Sharing Another Family's Thoughts About Cancer

From Crunchy Chicken's blog in the hope that her words will help those around Priscilla who are with her in this battle.

What to expect when your loved one has cancer


Kyra loves her snowman! She taught Megan how to say "pancakes" last night and Priss had a riot on her hands as they chanted "Pancakes for Supper!!" They enjoyed their pancakes with apple sauce...yummy!

Thank you from Down Under for all your positive comments, prayers and thoughts,
Love from Sue
xxx

Lots to say.........

So lets start with the BIG news............. About a month and a half ago, DH and I found out we were expecting...... Last news I ever thought I would be posting I can guarantee.... As you may or may not know, I am very infertile. Both my daughters were conceived on Clomid. On many rounds of Clomid and depressing months of big fat negatives. To be honest, after 5 rounds with the last one, we were ready to give up and the test finally showed up positive!!!! We were happy. Plus doctors said that chemotherapy and radiation would void any hope of further children. We were OK with that, we have 2 beautiful girls, and to top this all off, we were using condoms as extra precaution.... So, you can all imagine the huge curveball that has been thrown at us to start with. Had an ultrasound about 3 weeks ago and baby is doing well and healthy. Very good news... Now as to if we can keep it???? Still up in the air, so positive thoughts and prayers are being requested.... In the department of chemotherapy and radiation, it has been enough time. But with today's new info, we are not sure...Doctor called me today to say biopsy results were in and contrary to what Toronto "assumed" the tumor is not dead...... It is alive and active.... Big punch in the gut there... They are unsure if this type of cancer is hormone sensitive as research has never been done on it due to the fact that children don't get pregnant and have an overflow of hormones, so they do not know if the tumor will start to grow faster or not, I guess we are on a watch and wait....... Argh! You can not believe how frustrated I am with Toronto and the fact that I feel like they are using me as a guinea pig.... How dare they assume things... The only reason the biopsy was done, was because when they told me that they wanted to take me off the narcotics I told them that it would not work because I am still in severe pain. So when I told them that they said that they decided to do more testing "in case" the tumor was still active..... Now Toronto is going back to the drawing board and suggesting and looking into surgery. I am seriously contemplating getting a second opinion, because at this point I feel like I have no reason to trust anything they have said or done.... I realize I am a rare case, but shouldnt they be covering all their bases? And not assuming things????? Anyways.... We are currently at 11 weeks gestation with an expected due date of August 24th.... One week after Princess Megan's birthday.... Lots of big changes happening for is.. maybe a 3rd child.... Kyra will be starting school in September. Possible surgery and maybe even chemo... Who knows what the future holds but seriously praying that things start falling into place and that 2013 is nocer to me than 2012.

Wishing all of you peaceful and happy times and trust me when I say this, never ever miss an opportunity to tell someone you love them.....Look at my situation its rough and when people tell me thry love me it definitely helps me get through the day.. Hopefully i can get my mind to shut off and get some rest.

Priscilla

Toronto outcome!

Today was not what I expected, although Dr. Nicholas did mention that it is what thy may tell me...

Started the day off having to drink a barium drink that looked like milk and tasted absolutely disgusting. and it's a huge glass unfortunately... They even give you a straw.. I dont know who in their right mind would even use a straw... UGHHH. Cat Scan was quick and went well but then barium started giving me side effects like nausea and horrible cramps and diarrhea. Wasn't fun. Came back to the hotel after appointments were done and slept 3 hours which I needed.

