Cookies are required for login or registration. Please read and agree to our cookie policy to continue.

Newest Member: nailofthe9

Off Topic :
SI Prayers/Mojo Request...Cancer

default

 Deeply Scared (original poster administrator #2) posted at 11:18 AM on Friday, August 26th, 2016

I'll update this weekend.

You all are amazing...truly!!!

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7644451
default

 Deeply Scared (original poster administrator #2) posted at 3:30 PM on Sunday, August 28th, 2016

Hi...

I've never completed my 2nd round of chemo with these new drugs. They are aggressive and mean...two things I'm not I get sick almost every single day now and I'm always scared of that happening when I can't get to a restroom in time. And that did happen a couple weeks ago in a parking lot...I just couldn't hold it down So I opened up my car door and leaned over...God, how awful for anyone that had to clean that up.

I've lost all my hair now...completely bald. The good news is I haven't had to shave anything on my body for over 3 months now The pain I have every day is getting old and tiresome. Sharp, hot, stabbing pain that will literally make me groan out loud. Which then makes me feel like a total wimp.

My work has been incredible...anything I need...they do for me. Which then makes me feel super guilty! LOL!! They are always concerned about me first. Is it too much to ask of me to get the files from upstairs? Why yes...I have cancer you asshole!! I do throw out my cancer card about 2 times a month now...keeps them on their toes

MH had been nothing short of miraculous...truly. He does things for me that when I'm alone and thinking of him...I just start crying at the depth of his love for me. It's amazing and should be recognized for everything it's worth.

I have chemo treatments through the end of November and all I want is a wonderful Christmas...it's our favorite time of year and I want it perfect. Cancer or not...I just want it to be one of the best we've ever had.

Cancer is awful. There is nothing, NOTHING nice about it. It's ugly, it smells it's painful and I hate every single thing about it.

We certainly appreciate all the kind messages and prayer!!! Please, please pray for MH as well...he needs so much support and asks for none. I worry about him.

Thanks everyone!!!

AK 47 THIS SHIT!!!!!!!!!!

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7646162
default

 Deeply Scared (original poster administrator #2) posted at 11:13 AM on Monday, August 29th, 2016

Awesome...thank you everyone!!!

It's funny...we were headed out yesterday morning to go have breakfast with MH's mom and our neighbor down the street was taking a walk and she leaned in my car door and asked how I was doing...I said "I'm doing pretty good!" and she said "Well, hell...YOU'RE DRIVING!" and I suddenly realized that yeah...I'm not doing so bad after all!!!

I've been so lucky my whole life to have been isolated from cancer...I don't know what to gauge anything on...so I just kind of assume that people go about their regular business and still look good through chemo.

Well, apparently I'm not the norm...go figure

Thank you again!!

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7646801
default

 Deeply Scared (original poster administrator #2) posted at 11:46 AM on Monday, August 29th, 2016

(((((Hope)))))

Love you too

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7646808
default

 Deeply Scared (original poster administrator #2) posted at 3:31 PM on Sunday, September 18th, 2016

I wanted to update this thread. But I went to bed than fell asleep due to the pain medication I took.

Thank you all for your continue love and support!

Friday I had to have another blood transfusion (2nd one in 2 months) due to the blood panel numbers being low. My legs and ankles were so swollen and skin so tight it felt like my skin was going to tear open

So all day Friday, I laid in a bed while 2 pints of someone else's blood was pumped in to me. I kept praying that I hope there were a nice person and not some crazy animal abuser

My oncologists are taking me off chemo because the drugs are just too strong from my healthy blood to repair itself from. My numbers are constantly low, my kidneys are having to work over time and overall my cancer is just not responding to the chemo.

The good news is even though the tumors have gotten bigger...they still haven't spread!! Praise God! So now we're off to the main campus at MD Anderson for the next month with various appointments to get me on the trial drugs. Which includes another biopsy...which I swear to God hurt more than anything I've been through so far, so I'm really not looking forward to that procedure.

