen

Annabelle41415

Sorry

I'm sorry that you have been so ill and feel like their is no family around to help.  That has to be hard, since you do have family living close to you.  You can only do what your body feels like it can do.  Some days might not be as good as others, but you said you wanted to plan another trip so that sounds like a good idea.  Hope the pallative care appointment goes good and that doesn't mean that you are near the end.  It's just a good management for what you are going through now. 

Kim

NewHere

Karen

As Tru said, I am not going to tell you what or how to feel about your body.  And your decision is yours.

That being said, my thoughts are with you and will put my two cents in.  Much like I threw them in heavily when you were considering going to Hawaii and I repeated "Go!"  over and over.

I am also on pallative chemo.  Have been since October and have been told that was the plan from  two years ago since my cancer came back - anything from that point on will be to maybe slow things down, but not really cure things.  It is a heavy weight to carry just knowing that situation was happening, let alone actually dealing with the treatments.  All of us are able to shake off dwelling on it too much or often, or at least I think we do.  I know if I did dwell too much, it would drag me down. Perhaps looking into ride services and someone to speak with may help with those burdens.  (Being on chemo bottle when even being a passenger gets to me badly at this point.  My nerves are shot there.)  Every time someone is negative, which sounds like happens too often with some of the people you have telling you things, try to place it in context as much as possible. Such as the doctor who said you had four months

But my first chemo this time (on FOLFORI) was brtual and during that time I could definately see a point where I would say I am done.  Fortunately hey dialed the drugs in (or it was one off) and since then it is has been tolerable.  But I am getting more tired.  I basically slept the last four days since my hook-up.  And I am still tired.  I was so tired this time that during these four days I questioned whether I could do anything again.  And whether it was worth it.  I saw your post and felt I was too tired to even properly type anything of value.

You have a love for things, such as travel, and four wonderful grandchildren.  Try to stay as positive as you can.  My pallative care has slowed things down.  Some tumors may even be dying it looks like, though some are growing.  I am able to continue to continue to have enough good days and times that it is acceptable still for me.  It is not easy, and there will be a time for each of us where a decision has to be made, but until then I hope the positives in your life conitnue to buoy you through this all and I read about future trips.

 

 

Twinzma

Karen, I am so sorry!

I wish I had answers to lend that would help, but I have none. I am sorry you are now faced with talking about palliative care. It just not fair. The one thing I am learning each day though is the resiliency that kids have. So please know that no matter what ,those grandkids are going to be okay. Don't ever add on to your plate any guilt there. They are stronger than you will ever know! Please honey before you decide if you are going to stop treatment, step away even if it is a staycation close to home. Go to a Spa resort at least just for a day or two and gather your thoughts then you can come back and decide. You have had so much thrown at you with very little support from family and I think stepping away for a brief period of time may do you some good. Hang in there love. As always you are in my thoughts and my prayers! Hugs!!!! 

KarenMG

Twinzma said:

Karen, I am so sorry!

I wish I had answers to lend that would help, but I have none. I am sorry you are now faced with talking about palliative care. It just not fair. The one thing I am learning each day though is the resiliency that kids have. So please know that no matter what ,those grandkids are going to be okay. Don't ever add on to your plate any guilt there. They are stronger than you will ever know! Please honey before you decide if you are going to stop treatment, step away even if it is a staycation close to home. Go to a Spa resort at least just for a day or two and gather your thoughts then you can come back and decide. You have had so much thrown at you with very little support from family and I think stepping away for a brief period of time may do you some good. Hang in there love. As always you are in my thoughts and my prayers! Hugs!!!! 

Your very heartfelt response

Your very heartfelt response brought tears to my eyes, it's very touching when you get the feeling that someone really cares...I got that from you. I am trying to get to the point that I can actually feel like going on a staycation in town. There is a beautiful hotel I want to stay in, very pricey but who cares right? However, if I would only be able to stay in the room and not venture out a little around town and enjoy a restaurant or two, I'm not sure it would be worth it. I'm still feeling a lot of nausea since getting sick last Sunday night and really have only been to that NP visit. I'm trying to still get out of the house today and do a tiny bit of shopping. I hate that everything seems so difficult.

But I am truly touched by feeling that you care, I don't get that a lot as you say. Maybe I expect too much?

Anyhow, if I don't get off this computer I'm not going to get anything done!

Take care...Karen