CT Scan Today

I go back to the clinic today for my CT scan. I won’t get the results until my next oncologist visit in about three weeks. I’m not anxious enough to go and get them earlier.

On my last visit with the oncologist on Monday, I asked about H1N1 shots once again. This time she had some information. This year for the first time, the clinic will be offering free shots to the cancer patients.

Her first statement to me was that H1N1 could kill me. I was a bit shocked at what she said ... like I thought; did she really just say that to me? It was a bit of a reality check.

We then discussed the H1N1 shot. How the shot works ... a person needs 10 days for the vaccine to become effective. In my particular situation, because I’m on chemo, I can only get the shot after my blood work shows I’ve recovered from the last chemo treatment.

The big issue is that there isn’t 10 days between the blood work and the next chemo treatment. I get the blood work one day and chemo the next. If I get the shot and chemo the next day, the H1N1 vaccination is destroyed in my body by the chemo. It would not have time to immunize me properly and therefore making the vaccination ineffective.

My doctor does not recommend I delay chemo for the H1N1 flu shot because of the risk of my cancer growing. I was on the fence about getting the H1N1 shot and leaning to not getting it … so I guess that solves my problem … no flu shots for me.

Chemo Today

I just got back from my chemo treatment and to be honest I feel pretty good ... just a bit weaker. Things went really well. I was in a room with two other beds. One person slept through his treatment but the lady next door and I chatted a bit. She was diagnosed at the age of 49 with leukemia. That was 30 years ago. She seemed pretty spunky as she was in Vegas just a couple of months ago. More recently she has needed regular blood transfusions which is why she was there today.

Instead of watching movies on my portable DVD player, I read magazines given to me by some friends. After I was done with them, I left them at the clinic for someone else to enjoy.

Well I still have some reading to do for my class tonight so I best get after it. I had far too much fun reading my gossip mags instead of my school stuff.

So, more than a year later...what is my most important lesson?

I receive a lot of email about breast cancer. Back in the "early days" I signed up for just about every newsletter and blog that I could find about the subject. I needed information and I needed a lot of it. I needed to feel like I was making the right decisions and doing the right things. In all honestly, I don't read most of it anymore. Unless something is pressing on my mind, I try my best not to overload myself on all things breast cancer. But every now and then a subject heading grabs my attention before I delete the message. 

One of the newsletters I received about a month ago was an announcement about a writing contest for a story about the most important breast cancer lesson I've learned. Initially, I thought it was a grand idea and planned to submit a brief response. As time went on, I actually forgot about the contest and by the time I remembered, the deadline was just about here. Well, the deadline has come and gone and an extention has come out...but until this morning, I just wasn't sure that I really had anything to say.

There is so much that I've learned and I'm not actually sure that all the things I've taken away from this journey so far have been good lessons. Like...I really am working on believing that a relationship can be sustained throughout this sort of stress. It didn't happen for me. And I know a lot of other people whose relationships did not make it through breast cancer treatments. But then, I think about husbands like JG who are doing all that they can to support their wives through this process and I try to un-learn my belief that its not possible. And Fran's husband, who was by her side every step of the way. I know that there are guys who can deal, relationships that will survive this sort of pressure and that makes it easier for me to believe that I still may find someone to love after all.

I've learned good things... that my family really loves me, that my mother is spectacular (even when she's cranky or I'm cranky), that I don't have to try to be superwoman all the time. I've learned a lot about myself, about family and friends, about expectations, disappointments and the medical system. I've learned a lot about health insurance and about my own resilience. But this morning, I read a painful email from a sister I have yet to meet who was recently diagnosed with breast cancer. She is related to a friend and former colleague of mine. And she's absolutely terrified. Briefly chatting with her this morning by email reminded me that I have truly come a long way. Much farther than I ever would have imagined possible 15 months ago.

I learned this morning that even after all that I've been through, all the ways that I feel that cancer has robbed me of so much...it has not succeeded in taking everything from me. I am resilient enough to still be standing a year later. I am resilient enough to take from my own experience and share it with others. I am resilient enough to accept that I still have a few more chemotherapy treatments of my own, and more surgeries in my future...and know that maybe the best gift I can give another woman in my situation is my ear to listen and a hug (real or virtual) if she needs it.

Although there are many days when I feel like a shell of myself, there is still enough left over after breast cancer, for me to give to someone else.

I'm not entering the contest. Primarily because I don't feel like it really. (laughs) But it was a good thought to consider deeply as we move into breast cancer awareness month.

I have learned that I am strong...even when I'm weak.

Blood Work/Oncologist Visit

My blood work looks good so I am good to go for chemo tomorrow. My weight is down a bit ... I’m at 70.6 kilos (155 lbs). I think I’m down about four lbs from last time. I notice that my weight varies quite a bit though. The oncologist asked if I was trying to lose weight or it was just happening. I said I am trying a bit because I want to feel better and I’d sure like to get into a few more of my clothes.

I mentioned to the doctor that my lower back and legs feel weaker but over all my other symptoms seem to be improving ever so slowly. Tomorrow will be my 20th Taxotere treatment. My doctor said that is really good. If the Taxotere symptoms i.e. the fatigue gets to be too much for me, our plan would be to stop the Taxotere completely as I am at the minimum effective amount already.

When I started chemo in August 2008 I also signed up for a study. It’s a double blind study with 2/3 of the participants getting the study drug and 1/3 not getting it. Because I have many of its symptoms, I feel I am getting the drug.

