Happy Halloween!

Xeloda – Day 4

Well I’m glad to say I don’t have much to report when it comes to Xeloda side effects. The odd time I have a gurgle in my stomach but really that is all. I’m careful to eat small non-dairy meals and so far so good.

My biggest challenge has been to eat as soon as I wake so that I can take my chemo pills shortly afterwards. Prior to this week I’d probably have my first bit of food around 10:00 in the morning and even that might just be a fruit or a bit of yogurt. The pharmacist said I should take Xeloda within 30 minutes after a meal … and a fruit just doesn’t cut it as a meal.

5 basics that are critical to surviving a breast cancer diagnosis

I've been spending most of this past weekend thinking about ways to change the blog to make its impact larger on the world. I learned a lot at the Blogworld conference and I am really trying to apply what I learned and just grow. Today, I focused on reviewing all the old posts from the blog...and I have been tearing up and crying for hours.

My goodness....this has been a bumpy ride.

Reading through all the old posts and comments was an amazing insight into the journey with breast cancer. I have learned a lot. And will post a lot of the information that I've learned on this blog in the coming days and weeks.

5 basic things you (or your loved one) will need to get through your breast cancer diagnosis:

Let's start with 5 basic things that you (or your loved one) will definitely need to get through a breast cancer diagnosis.

1. A support system -- I know that the world believes that women wear superhero capes under their clothes, but the truth is that a support system will be critical in the course of your treatment.  Put your pride aside and pull together a list of people that you can trust and count on. Consider this a starter list because...as time and treatment goes on, you will find that people you thought you could count on will be unable to help and people you did not expect to be in your corner might become your strongest supporters. Your list of supporters will change and grow as time goes on.
2. A notebook or journal -- Getting a diagnosis of breast cancer is almost like getting a crash course in medicine. You're going to be hit with a lot of information and depending on how you process things under stress, you may not remember it all. Take your notebook/journal with you to every appointment and jot down notes during your appointment. Use your notebook to jot down questions that come to mind between appointments. Also, your notebook will be critical in assisting you when you deal with your insurance company.
3. An appointment partner -- you can have one steady partner (like a spouse, significant other, best friend) or you can rotate between a really close group of friends. Whichever works best for you. But try not to go to your appointments alone. A second (or third) set of ears and eyes during your appointments is necessary. You're going to miss some information. The sooner you accept that, the better. Bring someone with you that you trust so that you can compare notes.
4. A calendar -- appointments are going to happening quick and fast. You need to carry a calendar with you to your appointments so that you can schedule appointments with relative ease.
5. Permission to grieve -- I think this is the most important part of preparing for your breast cancer journey. Look, I have to be honest. This thing is HARD. It changes the way you look at yourself, the way you look at life, the way that people look at you. Your whole world will be different. Not necessarily horrible but definitely different. You may want to cry. You may want to shout. You might want to scream. Do all of that. Do more than that. Give yourself permission to grieve and cry... don't try to be stoic all the time. You're going to have to learn how to give yourself permission to be weak...because that is where your strength will come from.

These things may not seem necessary but when I reflect over my journey...these are the critical things that helped me get started on my journey.

Xeloda – Day 3

When I brushed my teeth last night I had a little blood on my toothbrush so the gums are getting a bit sensitive. My eyes are still watering from the Taxotere and may continue to water from the Xeloda.

Today I had an appointment at the clinic to finish off the study I was on. The only concern I brought to the oncologist is that the top of my left foot was a bit swollen and sore. She looked at it and said ... let’s just watch it for now. It might just be a build-up of fluid from a pair of tighter shoes I’d been wearing, as my legs are still retaining quite a bit of water. On a positive note, since I’m no longer on Taxotere or the steroids, that swelling should go down. And that pouch of fluid under my chin should start disappearing too. My face will start returning to normal as opposed to the round faced I developed... and my chemo belly should also go down. I can’t even tell you how good that makes me feel.

My next appointment is almost three weeks away. Hooray!

Xeloda - Day 2

Last night I had a light supper and 20 minutes later I took my Xeloda pills. I went to class and really felt no ill effects of the chemo. This morning I had some toast for breakfast and then shortly afterwards, my chemo pills. It’s almost four hours later and I feel pretty good. I know this is only day two  and I'm probably celebrating prematurely but I can’t help being excited about how well it’s going. I can only hope it continues.

Some of the side effects of the Taxotere are slowly clearing up ... for example; my nose isn’t all stuffed up and runny all the time ... and I’m thinking nose bleeds are a thing of the past. I have three boxes of Kleenex in the living room so that no matter where I sit, there is always tissue within arms reach. I might be able to get rid of a couple of boxes now. My watery eyes aren’t as watery. I’m not coughing near as much as I was say a week ago. And the absolutely best part is that I don’t have to take steroids ... so no nightmares this weekend. Yippee!

Xeloda – Day One

This morning I started my new chemo pills and about two and half hours later I felt a bit flushed and lite headed. Something was kicking in but I don’t quite know what. I’m being extra careful of what I eat and drink. I’m going to stay away from dairy products for a bit till I figure this thing out. My stomach gurgles every once in a while but not too bad. The only prescription I have to help with nausea and or stomach issues is Metoclopramide. I found it helpful when I was on Taxotere and I’ve been OK`d to go on this drug with Xeloda.

Last night I slept on my stomach for the first time in about a year. The reason I avoided sleeping on my stomach is because I had either a CVC on my chest or a PICC line on my arm and I was afraid I’d pull it out in my sleep. It felt really good sleeping on my stomach and very liberating not having any attachments.

This morning I went to the ‘living with cancer’ support group. At the end of it all, I asked if anyone would like to get together for coffee sometimes. Everyone jumped at the idea so I offered to take emails and organize it. Now to find a nice central location … with parking.

A New Regimen

Today I had my appointment with my oncologist to decide on my next course of action. We are going to go with XELODA® Capecitabine tablets. I will take five pills in the morning and five pills in the evening for two weeks straight with one week off making it a three-week cycle.

