PICC Infection is Receding

Last night around 8:00 pm, D and I took a good look at my PICC arm and the infection had receded below the line drawn on by arm my Onc. And this morning it’s even further back of the line. Yippee.

Yesterday throughout the day, the whole PICC line area on my upper arm was itchy … really itchy. And it got itchier into the evening … symptoms of healing? I couldn’t resist massaging the area a little bit with the tips of my fingers for some relief. 

Hopefully I can get back on chemo this Friday. Fingers and toes are crossed.

Why Stand Up To Cancer?

Unscheduled Clinic Visit

Last night the redness from my infection crossed the line drawn in by the Onc. And it’s more painful. D wanted me to call the clinic immediately but I just couldn’t bring myself to do it. I really don’t want the PICC line pulled out of my arm just yet. 

This morning I finally gave in and called the clinic as instructed by my Onc. I asked if I could come in and have a nurse look at it. The triage nurse said we don’t normally take walk-in traffic but … if I wanted to come in, she’d come down and have a quick peek. Excellent …that is all I want. 

D and I headed straight over there. The nurse had a look and said … well, even tho the infection has crossed the line it doesn’t look too bad yet … besides it takes two or three days for the antibiotic to kick in and since I had only been taking them for just less than two days, we could probably wait a bit. “Keep a close eye on your temperature.” she said and off we went. 

Perfect … I could now enjoy the weekend. To celebrate, we went out for breakfast.

PICC Line Infection Update

Yesterday throughout the day and into the evening, the area above my PICC line became redder and redder. My arm became increasingly sore with the redness. I especially felt a weird throbbing sensation in the vein on up my shoulder where the PICC line is located.

Around 8:00pm D and I looked closely at my arm, we even took a picture of it and concluded that the redness had moved up to the go-no-go line that my Onc had drawn on my arm. But the redness had not crossed the line so I did not have to go to the clinic. And my temperature was still normal.

We took another picture this morning and compared the two. There’s a small color change for the better in the area. It is less red and the soreness is way down. The throbbing is gone too. I’ve got my fingers crossed that the antibiotic is now kicking in.

Here is the picture taken last night showing the infection and my PICC line.

PICC Line Infection

This morning I went in for blood work to confirm I was OK for chemo tomorrow. When it came time to see the nurse, we discussed the side effects from last week’s infusion. I mentioned I had chills on Friday and Saturday, I had a sore acidic belly and a small dry cough up until a couple of days ago.

I also mentioned something else … this morning I noticed that my PICC line area was sore and my skin was reddish and warm to the touch. She looked at it asking if maybe I had a skin reaction to something. I said I didn’t think it was that because it was just too sore. I mentioned to her that the muscles in both arms and shoulders were usually weak and often sore but this is different. A second nurse had a look and thought it might be an infection.

The first nurse called my Onc in to have a look. He concluded that this was indeed an infection and rescheduled my chemo to next week Friday. He also put me on the antibiotic Cephalexin 500 mg for 7 days. Then he took out his pen and drew a line on my arm at the edge of the redness and said … if the redness goes beyond this line … to call the clinic immediately.

So now I’m back to checking my temperature 4 times a day for the next week at least. …Zaraza!

Remembering Robin - Race for the Cure

A year ago, I was recuperating from seven and a half weeks of radiation therapy. I was a one-boobie wonder – scared, scabbed, lopsided and swollen. I had the peach fuzz of a newborn on my head and my skin was a rainbow of varying shades of brown, black and purple. In other words, I was finishing up my treatment for breast cancer.

 

During the time I was fighting to get through all those treatments and keep a somewhat sunny disposition (I sort of failed at that part actually) a former colleague of mine was losing her fight with the same monster. Robin and I worked together over 10 years ago. We didn’t work directly together however, I always found her to be helpful and kind whenever I had a problem. She was one of those folks that you always just had a good feeling about. You know?

 

Learning that she was dying as I was finishing my treatment was startling and scary. And it made me more angry at this disease that seemed to just randomly choose people to take down. Robin was a good sister. She was a good friend to just about everyone at our company and I’m sure that she left an indelible mark on her personal friends and family as well. I often reflect that I didn’t have the energy to go and see her before she was gone. And for weeks after her death, I worried and chastised myself because I didn’t force myself to go and see her. I should have. I really should have. But since I can’t turn the clock back and make that right, I will push forward and do what I can do.

 

I want you to look at her face and realize that she represents millions of women (including myself) who struggle with this disease. Some of us make it – like myself – others of us are called home. If you are participating in the Race for the Cure, all I can say is THANK YOU. If you are not participating, but have made (or plan to make) a donation, THANK YOU. If you’re still on the fence… I can only ask you to consider doing anything that you can to help ensure that not too many more Robins have to be lost to us before a cure is found.

 

http://globalrace.info-komen.org/goto/nic_mclean

 

http://globalrace.info-komen.org/goto/PinkIsTheNewSexy

A Renewal Retreat for Women with Breast Cancer

As taken from Image Reborn's Living Beyond Breast Cancer website...

Our mission is to provide no-cost healing retreats to women who have been diagnosed with breast cancer. The focus is on encouraging women to reclaim their sense of personal power and to strengthen them in their journey toward healing on all levels and living fully.

Image Reborn's Living Beyond Breast Cancer retreat program is designed and facilitated by a highly professional staff with backgrounds and experience in addressing the special concerns of women with breast cancer.

