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

Latest News

Hi everyone,

I know this post is long overdue and sorry for making everyone wait..

- After the last Toronto trip, things were supposed to proceed quickly, but unfortunately they didn't. My case has a new person working on it now. A doctor from Sick Kids Hospital in Toronto who is a neuroblastoma expert. I can't remember his name at the moment???  He looked over my images and believed that the tumor may have been dead!!!!!!! I was scheduled to get an MIBG scan. Because of the rarity of this scan it did not get scheduled until the end of October as they need at least 4 people scheduled to do the scan. What a stressful 2 months that was!!!!!!

Got the results of the scan today. The tumor is not dead :( BUT.... It is less alive then it was originally!!!!!!!! To me that is great news, Even though the chemo and radiation did not shrink it, it did diminish the active cancer cells :)  I a not sure where this brings us for next steps, but I am happy that we are going in the right direction.

Now we wait again. Dr. Nicholas will send the results of the scans as well as the images to Toronto and we wait from there. I am planning on enjoying my holidays happily knowing that I am slowly, but surely beating this :)

Hope everyone has great soon to be holidays and I will update when I know more.. Thank you

Priscilla

P.S. The smoking battle has not been won yet.. But I am getting there. Slowly but surely.. It is a hard battle

Toronto trip August 28, 2012

So hubby came with me to the latest Toronto trip to see Dr. Rebecca Gladdy, the surgeon who will be in charge of my surgery. We left our house at 9 am and arrived safely to Princess Margaret Hospital at 215 pm. we weren't scheduled until 345 pm but it was nice to arrive early. We registered at the desk and were called in to a waiting room immediately. We met Dr. Barr, who is Dr. Gladdy's assistant. He went through the general questions, like how are you doing?, how's the pain? etc, etc. Then we met with Dr. Gladdy, she went through the scans that I had brought on CD from the hospital, the latest CT scan and MRI images. Well, the bad news was that the doctor in Ottawa, who wasn't actually a doctor but a resident had told me that the tumour had shrank. Well, I don't know where she got her information from because when Dr. Gladdy went through the scans and the reports, there had been no change whatsoever. That was the reason why I was depressed and crying yesterday. I have done 4 months of chemotherapy with no change and then 1 month and a half of radiation with no change.  I have realized that I need to take my health into my own hands. I have a few things I am going to start with, and I want to thank Shanna for helping me figure them out yesterday and giving me a shoulder to cry on. I realllllllly needed it. Number 1 goal is to quit smoking. I am setting my quit date for September 5th. The day after my birthday. I know it will be difficult, but I need to do this for my children and for my health. Number 2 goal is to start meditation and yoga. I have other goals as well but will post them as I am ready to.

Got offered two options, first option is an experimental chemotherapy drug called crizotinib. My tumour has ALK mutation, which is present in 10-15% of familial neuroblastoma cases .Here is some information on the crizotinib http://labeling.pfizer.com/showlabeling.aspx?id=676.  It isn't as harsh as the last rounds of chemotherapy and the side effects do not include hair loss which is good news for me. There is still the regular side effects such as nausea and vomiting, which I am not really keen on.... I've lost 49 lbs so far during all these treatments and although the weight loss is welcome it is not the proper way to lose weight as chemo weight loss is 50% body fat and 50% muscle loss. I was 190 lbs when this all started and am down to 141 lbs and still losing 1/2 to 1 lb a week. My appetite is non existent.

Second option is surgery. Although surgery will happen no matter what, Dr. Gladdy would really prefer that the tumour diminishes in size before they go in. But at this point I am not sure what I want to do. I am scared of doing chemotherapy again, although this time it would be a tablet and not through iv infusion. There is a good team of doctors set up to work on the surgery. So far I have 3 doctors, Dr. Rebecca Gladdy, who will be the general surgeon, Dr. Peter Ferguson who will be the orthopaedic surgeon, and Dr. Tom Lindsay who will be the vascular surgeon. There may also be a neurosurgeon involved depending on the complexity of the tumour attachment to the spinal cord. The general surgeon's role will be mostly the debulking of the tumour as well as anything that has to do with bowel area if there is attachment in the bowel, she will take care of that, the orthopaedic surgeon's role will be to try to save the femoral nerve, which at this point does not seem like it will be salvageable due to the symptoms I am already having in the left leg. I have left leg pain and weakness and numbness, but if anyone can save the femoral nerve, Dr. Ferguson will be the one that can do it. He will also take care of the spine and spinal cord if it is not too complicated for him, if not, a neurosurgeon will be involved. And lastly, the vascular surgeon's role will be to take veins from my legs and replace the ones they will have to remove from the tumour area as they are attached to the tumour. He will have to do a vein mapping procedure to mark which veins he can take from my legs to replace the ones they will remove. Dr. Lindsay is one of the senior vascular surgeons in Canada. I feel like the team that Dr. Gladdy has put together is one of the best teams I could have working on me.

The appointment ended at 5 pm and we decided to sit down at the diner and have lunch there as we did not want to try driving in rush hour Toronto downtown traffic. We headed out at about 6 pm and arrived home safely at 1130 pm. It was a very long day and I was very glad that Will came with me.

The rest of my cancer care will now be done in Toronto as there is nothing left for Ottawa to do. So in the next little while until surgery there will be a few more trips to Toronto. We are aiming for Sept 10 and 11 for the next trip to meet all the surgeons as well as having a pre-operation CT scan with all possible angles. It will be a 2-3 day stay to get everything done and my mom Suzanne will be coming with me for this trip. We are looking to get accommodations at Princess Margaret Hospital Lodge and hoping that the price is not too steep. I have a doctor's letter now stating that I need an assistant for travel and that helps as VIA will give my assistant free travel fare. If anyone has any other suggestions, such as cheap hotels or travel fare please let me know as we will need it.

Please continue to keep praying and having positive thoughts. And keep posting your uplifting comments. I love to read them here and on Facebook. I love you all and thank you

XOXOX
Priscilla and family

1 day of radiation left....

So, I have 1 day of radiation left. I've been throwing up a lot the last couple of days and feeling extremely exhausted.. But I am soooooo close to the end.

I have an MRI scheduled for August 7th for final imaging to see what this tumor looks like.
Last I heard it was down to 10 cm from the original 15 cm. How great is that?????????

I also have an appt in Toronto for August 28th to meet with the surgeon who will be in charge of my surgery. Dr. Rebecca Gladdy.

This is the next step.. Surgery. I am 2/3 of the way through this journey.. I hope the rest is easier then the first 2 steps were.

I finally see the light at the end of the tunnel and I am so happy for all your support that I have been receiving here and on facebook.

XOXOX
Keep cheering me on and praying for me. WE are in this together and SO close to the end.

Priscilla

Radiation Day 10!

Day 10 of 25 was completed today. My energy has started to severely decrease :( Otherwise, just mild side effects, very mild nausea, pain increase and feeling of heat(mild sunburn) in the radiated area. My appetite has stabilized, which is nice and I am following a "diet" set up by a good friend. It's not so much a diet, then a lifestyle change. Healthier choices mostly and mild exercise.


