Gayle's Cancer Updates

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gaylejackson2
Posts: 2002
Joined: Tue Sep 08, 2015 1:13 pm
Location: Utah

Re: Gayle's Cancer Updates

Post by gaylejackson2 » Sun Nov 10, 2019 8:24 pm

As posted on November 4:

RS Church ladies have come & gone (she brought another with her). Part of walking was to try to calm down a bit, but I'm going to vent then maybe I'll cry. All emphasis is my own, and I'm just overdue for another round of grief & anger, but I feel like she is trying to get out of helping me as we're getting closer to holidays.
So we chatted for awhile, then RS Pres said that they would like to bring us meals on the day of my infusion, through the end of the week (first she'd said "We'd like to bring you some meals for a week after you have your infusions." "Oh thank you," says I, "because dh is working evenings & Saturdays, and older boys are in wrestling practice or working until 7-8pm each night, and I'm not yet released to do anything the involves stirring, lifting, pouring, chopping, etc.") ending Saturday night. THAT'S WEDNESDAY THROUGH SATURDAY this week. She said that surely "you & your children can figure something out for the rest of the time." Oh yes dear, let me just cobble something together to feed us, in all of my not able to stand or sit upright times unless I want to feel severe breast-area pains or have my belly swell--yes just watch me go ruin myself because YOU THINK I CAN!!!!
Then she says, "Since you can do some things, this is your last week for us getting rides for your girls home from school." I just looked at her, and said "Okay but I'm not released to drive yet. It's one of those repetitive motions using the upper body." She gave me the most blank look, then tells me I can find my own rides for my girls until I can drive again. Oh she also said that I need to ask for Physical Therapy to help me be able to drive... REALLY????!!!!!
Next she asked if the Dr had given me any indication of what the nausea will be like.I told her they had said that the nausea would be like the worst case of morning sickness ever, and that I should expect to feel ill most of the time, but that walking around and exercising helps (exact quote from Dr W's nurse "Don't give up that exercise regimen, keep going on it because It will help. Even lifting weights will help you."). Her reply was "I can't imagine it will be THAT BAD. My daughter-in-law's sister is going through Chemo just like you, and she said that she feels queasy for a few days then she's fine, so we probably won't get you any helpers since you'll be home alone anyhow, and you look really good so you'll probably be just fine." The other lady (RS Secretary) then says, "Oh you should just stay home from church if you're feeling nauseated. Walking around would just distract other people from the reason we're all at church."
On then RSPres wanted to talk about the hair loss-- her daughter-in-law's sister didn't lose hers, so I shouldn't do like my email said, and cut mine off. "I think it would be a big mistake." Well maybe it would be for her, as she has really long lovely curly black hair, but I'm not HER!!

Do you know??!! I don't know when all of the willingness to help me turned into this ______, this lack thereof, but I'm starting to feel a bit bitter, and yes even angry.
Last week at the Halloween dinner, she asked me to help bring meals for another lady in our church who is having back surgery tomorrow, and her recovery time is also 6-8 weeks. I looked at her then too, told her I couldn't as I haven't been released to do anything like that. Another blank look from her. "Well you look so good." My reply, "Just because I LOOK GOOD doesn't mean I FEEL GOOD ALL THE TIME, because I will will pay dearly tomorrow for all of this unsupported standing I'm doing tonight because I wanted out of my house, and to SEE people."
**I WILL take a meal or two to my friend, in a few weeks, with my family's help in making it, after the church ladies have started to peter out on helping her too.

