Friday, December 17, 2010

Happy Holidays

I guess some of you have been wondering about how I have been doing since the last treatment but it's taken me some time to write about it because once I feel better after a few days, I don't think much of it anymore. My chemo was in the afternoon and I chowed down before treatment and ate 3 bowls of congee (not at the same time!) when I came home. The nausea wasn't as bad as the first time since I was able to eat something afterwards but I still did feel pretty nauseated--it just started later. I only vomited once and then went to bed for the night around 11pm. The next morning I was already feeling so much better and could have the usual soup to ease the stomach. The recovery process was about the same amount of time and by the 5th day, I was feeling normal again. Since then, I have just been busy with the usual holiday stuff of Xmas shopping, seeing friends, and going out. Normal life has to return quickly because the 5 days I am in bed, Elt has 3 kids to look after including me (the worst kid ever) and I know the strain it has on him. I know my requests for drinks and having food reheated can only last so long before he notices I am more capable, hehe.

We did start the injections and my poor sis couldn't help but let out a little gasp when she saw that the syringes were just normal ones and not the short needles she was used to with the gestational diabetes. We watched a little "how to" video on the computer, the nurse reviewed the process, and then my sis did it. Not really bad, just like any flu shot but I have to have one every couple days--7 times total for each chemo cycle. We laugh every time we do it because we try to pick the least painful spot which they recommend around the belly button area (has most fat), but a little pinch is unavoidable. I'm a guinea pig at times, trying different spots and techniques (faster/slower) to see which hurt the least. By the time we get the hang of it, we won't have to do it anymore! I know I'm just being a big baby about it but it's just that I hate needles and it's NOT my cup of tea.

Our appointment with the genetic counsellor was really interesting so if anyone would like more information about that, let me know. The results will take two months, not three, and I will only have a 10% chance of being a carrier of a mutated gene. The results will impact my decision on the mastectomy but most importantly, on whether or not I will need to remove my ovaries since having the gene would predispose me to ovarian cancer by 45%. Ovarian cancer is very hard to detect and there is no screening test for it so removal of the ovaries would be an option for the future.

I have gotten used to wearing hats in public and prefer not to use the wig (don't mention to Elt!) The half wig is made of synthetic material and can get super hot around the neck. I can't get used to the bangs on the regular wig so if I was going to put a hat over it anyway, I might as well not wear it. When I am at home, I always wear a hat because otherwise it feels like my hair is wet or something--very breezy up there. My hair is so short, it doesn't come out very much in my hat unless I am showering so there is no mess. I am glad I cut it when I did and haven't regretted it since.

Many people ask me how I am doing and seem concerned even when I tell them I am doing fine. Maybe it doesn't seem as if it should be that "easy" but truthfully, I don't have any negative thoughts. I don't focus on whether the tumor feels smaller or whether my hair has completely fallen out yet. It's more of a passing thought like "Oh yeah, I have a horseshoe thing going on my scalp now!" I'm definitely more preoccupied with day-to-day things with the family and am more appreciative of every little moment that I feel great and can do what I want. It sucks to have to lay in bed and have the kids come to me but at the same time, I know that I will feel better the next day so I just look forward to that. Once I feel better within that week of chemo, all the side effects go away and stay away.

My next treatment is Xmas eve which isn't ideal to say the least but I will be celebrating a day earlier since the kids have no clue about dates anyway. Although I will miss Boxing Day shopping (the saddest part of all), I am not bummed out about it because I feel so grateful for all the generosity I have received in the past two months from friends and family. I am guilty for the attention because I feel good for the most part yet the cancer perks keep coming! I know that a major part of my positive mental health is due to all the support that I have and I want to thank everybody again for being there for us. This has definitely been a group effort and I won't ever forget your kindness.

Happy holidays and wishes for good health in 2011!

Love, J

Thursday, December 2, 2010

Doctor's Visit

I had a routine visit with my oncologist today to test my white cell blood count (level of immunity) before chemo tomorrow. She said my cells were a bit low at 1.2 instead of the 1.5 minimum. This has no bearing on me receiving the chemo itself so we will go ahead as scheduled tomorrow. However, it does means that I will be needing self-administered injections starting 5 days after chemo to boost my bone marrow to produce more white blood cells. The chemo drugs lower your white blood cells so the doctor wants to make sure there will be high enough levels for the next round. The drug costs $150/injection so for this cycle, it would cost $1050! Don't worry, it should all be covered by extended health so we won't have to pay for it. Whew! I hate needles so I definitely won't be injecting myself and will leave it up to my sis who had the pleasure of using needles during her gestational diabetes earlier this year.