So here are pluses from today's’ visit …

• My PICC line was removed. No more weekly visit to the clinic for dressing changes.
• There will be fewer visits to the clinic. I only come in once every three weeks for blood work and a doctor’s visit. CT scans will now be once every three months instead of every six weeks.
• The fluid around my lungs will go down because it was likely caused by the Taxotere.
• The bone scan taken last Thursday indicates that cancer on my ribs is no longer visible.
• The pharmacist said that the Xeloda was a popular prescription and that there were many patients on it. I thought that was encouraging. I also asked her about side effects as compared to Taxotere and she said Taxotere is one of the tougher chemos. She did not say this one would be easier but I just feel it might be. 

The clinic gave me this handy dandy pill organizer to make sure everything goes smoothly. I start first thing tomorrow morning.

Over all I’m feeling pretty excited with this new plan.

Inspiring Video

Bone Scan

Yesterday I had a bone scan done at the clinic. For a bone scan, a radioactive tracer substance is injected into a vein in the arm. The tracer then travels through the bloodstream and into the bones.

Two different people made a total of four attempts to get this tracer into my veins. The problem was that after so many years of being poked and prodded, my veins have become so very fragile and kept exploding every time they stuck a needle in. Ouch! Never the less, they got enough in my veins so that they could see my bones.

While I was at the clinic I became really chilled. I think it was from the flu shot I got the night before. When I got home I wrapped myself up in blankets, head to toe. I ended up having a short nap and feeling better.

Last night I woke up at 4:00 am with a bout of diarrhea ... likely from the radioactive tracer that was making its way out of my system.

I'm glad this week is over.

not only do I have breast cancer...but I might die BROKE too?

I am watching our First Lady on C-Span acknowledging breast cancer awareness month and speaking out about health care. She is amazing. But watching her and the other survivors who have spoken is scaring me and making me wonder why did I, why do I fight so hard for my life? Even if I survive breast cancer – which I am doing right now – I could lose everything financially trying to stay alive.

Right now, I have health insurance…wonderful health insurance that covers so much and has allowed me to receive really fabulous treatment for my cancer. But…what if I leave this job, or lose this job? My options for healthcare insurance are pretty low. Breast cancer is a pre-existing condition that, right now, many insurance companies will not cover.

Fear of recurrence is real. I will be dealing with breast cancer in some way, for the rest of my life. If I were to lose my health insurance, how would I manage my treatments? Right now, each time I sit down for chemotherapy…it costs my insurance company over $5,000. That is a discounted rate from what the hospital charges for chemotherapy. One of the patients at my cancer center pays out of pocket and it costs him $16,000 for each cycle of chemotherapy. I have no idea how much radiation costs per dosage – but considering that I was in radiation therapy for two months, I’m sure it was at least $20,000 if not more. Don’t forget all of the surgeries and incidental trips to the hospital…it adds up.

I know that after a year of treatment and surgeries…the cost is astronomical. And like I said, I have good health insurance. What happens if I lose it? What happens if I want to move my career in a different direction? Where do I turn? I don’t own anything now, so it’s not like I could sell my investment properties and use that money to keep my life going.

I feel like I’ve been hit in the head with a ton of bricks. Just a couple of days ago, I was chatting with a young man I met in Las Vegas at a blogging conference. We were discussing fundraising ideas for breast cancer survivors and patients utilizing his blog and my blog and our collective influence in our cities. We discussed trying to raise half a million dollars to aid in the fight against breast cancer. I thought it was a ridiculously high number but a worthy goal and I thought – at the time – that we could do a lot of good with that much money. But right now, I’m realizing that $500,000 is NOTHING…when it comes to the astronomical costs of treating breast cancer. It’s the equivalent of dropping a brick into the ocean.

ONE woman could use that much money to fight this disease, maybe two, depending on the stage of their cancer when found.

What the hell is really going on?

Am I fighting for my life…trying to maintain my cheery disposition, my sexy swagger, only to end up destitute and still succumbing to cancer in the end? Am I fighting for my life really or just delaying the inevitable? Is the only way out of this death?

A funeral would cost my family significantly less money than my remaining treatments. I’m not trying to be funny and I’m not suggesting suicide. Not at all. Passing health care reform HAS to become a reality. To do otherwise is to effectively doom the 2 million women living with breast cancer right now – and the 250,000 who will be diagnosed every year following -- to a life of poverty, bankruptcy, fear and ultimately a horrible end to an otherwise beautiful life.

Can we afford to lose 2 million women – mothers, daughters, sisters, cousins, aunts, grandmothers, wives, friends, neighbors, colleagues, teachers, lawyers, police officers, factory workers, secretaries, postal carriers, doctors – because they were born women and maybe had a genetic disposition for a disease we can’t cure?

Being a woman is a risk factor for breast cancer.


Think about that for a second.

The fact that you were born (you had nothing to do with that), and you were born female (you had nothing to do with that) …puts you at risk for getting breast cancer. And if, by some freakish roll of the dice, you are one of the 1 in 8 women who gets breast cancer – your whole life becomes enslaved to a system of treatments that you need to survive but may not be able to afford.

Where is the fairness in that? Why do I have a bullet on my back because I’m a woman with breast cancer? Why … just why? Where is the exit for this ride? I want to get off. I did not sign up for this.

All I wanted to do was to live a quiet life, find a good man and get married…have a few kids and maybe write a few books. Laugh a little, drink a little, travel a bit – that’s what being a grown-up meant to me. Now, I don’t know that any of that is possible – well, the books will still be written – but the rest seems to be a distant dream that I may not be able to make come true.

Breast cancer ruins relationships. It ruins your emotional state. It ruins your body. It changes your abilities. Life is just a smidge more difficult when you’re constantly worrying that your life threatening illness might come back and finish what it started. And now, on top of all that…breast cancer has the nerve, the absolute audacity to ruin your financial goals too.