So back to my chemo regime ... if we decide to stop the Taxotere, I could potentially continue on with the study drug only or maybe try some anti-estrogen therapy as my cancer is estrogen-receptor-positive or we could try some other treatment (chemotherapy or study drugs). I guess the message here is that there are options and when we have to we will decide what is best for me.

I think the oncologist and nurses are quite impressed with my overall condition, especially with me taking an evening course at the college.

I’ll let you in on a secret ... for two weeks of the three week cycle, I’m thinking to myself, alright I cannot do this any longer, the next time I see the oncologist, I’m going to ask to have my chemo cut back ... but then I have a few good days just before my next treatment and my attitude shifts to one where ... OK I can do one more cycle and then we’ll cut it back.

A Day Of Fun And Gifts

Yesterday was a quiet day. My mother and sister dropped by and brought some breakfast over. Very nice!! They had called prior to coming and asked if we wanted to go out but we had still been sleeping so we said no thanks. These days it takes me a good half hour and a strong coffee to shake the morning fog out of my head so that I can get moving. My mother had also brought over three different hats that I can wear. They will definitely come in handy with the cooler weather coming.

Later on, we went to visit our friends B and D. We had a nice visit looking at their wedding pictures from 1979. Everyone looked so young in the pictures ... where did the time go? We ended up spending the evening reminiscing, talking and snacking. It was very relaxing and enjoyable. And I walked out with a few Avon treasures ... how fun is that ... thanks D.

At about 11:00 pm, we’d been visiting for about 4 hours when my energy level hit the wall. I needed to go home or ... I said I’d be sleeping on their couch that night. I was fading fast so we headed home.

Today we’re off for lunch to my sister A’s and her husband’s place. We’re really looking forward to that. It’s been a while since we’ve seen them.

This week I spent a lot of time out and about visiting ... and it felt really good.

Next week is chemo and well, I don’t need to say much more than that.

Catching up on much needed rest

I've been sleeping pretty much all day. Last weekend, I zipped up to New York City because I scored tickets to see Paula Deen taping a new show.  I completely adore that little lady. The taping was a real treat and the bonus was getting to hang with my cousin Candice all weekend as well. We had a blast. Paula is just as cute live as she comes across on television. I was sad that she didn't cook for the taping, but just being able to watch her was a real joy.

I had a busy week at work and like the energizer bunny, I kept going and going and going...with the plan to do nothing this weekend but rest and do laundry. Well, Saturday is gone and the laundry is still staring at me. I suppose I will get to it tomorrow. Honestly I have no choice. I knew I was running low on energy when I found myself completely disinterested in any Congressional Black Caucus events. Usually I can get excited by the end of the week to make it out to one or two events but not this year. Everyday I dragged myself home from work and went straight to bed. Each morning I woke up feeling like I had not slept much the night before. By Friday, I was really moving slow and could not wait to get home and get in the bed so I could just sleep.

I am in a weird place (again) mentally. Seems like I live in  the "weird place" now. I set my mind on the idea that I needed to cram in as much fun as I could before my surgery. Recuperating for 2 months is not my idea of a good time. But like an over-eager dummy... I've gone way overboard in my planning. I have now been to Texas and New York in the month of September. The month of October is mapped out with trips to Atlanta and Vegas. Back to back weekends in Vegas at that. Judging from the way my body reacted to my flight to and from Houston...I'm worried about all this flying next month. But I intend to go on all of my scheduled trips. Just have to balance things out by acting right in the other aspects of my life.

I have to be really honest with myself. I'm eating everything WRONG, not resting enough, not exercising my arm, not massaging my arm... just not living right and paying the price I suppose. I haven't been doing my regular walking...just nothing. The trip to Houston was fun but the swelling that occurred afterwards was not cute. I really need to get my butt out every day and walk or run but the energy just isn't there. I want to wake up early enough for a 30 minute walk every morning but it never happens. My alarm starts going off at 5:20 am...and I drag out of bed usually just before 7:00 am. Its crazy. But I will work on doing better. I have to find a way to workout regularly. I am packing on some pounds these days. I wasn't aware that one of the side effects of my herceptin treatment was weight gain but it seems that it is.

From what I've read on the breast cancer message boards, gaining weight on herceptin isn't unusual. And all of the other side effects... runny nose, peeling/splitting nails, tingling feet & hands, swelling and so forth also aren't that unusual. So... its just a matter of learning to adjust to the changes and keep working on me.

My hormones are raging and most days I feel like a horny kid. It is madness and a little disconcerting since I'm not seeing anyone at the moment. I feel that my judgement is compromised so I have become even less approachable than I have been throughout this ordeal.

Its a sad shame. I will figure out how to handle this soon enough... I know that what I'm doing currently (hiding out at home, not accepting calls, not returning calls, not going out) is not the best course of action. Just have to do better...all the way around. Starting with getting enough rest every day.

How Fatigue Affects Me

I’ve often said that I have no strength in my legs for standing or walking. Well, today I wanted to share a few of the other ways constant fatigue shows itself in my every day activities.

Household chores such as washing floors, folding laundry, cooking, scrubbing pans, etc have become more than difficult. I have to constantly sit and rest while doing anything at all and to be honest ... I don’t do much house work anymore. Anything that requires physical effort just isn’t fun in the least.