My doctor felt the tumor and didn't feel there was a huge difference in size. She said it was not unusual for my type of breast cancer and that as long it was not growing, we were making progress. She felt like the tumor was a bit more moveable but this could be due to the fact that in my last visit, I still had milk in them. It has even been hard for me to tell if the tumor has shrunk because the milk pushed it more to the surface, but I do know that it has not gotten bigger.

The other thing we talked about today was the mastectomy--single or double. The surgeon had already discussed this with me before and said that the cure was in the chemo treatment, not the mastectomy. She said a double mastectomy in my case would be more of a personal choice, rather than a necessity. People that get double masectomies either have a strong family history of breast cancer or they carried a mutated gene that predisposed them to the cancer. Genetic testing is a long process (3 months for results), is only available for certain patients, and has a waiting list. Since I am under 35 years old (which they consider unusual), I qualify to have the test done. My oncologist told me she would expedite the request for the test since I will be making a very important decision based on the results. To my surprise, I got a call within 4 hours of leaving the office and was booked an appointment for tomorrow noon!

So it will be quite a long day tomorrow out in the west side. I have a two hour break in between appointments so I will eat a hearty meal before and after chemo and hope I do better this time.

J

Wednesday, December 1, 2010

G.I. Jess

So I took took the plunge today and cut off all my hair. My hairdresser was generous enough to offer her services so of course I took the opportunity to have a professional do it. It was definitely not as simple as I imagined it to be since she took the time to trim down my hair first before using the buzzer. I'm not completely bald because you would need a razor to do that, but there's short stubble all over. I don't think we could've done it ourselves (and understandably, Elt was not up to the challenge) so thanks, Sue!

Since my last blog entry I had lost about half my hair. I could've still wore it out no problem since you couldn't really tell unless you lifted up the sides. I guess even though I was avoiding it, I wanted to do it before Friday's treatment because I would be in bed when the rest of hair would come out anyway. I didn't even wash it the past few days because there was no point in making matters worse. Also, I clipped it up to keep it less messy since it was hard to keep Liam's hands out of it when I held him. I was like Charlie Brown's tree where every little bump would create a pile of needles.

So how does it feel? Well, the whole thing was rather anti-climatic. It didn't make me upset at all like I thought and it's just a new me that I have to get used to. I have been wearing a cap at night to keep the hair in place so we are all used to how I look in it. Without the cap, I will admit I look a lot tougher than before and I'm sure if I put on some camouflage, people would not mess with me! My head feels like the soft side of velcro when I run my hands through it. Aidan was there the whole time and he didn't seem upset or scared. I don't know what he thinks about it but I had mentioned the wig and cutting my hair over the past couple of weeks so he was expecting it to happen. Liam gave me wide eyes when I took my cap off to remove the wig, but when I put my cap back on, he was okay. Elt really likes how it looks and actually prefers me without a wig or cap. Although losing hair is the most physical sign of cancer, it is the least painful. Other side effects of chemo are worse and have longer effects so I am more concerned about those. The good news is that my showers will be down to 3 minutes, and we'll be saving a lot on shampoo and electricity from hair drying and straightening!

Early tomorrow morning I go in for testing and then see my oncologist for a report on the progress of the first treatment, so keep your fingers crossed.

J

Monday, November 29, 2010

Hair, Hair, Everywhere

It has been a while since I have written but no news is good news, right? :) A week after the first treatment, I felt completely back to normal--no hunger or headaches. My energy has been back as well as the belly I lost. I have been busy Xmas shopping, cooking, cleaning, and spending time with the kids. After getting accustomed to a full week of both moms cooking and cleaning for us day and night, we were rudely awakened with the return of "normal life" and having to clean up after ourselves. It was hard to admit that we really didn't need the extra help anymore (although there were times of weakness when we still called on Elt's mom to help us clean, haha).

Liam just turned 1 over the past week. Even though he's 1, he's still a baby in my eyes because he can't physically do a lot of things that Aidan could do at his age. Liam just started crawling on all fours a day before his birthday so he's finally getting around the house more without his walker. He's actually just discovered the fun of opening/closing doors, although he's trapped himself in the bathroom a couple of times. It's like a new world opened up to him since he couldn't really get into things as much in his walker.