Next we went to appointment with Dr. Gupta for 1130. Didn't see her till about 1230 and she came with Dr. Gladdy so 4 pm appointment with her was cancelled. If we would have known we could have went home tonight but unfortunately my train tickets are non-transferable. This is the news they gave us, the tumor has gotten smaller and is less active than original scans (YAY!!!!!!!!!!!!!!). Very happy about that. But the bad news, (some of you may not think it's bad but I will explain why I think it's bad) is they don't want to do surgery. They are deeming it too dangerous. They want to do monitoring scans every 3 months only. The problem I have with that is that there is still "live" cancer cells in my body. Even though they are not "active" right now, they are still in there... Plus, I am still in a lot of pain, and they want me to try to come off the pain medication. How when I am still in pain????? They are trying me on gabapentin because they think it may help with the nerve pain part of it. They also do not believe that I will ever get full strength back in the left leg due to the extensive damage to the femoral nerve and wants me to do some physio therapy and start using a cane :(. I still get weakness sometimes where my leg totally gives out on me and they said due to the radiation to my pelvic area, the chances of hip fracture are a loooot higher with radiation. Even a little fall could cause major damage. I don't want surgery, it scares me but at the same time, I'd rather have surgery then know that I have live cancer cells in my body that may flare up at any point? What would you do in my situation? Dr. Nicholas mentioned to me that if they did not want to do surgery that we would definitely look for a second opinion... I think I may look into that in the New Year and just take a break for now or I may book an immediate appointment. I have so many questions, but felt so rushed here. At least with Dr. Nicholas I feel like I can ask questions and get answers, besides I trust him more than any of the other doctors I have worked with, Don't know why, maybe because he seems to be more caring? He did say if I felt I needed an appointment before the New Year to go ahead and make one. I think I may. Just to help put me at ease. Answer some questions. I will keep you guys updated.

I am not sure what to do, one on hand, I was really hoping for surgery even though I was scared. This "lump" is constantly causing me pain and it's very uncomfortable. My back is always in pain and I always feel tired. The lump also affects my appetite (or lack of) because its pushing against my stomach. If it was totally dead, I would feel a lot less worry and anxiety if they were saying lets leave it in. I would live with the pain...

Anyways, Mom and I went for a nice supper out and a little walk. Was nice. Now back at the hotel relaxing and heading home tomorrow. I miss my girls and my hubby and my bed and my city :)

Good night
Priscilla

On our way to Toronto

Well, we (my mom and I), are currently sitting on the train to Toronto. Yay for free Wi-Fi :)

For those who don`t know, I have had a very rough weekend coming on to this trip...
My dog Dubby, my extremely loyal companion for the last 12 years had a stroke on Thursday evening and lost complete feeling/use of his back legs... I prayed and hoped that he would recuperate from it, but after not being able to get up at all and not having went to the bathroom, my husband and I made the very hard decision to do what was best and end his suffering.... Hardest decision I have ever had to make... This dog has been the one constant thing in my life for the last 12 years and knows more secrets and things about me than anyone in the entire world!!!!!!! I saved him from someone who was hurting him when he was 6 months old. They were locking him up in a cage and hitting him all the time. When he first came into my life, I didn`t really want him. I was scared of Rottweilers because of their reputation for being aggressive, but I fell in love with the little guy and he helped me through a lot. I will never forget all the things he doesn`t even know he helped me through.  I am hoping he is happy up in Heaven with his mom and his brothers and sisters. And like the poem said that Marion gave me at church yesterday, He is playing at the Rainbow Bridge, and when I go up there, he will run up to me so excited and we will cross the bridge together. No more pain, no more suffering. May he Rest in Peace. Like my husband said, he wasn`t just family, he was also our friend...and he will always live on in our hearts...

Tomorrow is a busy day. Fasting Cat Scan at 9 am, Chemo Oncologist, Dr. Gupta appointment at 11:30 am and an appointment with Surgical Oncologist Dr. Gladdy sometime in the afternoon. I still have to call tomorrow to find out what time the appointment is at because I never got a call back to confirm the time. May be too tired to post tomorrow the results of the day but will try to do a quick post. We are sleeping at the hotel again Tuesday night as I know after the long day I will be way to exhausted to travel another 6 hours home.

 Thank you everyone for your positive thoughts, messages and prayers

XOX

Priscilla

5th Toronto Trip scheduled....

Hello everyone,

I got a call this morning asking if I was available to go to Toronto for a few days next week. I will be going on Monday night and returning Wednesday evening. I have appointments scheduled for Tuesday with Dr. Gupta (chemo oncologist) and Dr. Gladdy (surgeon). On Wednesday I will have a CT scan there.. Not sure if this means I am getting surgery or chemo but I will definitely know more once we go to Toronto. Looking forward to the trip...