Sorry the post is so short but my bed is calling me.
I still appreciate your words of kindness and read them at low times
XOXOX
Priscilla

Radiation Imaging Scan

So i got the "tattoo" done today.. It's actually a permanent mark but it's only about the size of a mole. They marked 3 spots on my stomach. It was kinda painful, like a regular tattoo feels. I went in with a negative mood about the whole exam today especially after changing into the wonderful hospy gowns. UGHH. And the fact that it took the nurse almost 5 minutes to get my IV in . The poor girl was sweating up a storm and her nerves were shot after so many tries, I though she was gonna break down in tears poor girl.  It's just wearing me down being a patient. I don't want to be a patient anymore... I want my life back. I miss being able to spend non interrupted time with my girls and hubby and I miss working and just normal everyday things. Don't get me wrong, having this has definitely benefited me in some aspects as I am starting a journey towards becoming a healthier, and stronger person, but at the same time I feel like my second home is the hospital. One day at a time I guess and one step closer on the road to being eventually cancer free. I tell you, there will be a worldwide celebration the day that news arrives. XOXOX. And a special thank you everyone for the uplifting comments. It's really nice to see everyone's comments. Really helps for me to see all the love that you are sending me and helps keep me in positive moods. Hugs to all. Keep commenting and loving :)

Priscilla

First Ottawa Radiation specialist appointment. June 1/12

Went to see Dr. Caudrellier today. I started having massive pains in my lower left back that reverberated down my spine and left leg to the point where it was extremely painful to move the leg especially to climb stairs. When I discussed it with him he sent me for an emergency spine MRI to see if the piece of the tumor that is sitting over the hole where the nerves are has went into the hole and is causing the major increase in pain. I won't get the results until Monday unfortunately but if that is the case, then we need to start radiation immediately to stop further irreversible damage. But we will see what the verdict is Monday, so trying to keep positive over the weekend.

In other news, I was told about the radiation protocol as well as the immediate and long term risks of radiation (which sent me into tears). Immediate risks are the normal, diarrhea, nausea, sunburn pain, increased regular pain from swelling caused by radiation, lowered immune system (not a bad as chemo). The long term risks however are a lot scarier :(. They include infertility, very early menopause, extreme high risk of developing a secondary cancer caused by the radiation within the next 20 years among others but these were the painful ones to hear). The other complications they are worried about but might not definitely happen is that due to area the radiation is in, my small bowel may collapse and stick to itself which would cause problems and most likely surgery as well as the left kidney may have some damage caused to a part of it due to the radiation.

Next step is to have a CT scan done to determine the radiation area and a semi permanent tattoo around the area to be radiated as well as another MRI, this one of the abdomen and pelvis also to determine exact radiation area. All this should be done next week.

That's the news for now
XOXOX to all the readers and followers. I appreciate your support through this extremely trying time for me, my family and everyone around me.

May 22nd - Toronto Visit.

Had an appointment in Toronto yesterday. Mel and I left at 330 am to arrive for the 1045 appointment time. We had a fairly good trip up, stopped a few times for coffee for Mel and tea for me and a 730 am muffin breakfast. We hit Toronto at about 8 am and sat in traffic barely moving for the last 18 km. Took us 2 and a half hours to go the remainder of the distance. We arrived to a very packed clinic at 1030 am and registered for my appointment. We then sat in the big waiting room and didn't get called in until 1230. Then we sat in the smaller waiting room for another 45 minutes before someone came to speak to us. We saw Dr. Gupta who is the medical oncologist that has been guiding Dr. Nicholas on the chemo protocol that I have been on. She said my scans only show tumor stability and that the chemo has not done anything. She believes that my tumor is chemo resistant and doesn't understand why because the only other two cases that they had of adult neuroblastoma in the past 10 years were extremely responsive to the chemo. So therefore, chemo is being discontinued. To me, that is great news. Chemo has been very harsh on me. I've spent 90% of the last 3 months either hugging the toilet or hospitalized. Dr. Catton the radiation oncologist was also in the room and told me that I was very "unique". I asked him not to use that word as it's not a good thing to hear in this particular case. I don't want to be unique. I WANT TO BE CURED... Afterwards, Dr. Catton proceeded to explain that they have high hopes that the tumor will respond well to radiation therapy. And spent the next ten minutes trying to convince me to do the radiation therapy in Toronto, which would be half hour rounds daily, Monday to Friday for 28 days. I explained to him that I don't have the finances to spend a total of 5 and a half weeks in Toronto and I don't want to be away from my husband and children for that long. He finally agreed to find someone in Ottawa and work with them and have the radiation done down here in Ottawa. So within the next two weeks radiation should be started in Ottawa. Following the radiation I will get a 4 to 6 week break and then finally surgery. They are saying sometime near the end of August, beginning of September. Hopefully the plans stays. We ended up eating in the little cafe at the hospital and then leaving Toronto at 130 pm and drove back with fairly no traffic. Stopped once at Burger King cuz I was craving a whopper. And stopped for gas. Got home fairly late in the evening and tried to relax. I feel some disappointment towards the whole appointment because I spent a lot of money and time to go up there, with not the best of strengths as I am still recovering from my hospital stay and am still on antibiotics. I didn't even get an exam or anything while I was there and felt that the doctor's were rushed and I didn't get the answers I went up there for. A 13 hour total drive there and back for a 15 minute appointment that in my opinion, could have been done over the phone... I am seeing Dr. Nicholas on Monday and want to mention to him that it was a very hard and expensive trip to make for a 15 minute conversation. Maybe they will consider that before sending me up to Toronto again?  I am going to post in the neuroblastoma support forum and start asking questions about chemo resistance and what they found the next steps were. I've met 2 or 3 adults in the forum that have had adult neuroblastoma as well. Maybe, they will have some answers.

With hope,
Priscilla

Back in Hospital

Not good news today after all. Priscilla woke up yesterday morning with a high fever and didn't leave for Toronto as planned. She was admitted to hospital again and given platelet and red blood cell transfusions to improve her blood count. 2 transfusions later there is still no improvement so she will there until Thursday now.

The condition is called "Febrile neutropenia....

Blood counts were extremely low (basically non existent they said) so had a platelets and a red blood cells transfusions." It is something that chemo patients are very susceptible to so let's hope she responds quickly to treatment.

As before she will not be permitted visitors which is very hard on her babies and Will and herself of course.

Priscilla's Toronto appointment has been re-scheduled to next Tuesday.

Off To Toronto Again

Priscilla has had a phone call today advising of an appt in Toronto on Tuesday morning with her radiologist, Dr Catton, and her team. She was not expecting to hear from them until all the chemo had been finished so we're quietly optimistic that the recent scans show more than we thought and that they may indeed will be starting radiation soon.

It's a 5 hour drive so she will leave home at 4am, her friend Louise is taking her this time. Priss is also going to look into the "park and ride" system on the outskirts of Toronto as the morning rush hour traffic is horrendous.

We'll let you know the outcome once Priscilla gets home on Tuesday night. She also sees her local Dr Nicholas on Monday afternoon, perhaps he'll have some idea why Dr Caton wants to see her.