Gimme a d*mn break!

Jumping on my political high-horse: Contact your congressional representative and tell them that we need health care reform not now, but RIGHT NOW.

Think of those 2 million women who simply were born…and ended up struggling with a disease we can’t cure yet.


Right now.  We need a cure and we need health care reform.
http://blogs.abcnews.com/politicalpunch/2009/10/michelle-obama-pushes-health-care-reform.html#

Chemo School

On Monday when I saw the oncologist she figured I should go to chemo school because I had never gone and with a new chemo treatment starting next week, it might be helpful. So yesterday along with getting my PICC redressed, I went to class.

What did I learn?

• That I should be aware of people who have shingles. The nurse said shingles could be infectious when the person is experiencing blisters. If the blisters are crusted over, I should be OK.
• That I shouldn’t gulp down a drink of water or juice because it will stimulate diarrhea. That occasionally happens after I guzzle down my daily protein shake. Who knew that?
• That when using alcohol-based hand sanitizing gels, have enough of it in my hands so that they are completely wet for 15 seconds. The RN said, do not use antibacterial wipes because they remove the good bacteria from your hands. Her preference is the baby wipes.
• That I should stay two meters away from someone who has flu symptoms... to minimize my risk.

Otherwise it was just a good review of a lot I already knew.

On a side note, we also discussed flu shots at which point I realized I was on an extra week off from my chemo. I talked to the research nurse and she said I was good to go for the seasonal flu shot. So last night I zipped over to the health clinic and got it ... plus they ok`d me for a bonus pneumococcal vaccine for pneumonia.

I still have to deal with H1N1 flu shot when it becomes available.

Support Group

Yesterday I meet with our breast cancer support group. It was especially nice to see the ladies this time because I felt I needed to be with people who really understood what I am going through. And meeting them meant I had to share my bad news. Sharing bad news is difficult because I know that my fear will instil fear in them. I know that the first thing I think of when I hear anyone’s bad cancer news is ... wow that could be me. But this time it is me. All the ladies were very understanding and supportive. They just have ‘the look’ and know what to say to make it easier.

And when it comes to support, I would like to thank everyone who reads this blog and has left comments. I know I am not alone. So many others have walked a similar path and truly understand what it feels like. The comments are so inspiring and give me support. They also make me feel so hopeful. I don’t know where I’d be without you.

So thank you very much ... I look forward everyday to reading everyone’s comments to my blog.

Worried again about breast reconstruction

I think that I’d gotten into a false sense of security about my health. I mean, I know that I am still in treatment for breast cancer (some of my friends cannot deal with me saying that I have breast cancer still…). I understand that I’m not at full health. But I think that I sort of forgot a little bit…or became removed a bit from what this whole health crisis was about.

A couple of things have happened that have reminded me that I am still a bit frail. Definitely not as frail as I have at various moments during this past year, but certainly frail enough that I still need to treat myself with care and pay attention. The first problem is that I have an infected big toe. Sounds gross to say but it is true.

I was told that while I was in treatment, I should not have a pedicure. I understood why that was – to prevent any unnecessary infections – but I also felt that I was beyond the time where it would be a problem. I had a pedicure – from a salon that I’ve gone to for many years – before I went to Houston for Labor Day. After I returned from that trip, my toe began to bother me. I freaked out at first but then, calmed down and figured I was being dramatic. Well, a month and a half later…I finally dragged myself over to my primary care doctor’s office and found out that I should have adhered to my oncologist’s advice – no pedicures. Period. My toe hurts – still – and I have to see a podiatrist in order to have the infected part cut off. Just gross.

And easily avoided if I had not been so vain and had taken my situation more seriously. I just had to have cute toes before I went on my mini-vacation. (sigh) Now, my toes look worse than ever and probably will for some time.

Some of the admonishments that you are given as a cancer patient really just seem like overkill… like getting a pedicure. I mean, really? I’ve been getting my toes painted and whatnot for 20 years and have NEVER, ever had a problem. Get a little cancer and bam! More doctors, more problems…

It’s very frustrating.

My second issue is more serious. I am back to an emotional place of fear about my breasts. I don’t know if that fear will ever fully go away, now that breast cancer has entered my life. But in this situation, the fear is about losing my breast – again, which also brings up concerns about losing my life – again. I’m scheduled for reconstruction in a few weeks. I’m still debating cancelling that surgery. Though I don’t really know why.

I received a voicemail the other day from the plastic surgeon who will perform the procedure and her message left me weak and scared. What scared me was that she wanted me to get the genetic testing before my surgery date so that I could know whether or not I carried the breast cancer gene. Since I have a family history, there is a possibility that I carry the gene. If I have the gene, it is her recommendation that while I am in the operating room having one breast created, that I allow the other breast to be removed and instead have two breasts created.

Sigh.

I cannot have the procedure I’m having for reconstruction twice. It is a one-shot deal. So if it happens that cancer returns in my remaining breast, and I have to go through all of this all over again… I can’t use my own tissue to reconstruct a second breast. I would have to have implants. Assuming, of course, that I even make it that far.

When I heard her message, I simply broke down into tears. The fear of losing my second breast is HUGE. I have just gotten to a place where I can sort of deal with having just one breast and now – with one message – I’ve been pushed back 10 months in emotional growth to the scary place where I have to accept giving up a portion of my body.

I thought I was over this. I thought I had dealt with this. I thought this was behind me. And yet, here I sit, tears in my eyes and fear in my heart. I discussed it last night with my parents (well, my mother… my father sat there looking like a deer caught in headlights) and my mom could not understand why I am stuck on keeping my breast. Her logic and mine differ greatly.

The way I see it, the likelihood of cancer recurring in my breast is slim. And there is no assurance that if I lose my natural breast that cancer will not come back to me in some way. To me, cutting off a perfectly fine boobie is ridiculous. And wasteful.

My mother’s logic is…why take the risk? Even a small chance of recurrence is a chance. Breasts aren’t that important in the grand scheme of your life and if it saves you from going through all of this all over again, it is worth the loss.