ARGH!!! I Just feel SOOO ANGRY!!!!! And hurt!!! Why do people say they are going to Help then they back off because you LOOK SOO GOOD!!! (Maybe I need to go find leftover Halloween white makeup and wear some whenever anyone comes over, if I LOOK SICK maybe they will want to help again.)

gaylejackson2
Posts: 2002
Joined: Tue Sep 08, 2015 1:13 pm
Location: Utah

Re: Gayle's Cancer Updates

Post by gaylejackson2 » Sun Nov 10, 2019 8:27 pm

My reply to witchy RS woman’s diatribe, which I made on Facebook, oh all those poor people who got shouted at by me in all capital letters:

Facebook post 11/4/19 3:34pm

I HATE CANCER!!! IT'S A HUGE UNFATHOMABLE GIGANTIC BULLY!! But what I HATE WORSE than the CANCER are the damned comments that I keep getting!!! (If any these apply to you, maybe you ought to feel a wee bit ashamed, because they really don't uplift me and actually make me feel sadder; and while I might see a few faces in my mind as I'm typing, This Isn't Aimed at Any Particular Person!) YES I AM ANGRY TODAY AND SAD, so very sad that I've been crying for the past Two hours!

Do you know the comments I hate hearing the most???
** "Oh You LOOK SOO GOOD!!"
** “Call me if you need Anything! (or let us know how we can help?)"
** Oh and my all-time personal favorite, "Oh my daughter-in-law’s sister's friend's aunt's nephew’s neighbor went through Breast Cancer too, and She said it's not that big of a deal. Even the chemo isn't anything major as she was only sick for a couple of days after her treatment, then she was back to her normal duties. Oh and she didn't lose Her hair either. So I KNOW that you're going to be just fine."
••And...

**SERIOUSLY??!! Of course I look good!!! I've been following my Doctors' orders of taking it easy, walking a little, resting A LOT (which is getting Irritating, by the way, and harder to do as I Begin to feel marginally better each week), BUT I still hurt A LOT!! I FEEL a HUGE, significant amount of chest, breast and belly pain EVERY DAY!! I've been Trying my Best to do what I'm Supposed To Do--which does involve NO COOKING, NO DRIVING, NO STIRRING, NO POURING, NO LIFTING MY ARMS ABOVE SHOULDER HEIGHT, NO CHOPPING, NO STANDING W/O MOVEMENT, NO SITTING UPRIGHT WITH MY FEET DOWN, SLEEPING SITTING UPRIGHT, NO ROLLING OVER, NO TWISTING, NO REPETITIVE MOTIONS INVOLVING THE UPPER BODY OR BELLY (If you're not sure what “repetitive motions” means, ASK GOOGLE)!!!!! Yes REALLY ALL THAT!!! PLUS My Doctors & Medical Team have ALL been saying it too!!

**Oh so now you want me to Call You IF I NEED ANYTHING?? Or let you know If I Need Help??? Well, what about those times I HAVE ASKED FOR HELP, and been rebuffed for the simple reason of Oh You LOOK SOO GOOD, or the even reason of “Oh not right now. Its time for Your family to step up and help you!!! Who the H3LL cares how I look?? Have you even bothered to ask how I am? How I felt at 3am, 5am, (or midnight last night) when I awoke this morning to agonizing pain from my chin to my belly? And Who put you in Charge of My Family, and What Makes You Think THEY AREN’T HELPING???!!! Have You called any of us just to chat? Are you one of the few who have sent me a card, or sent me flowers, or brought me dinner, or offered to take me shopping, or stopped by for a visit, or wrote me a sweet message on Facebook, or Did call, or sent me a text message? Oh don't worry, I'm not keeping a LIST, but I also Should Not have to Call you, or "let you know." Somehow I think most of us have been home from illness, or surgery, or having had babies, You Can use your imagination to DO SOMETHING (whether for me or my family because they are needy in more ways than just food too) rather spout off useless drivel.... BECAUSE I likely Won't Call you to Let You know, it's just Not In My Nature! However, You Can Count THIS Post!!

