Lymphedema update: The bandages are working

I HATE these bandages. I’m just going to put it out there because its constantly on my mind. Un-sexy. Uncomfortable. Unpleasant. BUT… they work. That picture is of my arm after my bandages were removed during physical therapy on Tuesday. My swelling has been reduced significantly and my arm is just about back to its normal size. As my therapist said… “it may seem like a pretty primitive way of treating lymphedema but it does work”.

 

Gotta agree with that.

 

I’m bandaged up again. And will probably be bandaged up for the next 2 weeks. But, progress is being made. My progress would be more significant if I had not had surgery a few weeks after I started physical therapy. But I’m not complaining. Besides, my new boobies aren’t that bad. Still getting used to them though. And I think I’m having some healing issues with the breast that was reduced – its not looking quite right but we’ll see what the surgeon says.

 

All in all, its an okay day.

Feeling Tired and Agitated

Yesterday I was a tired puppy. I thought I slept well thru the night but got up feeling tired and agitated. I had breakfast and then laid down for what turned out to be a two hour snooze. Still feeling out of sorts, I decided to get out of the house and shop to burn off some steam.

Well that didn’t really help either as I just got more tired and grumpy as the day wore on. After supper, I ended up taking half an Ativan and hit the pillow just before 8.

This morning I’m up and feeling pretty good. I’m not agitated and that’s great because I have afternoon coffee lined up with the Sears group gals and supper with some friends I used to work with.

PICC Line Covers R - us

I just got back from having coffee with RJ, one of my knitting group buddies. She is an amazing knitter and whipped up this PICC line cover for me. Not only does it look great but if fits real good too.

RJ is going to send me the pattern that she created just in her head. And I’m going to go out and get one more set of circular knitting needles to see if I can whip up something similar.

I’ve been trying different sizes of knitting needles and different types of yarn and still haven’t come up with something that works for me. I guess I just don’t have that creative gene. Somehow making these PICC line covers has become more of a challenge for me now. More than anything, I’m going to make one that looks and feels good too … and that’s final.

An Inspiring Cancer Video

My friend Hans from theBluesman sent me this very inspiring 16 minute video.

As taken off the TED website …

Renowned classical Indian dancer Ananda Shankar Jayant was diagnosed with cancer in 2008. She tells her personal story of not only facing the disease but dancing through it, and gives a performance revealing the metaphor of strength that helped her do it.

PICC Line Stuff

Friday I was at the clinic getting my PICC line redressed … it’s a weekly event. It‘s been a while since I had seen this particular nurse. She asked how I was doing. I went over my particular situation, reminding her I was stage 4. Oh she says, I probably knew that at one time but forgot.

She cleaned up the skin around my PICC. For a while now, I have had a scab forming around the line itself. Every nurse I’ve talked to says the same thing; we won’t pick on the scab. If it happens to fall off while we’re cleaning it then that is ok. Otherwise we’ll wait for it to come off on its own.

Tho I’ve knitted a few well-fitting PICC line covers, I prefer to cover my PICC line with something called Coban wrap. It can be bought at medical supply stores or at veterinary supply stores. If price is a concern, the vet stores offer it for a much better price than the medical supply stores.

I prefer the skin tone color as it helps camouflages it well … but if you prefer a bit of color … Coban comes in many bright and exciting colors. The best part is that this stuff does not move at all. It grippes the PICC gently and stays put for a week at a time …and I like that a lot.

American Cancer Society - Choose You

The American Cancer Society is launching a new nationwide movement that shines the spotlight on a sobering statistic: one in three women will get cancer in her lifetime. Choose You is a unique new initiative designed to inspire women to take control of their lives and put their health first to stay well and help prevent cancer. For more information about the Choose You movement, log on to ChooseYou.com.

Fatigue Setting In

After 20 treatments of Taxotere, I thought Xeloda was a holiday. My energy level was coming back. I was feeling stronger both mentally and physically and that made for a pretty good quality of life. It kinda felt like I was accelerating.

Now that I’m finishing my second cycle of Vinorelbine I’m being reminded of some of the fatigue I experienced with Taxotere. I am starting to feel tired all the time. I am losing some of my enthusiasm to do stuff. Everything requires a bit more effort these days. I just want to constantly go for a nap.

Mentally, the fatigue is a challenge; I can’t stay on top of anything. I’m feeling a bit melancholy. And this is only cycle two of Vinorelbine. I’ve got mixed emotions, if it works and the shrinks my tumors I’ll be extremely happy … but on the other hand, I won’t be happy with just the fatigue.

Hair chronicles: A follow-up to my Miss Jessie's trial and what's going on with my hair now

So, a few months back I stepped out on a limb and purchased a whole bunch of Miss Jessie's products to help tame my post-chemo curlies. After some trial and error with the application - primarily trying to figure out how much wetness to product ration would produce the best looking curls, and how I could style my hair the fastest way possible, etc. - I fell into a good rhythm with the products.

I learned that I liked a few things:

  

*         I really like the lather-less shampoo and the conditioner.   They really make my hair feel extra soft and wonderful. Clean, but not squeaky clean. Didn't think I would like that but I really do.

*         Curly meringue is nice. Not too much hold or tackiness but a nice lightweight product. I like the smell of it too.

*         Curly pudding is very nice. I'm not sure how well it will work with my hair as it (if it) changes back to its original level of curly/kinkiness. It provides more curl definition and I like the smell of it as well.

*         The baby buttercreme was nice but nothing to write home about.

*         The rapid recovery treatment was EXCELLENT! Whoo... I can't say enough good things about it other than I really loved it.

That said... a few of the negatives:

*         Miss Jessie's is ridiculously priced. RE-DAYUM-DICULOUS! Ya hear me?? I know that the line just pushed out to Target and I am happy for the two young ladies in this step in their endeavor but on my "breast-cancer-is-my-beyotch-budget" I can't afford to look that cute. Just simply cannot do it. $58 bucks a pop for products is not working for me.

*         The curly meringue and the curly pudding are nice but (for me) they take entirely too long to dry. I knew I was getting in too deep when I purchased a hair dryer just so that I could speed up the styling process. I have this quirky thing about wanting to do my hair every day. I haven't been a part of the once a week, or once every two weeks tribe for many, many years. Honestly, I don't want to go back. I enjoy wetting and/or conditioning and/maybe shampooing my hair daily or at least every other day.