Truthfully, I had not thought about going through chemotherapy and radiation again. I really had not considered all that cancer recurrence could really mean in my life. I just instinctively felt protective over my body. MY body… MY boobie. MINE. (yes, I realize I sound like a petulant child, but that is how I feel)

Like I’ve said in the past…having cancer is hard because it’s so invasive in your life. Strangers just start telling you all sorts of things about yourself that you didn’t know. And that you can’t feel. You have to trust and take them at their word that what they say they know is true. (Scary)

Cancer strips you of a lot of things; your looks, your strength…your dignity. It takes away your ability to care for yourself as an adult and sometimes it takes away your dreams for the future. Now…in fairness, these things do come back to you…but the taking-away part is really difficult to get over some days.

It’s MY boobie. My very fabulous boobie. And while it’s not as pretty, not as perky, maybe even not as sexy as it was in my younger days… it is all mine. But maybe, it wasn’t meant to be mine forever… I mean, its partner tried to kill me.

I have to make a decision. And I need to make it…like right now…because time is running out. And no decision is still a decision…it’s just not the best decision.

Class Last Night

Class went well last night. I’m excited to say I got an A- on last week’s assignment. That is better than what I expected ... that is for sure. My next assignment, due in December, is a group project. It’s a training needs analysis for an organization. The truth is that I’d rather not be doing this right now but on the other hand it might just be the distraction I need.

Speaking of distractions ... I think I’m going to get busy with a few other things too. There are some Arts & Medicine support groups through the Cancer Institute. Yesterday a couple of the ladies were talking about a knitting group starting up this month and a watercolor painting group starting in November. I might just sign up for both.

A Few Deep Breaths

Well I must admit, yesterday I had to take a moment here and there and remember to just ‘breath’. That is what we’re taught to do when dealing with cancer and the roller coaster ride it takes you on. Just stop and take a few deep breaths. As much as you try and prepare for the worst news with these CT scans ... negative news stills hits you like a ton of bricks.

I woke up at 4:00 am trying to wrap my head around how I’m going to cope with the latest news. After about an hour or so, I fell asleep and woke up feeling a bit more in control. I figure I’m going to cope with this like I do most everything else ... I’m going to jump in both feet and do what I have to. I’ll decide on a course of treatment and deal with it.

I was so happy this morning that I had my support group meeting. There were other folks there with advanced cancer who offered me the hope and support I need right now.

Blood Work/CT Scan Results

Today I had my blood work and visit with the oncologist. Blood work looks good but the CT scan results ... not so good. My lungs and bones are stable but my liver is not. The liver is showing new lesions with growth of the existing tumours. One of the smaller tumours grew almost a centimetre ... which is substantial. So the oncologist recommends we change chemotherapy as Taxotere and the possible study drug I was on are no longer effective.

Our next step is to choose between Xeloda and another study drug. I have been given a bunch of reading material from which I will be making my decision. Then we will start the new chemo next week. The reason we start the new treatment next week and not this week is to allow more time for my body to get rid of any toxins associated with the old chemo.

Good news is ... I’m done with the steroids. I don’t need to take them with the new chemo. Yippee!

Love My Sleep

My sleeps continue to go well. I find Winter makes for better sleeps because of the darkness and the cooler nights. If you haven’t noticed, I’m all about a good night’s sleep. I’ve always needed oodles of sleep ... eight or nine hours a night. Ever since I was a child, my life seemed to revolve around a good night's sleep. I would rather go to bed early than stay up and watch TV or do whatever.

Because of that it seemed like I was constantly being razed by my friends for being tired and wanting to go home to bed ... from parties and such. People would often try and convince me that I didn’t need all that sleep. Well I did.

I often wondered whether that was a sign that my body was weaker than most other peoples and perhaps pointing to why I have cancer today.

Sleep

The beginning of this week, I was struggling with sleep. Waking up in the middle of the night and then up for hours. I really wondered what was causing this ... maybe too much coffee during the day, my allergies or the fact that maybe I was a bit agitated and wound up from the day.

Well a couple of days ago, the sleep issue switched for the better ... I had an afternoon nap then a great sleep during the night and another nap the following afternoon and again a great sleep last night. I’m glad to say that my sleep seems to be under control once again. And the good news is that I didn’t use any meds to make it happen. Trying to make sense of what is causing some of these issues can be mind boggling sometimes.

I just know that I want to be well rested for chemo next week.

Benadryl - My Buddy

The side effects from my chemo are flu like symptoms … so things like water eyes, stuffy nose and sinuses, hoarse throat, sneezing and coughing, sinus headache are all regular occurrences. Some weeks are worse than others.

I also struggle with environmental allergies which seem to have intensified since I started chemo. We’ve had quite a bit of wet snow here … so I figured no more dust and pollen in the air and no more allergies. Not! maybe changes in temperature and humidity also trigger allergies.

For about a week now, I’ve been struggling with really itchy watery eyes … so yesterday I finally pulled out the Benadryl. To be honest, I got relief pretty quick, way better than Visine.

I don’t really like to take medications … even over-the-counter stuff but I’m slowly changing my ways. Benadryl is my buddy.

Lymphedema Glove

Yesterday I picked up my new custom lymphedema glove. You’ll notice it flares at my wrist. It was specially designed that way so that I wouldn’t have a double compression at the wrist ... from the sleeve and the glove. The glove is made from a very thin nylon/spandex fabric which makes it really comfortable.

So how do I feel about wearing the sleeve and glove? I’d have to say it’s not too bad so far. Once it’s on, I sort of forget about it. I do notice it is warm in the summer tho.

So is it working? I notice that the swelling in my arm goes up and down during the cycle so as long as I’m on chemo, I can’t really say it is getting better but I do think it is under control.

A Few Busy Days

It was a great long weekend with turkey dinner at my sisters. Spending time with family was so very nice. The nieces and nephews are always a colourful bunch. And the food was outstanding ... both sisters are amazing cooks. I don`t cook at home anymore so I thoroughly enjoy a home cooked meal.