** Oh Yes! To My favorite comment of This Stupid Cancer Journey of MINE!! WELL, Okay So JUST Because you know someone Else who has had Cancer, and they have TOLD YOU all about their experiences, THAT DOES NOT MAKE YOU AN INSTANT EXPERT on how CANCER AND CHEMO are going to AFFECT ME!!! And DO NOT push someone's podcast, or book, or herbal/alternative treatment methods AT ME either!!! My cancer battle IS MINE, And IT IS DIFFICULT ENOUGH without YOU ASSUMING that someone else's methods, or experiences, or cancer journey IS what I Should be doing or going through! You Cannot say that is BETTER THAN WHAT I AM DOING!!! Because UNLESS YOU HAVE HAD CANCER, you have NO RIGHT TO SAY ANYTHING!!!!

••And finally, if this applies to you, or IF YOU OFFERED HELP TO SOMEONE, and DID NOT FOLLOW THROUGH, or Backed Off with No Real Explanation, SHAME ON YOU!!! OR if you offered help,and they said, not yet, but oh yes please in ______ days/weeks, and You Did NOT Follow Through, More SHAME ON YOU!!!
***************
Edited to add on 11/5/19 2:04am:

I’m not trying to get anyone here in Facebookland to do something, Or Feel Sorry for me.
Rather, This is Me venting my emotions brought on by Yet Another round of the Grief Cycle because of Cancer’s Bullying Effects, And from someone’s very poorly chosen words in during a visit yesterday.
Really folks, I KNOW that ALL Of Us Are Struggling with scary and hard things, that can be as difficult for you to deal with, as this Damned Cancer is For Me!! BUT I would Hope that All of us will look around, and see who among us is suffering and hiding their pain behind a mask of cheerfulness and a bright smile. Please help the ones around you!!
Last edited by gaylejackson2 on Mon Nov 11, 2019 12:31 am, edited 1 time in total.

gaylejackson2
Posts: 2002
Joined: Tue Sep 08, 2015 1:13 pm
Location: Utah

Re: Gayle's Cancer Updates

Post by gaylejackson2 » Sun Nov 10, 2019 8:29 pm

First email after chemo started Nov 6, 2019:
———
Dear Family & Friends,

Thank You all for your continued support, and prayers. I have felt the prayers, and I felt the presence of the spirits around us, as well, who are supporting us.

It has been a few days since my first chemotherapy treatment. How to describe the last few days?!

Well here are my descriptions, and my apologies if you find them a bit more graphic than anything I’ve written in the past. I do not feel good, and I’m no longer going to try and filter that out either. I have not felt particularly good over the last several weeks and months either, but I was still trying to remain more positive and upbeat about my situation than I am now. However this chemo is stripping away all pretense, right down to the bare bones of the actual situation. I Do Not Feel Good!!!

We got to Huntsman, and I checked in. We waited until they called for me, and we walked back to the place where I was going to have my Infusion, Pod 4, #4C. My view was towards the west across the valley, to the mountains. I also had an excellent view of the helicopter landing pad on top of the parking garage at University Hospital next-door. My nurse was named Jay and she kept blowing up my veins, so she had to get a fellow nurse to insert my IV, so they could draw blood labs, and get me started me on some saline. Then they gave me a powerful anti-nausea medicine, that is a cousin to Zofran.

About then I discovered I had a whole new crop of hives along my belly scar, and on my chest. I have been having hives like this for several days, and have have been sending pictures of them to Dr Panucci‘s office as well. There was a particularly large hive, but had me concerned, and so Jay called up to Heidi in Dr Panucci’s office and she came down to have a look. Heidi didn't think it was worth worrying about, but she said to use a topical Benadryl cream on the hives and keep an eye on them. Then Jay added a powerful steroid to my IV line, which seemed to help the hives eventually go away.