Eating certain foods is difficult if not impossible. My jaw seems have no strength to bite down on some foods. For example; I have difficulty eating apples, fresh vegetables/salads ... raw carrots are out of the question. Sandwiches such as bacon and tomato or turkey or any type where the food is tough or chewy are difficult for me to bite through. So I usually avoid them.

Things like wraps are great for me because the food is already all chopped up. Last Wednesday when I went out for supper, I ordered Shepherd’s Pie which is ground beef with mashed potatoes. It was very easy to eat but I did experience something unusual for the first time. I had difficulty lifting the fork up to my mouth. Not sure if the outdoor table setup was an odd height or because it was an extra warm evening ... but my hand actually started shaking as I brought the fork to my mouth. I was so weak in my arms that evening.

Driving has become a bit of a challenge. Some days it feels like my car has standard steering instead of power. It actually takes effort to turn the steering wheel to turn a corner.

Brushing my teeth had become a real chore. But thankfully, my dentist gave me an electric toothbrush which cuts the effort by at least half. I now sit on the edge of the tub and let the toothbrush do all the work.

Applying make-up is no longer pleasurable. It requires too much effort so I don’t.

I can hardly believe I’m so weak.

At The Mall

Yesterday we stopped at the mall for coffee and a cinnamon bun. Good stuff!

Whenever I go out now, I’ve been wearing a hat instead of my wig. It feels so much more comfortable. People don’t really stare but I do think they look at me a split second longer at first. I’m kind of thinking to myself ... what took me so long?

We then headed to Sears to look at dishwashers and treadmills. I brought my Zuca bag along so whenever I got tired; I could just sit down on it. Like when the salesman was giving us the dishwasher spiel, I sat down at this dishwasher and then moved to another as he was talking. Easy breezy.

Out For Lunch, Out For Supper

Being my good week, I try and book up visits with friends. Yesterday afternoon was our regular Breast Cancer support group coffee get-together. There were only a couple of us as two ladies where suffering from the flu and others were busy with other appointments and stuff. So S and I had a nice chat one on one.

I came home for a couple of hours and then headed off for supper to “Vi’s For Pies” with some fellow co-workers from a previous job. We sat outside on the patio because the temperature was still close to 30C (86F). It was a bit warm for me at first but after drinking a couple of glasses of cold water and iced tea ... I cooled myself down a bit. There was a water fountain not far away and trees and flowers decorating the patio that added to the atmosphere. It was nice to catch up on all the news and especially to talk about something else other than cancer. I wasn’t sure I would be able to make conversation but with all the surfing and television I watch, I had no trouble at all.

When I came home, I mentioned to D that I had a lot to eat that day and I was happy about that. It had been a very good day.

Handrails Are Too Skinny

Yesterday I went to the clinic for my weekly PICC line dressing change. The chemo room was busy as ever and the nurse said, “Could you come back in about 10 minutes and take your time?” I said, “No problem, I need to go downstairs to physiotherapy anyway.” I needed to return the borrowed lymphedema sleeve as I had purchased my own a week ago.

On my way back, I was getting a bit tired and decided to use the handrailing that was mounted on the wall. Well as I slide my hand along the railing ... wack ... my fingers hit the mounting brackets. The handrails are too skinny and my fingers hit the brackets. Normally, this would be no big deal but this was one of my chemo fingers where the nail bed is lifting. Ouch!! It’s a bit sore today ... thank goodness it didn’t rip off.

So to all you handrail engineer reading this blog ... handrails must be fat like on escalators and not skinny ... otherwise, you wack your fingers on the brackets when you slide your hand along the railing.

There I feel better.

Ice Berg Feet

After sitting here with my coffee for a while, I decided to get dressed and put socks on, my feet are so cold right now. Chemo has given a whole new meaning to cold feet. D can attest to that ... they are definitely ice bergs.

That’s it for now ...

Fall Activity Line-Up

I'm a fan of fall for many reasons. For instance, my birthday is in fall. Also, new episodes of my favorite TV shows begin in fall. Maybe my favorite part of fall, however, is the perfect New England weather. Every other season, there's an excuse to stay inside: winter can be too cold, spring too soggy, and summer causes excessive back sweat. But with fall, I try to be outside as much as I can.

If you're like me, and want some ideas for outdoor fall weekend activities, read on:

1) Pick some produce. With so many apple orchards and pumpkin patches nearby, the options are endless. Nashoba Valley Winery in Bolton, MA is a great choice. Not only can you go apple-picking, but they have an operational winery with full tours and tastings. Also, On Your Feet Project is providing transportation to their annual Bluegrass & Brews Festival on Sunday, October 25. Have fun and support a great cause at the same time!

2) Check out an outdoor museum. The DeCordova Museum and Sculpture Park in Lincoln, MA has some cool exhibits. Also, Fruitlands Museum in Harvard, MA is a great outdoor option, and, as luck would have it, free this weekend (along with dozens of other local museums) thanks to Smithsonian's National Museum Day.

3) Get lost. In a maze. Made of corn. Sounds like a winning combo to me. I've gone to Davis' Mega Maze in Sterling, MA for the last two years, and only had to cheat once. If you're looking for something a little closer to Boston, I've heard Connors Corn Maize in Danvers, MA is where it's at. This year's theme is Family Guy, i.e., they carved Brian and Stewie into a 7-acre corn field.

