Better Late Than Never....

Wow. February 1st.  I can hardly believe that I am already 4 and a half months into this Canser Journey and I have only NOW gotten up the gumption to start a Blog.  Several times I have been advised to journal - that it can be very therapeutic and healing - so here I am.  I need to heal - and playing Free Cell on my laptop all day just isn't cutting it anymore. Since I am new to the world of blogging (and canser for that matter), I guarantee I will be a little like Bambi on ice, having a general idea of what I want to do but no clue how to do it. Please bare with me as I fumble my way through - I am hoping this will replace my weekly updates and give me the opportunity to focus on the best parts of my days and share them with you.

 

New Phone

Everyone,

Ok, lots to tell you and little time to do it, so this will be short and sweet.

First of all as you all know, Friday morning I washed my damn Blackberry with my dishes. It was a company cell phone and I’m not sure when they will replace it since I am on disability, so I bought a new one today. My new number is 306-203-6648 and PIN is 281B4522. Please add me at your leisure.

Tim and Nance were both in this weekend and we had a blast.  She and I spent most of our time on the sofa reliving our old JOI days while Tim waited on us hand and foot.  She also lent her expertise at Pink Tree – she helped me (FINALLY) pick a wig and commit to it...as well as a few sexy new bandanas. I will look like a rock star thanks to you, Spanks. I tried them on for Tim on Skype tonight and he instantly went into a (really questionable) rendition of Sweet Child of Mine! Most of you are rolling your eyes right now, but I love it!

I am getting ready for Chemo #2 tomorrow and in preparation had to go in for some blood work today. Unfortunately my hemoglobin is extremely low again, lower than it’s been since before my surgery.  (Certainly makes sense considering my lack of energy and recent bouts of breathlessness.) This you can imagine is a little frustrating for me since I discussed this very thing with my oncologist in the middle of December, requesting at the suggestion of my surgeon to have a blood transfusion. I was denied, told he would consult a hemotologist and get back to me. I heard nothing and today, was asked by my oncology nurse why I haven’t been taking iron supplements in the interim. Hmmm....I don’t know? Maybe because there was no clear direction to do so??? SO, long story short, I will still have my regularly scheduled chemo treatment tomorrow, but it will be followed by 4 hours of blood transfusions at RUH on Wednesday. Awesome.  Insert sarcasm here.

So Kristie and Marlys are on Chemo duty this time and then my dad is coming in tomorrow afternoon to take over for the week.  I am hoping beyond hope that Chemo Day is as pleasant this time as the last. Please know that I will be thinking of all of you and channelling your positive vibes.  Feel free to text or BBM – my most recent contact list went down the drain on Friday and I fear I have lost some of you.

Love and hugs,

Barbie

CHEMO Wins Round #1

Wow, what a week. It has been one helluva week. This is the first time that I have been able to get up the gumption to make contact.  To those of you who have contacted me with A) no response or B) a bitchy one, please forgive me. I am JUST starting to get back to myself now.

First of all, a cute little shot of me on Chemo Day:

Hmmm....notice the nice, warm blanket from Kristie and Scott, the jaunty little hat from Mona and Bob, the fuzzy slippers from Bob and Linda? How cute.  The one thing I should point out that isn’t immediately obvious in this photo is my complete and utter lack of understanding as to what was REALLY about to happen. Sweet Jesus, it’s amazing what a chipper nurse and a sublingual Ativan can do to turn Chemo day into a picnic with friends. The drugs made everything fly by (for me anyway).  We got there about 11:30 am and as you can see I had my own personal suite where a cavalcade of nurses, pharmacists and nutritionists pumped me full of several different types of chemotherapy, anti-nausea drugs (Thank you Spanks, Darin Anderson and Merck in general) and information about what to eat over the next few days. We were there until after 4 pm, as I am on several different drugs that need to be infused at separate times for several hours each, then near the end they attached a bottle of 5-FU to my PICC line that would stay in place for the next 46 hours. And by bottle, I mean it looks like a baby bottle with a huge condom resting inside – full of medication that slowly deflates as it enters my system.  The idea being lower side effects and the ability to go home with it as opposed to staying over. Two things – not sexy at all and there’s a damn condom rolling around a bottle around your neck! Makes a girl the butt of a few jokes, I can tell you.  Bring it on Joe, Billy, Michelle and Dean....I’ve heard ‘em all already.

Tim, Kristie and Marly all took really good care of me while @ the canser clinic...and it was shockingly stress-free. And then BAM – reality set in on Day 2.  Without going into any great detail, I can honestly say that I have some of the best and most supportive friends and family around to have put up with me, specifically on Day 4 and Day 5 of my FolFox treatment.  My dad and Tim truly are the most patient men on the planet to put up with me and my moods, Spanks did a great job of keeping my spirits up when I refused to do it myself and Mar and Telly have been so great about helping me eat and do stuff around the house.  I have to say that I really had no idea that this would be so hard mentally and physically, but now that I know what to expect, I plan to be better prepared next time. That’s right – MORE DRUGS. Nancy is of the belief that one should go through chemotherapy stoned and I am a 100% convert to her way if thinking.  Seems like just plain good sense to me.