We offer weekend retreats in a serene mountain setting in Park City, Utah.

Volunteer this Thursday at the West End House

If you enjoy being outdoors and helping kids, The West End House for Boys and Girls in Allston needs help clearing out and rebuilding a garden this Thursday!

When: This Thursday, May 27^th from 12PM to 5PM

Where: West End House Club, 105 Allston St, Allston, MA 02134

What: Come and demo a fire pit, clean weeds, trim hedges, and build a raised vegetable garden in the outdoor space off the art room!

What to wear: Comfy clothes that you don’t mind getting dirty and closed toe shoes

Please contact Robyn at reastwood@westendhouse.org if interested or need more information!

www.westendhouse.org

Chemo Cycle One – Day Five

Here is an update on my side effects.

I’m now waking up nearly every morning with a headache above the sinus area. It sort of disappears after morning coffee but comes back in the afternoon a bit stronger. I’m going to start taking Benadryl today and see if that gives some relief.

I’m finding my stomach has become a bit finicky too, with some burning acid indigestion. So I’ve pulled out some medication I had when I was on Taxotere … it’s called Metoclopramide and works like a darn. I’ve also started coughing a bit again. Don’t know if that is fluid around my lungs or not.

Generally I’m just starting to feel low on energy.

On a positive note, my finger tips and toes aren’t peeling from the Xeloda anymore. The edema in my right arm is down too which means it isn’t bothering me as much. As far as the swelling in my feet goes, I have minimal if any left.

And finally, I need a hair cut… can you believe that? Tho my hair is still thin from the Taxotere … it’s long enough where it requires some super model shaping and style.

Therapy is a beautiful tool

Well... after my post yesterday I still had a full on anxiety/panic attack anyway. For about an hour, I was heaving and writhing on the floor... crying, shaking and twitching. Looking and feeling a mess. Wondering where the "off" switch was on my life. It was a lot going on. It was scary and difficult to control. It was hard to convince myself that I wasn't going to die in that moment and that no matter what I was dealing with or going through, that I was going to be okay.

Have you ever had a really ugly cry? I mean, snot everywhere, tears that just jump off your face... its like that but ranked up like 10x. I am emotional, and I cry easily so tears don't scare me much. But when my mind continues to unravel and I feel like there is no bottom, no way out of the madness... and my body reacts harshly to those those thoughts... that's when I become afraid. That's when I'm in full on panic mode.

After I was under control a bit, I called my therapist and asked to be squeezed in to her calendar. I knew that if I didn't see her as soon as possible, the likelihood of another panic attack was high. And there was no telling where it may happen -- the subway, the office, on the street, who knew? I then got dressed and left to go to my dr. appointment that I already had scheduled for the day. I'll discuss that in a separate post.

I like my therapist. I really do. And its because I truly value her service to my life. I know that a lot of people don't believe in therapy, or think that it isn't a necessity to their life but I know that I've been helped by my therapist so I always encourage others to give it a try when their life warrants it. I haven't seen my therapist since before I started my chemotherapy in 2008. We sat down and caught up and then tried to figure out what was bothering me... so much that I was having nightmares and panic attacks. She found it really amazing that I had not had a panic attack at all during my treatment period. For all that I have been through, a moment where the world crashes around your head doesn't seem too far fetched. But honestly, I never imagined that I would have another panic attack in my life.

After discussing all the details of the past two years, my fears and my concerns... we stumbled on what was giving me grief. Turns out, it wasn't me that I was panicking over. It was my dad. This Friday marks the second anniversary of the day he almost died from a brain aneurysm. I had not realized just how scared I was by the idea of his death. And those emotions were lost in the shuffle of my own stuff because of breast cancer.

The interesting thing about therapy for me is that its like having a good conversation with an old friend. It never feels like what I see on television -- some strange person grilling me about my life, my childhood, etc. It always feels like a talk with someone who knows me really well and wants to help me see what I'm missing. Generally speaking, I am in tune with myself emotionally. That doesn't mean that I always understand what I'm doing or what I'm feeling but I do acknowledge those feelings and allow them to come. As long as I do that, I will stay balanced and okay.

I have a lot of things on my mind -- like everyone else -- and I have to make some decisions and changes soon. But at least now I know that the likelihood of me having another panic attack is low. That is a good thing.

PICC Line Dressing Change

Last Saturday I went in to the clinic and had my PICC line inspected and redressed. It’s usually only a weekly event but because I had it inserted just the day before, the Doc just wanted to make sure everything was in order.

So while the nurse had the dressing off, I thought I’d take a snapshot of the PICC in my left arm.

Pretty cool huh? … NOT!

Anxiety/panic attacks and breast cancer

There is a train of thought among breast cancer survivors that stress could be a principle reason why someone gets breast cancer. I don't believe that there are any studies that can connect stress directly to breast cancer -- but that doesn't stop the conversation from going on among survivors. We all know that stress can cause havoc in our lives and that it is detrimental to our health. But, the nature of the world that we live in leavese many of us  feeling like you simply have to deal with it. Stress is a part of life -- for all of us.

Similar to stress is anxiety. The worry about something that may happen in the future or that has happened in the past. However, anxiety is usually based upon our imagined fears moreso than something that has actually happened. It is the eternal... "what if" question(s) that pushes us into a bad mental and physical space.

