It has been a while

Hi All -

It has been a while since I posted last.  I am grateful for the last couple of weeks being relatively calm.  Only little hitch is that I caught the stomach ick from my kids.  It is a little different having the stomach ick now that I have damaged intestines.  A lot more painful - but got through it with meds and rest.

As you know by now, I have weekly blood work and dressing changes from and for my mediport.  This happens each Tuesday.  The doc gets the results by Thursday and decides what should go in my feedbags.  This usually goes smoothly and I get my new feedbags each Friday.

Not so this week.  My liver enzymes are acting up - side effect from the feedbags (one that I did not know about - why don't they tell you these things?).  So I have to take a break from the feedbags to let my liver get back to normal.  No biggie from what the doc office said.  So keeping my weight up is the issue.  I am lactose intolerant.  The nurse told me that all the Ensure products are lactose free.  However while I was at Walgreens, I read the nutrition label and it has Milk proteins as the third ingredient.

Freaked me out a bit.  Did a little research when I got home and talked to my mom.  Milk proteins do not contain lactose.  So my mom - who is always at the ready - went back to Walgreens and got me Ensure - high calorie content, vanilla flavored - only one I will drink.  Had issues with it going right through me before but hopefully with meds, I can maintain it.  Keep your fingers crossed.  Say a prayer.  I cannot afford to lose any weight.

Since I am here  - Three things I am grateful for:
1.  My Mom - she is so helpful all the time.  I say thank you all the time.  But saying Thank you does not even get close to expressing my gratitude and appreciation for her.
2.  Good docs that keep an eye on my health
3.  All the prayers being said for me.  I do not know who all prays for me - but I am grateful for each and everyone.

Get to do huge Biography projects with my children this weekend.  Thankful that I am healthy enough that I can help them.

Seeing the doc on Tuesday - I will keep you posted.

More later -

W, W, W, W? and 3 things I am grateful for

Who?  Me

What? Cervical cancer, Rheumatoid Arthritis, Intestinal Enteritis, Bladder Cystitis, Degenerative Disc Disease, and a little crazy

When?  RA - 1995, Degenerative Disc Disease 2008 to current, A little crazy 2002, Cervical Cancer 2010, Intestinal Enteritis 2011, and Bladder Cystitis 2011.  Numerous surgeries: C section, 2 hand surgeries, Plates put in my right foot to fuse joints,  Disc resection in my lower back(need another surgery, but the doc won't even consider it due to my low weight (every time I type that, I have to laugh) and general bad health, Small intestine resection - took out the 18 inches that caused blockages and extreme pain, left knee replacement and numerous procedures - some more painful than others. Very grateful to have a pain management doc to help with all the tremendous pain.  Most time the meds work and other times I just want to bang my head against a wall to distract from all the other pain.

Why?  Why not?  A very special cousin of mine and a great Christian, posted a comment in the last couple of months and two things struck me:  1.)  She has gone through such pain, infections and probably a host of other issues that I do not know about following a horrific car accident- but she posted that she was sure my pain was greater than hers.  I have a hard time with this one - we all experience terrible pain in different ways.  We live with the pain daily.  I think her pain is greater than mine.  How to measure?  I don't think the 1 to 10 scale applies here.  2.) She asked what God is trying to teach us?  My only guess is to help others through their sufferings.  If you have any other ideas - please let me know - I am open to hear your point of view.  Life is not always what you expect it to be - but I do not think God willy-nilly decides who should hurt and who should not.  Sometimes you just draw the short straw.  And from that, you teach others.

3 things I am grateful for:

Note:  Some items may be repetitious

1.) A loving God
2.) My wonderful family near and far
3.) The really good steak that a wonderful friend grilled for my children and I.  I ate a very tiny bit - but lost it all about 2 hours later.  But dang, it was GOOD.

More later -

Some nights are harder than others

As many of my family and friends know, I have triplets - two boys and a girl.  They are currently 9 and will be 10 soon.  I love them to death, wouldn't give one up for anything but sometimes they drive me up the wall.  Last night was a bad night.  I would tell them to do something and of course they wouldn't do it.  The most common plea from each of them was "I didn't hear you."  They say this while they were standing approximately three inches from my face.

I get so frustrated that I cry.  Whenever I get mad or extremely frustrated I cry.  About anything and everything.  So I took their Ipod touches away for a week (a "little" harsh) I know.  They are getting them back tonight - so much for the week.  They will get them back with the explanation of why I took them and what they need to do around the house to keep them.  At the top of that list is listening and doing what I tell them to do.  No kid slavery, just simple things like clean up your mess and put on your pj's (now!)  A very wise woman (my mom), told me they only have one childhood and not to screw it up - they are kids.  Kids don't always do what you tell them to do in the expected amount of time.  I know, I know.

I want them to have as many freedoms as they can within reason.  I want them to be happy.  I want to watch them grow to be the wonderful adults that I know they will be.  I will then consider that I did a pretty fine job.