On Friday, my hair finally started falling out. I don't know what it is with Fridays but that was the same day I was told about the cancer as well as the day I get my chemo treatments. I think I have probably lost about a 1/3 of my hair so far but it's only slightly noticeable. If I run my fingers through my hair, I can get quite a bit come out. Kinda like after having childbirth when your hair starts coming out again except it's continuous throughout the day, not just after a shower. My plan was to shave my head when it started falling out because it takes less than a week to be bald, but it's definitely easier said than done. You can't help thinking a)Maybe it won't all come out, and b)It doesn't look that bad yet. I know I have to do it before Friday because I have chemo and I don't want to deal with my hair while not feeling well but I will put it off for as long as I can. I guess it'll be the first visible sign of being a cancer patient and nobody wants to walk around with that tatooed on their forehead. Whenever it does happen, I will promise that I will not be one of those old guys with like 4 strands of hair combed over from ear to ear and have it flap wildly around in the wind. Somebody better arrange an intervention if that happens!

J

Friday, November 19, 2010

Hunger Strikes

It has almost been a week since my first treatment and I am feeling much better. After the first two days of staying in bed and eating only congee and banana, I have been regaining strength every day. Yesterday, I went to drop Aidan off at school and did a stroll through the mall. I have a constant feeling of the onset of a headache or sinus pain but it is tolerable without having to take any meds. Besides needing an afternoon nap during the day, my energy level is pretty good and I am sleeping well at night (when Liam doesn't wake me up).

The other thing that has been pretty good is my appetite. Although I can't eat a huge amount in one sitting, I am hungry quite often so I have been eating up a storm. The hunger is very much like pregnancy hunger in that it's in the pit of your stomach, and it's an emptiness that needs to be filled immediately. When you are pregnant, you can eat food you crave but then feel sick afterwards. However with chemo, I don't feel sick after eating so pretty much anything goes! Elt has been keeping a watchful eye on the food supply and is always prepared to whip up something in a hurry when he hears me hollering. I have been "snacking" on curry chicken, lasagna, pizza, sub sandwich, macaroni and soup, veggie soup with rice, fish and chips, fruit pops, dumplings, and even quesadillas! Pretty random things in general but just filling up on whatever's available. I still have lost a couple of pounds so I know how much I have to eat to keep up with my body's constant need for energy. Since there's no worry about gaining weight, I'm going to take what I can get and enjoy eating what I want. Now I better head off to bed before I get hungry again...

J

Sunday, November 14, 2010

First Day of School

Just like all first days of school, even though you are prepped with schedules and programs, nothing ever turns out as expected. First, I had an appointment for a chest x-ray and a ECG. These were totally different departments and I needed to check-in at both places. The chest x-ray was easy, get yourself into a gown and stand in front of a plastic board and get your picture taken. Took 1 minute. Then I went across the hall for the ECG which tests your heart for any abnormalities. Again, get undressed and put a towel on your chest. I lay there as a technician places small black stickers on different parts of my body--legs, arms, breast, and chest. Then she takes out this power bar with octopus arms that have clips on the ends of the wires to attach to the stickers on my body. I hold still for a second and it's over.

A half hour break and we're back in another area of the building to meet my oncologist who switched offices from my last visit. She pops in to tell me that my CT scan was clear (yea, only cancer in the breast!!--As Jackie says, this is our twisted humour these days), and if I minded talking to her resident first. Of course, I had to remove my top yet again for the third time, cause who doesn't want to take a look?! So in our discussion with the resident, we find out that the handout that outlined my treatment was the WRONG handout given to me! The original 15 months of chemo that was in the handout should've been only 6 months! To give some background, my chemo cocktail is called ACD. However, they have two handouts, a ACD, and a ACDT. Well, tack on that T and it adds 9 months to the treatment so again, I celebrated, "Yea, only 6 months of chemo!!" So my oncologist said that everything looks well in my heart and chest from tests that I took earlier so we could go ahead with treatment today.

We took a brief lunch since we were to return at 2pm for a "teaching" session before proceeding to the actual treatment at 4pm--well, that's what they told us anyway. So of course, after asking two different people where we were supposed to check in, we finally get to the right place where I meet our nurse. She takes us to a room that has 4 pastel green vinyl reclining chairs, peptol bismol curtains, and beige everywhere else. I turned to Elt and vowed that if I were to win the lottery, I'd come back to renovate this atrocity. Where's the sounds of the tropical rainforest and dim lighting? While I strip the room with my eyes, she starts wrapping a towel around my arm, asking me how I'm doing, and I'm like, "Uhh...are we doing it right now? I thought this was a teaching time?" She's like, "Oh yeah, we bumped you up from 4pm. We usually just do the talk with you at the same time so don't worry." I take a second to wrap my brain around this and we go on with it like everything else this past week.