*         Miss Jessie's requires far more work, time and effort than I am willing to give. Don't get me wrong, I enjoyed my curlies and it was an interesting experiment. But Nic is a rock-and-roll sort of girl... I like my hair to be the quickest part of starting my day, not the longest. And I definitely do not like trying to do my hair at night and hoping that it looks presentable in the morning. I don't have time for do-overs if it doesn't.

*         I was disappointed to learn that Miss Jessie's has mineral oil in it. I'm sure that it's in there for production quality or something like that but you would think that if you were mortgaging your first child in order to keep your curly hair looking fly you could AT LEAST get a product that didn't have bad for you ingredients in the list. (shrug) Disappointing for real.

I am almost out of curly pudding and curly meringue. I have been out of baby buttercreme and rapid recovery treatment (I bought the small sample size of both). I have lots of shampoo and conditioner left. After trying so many items in the product line, I can say that I probably won't bother purchasing more. Maybe the shampoo and conditioner - but that's only if I can't find something else just as nice but more budget friendly. And assuming that I grow my hair out again.

Surprise!

About a month or so ago, I got totally fed up and chopped off all my hair. So I'm back to wearing my uber-low fade and pretty happy about it. (I was very tearful in the beginning but I've gotten used to the shortness of it) I've been using some ridiculously cheap Am-pro clear gel to help with styling my curlies. Less than $2 per jar. And honestly, I'm cool with the results. (shrug)  Guess I really am not a high-maintenance chick after all.

Love ya Miss Jessie's but you're out of my league.  The next step in the hair chronicles is to find a protein treatment that will help to strengthen and grow my hair. Part of the reason I cut my hair way down was because I was noticing some serious thinning in a few spots. People around me seemed to think I was seeing things but I thought I saw bald spots emerging and there was no way that I was going to sport cute curlies speckled with bald spots. Nope. I may be cheap but I'm still vain.

Will let you know how it goes with the protein treatment and what I decide to use. Meanwhile, I can check Miss Jessie's off my list and go purchase more clear gel.

Cancer in 2030

Reuters reports ...

U.N. report: 13 million around world will die each year, twice those in 2008

LONDON - Cancer will kill more than 13.2 million people a year by 2030, almost double the number who died from the disease in 2008, the United Nations' cancer research agency said on Tuesday.

The International Agency for Research on Cancer (IARC) also said that almost 21.4 million new cases of the disease will be diagnosed annually in 2030.

Launching a new database on global incidence of cancer in 2008, the latest year for which figures are available, the IARC said the burden of cancer was shifting from wealthier to poorer nations.

For the complete story ... follow this link ... http://www.msnbc.msn.com/id/37451524/#storyContinued

This and That

Yesterday was a busy day. I visited C from the Second Cup Coffee group. She hasn’t been well enough to join us so lately and I thought I’d stop by her place and visit. She has a lovely back yard on a ravine. There we had tea and cookies and enjoyed all the birds using the bird bath. Hope you can soon join us at Second Cup C.

Then I spent the remainder of the day with family. My sister is visiting from the States and my niece and nephew and their newest little one are in from BC. Wow the family sure is getting big.

It must have been a bit too exciting of day for me because my sleep last night wasn’t great. I woke up numerous times. I had some breakfast and watched a bit of TV and still felt ‘grumpy’.

So I decided to take a couple of Tylenol and hopped back in bed. Two hours later, I woke up feeling so much better; I can’t even tell ya. Then D was staring at the ceiling and said, “That’s good you had a great sleep because you were snoring so loud, I thought I’d find cracks in the ceiling.” Too Funny!

Anyways, I’m feeling good and ready to face the day.

Lymphedema Update

Yesterday I had an appointment with the physiotherapist at the clinic. As we walked over to the examination cubicle, she asked me how I was doing. I told her I was feeling ok but my back and shoulders were really achy. I told her that sometimes I’d wake up in the night all sore and uncomfortable. As I was talking to her, I felt a little embarrassed because I know that if I was vigilant on doing my stretches and my exercises, I probably wouldn’t be having these problems.

Anyways, she was very kind to me. She said the best thing you could do is stop sitting around and start moving … something as simple as walking could do it. She said while I’m walking, I should swing my arms too. 

She said … unfortunately, most of us have a poor sitting posture, allowing our shoulders to fall forward. This stretches out the shoulder muscles at the back and weakens the front shoulder muscles. This causes the aches. Well, I’ve decided to get moving and walk more.

Once we finished up with that, we got on to the business of measuring up my arm to see if the lymphedema is worse or better than my last visit in January. Well my measurements were up a bit but no biggie. I’m on chemo and we decided that the fluid is going to fluctuate because of that. 

My existing sleeve and glove are all stretched out, time for a new set … my my, does the time go by fast or what?

Struggling with anger... still

The emotional rollercoaster simply does not stop. No matter how hard or how often I try to will it away, pray it away, wish it away… these strong emotions continue to rush over me and overtake me.

I am angry. Still.

And I’m disappointed in myself for feeling this way. But honestly, I am so very angry today. I just spent a few moments on a website for young survivors of breast cancer and found myself stuck on the survivor stories. I was considering submitting my story for the website but then, I just got stuck. I didn’t even read any of the entries. I just kept scrolling through all the names and reading the introductory blurbs… my name is… I was only… I was a newlywed… I was a new mom… the doctor told me it was just a cyst… the doctor told me I was too young for breast cancer... and on, and on.

The roll call of names really got to me. I couldn’t tell by the names what race or ethnicity the women were. I had no idea whether they were straight or lesbian, married or single, mothers or not… just women. Young women like myself who had their entire world shaken upside down and changed forever. Women who were diagnosed late stage like me – stage 3 or stage 4. Women who were diagnosed early – stages 0 – 2. Only two things in common, that they are women and that they were young (under 40) when diagnosed.

When I am walking down the street, I watch the people that I pass by and I play guessing games with myself trying to figure out their story. Where are they going? What are they planning to do after work? Do they have a family? Etc. Rarely do I look at another young woman and guess that she may be dealing with breast cancer. But of course, it is possible. I am a witness to that.