My brother-in-law P asked how my appetite was and I said it was down. Food wasn’t as pleasurable as it once was. I told him I wanted seconds of food but my belly said no. Then my sister who is a nurse said ... “You now probably ‘eat to live’ whereas you used to ‘live to eat’" ... that is so true. I’ve always thoroughly enjoyed food and the eating experience. Now, I eat because my belly growls and needs food.

Tuesday, I was at the clinic and attended a support group. There were about seven of us there and the majority were living with metastases. The first session is always emotional as everyone shares their stories.

After that, I zipped over to another clinic location for a PICC line dressing change. The usual nurse was there. She said, "You look stylin` today." I said, I`m feeling better these days ... enough so that I started caring about what I wear. I said for the first eight or ten months of chemo, I was so affected by side effects that I could care less about how I looked. I would only wear a couple of different outfits because firstly I had put on so much weight from the steroids and that was all that would fit and secondly, I didn`t have much energy for lots of laundry, so washing and wearing the same clothes was easier. The reason I’m feeling better these days is that we cut my dosage of chemo in the spring. It has taken a few months for me to start feeling better.

Later on, I worked on my paper that was due for class last night. It was a full day.

Metastatic Breast Cancer Awareness Day

October is Breast Cancer awareness month and October 13th is Metastatic Breast Cancer Awareness Day.

My journey with breast cancer started in 2000 when I was first diagnosed. After treatment I went into remission that year. In 2008 I was diagnosed with metastatic breast cancer.

For information on Breast Cancer, please visit the Canadian Breast Cancer Foundation.

For information on Metastatic Breast Cancer Awareness Day, please visit the Metastatic Breast Cancer Network.

Here is a very short video explaining what metastases are …

Happy Thanksgiving Canada!

i got through chemo day okay...

Well, I made it through another round of chemo last week. To be honest, it was a pretty good day. I was in a good mood. I took random pictures of the cancer center and the chemo process so that I could remember it all. I laughed, I snoozed a little...I just tried to absorb all of it.

I mentioned awhile back that going to the cancer center has become a bit of a refuge for me. It is a cocoon of love and support -- and as hard as the world is these days, I need those hours of respite just to remember that this part of my journey is about healing. This stuff isn't easy. Looking at yourself everyday with the knowledge that you have cancer -- or had cancer -- is hard. Looking at your chest and being forced to accept that you will never, ever, EVER be the same woman is really tough. That the definition of your womanliness has changed and not because you chose the change. But you made the decision to do the best you could with the hand you were dealt.

Everyday, I look at myself and make the choice to suck it up and keep it moving. Like everyone else, my world is filled with a variety of stressors and I have to constantly remind myself why all of this matters. It matters because I matter. And I matter because there is someone, somewhere in this world who will benefit from my struggle with breast cancer. It matters because breast cancer continues to be a killer...and it shouldn't be that.

I am scheduled for surgery next month. I've been looking forward to this next step since I was told that I couldn't have my mastectomy and my reconstruction at the same time. I guess that's been over 9 or 10 months now. I don't know that I can adequately express the feeling to you, of waking up in the hospital and knowing that underneath the bandages...there was nothing there. I've been living with one breast since early January and I'm still not fully comfortable with my body now. When I lay down at night, its still a time of wrestling around while I find a comfortable position to lay in. Still. After all this time.

So, help me understand why I am contemplating cancelling my surgery? I want my new breast. I really do. I want this fat removed from my tummy -- I really REALLY do (laughs). But I am afraid. Very afraid.

I am willingly subjecting myself to a very major surgery...and for what? A breast? Haven't I gotten to a place where I realize that I am more than my breast, or my hair, or anything else that cancer has forced me to give up, re-think in some way. Is it vanity? Or is it a step forward for my emotional health? Can I live without my breast and find a way to be happy with myself? I really don't know. Today, I am tired of wearing the prosthesis. And if I do decide to cancel this surgery...I will have to make some real changes. I'm going to either get really brave and stop faking the funk with the prosthesis and walk boldly with one breast. Or I will have to dig deep in my pockets and pay for a custom prosthesis that will fit my body appropriately and help to balance my body so that I don't continue to curve in a little on my left side.

Mostly, I am afraid of taking another 6 to 8 weeks off from work. Returning this summer after being gone for many months was difficult. It was hard physically, and it was hard mentally. I didn't remember so many things. And so many other things were so drastically different. Even now, a few months later, I find myself struggling to just get through the day some days. 

It is no small thing that I am considering not having this surgery -- not putting myself into a position of wholeness -- in order to keep from upsetting other people. I am actually surprised that I am sharing this here. I've been wrestling with this notion since I returned to work. And with all of the focus on breast cancer this month, the decision has become anything but easier.

A few months ago I briefly chatted with a pink ribbon sister who was on the verge of having her reconstruction surgery. She was really excited that finally she would have her breast back. She sticks out in my memory because she shared with me that it had been 8 years between the end of her treatment and her reconstruction surgery. Eight years!  The thought brings a tear to my eye. She said that she waited that long because the radiation effects on her body took that long to finally dissipate. I don't know the lady so I have to take her at her word but the conversation really freaked me out.

It is one thing if you decide at a later date to have the surgery -- for whatever reason. Some women initially think that they don't want anymore surgery and just decide to live with their body just as it is. Other women, look at their lives and decide that they simply cannot afford anymore time recuperating. Some women are like me...wishing they could do it all at one time so that life can go on with minimal disruption. But its another thing entirely, to delay or deny yourself the surgery because you don't want to disturb other people around you -- work colleagues, family, friends, etc.