I love this photo taken the first day in Canada for me in 2004. Priss had just driven us from Toronto overnight and we were enjoying a huge breakfast at Dunn's on Elgin Street...the breakfast cost was all of $1.99 back then with bottomless coffee cups! Gerry looks like he enjoyed his too :D
 Priscilla is wearing my new sweater...and I never got it back lol

Wrestling with Dad a few days later

and a cuddle with me....ahhhh Priscilla you are much loved, have a Happy Mother's Day xoxo

A Bad Reaction

Must apologise for the lack of recent posts, Priscilla has been getting through each day as best she can, the drugs make her very sleepy but her beloved mother in law is there caring for the little girls so Priss can rest when she needs to. Her birth mother goes over every Friday and helps with the housework and that is much appreciated too. Bless you both.

On April 30th Priss met Dr Nicholas for the results of the scan done the previous week. The report was that  the tumour has retreated from the spine...but because scans weren't taken just before treatment began he cannot say that the tumour is shrinking but he feels it has certainly stopped growing so she began Round 4 of chemotherapy this week. Unfortunately Priscilla had an allergic reaction to the doxorubicin...she had this same reaction last time but it was attributed to the mscontin that time. Treatment for swelling of the face was benedryl. Now we know.

Another step recently has been for Priss to re hydrate herself at home through the cathoport.

So that is the news up to date, Priscilla and her family have 2 dogs, a chatterbox of a cat and 2 budgies so there is much going on all the time...I think that pets are the best thing ever so here are Dubby, Puss and Elmo...

Dubby Boy

Puss whose name will remembered after I post!

Elmo Basset Hound

That's all for now but we thank you for your thoughts and prayers,

xx

Drs appointment today

Much to my disappointment, I was told today by dr. Verma, who is replacing Dr. Nicholas while he is on holidays, that the chances of my tumor shrinking were really slim as they are using a children's protocol and they can't give me enough drugs to match up to an adults protocol as it would kill me. He said the best we could hope for at the moment is a stable tumor. I retorted by asking him why they were even putting me through this?? And he said because there's always the slim chance it would shrink. My thoughts are still the same.... Why would you put someone through all this if nothing is going to change??? Ugh. I'm utterly disgusted and praying that he is wrong.... I have chemo tomorrow, Thursday and Friday and will have a ct scan on the 23rd to see what has been going on in there and see Dr. Nicholas on the 30th to follow up. If there are no changes, they are thinking they will have to change the chemo protocol. Not willing to extend this any longer than need be, depending on my options I will ask the risks of immediate surgery and make a decision from there.

Hospitalized

So we know chemo is doing it's work. I spent from March 29th until April 3rd hospitalized for infection and extremely low blood counts.

When I arrived at the hospital on Thursday evening, I had a fever of 38.6 and chills like you wouldn't believe as well as barely any strength to even walk into the hospital. Got wrapped up in 4 of those wonderful heated hospital blankets and finally got the chills out. When my blood work returned, I was severely anemic, my platelets were low and my white blood cells were basically non existent and was told that I was being admitted. Started off the evening with a transfusion of platelets and 2 units of red blood cells. Then I got a magnesium IV, followed by IV antibiotics every 6 hours. In between all this I was kept on IV hydration with potassium. I'll tell you this, I was scared. Not a fun experience. Got set up in my room on Friday morning with a very lovely room-mate who was receiving in patient chemo and she left the morning I got released as well. Was nice to have a friendly room-mate. Definitely helped the time pass by. By Saturday, I was considered severely anemic again and received another 2 units of red blood cells. By Sunday, my white blood cells had finally rose to acceptable levels and I was taken completely off IV, hydration and all. Was happy to be free of THE POLE. :) Got switched over to oral antibiotics. Usually, they release you 24 hours after you are switched to oral antibiotics but my platelets were still on the decline so they kept me an extra day. Bloodwork came back Tuesday and platelets were still very low but on the rise so I got released in the afternoon.Got pain management finally under control while I was hospitalized and finally on a medication that works very well. Might have to up the dosage a little as I am taking the breakthrough pain med every 4 hours.

The hardest part of this whole experience is that children under 12 are not allowed on the oncology floor so I missed out on the kids a lot :( Was hard to be away from them for so long. But I know that in the end, once this is all over I will be able to make up all the lost time with the munchkins :)

So for now, I will enjoy my Easter weekend feeling pretty good and healthy right now. Tuesday is back to the oncologist to see what my blood counts are like. If they are back up to par, then it the beginning of Round 3 of chemo. This time it's Cyclophosphamide for 1 hr on Day 1 and Etoposide for 1 hr on Day 1,2 and 3.

That's all for now and sorry for the lack of updates. Health is usually not well enough to sit in front of the computer for very long

To Priscilla from Elizabeth

1. I have no idea how they function. But they do. And the clever ones realise that every hour they endure is another hour closer to the rainbow on the other side.
   
   I think you're allowed to feel depressed. If there was ever a time ...to kick & scream & shout & cry, THIS is your moment. And I would think there was something wrong with you if you didn't kick & scream & shout & cry. Go for it.
   
   As long as you remember this one truth... The most beautiful things in life are forged under duress. 

   
   

   

   
   
   
   This ring? It used to be a lump of sterling. Someone, somewhere turned up the heat and kept up the pressure until it *almost* reached its boiling point.
   
   Then it was battered & beaten into shape by things that *seemed* out of control. It became pure & refined.
   
   And finally, when the worst of it had passed, it was polished and smoothed. It became something of breathtaking beauty, something that glitters in the dimmest light.
   
   You're SO much tougher than all this. You might still be figuring that out at the moment, but we've got your back &... trust us... we know you can do it.
   ♥•♥•♥•♥

Wednesday In Hospital

Priscilla's Dr had prescribed MSContin for her pain relief, 15mgs two times a day. Unfortunately Priss had an allergic reaction to this and spent most of Wednesday in hospital, on a drip as she was so dehydrated from the constant vomiting...her message to me is as follows,


What a day!!! Spent the day in hospital today. Had an allergic reaction to the ms contin.... So back to just statex now. Was in hospital from 11 am til 5 pm. On Benadryl, and also was dehydrated from throwing up all night. So now on new anti nausea called maxceran instead of stemetil. It worked well in hospital and I was able to eat and keep it down. :)


(if it seems we are blogging unimportant sounding details please remember our goal is to keep an accurate record of Priscilla's journey, with all the details in case she ever needs them for another doctor or nurse and so when all this is over she can look back and see how far she's travelled!)

• • 
    

Uplifting Results

Today Priscilla has seen Dr Nicholas and been told that she "only" has a primary tumour ie one that has not spread to other organs or areas. As she says, "I feel now that there is light at the end of the tunnel".

There's also been vomiting and nausea caused by her anxiety which is common in cancer patients apparently.

A visit to the wig clinic has Priscilla topped with this beautiful short wig that is so perfect for her. (We need a better photo, Sweetie, please) The wigs are available as a free loan and go back to the clinic to be offered out again once Priss no longer needs it. Wigs cost hundreds of dollars to buy so this is really a wonderful service.