I mentioned recently that I was sick all last week. And after having a low-key but fun weekend, I thought I was ready to return to work and get back into the swing of things. But... instead, this morning as I was preparing for work... I started falling down the rabbit hole directly into an anxiety attack. I haven't had one of these in years. Until just now. (which is why I'm writing at the moment... writing calms me and brings me peace and I needed to bring myself down... before I got too far out of control)

During an anxiety attack, or a panic attack, the person literally feels as though some impending danger is rising against them -- possibly to the point of death. The escalating tension can push you so far that you start to hyper-ventilate, shake, cry... and so forth. Your body will react to the anxiety if you don't find a way to calm yourself down.

It is embarrassing to write these words. Knowing that thousands of people will read about one of my deepest shames doesn't make me happy this morning. However, in order to deal with anxiety, you have to know how to recognize when you've been triggered and you have to be able to find a way to calm yourself. Otherwise, you can end up in a really bad space. Considering how fragile I am in general, I would guess that my anxiety could easily land me back in the hospital. I'm in no hurry to sit in the emergency room, or have an ambulance come and take me away this morning. So I'm writing. I'm purging. I'm telling you what I'm going through... so hopefully I will push past this and be able to get back to a good place.

Over the weekend, I had an outrageous nightmare. It woke me out of my sleep -- which was really surprising because I was very comfortable not thinking about much when I went to bed. My nightmare was ridiculous but it scared me deeply. Caused me to get out of bed, move to another room and pull out a book to read. I couldn't close my eyes again. That nightmare stuck with me and I realized last night that my fear of it recurring kept me from falling asleep.

Those are classic signs of a problem. I haven't talked to my therapist yet. I actually haven't seen her since shortly after my diagnosis in 2008. Without talking to her (or anyone) I'm going to guess that I am probably dealing with issues of post-traumatic stress and anxiety. Writing will help me in moments like this -- when I need to do something quickly to move me from that scary place to a calm space. But it won't fully fix the problem. So, I'm going to have to do something and fast.

My breathing rate has calmed down, and my heart has stopped racing. So I will resume getting ready. I hope that none of you will think that I'm losing it because I shared this. But if I have to bear the strange looks and hushed giggles of people who think I'm losing it after all that I've been through, rather than continue to have moments of anxiety that feel so real that I think my life may be ending... I'll take the ridicule.

And give myself a chance to push beyond this next step of healing.

~Nic

PS. Have I said lately how much I truly HATE cancer? Well, I do. (sigh)

Getting past the week from hell

This has been a hard week for me. I overdid my fun last weekend and set myself up for a bacterial infection that kept me out of work all week. Five days of fighting a stomach flu is NOT FUN. A week of eating like a bird is not fun. But, I feel like I contributed to my own dilemma by not keeping in mind that I cannot do now what I may have been able to do 20 years ago. I just can't hang like I used to.

Its okay. I'm older now. I will make adjustments.

The second part of my week from hell is... I am an emotional BABY. There is a guy in my life that I like. (just going to put it out there plainly) But I am having a difficult time finding my equilibrium with this. Without going into details... as much as I would like to believe that I want to be in a relationship; that I would like to be married one day.... I really don't know whether that is possible at all. I am distrustful. I am scared. I am hesitant. I am unsure of what I believe from moment to moment. Its like I can't trust myself to acknowledge what I see and accept it for what it is.

Sigh. (Shrug)  But, with all that said and acknowledged... I can even be cool with that. Hey, the truth is that I know I'm a work in progress when it comes to relationships, affection, love, etc. I've known that about myself for a long time. My heart and my head simply don't speak the same language. Makes it difficult to trust my own choices. If I stay and move forward... have I chosen a good person? Will he be in it for the long haul? Can I make him happy and bring something good to his life? Can he do the same for me? On the other hand... If I leave and cut my losses... did I miss out on a great person? Is this fear talking or am I being logical? Did I miss the context clues that showed me that he was not the one? One part of me says one thing, another part says something totally different. Its confusing and yet makes sense.

The cherry on top of the sundae is the third part... every time I have to go through another procedure, appointment, etc. relating to this stupid breast cancer, I end up farther and farther behind the economic eight-ball. I make a pretty average salary. In the area where I live, its better than some but far from what many of my friends and peers earn. And honestly, that's cool most of the time. I try to live within my own means and not act as flossy as I may feel. I know that I don't make six or seven figures and I act accordingly.

It is one thing if you over spend because you like expensive handbags or watches or shoes. Its one thing if you spend twice your paycheck buying jewelry or video games or whatever your vice is. That is one thing. That is something that you can change by exercising some restraint and some willpower. But when the bills come because you're doing what you need to do to get your life back after breast cancer... it feels very unfair and it seems overwhelmingly difficult to get a handle on.

How do you bargain shop when you need a surgical procedure? Or physical therapy? Or medications? I know that a lot of people end up in bankruptcy court because of medical costs. I am trying not to be one of those people. But it gets more and more difficult every month because the costs continually add up. The bills continue to keep coming. I am growing more and more tired and frustrated about it. Every choice about my healthcare becomes this crazy mathmatical equation where I try to figure out the cost/worth of my time, my health, my job, my finances and ultimately my happiness and my joy.

I want to enjoy what life I have left. I don't like to whine about my life because I know that to many people, even with the breast cancer experience, being single, never married and childless seems like a fantasy dream. Time to think whenever I want. Time to do whatever I choose. Money to spend however I see fit. No one screaming my name, needing me to take them here or there or just generally expecting me to show up in their life and make it all better. (shrug) I know that many people envy my freedom. And for the most part, I understand.