On other points, I have been crying a lot lately.  Feeling overwhelmed.  Fatigued beyond belief and feeling like I am coming apart at the seams.  I am seeing my psychiatrist in February.  It was supposed to be this month - but insurance blunders galore messed that up. And yes, I see a psychiatrist for a host of reasons that I will not enumerate here.  I will just say what started with the baby blues when the triplets were born at 28 weeks, 5 days has morphed into other issues.

As a side note, when the triplets were born, they had some medical issues.  But they have overcome them all - I consider them my miracle babies.  God is good.

Since I have been crying a lot lately, my wise mom wants me to do a gratitude journal to see if it will lighten my mood.  So here goes:  3 things I am grateful for:

1.  God - who has seen to intervene at the most stressful moments and who is with me all the time.
2.  My mom - whom helps at the drop of a hat to do anything I need.  Thanks Mom!
3.  My miracle babies who are almost ten (my how time flies!)
4.  One more - all those who pray for me daily.  From the dry cleaning lady who is always so nice and has put me on the prayer list at her church to all those who have done the same without my knowing and for all the prayer warriors.  I appreciate all of you more than you could ever know.  If you ever need a prayer back, just let me know.

More later -

Biopsy Results

Hi all - First off, thank you for all the prayers.  God was listening intently.  My biopsy results came back clean!  Yea for me!  Thanks again for all of the support.  Hopefully this means that I won't have to go back for three months.

More later-

Where to start?

This may be one big rant - but hey it's my blog.

I am on COBRA.  My previous employer has had the same health insurance company for years.  This year they changed.  No biggie.  Except with the holidays, my account was not swept for the premium until this past Wednesday.  So the new insurance company did not know I existed until yesterday.

When I spoke with my case manager, she said that the previous insurance company had sent over info for patients like me who has every specialist, home health care and am using TPN (lovingly known as my feedbag from here on out).  So had they known about me, they would have been working with me a month ago.  Kudos to the new insurance company: they got right on it and now everything is set up.  Deep sigh of relief.  Had I not made a million phone calls, I would not have received my feedbags or had my mediport changed.

Mediports have to be changed once a week.  The line to the mediport goes from the port, up over the clavicle and ends somewhere by the heart.  It is installed under semi anesthesia and x-ray as they have to thread the line through a vein. Chance of infection goes way up if the dressing is not changed weekly. OK, enough about that.

I had a post surgical appointment yesterday with the oncologist.  This was rescheduled from last week because he was running way behind and I have no patience.  So I was there for THREE hours.  I was getting ready to walk out when they finally called my name. I did not have a choice really. Then they put me in a room and told me to undress from the waist down and give you a "sheet" to cover up with.  So for at least an hour, I was in the examination room with a sheet covering my lower body - not the most comfortable situation.

He was looking for the surgical notes from my last two procedures as I seem to have a new lesion.  Yea me.  He took a biopsy that first consisted of a shot of lidocaine - which if you are familiar with, it burns like the dickens especially in a very tender spot.  But at least I did not feel the biopsy.  Thank the Lord. 

I am to call next week to get the results.  If it is a precancerous lesion, he wants to try a new chemo cream.  Remember the old one - burned me to death.  He said this one might too but not to the degree that the first one did.  RIGHT.

I will keep you posted on the results of the biopsy.  Happy Weekend to all.

More later -

I received the following email today and agreed to publish it here

Dear Kelly,
Thank you as always for your hard work on My Cervical Cancer Journey.  I am a social media marketer and outreach coordinator for many companies and causes.  Today I am reaching out as a personal effort on behalf of my cousin Bert:

I’m Bert. As you know, cancer is the hardest thing many of us will ever go through in our lives. In the space of ten months, my wife left me, my boss fired me, and I don’t have a home to call my own anymore.  What’s more – I’ve been diagnosed with metastasized cancer. I’m also the father of a five year old boy. We all know the traditional country music story line: “I lost my woman, my job, my house… even my dog.” Well, those songs rarely mention cancer, so I had to write my own version: http://youtu.be/qwZEZ6y6fow.
I’m doing everything I can to stay strong, and this song is one way I can greet it with a sense of humor. But I need help and support, and can’t go it alone in this latest chapter of my story. I’m asking you to help sing along; please embed this video link on your blog, and help share my story.  I will definitely link to your blog on my own cancer blog!
Your contribution will help me write the next verse; please share!  This is the site where people can make a donation:  http://bertscholl.com/ It would mean a lot to me and my family if you saw fit to share this.  Please do let me know.
 Wishing you the best in 2012,

Jessica Bloom Paulson

Cancer affects so many - so sad that people get the initial diagnoses and don't know the brutality of the diagnoses until the treatments begin or if you decided against treatment it is a brutal decision for the patient and their family.

So here's to Bert.  I wish him all the best.

More later -