Delayed...again

Well my white cells just are not regenerating fast enough, so I am delayed for treatment #3 until next week. Apparently after this treatment they will give me an injection (apparently that I have to give myself...UGH) to help stimulate my white cell growth.

The Doctor does not want to give me less than 100% dose, so we have to delay the treatment.

For now, it's Wednesday next week...and hopefully my lil' white cells will cooperate!

Delayed

This was the post I was going to be able to write "3 down, 5 to go", but as my life has been lately, my plans have not worked out.

The Doctor said my white cell count was too low, so no treatment today. It will have to be pushed to Wednesday. I will get blood-work done again on Wednesday morning and the results of that will determine whether I can receive treatment #3 that day.

The nurse said there is nothing I can do to make my white cells regenerate faster...no eating special foods, resting, exercise, medicine or any other tricks will work. My body is responding how it wants to and it really doesn't care about the plans I have made for it.

They did say that the counts looked like they were on their way up and that they can sometimes be up to par in just a few hours. Let's hope that's the case and by Wednesday morning, I'll be able to write 3 down, 5 to go. And if you have made plans to come visit me tonight or tomorrow, well maybe just see if you can squeeze me in Wed/Thurs ;)

Enter Negative Nelly

This weekend I had friends from SF/Hult visit me. Kenji & Rina and Tomo & Mayu made the trip up to Kelowna to spend a weekend here. They are originally from Japan (well Kenji was born in Utah…) but I had attended school with Kenji and Tomo in SF.

It was amazing to see my friends from school again. We did lots of ‘touristy Kelowna’ things…even riding bikes up the Myra Canyon Trestles…something I had not yet done while living only a few kms away…(oops!), Friday night sushi dinner, boating, etc. Anyways, the weekend was great and it was so good to feel connected to my Hult friends again.

One of my Aunts called last night and as we were chatting, I let it slip out that treatment/recovery was maybe a little “awful”. I quickly reverted and said ‘well, it’s not that bad…it’s okay…manageable”. And she quickly said “Don’t put on a brave face. It IS horrible and awful.” This made me realize that I might be sugar-coating things a little bit. Sure I will say when I don’t feel well…but on this blog I have been trying to be optimistic…and that’s not always how I feel. So if you don’t want to read the next bit, I’ll call it the Negative Nelly paragraph, skip ahead to the end…but I have been hearing so much from people how I am handling this really well and that I am so honest in my blog…figured it was time to include some of the ‘not-so-fun’ parts as well.

Last week I visited the Doc for my pre-chemo check in. I had a new Doc (again), who is a GPO which is a General Practitioner Oncologist. These docs follow an Oncologist and often look after patients when the Oncologist is away, too busy, etc.

This doctor came in and asked me how things were going and how I felt after the last chemo treatment. I explained that I was okay for the first two days, but experienced really bad indigestion which led to me getting a bit sick on the third day. She said that was a common reaction and to try some laxative style foods to help push everything through my system during this time.

She asked about my eating. I said I had really bad sores in my mouth that were making it hard to eat much. She thought that it might be ‘thrush’ and that it could be cleared up with medication. Turns out, it’s not. It’s just mouth sores – a common reaction that will clear up on its own.

She then asked me how everything else was going and how I was coping. At this point, I started to cry. I just couldn’t help it. There is something about being at the cancer clinic, having new doctors/nurses/pharmacists ask you how things are going all the time, that just makes me cry.

I wanted to say: “It’s not going well – this sucks actually. I can’t eat because it hurts. I get irritated because I’m hungry. I’m frustrated that I can’t do most of the things I’m used to. I’m tired all the time and it leads to me not being able to get anything done. I discover every day that my body isn't as tough as I thought it was. I’m already tired of doing this, yet I have a long way to go. I’m scared that I won’t remember anything from my MBA course, and that when I go back, I’ll really struggle to get back on track. I’m worried that I won’t be done all my treatments/surgeries in time to head back to school in 2012. I am starting to feel disconnected from my friends from school, my friends from here, but I have a hard time keeping up with everyone/everything. I’m frustrated that everyone keeps telling me to keep really good track of what is going on with my health and my body, yet when I say what is wrong, you can’t fix it. It’s a “typical” reaction and I just have to suck it up and deal with it. It’s driving me crazy that I am so out of shape, yet am not supposed to be losing weight or doing much. My hair is gone. My port-a-cath bugs me and sticks out of my chest. Yes, I realize this is great for medical purposes, but it really sucks for my vanity. I’m tired of being the only one under the age of 50 at the cancer clinic. I’m tired of managing all the doctors’ appointments. And yes, I realize I am very very lucky and there are many others who are way worse off than me…but I’m tired of trying to figure all this out. Just tell me what to do to fix this and I will!”