For all the mothers that I envy, all the marriages that I am wistful about... I know that each person's life story presents its own challenges and difficulties. I look at those friends and family members who are in love (either with their spouse or their children or both) and I sigh. I envision myself as wife and mother... and in my version of the movie, its wonderful all the time.

Today, I am another $4000 in debt. Which means that something I wanted to do will have to be pushed to the back burner for some other time. (shrug) My oncologist saved my life but I'm wondering whether this new life will ever be mine again.

Video - William Li: Can We Eat To Starve Cancer?

William Li offers a new way of thinking about treating cancer and other diseases. Anti-angiogenesis uses drugs or substances to stop tumors from making new blood vessels. 

William Li speaks on eating cancer-fighting foods that cuts off the supply lines and beats cancer at its own game.

Cycle One - Day Two

I had my Vinorelbine just before lunch yesterday and late in the afternoon I started getting a bit of a head ache … felt a bit of nausea too. Around supper time I got the chills. I just couldn’t warm up so I hopped into bed with a couple of comforters on top of me. By the time D came to bed, I had warmed up and ended up sleeping pretty well through the night.

This morning I woke up with a stuffy head … but overall I’m doing good.

PICC Procedure and Chemo Infusion

This morning I had my PICC line inserted. A doctor first attempted to use the same PICC vein used last year but after two attempts he said there was too much resistance and we needed to find another vein. So he moved to the cephatic vein which is located more to the front of my upper arm. That one went in like a breeze. Besides the needle for the freezing … I really didn’t feel a thing.

After changing back into my street clothes, the nurse wheeled me to Daycare for my Vinorelbine infusion. The actual infusion was only about ten minutes but between that, the flush and the liter of saline, I was outta there in just over an hour.

My chemo cycle is a little bit different this time too. It’s still a three week cycle but with treatments on two of the weeks and one week off... nothing like changing things up a bit.

Overall, I’m feeling fine … a bit woozy as I was getting the chemo but really nothing to complain about. I go in tomorrow for a dressing change on the PICC line just to make sure everything is fine … after that it will be weekly changes.

Today’s Oncologist Visit

During last month’s visit my Onc said options were limited for treating the new growth on my liver. My choices were the study drug TK1258 or Vinorelbine (Naveltine). Because I don’t qualify for the study drug ... Vinorelbine is it.

Back then I didn’t have the courage to ask the Onc what he meant by… limited options.

Today I asked the question. How many options do I have left? He said if Vinorelbine fails, I will be put on compassionate care. 

I asked if I could try DCA and he said he would look into it.

Where are the black people with cancer?

I was just looking at a developing story on the New York Times blog about life after cancer. http://well.blogs.nytimes.com/2010/04/08/picture-your-life-after-cancer/  And I was thinking about submitting my picture and a brief story to the mix. But as I looked more closely, I was amazed that there wasn't at least one other brown face. Not one. How could this be possible in the NYTimes? I mean, this is a global paper. Don't black folks read the NYTimes?

I know that cancer is pervasive in our country. I know that millions of people are living and surviving this horrible disease right now. The numbers for breast cancer survivors rattle around in my brain every day. But whenever there is a story or a book or a movie about cancer... I can't help but look for faces like mine. And I rarely see them. It is so amazing and yet maddening that we are not often depicted in pictures or mainstream stories. I don't quite get it.

Don't get me wrong. I do identify with the stories of my sisters of other races who battle breast cancer. I really do. But I am a black woman and I like to see stories and pictures of people fighting this battle who look like me, think like me, showcase cultural references that are similar to mine and so forth. I am constantly surprised that our stories just aren't out there too much.

I suppose that means I should do something to help change that.

PICC Line Cover Up in Public

Friday I get a PICC line inserted for my next round of chemo. D and I have been sitting here brainstorming on what I can use as a cover my PICC line up in public. With my last PICC line, I noticed some people staring at my left arm on warm days with a t-shirt on.

My PICC will be between my elbow and shoulder and I’m looking to cover up just the silicone tubing and colored IV part. 

Any ideas out there?

They say that sex is different after breast cancer treatment

Breast cancer is a trip. The tricks that it plays on your mind are vicious and severe. Even after your body has healed from the treatment and the medications and the surgeries... you still may feel unlike yourself. Part of getting back to normal includes dealing with intimacy issues -- including sex but not just sex. It can be very difficult just to be close and intimate with someone. So many fearful thoughts are always just under the surface ready to throw a sister completely off in a moment.

Fighting against the mental images of your body as mutilated and unappealing is really hard.... And adding to the misery are physical symptoms that may really throw you for a loop. You may have to deal with issues of vaginal dryness, loss of sensation (due to damage to nerve endings), early menopause, and other symptoms. And there is also all of the emotional baggage that goes along with breast cancer that can come between a woman and her lusty side finding satisfaction between the sheets.

As we age, our sex life does change and become different. Hopefully the changes are good ones -- mainly because after doing it for awhile, you now know what you're doing and the pleasurable parts are easier to get to. (wink)  But what if you are a sister who is trying to figure out how to get back to being active and lusty after feeling like a pin cushion for breast cancer for a year or two? Or what if you're a married woman who finds that her husband is having a really difficult time being intimate with you now that its time to get down? How do you manage these issues?

You know how? You make a plan. You treat yourself nicely and you take time to learn and relearn your body.

