No Blog ‘Till May ~6

Gone to Philadelphia to attend the metastatic breast cancer conference ... so no new blogs here until I get back.

No more port!

That's my port in that cup. It was removed from my chest on Wednesday. Hard to believe that it has been a part of me for nearly two years.

For those who don't know... a port (also known as a mediport) is a small device that is implanted in your chest under the skin with a catheter that feeds directly into one of your main veins. It is used by cancer patients as a way to more comfortably recieve chemotherapy drugs and to have blood drawn from. Although it seems more difficult, it is actually much more pleasant than being constantly "stuck" with a needle directly into your arm.

Chemotherapy drugs are really harsh. And they can do a number on your veins. It is not too uncommon for the drugs to burn some patients at the point of administration (and along the arm) but having a port saves you from that possibility.

In the summer of 2008 (I think it was August) when I received my port, I thought my oncologist was "special" for insisting that I have it. I had no idea how badly chemo could damage your veins or your muscles. But, after sitting in the cancer center watching other patients who did not have ports deal with burning in their arms, collapsing veins, etc. I greatly appreciated his foresight and his insistence.

The interesting thing about a port is getting accustomed to being "stuck" in your chest with a big needle everytime you receive chemotherapy or have bloodwork drawn. When I went to the hospital the other day for my follow-up visit, I had some blood drawn through my port. OUCH! I was out of practice with taking that needle and gained a new appreciation for all the times that I did so with no tears and no wincing.

I was a soldier for all of those months of chemotherapy. A real soldier.


It was previously scheduled to be removed in November but I (pretty much) ignored the surgery date because I was stressing out about my reconstruction surgery which was around the same time.

I really didn't think too much about having it removed this time because chemo seems so long ago. I honestly don't think I really had much choice anyway. A friend made a comment to me the night before the procedure that really made me pause.

She was happy that I was getting my port taken out. And at that moment I realized that I wasn't happy at all about it. I wasn't overly emotional -- one way or the other -- but I realized that having the port removed meant the end of something. And I wasn't sure how I felt about that.

Removing my port means that my oncology team believes that chemo is not in my future. It means that they are confident that I'm cured and can resume a normal life. Because keeping a port requires regular maintenance -- it has to be flushed at least once a month -- when it is deemed that you are in the clear, you are advised to have your port removed.

My port had become a safety net (one of many) for me.  I didn't realize it until it was time for it to go. I know that I am overly fascinated with the notion of returning to "normal" -- probably not unlike most cancer patients. I suppose it is a normal and healthy reaction to going through something so very harrowing. But... as I've shared before, I have a serious fear about recurrence. A part of me has become secure in being "the cancer girl". Having cancer, dealing with it and all its craziness, became normal for me. So the parts of that journey that empowered me, like my port, gave me a strength and a confidence that I really had come to rely upon. Slowly, they are being stripped from me.

I suppose that is a good thing actually. But, I'm realizing just how weak I am without all of these crutches I've been leaning on for the past two years. I hope that my friends and family will bear with me while I get my strength to stand on my own back.

PS. My mother went with me to the hospital -- because I was going to be fully sedated, I could not leave the hospital on my own. She thought I was CRAZY to ask the surgeon to give me my port after the procedure. But besides the fact that I paid for it (laughs)... I needed to see and hold the device that played a part in saving my life. I did not want it to end up in the garbage can because it was such an important piece of the journey for me. Its gross I suppose to keep a talisman like that. But, I needed to see it. To be reminded of all that I've been through.

A part of me is really terrified of forgetting all of this. I have a strong tendency to block out unpleasant things or things that become less important in my life. I mean, completely block out and forget about it. I don't want to minimize any part of this cancer journey though. I don't want to forget too much of it. I don't want to look around and think it was just a blip that I experienced. I want to always be able to connect to the emotions of this time, and keeping the port is a way to remember. (But yes, I know that its a little odd)

CT Scan and Bone Scan Results

It wasn’t long before the door knock came and in walked my Onc. He asked me how I was feeling … do I have pain of any kind, how is the Xeloda treating me? I’m thinking to myself … enough of the small talk, give me the news.

This is sort of how it went … 

There are new growths on the liver …. blah blah blah … Xeloda no longer working …. blah blah blah … options are limited …. blah blah blah … chemo …. blah blah blah …. study drug …. blah blah blah.

I’m in shock as he left the room and in comes the research nurse. I ask her to repeat some of what the Onc said …. Seriously, I only heard a few words here and there.

So in short … my options are Vinorelbine by IV or a study drug TK1258 by pill. I’m hoping I qualify for the study drug because it’s a pill and will give me better quality of life.

Well … I’m going to Philadelphia and will deal with all this later.

New Lymphedema Glove

Somewhere in March I ordered a custom lymphedema glove that came in and was ill fitting. It was too loose on the top … not enough compression.

Firstly, the reason I need a custom glove is that most gloves are tight at the wrist. I need a glove that flares out a bit at the wrist so that I don’t have the double compression from the overlap of the sleeve and the glove. 

Secondly, my hand tends to retain a lot of fluid. Most gloves I’ve tried cause the fluid to pool on the top of my hand. I need a glove with extra compression on the top. Well as promised, the manufacturer sewed in a filler patch on the top of this new glove. 

So far, I really like how it feels. I’ll let you know if it does the trick.

Now Here’s a Switch

Last week D burnt the tops of two fingers and he goes for daily dressing changes at a local hospital. Guess what, I now drive him and he calls me to pick him up. Usually it’s me getting some work done and then having to call him on my cell to have him pick me up.

I don’t know … it’s just different. D says he feels the same way.

As for the dog… she is just happy to go for another car ride.

Put Your Petro-Points Towards the Fight Against Cancer

As taken off their website ...

It's never been easier to join the fight against cancer. The Petro-Points™ Program and the Canadian Cancer Society have teamed up so you can donate your points. 

How do your Petro-Points make a difference?

By donating your Petro-Points to the Canadian Cancer Society, you are helping the organization offer these information and support programs:

• Cancer Information Service - a national, bilingual, toll-free service that offers vital information about all aspects of cancer to patients, their families, health care professionals and to the general public.