I’ve been reading about a theory that says that people who don’t express or release their emotional baggage are more likely to develop cancer. http://www.itmonline.org/arts/cancemo.htm   I’ve also been reading about the ways that stress can contribute to breast cancer – primarily by weakening your immune system which limits the body’s ability to fight and/or kill cancer cells when they start to form. And the third reading that I’ve done links toxins in our environment (food, cosmetics, plastics, etc.) to increasing the estrogen in our bodies which can lead to many types of breast cancer. (Many kinds of breast cancer are estrogen driven – like mine)

It is enough to make you want to scream.

I live in a world that has tried to diminish me in every way since I was born because I am a black woman. I live in a world that has taught me to be seen more often than I am heard – primarily because I am a black woman. I live in a world where my sexuality has been twisted and contorted to suit other people’s fantasies and illusions, again primarily because I am a black woman. I keep saying black woman together – but really it should be separate. Because I am black – I suffer from the prejudices of many people all the time. Because I am a woman – I suffer from people’s ideas and fantasies of who I am, what I am capable of and where I should go with my life.

Learning to adapt yourself to handle these ridiculous burdens that other people place on your doorstep is stressful. But also knowing that you cannot afford to blow up, lose your cool or otherwise be undignified in your response and handling of said stress causes you to suppress a lot of your emotions. So I’m stressed just because. And I suppress my emotions as a defense mechanism to survive this mad world. On top of all that, the food I eat, the beverages I drink, the cosmetics I put on my skin to make myself more attractive – and less likely to receive negative feedback from the world – could also be serving to ultimately kill me?

Seriously? This is just too much. So, today I am angry. And right now… I’m releasing this anger into the world for it to deal with it today. I simply have no more room inside of me to keep stuffing this anger down.

I can’t do it.

Lymphedema is so very un-SEXY

Been feeling a little lousy lately. Headaches, nausea, a little vomiting (nothing major) and so on. General yuckiness I guess is the best way to describe it. Thought that maybe the heat of North Carolina was getting to me while I was travelling this past weekend. Then I thought that maybe I was dehydrated. But resting in the cool didn’t help much and neither did drinking lots of fluid. I still felt sort of lowgrade yuck.

 

Today I had two back-to-back appointments – first to see the plastic surgeon so she could remove some stitches and then immediately after I met with the physical therapist so that she could massage my arm and finally wrap it (my bandages arrived last week).

 

I was annoyed to see that my blood pressure is still elevated… it hasn’t gone down yet and we’re going on three weeks of these high numbers. I’m getting a little worried. But, I didn’t press the issue because there wasn’t a point of discussing it with the plastic surgeon. High blood pressure isn’t her area of expertise. She didn’t really have any smart remarks but then, neither did I. And I think that my quietness surprised her. She noticed some redness on my new breast and thought that maybe I picked up an infection or something – which would explain my general feeling of ick. She wrote me a prescription for two different types of antibiotics and told me to follow up in a week.

 

Sigh. I am tired of seeing her face actually.

 

As for physical therapy… I really had hoped that when this lady said that I would have to wear a bandage wrap that somehow it would be slick. Maybe not sexy exactly but still not crazy looking. Well… I have on a pretty cute new sundress. Was looking forward to taking myself out to dinner tonight to try a new restaurant that I’ve been hearing fabulous things about. Let’s just say, I cancelled my reservations because I LOOK CRAZY!

 

The bandages go all the way up to my freaking armpit! Its horrible to look at and difficult to navigate with. I came to work with a blazer over my dress. You know, trying to keep things professional. But I can’t get my arm into the sleeve of my jacket because its all wrapped up like the mummy. (sigh)

 

Oh well. Guess I will check out Founding Farmers some other time… I still feel icky and I’m ready for bed. I had actually hoped to work late tonight but I don’t see that in my future.

 

Have I told you lately that I can’t stand breast cancer? This isht is for the doggone birds.

Canadian Cancer Society "Gift of Hope" 7 Minute Video

Canadian Cancer Society "Gift of Hope" from Redpilot Media on Vimeo.

Official - feet are no longer icebergs

Last night in bed, D and I were talking about how my feet are no longer icebergs like they were most of 2009. That Taxotere did a real number on me … me and my feet were always cold. At night I used to snuggle up to D and I’m sure he’d get a cold chill up his spine every time I snuck up with my feet. Often I’d go to bed with a heating pad at my feet and it would still take hours to warm those babies up.

Now I’m finding my feet are hot and I’m looking to cool them down … especially now that summer is here. At night, I’m always kicking the covers off to cool down. So here I go … different chemo different side effects.

One of the other things with Taxotere is that it was really hard on my immune system and somewhere along the way, I picked up a planters wart. I was disappointed to say the least. Anyways, because I was on active treatment, we couldn’t treat it. To my surprise, after my switch to Xeloda, the wart disappeared. Don’t know exactly when but along the way, the Xeloda burnt that baby right out of its den… horray!….a win for me.

What will you do with the time you have left?

The topic of the eulogy of my cousin's funeral the other day was... "what will you do with the time you have left?"  Although the minister didn't go where I thought she would with the topic, the question has stuck with me all weekend.

What will I do with the time I have left?

Since none of us knows how much time we have left -- no matter what the doctors may tell you, or what someone may have prophecied over your life -- you have to live consciously with the notion that every moment is very precious.

On Thursday, I attended my cousin Scharleen's funeral (yes, I've been spelling her name wrong all over the internet for the past couple of weeks) and on Saturday I attended the funeral of my cousin's grandmother. Both were dynamic and wonderful women. Both were well-loved and admired within their communities and their circles for being giving souls. And I realized at Grandma Baggett's funeral that they both taught me the same lesson -- just in different ways.

Its all about love. Loving yourself. Loving others. And BEING yourself. That last part is what is sticking with me the most about their lives. My cousin was never apologetic about who she was. Grandma Baggett never met a person that she couldn't love and become like family with. Have you ever met someone that the moment you met them, its as though they have always been a part of your life? Grandma Baggett was that way. Scharleen had a personality that was bigger than life sometimes. Once you met her, you would always remember her.