Instead I say “I’m fine. I think I’m coping okay.” And I reach for more tissues.

The rest of the appointment went okay. She examined me, said things look/feel like it’s going well – apparently it’s a great sign that my hair is all gone. And then gave me a few prescriptions to try to help with my mouth and my indigestion.

I then went home and had a pretty rough afternoon. I just laid on the couch, watched tv, cried, had some soup, cried, laid there, and then cried some more. I had no motivation to do anything. It was really difficult. Cayley came over after work and was trying hard to make me smile. We had dinner and then he went and got my prescriptions filled (me having a boy’s name makes it easy for him to drop off/pick up my stuff!). While he was gone, something in me just turned. All of a sudden, I felt okay. I got up and started tidying the house. I felt better, more optimistic and again very lucky.

I guess sometimes you need to stop putting on that brave face and let out what is inside so that you can truly feel better.

Today I have to head back to the clinic for treatment #3. I’m feeling really lucky that I have such great friends who came all the way from SF to visit me. I have amazing family & friends who have been calling/skyping/emailing from overseas to make sure I am ok. I have great friends here who are coming to visit me in the next few days, and those who can’t come because they are sick, but send notes/texts/emails anyways. After this treatment, I only have 1 more of this type of chemo drug. After this treatment I get to go to Alaska to see my dear friends get married. After this treatment I will be one step closer to the end of this. Bring it on.

(and yes, I laughed at myself for being suck a dork about that last part ;) )

A smile from the NY Times

Cayley found this article the other day and said a few things reminded him of my situation:

http://www.nytimes.com/2011/06/12/fashion/what-to-say-to-someone-whos-sick-this-life.html?pagewanted=1&_r=1

It's from the NY Times and it's titled "You Look great, and other lies" or "What to say when someone is sick".

It made me laugh and part of it really hit home with me. Have a read if you like - the guy who wrote it has a really good way of making it funny, yet really realistic.

Medium update 3 - Alaska

While I was at the cancer clinic last week, I asked two of my doctors on what they thought about me traveling while on treatment. I love traveling and seeing new places, but I also don’t want to put my health at risk and knock my treatment off-course. However, I had some really great travel plans made prior to being diagnosed so I really needed some advice on what to do.

Going through this has been really tough, but I am trying really really hard not to let it change who I am too much. Yes, I am more of a hermit these days, I rest a lot more, and I forget things a lot quicker. At the moment I can’t be as active as I normally am, and I am limited to the time I should be in the sun. But I still feel like I am mostly the same – the activities can resume next week after my “6-weeks of doing nothing but walking and riding a bike to protect my surgery” are up. I do get out to events to see people, I just don’t stay as long. But traveling was one thing I was always doing and now…well I just don’t know if I can.

To top it off, this wasn’t just traveling to sight-see or explore a new place – the kind of travel that can be done at almost any time. This was traveling to see two of my dear friends get married in Alaska (ie you can’t just go whenever you want…there is a specific day attached to a wedding!).

Two major concerns with this travel – a.) being on a plane for that long increases my chances of catching something that my immune system is not prepared to fight right now, and b.) it’s a different country, where my Canadian medical coverage is not valid.

I asked two of my doctors if going was a smart idea or not. Dr. Mohamed – the radiation doc – said that he didn’t think it was a good idea. I had prepared myself for that response, but it still didn’t stop me from shedding some tears in his office. He said that I should ask Dr. Taylor – my oncologist – as she was more closely tied to my treatment at the moment and she would have the final say.

As I may have mentioned before, Dr. Taylor is a great doctor and her style is very cut and dry. I love that about her as I know I can trust that when she says “no” it means no and there is no changing her mind. But when she says “yes” it means she truly thinks it will be okay for my health.

Not to bore you with the details, but Dr. Taylor said it would probably be okay and I could go! I have to be super careful that if I am getting even a slight fever, to rush straight to the hospital. Other than that, take some precautions while I am traveling (ie wearing a mouth/nose mask on the plane, washing my hands constantly, etc), and it should be okay.

