HoHoHo!

HoHoHo! Merrrrrrrrry Christmas Everyone!

Just a quick update to let all of you know that I have FINALLY gotten my first chemotherapy appointment scheduled! I begin treatments on January 10th @ 11:30am and will continue on every two weeks for the next 6 months. As much as it will be a very intense treatment schedule, I am anxious to get the ball rolling and start blocking these nasty little Mets that have taken up residence in my liver. That gives me just over two weeks to gain back the weight and strength that I have lost in the past couple of months.  Luckily, it’s a good time of year to try to gain weight.  Bring on the GRAVY!

And now for a call to arms....I will likely lose a good portion of my hair by the third or fourth treatment and I am looking for some cute little hats to wear. Unfortunately, I have such a wee noggin that most hats don’t fit me.  If any of you knit or crochet or know someone who does, please let me know!

That’s it for now.  Please everyone take good care over the holiday season!

My warmest wishes to all of you and your families – XOXO, Barb and Tim

Field Trip to Canser Clinic...

Team,

First of all, I just wanted to tell you that I had an incredible day today! I felt stronger physically than I have since before my surgery and that seemed to translate into feeling stronger mentally and emotionally. Chantelle and Dad were SHOCKED at the difference that 24 hours made, considering I was so weak and tired and struggling with pain management yesterday. Good days and bad days I guess, but considering I met my Oncologist for the first time today, it couldn’t have possibly come at a better time.

As mentioned in my last update, I got my staples removed on Tuesday. Tim took me to my appointment with my GP, and other than a few “sticky little buggers” around my belly button, it really was nothing to worry about. Then Wednesday morning, Tim flew home and Chantelle took me to consult with my new Naturopath. I count myself incredibly lucky to have gotten in to see him so quickly – he was originally booked up until the new year and I got in simply b/c he had a cancellation. He has experience working with cancer patients and put me on a variety of supplements and we are starting IV Vitamin C on Friday. Dad came in yesterday and is taking over where Tim left off, helping around the house, cooking, cleaning, taking out the garbage and watching Y&R with me in the afternoons. (Amazing what the men in your life will do for you when you have Cancer).

And today was my first trip to the Cancer Centre – I was initially very nervous but thanks to my “Entourage” – Dad, Chantelle and Kristie (and Tim via text), it was a relatively painless experience. As many of you know, the type of cancer I have is EXTREMELY rare – only 1% of all gastrointestinal cancers occur where mine has, so there is limited data on how to best treat it. Dr. Sami gave me two options as to schedule of Chemo and type (IV every two weeks versus IV + Oral every three weeks). When asked if he was treating his daughter (that’s the drug rep coming out in me – paint that patient picture!) how he would proceed, he said he would go with the IV chemo every two weeks – so I guess that makes THAT decision pretty easy.  There are still a few treatment decisions that have to be made – for example he wants to put me on a drug called Avastin that is typically used in colorectal cancer patients, but has to try to get it covered for me because it is incredibly expensive and there is not a lot of data surrounding it’s use in small bowel cancer.  Hopefully that will all be ironed out very quickly, because as I understand it I will be getting a PICC Line (peripherally inserted central catheter that is used to administer chemo) on December 21st – in order to start chemo during the week between Christmas and New Year’s (HoHoHo), or failing that, first thing in the New Year. 

This is all very scary HOWEVER, Dr. Sami told me that in the 10 years he has been at the Cancer Centre, he has only treated 2 other people with this kind of cancer – and they are both doing really well! So, I am very excited to start the process and starting killing off these little tumors and move on with my life. 

Again, I want each and every one of you to know how very much I appreciate all of the kind words, encouragement and gifts you have sent me since getting sick. I need to apologize to those of you whom I haven’t yet been able to respond – it really has been a whirlwind of a week and is becoming a full-time job keeping up.  A day doesn’t go by that I’m not brought to tears by the generosity and love flowing my way.   Please know that I will contact you as soon as I can – I have a list and I will get there eventually!

Luv ya,

Barb

Bring it ON!

SO Good to be HOME...

It is so good to be home and well enough to write my own update! (Thank you to Chantelle for taking care of things during my surgery and recovery.)

As you all know, my surgeons were able to successfully remove the tumour in my small bowel. However, during the surgery they found that the cancer had spread through my lymph system to my liver. They removed some of the damaged tissue but were unable to remove it all, so I definitely have a battle ahead of me – with chemo and a variety of other medical treatments.

I was released from the hospital on Thursday and as Chantelle inferred, it was a bit of a tough week for me. Unfortunately, my epidural failed half way through the first day after surgery and pain management became a real challenge.  I know that many of you wanted to come for a visit, but I really was not up for it that first week.  I had a very small circle of friends and family who were with me almost around the clock taking very good care of me, feeding me, forcing me to move around and walk and almost killing me with laughter (Dad, Chantelle, Tim, Pam, Mar, Kristie, Roli, Parch and Mike). I have lots of funny stories – apparently I turned into a crusty old lady with lots of interesting hallucinations and a penchant for imitating Whitney Houston. I don’t remember a lot of it, so I think my friends are making it up.  