Both ladies taught me with their lives that being truly yourself... is the most freeing and wonderful gift you can give to the world. Even if someone doesn't immediately recognize that you're giving them a gift -- the gift of being just as free as they are -- the gift still has potency.

I've been fighting with anxiety for a couple of months now. I've been fighting against accepting that I am not doing the things that actually bring me joy. I have been tinkering around and pretending that not writing, not speaking, not pushing myself to be that entity that I feel I am way down deep inside is acceptable. I've been living a fake life, a facade. And the incongruity and lack of harmony is tearing me apart.

In fairness to myself, I know why I shelved those dreams and decided to live a different way. Part of it is fear of the unknown. Part of it is trying to be a grown-up. (I have this strange idea that grown-ups aren't supposed to be happy, living and doing things that make them smile. But being a grown-up means that you work a job you hate, and you deny yourself fun stuff because its too childlike.)  Part of it is an acknowledgement that I don't have all of the skills that I need in order to really shine as a star on my own.

Someone asked me recently (through formspring.me) who inspired me. And I replied that I draw a lot of inspiration from people who are living their dreams. Whether or not I agree or like what they do... the fact that they shrugged off an ordinary life to reach for the impossible and found success and joy with it makes me so giddy inside. I can't explain it. When I watch someone like Janet Jackson or even Beyonce perform (and I am not a fan of hers, don't stone me)... its like breathing pure oxygen. Not because what they are doing is so fabulous or that I want to do that specifically -- because Lord knows I can't dance or sing and would not want to make a living trying to do so -- but because you can FEEL their joy, their connectedness to everything when they are in their zone.

I feel that way when I'm writing... I know I've said that (or something similar) a million times but I can't stop feeling this. When I'm writing, time passes, life could stand still and I would not really realize it. But the downside is that I don't have the business skills (marketing, accounting, etc.) that are necessary to move writing from a happy hobby to a profitable method of living.

Not sure why I'm sharing this today -- really wasn't where I wanted this post to go actually -- but looking at Scharleen and Grandma Baggett in their caskets this weekend reminded me that time doesn't wait for any of us. I don't know why I need the constant reminder but it seems that I do. The question... what will I do with the time I have left is ringing in my ears.

Those of you who have moved from an ordinary life to the life of your dreams... how did you make the leap? I think I'm looking for permission to walk away from being a grown-up and just be a happy kid... reaching for goals that are bigger than I am, that I have no way of seeing in advance how they will work out but just knowing that they will.

You want to know what some of my dreams are? To write a book that touches millions of lives in a good way. MILLIONS. To write (or contribute) a screenplay that reaches and touches MILLIONS of people. To be a speaker that people want to hear, want to see... and to have words to share that help people find their way to their own center of joy. Just to connect with people... and leave them better than before we interacted. Is it possible? Sure. I truly believe that each of those dreams are attainable goals. I just don't know how to get there.

But I have been reminded (again) that breast cancer doesn't have to be the end of my story. And that the life I really want -- not this boring "I'm a grown-up" life -- is out there. Its out there.

What I don't want... is to waste another minute of this life.

Day One After Chemo

Yesterday afternoon I threw a blanket under a shade tree and laid down. Then I just closed my eyes and just enjoyed what nature had to offer … a nice breeze, baby and momma birds chirping, leaves rustling, some dogs barking in the distance, wow this is what I needed. It was so nice our dog Daisy joined me and stood guard.

After about an hour or so, I made my way back inside … had some supper, some tv and off to bed at around 8:30. As D was tucking me in, I asked him to open the window just a crack so I could get some of that fresh air going past my face. Before you knew it, I was sleeping like a baby.

I woke up this morning with a headache; par for the course. So I grabbed the Tylenol and decided to quit being a martyr.

I’m a bit down on energy but feeling pretty good overall.

Chemo Day

I just got back from my Vinorelbine chemo. Normally my appointment takes just over an hour but today it was two hours. The nurses were busy with someone who was having an allergic reaction to their chemo, so everything got backed up a bit. They kept apologizing for the wait … I said no troubles … I would want the same attention if it were me. Besides, it gave me a chance to make small talk with the neighbors.

Once the nurse started my infusion, it didn’t take long for me to feel nauseous, way more than last week. As it was all going into me, I could really taste and feel the chemo and the saline flush. Yik! And on top of that, my nose was really sensitive to all the medical smells. Don’t know what was going on with me today but boy o boy was I glad to get outta there.

It’s sunny and warm here and my next move is to throw a blanket under a shade tree in the back yard and lay down. I need some of nature’s good healing

Blood Test for Chemo

This morning I was at the clinic getting my blood drawn and tested in anticipation of chemo tomorrow. I didn’t see the Onc … just the nurse who went over my blood work with me. My white cell count has recovered to 2.5 and that’s really good so chemo is a go tomorrow.

The nurse and I discussed my schedule. No chemo next week because it’s week three of my cycle and a no visit the following week because of Canada Day falling on my chemo day.

So I get a two-week break. I’m not crazy about skipping the chemo on the second week because I’ve skipped so many lately because of my PICC line infection. 

Otherwise I’m feeling really good on Round One and that’s great.

These Boots Are Made For Walking on Women's Cancers

Drop Everything and Fight Cancers Below the Belt

As taken off their website ...

Join Alberta Cancer Foundation’s Underwear Affair® presented by Mark’s Work Wearhouse and help uncover the cure for underfunded below-the-waist cancers like prostate, ovarian, and colorectal. On June 19, 2010, run the competitive 10K or walk the fun 5K and show Edmonton that there’s absolutely no shame in bringing a little awareness to down there-ness.

The fun continues even after you cross the Finish Line with the EXPOsed After Party! Grab a well deserved drink, strut your stuff in the legendary costume contest, and dance the night away with your fellow participants!

It’s time to hit below-the waist cancers where it hurts. Register today!

What have I learned and what encouragement can I provide?

Two requests came my way over the past few days and I haven’t been able to adequately respond to either. The first was a request for me to enter an essay that covered what I’ve learned from my breast cancer journey. The second was a request to reach out to a newly diagnosed woman and give her words of encouragement for her upcoming journey.

