Topic: Sister (40) was diagnosed just after Thanksgiving and I'm struggling.

warning:  super long post!

I have read many posts and I do agree that this is the best little community on the internet that I wish I never knew existed!  So, where to start... I am the baby of three girls.  My oldest sister, Meredith, is 5 years older than I am and my other sister, Mandy is 22 months older.  We grew up close and my parent's would tell us that we were "the best presents that your father and I ever gave you" and the older I have become the more that is the truth. 

So... history.  My sister, Meredith, was diagnosed with primary sclerosing cholangitis when she was 17 (1992).  The dr at the time told my mom that he wasn't sure when it would present itself.  5 years?  10?  20?  Well life went on and my sister graduated from college, married and had 3 kids.  They are currently 10, 11 and 13.  In these past 17 years, she was diagnosed with ulcerative colitis, Restless Leg Syndrome, Chronic Fatigue, Celiac Disease and had almost all of her colon removed.  She used to be a teacher and was very active.  Now she is on disability and care barely function. 

In September of 2013 she started experiencing a "U" shaped pain from her abd around her side to her back.  She made a dr's appt but before she could make it, the pain was horrible so she went to the ER where they ran a lot or tests and scans.  They found a "suspicious spot near her Pancreas." She was sent to another GI Dr and more scans.  Somehow, information got dropped and we didn't find out the results of her scans for over a week, but when we did, the dr said it was a tumor on her liver.  She went to Johns Hopkins and had and ERCP where Dr. Benjamin Philosophe diagnosed her with Extrahepatic Cholangiocarcinoma.  I actually don't know what stage it is. 

She had an MRI and PET scans b/c there was now another concern about a spot on the liver.  Thankfully that was benign and her cancer has not been metastasized.  Finally Good news!!! I should note that Johns Hopkins (JHH) is aprox 80 minutes from where they all live and since my sister was at home and her pain not really managed, she would come and go from the local ER. 

Oh I should say that at this point, her restless legs were out of control.  They previously had her on medication generally taken by Parkinson's patients, but it was not working at all.  Her legs were going like she was having seizures.  Just her legs though.  This meant more ER trips and my parents would video tape it to show anyone that would watch.  Finally my mom looked up that low iron makes restless legs worse, but iron supplements make my sister sick to her already upset stomach.  She would be up for 3 days and barely sleeping and would be going out of her mind to sleep.  She would try everything to sleep, even prescription sleep aides.  My mom took the bull by the horns and took her medications from her and dropped her back to basics and gave her Benadryl to help her sleep.  That at least gave her some relief. 

She is to start chemo and then reevaluate her tumor to see if it can be operated on.  Well, her iron is super low (shocking since mom researched that with her restless legs) so they can't start chemo.  She just got her port yesterday, but prior to was feeling very sluggish (which is a lot b/c of her chronic fatigue).  She had jaundice pretty bad and was scheduled for another ERCP for today at a hospital in PA.  So when she got her port she then went to see her Radiation Oncologist who had just received her bloodwork and her bilirubin# was really high and add that with my sister's 101 fever, they sent her to another hospital. 

She spent the night there two nights ago and was transported to JHH today and had her ERCP around lunch today.  She also had a blood transfusion which I'm not sure if it's because of her low iron or low red blood cell count. 

Let me add in just a smidge more info.  I had to have a fairly emergency back procedure on 12/7 (they actually did my surg on a saturday!) and my dad has to have his own spinal fusion in July and he is barely walking.  So my mom, who fought breast cancer and is in remission, has had to take care of me, my dad, my sister (who moved in with them) and my sister's 3 kids. 

[this is super long.  I am so sorry]

Oh and her feet are so swollen!  She sleeps so frequently and I just feel so helpless.  I worry about my mom and how much she can take and my dad, physically, what he can do.  I worry about my sister and her kids.  They know that their mom is sick, but they really have never met anyone that has had to have chemo and don't really understand what is about to happen.  I live in Washington, DC and my family is 2 hours away.  Currently, my sister is at JHH in Baltimore. 