The truth is that my breast cancer is difficult for everyone. And now I'm at a point where I am wondering whether I should sacrifice one for the team and just wait, maybe a year or two before I put myself in that vulnerable situation again. The question I have to ask myself is...can I handle living with one breast for an extended period of time? Right now, I really don't know. It seems like an impossible choice. Everyone around me is tired of my breast cancer. Probably even more than I am tired of my breast cancer. For them, I want to give them a chance to focus on something else for a change.

I am grateful that reconstruction is an option for me. I am grateful that I have insurance to cover the procedure. I am excited at the notion of possibly feeling whole again. But hours and hours of micro-surgery is scary. Five days in the hospital -- two or three days in ICU -- is scary. Weeks of bed rest while my body heals and recuperates.... again, all scary.

I am in a teary place today. Its been a long and boring weekend and it wasn't supposed to be. The plans that I had changed with no warning. That put me in a bad place emotionally because I had other plans for this weekend and I changed them to accomodate someone else. But I'm teary because there's just too much to consider and I'm afraid of making the wrong decision. Having fun and giggles this weekend was really supposed to help me decide whether to go forward or to hit pause.

Trying to hit pause on my life seems crazy because life doesn't work that way. I still carry the thought that I have a 30% chance of seeing this cancer return to my body. And if it does return, it very well may kill me. That is the honest assessment of where I stand. As a black woman with breast cancer, my likelihood of dying from this disease is higher than women of other races. I know that. Do I live my life with the expectation that tomorrow isn't promised and I should seize all the joy I can right now? Or do I live my life with the expectation that God may have blessed me with a really long life and I can relax just a little and take my time on certain goals?

As I prepare to go to Las Vegas in a few days... I keep focused on the fact that without breast cancer, this blog would not be here. If not for breast cancer, I would not be contemplating not one, not two but three books based upon the words that I have shared here. If not for breast cancer, I would not be looking at life as a possibility to do everything I wanted.

I've had the knack of putting myself on the back burner for years. The goals and dreams that I may have had as a kid, I have managed to delay and deny myself -- for lots of good reasons I've told myself -- for decades. And then breast cancer came along and shook me up a little bit and told me that I don't have the luxury of thinking that I would always have time to do whatever I wanted to do.  And even though I know that time is no longer mine to waste, I still wonder whether or not I'm being selfish for wanting my reconstructed breast now rather than later.

Survivor Stories

Shopping For A New Cell Phone

Thursday, D and I went to a local mall to look at new cell phones and plans. My cell phone is 3 years old and starting to show its age. I`m trying to decide if I want a `candy bar` style phone as opposed to the `clam style` which I`ve always had in the past. The new phones have so many new gadgets to play with. I figure it will give me something to do while I`m waiting on doctor’s appointments. I watched people in the mall to see what type of cell phones they had. I think the majority of phones out there are candy style ... likely because they are easier for texting.

We ended up spending a couple of hours walking around ... well not really walking ... I would sit down just about every opportunity I could. Still, it was a couple of hours in the mall where I was more active than say if I was at home. Thank goodness there were a ton of cell phone provider stores and electronic stores to keep D occupied while I hobbled along.

During one of my rest stops, there was a gentleman sitting there and I could see from the corner of my eye he kept looking at me. I kind of wondered what I had out of place that kept him staring at me. Well he finally came over to talk to D and I. He had cancer and was in remission. He wanted to come by and share his cancer experience and wish me well. That was really nice.

We ended up stopping and having supper at the food court. I had some Chinese that went down pretty good. D had Italian.

Shout Out To Stand By Her: A Breast Cancer Guide For Men

I've been asked to do a shout out to Stand by Her: A Breast Cancer Guide for Men.

John W. Anderson had four women in his life go through breast cancer – his wife, his mom, his sister, and his mom’s best friend. . He realized that all his experiences, combined with other men’s journeys through “Cancer Land” could be of help to other men facing their own journeys.

So he wrote STAND BY HER: A Breast Cancer Guide for Men.

For more information please visit the website at: www.standbyher.org.

BC Support Group Coffee Meeting

Yesterday afternoon we had our Breast Cancer support group coffee meeting. There was five of the six of us there ... S was vacationing in BC. J’s lymphedema was acting up and she had her arm wrapped in five tensors bandages, no sleeve. It looked heavy and bulky and uncomfortable. A, just came back from a mini vacation in Jasper and brought us all a bear-pin souvenir. That was very thoughtful. C, mentioned she was just over the H1N1 flu. In fact she had seen her doctor the day before and verified that it was OK to meet with me. We were talking about Google and Irm asked if I’ve ever been to Google ... we all laughed ... we are a diverse group.

I ordered a small OJ and sandwich. After eating half of the sandwich, I decided to put the remainder away because I was afraid of provoking diarrhea.

When we first arrived we all hugged each other as usual but after talking about the approaching flu season, we decided we’ll do the ‘elbow bump‘ when we meet in a couple of weeks.

Beelined For The Door

Last night’s class was a bit exciting. About half an hour into it ... I felt major gurglings coming from my stomach. I needed to go find a washroom fast but I didn’t want to disturb the class by getting up and leaving. I hate doing that, but its diarrhea. I waited just long enough for our guest speaker to wind up her presentation and I made a beeline for the washroom. I get to the washroom and a cleaning lady comes out and says her cleaning partner will only be a couple more minutes cleaning the washroom.

I knew it was too risky to try and find another washroom so I tried to calm myself and stood at the door. It was only a few minutes before the other cleaning person came out ... and just in a nick of time. I had visions of calling D asking him to bring clean pants to the ladies washroom on the main floor of the college.

My stomach settled down to a dull roar for the remainder of the class. However, as I was waiting for D to pick me up ... I had to race back into the washroom.  Can I tell you ... when diarrhea strikes ... it strikes fast and furious.

Yesterday I was reminded of how vulnerable outings can be.

...and tomorrow is chemo day...

I'm coming to the end of my chemo days. I am not sure how many more I have but tomorrow is one more adventure in the land of breast cancer. I am not quite as nervous or anxious as I usually am. I think that's because I've been so busy at work, and then busy when I get home that I'm sort of exhausted. Too tired to worry.