A nurse called me a few days later to check-in and I asked her about traveling as well. She said one of the most important things I can do is have fun and do things I enjoy. She said to take precautions, but to really enjoy myself and my time with my friends as it was an important part of getting me through this as well.

So next weekend I’ll be packing a small bag, a fun dress, and lots of anti-bacterial wipes for my trip to Alaska. My only goal for this trip is to make the two wedding activities...oh and to try and stay out as late as my friend who is 5.5 months pregnant with a 2 year old in tow ;)

Small update 2 - Dietitian

The dietitian from the cancer agency called me early this week to discuss how I can help my body throughout this whole ordeal through my diet.

Lesson #1 – Protein is the name of the game.
Apparently cancer cells like nutrients, so they rob your body from what it would normally take from what you eat. This means the nutritional requirements while undergoing this treatment are way higher than they normally would be. Specifically, protein gets depleted quickly. In addition, chemo is really hard on your body and to help it repair faster protein is the key. It will likely be like that for recovering from surgery as well. The dietitian said it was really important for me to have some type of protein at every meal.

Lesson #2 – weight needs to remain stable.
Basically, if I am losing weight, it’s not great and if I’m gaining weight, not great. If I start to go down, time to bring on the fats – likewise if I start to go up, time to lower the fat intake. She did point out that heart healthy fats are best – veggie oils, seeds/nuts, avocados, coconut milk, etc.

Lesson #3 – avoid high doses of vitamins and antioxidants.
Two reasons for this – 1.) cancer cells like high concentrations of vitamins such as Vitamin C, D, Calcium, and if you take a pill form of the vitamin, it can make treatment not as effective. 2.) high doses of antioxidants in pill form will hinder the performance of the chemo drugs. So basically, get my vitamins through the food I eat.

We also talked about my eating habits before I was diagnosed vs now. Since early 2010, I had tried to eat a more “vegan-ish” diet – no dairy, no meats (other than fish), and I also tried to really minimize my sugar intake. I did this to have a more healthy diet and try to keep diseases at bay. I wasn’t a ‘perfect vegan’ – I did eat fish after all, and I’m not going to lie, Mac&Cheese often got the best of me during late night study sessions. (I blame that all on Trader Joe’s and their amazing microwave-able mac&cheese!). Cayley came up with the perfect term for me – a “con-vegan”, as he said when it was ‘convenient’ for me not to be vegan (ie Mac&Cheese attack!) I wasn’t. ;)

However, that eating lifestyle will have to be put on hold for the next little while. The dietitian said that right now, while I am not eating the quantity I used to, my body needs all my food to pack the biggest protein and nutrient-rich punches it can. She said to let myself eat whatever my body wanted, and to ensure that protein was ALWAYS in my diet. Animal products have the most ‘complete’ proteins (easier for the body to use more efficiently), but plant-proteins and protein powders are a way to go as well. She did say that once I was done all this to go back to the way I had eaten before, as it was a very healthy diet.

Good news is, cheese packs a bit of a protein punch…let’s just hope Kelowna gets a Trader Joe’s in the next few months ;)

Small update 1 - Radiation

I’ve had a few updates last week and this week, so I thought I’d write a few small posts to break up the text.

Radiation

I had an appointment with Dr Mohamed last week to discuss another part of my treatment plan, radiation. He is a very well respected doctor at the cancer clinic and he’s also one of the doctors that looked after my mom years ago.

My Aunt will likely tell you that back then he was very handsome and had a really soothing voice that made it hard to pay attention to what he was talking about. Well, things haven’t changed much…he’s still very handsome with a really soothing voice – but for me his direct communication and caring nature really made me pay attention to what he was saying. There is no doubt in my mind that this doctor is very smart, very experienced, and cares for his patients.

Dr. Mohamed said that it looks like I will have to receive radiation for 5 weeks, with it occurring 5x/week for a total of 25 treatments. Apparently the whole appointment only lasts 30 minutes, but I need to go every day.

We didn’t talk too much about the exact plan, because right now there isn’t one. I may or may not have radiation treatment right after chemo, or surgery might go first. I might have to wait until my chemo is done, or radiation might interrupt chemo treatments. It really all depends on how my body reacts to everything.