 

In the situation of the first, it is my own fault. (shrug) I sent a comment/reply to a blog that I read regularly about breast cancer because I noticed that all of her entries to a particular post were from white women. Not that there is anything wrong with that. But the writer was compiling a list of top 10 lessons learned from breast cancer and it struck me as rather odd that no women of color had learned anything during their journey. Fortunately for me the writer was a real dear and she responded to my query and then asked me to submit an entry (and a picture) and to share my lesson(s) with the world. (that’s what I get for opening my big mouth, I suppose)

 

I have no idea what I will say but I will respond to her today because I need to. And I will pass along the information so that other women of color can respond as well (if they want to). But I need to respond to what I’ve learned as much as I need to offer encouragement to the woman who is just starting this journey… because I need to understand fully what I know now.

 

Some days, I am unsure if I’ve learned anything and unsure whether I have gained anything at all. I know that I have learned things – I see that in my responses to people when they ask me direct and pointed questions about different things regarding handling breast cancer treatment. I am often surprised by how much I’ve learned and how much I know. But when I sit down to just think about it – I simply can’t remember too much of it. Its too much.

 

When I started this journey, I was frustrated that there wasn’t one great book that would tell me all that I needed to know to get through my cancer treatment. I was upset that there weren’t more women of color publicly talking about their breast cancer journey and offering hope to those who continue to follow down that path. I was sad that I couldn’t relate to the permanently perky women I saw in various places who made it seem so easy to get through. While I didn’t have a map of the new land I was entering, I was pretty sure that it wasn’t going to be an easy trek and I wished and longed for someone who could have helped me along the way. Someone I could relate to. Someone who looked like me, or talked like me… or something. But there weren’t too many role models out there for me.

 

Now, I try to be a bit of a guide – though probably not the best guide that’s out there – for sisters who are coming behind me. primarily because I know that they are coming. Until there is a cure, they are going to keep coming and keep coming and keep coming. And I feel compelled to let them know that you don’t have to be perky and chipper every day and some days it will take all of your energy just to stay awake or just to keep your anger in check. Some days, it will just be difficult being. And that’s okay.

 

I’m getting close to the last straw. (laughs)  Meaning that I’ve learned how to navigate the diagnosis, I’ve learned how to give myself space to weep and to cry. I’ve learned that it is okay to say no, or not now and not feel badly about it. Basically, I’ve learned that I have to take care of myself.

 

I guess that is what I will write the essay about and what I will share with my newest pink ribbon sister. Take care of yourself.

 

 

 

Staying Busy

My chemo side effects so far have been minimal. Every morning I wake up and wonder when the headaches will kick in because with my first infusion of Vinorelbine … I had headaches for about four days straight … but not this time. Yippy!

I find that the chemo does make me a bit agitated so I try to fill my day with stuff to do because when I’m just sitting around, my mind wonders to the unpleasant thoughts of my future with cancer. 

Anyways, last Saturday I went for breakfast with my mom and sister. After that I spent some really nice time with my friend T from the knitting group … and for the afternoon, D and I found a nice outdoor coffee shop where we spent our time just sitting enjoying the sights and sounds of the downtown. For the evening we took a nice long walk in the nearby park. Later when my head hit the pillow it was lites out, I slept like a baby.

Yesterday, we drove south an hour and a half and spent the day with my brother and his wife. What a great time just sitting around and talking. It was another full day and another great night’s sleep.

The guilt of surviving and knowing that you are blessed

I mentioned that one of my dear cousins passed away a few days ago. She died from complications after having a stroke. She was in a coma for a week or two, and there were indications that she may pull through. But ultimately, she passed away.

Naturally, I feel sad and my heart is heavy because of the loss and because I know that the pain that her child, her parents and her siblings feel -- along with the rest of the family -- will resonate for some time. She was a dynamic member of my family and her presence will surely be missed.

My cousin was only a few years older than I was and my father watched her grow up -- he lived with her family for a time when he first moved to this area. So her death is hitting him pretty hard. I think that it is hitting him extra hard because she fell ill almost two years to the day that he had his brain aneurysm. And while he survived and is doing well... she did not. It is hard to reconcile something like that.

There is a bit of guilt and some pressure when you know that you have survived something (and illness or an accident) that others did not. Since my diagnosis with breast cancer two years ago, I have lost a few friends and acquaintances. Each time it is a difficult matter to deal with because you wonder why them and why not me? You wonder whether their passing is a sign that your time is still borrowed. And if you're like me... you really wonder, why am I so blessed?

While I know logically that grace is not earned but is given by God... everytime I hear of someone else's death I am slowed down with guilt. Charlene and I were not fighting the same battles with our health. Her issue had to do with high blood pressure, mine was cancer. Yet at some point, we both were in dire straits. My cousin had been fighting to get her blood pressure under control for some time and although her doctors continued to try various medications, nothing seemed to do the trick. Meanwhile, I was diagnosed late with my cancer but still early enough that surgery and treatment could take care of it. And I was healthy enough to withstand the hardest treatment that my oncologist could give me to ensure that I made it through. Everyone just isn't that fortunate.

As I sit here thinking about my cousin, my father, my aunt who died from breast cancer and my aunt who has survived her breast cancer I just feel overwhelmed. There is so much out there in the world... I feel an obligation to myself to do whatever it takes to be happy and to live my life well. I feel an obligation to my family and my friends to do whatever I can do to take care of my health and not take my body for granted. I don't know whether my cancer will come back. I know people who have fought cancer multiple times and defeated it each time it showed up. I know people who have struggled with hypertension and turned it around... So I know that it is possible to come close to the edge and then to pull it together. I also belive that His grace is sufficient and that if He wants me here, then here I will be.

This is one of those posts that won't wrap up neatly. The thought for the day is that I am blessed to be here. And I understand that with that blessing comes a responsibility. I don't particularly like exercising but since my blood pressure has been elevated for the past couple of weeks, and my lymphedema has been acting up as well... I have no choice but to engage in some regular physical activity and to alter my diet.

I have been living like a person on borrowed time -- treating myself with permission to basically do whatever I want to do because I deserve it. Now, I have to switch gears and treat myself, not as though I am dying and trying to savor the last moments, but as though I plan to live forever and need to do what it takes to ensure that the years ahead are as good as I can make them.