So much to do, and so little time. Before you know it, we'll have turned the clocks back, dressed up in silly costumes, eaten a coma-inducing turkey dinner, and we'll look outside and there will be a mysterious white covering on the ground. So get busy and enjoy the foliage!

Dealing with my hair in its new changed state

I am a contributing writer to a breast cancer awareness website, Fight Pink. Stacy found my blog one day and just reached out to me, asking me to contribute to her site and provide a voice for black women struggling with breast cancer. Its been a good collaboration so far. The Fight Pink website is really awesome, lots of different perspectives about breast cancer, lots of good information. Just really a welcoming site.

Today, I had a brief email conversation with a sista-friend who is watching her father and his wife deal with cancer. (yes, both of them at the same time) And she was telling me that they are at the stage of their treatment where their hair is falling out. They are struggling with this latest loss and just reading her message took me back to the time when my hair fell out. I was so devastated then. And interestingly enough, I've been really thinking about losing my hair then and dealing with my "new" post-chemo hair for a few weeks now.  My hair is just so very different and dealing with it now is just amazing. Its nothing like the hair I had before. And it took me a few weeks before I realized just how much that difference in texture was making me reassess myself, my own beauty and what I felt about being a beautiful black woman.

As I try to navigate myself back to a place of "normal", issues about my beauty come up all the time. My weight is an issue, my mono-boob is an issue, my radiation "scar" (square patch of super-tanned skin), my nubbin, my hair... everything that is different about me now because of my breast cancer treatment causes me mini-moments of despair and distress as I wonder whether I'm still beautiful. Whether guys still find me attractive. And will it always bother me that my body will NEVER be the same again.

And then there's my hair. Its just weird now. Its so different now. Its...ugh. Its nice hair. I have to admit that much. Its really soft and shiny. But its not Nicole-hair. And then again, it is. Its just not the Nicole-hair I'm used to. Its different. Dr. S warned me that I would have new cute, curly hair after chemo but of course I didn't believe him. (gotta wonder why I didn't think he knew what he was talking about) I just figured that kinks would surprise us all and do what they do best -- be resilient to change.

I was wrong. My internal reaction to the difference in my hair texture has been crazy. Really crazy. When people ask me what I put in my hair...I have no idea how to respond. I understand what they are asking, and why...but when I say that its just hair oil and maybe some conditioner, they give me this look. Like..."why she don't wanna 'fess up that she got some chemicals in that hair?"  (laughs)  I just don't feel like having to explain every time that I have breast cancer and this curly cotton ball of hair that I have now is my prize for going through chemo and losing all my hair.

Anyway...I tried to explore my feelings about my new hair texture on the Fight Pink site.

I'm going to repost some of my Fight Pink article here... but I really want you to go to the Fight Pink website to read the whole article and let me know what you think.

I Am Not My Hair…


Washington DC–September 21, 2009–India Arie has a song “I am not my hair” and it’s all about her lifetime journey with her hair. Hair is a very sensitive and tenuous subject among black people, women especially. We have this “thing” about “good hair". In fact, Chris Rock is coming out with a movie called “Good Hair” about the very topic.

It is one of those things in our collective black experience that tends to drag us back to slavery issues, issues of acceptance in present times and self-esteem issues. Little girls with long, curly hair are often considered prettier than little girls with short, nappy hair. And that same mindset follows us doggedly into our adult lives as we learn to love and accept our hair - no matter the curl pattern we are blessed to have.


Entire blogs and on-line communities have sprung up around the issue of our black hair; how to care for it, how to love it, how to grow it, etc. There is an almost militant counter-culture making its way around the nation of men and women who are happily nappy and proud to showcase their affection for their very distinctive tightly-coiled, sometimes wiry, definitely defiant hair.


Before breast cancer, I wore my hair very short. There were many reasons. A part of it was because the very short haircut looked great on me; another part of it was that I like to sleep as long as possible and waking up early everyday to wrestle with my hair to prepare for work in corporate America was just not working for me; and another part was that even though some days I felt like a corporate sell-out, by wearing my hair very short and in a very distinctively black style, I retained just a small portion of my inner rebel against the mainstream culture that said I HAD to present myself in a certain way to be considered beautiful.

In other words, I took my frustration with my hair and turned it into a statement that dared anyone to look at me and not see beauty in my face.

I am not my hair.


Meanwhile, my very southern and very old-school parents had a hard time understanding why I loved my super-short boyish haircut. Long hair (for them) was very representative of beauty and without my hair, they worried that I would send the message to people that I was gay (which I am not), or that I was too strong to need a man in my life (which I certainly do not). I tried to reassure them for years that I never had a problem with anyone mistaking me for someone in the “life”. And men unfailingly found my short cut very sexy and ultra-sleek. It never was a problem, even with men who self-professed that they loved women with long hair. For me, they made the exception and embraced my standard of beauty for myself as one they too found beautiful.


For 12 years…I made the point with my haircut that I am not my hair.

When I was told that the chemotherapy would cause me to lose my hair, I did not think for a moment that it would bother me. I came into this world of breast cancer with an attitude that I was going to chop down this obstacle in my life and I wasn’t going to let it take me down. Nope. I was going to get through all of these treatments and surgeries and maintain the same life I was living up to that point. What was breast cancer to a determined sista? Nothing I couldn’t handle. Superwoman…that’s me.