For example, if my body stops reacting to the one type of chemo I am on right now, they will switch to the 2^nd type. If it stops reacting to that, I will start radiation right away. I guess the goal is to get the tumours completely out before surgery. But I’m not 100% sure on that one. For now, I have another appointment to see Dr. Mohamed during the first week of October, as that is when I should be done chemo.

One side-effect of radiation is that your skin/body will react like it has just received a really bad sunburn. Sun damage is cumulative, so to minimize the effects of the radiation I need to wear sunscreen on my chest and shoulders all throughout the summer. I’m on the hunt for those ‘rash-guards’ that surfers wear to protect their skin from surfboards – they often have SPF in the clothing. They are also made out of a material that makes it easy to swim in the water in.

The kicker is, the ones made for women are often UBER short and as we all know, that is one thing I am not. If anyone has any ideas/leads/or stores to try, please let me know!

It’s all in the genes…or is it?

Yesterday I had a call from a Genetics Councillor at the Hereditary Cancer Program at the BC Cancer Agency. Some of you might remember that I had been in touch with them in late 2009 to see about getting tested for the BRCA1 & BRCA2 gene mutations. With my mom, her mom, and her cousin having had breast cancer, it seemed like a good thing to look into to see if I was eligible to help with screening and prevention measures.

January 2010, my Granny helped out my pursuit and went and gave her blood sample to be tested to see if they could find any mutation in her sample. Those results came back this year, (ironically, I received them in the waiting room for my first doctor’s visit to see about this 'lump') and it was found that my Granny had no mutations in her genes. This likely means that I don’t either.

Or do I? Well, that’s the decision I now have to make: should I get tested to see if I have this gene mutation? There is a small chance that my mom had it passed down from her dad, or that my dad has it and passed it along…however, the chance of me having it is still very small.

Going for this test is a weird decision. They said they would rush me so my results could be in by mid-August, as it might affect the way I choose to do surgery treatment. If I do have the mutation, it means my risk of a 2^nd cancer episode are higher also that my chances of getting ovarian cancer are higher.

Also means that insurance companies could turn me down for a variety of insurance policies…although, the Genetics Councillor told me that “a cancer diagnosis trumps gene testing”, so it’s unlikely I will get the coverage anyways.

What would I do with this information if I knew? Would I get a double-mastectomy “just in case”? Remove the ol’ ovaries to make sure they don’t get ‘sick’? Or nothing – and simply continue on and screen for cancers like I normally would? How would this affect my brothers (if I do have it, do they have it?)?, My dad? And honestly, why, when I should be making this decision, do I start thinking about something normal like “wonder if we will get in to Sturg to watch the game tonight”? ;)

Something to ponder over the next few days. Next up - a consultation with the Radiation Oncologist.

Remember to cheer loudly for the Canucks tonight!

Germies and me

A friend pointed out that I need to let people know about me and germs...so here it goes: Germies and I are NOT friends.

Typically I rarely get sick, so you can imagine my surprise when I managed to catch strep throat, when no one I knew even had a scratchy throat.

The message from the Doc - do not go near anyone who is even remotely feeling "off" as my immune system is really compromised at the moment, and will be for the rest of my treatments.

With that being said, please do not take offense if we are out and I have to leave if someone is feeling a bit sick or 'cold-like". Don't be upset if I can't come out and join the fun...trust me, I really want to, but I just cannot jeopardize my health any further than it already is. And please, if you are not feeling "top-notch", let's save our visit for another day.

Fortunately, hangovers do not count...so if you are feeling "off" after a night out on the town, I still expect you to get out of bed and see me ;)

Day 2

Yesterday was treatment #2 for me and it went a lot smoother than the first time. The port-a-cath makes things run a lot smoother and I was out of there in around 2.5 hours. Dad and Cayley came with me again but I had a new nurse this time. I guess I will get a new one each time, depending on who is working that day. Her name was Danielle and she was really nice as well. Also from Saskatchewan so Cayley of course likes her too.

Felt pretty okay yesterday…just a some instances of feeling nauseas and having a bit of a headache, but overall, not too bad…that is, until the Canucks forgot the game lasts more than one period! D’oh!!! We’ll get Boston in game 4!

Had a fairly busy weekend and for the most part, it was nice and normal. Met some of Cayley’s extended family, went to a terrific bridal shower for my friend and subsequent stagette, had a nice family dinner with the crew (steak Sunday got move to Saturday due to the Canucks game), and then headed out to say goodbye to an old friend for his last day of work.