Biopsy testing is on-going in Toronto so we still don't know what stage the tumour is at but please share our relief that it hasn't spread.
Added later...the testing in Toronto is on-going as Priscilla's doctors were 1000% sure it was caused by Gorlin Syndrome which they've decided she doesn't have...they are quite baffled as to where and why this cancer is occurring in this young adult!

Bye bye for now,
Sue
xox

Hair Today, Gone Tomorrow!

Sorry about that...pun definitely intended
xx

On Tuesday Priscilla told me her hair had started to fall out, it felt like her head was sunburnt and she was very upset about losing her pretty hair. We had a chat about wigs and scarves etc and had a look at headcovers.com
where Mrs Kelly spotted the Kelly Scarf which she loved. I can't praise them enough...the scarf was delivered 2 days later...from Texas to Ottawa...brilliant.

I've just asked Priscilla if she had received it already, I had an email to say it had been delivered, and this was her reply...

• • Yes I got it and I love it!!!!!!
  • It's absolutely gorgeous.
  • I got my head shaved today.
  • The cancer society sent me to a hairdresser that shaves your head for free
  • They put you in a special room and close the curtain and you can have all your family with you if you want.
  • Mel went with me and we cried while they did it. She asked if I wanted to keep my hair and I said no so they are donating it to make a wig.
  • And they showed me how to tie the scarf and put it on for me. I have an appointment at the wig salon for Monday. I will send pics of the scarf on tomorrow.
  • Busy day on Monday for me coming up. At 820 I have to do blood work, then meet my social worker at 930, then see dr. Nicholas and finally get the stage at 1020. And then the wig salon at noon. At least it's all in the same place. Also need to speak to the doctor about more dental work and when I can do it safely because on the right side where the bottom molar was pulled out, there is a piece of bone protruding and it is really sensitive so dentist will have to cut the gum open, shave down the bone and restitch it up. He said that it's free of charge because it is post op fixing.
    
    Here are a couple of photos Priss took today....love that smile xx
    
    

    

    
    

    

    
    
    It appears that Priscilla is receiving some wonderful care, there are so many really good people out there who are quick to lend a hand.
    Love you
    xox
    
    
• 
  

  
  

  
  

..

A new week. A bad start.

Woke up to throwing up again today. Thought I ha the nausea under control. But I guess not. Ugh. Threw up 4 times this morning. Will drove me for Bloodwork this morning because doc wants to check my blood counts to make sure they aren't too low after this round of chemo and the poor guy had to pull over twice cuz I was sick. Nurse ended up coming over to give me injection early afternoon and I ended up sleeping the rest of the afternoon. Also picked up my partial during all this and it fits nice :) happy to have front teeth again :).

First Dose of Chemotherapy

Will copy and paste Prisca's words from her message to me, when I asked her how today had gone,

• • Not too bad. But I feel like crap :(. Stomach is a messssssssss. Waiting for nausea meds to kick in. Hoping that happens soon :(
    
    
    
    
    Got two more added to the mix. I take zofran at breakfast and bedtime for 5 days, and decadron breakfast and supper and the prochlorperazine every 4 hours as needed and if it's still bad, I can take it by injection, but nurse will come to do it, just have to call.
    
    
    Also got ranitidine to help because the decadron can be harsh on your stomach.
    
    
    They are sending the nurse for an injection now. I just threw up like crazy!!!
    
    
    Finally settled down after throwing up 5 times! And an injection!
    
    Rather graphic but this is Priscilla's Journey, warts and all! ;)
    
    Hope tomorrow is easier, my pal Deb said the first day was the worst for her. Will(DH) and Ron(housemate) are taking turns to get up with Megan(5mos) if she wakes in the night so that Priscilla can get her much-needed rest.
    
    Thank you every-one for your continuing words of support and love,
    Sue
    xox
    
    
    

Another busy week coming

This week will once again be a busy week! Ugh. Chemo Monday from 10 am til 1pm, chemo Tuesday from 1130 am til 1 pm, Wednesday chemo from 2 pm til 330pm and thursday, 1130 am oral surgeon to make sure all is well healed, and then dentist at 1 pm to adjust my partial.

Priscilla's Week

has been a very busy one. On Tuesday she was injected with a radio-active dye for something called Nuclear Imaging. Her first scan was done on Wednesday morning and she was required to lie still for 1 hour while the scans were taken.

Thursday was a day you wouldn't read about! Up very early for the second scan and then off to the oral surgeon so that he could check the work done last week. He explained that he'd cut some fat from Priss's cheek to plug the cavity caused when one of the 4 teeth were extracted and he was very pleased with the healing.

Next port of call was the dentist to collect her partial bridge, it needs adjusting.

Last but far from least was the hospital for her bone marrow biopsy. Priscilla's white blood cells will be taking a hammering in the next 4 months and she will be required to give herself 10 injections of neupogan to boost her supply of them. This was a shock as she hadn't known she needed so many injections or that she would have to inject them herself. A nurse will come to the house to show her how to do this.

The day was saved by a visit to a clever hairdresser who cut Priscilla's hair and restyled it for her. This was so successful in making her look younger that she was asked for ID when she went to buy a lottery ticket lol See how cute she looks?

Chemo begins on Monday morning and continues on Tuesday and Wednesday. Priscilla had a long overdue cry last night with Will and Kyra holding her tight until she could stop. She's tough and will handle the coming weeks bravely...we know the treatment is rough but will work.

xoxox

Latest News

Hi Every-one, thanks for your loving thoughts ..I am way behind in my updates, sorry.

Last week Priscilla  has had 2 front teeth removed and 2 molars...one molar pulled away the bone that divides the jaw from sinus cavity so that had to be repaired and stitched up from the inside, she's on a diet of yogurt and soup and very sore and swollen! 4 stitches inside her mouth and she really recommends Bacon and Potato soup!

This week begins Tuesday with the injection of the radio-active dye, Wednesday morning the first MIBG scan, Thursday morning the second scan and then she sees the oral surgeon to make sure her mouth is healing. She collects her partial bridge from her dentist an hour after that and has her bone marrow biopsy 90 minutes later.

Priss has been presribed Prochlorperazine for the vomiting and nausea she's already experiencing. The Chemo starts on Feb 27 with sessions on the following 2 days and next 15(?)weeks, then the radiation and hopefully surgery to remove the vastly decreased tumour.

Hang in there Sweetheart
xoxoox

A little news

So it looks like CAS Crown Ward aftercare emergency funds may be able to help me out with the dental costs.... Fingers crossed. Will find out more Monday. I go on Tuesday for the first of the dental work. 2 cavity fillings.

Dr. Nicholas has had the MIBG Scan moved up to the 21-23 instead of the 28th to the 1st. Still waiting for bone marrow biopsy to be booked.

Have to restart the stupid 24 hour urine test for the third time!!!! First time, they forgot to put in the acid in the jug. Second time, they failed to inform me that I needed to be on a special diet for 3 days prior to the test.. Hopefully this is the last time I need to do this!! Argh.