I was given 4 anti-nausea pills before we got started. For the first 4 cycles of treatment, I will be getting the AC drugs (the ones that cause nausea and hairloss). The first one gets injected into the IV by a 2 giant syringes filled with red kool-aid (yes, I was peeing kool-aid). The next drug was just given by an IV drip. Whole thing took abut 2 hours. I felt fine on the way home and ate some crackers but should've just eaten a hearty meal instead. By the time I got home and lay down to rest, I started feeling the nausea creep up. I was warned time and time again about keeping my stomach full, everything's a learning curve. I only got sick once which wasn't bad at all considering. I stayed in bed for a full day but today, I ate macaroni in soup and even got out around the house. After staying a full day and night at my aunt's place, Liam looked at me as if I was a huge lasagna and he was Garfield! He couldn't get enough of me so I can't last too long in bed, even if I wanted. Aidan seems to want a bit more attention today than usual but all is to be expected. I told him briefly today that I had a "bump" and I let him feel it. I told him the medicine was going to help make the bump smaller and that's why I was tired. He rolled around and went back to Ratatouille. The only real drama we had today was when the iPad was misplaced for 5 hours!

My family's been great helping this weekend and my mom came back today so it's going to be much easier with the cook in town. Thanks for the emails and texts.

J

Thursday, November 11, 2010

Week 1

What an exhausting week it has been! Actually, it hasn't even been a week yet since I was diagnosed but it feels like it has been much longer. First I did what I do best and got organized.  We thought about the things that would make me most comfortable in preparation for treatment so we got an iPad, a flatscreen t.v. for our bedroom (long awaited purchase!), and wigs (which costs way more than the t.v., I might add). We also started the paperwork on our insurance claim for "critical illness" which was an extra option I ironically qualified for because I had a high health score. We are fortunate to have taken that option on our insurance since it will be a huge help financially and is one less thing to worry about.

I also had to do a bunch of tests like blood tests, a bone scan, and a ct scan, which check for further spread of the cancer. So far, the great news is that my blood work came back normal and the bones look good. My doctor is also sending my biopsy slides from RCH to the cancer agency to be reviewed by their pathologists for a second opinion as a precaution. Tomorrow I will see my oncologist at the cancer agency who will review all the tests and prepare me to start treatment.  My first chemotherapy session is scheduled for the afternoon after my visit with the doctor. Although I am wrapping my brain about starting chemo tomorrow since I was expecting it to start Monday, I am ready to begin this journey.

Thank you for all the emails and words of encouragement.

J

Message to colleagues - Nov. 6

Hi Everyone,

First, I just want to thank everyone for the overwhelming welcome I received this week during my return to work. I have missed you all (not the work!) and coming back just reminds me of the great feeling of being part of a real team of not only coworkers, but friends.  I was excited to come back only part time since my nightmares of carrying a watermelon in my belly and trying to unpack photocopy paper was still a bit fresh. The best part was missing out on team meetings AND staff meetings (no offense, KY)!!  However, things have drastically changed for me in the past 48 hours and I am sorry that I will not be coming back after all.

On Friday morning, as some of you know, I abruptly left work in the morning.  This was because I had received an urgent call from my doctor to see her immediately. I have had a large lump in my breast examined over the past month with scans and biopsies, and it has been confirmed that I have breast cancer. This news is very hard for me to tell since we have all just celebrated Jackie's news of such an incredible recovery and how could we come from such a high to such a low? In a span of 4 hours, I was diagnosed and sent to the cancer agency where I met my oncologist and was given the preliminary treatment plan and a tonne of information.  I might start chemo as soon as this week after further testing.

I am over the initial shock of it all and today have started to tell family and friends. I have an incredible support system since I have a large extended family and Elt is not working (he was just given a year's severance--which he wanted so don't feel bad). I am moving forward now and focusing on what has to be done in the next year. I am fortunate to have two friends to call upon as resources--a good friend, Jenn, who has survived the exact cancer two years ago, and Jackie, both who have proven that cancer can be beat. I will take this one day at a time and look to my kids for inspiration as well as distraction!

Please do not feel that you have to "do" anything.  I know how much everyone cares and I felt the love last week when I saw all of you. Just keep the positive thoughts flowing.

Love, J