I am so scared.  I try to hold it together for her, but I find myself in tears quite frequently.   

She was misdiagnosed and laughed at by a local ER dr (GI) and made to feel stupid and told that her PSC was not real.  When people ask me how I'm doing, I really just say "ok." I don't want to burden people with everything that is going on right now.  I know you guys understand as you have all been through it.  I try not to be negative but those thoughts creep in.  Then I feel guilty for allowing them space in my brain. 

This felt great to write out!!!  If anyone does read it, thank you for having this wonderful community! 

-Mel

Re: Sister (40) was diagnosed just after Thanksgiving and I'm struggling.

Dear Mel (is the Mel for Melanie? If so my sister is Melanie) welcome and I am so very sorry about your Sister, Meredith. It is like she has a horrible Domino effect, one thing after another. The best thing you can do is try to take one day at a time as each day seems to present something different. NEVER apologize for what you write as it is a very cathartic thing to do and we get to know you and your family better. For your Mom, perhaps she can start accepting some help from family and friends to life some weight off her shoulders. Maybe some one could do laundry, friends could make a few dinners and go shopping for her. We can't have anyone wearing down as this can be a long journey. Know that Meredith is in good hands at JHH! We all understand that this is like getting slugged in the stomach with a bat but I can tell you that once a game plan is in place and begins your fright will turn to fight and you must try to be strong for your Sister. We are here for you and feel free to rant anytime. You are not alone in this and YES we all understand. Please keep us posted on Meredith. Sending you mammoth hugs!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Sister (40) was diagnosed just after Thanksgiving and I'm struggling.

Hi Mel,

Wow!  All I can say is that your sister, you and your whole family have sure been through a lot.  I am so glad that you have joined our family that no one wants to belong to but are so happy to have found.  No need to apologize for long posts.  It is good to get it all out there, both for you and for anyone here that has advice to help you along.  You will find that everyone here is willing to help and support in any way that we can.  I know it's not easy, but try to take things as the come, one thing at a time, one day at a time.  If you try to figure it all out at once it is more than you can comprehend.  Hopefully things will begin to settle down some and sort themselves out and Meredith will be given some answers and direction on how to move forward with her treatment.  Know that we are all here for you and your family to help and support you on this journey that no one wants to be on.

Please let us know how things are progressing.  We care.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Sister (40) was diagnosed just after Thanksgiving and I'm struggling.

Hello Mel -
As you know, welcome to the family no one really wants to be a part of. You won't find a better group of people to support you through this. Don't ever worry about the length of your posts. Some of us can be wordy (that would be me) but we can always come up with some way to help.

I feel your pain right now. My youngest son was diagnosed with thyroid cancer the same day my husband got his CC diagnosis. It was a rather overwhelming summer to say the least. We got through it....you will too.

One thing I do know is that people want to help they just don't know how. And think, every little chore they do is one less you or your family has to. I always suggest that you make a list of who has volunteered to help (all those people who say if you need anything let me know) and assign them a task. I had a couple people at work that cooked meals for us, one gal organized a fundraiser garage sale. My sister is a pretty good cook so she made some freezer meals but also stopped and got things like frozen lasagna.

I also was told of this website: http://www.lotsahelpinghands.com/ which allows you to set a web site where people can volunteer to help out with specific tasks you need done and post on it.

Hope this helps. Keep us posted on how things go.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Sister (40) was diagnosed just after Thanksgiving and I'm struggling.

Ah, I'm on the flip side of the patient/sibling relationship than you, I'm the patient and have a sister I am very close to. I think the hardest thing about being sick is leaving my sister at far too young an age (I'm 56, she's 53), but just knowing you are there helps her immensely. You have so much on your plate so vent away for as much/as long as you want - I think it's incredibly cathartic and you need that.  We lost our youngest sibling nearly 3 years ago (in March). He was 48 and it was sudden and so unexpected. Venting to people who had been there was so helpful to me.