• CancerConnection - a one-to-one, telephone-based peer support service that matches Canadians diagnosed with cancer, or their caregivers, with trained volunteers who have experienced cancer themselves, either as a patient or as a caregiver. 

Kentucky Derby Day Event THIS Saturday

I wanted to let you all know that OYFP will be hosting a Kentucky Derby Day Event THIS Saturday at GLOBE. Not only is it completely fun to dress up and wear amazingly big hats, but you can win prizes as well. In typical OYFP fashion, ALL of your money will be benefiting Friday Night Supper Program. Who doesn't want to have fun and support and support Boston's homeless population as well.

Price of ticket includes:

• A Mint Julep drink
• Tea Sandwiches
• Chance to win several different prizes

We even have a photographer coming to take pictures of you and your Derby Day Flair! So come on out and support a good cause with OYFP!

Philadelphia in Five Days

So this Friday I leave for Philadelphia for the 4th Annual Conference for Women Living with Advanced Breast Cancer. I’m especially excited because I’m stepping out of my comfort zone by taking this trip and travelling on my own. Cancer has stripped away some of my confidence and this trip is a bit about getting some of it back.

Also … I am so looking forward to meeting some fellow mets gals. I think just being in the same room with other ladies that are in similar situation as mine will be so amazing. I’m almost tearing up thinking about it.

As far as packing goes, I’m pretty well set. When I first registered for the conference, I was planning to bring my laptop and blog while I was there however; I’ve more recently decided to keep it simple and leave the computer at home. I really want to focus on making it as carefree a trip as possible. So no blogging while I’m away. 

And … it looks like the weather in Philly should be pretty nice for the weekend. Fingers crossed ... I think I’m set.

Hope for Metastatic Breast Cancer

Shout Out to the Breast Friends Dragon Boat Racing Team

As taken off their website …

Breast Friends Society sponsors the Breast Friends Dragon Boat Racing Team of Edmonton. We are women from Edmonton and surrounding communities. We have all had a diagnosis of breast cancer and we train to race in dragon boat competitions.

Breast Friends are from every walk of life, and have varied fitness levels. Each member is a powerful example that women can lead full and vigorous lives after surgery and treatment for breast cancer.

Building My Stamina Up

Next week I’m off to a metastatic breast cancer conference ... so I thought I’d try and build up some stamina by walking a bit more and/or just being on my feet a bit more. So the last couple of days I’ve been quite active … spending time at the mall and such.

What I found is that my stamina is pretty good but the bottoms of my feet are sensitive. It doesn’t take long for them to feel like they are burning up. I had thoughts of sticking them into a bucket of ice water to get some relief.

Way back when, my Onc suggested I get some gel insoles for my shoes, so today I picked some up. I’ll let you know how they work out.

I should mention, today is the last day of my Xeloda pills so I’m thinking the side effects should start tapering off. In the mean time, I’m going to give my feet a bit of a break.

Seeing the beauty in the struggle

Last night, I had the privilege of watching a video on facebook. The video was of a sister named Marjory who was recently diagnosed with breast cancer and had just had (what looked like) a bilateral mastectomy. She decided to videotape parts of her journey for her friends and family to bear witness to her struggle.

Marjory is a dancer. She is a friend of a friend of mine. Our shared friend reached out to tell me about Marjory when she learned that she was diagnosed with breast cancer. She asked me to reach out to her and I did. Marjory is well-loved by her friends and family. They hosted a fundraiser event for her and videotaped parts of it. I felt blessed to bear witness to the beautiful outpouring of love and honor and respect for this sister I have never met. And I watched her dance. She moves with a graceful frenetic energy. The joy of movement shines on her face and shoots from her limbs. You can just tell… she was born to move that way. She loves it as much as it loves her.

So I watched her video to her friends and family last night. And I was drawn in to her presence. She was pale and looked tired. She had 4 drains hanging from her body. Two on each side. She wore that same wretched surgical bra that I have had to wear twice now (and soon again for a third time). She looked like a ghost of the woman I had just watched in previous videos dancing and sharing her gift of movement with the world.

But she was there. Even in her weakened state, she was there.

She was there.

She showed how flat-chested she was (her words, not mine). She has expanders in her chest but they haven’t been filled with solution yet. She showed the plastic tubing that was coming from her sides, allowing the fluid that builds up in her body to be released. And as I watched her for those 6 minutes or so… my mind drifted back to January 2009.

While the entire world was focused on Washington, DC because of the inauguration of the first black president… I was looking like Marjory. Pale, weakened, tired. Drains coming out of my sides. Chest flattened where someone had removed a part of my flesh… in order to save my life. I will never forget that time in my life. I only wish I had thought to capture it on film.

I look nothing like Marjory. And she looks nothing like me. But my GOD… my breath was taken away when I looked at that beautiful sister… watching and listening to her hold on to her life with both hands.

I remember so well, the pain and the agony and the fear. But looking at that sister, I could see nothing but the beauty in the moment of her struggle. I only hope that I have radiated that much beauty throughout my struggle.

It is difficult dealing with breast cancer. From diagnosis, through treatment and then beyond… this is hard. And yet, it is the absolute rawness, the pure and almost holy (sacred?) reverence it gives you for life itself that reminds you just how beautiful life is – even in the struggle.

PS. If you want to donate to Marjory's medical costs, follow this link to see more pictures, more videos and to donate as well. http://www.fredem-fighters.blogspot.com/

Chiropractor Appointment

This morning I saw my chiropractor. I had previously decided this would be the last appointment for my lymphedema arm for now. Between his deep massage therapy and my daily exercise and stretches, the swelling had gone down quite a bit. Not only has my mobility improved but the sore ach has pretty well disappeared.

Knowing this would be the last time I’d see him for a while, I had a couple questions to ask him. Firstly, I wanted to ask him about what stretches or exercises I could do as I was still having some difficulty putting on jackets. My arm just didn’t want to bend that far back. He said no problem, he pointed out which muscles were weak and showed me the stretches and exercise I needed to be doing to strengthen those muscles. Excellent, I said! Secondly, I asked him if he had any advice for me as I was going on a flight next week. He said, for the flight … make sure to wear my sleeve and glove and wear support socks for my feet. 

He did some deep massaging and stretches on my arm … and away I went.