So that’s it for now. I think today (Day 6) was the TSN Turning Point and I am hoping for an easier week now, allowing me time to recover for the next round. Better head to bed, I think the sleeping pills are kicking in!

Please take good care of yourselves my friends,

Bring it ON!

And so it begins...

Members of Team James,

Wow, I guess it’s been awhile since I sent out an update. It has been a very, very busy few weeks and I am at a bit of a loss as to where to start. Hmm, at the beginning I guess....

The holiday season was lovely, surprisingly lovely considering the circumstances. I wasn’t yet up for travelling so I stayed in Saskatoon, spending most of Christmas with Chantelle and her family. As always, it was a pleasure to be included in the Morrison/Reiber/Shields Christmas celebration.  Tim came to town on Boxing Day and stayed until New Year’s day – we had a fantastic week, topped off by a lovely New Year’s Eve with Chantelle, Kelly, Lance and Marlys. Every day found my voice mail and cell phone full of merry wishes and positive vibes.  Every mail delivery day found my mailbox overflowing with letters, cards, gifts, monkeys (that’s right, I said monkeys!), hats and gift certificates.  I have no words to express my appreciation. You guys ROCK! I did manage to get about 80% of my Christmas cards sent, thanks to my Dad and our own little assembly line. The 20% of you who have yet to receive your Christmas Cards can expect some lovely holiday-themed “Congratulations it’s January and Not 150 Degrees Below Zero Outside!” cards very soon....

I also started taking the Low Dose Naltrexone on New Year’s night (A HUGE Thank-You to Michelle and Tim for ALL your work on this for me) – I thought it was a great and very symbolic day to start what I am affectionately referring to as “my progression to remission”.  It took some problem solving to get a script for this medication in Saskatchewan – I actually had to do a Skype consultation with a doctor from New York and have my family doc sign off on it.  The dispensing pharmacist was incredibly positive about LDN and it’s potential to treat a variety of different diseases, including canser. (Purposely misspelled – just my own little bit of rebellion – not giving it anymore respect than it deserves.)

The past week has been spent going to many medical appointments, a two-day visit from my sister and niece and some spa pampering.  I finished my last IV Vitamin C infusion this past week, visited my chiropractor for some help with some relentless and very nasty residual back pain, and had an informative and very positive appointment with my surgeon.  First of all, he gave me the green light to drive again, so I am no longer trapped in my house! Wahoo – FREEDOM!  He also instructed me to get back to the gym and enjoy the occasional glass of wine, should I so choose. Funny, I was under the impression that since he cut out a good portion of my liver, that avoiding alcohol was a bit of a necessity – but turns out I was wrong.  Hmm, who knew? THAT would have been a handy little nugget of knowledge on New Year’s Eve, drinking Raspberry Cider while coveting the champagne that made it’s way around the Cory dinner table.  Ah well, there’s always next year!

This week has been challenging aside from me and my health.  My family lost one of it’s most beloved and revered members on Thursday evening, my Auntie Leona. She was an amazing woman, who left an incredible legacy in the form of a very large and loving family.  I am incredibly grateful that my chemo schedule will allow me to attend the celebration of her life tomorrow.

Which brings me to....CHEMOTHERAPY week.  Yikes. I would be lying if I said that I’m not a little anxious about this whole process, but luckily I have had some incredible advice and support from some of my gals (Nancy, Barb, Diane, Heather and Anne) who have and are kicking canser’s proverbial posterior. And let me just say that I couldn’t find a group of stronger broads with whom to align myself on this journey.  SO, Monday morning Dad and I will head up to Prince Albert to attend the funeral – getting back to the city by 2:30 to pick up Tim from the airport.  Monday night is date night, so if you need me you could find us fattening me up at the Granary and watching a mindless movie @ Galaxy.  So good and so normal.

Tuesday morning will be filled with an early morning chiropractor appointment, a physiotherapy appointment and a long leisurely afternoon at the canser clinic with Tim and Kristie, being infused with a chemo cocktail designed  to nuke the little trouble-makers who seem to enjoy squatting and reproducing in my liver. Being my first treatment, I will get a private room – which is lucky b/c I’ve noticed that one of the side effects of my canser is a complete and utter lack of interest in filtering my language.  It would seem that I swear like a trucker these days and wouldn’t want to offend my new peeps on the first day.  Hmmm, not very lady-like, but I don’t really give a damn.   Unfortunately Chantelle is away at meetings the day of my treatment, so she is planning to participate via electronic chat (not easy for a self-proclaimed control freak) and I am planning on taking my camera to record the day’s festivities for posterity.  Although my chemo plan is pretty aggressive and I am confident it will be effective, side effects are very much an unknown at this point.  The research I have done indicates that comparatively speaking, my cocktail is a relatively mild program with respect to side effects, but everyone reacts differently and all I can do is hope that any side effects that do present themselves are manageable. 

So, here we go with Phase II of my mission.  Thank you all for your continued interest and support – everyone of you has at one point or another given me another reason the beat this thing. 

Bring it ON!

Barb

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