I agree that people want to help, but often don't know how. Make a list of what you/your family need.  I like krisv's suggestion above.

I'm sorry your family is touched by this cancer. In the end, we're here to listen

Impatient patient.

Re: Sister (40) was diagnosed just after Thanksgiving and I'm struggling.

Hi Mel,

Welcome to the forum where you have found there is a wealth of support and knowledge.

I so feel for you right now.  It is incredibly hard holding everyone up and trying to keep it together yourself - that's before needing to have medical treatment yourself.  My sister was 41 when she was diagnosed with a young family and 6 hours away from me. 

I love Krisv's advice about getting people to help.  There will be friends that will go over hot coals for you and allowing them to will relieve some of that stress.

You will find the strength to get through this I promise.  On those hard days, come here and ask for support and take it one day at a time.

x

Clare

In the stars now . . . .

Re: Sister (40) was diagnosed just after Thanksgiving and I'm struggling.

THank you all for your kind words and encouragement.  I talked with my mom and I am going to be in charge of getting some people that have offered their help, into the house to help.  it's a little daunting, since I am 2 hours away from them, but  basically, my mom lets me know what she needs help with.  laundry or food or cleaning or taking care of my sister's kids (homework/clothes/tumbling....). I just set up a simple email chain. 

The update is my sister had to get a wire mesh stent at Hopkins, which is good b/c her bile ducts were just clogging.  She is home and had her chemo consultation/class today and she is starting tomorrow!  I am so happy that she is finally starting chemo.  She got her diag on 12/6.  She was released and is home but now she is having problems where whenever she eats, she is in a ton of pain and she gets bloated so badly that it looks like she is pregnant again. 

I am driving up to Pennsylvania on Friday with a wig from my friend that went through chemo for breast cancer, but since it was the summer, she really didnt' want to wear a wig.  I am also going to be with my two nieces (10 and 13) and I'm going to talk with them to let them know that their mom is going to be really tired and that she will lose her hair and that I will be there for them.  My oldest nice actually just went to a counselor yesterday.  Hopefully that will help because she is really very sensitive and emotional. 

We were told that basically, she is not able to be cured.  Not that this comes as a surprise but I feel more breakdowns coming.

Re: Sister (40) was diagnosed just after Thanksgiving and I'm struggling.

Lainy wrote:

Dear Mel (is the Mel for Melanie? If so my sister is Melanie) welcome and I am so very sorry about your Sister, Meredith. It is like she has a horrible Domino effect, one thing after another. The best thing you can do is try to take one day at a time as each day seems to present something different. NEVER apologize for what you write as it is a very cathartic thing to do and we get to know you and your family better. For your Mom, perhaps she can start accepting some help from family and friends to life some weight off her shoulders. Maybe some one could do laundry, friends could make a few dinners and go shopping for her. We can't have anyone wearing down as this can be a long journey. Know that Meredith is in good hands at JHH! We all understand that this is like getting slugged in the stomach with a bat but I can tell you that once a game plan is in place and begins your fright will turn to fight and you must try to be strong for your Sister. We are here for you and feel free to rant anytime. You are not alone in this and YES we all understand. Please keep us posted on Meredith. Sending you mammoth hugs!


It is actually short for Melissa but since my two older sisters both have M names, I actually answer to pretty much any M, female name.  Melanie.... Michelle... Megan.... Thank you for the hugs.  It's very difficult with some of my friends because they are there for support, but it's hard when I hear/see about my sister and her struggles every day.

Re: Sister (40) was diagnosed just after Thanksgiving and I'm struggling.

Dearest Mel, you really are doing fine and you are doing everything that is needed to help. Once treatments start you will feel better as something is being done and the fright will turn to fight. I am thinking it may be a good idea to involve the nieces in helping with their Mom. Little chores to make them feel they are helping everyone. Please let us know how the chemo goes. By the way one thing that really helped  me with my husband was, to stop the phone calls, all day, every day repeating and repeating. So, I made up an email list and every night sent out a blanket email to all about the day he had. Without all the phone calls all day it really toned everything down. You bill be fine after you jump your first couple of hurdles and we are here for you as well!You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Sister (40) was diagnosed just after Thanksgiving and I'm struggling.