CT Scan and Bone Scan

Yesterday I went in for my CT scan and bone scan. First the CT scan and getting an IV. Finding a good vein in my left arm is getting to be a bit tricky so the nurse wrapped it with a hot towel, a hot pack and then some fabric to keep all that heat in. A few minutes later she took off the entire wrap. She got a vein first try … good job! She then poured me my one liter ‘contrast’ drink and sent me to the waiting room so I could slurp it up. A short time later I had my CT scan.

After my CT scan, I went to nuclear medicine for my bone scan. When I got there I was asked if I’d like to take part in a study where the hospital would inject Na18F as a tracer instead of 99mTc-MDP. I was not great at chemistry in high school so I’ll just give you the long and short of it … there is a global shortage of the one contrast agent and they are testing this other one in its place. I agreed to the study and filled out the consent form.

When the nurse came by with the injection needle, he walked in caring a small metal box. When he opened the box there was a syringe enclosed in a metal cylinder one inch in diameter. I asked … what’s with the fancy syringe. He said, “Oh that is tungsten metal and is used to shield the staff from the radiation within the syringe. Ugg … I just then felt like a lab rat.

On a side note, Na18F which is the new study tracer is actually made at the Cross Cancer Institute here in Edmonton.

Scanxiety

I’ve been feeling quite anxious lately. It’s in anticipation of my CT scan and my bone scan which is this afternoon. I’ll get the results back in about 10 days when I see my Onc.

Sometimes I wish I lived in lala land and didn't have to do them.

Reason number 6541835... why I hate breast cancer

Oh my... what a weekend. I am on the move, travelling and whatnot. I have to go to the mid-west for a business meeting for work. But since no flights from my area fly directly to that city, I decided to stop in Atlanta for the weekend (the flight was going to come through Atlanta anyway). I wasn't looking forward to my flight to Atlanta because it was in the wee early morning hour on Saturday (not a great move for me). But I did what I had to do.

Beyond the fact that I was tired when I left my home to go the airport, and tired while I sat at the airport too long... and nearly missed my flight because the airline changed gates and somehow I missed that announcement... outside of all of that... I had hoped that getting on the plane would be relatively easy.

Um. No.

My left arm is wacky. There's no other way to put it. It is, what it is. Since the mastectomy included removing cancerous lymph nodes as well as my breast tissue, my poor arm just isn't the same. I was warned about that. (shaking my head) But I swear I just am sick of breast cancer dogging my life in these little ways.

My arm has been acting up a little bit, over the past few days/weeks. Which is cool. I am learning to deal with the minor issues. But I was a bit worried that flying between home, Atlanta and the mid-west, would aggravate my arm and make life a bit hellish. I had hoped that my worrying was in vain. But... of course it wasn't.

One of the reasons that I am angry (well maybe annoyed is a better word) about being on this side of the breast cancer journey is that people look at you and cannot SEE that you've been through hell. People look at you and just see, a regular ol' person. I suppose that is a good thing but sometimes it is a pain in the butt.

Case in point:  I always check my suitcase. I do not like the hassle of dragging around carry-on luggage. I check my luggage and I keep on going. But on this trip, even though I checked my luggage, I still had to lug around my laptop case. Because I ended up being one of the last to board the flight -- instead of one of the first -- I was frustrated squeezing down the aisle of the plane. (Side note: do the airlines just HATE their passengers or what? Grr... sick of feeling squeezed on planes.)

As I am coming close to my assigned seat, the flight attendant was standing sort of in my way blocking the aisle. Granted, it is very early in the morning and Nicole is not a morning person but I felt that she was a just a tad bit... abrasive for early in the day. Nonetheless, I responded to her bark about where my seat was located with a tight jaw and a smile. After my response seemed to make sense to her, I found myself standing far too close to her as she stood up to get out of my seating area and allow me to sit down.

Now, picture this. I am 5'9" tall and a bit thick (not fat, just not skinny). She is about the same height, also african-american and pretty solid herself. Not fat, just not skinny either. We are standing uber-close -- practically nose to nose because the aisle is just that tight. I am feeling agitated because I was boarding so late and its crowded. I am annoyed because most of the overhead storage space is taken -- the flight was packed -- and the flight attendants kept repeating the same mantra (basically, put your bag where ever you see an opening). So, I'm standing there with this http://greenhillgoldman.blogspot.comian chick blocking my seat and I look up to notice that there is actually space just above my seat for my laptop bag.

My left arm is tight. The lymphedema has been acting up and I'm already feeling the heaviness. Remember too that I can barely lift my left arm over my head... my range of motion has been shot to hell since the first surgery (aggravated by the reconstruction last fall). In other words, I am dreading the attempt to lift this heavy bag up and over my head to put it in the overhead bin.

When people cannot look at you and immediately see what "your" problem is, they naturally assume that you don't have one. I was standing close enough to this woman to kiss her (if I got down that way) and I said to her... "Would you please help me with my bag?" She asked me to repeat myself, as though she didn't hear me... so I said again... "would you help me with this?".

Do you know that this woman said "sure" and then proceeded to squeeze herself past me -- moving farther up the aisle from me -- and did NOT offer nor attempt to help me lift my bag into the storage bin.

Sigh. It took a lot of self-talk for me to articulate that simple sentence out loud. Asking for help is not something I do easily or well. But I knew that I would need help and I felt it was okay to ask for it. To be ignored, then to feel the eyes of lots of passengers on me as I struggled to lift my wheeled lap-top bag up from the floor to the top of the seat, and then to struggle to lift it from the top of the chair into the storage bin was really humilating.

I know I don't "look" like there's anything wrong with me. I know that people do not have to go out of their way to help me. But I find it particularly repulsive when I ask directly for help and am ignored and stranded. Who does that? Hears a request for help and then just walks on by?

After I get my bag into the storage container and sit down, its all I can do not to become upset and teary. I didn't ask for preferential treatment, just a little assistance. And that was too much to ask, I suppose. Just very annoying. I got through the flight, I pulled my own bag down from the storage bin just as awkwardly as I put it up there. But no pride of accomplishment was there.