One thing I'm finding really wild is that contrary to what I've been expecting, my sexual libido seems to be getting higher and not lower. Now, there was a long stretch of time when it was non-existent. But those days are gone. Long gone. Long, long LONG gone. (laughs) That's good and its bad. Its good because that means that when I do have sex it isn't painful -- as it is for some women. And if I can manage to relax my mind, it is absolutely enjoyable. I am grateful and thankful for those things. However, I don't think that what I'm experiencing is all that normal. Its great for me but I know a lot of women who don't have this same experience. Many of my pink ribbon sisters struggle with finding their equalibrium sexually and they don't know how to navigate that area of their life anymore.

I will be honest, it requires a level of trust that reminds me of my early days of sexual exploration. The fear that I have sometimes when it comes to a moment of intimacy is palpable. But, I can usually get over it when I remind myself that I've chosen to share myself with someone who cares for me and sees me as beautiful. You would be amazed at how much a compliment from the right guy can turn your whole world around.

In reading different breast cancer message boards and blogs, some of the stories about sex -- rather the lack of sex after breast cancer -- are absolutely heartbreaking. There are women in the world who really feel lost, alone and unlovable after going through the hardest thing they probably have ever experienced. It is really sad and unfair. But I want to offer a little advice and a little hope that your sex life can be resurrected after breast cancer. Because it really can.

First things first... you might want to buy some toys if you don't have any. If you do, then great! Pull 'em out and get reacquainted with yourself. If you don't have any, make it a lusty date and take your man with you to the store so he can help you pick out some stuff. (If that is just too much for you, you can order things from the privacy of your home on-line and have it delivered to your door in non-descript packaging.)

My second suggestions will be to add some sexy clothes/lingerie to your shopping list. Oh, and be sure to get some good lubricants too -- try something new, something flavored perhaps.

Third suggestion... plan a romantic date with yourself. Yes, with yourself. Get some champagne and maybe some chocolate-covered strawberries (okay, that's my personal favorite thing) maybe some pineapple... whatever you like. Put on something that makes you feel sexy -- something soft to the touch preferably -- and then just spend some time remembering what you like and how you feel in your own skin.

A big part of the difficulty with finding your mojo after breast cancer is that after going through months (or years) of treatment, your body simply does not feel the same. You spend doctor visit after doctor visit, flashing your body to strangers. It becomes numbing after awhile. So you have to make an effort to get back to thinking of yourself as a sexy individual and not just a medical case. You're a woman, a beautiful sexy woman who has exhibited more strength than most people can imagine tolerating. You are a hot girl -- you just have to remind yourself of that.

After some time with yourself, make a date with someone you find attractive. (I do mean your spouse if you're married) Don't get too far down the road with it, just see if you have any chemistry. Do you feel anything when you're with him? That sort of thing. Butterflies can show up when you're not expecting them to. You just have to go with the flow.

I'm not going to dictate to you how you should go about having sexual intimacy but I will say that talking will help. Tell your partner if you're feeling scared or vulnerable. It will help ease the tension if he knows that you're not thinking that he's doing poorly (laughs) but instead may be worried about something else. Do as much as you want to do... and nothing that you feel uncomfortable doing.

The reality is that for us single girls, there may be men who don't find you attractive or who don't want to deal with your breast cancer baggage. You know what I'm going to say to that, right? Eff 'em. You don't need THAT guy. The guy you're looking for will look at you and see beauty and tell you that. The guy who really wants to be the one who helps you find your mojo... that's the one you're looking for. Because part of the way that we see beauty in ourselves is to see it in someone else's eyes when they look at us.

Now, let me be honest. The possibilities that sex can be difficult and/or painful does exist. But like every other muscle in your body, you've got to use this one in order for it to stay in top working condition. (laughs) Depending on the type of treatment you've received, you can experience serious dryness issues and even atrophy problems. (yes, that does mean what you think it does) Whatever you're experiencing -- fears, pains, confusion -- you absolutely can and should discuss them with your oncologist or your gynecologist at your next appointment. Getting back into the groove sexually after cancer is difficult. And it does require that you be good to yourself. But it is totally possible.

Totally. (wink)

Relay For Life

From the their website ...

Join the biggest Cancer event to make the biggest difference

Canadian Cancer Society Relay For Life gives you and your community the opportunity to celebrate cancer survivors, remember and honor loved ones lost to cancer and fight back against all cancers.

Event Details:

Edmonton's Relay for Life 

May 29, 2010 

7 p.m. - 7 a.m.

University of Alberta Foote Field

Edmonton, Alberta

navigating the new normal

I just read a blog entry by another breast cancer survivor. We are almost the same age and she was diagnosed a short time after I was. We were introduced by a mutual friend and have become good internet friends from the first conversation. In her most recent blog post, she discussed that she finished her breast cancer treatment about a month ago -- and just the day before her 40th birthday -- and she was having difficulty navigating the "new normal".

I felt a wistful longing when I read her post because I have the same feelings of crazy guilt, unsteadiness and fear of the unknown. Its been a year since I finished my radiation treatment. Its been over 6 months since I had my last herceptin treatment. Its been a year and a half since my final chemotherapy infusion. And, as horrible as all of those stages of this fight were -- I miss it.

I'm not totally crazy. And I'm not saying that I miss being sick. But I miss the cocoon of warmth and love... and safety... that grew to be my "normal" during my treatment. I miss the comfort I felt knowing that someone was working diligently to make me better. That someone was taking control of whatever went wrong in my system and caused me to have cancer in the first place and they were fixing it; fixing me. So, when Alaina remarked in her blog that she was secretly feeling guilty about longing for more doctor appointments, more life-saving treatments, etc. I totally understood that feeling. I've been living this feeling for awhile... too afraid to really look at it head on though.