Awhile back, someone commented that breast cancer was the best thing that happened to her life. I found that thought to be...well...ridiculous. But as I contemplate the days ahead, I am starting to understand a little bit better how this journey can make you see life in a brand new way. I won't go as far as to say that having breast cancer has been the best thing ever. (laughs) But I will admit that the challenge of this illness has forced me to become strong and confident in ways that I was not sure I was capable of a year ago.

I think of my early days with this disease quite a bit now. I find myself talking to other women who have recently been diagnosed with breast cancer a lot. Since I have started this blog, I have become a magnet for other sisters struggling with finding their way through this maddening maze of breast cancer. Each time I talk to one of my new pink ribbon sisters, I relive my early days of treatment and try to explain to them how I felt, what I went through and what they can expect from their treatment in the coming days. I purposely take myself back down that emotional rabbit hole, so that I connect with them in a way that resonates with the fear and anxiety that they feel. Each time, each sister... I virtually take their hand and walk beside them for a few steps so that I can feel what they feel in order to get them to see what I see now. That where they are today is not where they are meant to stay.

I am certainly no medical expert on breast cancer. I am one victim who is struggling to be triumphant in the end, like so many others before me. I am only an expert in how I felt, what I did and how I managed to keep moving forward even when I wasn't even sure I was making progress at all.

Battling breast cancer has given me ample opportunities to examine myself, my life and to really stop and consider where I am going and what I have to contribute to this world. When you find yourself faced with your own mortality, you shift your priorities pretty quickly. (laughs) I am guessing that I only have 1 maybe 2 more rounds of herceptin chemotherapy and then I'll be back into the real world again. I am guessing that I will feel some sort of separation anxiety from leaving my safe cocoon of regular visits to the cancer center. But even though I imagine the next few weeks/months to be interesting emotionally... I know that it is truly time for me to move on and claim my new presence in this world.

As I really think about dating again, and I think about the possibilities of this life... I realize that even if my time is shorter than I had ever hoped or imagined, that's no excuse not to enjoy every moment and wring all of the possibilities out of it that I can manage with the time that I have.

I want to love again. I really do. The idea of being vulnerable, though, is scary. But, I ask myself what is the alternative and I realize that the possibility of connecting with someone good, kind and decent really doesn't have a downside.  I read another pink ribbon sister's blog the other day and her post was a mini-rant about the possibilities of dating as a breast cancer patient. Her words echoed a sentiment that I have felt myself -- who wants to date the cancer-girl? She went on to discuss her concerns about having one breast and dealing with all of these treatments and appointments and wondered -- much like I have over the past year -- what guy would willingly sign up for this side of life?

The truth is...a good guy would. The right guy will. She and I just have to have faith and believe that it is possible. Because it really is possible. Honestly, I am afraid of being in love because it makes me vulnerable to being hurt again. But the alternative is to live a life without love, without intimacy, without companionship. Eek! Don't want that. So, I'll open my heart and take a chance and hopefully the good things that I experience will outweigh any possible negatives. The truth is that without breast cancer, I would still feel the same hesitation about dating and love possibilities.

I want to be focused on something other than my health. I want to keep travelling, laughing and enjoying the joys of this world. There are so many things that I still want to do. Maybe that's why tonight my anxiety about chemotherapy is lower than usual. Instead of worrying about what may happen when I get to the cancer center in a few hours...I'm thinking about the weekend. Thinking forward to my trip to Las Vegas in a couple of weeks... Thinking about the giggles and joy I will feel on Friday when the work week is over.

After all that goodness... being anxious about having a 2 inch needle stuck in my chest for a couple of hours is low on the priority list. Its not like I haven't handled it before. (laughs)

A Week Since Chemo

Thanks to Ativan, I had another great sleep. I didn’t even wake up feeling groggy as I have in the past. Anyways, I won’t be taking anymore this cycle. I try to keep the usage to about two or three pills per three week cycle. I don’t want to get used to them and render them ineffective.

One of the other side effects of chemo that I’ve always experienced is these little white pimples on my nose and “T” area of my face. I usually get about 10 or more of them and boy are they ever itchy. Sometimes they are so itchy; I’ve woken up in the middle of the night. When I squeeze them ... they bleed like crazy. This time, I only had three and they didn’t really bleed too badly at all. Speaking of bleeding, I have had only had one nose bleed, tho when I blow my nose ... there is always some blood in the mucus. That should taper off in a few days.

This cycle has been one of the easiest to date. I’m not quite sure why but the side effects from the chemo can vary so much. I just wish I could figure out what I did right in this cycle to ensure that all future ones are like this one.

In a short while, I’m off to the clinic for my PICC dressing change and later this evening to my class at the college. Next week I have a 10-12 page paper due ... I’m more than half done so far.

Slept Really Well

I had a great sleep last night. Took an Ativan about 9:00pm and fell asleep about an hour later. I woke up at about 5:30 in the morning for a short time and then slept till 8:30am. The sleep was great but the best part was ... no nightmares. Looks like all the chemo drugs are out of me. Whewwwww!

Its noon and I still haven’t had breakfast. Just don’t have an interest in eating. I’m not really nauseous ... I’m just not interested. Today I’m going to go looking for something that might look tasty to me. Between the poor taste buds and the heighten sense of smell, things aren’t the same.

For example, yesterday, my mom and sister D brought over chicken and ribs from Tony Romas. Boyoboy,  I bet that is going to be tasty when I finally have some ... not ... it was disappointing to say the least ... nothing to do with the food and all to do with me.

Anyways, coffee doesn’t taste too bad and that keeps me going. I know it’s not the best thing to drink but it’s my little pleasure in life ... and I’m not giving it up either.

Cancer Sucks! Find A Cure ... Get On It Now!

Getting Through The Worst Of It

Today is generally the worst day of the cycle and I’m not feeling too too bad. I’m not as agitated, frustrated and moody as I usually am. I am however quite sensitive to light and sound. It feels like D is talking much loader than necessary and the TV well ... it’s definitely too loud. It’s like the senses are all amplified. Quiet and dark seems to be the most soothing for me right now.