Two days later, my arm is still swollen -- it started acting up while I was hanging out today -- and I have to been on a plane in a few hours. (which will only increase my discomfort because flying aggravates the lympedema) I am dreading getting on that flight, and dreading dealing with that laptop computer. I am worried that when I get off the plane, my arm will really be swollen and crazy looking. Its not looking too great for this arm.

I've been so pressed to get back to "normal" that I forgot what its like the normal world for peple are not at the top of their game. I am generally well-adjusted and cool with my current fate -- however, a little more compassion from people in the world would really help make my life just a tad bit smoother.

Where is the love? Do I have to revert back to my chemo-look? Bald head and sallow skin tone? In order to expect that people will take a few moments to look at and to address whatever problem or assistance I may have/need. I guess that its the way of the world today.

An Inspiring Cancer Video

Birds of a Feather …

This morning D and I decided to go for a ride to William Hawrelak Park, one of the parks not too far from our home. I especially enjoy this particular park as it has a man-made lake. We parked the car and went for a stroll.

There were all sorts of birds … ducks, geese, loons, seagulls and blackbirds just to name a few. Even tho there was still a fair bit of ice on the lake, the birds didn’t seem to mind as they all seemed to be having a great old time.

What a pleasure it was to watch. I most enjoyed watching the male geese … making sure all the other male geese kept a fair distance from their mates.

I think I’m going back for another visit tomorrow …

Chemo brain is not a game and its definitely NOT fun

When I started chemotherapy, the nurses used to joke with some of the patients about "chemo brain". Of course, I didn't understand at first and then once it was explained to me, I thought it was a bunch of hooey. (laughs) I really did.

Since being treated for cancer is such a head trip... I figure that anything that you can put a label on to explain why you're trippy, unfocused and generally not sharp isn't a bad thing. It can only help, right? As I've done with every new word, condition, test, and drug that I've been introduced to on this journey... I took to the internet to find more information about chemo brain and what could be done about it.

There's a bit of information out there, but none of it seems definitive and that worries me.

In retrospect, I don't think I really took the notion of chemo brain too seriously. I have a million things on my mind -- just like everybody else. I have a million things I need to do, to plan for, and to prepare for -- just like everybody else. The fact that I have difficult focusing, that I require (and give myself) far too much time to mentally unwind doing bs -- well, I've been chalking that up to a real slacker mentality. (laughs)

But today at work -- as I was berated by a colleague for not finishing a task and not understanding it well enough -- I realized that I might be falling into deep waters, and uncharted territory for Nicole.

I am tired. I say this all the time and I don't necessarily mean a physical fatigue (though that is a part of my problem many times)... I mean a serious mental tiredness that I just can't seem to shake. I feel like no matter how hard I try to keep up, to remember things, to stay on task... I fall short. I forget important details. I get derailed and side-tracked.

Sigh. It is annoying and frustrating. It doesn't help that when I'm at work, I wish I was anywhere but there. Usually, my dreams include a sunny beach and warm ocean water. But really, anywhere other than where I am most of the day is where my mind goes.

Do I have chemo brain? I don't know. I could very well just be a lazy slacker who can't get her head into the game anymore. Or maybe my dissatisfaction with my job is translating into a subconscious refusal to be of good use. (that seems really crazy though) I sort of feel the same fogginess I felt when I struggled with clinical depression some years ago. I don't feel the despair that went with it though.

In reading about other cancer patients who have struggled with chemo brain, I am left feeling a bit distraught. There doesn't seem to be any effective cures out there. And a lot of people who have struggled with this "fogginess" have ended up leaving their jobs. I simply cannot afford to do that. (Unless I hit the powerball this weekend for millions of dollars) I did notice on one website something slightly encouraging -- a few patients have said that they felt better after a few months on anti-depressants. I am not excited about the prospect of taking anti-depressants again (they do a real JOB on your sex drive and I'm digging my sexy swagger these days). But I really do have to do something.

Sigh. Another thing to think about, worry about and wish I could turn back time to escape. Guess its time to call the therapist and work through some stuff. (I'm going to check out the book in the link below -- the cover is up top--maybe they found some answers to this crazy issue)

Your Brain after Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus

The Knitting Group

The group was quite small today but we still had a nice time. I find knitting to be such good fit because you can knit and chat at the same time. Also, there are so many different patterns and yarns these days; it’s so easy to be inspired and try them out.

Only one problem with this knitting tho… it’s a Xeloda side effect. I have dry and peeling skin at the finger tips. The tips of my fingers are all shiny and thin where they touch the most. And working with yarn only exacerbates the problem. As I’m knitting, I can almost see the layers of skin peel off.

Latex finger cots are something I’ve been thinking of trying for quite a while now. So today I stopped at the drug store and picked up a pack. I unrolled them on my thumb and pointer finger on my right hand as they seem to be the most used and abused. After wearing them about half an hour I notice they were a bit tight where they unroll, so I just snipped off the excess. Now they just reach down from the finger tip to the second joint.

Nothing like a little experimenting … I’ll let you know how they turn out.

Sigh. I'm stressed and my body is reacting to it.

I’ve been quietly ignoring my body’s signals that something is wrong. I am not in any pain, other than slight embarrassment and extreme annoyance, but my body is definitely reacting to the way that I am reacting to my environment. In case you were wondering, I feel just fine. I do have, however, a small problem that could escalate into a larger issue if I don’t take preventative steps to handle it.

 

I am talking about lymphedema. Lymphedema is an occurrence where you experience swelling in an extremity (arms, legs) because the body is incapable of moving the fluid through properly and it collects/pools in those areas. I was told that this could happen after my mastectomy because I was having lymph nodes removed. I sincerely hoped that it wouldn’t happen. My plastic surgeon warned me that my reconstruction surgery would aggravate the condition but I chose to go ahead with it and take the chance that it wouldn’t happen. Or if it did happen, it wouldn’t be horrible.

 

Well… two things. It’s happening. And it’s really annoying. (Hence the blue annoyed face)

 

If you’re wondering how you cure it – well, you don’t. What you can do is work to prevent it from occurring too often, and try to keep yourself in a position where it doesn’t get outrageously bad.

 

It is no secret that I’m a little vain. I think I’m a hottie and I’d like to keep that image of myself intact. But… uh, when one arm is larger than the other, it is not a good look. Ya know? I haven’t been making a big deal of it to myself because the swelling is rather mild and I can still function as well as I have been since these surgeries. But, I am going to be hopping on and off planes quite a bit over the next few weeks and flying aggravates the condition.