I've been contemplating making some major dietary changes -- giving up sugar and white flour and possibly restricting my meat intake. I haven't made any solid decisions or plans but I should have things ready to roll out in a few days/weeks. My goals are simple, to lose a few pounds and to lower my blood pressure naturally. To become healthier, eat less junk while still enjoying good food and fun times. Its possible and honestly, it simply has to be done.

Reminder: Make Note of Your Breasts

Ladies…. here is a short advert on some not so subtle ways of keeping your breasts more in mind … ha ha.

New profile...

Well, I just removed my bandages and my binder bra (I'm sure that isn't what its called but that's what it is -- a velcro-closing bra that holds me and my bandages tightly together). I put on one of my lounging cotton bras, the ones that I purchased and wore after my mastectomy and my reconstruction. They aren't the prettiest bras in the world but they are very comfortable because they have no wire in them at all.

I remember when I purchased these after my mastectomy. It was a challenge to find something to wear that was small enough to fit my back size and yet large enough in the cup size to hold my remaining breast. It was an impossible challenge actually so I just bought something that fit my back size and didn't worry much about the cup size.

After I had my reconstruction months later, I pulled these comfortable bras out again to wear. I couldn't wear regular bras because at my size almost all bras have underwire.  Underwire is a no-no after breast surgery. Because of the surgeries, there are areas of my chest/breast area that are numb and the wire in those bras could cause a lot of chafing and or wounding of the sensitive flesh. I would show you pictures of women who ended up with really bad sores after wearing underwire but... yuck. Its gross and I'm sure you get the idea.

These lounging bras have no support though -- that's what the underwire is for and without it, well, there goes the lift that my oversized boobies required. Needless to say, although I wore these bras for months for the comfort, they did NOTHING to make me look good in my clothes. I looked a little crazy (I'll admit it now) because I was lopsided in two ways -- one side was significantly larger than the other and also, one side was lifted higher than the other. Just not so sexy really.

So, like I said... I just pulled out one of these lounging bras since I just removed the binder bra to put on a tshirt and wow.... my profile is just significantly different. I was staring at myself sideways for about 10 minutes. Its amazing over here. I can look down and see my lap. (laughs) I haven't done that in years. The fact that this bra has no support doesn't matter because my boobies are actually perky and have their own lift. Wow.

So check it... I am comfortable. I have on a bra with no underwire. My breasts are lifted and sitting high on my chest. And most importantly, I am comfortable.

I have to get used to this new profile because it is just amazing to me that I look so... proportionate now. Amazing.

I won't say that I'm still completely sold on these new girls... but I will admit that they are putting in some good work right now. The next test will be to see how they look in cleavage showing outfits. :)

Chemo Went Well

I had chemo yesterday. My appointment time was 3:00 pm which is quit late in the day so I decided to fill the morning and early afternoon with lots of fun stuff. Lunch with my good friend Audrey and short visit with my good friend C from the Second Cup coffee group.

By the time I got to the clinic I was feeling really good … ready to get the infusion going. Everything progressed perfectly so I was outta there in about an hour.

I came home, had supper. I felt some very mild nausea and a bit warm and agitated so I went down to the basement where I did some knitting and cooled off. Came upstairs and watched just a bit of TV and off to bed I went. This morning I woke up feeling pretty good. I’m very excited about that.

Shout Out To The Ride to Conquer Cancer

As per their website ...

When: June 26-27, 2010

Where: Calgary

Distance / Time: Two days of biking, one night of camping

Event / Contact Info: 888-624-BIKE(2453); www.conquercancer.ca

What is The Ride to Conquer Cancer?

During one epic weekend, June 26-27, 2010, thousands of men and women will rally in Calgary to cycle along the Majestic Rockies before returning to Calgary in two days to be a part of history in the making.

The money raised will support breakthrough research and discovery of new cancer therapies which will benefit treatment at the Tom Baker Cancer Centre and the Cross Cancer Institute. 

Someone to hold my hand... during times like this

I often think about being married versus being single. Partially because it seems to be the hottest media topic around now (why black women are not getting married)… and partially because of the cancer. To tell the truth, marriage frightens me. I take the responsibility of marriage very seriously and it can be an overwhelming thought sometimes. I believe that marriage can be fun and an adventure, with the right partner. I think that if you select the right mate you can grow in ways you couldn’t imagine as a single person and your life (ultimately) could be made all the sweeter because you decided to join together with someone and create a new family unit. Those are the good things that I think about marriage. There are some downsides too. But I won’t go into that today.

 

I think about marriage lately because I think about my desire to have kids. I have a difficult time reconciling my desire to be a mother with choosing to undergo fertility treatments alone. I love kids but I don’t love the notion of raising them alone.

 

I really think about marriage on days like today. Yesterday one of my favorite cousins passed away. Charlene was a sparkling ray of sunshine all of her life. She was bubbly and upbeat and smart. So much fun to be around. She was a little older than me, so I remember looking up to her and her sister and brother to learn the latest dance moves or the hottest new music. They kept a nerdy little girl pretty hip and connected. Charlene never was the one to ask me why I had never married or had kids. If she wondered about it, she didn’t share that curiosity with me. She had her son at a later age so I’m guessing that she understood that being a single girl in DC was a lot of fun. And there was no reason to change that fun until I was ready to.

 

Charlene was light. You couldn’t help but enjoy yourself with her. She wouldn’t really allow anything else. (laughs) That was my cousin. Just a beautiful, beautiful woman. And now she’s gone.

 

On the same day that Charlene passed, one of my father’s aunts passed too. I have a few vague memories of Aunt Clara but I know her daughter well. Another nice cousin of mine.

 

On a day like today… when my heart is starting to really feel heavy with grief… the thought of marriage sounds nice. The thought of someone there to hold my hand sounds heavenly. My chest is still bandaged up from the surgery last week. Though I feel fine enough to come to work, I am acutely aware that my body is healing and needs to rest as much as I allow it. I’m split-brained right now… worrying a little about my healing progress from my surgery and beginning to grieve my cousin’s passing.