My friend had worked/owned this restaurant downtown for around 9 years and it was the location of many good times. So we popped by to have a drink and share a few laughs. It was great to meet up with some of the old crew and reminisce and I will definitely miss some of the fun times we had there.

I said goodbye to another old friend this weekend, my hair. I thought I would be very vain…never showing anyone my head, wearing a wig at all times, etc etc. Well that lasted about a car ride home of wearing a loaner wig. My poor scalp is so sensitive right now.

So far, it’s not my favourite…I really don’t like going out wearing a scarf or a hat. You can try and say no one will notice, but then I look in the mirror and it’s so obvious. The wig I got is not the greatest, and my custom one isn’t in yet, so I went and got another one for when I have to go out. The hardest part is, I feel so normal until I look in the mirror. I am sure I will get over it quickly…heck, I’ve already shown it to 3 more people than I thought I would ;) But it definitely gives me a lump in my throat thinking about going out. Even going to the cancer clinic yesterday was not a great feeling, and those people see folks like me all the time.

But I will have to suck it up and put on something for heading out tonight, as I will be attending a workshop on how to “look good and feel better” when you are going through all this stuff. Thankfully, my dear friend will be accompanying me, and if nothing else, I’ll get to experience first-hand some of the really great work I had been promoting for all those years at the Canadian Cancer Society.

2 down, 6 to go.

For all the boys in my life...and people who like gross things...

This post is short...intentionally...I find the picture a little "gross", but Cayley made me take it...

Yesterday was Day 2 of my chemo treatments. And the first time we tried out the port-a-cath implant. Cayley and my Dad were with me, and are both fascinated with the device. What is it with boys? My brothers are both really interested as well...they learned all about the port-a-cath from the cartoon "Archer" and are just stunned that cartoons aren't exactly accurate...weird ;)

Anyways, here's the picture...I'll write more later so you don't have to look too long ;)

Small wins

As Canuck fever is sweeping BC, I find myself thinking about winning…but not about ‘grand-prize’ winning (like the Canucks will win the Stanley Cup!), but about ‘small wins’. I mean, the Canucks surely had a goal of winning the cup this playoff season, but to get there they needed to beat the Blackhawks, the Predators, the Sharks, and now the Bruins. And each of those series requires 4 games of winning. Each of those games required 3 periods of play, 20 minutes each, of playing hard. There are ups (hard hits, goals, amazing saves) and downs (being scored on, sloppy play, losing the game). Each period/game/play can result in a “win” or a “loss”.

So why am I bringing up the Canucks and hockey? Besides the fact that I am Canadian (and that’s all we think about right???), I’m starting to think more and more about celebrating the small wins. My treatment is going to last a lot longer than I would like and likely going to be harder than I can even imagine. However, there are some small wins to celebrate!

My Aunty Carol came to visit me this week and it has been amazing to see her (and no, I’m not just saying that because I know she is going to read this…). We have been visiting, going out to eat, shopping, getting pedicures, watching the Canucks (and by the way, she predicted Torres would score the winner last night!!!), and just hanging out. It’s been really great to have her here, even though I couldn’t provide better weather :(

We also went to my Doctor’s appointment yesterday. Things went well – the doc thinks the lump has regressed from moving toward my skin’s surface. She is a bit concerned about my throat still hurting, so we are pushing my next treatment until Monday. This was a small win I really needed. Being treated on Friday was fine, but then if something was going a little “off” on the weekend, I’d have to call emergency. Not my favourite thing to do. This part really stressed me out and I’d wait until the last possible minute to call…again not great. Now, if something goes awry, I can just go to the clinic and see the doctors or nurses who know my situation.

It also makes me feel a LOT better about upcoming weekends. I will get to attend my friend’s wedding shower on Saturday, my friends from school will be visiting in a few weeks, there are plenty of weddings to attend this summer, and I should be feeling okay for most of them. Talk about “small wins”!

Anyways, I’m feeling a lot better and more informed about my upcoming treatment plan, but there still is a lot of “let’s wait and see”. So I will continue to try and celebrate the small wins and maybe even enjoy a few weekends! In the meantime, I’ll be cheering hard to help the Canucks celebrate their BIG WIN! Go Canucks!