 

Sigh.

 

I am really annoyed with myself. But, my annoyance did result in one thing: I finally made the call I needed to make to meet with a physical therapist who can help me with it – and hopefully she will be able to help me work on regaining my full range of motion with that arm as well.

 

I’ve been reading some interesting and conflicting recommendations for women who have gone through mastectomies and reconstruction. When I came out of the hospital after my mastectomy, I was advised not to carry anything heavy with that arm. (I guess they did not get the memo that Nic likes nice bags – big ones too) Not to have any injections or have my blood pressure taken with that arm. To be diligent about trying not to get insect bites on that arm as well. As any and all of these things could cause my arm to swell. I’ve been doing that. However, recently I’ve read a few articles that suggest that weight lifting and or other exercises could be beneficial to women like myself.

 

Hmph. I wish someone had told me this a year ago. I’ve been wandering around like a crazy woman over-protecting this arm and whatnot and I could have been working out and getting myself together. (sigh)

 

Ok. I lie. I probably wouldn’t have done that – but at least I would have known that I should. (laughs)

 

At any rate, after I return from my mini-vacation in May, I head straight to the physical therapist to get this arm straight. It seems that no matter how I try to avoid it, exercise (real exercise too, not that fake kind I’ve been trying to get away with) has to become a part of my life going forward. Ugh.

 

 

 

Somewhere my friend Lisa is smiling…

 

Pfft… personal trainers, I tell ya.

 

Dinner and a Movie

Last night I went out for dinner and movie with four long time friends. There wasn’t any shortage of conversation and it was really a fun time. Even tho I truly would be lost without my cancer buddies ... it sure is nice to be with and talk to regular folk... where office politics and shopping were the major topics of conversation.

After dinner, we were off to see the movie, The Bounty Hunter with Jennifer Aniston. I hadn’t been to a movie in a very long time. As I sat there watching all the ads come up just before the show... I almost came to tears. I felt normal. Here I was... with five friends ... to watch a movie.

It’s really hard to describe ... just feeling so alive ... not a care in the world.

Hot Flash

This morning I received my copy of Abreast & The Rest, it’s a woman’s breast gynaecologic cancer newsletter. One of the articles in the newsletter under Hot Flashes .... haha ... was an article entitled Hope Air Celebrates.

Hope Air is the national charity that helps Canadians get to medical treatment when they cannot afford the flight costs … and treatment is outside their home communities.

For more information, visit their website at ... http://hopeair.org/index.html.

Fertility concerns with breast cancer

In September 2008 I started chemotherapy treatment for breast cancer. Although my head was swimming from all the information thrown my way, I did remember to discuss my fertility concerns with my oncology team. After stressing that I wanted to have the option of having children after my treatment was done... and after weighing the desire to have kids against the need to begin my cancer treatment right away, I opted to have my ovaries shut down.

As it was explained to me, because I was pre-menopausal, I was a candidate for hormone-suppression of my ovaries. This option was quick and relatively easy to administer. Relatively easy is truly a matter of degrees. That needle I took in my abdomen was extremely long. EXTREMELY LONG. And it wasn't pleasant. But it was tolerable for a good cause.

The hormone suppression had the added benefit of reducing the amount of estrogen in my body which was be a benefit to me since my cancer was estrogen-driven. What I wasn't told -- and I'm not sure that my oncologist knew the answer -- was when or if my ovaries would resurrect and return to full function. Its been a year and a half since that first needle and well... no signs of my cycle yet. I imagine every creak and ache in my body (some days) to be a sign that my "lady curse" is coming back. But nothing so far.

The first surgeon that I met with on this journey was a young asian doctor who was also a breast cancer survivor. Having her on my team helped me immeasurably because I was comforted by the fact that she really knew what my path looked like. She wasn't simply telling me things she learned in a classroom, she was speaking to me from her experience. It made a huge difference. She was open and honest with me every step of the way and I will forever be grateful for her honesty. In hindsight, she set the tone for the way that I write this blog and the way that I speak to others about my journey. Her ability to be open, honest and blunt really was a blessing to me. Her willingness to be available to me at any time by phone was a major blessing as well.

(I remember calling her the weekend after I received confirmation that I did indeed have breast cancer. I called several times and kept reaching her voice mail. She finally called back after a day. And I felt bad because she was on vacation, out of town at her sister's wedding. But I was amazed that she did return my call.)

I remember asking her about fertility concerns in the summer of 2008 (which was just before I started chemotherapy) and she explained to me then that she too had opted to have her ovaries put to sleep. However, when I pried further for an understanding of when I could expect this situation to reverse itself, all she could tell me was that her ovaries had not yet awakened. I believe she was at that time, about 2 years out from her treatment like I am right now. At the time, I hoped that it wouldn't take me as long.

Earlier this evening, I felt a few twinges in my lower back and a familiar nauseating feeling washed over me for a few moments. I actually smiled at the thought that I might be experiencing menstrual cramps. Its been so long that I have forgotten about the misery that comes along with a menstrual cycle. I think my desire for a baby has actually warped my brain into thinking cramps are a good thing.

When you're faced with all of the choices and options you need to consider when mapping out your plan of attack against breast cancer, its easy to become stressed and overwhelmed at the possiblity of making a bad choice. And, if you're a young pre-menopausal woman, fertility may be an issue that you have to deal with sooner or more directly than you wanted. The truth is that you can't make a bad choice. Any choice you make, based upon what you feel most strongly about, what you know in that moment -- is the right choice.

There are lots of ways to try to preserve your fertility -- you can freeze eggs, freeze embryos, shut down your ovaries, opt to use less harsh chemotherapy drugs -- but ultimately, no matter what you choose to do, you are balancing saving your life with bringing a new life into the world. And that is a very difficult choice.

For me, at the time of my diagnosis and the beginning of my treatment I simply did not feel that I had the time or the money to seriously consider cryopreservation options. What's ironic is that prior to my diagnosis of breast cancer, I had researched (a little) cryopreservation options in my area and had pretty much discarded the idea because of the cost. By the time I started thinking about fertility options (before my diagnosis) in a real tangible way, I was in my mid-to-late 30's. A little late to try to preserve eggs or embryos. Considering also, that I lacked a partner to create a child with -- there would have been an added cost of sperm donation to add to the costs of cryopreservation. And if I'm really honest, it just didn't seem like the ideal way to have a family.