The results from my labs came back as good, and they sent that information to the pharmacy to have them mix my chemo therapy. My chemo is called Docitaxel (Taxotere) Cyclophosphamide, or TC for short. The nurse hooked up first the bag of the docetaxel and it dripped in very slowly for about an hour and a half. First I felt a numbness and tingling in my left arm, then my arm went cold, next came an intense pressure headache, then I had shortness of breath, which all gradually faded away.
I did end up with a very nasty aftertaste in my mouth. When the first bag was empty, the nurse pushed in some saline to make sure that all of the T was in, then she hooked up the C bag which would run about 30-35 minutes. Five minutes after C started dripping in, I started feeling intense pressure along my belly scar, about an inch and a half on either side of the scar. That same pressure, or pain rather, continued all during while that bag of chemo was dripping in. I also had gotten the same sort of intense headache, and shortness of breath that I’ve gotten from the first bag of chemo. I later discovered that intense pressure around my abdomen had jumpstarted my menstrual cycle, Which has just been one more unpleasant addition to my week, especially as the menstrual cramps have actually felt like labor pains. Extremely unpleasant!!

(I asked you all please excuse me, if my words may not seem the same as they usually do. Because of the chemo, I have experienced intense bone and muscle pains, to the point where I cannot type because my hands and wrists and arms hurt so bad!!! So, I have begun using my voice recorder app on my phone. It does not always pick up exactly what I say, and sometimes I am not able to remember to fix what I was trying to say, though I am trying to get it as accurate as possible.)

After we left Huntsman, we ran some errands then left to drive home. I did experience a couple bouts of nausea, but the Compazine anti-nausea medicine they gave me helped stifle that nausea fairly easily.I was mainly very exhausted, no surprise there though, for that day.

The next day Thursday, I experienced severe diarrhea. The last time I had diarrhea this bad, we had been visiting my in-laws in Oregon, and I hope God I’m gluten and probably too much sugar. But that was then and this was just a few days ago, I drank Gatorade like crazy and water, and walked from my bed to the toilet, back-and-forth all day long.

Friday was not nearly as bad as Thursday, while I still had some diarrhea it was waiting for which I am extremely grateful. I attribute the lessening of the diarrhea to the mini prayers which I know I’ve been offered on my behalf, and which I was also praying diligently for the listening of the diarrhea.
Friday is also the day when the pain set in HARD!!! The horrible, intense, bone and muscle pains! This is not to say that I had not already had pain, I had had some pain on Wednesday evening and Thursday evening, just nothing like I began to experience on Friday. First it was my hips, then along my femur’s, then as the day moved along and settled in my shoulders and move down to my elbows. It affected the muscles and made them feel like they were cramping. The bones felt like, and feel now, like there is a line of ice running along the bones themselves, A line of ice the alternates as being fiery hot. Back-and-forth faster than you can even really think or say the words about them. It is an intense pain, that never seems to go away, though it is somewhat lessened by walking around a bit, or sometimes it is lessened by laying and holding still. It just never fully goes away.

I’ve been asked if I have been given any medication for this. No! I’ve been told to use Tylenol and Aleve, and a call after three or four days if the pain does not reduce. Jay the infusion nurse at Huntsman, told me to get Claritin to use in conjunction with over-the-counter pain meds, as somehow there’s something in it that helps work together to lessen the pain. If it does lessen the pain, it is a microscopic amount that I have not yet recognized.

Friday was the day when the nausea hit full force. I typically start out my morning very early eating something protein-based, and egg or crises, as well as having one Zofran. A few hours later I have another breakfast, and as long as I eat something every 2 to 3 hours I seem to be OK. However I decided chemo has no regular bounds like morning sickness did, nausea hits me anyTime of day. Anywhere from mild to medium hard. So far I can combat it with warm tea or food, Zofran, or Compazine. A little bit of movement helps keep the nice you’re down, but sodas sometimes laying down. It is never the same every time.