Well, I’m sure my pink ribbon sisters are smirking right now because they know what I eventually learned. Yes, you can (and will) get through breast cancer treatments but you will also be changed - even if it’s just a little bit. But like I said in the beginning, I am not my hair. So, I had no idea that losing my hair would devastate me the way that it did.

http://www.fightpink.org/writers-corner/i-am-not-my-hair-by-nic-mclean.html

Settling Down

Had a quiet weekend ... blogged, read and relaxed. I went out for breakfast Sunday with my sister and mother. Coffee is becoming enjoyable again; this will be the week I OD on coffee.

Emotionally things are settling down a bit. I’m not as agitated and angry as I was last week. Sleep wise, I had a few intense dreams last night and woke myself up with this oddest sound that came out of my mouth. When I talked to my husband about it, he said it woke him up too and sounded like ‘metal’ clanging. I have these odd sounds that come out of me in the middle of the night ... it’s kind of bizarre.

I’m really hoping to feel good this week because it gives me the momentum I need to go into chemo next week.

This And That

The other day we found a card from our neighbor in the mail box. Inside it said something to the effect ... if there was anything they could do to help. Yesterday, she dropped by with a Saskatoon pie and again reiterating that they would be willing to drive me to appointments if necessary. How nice is that?

Well it didn’t take long for me to open up that pie. I’m still struggling with my taste buds but you know with a little ice cream, I thoroughly enjoyed my piece ... and D his. It’s been a while since I’ve had Saskatoon anything. I grew up on a farm and back then my mom did a lot of canning. That was one fruit that was free and plentiful as the berries grew wild. There was never a shortage of canned Saskatoon. It brought back memories of the old days.

This week, emotionally I’ve been feeling very grumpy. Not sure what that is all about. I may have to give myself a good swift kick in the ass. I think some of it has to do with the fact that I haven’t been feeling the greatest. I’ve had a sinus headache for most of the week. In the mornings, I wake up and sit in a chair in the living room staring at the wall for about 20 minutes just to drain some of the fog out of my head. Usually after a coffee, I’ll start feeling better; I think it’s because hot fluids loosen up some the stuffiness. I’ve been taking Benadryl thinking its environmental allergies but it doesn’t really do much. I do feel a bit better as the day goes by.

Government Of Canada Issues Guidance On H1N1 Influenza Vaccine Sequencing

Canada released new guidelines on who should be first in line for H1N1 pandemic flu vaccines.

As taken from the Public Health Agency of Canada website ...

The guidance identifies groups and individuals that will benefit most from immunization, and those who care for them. These include:

• people with chronic medical conditions under the age of 65;
• pregnant women;
• children six months to under five years of age;
• people living in remote and isolated settings or communities;
• health care workers involved in pandemic response or who deliver essential health services;
• household contacts and caregivers of individuals who are at high risk, and who cannot be immunized (such as infants under six months of age or people with weakened immune systems); and
• populations otherwise identified as high risk.
  

Personally, I’ve never had a flu shot of any kind, so now comes the decision … to immunize or not?

Shout Out To Stand Up To Cancer

Taken from their Wikipedia Page:

Stand Up To Cancer (SU2C) is a charitable program of the Entertainment Industry Foundation (EIF) established by media, entertainment and philanthropic leaders who have been affected by cancer. SU2C aims to raise significant funds for translational cancer research through online and televised efforts. Central to the program is a telethon that was televised by three major broadcast networks (ABC, NBC, CBS) in over 170 countries on September 5, 2008. SU2C made over $100 million after that evenings broadcast.

Please visit standup2cancer.org.

Food Just Ain't Fun Anymore

Yesterday was an alright day ... I stopped at the clinic for my weekly PICC line dressing change. The place was busy as ever. I stopped at the cafeteria to pick up a couple of cinnamon buns to take home for D and myself. They are usually pretty good but because my taste buds are off, I not only didn't enjoy it but my stomach felt overloaded afterwards.

Food has been a great friend of mine. I have always loved to eat and it has always given me a real satisfying feeling. Pre-cancer, first thing in the morning, I used to jump out of bed and have something to eat. That was priority. I used to always looked forward to the next meal. That is no longer the case. Now it seems I eat because my stomach says I’m hunger.

This being week two of the cycle which for me is the worst as far as taste buds go and stomach issues go. My eating regiment has included a fruit or some yogurt for breakfast and usually I go out for a simple sandwich. I really have to think about what I want to eat because sometimes I'll get something and it just tastes bad to me. Something as simple as bread can taste bad in my mouth. My favs at home are strawberry yogurt, cottage cheese and bananas. Coffee is awful right now. I just can’t really stomach much of anything in the fridge. It just turns me off.

I also find that my stomach tends to be highly reactive to what I eat. If my stomach doesn’t like it ... it just goes right through me.

These days ... food doesn’t give me the satisfying feeling it once did ... which kind of sucks.

At School Last Night....

At last night`s class we were to hand in a questionnaire the instructor had given out the previous week. The questionnaire included things like ... if we were part-time students or full-time students, if we worked in our field and so on. The last question was ...’is there anything I should know about that may be a challenge to your learning?’ I pondered this question a long time. I so did not want to play the cancer card. I wanted to complete school without getting any possible preferential treatment.

As I was considering my decision, I thought ... if this was a class where I could hide in a corner, I probably wouldn’t consider sharing the fact that I was under active treatment but this class is very interactive. I will be required to do presentations in front of the group and that scares me a bit. I wasn`t sure I could do it all without appearing a bit odd.