I hate to say it this way... but my dream of a husband and then kids just won't let me go. I know that women opt to have children alone all of the time. For many reasons. I know. I know that its possible. I know that I have a good support system with my parents, my relatives and my friends. I know that I would not be alone and that my child(ren) would be loved by many people. But... I have such a hard time convincing myself that I want it by myself. Because I really don't.

Sigh.

So, even though I'm researching fertility options, its really a half-hearted effort.

I don't have the ability to invest thousands and thousands of dollars into the attempt to have a child alone. Now that the urgent treatment is behind me... I'm still faced with the same questions, the same concerns and the same hesitations. After I shared my post yesterday about my baby dreams, one of my best girlfriends posted a scripture reference to help me focus on the fact that none of this is really up to me. And while I know it is true, I still wonder what I am supposed to do at this point. Besides sit and wonder and think. Or make non-heartfelt attempts to do it alone.

I really don't know what to do.

Shout Out to the Living Beyond Breast Cancer Conference

As per their website ...

Join Living Beyond Breast Cancer on May 1-2 in West Conshohocken, Pennsylvania, for our 4th Annual Conference for Women Living with Advanced Breast Cancer. Held just miles from the city at the beautiful Philadelphia Marriott West Hotel, this national conference focuses on your unique concerns as a woman living with metastatic breast cancer.

At this event, you will:

• Learn about medical treatments for bone, liver, lung and brain mets

• Hear about clinical trials and cutting-edge therapies

• Ask questions of providers with a special interest in metastatic breast cancer

• Get advice on managing side effects

• Find support for your emotional and practical concerns

• Be inspired by speakers who have coped with metastatic cancers

• Connect with hundreds of women like you 

Did I happen to mention ... I’m going .... so very excited!

Lymphedema Continued...

This morning I went back to the medical supply store I wrote about last Saturday... the one where I had ordered a custom lymphedema glove and it ended up being ill fitting.

After I left on Friday, the clerk called the manufacturer once again to explain that fluid was pooling on the top of my hand. She said they were going to order a new glove and sew a filler patch in on the top. That will flatten things out and help stop the fluid build up. I was thrilled with the news.

I decided to try one of the ready-made gloves. It fit me so well I decided to buy it too. Besides, it doesn’t look like this lymphedema is going to go away too soon and a second glove will come in handy. 

After all that, I shopped and picked out a mastectomy bra. I mentioned to the clerk that I wear my bra’s day and nite. She said she had a soft bra for just for sleeping. I said that I’d ‘sleep on it’ ...haha ... I`ll pick it up when my glove is ready.

So now I have a new bra, sleeve and glove.... woo-hoo!

Dreaming of days and lifetimes without breast cancer

My trip to the oncologist last week left me in an emotional tail-spin. It has taken me days to try to get it together.

I am fine. My oncologist seemed pleased that I handled all of the treatments, all of the surgeries seemingly with ease. In hindsight, while there were some bumps along the way -- a little neutropena, delays in healing, and so forth -- things went pretty much as planned. Hard to believe that a year ago, I was finishing up my radiation therapy. With wet blisters, peeling skin and darkened skin from the radiation... I was a puffy, emotional, exhausted mess.

Now, a year later... I am planning another trip to celebrate my birthday and I am travelling around the metropolitan area -- and soon possibly the country -- talking about my experience with breast cancer and encouraging women and men to stop thinking of breasts as an afterthought.

During my oncology visit, my discussion with the current resident fellow... made me stop and really think about fertility. He didn't say anything to me about fertility, he merely asked me about my menstrual cycle. When I said to him that I had not seen my cycle since I started chemotherapy, he wrote down the word "amenorrhea". So of course, I had to ask what that meant -- I mean, I've been through a lot over the past 2 years and slipping unknown words onto my paperwork just isn't going to fly. Not these days.

He told me that amenorrhea simply meant that I did not have a menstrual cycle. From that little bit of conversation, I realized that this menopause thing just might be real, and it might be long-lasting. This could really be IT. The truth is that I am now 40 years old. My fertility has "supposedly" been on the decline since I crossed the 30 threshold. So, even though I found breast cancer at a relatively young age, from a baby-making standpoint, I was late to the game.

If you ever want to see God laugh, tell Him your plans.

In 2008, my plans were to focus on my fertility and to research my options as a single woman who wanted to have children. Now, because of advanced cancer which caused me to need a lot of heavy-duty treatment, I am feeling certain that my fertility is just a by-gone dream. I have been thinking a lot these past few days about being amenorrheic and whether I have the strength to start on the fertility journey.

There are so many things to consider, how will I afford those treatments if they are not covered by insurance, will I use a donor, or will I find someone willing to father and raise a child with me... and so on.

The honest truth is that I don't know. I know that one of the reasons that I keep encouraging women to check their breasts, and to get their mammograms is because IF breast cancer is something that you have to deal with, the sooner it is detected the better the treatment will be. If breast cancer is caught early enough, you may not have to lose your breast, like I did. If breast cancer is caught early enough, you may not have to endure chemotherapy, like I did. Basically, if you find breast cancer when it is small (even microscopic) you can come through the treatment and pick up your life a bit more easily that someone who is diagnosed at a later stage.

You don't have to lose everything about yourself with breast cancer. But in order to do that, you have to know early and you have to act early.

But... even if you're diagnosed at a later stage, like I was... you can bounce back as well. I am planning to find a fertility specialist that I can talk to about my options. Truthfully, I finally realized/accepted that it is very possible that I won't have a baby. And the thought, for once, didn't cause me to cry. I am sad, but I am not defeated by the thought.

I've been dreaming about my life before breast cancer. And dreaming of a world without breast cancer. But, every morning when I wake up, those dreams fade.... and I start my day thinking about how to move beyond this chapter in my life.

Looking for More Options

This morning I was looking at my lymphedema arm. The Spiderman Kinesio tape was barely hanging on to my skin and it had slowly unravelled bit by bit for the last 10 days. I started trimming with scissors at my wrist and then my shoulder ... so today off it came. At this point I’m convinced that it’s helpful and I’ll definitely have another put on. 