Will have more info on what the chemo start date will be after Monday's appointment with Dr. Nicholas

Had family pictures done tonight at the house with the girls so we have nice pictures to look forward to before mommy's hair falls out.... :)

Dentist outcome

So I went to the dentist's today.... Got 2 Quotes..... One was for 5 teeth extractions, and 2 cavity fillings and a partial bridge for 2133$...... The other one was for $2995 for 3 root canals, 2 teeth extractions and 5 cavity fillings.... This all has to be done before chemo starts to minimize risk of infection. We are probably gonna go the cheaper route.... Talked to social worker as well... There isn't much options. For dental work but I will look around for something. She suggested calling around and telling the dentist's I'm a cancer patient and see if they have a heart and offer cheaper rates.... We will see. She said she would call around for me too and see what she can find. That's all for now!!!

Treatment delayed..........

What an eventful day..... I have to re-do the 24 hour urine test because they gave me the wrong jug the first time..... This one has hydrochloric acid in it so I have to restart the test.. I went to pick up the jug from the cancer centre during Will's lunch hour so he could drive me. With all the stress I've been feeling lately I don't know why but I got really nauseous and Will had to pull over to the side of the road and I got sick:(  UGH... Then when I got home, the WeCare nurse came today to take off my bandage on the port-o-cath and flush the line. No more big bulky bandage and no more cords and wires sticking out....YAY!

Went to the dentist's yesterday. Looks like there was 6 teeth that may cause infections during chemo. She said she may have to pull all 6 :( ARGH! I was crying all night. 4 of them are my front teeth that got damaged when I was pregnant with Kyra. Problem is I have a huge fear of the dentist and shake just heading over to see one. But chemo doctor said I needed a check up before I started chemo so I worked up the nerve to go.. Hubby had to be there the whole time or I may have bolted. Dentist spoke to chemo doctor today to see what could be done so I am scheduled to go in for a consultation tomorrow with the dentist and see what can be done. Hopefully they can fix them instead of pulling them all out.....


After all this, Dr. Nicholas's nurse called me to let me know that the dentist would be in touch with me to get some dental work done. She also let me know that they are delaying my chemo start date because they haven't gotten all the test results back and they need them before they start treatment, so I let her know that I haven't even gotten a call for the bone marrow biopsy yet and she sounded pretty pissed and said she would get on it right away.. Also the MIBG scan is scheduled but it's for the end of the month. She said that was fine and that she would let me know about bone marrow biopsy. So it looks like it's not a Valentine's Day start date anymore. I'm kind of upset because the longer it takes, the longer I have to wait for surgery.... and the longer I have to wait for surgery, the longer I am not at work... and the longer I am not at work, the longer without income.......


I am scheduled to see Dr. Nguyen my dentist tomorrow morning at 9:55 am to talk about what work will be done.. Hopefully it isn't killer expensive.... It cost $190 yesterday just for a few x-rays and a consultation. At 2 pm I am scheduled to get a phone call from a social worker from the hospital to talk about income management and possibly day care help etc etc. Also I see Dr. Nicholas on Feb 13th for a quick visit. We will go from there I guess.. Till then.. Back to the lovely waiting game that is part of being a cancer patient..

Trying to keep positive
Priscilla

Helpers Will Be Needed

NatalieAnn at the Down to Earth Forums where Priscilla and I are members has suggested that as well as listing appointments and resources here we actually ask for help from family and friends...these are her own words

1. Many now have friends start a calendar blog with a treatment schedule, baby sitting needs, meals, transportation, someone to sit with the patient throughout chemotherapy tx., & where helpers can sign up for what ever they are available for. I hope there are some resources available for you Priscilla, to make your process throughout treatment as smooth as possible. Praying, hoping & wishing you the very best.

   
   As Joe and I are so far away and cannot help in practical terms I'm asking that you please contact Priscilla and offer your assistance in one of these ways mentioned by NatalieAnn...perhaps a meal for the freezer or an offer of a little housework...another mentioned that just having a clean bathroom and kitchen would be a wonderful gift to Priscilla and Will. Is any-one willing to go and sit with Pearlz as she undergoes the treatment? I know many of you are working full-time too which makes it more difficult.
   
   Other encouraging posts from the forum....
   
   
   

   1. One more thing Priscilla................if someone asks if they can help...........Say YES! People dont know what you need, or how they can help, but they really want to do something for you. Some ideas,
      
      Some meals to freeze
      Help with the children
      Help with housework - a clean bathroom will make anyone feel better!
      Picking up prescriptions or groceries
      Washing / ironing
      
      I wish I could hold your hands and take the fear away.
      
      Tarnie(a cancer survivor)

      
      Lisa said
      
      

      1. Priss I have no words of wisdom or ideas and suggestions for treatment but as a mother of 2 children the same age as yours I can only imagine the thoughts running through your mind. My thoughts and prayers are with you at this terrible time xx

         
         And here's our Lovelies in their Christmas dresses xxxxx
         
         

         

         
         

          

      
      

       

   
   
   
   

Tips For Coping With Chemo

Now that we know Priscilla will start chemo very soon and she will have side effects to the strong drugs she will be given I found this link to be rather helpful:

Chemotherapy Side Effects

There are tips to deal with just about everything Priscilla's body will endure, tips for Will and others who may be caring for her and most importantly tips on to cope with it all for our beloved Priss.

Here's a link to strategies for coping as a patient, with lots of testimonials from other survivors and a humour page too!

Oncolink Support

and some photos from happier times to remind Priscilla of her focus here. Kyra's first ice lolly....she looks rather surprised doesn't she? This was on a warm Saturday afternoon in Montreal on our way to Parc La Fontaine.

Here are Will, Priscilla and Kyra with the priest just after Kyra was christened...

Here's many of the family and friends who attended Priscilla and Will's lovely wedding in 2009

Last one...here's Prisca in summer 2006 at her aunt and uncle's Mechoui BBQ out in rural St Jude, Quebec...yes they even had cell-phone reception lol

Hang in there, Sweetheart
xxxxx

Today's appointment outcome

So I had two appointments today. One with genetics and one with Dr. Garth Nicolas. Basically this is the plan.. In the next two weeks I need to get an MIBG scan, A port-a-cath installed (day surgery), and bone biopsy(day surgery). After that as long as all is clear, we will start chemotherapy which will consist of 4 to 5 cycles of 3 weeks each pre-surgery. They are using 4 different types of chemo, not all at once and not at every cycle. The 4 types are Doxorubicin, Cyclophosphanide, Etopisode and Carboplatin.. Some cycles I will have to go in for 1st 3 days and some cycles only 1 day depending on the drug being used. I also will have an appointment with a social worker to discuss a few things. One of the things they will look into is to get an additional benefit plan. Will's covers 80% of prescriptions but I will need lots of meds as well as a couple injections to help keep white blood cell counts up and those injections, even with 80% coverage are about $300/each ...... Getting kinda scared.. The stuff they tell you when they tell you about chemo drugs is very scary.......Don't know what else to write. Kinda feeling blah about the whole day....