My decision was to tell her, the instructor, that I am receiving chemotherapy for cancer. I feel a weight has been lifted off my shoulders.

Volunteer Event! Kicking It With The Kids

It's time to get out there with the kids at the West End House!

On Wednesday, September 23 from 5-7pm, OYFP will be at the West End House in Allston, playing games in their sweet gym (see left) or unleashing our creative spirits in the art studio with the grade schoolers at WEH.

Volunteers can spend their time in the gym, in the studio, or mix it up and spend an hour in each.

And for those of you who can't get swing by at 5, feel free to come by at 6 for the last hour -- it'll be a great time! To make sure volunteers can really interact with the children, we're capping the number of volunteers at 15. Please email David at david.dsilva@oyfp.org to claim your spot.

Bring your gym shoes and your smocks and we'll see you there!

Picture courtesy of the West End House

Not A Good Day

I’m still trying to recover from the effects of the chemo. The fatigue really makes me feel frustrated, agitated and full of negative emotions. Sometimes I rely on the Ativan to calm myself for the night time sleep but it makes me so groggy during the day that I don’t really like to take it either ... it’s a tricky balancing act.

Already feeling a bit down and depressed I watched the news last night only to find out that Patrick Swayze died from his cancer. Then shortly after that they announced a local lady who had been in the news quite a bit also died from her cancer. Then blogging in the evening I read one of my fellow cancer bloggers died. I was definitely worked up and I ended up having a rough sleep.

I’m usually pretty strong but yesterday was a tough day.

its hard not to take it personally...

Patrick Swayze died tonight. He was 57 years old. He was diagnosed with cancer in 2008 and now he's gone. Every death, every new diagnosis... feels more and more personal. I have chemo day after tomorrow and my heart is heavy.

What did WE do? The millions of us struggling with cancer, trying to get better... trying to outrun the devil that is chasing us. What did we do to deserve any of this? What did our family and friends do to deserve the hard task of watching us struggle? And most importantly... how can we fix it?

I sent out a "tweet" (a message on Twitter) just after I heard about Patrick Swayze's death that said... "I HATE CANCER. RIP Patrick Swayze. When will we find a cure for cancer?"

I received a reply from someone I don't know that said... "What if it was demonstrated that harboring hatred creates cancer? Would you still hate it?"

The answer is I don't know. I really don't. I know that you're supposed to love your enemies but I'm having a hard time loving something that is trying to take me out. Its MY life. I'm supposed to live it on MY terms. Instead, my whole world revolves around cancer.

This thing is hard. Its scary and its difficult. I am grateful that I have a fighting chance at life but even knowing that right now I'm doing alright, the fear of harsh and painful death remains close to my heart. For every moment that I laugh and giggle, there is a moment where I reflect and cry. For everyday that I go through life wondering at the beauty and miracles of life... I do have days where I wonder what it will be like if this cancer comes back after me.

I'm trying to outrun the devil. And he is on my ass something serious. Death isn't the scary part. Its the pain that would come before the ultimate end that freaks me out. When it gets to the point where there's nothing that anyone can do except pray and hope for a miracle. When the doctors and medical staff can only "make you comfortable" because your body is shutting down. When you're living just barely enough so that your friends and family can say goodbye and I love you.

I tell you its hard not to take this cancer-thing personally.  I have a sense of urgency now. I would normally be going to sleep about this time, but instead I'm going to stay up for another hour or two and work on this book. If you see me, and I have bags under my eyes... its not the cancer... its the push to make my mark.

Gotta do it. Gotta make it. Gotta leave something behind.

It's Better

The weekend was spent getting over last week’s chemo treatment. It was not a nice weekend.

Today as we start a new week things are improving ... the worst of the side effects are over and ... I just woke up from a two and half hour mid-morning nap. I thought I’d do some reading and poof ... I was out.

Once again it’s a beautiful day out here and my goal is to get out and enjoy it ... even if it’s just for a cup of coffee or to take care of an errand.

Sunday Inspiration

Sporting A Hat

I’ve been complaining about my wig for quite a while. It’s itchy and annoying. Well on Wednesday when I was getting my chemo, I was just fed up with it ... it kept shifting on my head and getting messed up. By the time I left I was so grumpy that I decided to stop at the store at the clinic and buy me a hat.

Thursday I went out and about taking care of some errands and stuff and guess what ... I wore the hat instead of a wig. I felt so liberated and comfortable. I will continue to wear that wig on certain occasions but people don’t be surprised if you see me sporting a hat more often.

Back Pack On Wheels

Last week I mentioned I was looking for a back pack on wheels to help me get around school with my books and laptop ... well my sister O came up with a wonderful solution. She found a Zuca Sport bag and purchased it for me. This is quite a unique bag because not only can you haul stuff around but you can actually sit on it. So for me that is just perfect ... it goes with me everywhere. I can now go shopping without worrying about looking for a chair because when I feel weak in my legs, I just sit down on my Zuca for a few minutes. I have gotten rid of my purse and just pack a wallet in it so I’m literally hands free. It weighs just 9 lbs empty so is quite easy to maneuver if I don’t overfill it.

When I’m out and about with it, I do get a few looks but mostly because it is unique looking and people are interested in it. I showed it to the physiotherapist on Wednesday and she was quite impressed with it.

For more details about the Zuca bags see zuca.com.