I can't be saying or feeling that I want to go back to having cancer. But in way, that's what it feels like. I feel stained. Even though, right now I'm living in NED-land (NED= no evidence of disease), I feel tainted and stained. I feel like the cancer left a mark on me -- more than just my scars -- but a mark on my heart and in my soul that I cannot shake.

It never goes away. No matter how much I try to avoid the feeling, I still FEEL like the cancer-girl. I still identify with those feelings, those fears. I still look in the mirror and see a totally different woman than the one who existed the day before I got the call confirming my cancer diagnosis. I am so different now. I'm not as good, not as sharp, not as together... as I'd like to believe I used to be. I'm scared (still) a lot of the time about everything. And even when I don't think I'm thinking about it -- my actions tell me that I am still worried, still living like a scared person.

These days... I am over-compensating for the time I feel that I missed. I am guilty of doing dumb things with little forethought because I need to feel differently about my life. I want to show the world this really brave face. I want to be this super-pulled together sexy, confidant woman and she... lives on the edge a little bit, she's the life of the party, she's unafraid to date and dance and drink and laugh. Because she's practically a super-hero right now.

Breast cancer survivor girl!! Leaps tall buildings in a single bound. Has her entire life changed in a moment but... she bounces back better than ever and ready to take on the world!

Oh, but I rarely feel like that girl. Now, there are days when I do feel empowered and bold. But, many days I still feel small and weak and fragile. And its incongruent to feel that way when I am supposed to be healed and back to normal. Good as new.

I don't know. I'm not sure whether other survivors feel as conflicted as I do many days. I imagine that they do. Alaina said that she's taking it one day at a time, and simply putting one foot in front of the other. I think that is a great way to take this on. Because, at the end of the day, all you have is right now; this moment. Nothing more.

I've been mistreating myself trying to recapture something I lost when I was diagnosed with cancer. Mistreating myself by not eating properly, not getting enough rest... mistreating myself by partying too hard, not accepting that I may really need to slow down -- not speed up. I keep thinking... "I missed 2 years of my life fighting breast cancer". But is that what happened? Really? Because looking at this blog... I was doing a lot of living even while I was fighting for my life. I wasn't partying a lot but I was alive.

Can I be even more honest and more frank? (Is that even possible?)  I don't like my life too much right now. I mean, overall, I'm happy I think. I'm cool. But I'm not estatic about my life. I'm searching for something but I'm not exactly sure what I'm looking for. I just know that the new normal isn't as much fun as I thought it would be.

I don't really know what I'm feeling... but I know that the fear of recurrence still strangles me in my sleep. I know that the face in the mirror looks older and harder than it did 2 years ago. I know that the scars that zig zag across my body recount a story that I don't always want to remember.

Some days, its just really very hard. But then... I guess that is what normal is too sometimes, right??

My New Camera

Well… now that the nice weather is here, I’m finding some relaxing moments by going to the various parks around town to just sit and take in whatever is going on. To give me something to do, I take my camera with me. I always try and look for some landmarks, nature or scenery to photograph.

What makes all this more interesting is my new camera. It’s got a through the lens viewfinder that allows me to easily see what I’m trying to shoot. Now I can take pictures in any type of light instead of me trying to shade the screen on my old camera. This feature is way cool. Now I just use the back screen for reviewing.

Then I head home and downloaded the pics on to my laptop. I must say, about one in 20 is actually a pretty good photo. I’m thinking about joining a camera club on the internet … we’ll see.

Book Recommendation

About a year ago, my friend Arlene from The Journey blog told me of the book called; Cancer is a Word, Not a Sentence by Dr Robert Buckman. I really liked this book, and you might like it too.

It’s a practical guide written for folks that have just been diagnosed with cancer. The goal is to help those people and their families to make sense of what happens next and to plan a course of action. Dr. Buckman describes everything that comes after the diagnosis, including tests, the stages of the disease, treatment options and follow-up.

A bit about the author… Dr. Buckman is practicing medical oncology at the Princess Margaret Hospital (Toronto). He is a Professor at the Department of Medicine at the University of Toronto and also holds an adjunct professorship at the M.D. Anderson Cancer.

My Treatment Plan B

Yesterday I got the word from the research nurse that I will not be going on the study drug TK1258 as hoped. The study group requested a tumor sample. Believe it or not the Cross Cancer Institute had a sample from my original surgery back in 2000. They sent a slice off to Arizona, to be tested. Unfortunately this study is full for my type of breast cancer. Mine is very common.

So, on to plan B. Thursday I will have blood drawn for white blood cell count and see my Onc. Friday I get a PICC line; so no blood thinners the day before and no food two hours before the PICC. Then I’ll wait a bit to make sure I’m still feeling good and then off I go for my first round of Vinorelbine (Navelbine).

So how do I feel about all this? Well, I guess I’m ok with getting the PICC line; it’s just that it constantly reminds me of cancer and treatment. It was just so nice not having any attachments for the past six months.

This all means way more visits to the clinic… I’ve been down this road before, yuk…. And double yuk.

LBBC Conference Podcasts

The Living Beyond Breast Cancer organization is now offering podcasts of the 4th Annual Conference for Women Living with Advanced Breast Cancer. It was held at the Philadelphia Marriot on May first and second. If you were unable to attend, this is an excellent way to know what went on and may help you decide to go to the next conf.