Appointment in Ottawa

Finally got a call from the doctor today. I have an appointment on Friday January 27th at 1 pm with a Dr. Nicholas. Hopefully treatment starts soon. I'm getting tired of all the appointments with no direction. I'll keep everyone posted. Trying to keep my spirits up, One day at a time
XO
Priscilla

The latest.... change of diagnosis

I went to Toronto on The 17th of January. I hadn't been able to post because I was too upset. I am feeling a little better now but still completed confused... It has also been rough because I've been filled with worry about little Austin, who thank God is slowly getting better now. So hre is the news....I don't have liposarcoma. I have a children's cancer call neuroblastoma. Ottawa is the one that diagnosed me with liposarcoma but because I was transferred to PMH (Princess Margaret Hospital), it is their policy to do their own testing.  They had 3 people test the sample in Toronto and all 3 of them concluded it was neuroblastoma. So now more tests in Ottawa including genetics testing among other testing. Not too sure what all the tests are as I still haven't received any follow up information. Also being referred to pediatric oncologist in Ottawa for chemo. Surgery will be in Toronto. Then depending on genetics testing.... Radiation. Looking at 9 months, give or take. Dr. Gupta, the pediatric oncologist in Toronto is in charge of getting everything set up in Ottawa and over-seeing the work. She said in 10 years at the biggest cancer centre in Canada (PMH), I am the 3rd adult to get this cancer?? Why can't I just be normal?????! So now, it's Friday and I haven't heard from Dr. Gupta yet... She has said she would contact me latest today and nothing.. Guess I will be calling Monday

Toronto Again.....

Dr. Gladdy's office called today. I need to go see Dr. David Hogg on January 17th at 10 am. Not taking the bus this time. That was too much for me. Going to be driving up with my friend Louise and taking the van. I really don't want to go. I just want to get things started. I don't want to go through any of it actually, but I know I don't have a choice but let me tell you this.... IT SUCKS... No other words will explain what I think of all this right now unless I insert many vulgar words............. I feel very depressed about the whole situation, I don't want to deal with it and wish someone would pinch me so I could wake up from this ridiculous nightmare. But that isn't helping...... I am happy that I am getting support through family and friends and that is what I need at the moment..

I need to pick up my x-rays as well as my latest MRI images from Dr. Auer's office sometime this week before I head up to Toronto. Dr. Hogg is a medical oncologist as well as I believe Chief of Genetics research so he will know what he is looking at and hopefully I will know more and have a plan all over again... I really hope the hiccups in the road stop so I can just get rid of this stupid lump!!!!!! I'm feeling very overwhelmed by everything and find it very hard not to cry all the time. But for my girls, I have too.

I did manage to get a hold of the Canadian Cancer Society and now have the papers to fill out for transportation. They will reimburse the cheapest cost of travel no matter which way I get there. I believe in my case it's the bus, but I can drive there and they will reimburse me the cost of round trip bus fare. So one step is done!! They also will get the Peer Support Group to give me a call so they can find a similar person who has been through what I am going through. Hopefully that will help. With all the waiting that I am doing, it's really been hard to keep in positive spirits.

That's it for now
Priscilla

Friday, January 6th

Into Ottawa for MRI scan of spine and X-rays of jaw and chest to determine whether I have Gorlin Syndrome.

More News... Not sure if this is good or bad....

Dr. Gladdy called me this morning...... She has done some research on the family gene of Gorlin's Syndrome. Because my dad and brother are positive for it , she wants me to get tested for it as well. If it is positive, radiation will not be a possibility, as it WILL cause skin cancer.... I need to get Gerry's genetics papers and my father's if he has them and send them to her. I now have to schedule a rib x-ray as well as a jaw x-ray. They said they will be able to tell if I have Gorlin's through the x-rays. If they show positive for Gorlin's I will be getting chemotherapy instead. The good news part of that is if I need chemo instead of radiation, chemo will be done in Ottawa. Dr. Gladdy strongly feels that I do have the Gorlin syndrome as having this type of cancer at my age is very very rare. The usual age for sarcoma is 45 and up. She said that Gorlin's syndrome people are very susceptible to sarcoma and skin cancers.  Going to call Dr. Auer later to get the schedule for the xrays and post later.

Thoughts of the Day

Alright, SO I've looked at the reports that were printed for me at the doctor's and all I got was my MRI report from Dec 23th and the Pathology report, So, I booked an appointment with my family doctor for January 10th, also miss Kyra's 3rd birthday :). THroughout this whole process, I have ensured that he gets copies of all documents, reports etc and I will ask him for a printout of all of them for my medical file. I have also purchased a day planner to help organize the turmoil of all the appointments for myself as well as for the girls so it will help me. Because of all the stress I have had, I feel like this will help me feel that I have more control. I've picked up my prescription for Gabapentin today. Hopefully it will ease some of the pain from the pressure of the tumor on my spine. This week will be hectic as I need to organize a few things before I head to Toronto. I need to go to the Canadian Cancer Society and apply for funding for travel, I also need to contact CAS Crown Ward After Care Emergency Funds and ask if they can help with the price of lodging at the PMH Lodge. The nurse at Princess Margaret Hospital said she thinks it is about $100/week and includes 3 meals a day. It's not expensive but if I can get help, it will most definitely be appreciative, I also need to set up babysitting/daycare for the girls. Lots of things to do :) But I feel a lot better now that there is a plan in mind and that I know this thing is curable. THe pathology report indicates it is round cell/myxoid liposarcoma. I will have to go to Toronto for follow up appointments for the next 10 years I was told but I can now say this. I AM, AND WILL BE A CANCER SURVIVOR!! For my girls and my family :) Much Love,
Priscilla

First Toronto appointment.

So I went to meet Dr. Gladdy today and also met Dr. Charles Catton, the radiation oncologist. They are going to discuss everything at the tumor board meeting on Monday and call me Tuesday. So far, the plan seems to be 5 and a half weeks of radiation (28 days) with weekends off. Then 8 weeks break, then surgery. Things might change after the meeting, but at least there is a plan in mind. So looks like I will be staying in Toronto during the week and heading home on weekends. Doctor Catton has said that he will make sure they schedule me for early Friday morning and late Monday afternoon so that I can be home Friday nights and leave Monday mornings.... So at least I can spend time with my girls. Recorded everything the doctors said, so I will most likely listen to it again and know more then. Like Dr. Gladdy mentionned, on your first visit, you will feel very overwhelmed and only hear about 25% of what was said. Might post more once I listen to the recordings again. Feeling very overwhelmed at the moment. That's it for now.

Appointment tomorrow

I have my first appointment with Dr. Gladdy tomorrow at 130 in Toronto. I'm feeling anxious, scared, nervous, etc, etc... Getting the girls ready to go to Lanna's for the evening and it's making it feel so much more real. I wanted to go to Canadian cancer society today to ask for travel help and it ended up being closed :(. So I will have to do that another day. Otherwise, trying not to stress out over everything and try to have a relaxing evening and enjoy having a break from the girls. :).

Teresa's First Emails

An unexpected offer of friendship and encouragement from another patient in Ontario....what a blessing.