Thanks to all who sent flowers and cards - I definitely had the brightest and sweetest-smelling room on the ward:

The first few days at home were a little tricky – I guess I had pretty high expectations of feeling good as soon as I got home. Naive. Funny how much I missed all those nurses with their syringes full of morphine....  Tim has been an absolute god-send since I got home, don’t know what I would have done without him.  We are really focussed on getting me back to my fighting weight – so he has been in charge of making LOTS of healthful, high caloric foods and shakes and as much fresh-squeezed veggie juice as I can drink.

The next step obviously is chemo, but in addition to that we are on a quest to do EVERYTHING we can to beat this thing. Thanks to my good friend Michelle, we have come across some very promising alternative medicine options that we are looking into as additional treatments.  She has put us in contact with a gentleman in Ontario who had a very similar cancer to my own, that had spread to his liver as well – and who today is CANCER-FREE.  In addition to chemo, he ate a very clean, cancer-fighting diet, took very high doses of IV Vitamin C and a variety of supplements. In addition to this, he took very low doses of Naltrexone – which at high doses has been used for years with HIV patients.  It has been used more recently with cancer patients, MS patients and those with fibromyalgia.  Low Dose Naltrexone (also known as LDN) is a bit controversial though, b/c it is not actually indicated for cancer treatment and there have been no clinical studies conducted to establish efficacy. (Mostly b/c it is an old drug that has already been genericized, so there is no financial upside to conducting clinical trials.) Some of you may have questions or concerns about LDN, so I encourage you to visit http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html.  Another good site is www.ldninfo.org 

The reason I tell you all this is because many of you on this distribution list are pharma reps, pharmacists and nurses. Part of my challenge in the next little while will be finding a practitioner who is willing to prescribe the LDN for me, and unfortunately there are very few doctors in Saskatoon who have knowledge about it and even fewer with clinical experience.  I already have several of my pharma buddies talking to their physicians  and pharmacists to get as much information we can about LDN – and I would ask any and all of you to do the same.  I truly believe that I can beat this, but want to explore absolutely every avenue available to me to do so.  I already have an appointment with a naturopath in Saskatoon who does a lot of work with cancer patients.  I plan to work with a homeopath and an acupuncturist in order to boost my immune system. There is also a great clinic in Calgary that specializes in Integrative medicine called the Hoffman Centre where a good friend of mine was treated and is now celebrating 5 years of being Cancer-free.

This is going to be a very busy week for  me. Tim is taking me to my family doctor to get my staples removed on Tuesday, on Wednesday Chantelle is taking me to see the naturopath and on Thursday I have my first appointment with my oncologist. Thank you all so much for all the well wishes and prayers, and please keep them coming.  It makes all the difference in the world.

Take good care,

Barb

Surgery Booked

Just a quick update for you regarding my surgery dates and some requests...

First of all, my surgery date has been booked for December 1st. I have to be at St. Paul’s Hospital at 8:30am, with surgery commencing between 11am and noon.  If things go smoothly and I only require a bowel resection, it should take between an hour and 4 hours. If there are any complications or I end up needing a more intricate procedure once they get in there, it could take anywhere from 4 to 10 hours.  Either way, Tim, Chantelle and my Dad will be there. I have taken the liberty of passing along to Chantelle a list of all of your email addresses, so she will send you a quick update after my surgery to let you know how it went.

Now, time for a request (or two). Do me a favour and send me your mailing address when you get a chance. I am creating a little database so that I can keep myself busy during my recovery with Christmas cards – it will give me something to do and get me in the holiday spirit. Also, for those of you who have Blackberrys and who are not currently linked to me on BBM, please send me your PIN. Thanks.

Again, thanks to all of you for all the love and support you have given me these past weeks, it has been nothing short of humbling.  Please know that I am feeling really good and really positive about this process and looking forward to meeting each challenge as it presents itself on my journey to beat this thing.

Hugs in absentia,

Barb

BRING IT ON!

Ok, for a girl who has cancer (yes, I do unfortunately still HAVE cancer), I got the best news today that I could have gotten from the surgeon.  Turns out, it doesn’t look like the cancer is in the location they originally thought it was. Because it is lower in the duodenum, it will require a MUCH LESS dangerous procedure (bowel resection as opposed to a WHIPPLE) that can be done fairly soon with MUCH GREATER ODDS of a FULL RECOVERY.   I am very confident in the talent and skill of my surgical team. I will likely still need some chemo treatments as an extra insurance policy, but after hearing what I heard today, I say “Bring it ON!”

I am expecting a call from my surgeon over the next day or two after he has consulted with one other surgeon just to confirm the best course of action. I will update you once I know for certain my surgery date and any other news that comes up.

I want to thank each and every one of you for all the love and support you have given me these past days – it has done so much to buoy my spirits and keep me hopeful. I feel like the luckiest girl in the world that I have so many amazingly supportive friends and family on my team. I was so blessed to have Tim and Chantelle there with me today – they were rock-solid support and I don’t know what I would have done without them. Special shout-outs to all my girls who have spent endless hours on the phone with me, sent me incredibly up-lifting emails,  bringing me fresh veggies and juicers, booster juices and Starbucks...you are all in my heart.

And now a quote from the strongest broad I know, who is also fighting AND WINNING her own battle with cancer, Nancy Olson,

“So.......................LET’S DO THIS!!!!!”

Love BJ~~