If you attended the conf, you might want to review a session or two. They were all great. The audio quality is quite good even on my laptop using Windows Media Player. All of the topics discussed focused on Mets.

The podcasts are all free and downloadable at http://www.lbbc.org/transcript-category.asp?transcriptcategory=advanced

DCA – Our Best Shot at Cancer?

Dichloroacetate or DCA is an inexpensive drug already being used to treat other conditions, is giving new hope to cancer patients. It works by not killing off cancer cells, but by simply reprogramming them. It shrinks the tumors until they are gone by altering a cancer cell's metabolism. I believe this is the real deal here for cancer treatment.

At the University of Alberta here in Edmonton after two years of lab work, the researchers conducted a small clinical DCA trial consisting of five patients with a deadly aggressive type of brain tumor called Glioblastoma. This cancer kills most patients within 15 months of their diagnosis. After 18 months on DCA, four patients are still living and one patient died three months into the study. It appears that this drug needs some time to get going. http://www.dca.med.ualberta.ca/Home/Updates/2010-05-12_Update.cfm

The kicker here is that this drug can’t be patented, it’s decades old. No drug company wants to fund the research necessary to bring this drug to the approval stage and then on to regular cancer treatment. The team at the University of Alberta needs your money to keep going.

Please donate to help Dr. Michelakis and his research team at the University of Alberta put their research into high gear. The donation link: http://www.dca.med.ualberta.ca/Home/Donations/

Physical therapy is great

After my last debacle on the airplane trying to lift my baggage over my head to store it... I accepted that I needed some real help with this arm. (reason-number-6541835-why-i-hate-breast cancer)

I don't have a really good reason/excuse why I had not tried physical therapy before now -- other than I simply did not want to put one more thing on my already over-crowded schedule. But between the lyphedema (swelling) and the very limited range of motion with my left arm, I simply could not avoid the issue any longer. Not if I was trying to actually function well in this world. Since I do so many things alone -- purely a preference -- it was time for me to accept that I wasn't in the best of shape to be jetting around the country with one arm that was practically useless.

So... I dug around in that pit I call a bedroom... and found the sheet of recommended hospitals/lyphedema specialists that I was given at my breast care center and I made a choice. In actuality, my choice was pretty much random and not based on any research at all. I just trusted my gut and went on a limb. I chose Georgetown Hospital to be evaluated and treated for my lyphedema. (Honestly, I chose Georgetown because it was the closest to my job.) But, now that I've been there twice, I am very pleased with my choice.

First of all... my therapist is super nice. I don't know why this surprises me but it does. Her name is Jennifer and she's very knowledgeable about lyphedema and its treatment. A lot of her patients are breast cancer survivors.  That bit of knowledge alone put me at ease.  In the two visits that we've had, I've learned that my issue isn't severe (thank God) and that exercise and massage really do help.

One the one hand, I feel very silly walking my fingers up and down the wall -- that's one of my exercises -- but seeing how much it has actually helped keeps me from feeling like I'm wasting my time. The massage that she does to help move the lymphatic fluid back into my muscles as well as the work she does trying to relax my muscles that have tightened/shortened since my surgery is great. Its amazing what a little assistance can do to make your life better.

Once again, I am thoroughly grateful for great health insurance.

Jennifer mentioned to me that some of the muscles in my shoulder area are so tight, they feel like stone. How crazy is that? I've been walking around for a year, hitched up on one side -- trying to make things better/easier on myself and actually making things worse I think. But, like the saying goes... when you know better, you do better.

I still haven't totally gotten the hang of all my exercises yet. And truthfully, while they look so very simple and easy... my arm and shoulder do hurt a bit afterwards. But they work.

I'm travelling again. And this time, I lifted my computer bag into the overhead storage all by myself. It was still a little bit of a struggle but I definitely felt much better about my effort. So... I don't know how much Georgetown and Jennifer are charging my health insurance company for this work but I can honestly say its worth every penny.

Physical therapy is a beautiful thing.

One Thing I’ve Learned From Neuropathy…

…is to take care of my feet. On my trip last week I inserted gel insoles into my fisherman sandals and decided to go bare-footed to try and stay cool. This only worked until the temperature got hot and my feet started swelling and burning up. 

I ended up going to my room and soaking my feet in cold water. Once I cooled my feet down, I figured I’d remove the gel insoles to allow for the swelling. Before you knew it … I was feeling refreshed and good for a couple more hours of sightseeing. 

By switching things up on my feet the pressure points vary which gives parts of my feet a break to carry on.

The Lion King

Something I've always wanted to do was to see a Broadway show on Broadway in NYC. Well I did it. I saw The Lion King at the Minskoff Theater which was right across the street from the Marriott Marquis, where we were staying.

So why the Lion King of all the Broadway shows?

Well, somewhere back in 2000 when I was first diagnosed with my cancer I was looking for something, anything that would help me make sense of this cancer journey I was on. One day I heard the song, Circle of Life sung by Elton John and tears came to my eyes.

The lyrics helped me make some sense of it all. I think we're only on this earth a very short time and we need live life to the fullest as death comes far too soon ... because that is the circle of life.

Anyways, enough philosophy … here is a video sneak peak of the Broadway show Lion King. It was amazing and I would see it again tomorrow.