Hi Priscilla

Teresa here, from the ACOR list.  When I was needing help there were a couple of people on the ACOR list who offered to be my friend and help me along the way.  Everyone needs different kind of help but the thing we all seem to have in common is there a times when we need to just vent.  I am offering my hand in friendship, to be here for you in whatever capacity you want. 

Perhaps I should start by telling you a bit more about me.  I am 42 (just had my birthday), have been married for almost 22 years now, have 3 kids (girls 20 and 16 and a boy 9).  My husband and I own our own business, a printing company.  In my family I am the only one to have cancer so it was all new to us.  My cancer started in 2003 when I noticed a lump in my belly and I underwent surgery to remove it before then even knew what it was.  My cancer story is posted on the Sarcoma Canada website, www.sarcomacancer.ca, if you want to read more.

I know you have some tests set up and that is really good, you need those done before you can decide on a treatment plan.   Do you have someone to go with you to the tests and appointments?  How will you travel to Toronto?  What hospital do you go to in Ottawa? 

Email me back whenever you like.  

Sincerely,
Teresa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hi Teresa,
My foster mother is coming with me to the initial appointment in Toronto on January 3rd. We decided to take the bus but it's costing a pretty penny. You were saying earlier that the cancer center helped you pay for VIA rail? Who would I ask that too? In Ottawa I was seeing Dr. Auer at the General Hospital Cancer Centre. She is the one that has pushed all the tests and referred me to Dr. Rebecca Gladdy at PMH. I had a CT Scan of my chest on Friday and I have a spine MRI next Friday. The initial MRI showed that the tumor was around my spine... I am honestly so scared and not ready for any of this. But I know that for my two little girls I don't really have a choice.. From what I have seen on here as well as reading your story and a few other stories, it seems like there is a high chance of this re-occuring. I guess it's normal to fear death at this point? My hubby is trying his best to be supportive... But from a man's perspective... I know he is struggling with the idea of me being so far away, as well as the fact that he wants to be there for me but also needs to keep working so we can pay the bills. I am currently on maternity leave until June so that helps a little. Doctor said depending on everything, if I am still not 100% she will put me on sick leave. I have so many worries and fears at the moment and find myself crying a lot.

Thank you for your support
Priscilla Kelly
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hi Priscilla

It is great to see a message from you.  Things probably feel like they are coming at you in all directions way to fast right now.  When you chat with myself or others on the ACOR list you have to remember that we have all had time to get used to our disease and learning to live with it.  You will be okay.  There is lots to learn, consider and cope with but you will cope, heal and be okay. 

Lets talk about facts and details first....

Travel costs...call the Canadian Cancer Society, it's 1 888 939 3333 and they can give you the office that is closest to you to pick up the forms from.  They have a program to help get cancer patients to appointments.  When appointments close by they provide a driver and car but when it is out of town they will reimburse you for the lowest travel method which in my case was the bus.  I wanted to use train so they would reimburse me the bus fare rate when I submitted my receipt for the train ticket.  It only applies for yourself, not your companion.  But, then, if you can get your doctor to write you a letter saying you need assistance when traveling then you can likely get free fare for your companion.  That is how it works with Via, you could also ask the bus company for their policy.  The letter had to be worded specifically (I can give you a copy of mine) and it can be from any doctor (a specialist or your family doctor).

On the topic of expenses, it may seem petty right now, but you can use all of your medical travel costs on your income tax so keep track of your appointments and receipts for travel including parking and meals.   These costs start to add up and getting a tax credit for it helps a little bit.  I use a calendar to track everything, my expenses as well as my appointments.  Of course I didn't at first but my accountant friend advised me wisely on this.

I know this is going to seem overwhelming but one last thing I want to stress to you that is really important - start keeping your own medical binder.  You need to take charge of your health care and keeping a record of all your appointments, tests and results is not something your doctor will suggest but pretty much any cancer patient you meet on ACOR will tell you is important.  You have a right to copies of all test results (it's a written report your doctor will have in your file) plus reports from each visit that your doctor writes about what happened at the appointment.  My doctors in  Montreal actually expect me to want these and they hand me copies at the end of each appointment however when I was a PMH I had to request everything.  I also keep notes on conversations, I print out useful emails, I collect business cards, etc.  I have used my own binder of information many times.

PMH - it is the largest Sarcoma center in Canada.  It is a very large hospital in a very large city.  I like to carry maps with me of everywhere I am going.  Walking maps of the city, maps of the hospital, and so on.  I went to PMH twice for consultation, once in 2008 and once in 2010.  The good I thought was the expertise.  The bad I thought was how hard it was to get replies back from doctors about appointments and results.  My advice would be to ask for business cards from everyone, and contact information about who to call once you get home if you have questions.  PMH, beyond the Sarcoma unit, has lots of resources such as childcare, social workers (yep, it gets pretty emotional and a good counselor can help), nutritionists and such so don't be shy about asking how to find these. 

At this point I am hesitant to bring it up because you must feel so overwhelmed but I want to plant a seed of the idea of seeking a second opinion.  When you read stories of others there is lots of recurrence and that can be the nature of the disease depending on what type you have but, and I say it again for emphasis, but, sometimes it is because the first treatment was not right.  That is a lot of pressure to put on you right now. But its the truth.  Because it is a rare cancer, treatment opinions may vary and you will need to decide what you feel is right for you.  That's tough to hear isn't it?  It was the case for me, a couple of times over.  And others on the ACOR list will tell you the same.  If you would like to seek a second opinion from the same clinic I go to in Montreal I would help you with that.  It is a Young Adult clinic which I found had a bit of a different approach because it was focusing on people 20 to 40 who are raising families, and still have a lot of life to live.  It's not to say you are choosing to have your treatment there, but it would mean another doctor looks at your case and gives you information which is always a good thing.  And it is closer to you. 

Other ways I can help you might be:
Sonia on the ACOR list, her Mom was treated by Dr. Gladdy so you might want to talk to her more about Dr. Gladdy and PMH.
Another person I met last year, Charlene, whose husband Angus had surgery for Sarcoma last fall at PMH, with Dr. Swallow would talk to you about how they coped.  They had to travel and stay in hotels, go for tests at PMH and would probably have lots of experiences they could share.
Jessica on the ACOR list seems to be similar to you in a lot of ways and you might want to ask her specifically how she handled treatment and fears with her young children. 
I met a woman last summer who was going to Ottawa for her Sarcoma treatment, I will phone her next week and ask her who she sees just for interests sake.

Now that I have probably overwhelmed you with things to think about let's consider you.  How are you feeling?  I still remember that deep in my gut fear when I had to tell my kids about my prognosis.  How my husband and I felt, how we couldn't find words to share but would just curl up in each others arms at night and not be able to let go.  Fear, such huge fear.  It's natural to think about death, how could you not when you have been told you have cancer inside your body.  Everyone finds there own way to cope.  Find someone to write to (me, the ACOR list, yourself in a journal, a friend or family member) and share how you are feeling.  I find it really helps to get it out there.  No one is going to hand you the solution but by sharing openly and honestly we will help each other find the way.  I like to find things to read too...I am a big fan of Kris Carr of Crazy Sexy Cancer  www.crazysexycancer.com and the Cancer Crusade www.thecancercrusade.com.  You might also want to search on Young Adults with Cancer as you have different needs at your age than someone older with cancer.  I can lend you books too if you want instead of having to buy them.  That long bus ride is a great time to do some reading.  My husband does not go to all the appointments with me either, it's just not always possible, sometimes my sister or a friend goes instead.  It's good to have someone with you always.  I find I don't always remember the questions I want to ask, or I don't remember everything I was told so that second set of ears is important.  And you need the support.  Of course you will cry, and be scared or angry or a host of other feelings.  Having cancer is complicated stuff.  Be gentle and understanding with yourself. 