I want to thank my sister O for this thoughtful gift. I just think it’s the cat’s meow.

Got Game?

I loved playing sports growing up and my sport of choice was soccer. I loved the half-time oranges from the soccer-moms (it's true they do exist), the beating up of boys (I was on a co-ed league) and of course playing with my friends. Being apart of a soccer team was much more than simply learning how to kick a ball; you learn team work, good sportsmanship and valuable social skills that stay with you as you grow up.

If you grew up playing sports, think about all the

coaches, trainers, and specialized help you received to learn the sport of your choice. Isn't it time you returned the favor by becoming a coach as well?

One such opportunity would be the volunteer Coaching Positions for the East Boston Recreational Soccer League. Here you will serve as an assistant coach for this introductory youth soccer program and be able to help teach these kids all the special skills you have obtained from previous coaches.

It's not even a HUGE time commitment either. They practice two times a week from 6-7:30pm and games are Saturday morning from 10-noon. The season starts on September 22 and ends on October 31. The location for most of these practices and games is East Boston Memorial Park (close proximity to Airport T stop-Blue Line).

Please do contact Jennifer Molina at 617-568-4701 or molinaj@ebnhc.org for more details.

Related Posts: "Champions" of a cause, An Olympic Debate

Picture Courtesy of: http://www.illinois-valley-news.com/archive/2008/04/30/index.html

Yesterday Was A Busy Day

Yesterday I started the day with a physiotherapy appointment at the Cross Cancer Clinic, the same day as my chemo. I remember making the appointment five weeks earlier saying make it a Wednesday because Tuesday I usually have chemo. Well it turned out I had chemo on Wednesday this time because Monday was a vacation day ... go figure.

The physiotherapist measured my lymphedema arm and said it was 10% smaller than that last appointment. This was quite an improvement but I have to mention that five weeks ago was week two of the cycle where my body was retaining the most fluid. Yesterday was just before chemo which meant the least amount of fluid retention ... we both agreed it has to do with fluid retention and is affected by my treatment.

She asked if I wore the sleeve everyday and whether there was any irritation caused by the sleeve. I told her that yes I wore it daily and it was not causing me any grief. The only issue we found is that fluid is collecting in my hand as the glove and the sleeve where causing a double compression at the wrist and wasn’t allowing the fluid to flow away. The physiotherapist has arranged for me to go to a medical supply store to get a custom glove that flares at the wrist and a similar sleeve to what was borrowed to me through the clinic.

If I remember it right, I am to come back and see the physiotherapist every four months for a couple of years and then once a year after that. She also recommended I replace the glove and sleeve every six months.

Regarding chemo ... my appointment was just before noon and went on for just short of four hours which made for a pretty long day. It was so busy in the chemo room that people where having their chemo started in the wait chairs and when a proper recliner chair or bed was available, they would get moved. Wow, there were people everywhere getting chemo. I was really lucky and got a bed right away.

I came home feeling tired and decided to take it easy for the remainder of the day.

having a night where i could really use a hug...

I am tired of breast cancer. I know things could be worse. I admit that I have been remarkably blessed throughout this ordeal. But it is an ordeal. And I'm tired tonight.

Sick of aches and pains. Sick of wondering what I did wrong this time. Sick of trying to guess whether something is a major problem or a minor issue. Just tired. So really tired.

I've been thinking a lot about what I've learned along this journey. My line when asked, is that I've learned to be softer and kinder to myself and to be more relaxed. I have actually learned a lot of things. One thing I have learned is to be a bit more bold and a little less concerned with other people. I don't mean that I have learned to be a jerk (or maybe a bigger jerk). But I mean, I have learned that sometimes it is okay to think about what Nicole wants first.

I'm in a sour mood right now. I'm hoping it will pass soon but right now... I'm a little down. I had a wonderful weekend. I laughed until I cried so many times. So many times. I acted a pure fool and it was good. But the after effects of the flight home are really dragging me down.

My body is swollen and a little achy. My toe that was simply throbbing and tender last night... got much worse today. At one point, I looked down at my feet as I was walking through the office and realized that my toe was bleeding and it wasn't my imagination that it was hurting. I was stunned. A week ago, I was getting ready for a holiday weekend of fun. A week later, I'm at work wondering whether or not this issue was simple enough that a bandaid would be sufficient or if it rose to the level that I needed to alert the medical team about my latest little dilemma.

I called the oncologist's office and tried to speak to a nurse. That turned out to be a big deal. Having an infected toe is a cause for alarm -- but only a little alarm. It wasn't alarming enough for my oncology team to care. They suggested that my primary doctor would be a greater help. So... I decided that I didn't need to incur another bill... so I took myself to CVS and pick up some hydrogen peroxide, some neosporin and some bandages.

I felt better when I got back to the office with my supplies and worked on my toe problem. My limp was still there but I was still scooting around the office. No one really noticed and that's good. Right now, the pain is about a 2 or a 3, which is a good thing.

I have chemo next week and I'm already feeling a little anxious about it. I am coming to the end of my treatment. Its a blessing...but it scares me. So many things can go wrong and I don't know whether its a good thing or something to be worried about. However, I have to keep pressing on. I can't stay in the negative space.

I'm rambling... which means my ambien has kicked in and its timed for bed. I need a hug, a good hug. But I also realize that sometimes you have to make do with what you have. Or in my case, don't have.