I want to give a special thank you to my biological mom for offering to come with me, the anonymous donation from the church that will pay for meals and taxi, Cornwall CAS worker Emily Stewart who is taking care of the transportation costs and Kyber Outerwear bosses, Gina and Todd, (My job that I miss so much :( ) for hotel accomodations. Without you guys this trip would not be financially possible from my end.. You guys are great!!!!

Thank you
Priscilla

One year ago.... Nov 24, 2011

One year ago  (November 24th, 2011), I got diagnosed with cancer...... I remember that day so clearly..... The night before, I went to the walk in clinic at my doctor's office with Lanna and Will and the girls, just to get the results from my ultrasound because I did not want to wait for an appointment... I remember the doctor reading the words out loud. Large mass in retroperitoneal space measuring 15.1 cm long. That night, he told me to go to emergency, with the note he had given me to get an emergency CAT Scan. I was scared...... I'm still scared....and probably will always feel a little scared. The next morning, I dropped Kyra off at her nanny's and as I was still breastfeeding, I took baby Megan, then only 3 months old with me to the Queensway Carleton Hospital, with my doctor's note and Lanna and Anna met me there and waited the day out with me. Cranky baby and all, I was told I could not breastfeed for 24 hours after scan and was not impressed. Lanna and the nurses ran around the hospital trying to find baby Megan formula and I cried thinking it was not fair that I could not feed my baby girl because of a stupid test..... Little did I know that would be the least of my worries for the next little while... Spent many hours at the hospital waiting for the results of the scan and Lanna had to leave for a while to bring Anna and her girls home. As Murphy's Law is always there, as soon as she left, the doctor called me in to share my results. He asked me to go in a private room to give me the results and told me that I needed to put the baby down before he spoke to me because it was serious... At that moment I knew that I would not be able to handle the news alone and I asked the doctor to wait until my support was back. I rushed to the phone and called Lanna and said " Please hurry, it's bad news and I need you". Lanna showed back up in less than 2 minutes. We went back into the little private room and I put baby Megan down in her car seat and Lanna and I sat hugging on the exam table and listened as the doctor said the C word.... We both broke down into tears and I have never felt so scared, shocked and fearful in my life!!!!!!!!

Then the tumultuous appointments and hospital visits started.  4 long rounds of chemo, 2 lengthy hospital stays due to infection, 4 blood transfusions, 25 radiation treatments, 4 trips to Toronto and scans upon scans upon scans later, I am here today. Still waiting..... still alive..... still shining....... still praying.... still positive.....still fighting...

In this year, I've celebrated baby M's First Christmas, First Easter and First Birthday (August 17th). Watched her learn how to sit, how to crawl and now how to walk.
I've also celebrated miss K's 3rd birthday (January 10th, 2012) and watched her grow into a beautiful little girl, who is so in love with her mama and is my greatest little helper.

Just goes to show you how much can be thrown on one person's plate that they have no choice but to handle.

I''ll tell you this, there are days when I don't feel so strong, so positive, or so happy, but I'm still here and still fighting and will continue to fight until the end....

This week I've tried to contact Toronto twice to no avail...both doctors that I have contact info for are on holidays until next week. I'm getting frustrated of the constant waiting, but at the same time enjoying the break from hospitals, but it's hard to keep going, and always wondering what the next step is. I want to enjoy my holidays with my girls and have a bit of a clue of what is happening before the holidays come upon us.

What will I write next year when I hit this anniversary date? Will I ever forget this date or will it always be engraved in my head like it was yesterday? Only time will tell... But for now.. Positive thoughts, positive prayers and positive smiles..

Peace and love to everyone,
I hope that everyone enjoys the holidays coming up

XOX

Priscilla

Thank You!

Hi everyone,

I really want to thank everyone that has been leaving comments. Your encouraging words really help me get through this... Sometimes late at night when I am feeling down, I log on here and read all the positive notes of love, support and encouragement. I know I don't always post thank you's or replies to the comments and I'm sorry, but these do mean the world to me!!! I love hearing from everyone and you can feel free to email me personally if you do want a personal reply. pearlz347@hotmail.com.

Also on another note, I've had a lot of questions lately of people asking if they can share my blog with this one, or that one...Please, feel free to share this blog with anyone out there who you think may benefit, or just wants to read it. It is an open blog and everyone is welcome to read it!


Much love,

Priscilla
XOX