I should also mention that I’ve had a number of skin rashes up here, on the front of my neck and behind my ears in the back and neck my neck, and on my back, plus sores in my inner cheeks and on both sides of my tongue. Then there's the weird smells too. Whenever the furnace kicks on, and I am in my bedroom, I smell the strange Dusty or Dusty/sour/bitter smell that tends to make my knowledge arise. I get up and walk around but I sometimes still smell the same scent on my blankets as I’m going to sleep, not a fun sensation to have at this time. I’ve also had some unusual reddening on the undersides of my breasts, enough so that I will be going back on Tuesday, November 12, to have a visit with Dr Panucci and his staff to make sure that there is not a infection there. Infection is a scary thing with cancer patients, especially after they’ve started chemo because there immune system is pretty well gone.

Someone always seems to ask me about the hair thing, and as I mentioned it in the last email, I feel like I should touch it here as well. In the last two or three days since chemo has started for me, my scalp has become very tender and sore. I am trying to not even brush my hair now, or If I do, then do so very very gently, because the hair pulling on my scalp makes me want to cry, as the pain is very much, But maybe not as much as the bone and muscle pain, it is still obvious to me. I can feel my scalp hurting and tingling all the time! At my last shower, yesterday afternoon, my hair has been feeling brittle and dried out since before my shower, and but then it did this weird stretchy thing in the shower where it seemed almost stretch beyond the link that they don’t normally should stretch that was point it would normally break, but this did not break. It also clump together and did not wash out like it normally does; it felt instead like how your hair feels when it is very oily, but it took a long time to wash and get it clean. I can feel my scalp hurting and tingling all the time. At my last shower, yesterday afternoon, my hair had been feeling burnt out before my shower, and then did this weird stretchy thing in the shower where it seemed almost stretch beyond the length that it normally should stretch that was point it would normally break, but this did not break. It also clump together and did not wash out like it normally does it felt instead like how your hair feels when it is very oily, but it took a long time to wash and get it feeling “normal.” I don’t know what normal is going to be like for me, but I am still planning on cutting my hair, and it will probably happen in about a week maybe longer, maybe shorter, I haven’t decided yet but I’m looking at next Sunday, November 17 as the day to do it. I have decided to cut off some tiny locks first and braid them, so I can look at them and hold them while I go through the time of no hair. I have also decided to let my children help me cut my hair, and Andrew will be on hand to help with the final Cutting. Basically I will give my little girls a pair scissors each and say it’s time to cut mommy‘s hair. I plan to sit in my garage wrapped in a towel, or if I can find it, our barbers Cape. I will tell them to be very careful and to start cutting Mommy‘s hair. My goal is to get to about a 1/4", so I will still have some hair to protect my scalp, and give it some warmth, but short enough so that the shock of the hair falling out will not terrify my small children, or even myself. THIS IS NOT A HAPPY EVENT, I would not be cutting my hair if I did not know that my hair was not going to fall out. I don’t need anyone to tell me what kind of a mistake they think it is just because of their relative, or someone they know who had cancer, did not lose their hair. Chemo affects every person differently, but one thing I have been promised by God is I would lose my hair if I did have chemo. AND my doctor has told me I will lose my hair with this TC chemo. I choose to believe these two over someone else’s opinions!!

Fast forward to today, it is Sunday. I went with my family to our stake conference, and sat in a corner on a bench with several pillows propped up. About halfway through the session I started feeling extremely nauseous. I combated it with Zofran and sucking on mint lifesavers. It was wonderful to hear the words of the Lord, and yet be somewhat comfortable. However when I got home, my belly was significantly swollen, and I know it is because of the lack of motion, and also the angle which I was sitting. I only got up and walked around once during the conference, during one of the songs, in those 2 hours. If I’m not able to get up and move around a little bit about every 20 or 30 minutes, then My belly does still swell, and then my chest will hurt (and the nausea increases).

I thank you ALL so very much for your prayers, I have felt them very much this during this past week. Monday I went through Another cycle of grief and anger, that was triggered in-part by some things that someone said to me that afternoon, and also by some things That my doctor’s nurse had said that morning (I will touch more later on the things that my Dr Panucci’s nurse said to me, but I refuse to dwell on them, or think about them right now, I only want to get through the chemo. Besides they pertain more to things, and doctor visits, that are in my future.), that upset & scared me. I raged & shouted around my house, my puppies whined in their crate, and I cried A Lot. Cancer hits everyone differently! Chemo hits everyone differently, though many of us experience the exact same side effects.

