Saturday, 28 January 2012

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'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

Friday, 27 January 2012

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....

Wednesday, 25 January 2012

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

Friday, 20 January 2012

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

Thursday, 12 January 2012

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

Friday, 6 January 2012

Friday, January 6th

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

Thursday, 5 January 2012

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.

Wednesday, 4 January 2012

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,

Tuesday, 3 January 2012

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.

Monday, 2 January 2012

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. :).

Sunday, 1 January 2012

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,, 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.  

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 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 and the Cancer Crusade  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,

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 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 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.

The Journey So Far...

Hallo and welcome to my blog where I will try to make some sense of what lies ahead and keep a record of my fight.

I am, Priscilla, a 28 yr old wife and mother of two daughters, K is almost 3 yrs old and M is only 4months.
On November 13th, 2011, I was playing with K and she sat on my tummy...I felt pain and then found a grapefruit sized lump at my waist, to the left of my navel. My exact words to Sue(Mum) were

    • I found a large hard lump in my stomach on Sunday.... Called doc Monday and he told me to go in right away. Sent me for an ultrasound. Which was today and lasted an hour!!!!!!!!! Finally at the end the lady stamped the papers rush and stat and told me that if my doctor hasn't called me by Monday to call him and make sure I follow up...... So now I'm worried sick :( urgh."
Later in the week I still hadn't heard and sent another PM to Sue
    • I'm hoping it is just a fibroid. It starts just under my ribcage on the left side and goes all the way down to about mid stomach. It's about the size of a grapefruit and tender to pressure. (i noticed the pain of it when kyra came to sit on my stomach when I was laying down to cuddle with me"
After the first ultrasound I was told I had a tumour, 15.5x6.1cms in size, my GP told me that there's a 90% chance it's benign....the reports reads as follows..

    • This is what u/s report says. Big medical terms. There is at the level of the paraumbilical area on left side evidence of a large mass in the left lower quadrant displacing the aorta to the right. This large mass measures 15.5 cm by 6.1 cm and has a lobulated appearance. This mass is mainly heterogeneous and predominantly solid without any definite large cystic lesion. The lesion is pushing over the left psoas muscle. The etymology of this lesion is unknown and certainly further assessment is recommended. A ct scan examination should be the method of choice to investigate this large lobulated lesion which is compressing the retroperitoneal structure and encasing the arterial supply to the pelvis and lower limbs.

      After this, I saw Dr Weaver on November 24th and he referred me to Dr Rebecca Auer in Ottawa. I saw her on December 8th and she gently told me that it is cancer...very, very rare and growing from my abdominal muscle, wrapping itself around my aorta and intestines. You can read more about retro peritoneal liposarcoma here.
      I have also joined a forum run by the Liddy Shriver Group and met other people with this same cancer and been very encouraged by this.

      So this where we're at right now, waiting to go to Toronto to meet the new specialists and then back to Ottawa the same day!

    • Here are some of the dates i remember...
    • Nov 14 th Went to doctor's to discuss lump I found
    • Nov 17 th Initial Ultrasound
    • Nov 23rd Results from ultrasound show evidence of large tumor
    • Nov 24th. Emergency department for CT scan. News of C word...
    • Dec 8 first appointment with Dr. Auer
    • Dec 16 Biopsy
    • Dec 22 MRI and Dr, Auer. Refferred to Toronto
    • Dec 30th Chest CT scan
    • I guess I did have all the dates down in my phone
    • I am off to bed now though! Wont make it til midnight lol XOX