But my cycles keep changing the amount of swelling ....one day up and then down. So I was thinking... maybe acupuncture could help level off the symptoms a little. One hitch tho is that I should avoid those small needles in this arm.

Does anyone know or have heard of any stories of lymphedema arm being treated with acupuncture? 

tia ...

New Glove and Compression Sleeve

When I went to pick my new custom fitted glove for my lymphedema arm up, I was a very disappointed that it was not a good fit. It was loose on the top of the hand and since this was where most of the fluid collects, I needed to get a better fit. 

While I was there, they phoned the manufacturer and agreed to sew another glove for free. 

Because my existing glove is wore out, I’m going to wear one glove over the other and see how that works out.

The Friday Knitting Group

Today the facilitator asked us if cancer has changed us and whether others have noticed a change in us. Well we all had similar stories of how cancer has changed us ... we especially spoke about how we had become stronger individuals. One thing we all agreed on is that we were able to say ‘no’ more easily ... whether it was at home to family or at work. I guess you could say we all learned how to set a few more limits and boundaries.

A few gals said that people have noticed a change in them as well. I can’t say anyone has mentioned that I’ve changed ... tho I’m sure I have.

Throughout each session we admire each others knitting projects. I showed off my Moebius scarf that I knitted last weekend. There are a few different ways to do the Moebius. Here is a link on YouTube if you’re interested. And here is a picture of mine.

Just before the end of the class ... we were invited to check out some of the other yarns available. I scooped some nylon ribbon yarn. Who knows what I will create.

I tell ya ... these two hours go by so quick ...

Blood Work and Oncologist Visit

This morning I had my blood work and my Onc visit. I was scheduled for the blood draw at 10:00 but when I got to the lab ... oh boy was it lined up. I finally got in for my needle stick at 10:55 and then with my Onc visit at 11:00. 

Of course the Onc didn’t have the lab results back but he called me in and did a quick exam. The same questions always come up ... any issues with diarrhea, mouth sores or cracks in my hand or feet ... and once again I was happy to report ‘no issues’. He said he’d give me the same prescription for my Xeloda when the lab work came back and everything looked good. About 45 minutes later, I got my prescription and off to the pharmacy I went. Another 45 minute wait and I was off and running.

No time to blog....`cuz I was meeting my Second Cup coffee group at 1:00 pm. I was a couple minutes late but no troubles because C had secured our soft comfy chairs. A short while later T joined us and we all had a nice chat.

So all in all a hurry up and wait kinda day ...

More Kinesio Tape

I just got back from my Chiro appointment. He looked at my arm and said the swelling had gone down considerably from last week. I thought it had gone down too but when you look at something every day ... it’s hard to notice the subtle changes. 

At a previous appointment he mentioned we could apply some Kinesio tape to my shoulder. So today I brought in my stash to apply to my right lymphedema shoulder. Below is a picture of what he did.

He again told me how Kinesio tape works. The tape reminds the body where it should be and encourages it to return to the normal position. For example, having it on my shoulder helps my less used muscles to return to their proper position ... so when I slouch ... the tape provides a gentle tug which then reminds me to pull my shoulder back. The tape works for my wrist and hand so it should work for my shoulder. I`ll let you know how this turns out.

Cool eh!

Back at the cancer center for a few hours

Today was my follow-up visit with my oncologist. The appointment that had to be rescheduled because the other appointment was cancelled and I wasn’t aware of it.

 

A few things happened that surprised me. One, I weigh a bit more than I thought I did. So, I need to get my workout and diet game in order – and quickly. Two, life really does move on. Noticing how different some of the nurses looked from the last time that I saw them – one had longer hair, another was 8 months pregnant – sort of startled me. Three, I was in a happy place emotionally when I was in the reception area but as soon as I went back to the area where the chemo is administered, I became very overwhelmed and sad. Very, very teary. I didn’t expect to have that reaction.

 

I received my last herceptin drip in November of 2009. I finished my ACT chemotherapy in December 2008. But I still have my medi-port implanted in my chest. I had to go back to the infusion area so that the oncology nurses could access my port for the blood that had to be drawn for the necessary tests. Another thought that passed my mind – I was a serious CHAMP when I was taking those needles to my chest back in the day because OOOOH LAWD that hurt. I guess you don’t realize what strength you have or that you use until you realize that you’re out of practice with it.

 

A lot of time has passed since I stopped going to the cancer center on a regular basis. For awhile, it became a place of comfort for me. I knew everyone there, and they knew me. I had lots of giggles and hugs when I was there. But going back this morning reminded me just how far I’ve come. And just how painful that time really was. Even though I cried a lot during that time, I still hid a lot of my pain from myself and from others. Today, I realized just how painful and scary that time was for me. And how much I am really not trying to ever, ever go back there again.

 

I cannot determine whether breast cancer will creep back into my body. I don’t know whether I will be one of the fortunate ones who manages to live a long life beyond breast cancer or whether my time will be shortened by a recurrence. What I do know is that somebody has to find a cure for cancer. And soon. Too many people are losing too much of their lives because of it.

 

The Living Well Group

Today I had my final Living Well session with the group. The homework from last week was to create letters of gratitude and then read them to the appropriate person. I failed to do my homework so have nothing to offer about this experience. Sorry. 

P presented one of her Doctors with a letter of gratitude ... now isn’t that a thoughtful thing to do. I know I take my Doc’s for granted.

Even tho this was the last meeting for the group, there was still one final assignment.

So here it is:

• Consider which institution or organization promotes or enables an outcome that you value and then find out what you can do to make this institution or organization better.

• Dedicate about three hours each week for the next three to six months doing something to help make this organization better. The idea here is for you to use your strengths for this task.

• Keep a journal of how it feels to work for such an institution and then reflect on how you feel about yourself and the institution.

Wow, this one’s a biggy.

An Early Outing

I got up early today so I thought I’d step out for a Timmies coffee. I then went for a little drive and ended up at a park not too far away. It was so nice and peaceful there. I parked the car and rolled down the windows and just took it all in; the sounds of nature ... the birds, some ducks and geese and the odd squirrel in the trees. It was so serene.