Once they find a trial drug that matches up with my cancer then the new testing begins. I should probably now in about 3-4 weeks when I'll be starting.

My eyelashes are gone...my eyebrows are gone and I have a little bit of peach fuzz on my head I have pain 24/7 and I bruise so easily now, it's just awful. Poor MH....he listens to me moan at night I know it's just killing him

Overall, if I didn't have this pain, I wouldn't remember half the time I have cancer because I feel good, but the pain is a constant reminder of this fucking disease living inside me that wants to kill me. I hate it.

So there's my update...not bad but not great either. Just plugging on along and praying that something, somewhere will knock this out of me

I forgot....

AK47 This Shit!!!!!

[This message edited by SI Staff at 10:11 AM, September 18th (Sunday)]

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7663917
default

 Deeply Scared (original poster administrator #2) posted at 12:59 AM on Monday, October 3rd, 2016

So here we are:)

This past Tuesday when we met with my main oncologits, he had some really good news and some really terrible news.

We'll start with the good because then I can talk about the bad and then circle back around to having hope. Because that's what I need most now is hope and a miracle

I've been accepted into the MD Anderson trial drug program. Excellent news...we have an consultqtion appointment this Thursday...this is going to be a huge day.

What we're counting on is finding a trial drug that matches my strain of cancer. There are basically 3 options we have here.

1. The best. We meet and we're presented with a drug that matches my cancer..we can start right away!

2. There is a drug that s a match, but it's in Germany and won't be here for another 2 weeks...come back then. Ok...still hopeful and ok!

3. There is no match for my type of cancer...we will call you if something become available.

If we are me with option 3. I will die. Without successful treatment I will die within a matter of months. At that point, we go where ever I need to go....if it's a treatment in China...we'll fly there. I don't care....I just know that this can't be it.

This type of news is something that is not even in the releam trying to explain the feelings behind such a powerful statement. It's a fact and I have no choice then to face it. I hate every fucking second of my life right now. How I wish it was different.

MH and I are so connected...we have had the most beautiful, deep and bonding talks, every day and every night....just sentences pouring out of us with how lucky we are to be here with each other. How lucky are we to have this time to really cherish each other and know that no matter what we will love each other forever and ever.

I couldn't ask for a better husband. He never says no to me...just is living is life right now to make sure I"m comfortable and not in need. Last night, the pain was so bad in the middle of the night..MH got up and came and sat on mysids of the bed and just stroked my arms. For over an hour he just sat there quietly..doing what ever he could do to help. Unbelievable and unconditional love.

I'm so scared of what's happening to us...but I have to hold onto hope and love.

Please pray that there is a trial drug for me. I need that most. Prayers for a scientific match.

AK-47 THIS SHIT!!!

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7676172
default

 Deeply Scared (original poster administrator #2) posted at 12:04 PM on Monday, October 3rd, 2016

Thank you everyone...so very much.

Love, encouragement, prayers...all what I need most right now.

I will update either Thursday or Friday, depending on when we get back from the main campus.

Thank you again

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7676396
default

SI Staff ( Moderator #10) posted at 8:24 PM on Thursday, October 6th, 2016

Good news from DS that she asked me to share:

MD Anderson has found a match for me in a phase II trial. We still have criteria to meet to be accepted. I have to have another blood transfusion on the 12th to raise my hemoglobin level. If the labs are good after the transfusion I start the trial on the 14th!!!!

posts: 10009   ·   registered: May. 30th, 2002
id 7679383
default

 Deeply Scared (original poster administrator #2) posted at 11:47 AM on Friday, October 7th, 2016

Hi!!

Thank you AN for delivering the news yesterday

The cancer is still incruable (sp?) but with the Phase II drug...I will most likely be able to manage it. So that's a great thing....that means more time here!! I don't know how long this will prolong my life...but I'll take anything.

