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.