It was interesting to watch the ducks and geese as they sat in the middle of this still frozen man-made lake, anxiously waiting for the ice to melt. I wish I’d brought my camera along.

There were also some geese wondering around on the grassy areas ... munchin' on some old grass. What was really sweet about it is that often they were walking in couples. Obviously they had found there mates and were just waiting for that darn ice to melt.

It was a real treat for me watch nature doing its thing. I definitely left feeling more calm and relaxed.

The Race for the Cure is coming

The Susan G. Komen Global Race for the Cure is coming to Washington, DC on Saturday, June 5^th, 2010. Last June was the first time I ever participated in the event. And it was also just shy of my first year dealing with breast cancer. It was an emotional day – both good and bad. I cried a lot that day. I was scared, I was sad, I was overwhelmed and I was still struggling trying to be “normal”. Whatever that is.

 I look back at the few pictures I have from that day – my face is puffy, partially from crying but also because I had just ended my radiation treatment a couple of months before and my body was still dealing with the after effects. Right now, I can close my eyes and feel the energy from that day. It was electric. The sea of pink and white t-shirts was amazing. But the pink survivor shirts touched my heart in a major way. I sported mine but I remember feeling really self-conscious about wearing it. Not that it mattered to anyone else, but it felt raw to be so exposed. Funny, considering how much of my life and my business I put on this blog.

 One thing I remember thinking is that there were so many of us survivors. All ages, all races… wearing our pink shirts with pride (or fear in my case). There were ladies out there who were in the midst of their treatment. They came out with their bald heads showing the world that they were fighting this disease with everything they had. They came out with scarves and hats. Some were walking with assistance from friends or family members, others were strong enough to run.

 But all of us – pink shirt survivors – were there demanding in our own quiet way to be noticed, to be counted, to let the world know that we matter. Each and every one of us, matters. Each pink shirt represented a life, a family, a support network of people who were forever changed by a few words… “you have breast cancer”.  

I pray that no one else has to hear those words or go through this ordeal. But I know that until we find a cure, that is just wishful thinking. In the meantime, I am raising money for the Race for the Cure. I am hoping that my little contribution to the cause will make a difference in the lives of other women and men who fight this disease.  

Here is the link to my personal page for the Race for the Cure. If you would like to make a donation, please use this link to do so. If you would like to join my team for that day, please click the “join my team” link and sign up. I will need all the dedicated team members I can pull together for that day.

 Thanks. :)  

http://globalrace.info-komen.org/site/TR/GlobalRaceForTheCure/GlobalRace?px=3104650&pg=personal&fr_id=1370&et=aSQ1M0u_yFcUwFlNQVglFw..&s_tafId=42161

The Race for the Cure is coming

The Susan G. Komen Global Race for the Cure is coming to Washington, DC on Saturday, June 5^th, 2010. Last June was the first time I ever participated in the event. And it was also just shy of my first year dealing with breast cancer. It was an emotional day – both good and bad. I cried a lot that day. I was scared, I was sad, I was overwhelmed and I was still struggling trying to be “normal”. Whatever that is.

 

I look back at the few pictures I have from that day – my face is puffy, partially from crying but also because I had just ended my radiation treatment a couple of months before and my body was still dealing with the after effects. Right now, I can close my eyes and feel the energy from that day. It was electric. The sea of pink and white t-shirts was amazing. But the pink survivor shirts touched my heart in a major way. I sported mine but I remember feeling really self-conscious about wearing it. Not that it mattered to anyone else, but it felt raw to be so exposed. Funny, considering how much of my life and my business I put on this blog.

 

One thing I remember thinking is that there were so many of us survivors. All ages, all races… wearing our pink shirts with pride (or fear in my case). There were ladies out there who were in the midst of their treatment. They came out with their bald heads showing the world that they were fighting this disease with everything they had. They came out with scarves and hats. Some were walking with assistance from friends or family members, others were strong enough to run.

 

But all of us – pink shirt survivors – were there demanding in our own quiet way to be noticed, to be counted, to let the world know that we matter. Each and every one of us, matters. Each pink shirt represented a life, a family, a support network of people who were forever changed by a few words… “you have breast cancer”.

 

I pray that no one else has to hear those words or go through this ordeal. But I know that until we find a cure, that is just wishful thinking. In the meantime, I am raising money for the Race for the Cure. I am hoping that my little contribution to the cause will make a difference in the lives of other women and men who fight this disease.

 

Here is the link to my personal page for the Race for the Cure. If you would like to make a donation, please use this link to do so. If you would like to join my team for that day, please click the “join my team” link and sign up. I will need all the dedicated team members I can pull together for that day.

 

Thanks. :)  

Happy Easter!

Chiropractor Appointment

This morning I visited the chiropractor. He asked how my arm was doing and I said I had relief almost immediately after my appointment a few days ago. I’ve been able to do stretches and exercises with more ease. He said that’s great. He asked me to lie down on the table where he proceeded to find the tight muscle in my right front shoulder. He dug his thumb in and stretched out my whole right arm. A pleasant feeling of ouch followed... I could just feel my whole arm relax. After working the muscles a bit more, he said ... I have something new to show you. He left the room and came back with some Kinesio spider tape for my lymphedema. He asked if would like to try it out and I said sure.

Here is a picture of my arm with the spider tape. I’ve also included a two minute video on Kinesio tape. I’ll let you all know how this works out.

Second Cup Coffee Group

Yesterday afternoon I was off to meet with the Second Cup coffee group. I wasn’t sure if anyone would be there with Easter coming up. But when I got there H was already sitting there reading the paper ... how nice. We chatted for a bit and then T came by. That really made me happy.

My goal in getting this coffee group together was to have cancer people connect, where we can speak freely about cancer. I’ve often heard cancer folk say; I feel bad for my family and want to give them a break from talking about cancer woes. To be honest, I find it hard to get cancer people out for coffee; however I think I’m making progress.

T asked if it would be ok to invite a gym buddy of hers who`s a cancer survivor. I said absolutely, that would be great. 

I’m afraid we might run out of the soft and easy chairs at the Second Cup ... but that would be a good thing.

Receiving A Metastatic Breast Cancer Diagnosis Video