We still have more lab work to get through and another blood transfusion prior to Phase II kicking off. So it will probably be last next week when we start the new drugs.

MH and I FINALLY got good news...it's a horrible thing walking around and planning your own death. Grim.

Thank you again everyone...I'll update next week once we have solid dates/plans in place.

Thank you again...SI MOJO at it's finest!!!

AK-47 THIS SHIT!!

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7679881
default

 Deeply Scared (original poster administrator #2) posted at 12:13 AM on Saturday, October 15th, 2016

Hi everyone...

We got home about an hour ago. THe new drug was adminitereed at 10:30 this morning and my cancer still isn't cured , lots of blood work and tests...but my hope is high that this will help. It just has to...there is no other option I can accept!!

We have to go back tomorrow morning for more blood work and follow up visit. I suspect we will be in Houston and/or doctor visits even more than regular.

We stayed and the Rotary House last night which is directly across the street from MD Anderson and made it very convenient for us. And was super pretty

This drug is our hope for more time and some pain relief.

So, we stay hopeful but also realistic.

I'm tired

I love you all...your spirit and caring words are of deep comfort to us...thank you so much!!

[This message edited by SI Staff at 1:02 AM, October 15th (Saturday)]

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7685246
default

 Deeply Scared (original poster administrator #2) posted at 7:05 PM on Sunday, October 16th, 2016

Good luck tequila shots before my first trial drug treatment on Friday!!

Leave it to MH to make sure I have flowers

I have a couple Hello Kitty hats (shocker, I know!) but MH likes the white one the best, so that's the one I wore during treatment.

If I'm not at work, I mostly don't wear my wig...just cute hats around the house and if we're running errands.

Just figure, fuck anyone that can't deal with a bald 52 year old woman trying to save her life

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7686013
default

 Deeply Scared (original poster administrator #2) posted at 6:17 PM on Sunday, October 30th, 2016

I thought this would be a good time to do an update....its a long one.

I had my first round of the TD (Trial Drug) on Thursday, the 20th at the main MD Anderson campus. Overall, it's not much different than the first round of chemo back in May. MH and I had to wait ar least 4 hours for any type of reaction afterwards.

We went home that afternoon. On Friday, the 21st, we had to go back down to the main campus for lab work and my blood panel. Apparently my Creatinine numbers were high and indicating Renal failure with my kidneys. I was admitted into the ER right then and was up in a private room by dinner time. Poor MH...we had no idea I was even sick...I felt fine except my legs grew into trees trunks holding30 lbs of water I was retaining.

Saturday, the 22nd came and went and I layed in bed in excruciating pain that I was doped up for close to 48 hours. Monday came and I was still so much pain...I cried and cried and cried. Pool MH...he was so helpless and upset...so extremely worried about me.

One of my biggest fears on Sunday, the 23rd came true...I happened to lose the ability to urinate. My tumors had grown and started to press up against my urethra and pressing down on my bladder. I can't even describe the pain level. I felt like my guts were being pulled out and twisted around....absolutely no relief al all....just deep, to bone pain. I was called in surgery to install a catheter. Great

After surgery, more lab work had been ordered and now my heart rate was over 160 putting me in Afib ...all of this is happening so fast and medical teams in and out trying to sync pain meds, work my Afib issues, kidney failure and brand new catheter...still with me?

For the next few days the goal was to stabilize my pain level because it's nearly impossible to function. And it finally happened...after months and months of serious pain....not only have they reduced the amount of drugs

I have to take but have them synced perfectly so pain appears to be in the past..for most part. Knock off wood!!

MH brought me home on Friday, it is wonderful to become and surrounded by my friends and family and my stuff. I have been improving every day with strength and great attitude!! My neighbor loaned me her walker so I can move around our house with out fear of falling....which I did Friday and just about scared the shit out of poor MH.