 

I think of selecting the right man to marry in thoughts of moments like this. On the list of the wonderful traits you’d like your future husband to have do you also have… will be there to hold my hand through times of trouble? It’s always near the top of my list.

 

Sigh. I’m not married. I don’t have a boyfriend either. But I do have good friends who would probably hold my hand this weekend. I’m going to need that sort of connectedness to someone I am sure thinks of me in a loving and wholesome way.

Blood Draw and Onc Visit

I just got back from the clinic and had my blood drawn. The nurse poked me twice before she got blood and off I went.

I stopped for coffee to burn up some time before my Onc appointment. Then the nurse came in and had a look at my arm and PICC line. Still a bit red from the infection but looks good otherwise. She said my blood work was good for chemo tomorrow. My neutrophils count - white blood cells - is at 2.1. That’s really good news. I asked what the minimum could be and the nurse said 1.5 for a Vinorelbine infusion. Apparently that number varies with the type of chemo. Who knew that?

I then saw my Onc. He also said we’ll go with chemo tomorrow and Friday next week as well and then one week off and then repeat that cycle. After eight weeks I’ll have another CT scan to see how my liver tumors are coming along.

Spirit of Service 2010

This event is an opportunity to learn how you can make a commitment to your community. The Spirit of Service is free for individuals and for organizations. If you are an organization and would like to reserve a table, or for more information, please contact OYFP.

At this free networking event INDIVIDUALS will:
· Discover opportunities for community involvement in Boston.
· Meet other individuals who embody the Spirit of Service.
· Learn what it's like to join executive boards, advisory boards and young professional committees.
· Join, encourage, and promote an era of responsibility!

At this free networking event ORGANIZATIONS will:
· Promote their cause and upcoming volunteer opportunities.
· Recruit young professionals for their advisory boards & various committees.
· Join, encourage, and promote an era of responsibility.

Event Website: http://oyfp.org/BOS/events/view/189/
Event 2009 Website: http://www.oyfp.org/BOS/events/view/168/
Venue Website: http://thegrandcanalboston.com/
Twitter: @OYFPboston
Hashtag: #SoS2

RSVP & Questions: John.Ryan (at) oyfp.org

The Details

Date: Wednesday, July 14th
Time: 6:00pm - 9:00pm
Location: The Grand Canal patio
57 Canal Street
Boston, MA 02114
*Near The Garden
(617) 523-1112
Partner: Many Boston Nonprofits
Cost: FREE

Yet Another PICC Line Cover

This is my second time having a PICC line and both times bloggers have sent me a link to the site Finding Jenn Project Blog which offers info on how to knit an arm-ling PICC line cover. 

On the weekend I decided to head over to the local craft store where I picked up a 5mm circular knitting needle and a skein of worst yarn to match. Not knowing which size would be best for me; I cast on 52 stitches and knitted the whole thing up only to find it was way too large for my arm. The 9 inch length was ok but the diameter was too large. 

On my second attempt, I decided to cast on 44 stitches. This arm-ling is a much better fit but I’m actually knitting one more … this time 40 stitches and see if that is a better fit. Just for reference, my arm circumference including the bulge of the PICC line is 11.5 inches.

Now I’m just waiting for the weather to improve so I can wear short sleeves and take the arm-ling out for a test drive.

Tying a knot and holding on...

I had a moment today at work where I looked at myself (from outside of myself) and said... "is this ALL you've got?"  I heard myself answer... "I really don't know anymore".

Surgery does something to my spirit. And its not a good thing. I'm anxious before it happens. I spend a week or two worrying and fretting... hoping that I've made the right choice. The day of the surgery, I am a ball of nerves -- high blood pressure, nervous laughter/jokes, and light nausea -- but I eventually calm down and accept that everything will be okay. Once the anesthesiologist (is that what they're called) comes in with the needle... I give it up to God and I get ready for some good sleep.

So far, every time I've gone under I've awakened okay and pretty much in one piece. Okay... so a couple of times I went to sleep and woke up with less than I came into the hospital with -- but that was the plan so, it still wasn't so horrible.

This last procedure went pretty much like all the rest. I was nervous for a week or so before hand. I was scared that I had made a bad choice. I questioned my motives and my strength.

I mean... why couldn't I just live with one new breast that didn't match the other one? In fact, why did I even get a new breast at all? Was that a good move? My stomach is still tight and its been months since my reconstruction. Did I make the right choice? Maybe I should have just stopped at the mastectomy. And then... speaking of mastectomies... why didn't I just remove my other breast at the same time, skip the reconstruction and just be one of those bad azz survivors who lived with their bald chests and scars zig-zagging across their bodies? That could be me, right? Bald head... bald chest... scars hanging out. Who needs curves and breasts? Especially when there is no sensation in them.

Sigh. I know. Its tiresome isn't it? If you think its tiresome to read it, imagine how it feels to bounce these same raggedy questions around in your brain... every day... all the time... every time you have to make a decision. Every time someone at your job looks at you cross-eyed when you say... "I have to go to a doctor's appointment today"... and you read the fatigue on THEIR face. (laughs) Like they could possibly be more tired than you of seeing the inside of hospitals, medical centers, waiting rooms...

I think that's the part that is starting to get to me. Looking at people outside of my circumstances and seeing their fatigue from my issue. I am prone to beating myself up mentally. I've been doing it all my life. My therapist laughs at the way that I always manage to make a situation about how I can make the least amount of impact on someone else. She laughs but then she helps me through it. (she's good like that)  The truth is that I believe that I am the laziest person on earth. No matter how hard I work, I always think I could have pushed harder. No matter how tired I am, I always think I should stay up a little longer and do a little more. When I miss a goal or a deadline, I fret. Sometimes I cry. But no matter what, I'm going to spend a little time feeling extra bad about it.

And that brings me to today. Long story short, I found myself doing a task that was requested of me and it was annoying. Annoying because it was taking so long. I couldn't make it go any faster -- the equipment will only do what it will do. After two hours, I was frustrated. Three hours, I was getting angry. Four hours, I was pissed. By the fifth hour, I was sad and mad and wondering where was the kernel of joy in this moment. I simply couldn't find it.