Times Square

I got into New York City on Sunday evening the day after the NYC car bomb incident. So there was a lot going on to say the least. Times Square was inundated with police, the media and of course tons of onlookers.

Every time we saw a gathering of people we raced to see what all the excitement was about. It was usually someone important being interviewed. I got some great shots … including Police Commissioner Kelly being interviewed , Katie Couric of CBS as she was filming a clip for the evening news plus a variety of other reporters doing live shots from Times Square.

I also got up close with Mario Lopez. He was shooting a clip for Extra.

There was also a huge police presence at Times Square.

Our hotel which was just a few feet from where the car bomb had been parked so it was under tight security. We had an explosive detection dog and handler in our lobby plus all vehicles coming through the hotel were checked. All trunks were opened and the underside of vehicles were looked at with a mirror. There was extra security everywhere.

The Big Apple

While I was making my plans to go to Philadelphia for the conference, my sister who lives in the US asked if I’d like to meet her in New York for a couple of days. Well let me tell you … that was music to my ears. I’ve always wanted to visit the Big Apple and here was my big chance.

So Sunday after the conference, I jumped on an Amtrack train from Philly to New York. An hour and twenty minutes later, I arrived at Penn station in New York. The city was bustling with activity. My first order of business was to hail a cab. I looked left and saw a lineup of people waiting for cabs. I looked to the right and saw a young girl step onto the road and lift her right hand way up in the air. Seconds later, a cab pulls up and off she goes. I think to myself, when in Rome … I went to the exact spot she had been when she hailed her cab and I did exactly the same thing … lifted my right arm way up. It worked … I was now on my way to the Marriott Marquis on Times Square.

When I get there, I jump out of the cab, grab my luggage and into the hotel I went. I walk around and tried to find the front entrance to check in, looking a bit lost because I couldn’t find it … a gentleman in a red jacket asked if he could assist me. He directed me to the eighth floor. They contacted my sister and she came down to meet me. When I saw her tears started streaming down my face … not just a few tears … the big ugly cry as Oprah would say. I think It was a buildup of emotions … from the conference, from the fact I made it to New York after having gone through some pretty tough times … I was there … the Big Apple. I was crying so hard a complete stranger came and asked if everything was all right. Tho I was embarrassed I couldn’t stop the tears.

Anyways, I’ll post a few pics and share more over the next few days …

  

The Conference in Philadelphia

The morning of the first day began with registration. There was a flurry of activity … people were chatting, looking at exhibits and enjoying a yummy continental breakfast. There was a lot of excitement in the air.

The day began with Judy E Garber, MD, MPH who spoke on treating advanced breast cancer including medical and research news. She only spoke a few sentences when she broke down in tears. It happened when she started to speak about a breast cancer patient she’d been treating for many many years. They had exhausted all treatment options and this ladies journey was coming to an end. 

In the afternoon, Judy E Garber spoke again. This time she focused on treatments and strategies of bone mets.

After a short break we had author Bruce Feiler speak on his experience with bone cancer and author Donna Deegan spoke on her experience with metastatic breast cancer. 

On the second day, I attended a session given by Linda T Vahdat, MD on the treatments and strategies of liver and lung mets. 

After that there was only one more session and that included a panel of five experts with expertise in metastatic breast cancer. The panel addressed a variety of concerns including medical and complimentary therapies, symptom and side-effect management and emotional and legal issues. 

There were many other sessions offered but we picked and chose what interested us most. To be honest, I was overwhelmed with the amount of information offered. The Living Beyond Breast Cancer organizers said they’d be offering podcasts of the sessions but I checked today and nothing is on the website as of yet. I’ll continue checking and let you know when they appear. Here is a link to their blog where they give an overview of the conference.

How My Conference Trip Came About

About a month or so ago, I was so fortunate to receive an email from Lisa Rendall. I had not known Lisa prior to this email but I was very happy to meet her. Not only is she a fellow mets gal but she also introduced me to the idea of going to a metastatic breast conference in West Conshohocken, just outside Philadelphia. 

The conference was put on by Living Beyond Breast Cancer. After reading her email, I quickly went to the website and was immediately interested. What held me back was fear because I would be going alone. I thought I was physically strong enough but mentally ... I’ll be honest, I was afraid. It took me some time to make the decision and when it was made, a weight was lifted off my shoulders. I sent my registration in and wasn’t looking back.

Now I needed to book a flight. I only had a few short weeks before the conference so I knew all the good flights would already be gone. Well it turned out to be a good thing because I received an email from my friend Arlene and she said Air Canada was having a seat sale. I jumped on the phone and booked my flight. I ended up making a few stops but saved a bundle.

Once I booked my flight I then decided to mention the conference on the blog. That is when I got a couple of emails from some mets gals in Calgary saying they were also attending. In fact we ended up connecting in Calgary as we were all on the same flight to Toronto. It was nice to have some company along the way.

I now needed a place to stay so I booked a couple of nights at the Philadelphia Marriott West. I wanted a roommate to help share the costs. It was suggested I go to the discussion board on the Living Beyond Breast Cancer website. That is where I connected with Vilma. She and I became roommates and friends. Since then Vilma started a blog entitled … Not Just Sadness, where she shares her cancer story.

While I was making plans for the trip, I received an email from Chris Lynds from The Edge of Light blog. She said she was also going to the conference.

And finally, one gal from a support group here in Edmonton made a last minute decision to come to this conference. What a great time it was meeting these gals.

I have to thank Lisa for sending me the email that started this whole process.