So there is the most current update for you all, The prayers and cards and loving thoughts the have been sent us. Your generosity and love is amazing....truly.

While the tumors do appear to have gotten bigger,we are very hopeful with the new TD program I'm on.

AK 47 THIS SHIT!!!!!

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7696580
default

 Deeply Scared (original poster administrator #2) posted at 4:48 AM on Tuesday, November 1st, 2016

Lovingmyselfmore...

Thank you so much..I truly appreciate the referal, for sure.

I am super interested in any information you an provide...that would ve great!!

I'm starting to read up on John this evening

To everyone else...

So very grateful for you all.....thank you very much!

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7697672
default

 Deeply Scared (original poster administrator #2) posted at 11:16 AM on Tuesday, November 1st, 2016

(((((Hope & AN)))))

Thank you both very much

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7697736
default

 Deeply Scared (original poster administrator #2) posted at 1:20 AM on Friday, November 4th, 2016

Update:

My 2nd round of theTD (Trial drug) is rescheduled for this coming Wednesday due to my Cretin (sp?) level slightly too low.

So,totally disappointed today but at least I wasn't admitted back in to the hospital!!

All your prayers and love is so greatly appreciated....thank you very much!!!!

AK 47 THIS SHIT!!!!!

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7700316
default

 Deeply Scared (original poster administrator #2) posted at 1:24 AM on Friday, November 4th, 2016

(((Gaby))) Love you

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7700321
default

 Deeply Scared (original poster administrator #2) posted at 6:11 PM on Wednesday, November 9th, 2016

Walloped...

I'm deeply touched by your message above....thank you so much for telling me that!!

This has been a living nightmare for us over here for us, so knowing that you (and others) have benefitted from SI and any friends you've made here is just an awesome bonus

Thank you again Walloped...you made my day!

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7704382
default

 Deeply Scared (original poster administrator #2) posted at 8:29 PM on Wednesday, November 9th, 2016

(((Dragon)))

Thank you so much for your post too....it's very comforting to know that you and others are healing and benefitting from SI and the members . Are't we lucky to have such a great resource right at our finger-tips

One of these days...no more cancer!

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7704468
default

 Deeply Scared (original poster administrator #2) posted at 2:36 PM on Sunday, November 13th, 2016

Update

So this past Thursday for lab tests/blood panel at the main MDA ...then finally the TD was administered at 11:00am. After all of the tests were done it was close to 8:00pm...extremely long and exhausting day. BUT....the 2nd round of TD is DONE!!!!!

Fun little thing that when you're in the hands of any MDA staff and you're on a gurney(sp?) every time you're wheeling through the massive hallway system, the Nurse will cal out "Coming around" or "Coming through" which of course I could not resist yelling out all day as MH pushed my wheelchair for all my appointments.

It was awesome..MDA Staffer's and patients were laughing and high fiving me as I would round another corner. MH and I have a great time no matter what!!

Btw....I'm not in a wheelchair for daily tasks,etc. I was in the wheelchair yesterday due to so many appointments and time sensitive tests....much faster to get around then me walking, which is slow and steady due to the tumors growth on the outside.

So, hopefully we'll hear some news later this week. Thank you all so much...your help and love is helping us hang on!!!!

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7706523
default

 Deeply Scared (original poster administrator #2) posted at 3:09 PM on Sunday, November 13th, 2016

(((MUM)))

You're always here offering your support...thank you so much!!

"Don't give up, the beginning is always the hardest." My Mom:)

My tolerance for stupid shit is getting less and less.

posts: 210060   ·   registered: May. 31st, 2002
id 7706531
Cookies on SurvivingInfidelity.com®

SurvivingInfidelity.com® uses cookies to enhance your visit to our website. This is a requirement for participants to login, post and use other features. Visitors may opt out, but the website will be less functional for you.

v.1.001.20221122 2002-2022 SurvivingInfidelity.com® All Rights Reserved. • Privacy Policy