That is a fantastic idea with having the kids help with mom and setting up an email chain.  I try to lessen my mom's stress b/c I need her healthy to be able to take care of my sister.

Re: Sister (40) was diagnosed just after Thanksgiving and I'm struggling.

Unique_Username wrote:

THank you all for your kind words and encouragement.  I talked with my mom and I am going to be in charge of getting some people that have offered their help, into the house to help.  it's a little daunting, since I am 2 hours away from them, but  basically, my mom lets me know what she needs help with.  laundry or food or cleaning or taking care of my sister's kids (homework/clothes/tumbling....). I just set up a simple email chain. 

The update is my sister had to get a wire mesh stent at Hopkins, which is good b/c her bile ducts were just clogging.  She is home and had her chemo consultation/class today and she is starting tomorrow!  I am so happy that she is finally starting chemo.  She got her diag on 12/6.  She was released and is home but now she is having problems where whenever she eats, she is in a ton of pain and she gets bloated so badly that it looks like she is pregnant again. 

I am driving up to Pennsylvania on Friday with a wig from my friend that went through chemo for breast cancer, but since it was the summer, she really didnt' want to wear a wig.  I am also going to be with my two nieces (10 and 13) and I'm going to talk with them to let them know that their mom is going to be really tired and that she will lose her hair and that I will be there for them.  My oldest nice actually just went to a counselor yesterday.  Hopefully that will help because she is really very sensitive and emotional. 

We were told that basically, she is not able to be cured.  Not that this comes as a surprise but I feel more breakdowns coming.


Hopefully, the stent will help a lot. I had a blocked bile duct too I had per cutaneous drains and that helped bring my bilirubin down to normal range (I also had an issue with the tumor squishing my duodenum and preventing me from eating or drinking without throwing up. I had to have, in essence, a gastric bypass, to re-rout my stomach, but what a difference it made in how I felt!  Hopefully, her procedures will give her relief, so she can eat and get energy back.

You may be surprised that she doesn't lose her hair. My oncologist hold me that most people on my chemo regime (gemcitibine/cisplatin) don't lose their hair and that was true for me. A nurse told me it might thin, but it didn't even find that to be the case. For some reason, the chemo they give breast cancer patients makes them all lose their hair. I'd gladly shave mine off and go bald the rest of my life if it gave me an advantage, but at least keeping my hair was a tiny perk.

Lisa

Impatient patient.

12 (edited by LisaS Wed, 29 Jan 2014 16:33:05)

Re: Sister (40) was diagnosed just after Thanksgiving and I'm struggling.

Unique_Username wrote:

That is a fantastic idea with having the kids help with mom and setting up an email chain.  I try to lessen my mom's stress b/c I need her healthy to be able to take care of my sister.



I use caringbridge.org to update everyone on my "list."  It's a free website. You can post an update and people can log on and see it. They can also choose to get email alerts anytime the patient (or patient's family on the patient's behalf) post something. Friends can also leave comments and, from a patients perspective, seeing all their posts is a huge emotional boost. People have to register (it's free), so it's not as public as Facebook. I think it's a great tool. You can share as much or as little as you want.

I am pretty sure there are also websites to help you with handing out chores or tasks. I have a friend whose husband has stage 4 lung cancer and she's mentioned one. Let me do a quick search and see what I can find. Make it as easy on you as you can.



Do a google search for something called sign up genius. I'm on my iPad right now and I can't see if it's a .com or .org, but my friend has used this. If I get to the point I need it (my husband was already the cook in our household, so I haven't needed assistance with meals or chores, since it's the two of us), but I wouldn't hesitate yo try it out.


Found another one called mealtrain.com.

Looking for one that might include chores + meals! all in one.


Ha, I keep adding to this post - found another site called care calendar.org. Might encompass meal sign ups + more.


Good luck.

Lisa

Impatient patient.