I've spent two years trying to get back to normal. And now that I am technically normal (or almost normal anyway)... My life seems so shallow and stupid and just wrong. I am always in awe of people who live selfless lives. People who could spend their time working to make lots of money but who choose instead to do other things that help people but don't earn them a lot of money. I never thought I could be that person. I love helping people. I love the feeling I get when I feel that I've been of good use to someone who will appreciate my efforts and who will likely pass along my good work to someone else. I've always felt that life was really lived in those small hand to hand moments of life. BUT... Nicole likes nice things. Always has. And I was taught that in order to have nice things, you have to earn money to pay for them. So I work. And I pay my own way. I buy what I want and what I can afford. If I can't afford it then I work on not wanting it. (laughs) But I still envy those people who live a life beyond the confines of making enough money... (there's never enough money, no matter what you have).

I don't know how to do that. And now that I am a cancer survivor, my ability to just pick up and roll out when the urge hits is stunted. I have to be responsible. I have to remember that a recurrence is possible and if I am caught without health insurance or an ability to pay for my treatment... I will face bankruptcy trying to save my life again... or sure death because I can't. The thought that my life has now become this balancing act of maintaining the status quo so that I don't end up destitute and dying on the street... makes me want to cry.

You see, I'm not built that way. I am just spoiled and silly enough to think that life should have lots of moments of joy and laughter and satisfaction in it. I believe that I should be able to help people in their lives in some way... and still be able to take myself out to eat a few times a week.

I'm rambling and I know it -- blame it on the pills, I had a bunch to take tonight -- but all of this is really to say... I'm not happy with my life. The places where I find joy and smiles... seem to be losing their luster. I have to fix that before I snap. I have to be strategic about my life now... something that isn't my strong suit. But I'm slipping... and I know it. So I've just tied a knot in the rope... and I'm holding on. Praying for some answers to this feeling.

Metastatic Support Online & Groups

As taken off the Canadian Breast Cancer Network site ...

• AdvancedBC.org
• Breast Cancer Network of Strength
• CLUB-METS-BC
• Our Corner Message Board
• Recurrence and Metastatic Disease
• Sharsheret
• The Breast Expressive Supportive Therapy (BEST) Group (Calgary, AB)
• Wellspring Metastatic Cancer Support Group - Halton-Peel
• Wellspring Metastatic Cancer Support Group - Niagara
• Wellspring Metastatic Cancer Support Group - Odette House, Toronto
• Wellspring Metastatic Cancer Support Group - Sunnybrook, Toronto
• Women with Advanced/Metastatic Breast Cancer - Winnipeg
• Women With Metastatic Cancer Support Group - Vancouver
• Young Survival Coalition

Chemo for H and my Camera

H from the Second Cup group was having chemo today and I stopped by the clinic to pick up a get better card from her for another gal C from the coffee group. I decided to bring my camera and offered to take a picture of H as she was getting her infusion. She thought that was a great idea. She thought she’d like to send the picture to her adult children and maybe put them more at ease with her getting chemo. 

I think when most people hear the words chemotherapy and radiation … they have a different image in their head than what it really is. So when I took the first picture, H said … hey, you didn’t give me a chance to smile … now there’s a great attitude.

C has been in and out of the hospital over the past few weeks. I’m going to stop by her house and lift her spirits a bit with the card. C we miss you at coffee and look forward to seeing you there soon.

Hmm... am I being superwoman right now?

I have a confession. I hate-loathe-detest the stereotype of black women (or any woman really) as a “superwoman”. It irks me to no living end. Seriously. It has to be the most ridiculous and rude vision of a person that you can have. Superwoman has to be able to do it all, with a smile and wink… all while keeping it sexy and funny. Providing giggles and jokes for her friends and her husband (because of course she HAS a man, right). Going above and beyond every day for the “man” – unless she’s uber-superwoman, then she runs her own multi-million dollar business. She handles kids with ease, she always looks flawless and well… there isn’t anything that she can’t save, fix or prepare.

 

She’s superwoman. Well, let me tell you. Her name ain’t Nicole. I am NOT superwoman. For anybody. Not even myself.

 

I had a conversation the other day with a friend and he mentioned something that sort of pricked me. I tried to shake it off but it unnerved me for a few days. So, I did what I tend to do… I thought about it. And I thought about it for a long time. And then I put it away.

 

Friday, I had a breast reduction procedure and some minor tweaking on my other breast. The procedure was out-patient and although my surgeon thought that I would be down for about 2-3 weeks, I felt so fine this weekend that I decided to come to work today. Yes. Close your mouth. Superwoman is at work today.

 

Grr. I don’t know why I came. Well, actually I do know why I came – but I’m annoyed that I’m here. Primarily because I feel useless. While I feel fine considering that I was in surgery for 3 hours on Friday, I am stiff. I’m not trying to pop any stitches or anything like that. I’m just trying to do what I said I would do. I’ve gotten a little tired of people expecting me to do this or that and when I can’t, they are disappointed. Really tired of that feeling. So, I’m here. With my fake cape and a fake-r smile… I’m here.

 

One of my colleagues gave me a stern talking to about pushing too fast, trying to do too much. And I heard her but now I’m wondering whether I’m doing just what I loathe watching other women do… putting everyone else before themselves.

 

The comment that my friend made the other day that left me feeling a little strange was really innocuous. He told me that I wasn’t smiling and joking as much as I used to. He had his theories about why I was different and of course they were totally different from what was really going on in my head. But I found myself annoyed that I didn’t have the room to have more than one mood. I know he had no clue that his little sentence sent me into my head so deeply… but it did. I tossed it around my brain for days and finally just put it aside last night.

 

It is frustrating sometimes feeling like you have to keep up appearances for other people so that their worlds make sense. All I can say is that I’m trying. Some days I’m better than others. Today, I’m feeling fine and I’m at work. Tomorrow, I plan to be here too. I don’t imagine that I’ll be doing too much hanging out with my buddies over the weekend or anything. But I can manage to sit upright for a few hours and smile and pretend that this 8 hours of my life is the most important thing that is going on in my head. Until I get a chance to lay down and think about all the other things that worry me about my life.

 

If you bump into superwoman… do me a favor… shank her with some kryptonite. I need a new hero.