How we react to things, is made up from the way we are, none of us will react the exact same way to the same circumstances in our lives. We are all different, God made us that way. I mention this, because many people over the past several months, have said things to me, they mention how all their friends girlfriends brothers dogs neighbors former owners whatever person, some person had cancer and this and this happened to them so because of how that person reacted to cancer, that’s how They think I should react to Cancer. Then I get told about people dying from cancer, that is so NOT helpful either!! The ONE CONSTANT thing about ALL cancer survivors, (and while I don’t have, or did not have, cancer is bad as so many other women whom I have gotten to know through my support groups), we all need to hear the positive, not the negative!! I don’t need to hear about people dying from cancer, I’ve already seen plenty of that. I don’t need to hear about someone else’s experience with cancer, I’m still struggling to come to terms with my own cancer!

Please oh please friends and relatives, please look around you find those who are suffering and struggling, not just from cancer, but also from other hard experiences in their lives, see what you can do to lift them up. All of us need someone around us who lift us up, because the adversary is willing to drag us down and make us see the negative aspects of life, all without us even leaving our own bed. Please,Oh please, look around you and see how you can find who needs your help!

I am praying for you, my many friends and relatives, and I love you all. Thank you all so much for walking with me on this journey, and please keep holding on. I will still need someone to cling to, as the pain from the chemo, and the emotional trauma and stress are still hanging on tightly to me, and as my journey is FAR From being OVER (I might only be 12-15% through at this point).

With all my love and deepest gratitude to you all,

Gayle Peel Jackson
Last edited by gaylejackson2 on Mon Nov 11, 2019 1:53 am, edited 5 times in total.

alliesmama4
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Joined: Sun Aug 30, 2015 10:10 pm
Location: Southern IL

Re: Gayle's Cancer Updates

Post by alliesmama4 » Sun Nov 10, 2019 8:42 pm

gaylejackson2 wrote:
Sun Nov 10, 2019 8:22 pm
Though it may not be appropriate, I am going to post or, rather move, the Wenchy RS Woman’s diatribe from last Monday here, then I will follow it with the post that I made on Facebook on Monday, which a few of you have seen. Then I am going to post my latest email, that will go out tonight or tomorrow,. I have written, or rather spoken, As the chemo has generated horrible pain in my joints and muscles, affecting every part of my body, but most especially my hands and wrists which makes it difficult to type anything, And also keeps me from knitting much. ☹️☹️
Gayle..So sorry to hear what you are dealing with.. Still keeping your in my thoughts and prayers. Did they say how long the pain would last after each session or is it on going during the whole treatment sessions? I cannot imagine how much you are suffering. You are a strong woman but you are also human in need of a lot of comfort and love from those around you. I do hope they are able to help you. Just know I am sending you love and warm and caring thoughts. Vent here as much as you need to.
Love and very gentle ((hug)) your friend, Janet
Last edited by alliesmama4 on Sun Nov 10, 2019 8:54 pm, edited 1 time in total.
Janet Alliesmama

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Jackielou
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Re: Gayle's Cancer Updates

Post by Jackielou » Sun Nov 10, 2019 8:46 pm

Oh Gayle my heart is breaking for all you are going through.

floridacatlover
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Re: Gayle's Cancer Updates

Post by floridacatlover » Sun Nov 10, 2019 9:05 pm

Gayle, many, many (((Hugs)) for you. You continue to be in my prayers. I’m sorry that the chemo has hit you so hard. I do believe it is good to let out all of your feelings and your raw emotions as you’ve done here and on your Facebook page. I’m glad that you were able to go to church today and never hesitate to express your love for God and Jesus openly. We are all with you here and love you.

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