I always struggle with stuffiness, tho I don’t have the intense nasal headaches this time. I’ve had only one nose bleed so far.

The sleeps are a different story ... intense dreams Thursday night and nightmares last night. I woke up this morning feeling like I’ve been hit by a freight truck. I expect at least one more rough sleep tonight and then things should start improving. Fingers crossed!

I had a banana, coffee and yogurt for breakfast. That combination gave me intense stomach pains ... indigestion. I took a Metoclopramide which works like a charm, relief came pretty quick.

My goal as usual during this time is to get through the weekend.

Phantom itching

I’ve read about people who have lost limbs feeling phantom pains and itching in the removed limb. I always thought it was so sad. I mean, here you have this poor person who has already gone through something very traumatic and after all of that… suddenly their mind starts playing tricks on them and tells them that they feel something that they couldn’t possibly be feeling. Yes, I’ve always thought that this was a very sad thing – not overwhelmingly worrisome but maybe mildly annoying at best.

So, of course when I started feeling my own phantom pains and itches, I chalked it up to my mind playing tricks on me. My anxiety is slightly elevated right now because I’m not sleeping well. Plus the seasons are changing which has heightened my fear of the flu drastically. Basically, I ignored the itching I felt. Thinking that if I didn’t give it any energy, it would dissipate and my life would simply go on. But it is not working.

My left boobie itches something TERRIBLE. Wouldn’t be a problem if there was a boobie there but there ain’t nothing there!! So why is it itching like this? I feel crazy. Especially when I am busy working on something else and my mind is focused and then I find myself reaching to scratch a non-existent breast.

Sigh.

Utter madness. But on day 2 of Breast Cancer Awareness Month…its appropriate that I feel just a little mad, a little crazy, a bit off-kilter. This month is all about arming yourself and the people around you with the information necessary to keep pressing for a cure for breast cancer. So hopefully, a few years from now, I won’t be sitting by the bedside of one of my younger cousins after she’s lost her breast to cancer too.

For all my pink-ribbon sisters/sistas and supporters…sport your pink proudly. We’ve been given a gift. The gift of an affliction that reminds us just how precious and beautiful and wonderful this world and this life really is.



P.S. It isn’t lost on me that 1 year ago I hated everything pink. My first October as a breast cancer patient was rough. This second October is starting off much better from an emotional perspective. I’ve crossed the top of a very large mountain and the valley below looks so welcoming and wonderful. I am happy that chemotherapy doesn’t last always. Very thrilled that healing does take place. Super ecstatic that very soon I will once again have two breasts. And really amazed that God does listen to our cries, our whispers and our prayers because how else could I explain the wonderful support system that I have been blessed with?

Between you and me, I may start dating again seriously. I’m scared and excited at the same time. But I am still considering the options and trying to make sure that I am up for the challenge of being that intimate with someone again.



Time really does change things.

Shout Out For LIVESTRONG Day

Today is LIVESTRONG Day, a global day of action to raise awareness about the fight against cancer.

Health Care- A Global Perspective

This topic we haven't discussed on this blog yet, partly because I feel it is so polarized in America. But I keep hearing stories from various news outlets regarding the 'state' of the US healthcare, so I felt it was time for me to do my own research and take a comparable look at other industrial nations to see if we even need health care reform.

Our Ranking:

In 2000 the World Health Organization ranked the world's health systems. It ranked France as

number 1. At that time the US ranked 37, behind Costa Rica, & Dominican Republic and ahead of Solvenia and Cuba.

Preventable or Amenable Mortality:

Researchers from London in 2008 studied the amenable mortality, or deaths that could have prevented with good health care. Of the 19 Industrial nations they researched, France came in first, the United States came in second.

Cost:

The Commonwealth Fund did a study in 2008 and tracked chronically ill patients from Australia, Canada, France, Germany, Netherlands, New Zealand, United Kingdom, and the United States. In this study, the US has the highest percentage (54%) of chronically ill patients who did not seek the recommended care because of the high costs of medical bills. The lowest percentage went to the Netherlands (7%).

USA Today even did an article showing how countries provide and pay for the cost of health care with in their country. Interesting to note in this article, France offers health care coverage to all of it's residents including their illegal residents.

I am a fan of science, and all the research that has been done on the US health care system seems to prove that the US lacks in the health care services it offers to its residents. I guess I am missing a concept here and why this is such a big argument in the US. Why do we not want to improve the health care systems we offer to our residents? Can someone explain to me why this isn't an important matter?

Related Posts: Stay Healthy for the Holidays

Picture Courtesy of: http://blog.damballa.com/

Early Chemo Side Effects

Last night’s sleep was not too bad ... I woke up at 1:30am feeling really hot from the steroids. My cheeks were burning up. I got up and read blogs for about an hour where I cooled off really well. I jumped back into bed and fell asleep pretty quickly.

My chemo symptoms aren’t too bad yet. My vision is a bit blurred with watery eyes. My breathing is a bit laboured and I’m a bit weaker.

This cycle is the first cycle where I have not and plan not to take any Zofran, the anti-nausea drug. I have continually cut back on the pills because I do not seem to experience serious nausea but I do experience serious constipation. Today I had a regular bowel movement which is a small victory. My last cycle, I took one pill of the six prescribed pills. This cycle I plan on taking none, I may be so done with those things.

Oh yes, coffee still tastes pretty good too.

A Somewhat Passive Way to Get Smart and Be Inspired

Movies!

Head to Cambridge this weekend (it starts today) to check out the UN's Global Voices Film Festival. You can choose a film or two from the schedule or hit up the opening party tonight. I went a few years ago in NYC and left inspired to make changes and to help out my community. And what better way to learn than in front of an extra large boob tube??

While you're at it, send over some reviews and comments... I'll be out of town and have to miss out.