If it gives you hope, my story seems complicated with lots of surgery, treatment and such in it, but currently I feel top notch healthy and am not held back in any way by my cancer.  I do not take any medications, I have no side effects or impairments, I go 110 miles per hour living it to the fullest.

Sincerely, with kindest thoughts,
Teresa

Words Of Encouragement

Although very few people knew the extent of my illness messages of support began to arrive...I'll copy and paste them, they are so encouraging and uplifting...

these were sent to Mom Sue,

Hi Sue
I was so sorry to hear of your step daughter's cancer diagnosis. Her little ones are so adorable, what a terrible blow for them all. I will remember her in my prayers - if you would like me to add her name to our church prayer roll please send me her first and last names and I will be happy to do that. It must be hard to be so far away at this time but thoughts, good wishes, positive vibes and prayer can traverse any distance.
Love and best wishes to you all,
Jeni "

If you think it appropriate, I'd love to mail something to Priscilla and her husband & girls. Our old neighbours moved back home to PEI a few years back and their son was diagnosed with Lymphoma shortly after. I sent them rainbow window stars that we made (one for the hospital bag to put up in hospital when Parker stayed), one for his little brother's room and one for his parents. It gave them something to focus on to connect the family when they were apart. It also gave Parker a focus point when he was enduring difficult treatments. I'd love to make them and send them to her and the family if you think it would be a good idea and not intrusive.

Hugs and love to you dear sister in Motherhood...

Sherri XO "

Sue asked at the Down to Earth Forum for support and these comments came in...

all my thoughts and prayers will be with all of you. sophie

 Oh Sue, you and Joe must be worried sick. How wonderful for Priscilla that she's been able to find so much support, and you too. Sending all my love and very best wishes that she beats this horrible disease. Mandy

I'm very sorry your family has to go through this. Sending positive thoughts.Donna

Priscilla is very much in my thoughts Sue, as are you and the rest of her family. I'm sending love and all my well wishes for the best possible outcome for her and for a smooth road through treatment. Claire

Prayers for her and for the entire family. Melissa

Priscilla will be in our thoughts every day, Sue :( I can't imagine how hard that must be for you to be separated during this horrific time.... I am so very sorry.((((((((((Sue)))))))))) (((((((((Priscilla))))))))) Sherri 

I'm so sorry. It must be so hard to be so far away.In my experience specialists from all over the world come to practice in Toronto - good thing about being a major city - so the newest best treatments are there. I'll be praying for her and your entire family. Shaylene

I am so sorry to hear this, Sue and will be keeping Priscilla and all the family in my thoughts. If anyone needs another online community to join, this is the link for the macmillan soft tissue group http://community.macmillan.org.uk/ca...s/default.aspx. There is lots of other information on the macmillan site. Sarah

Sue, I'm glad Priss finally has a diagnosis but it doesn't sound good, does it and that's a very large mass? I'm going to keep her in my good thoughts for this whole process. A positive attitude does help.I don't think I was the one who suggested Vitaman E cream before radiation. I think that might have been Tarnie but when I asked about putting lotions on before radiation to protect the skin I was told absolutely not. In fact, I was not allowed to use anything until the skin actually blistered and then I was told to use something called Aquaphor but as soon as the blisters burst open I was prescribed Biofane, an excellent cream (but very expensive) that healed everything up in no time at all. I believe Biofane is a French cream so should be available in Canada but not sure about Aquaphor. Shelagh

Thoughts and prayers with you and your family at this difficult time. Gillian

My thoughts are also with Priscilla and your family. I was diagnosed with leukaemia at the same age and also had to stop feeding my daughter (she was 9.5 months at the time). It added an extra painful dimension to it all, so I really feel for her. I hope the radiotherapy and chemo zap that horrid cancer and wish them all the very best in the tough times ahead. Sonata

I not very familiar with this type of skin reaction, but a few years back I was given something called Silvadene when I picked up a bunsen burner that I didn't know was on. It was a pretty bad burn, but healed without any scars or blistering. Another science teacher in our school also used it on a burn and they had great results as well.Wishing you and yours all the best HollyG

Sue, I'm keeping you and your family in my thoughts. I send love and hugs. Rhondajean

lots of love and hugs for all of you, praying for her and the family Nimwe

Oh Sue, what a terrible thing for you all to bear. Love, hugs and prayers for you all. Words are so inadequate at times like these. Deena

Sue, lots of hugs and best wishes from me too. Treatment can be rough, but it is doable. My way of coping is to remember why I am doing it.............and everything I have yet to do in my life. Every rads oncologist has their own way of treating your skin. Whereas Shelagh was told not to use anything, I was encouraged to moisturise my skin well for a few weeks before hand (dry skin burns quicker). Once you start rads you have to be very careful what you use (only a couple of deodorants are allowed, no talcum powder ect). Priscilla's two little ones will be her motivation...............and I will be praying that she makes it through this.Tarnie 

I use something called Resinol on DD's blisters - although from extreme diaper rash not chemo.Shaylene

Thank you all for the virtual hugs and support...it really matters.Shelagh, the idea of the cream is to get her skin in the best condition now b4 the treatment starts....I know she musn't have any on while the radiation is actually happening.Priss is a member here and will be encouraged by your words, suggestions and prayers...thank you xxxx SueMum

Very sorry to hear what your family is going through. It is really hard being so far away, I remember my Mam's hurt at not being able to see her parents when they got ill (all of family is in Holland). Best wishes for a complete and speedy recovery. Marjoh

Hi everyone,Thank you everyone for the kind words. They mean a lot. I am going to fight this with all I have for my 2 precious girls. It's gona be rough and I sure as heck do not want to go through it but I have to for my girls. Please keep the prayers coming! Priscilla 

Yes, Sue, that's what I thought to do before radiation as mentioned by Tarnie but when I mentioned I was planning to do that I was told absolutely not and I also couldn't use the Aquaphor until given permission and even then I could use it only directly after a radiation treatment or before bed so that all trace had disappeared before the morning's treatment. I was also not allowed to use any kind of deodorant under that armpit and the only thing the oncologist said I could use was cornstarch. In the middle of a Houston summer with high temperatures and high humidity was the hardest part of the treatments.Every oncologist has their own way of dealing with treatments I imagine and you have to go along with what they suggest/require. Mine was spot on with when he thought the skin would blister and it took less than a week after treatment had finished for the Biofane to do its job.

I wish Priss all the luck in the world with this. Shelagh

Here's Priscilla, Bowling Champion of Walkley! 2006 Something to look forward to, teaching my girls to bowl.