Chemo Today

I just got back from chemo and feel pretty good except for being a bit tired. It's been a long day ... so will make this a short post with more details tomorrow.

Wonderful weekend...but feeling a little swollen and a little frustrated

I decided to go to Houston for the weekend and it was a good move. I had a wonderful time and definitely found Houston to be a really enjoyable city. I didn't do everything I had planned but I enjoyed everything that I did. It was great.

However, I'm having some swelling issues that I had not really anticipated and I'm not exactly sure how to handle it. My ankles and feet, and also my left arm are really swollen and puffy. I read that breast cancer patients should wear compression sleeves when going on long flights but (of course) I didn't do that and now I'm a bit concerned. Because of a mix-up, I didn't get to come right home after the flight and lay down as I planned. I did get to lay down within a few hours but I'm not sure if that was enough. I know that I need to elevate my feet and my arm to help facilitate the movement of fluid in my body.

I had a pedicure last week before I left on my trip and now my toe is starting to hurt -- thanks to the swelling. I don't know. Its all very weird and strange...and scary. If I can't get this under control by tomorrow, I guess I'll be spending a little time at the emergency room.

I have to figure it out because in the month of October, I am planning to travel out of town by plane three different weekends. I don't want to cancel because I'm having issues. I want to go to all three events.

I will keep you posted about how I handle the swollen toe/foot/ankle/arm.

.....

I have been trying to figure out how to deal with (and discuss) an issue that I've had for a few weeks/months now. Honestly, I think that all I can do is to put it out there and see if this too helps somebody out.

Right out front... I am SOOOOOOO sexually um, frustrated?! Not sure if that's the best descriptor but some of my elder relatives follow the blog and I don't want to embarrass them (or myself) anymore than necessary. Boyfriends (and husbands too I suspect but I don't have one, so I don't know for sure) are useful for more than just a drinks, dinner and movies. I don't have one of those anymore. And while I didn't have much (okay, any) sex drive during the early days of my treatment... it is certainly coming back strongly now. And I'm all alone.


That presents a challenge for me. There are a lot of factors at play right now -- I am really single; my desire for dating ebbs & flows; I am still wavering about sharing my body with someone in its current state; and on and on.

Let me start with...yes, I can and do help myself to myself. But that's not the same thing and it doesn't satisfy the deeper yearning I'm trying to balance. In my reading, I've learned that it is not uncommon to lose sexual interest during treatment. And it is expected that your libido returns once you're beyond the harshest chemo treatments and all that. So, in that regard, Nic is right on time for what she's experiencing.

However, I have to say that feeling this way with no outlet is really making things interesting. I'm going to keep it really real... I know that I am coming into a season where my sexual energy is going to be really high. I just turned 40 and I've been looking forward to this for many years. (laughs) But, the challenge of trying to figure out how, who, and whether or not to try to resurrect (or create) a sex life is overwhelming just a bit.

Lately, I find myself practically drooling at cute men every where I go. Its ridiculous. On the subway on my way to work, when I walk out of my building to go to lunch, walking through the mall... shoot, I found myself staring intently at this asian brother in the Detroit airport the other day. Part of it was that he was cute, and he had an afro...but another part of it was that I had a moment where I simply drooled over his attractiveness. And that happens so many times a day that I am starting to be concerned.

Truthfully, sex with anyone in the DC metro area sort of scares me because our HIV rate is really high. And I know that a lot of folks don't believe in getting tested and consistently practicing safe sex. But even if I go outside of my area, that part of the challenge still exists. So, I am trying to convince myself that maybe celibacy is the way to go.

Gag.

I know all of my friends who are practicing celibacy are sitting there saying..."come on over to the other side, its not that bad". But sheesh... I don't want to. (laughs) We will see what happens soon enough. My guess is that it will continue because I'm just not going to give it away... so I have to wait until someone shows up and then shows himself to be worthy of that type of connection.

Ugh. This is annoying, embarrassing, frustrating and so on.

The other "side effect" of my hormone treatment (tamoxifen) is that I am gaining weight. I think I'm gaining like 3 pounds a week or something. It is NOT cute. I mean, I am still adorable (laughs) but this chunkiness is messing with my swagger, my style. It is hard to feel sexy and attractive, with all this going on in my head. I don't know what to do but I will have to bring it up to Dr. S when I see him again. Because this is getting ridiculous.

My energy level is better, but still not great. I've been told (not by any doctors mind you) that I just need to get back to exercising. Maybe weight training. I'm going to look into it this week. I have to do something different and soon. Because I cannot get fat -- I can't afford new clothes.

According to the breast cancer site (www.breastcancer.org), weight training will help me. So, I'm going to look into that very soon.

Gotta run...feeling the ambien kicking in. Plus I'm tired and a little frustrated tonight. Not sure if I will be able to make all the trips I have planned in October. And I really really want to go...especially Las Vegas for the blogging conference.

PS. If you know any beautiful, single brothers who might make a good catch (single, single, single) please feel free to introduce us. I'm a bit of a challenge right now, but I'm adorable and somewhat smart. I can be a good girlfriend. :)

This And That

This past weekend we were away visiting family in Southern Alberta. The drive was enjoyable and the scenery beautiful as always. It was great to see everyone. We had a nice relaxing visit and before you knew it ... it was time to go back home.

In preparation of my chemo tomorrow, this morning I had to make a quick stop at the clinic to have my blood pressure and temperature taken. The blood work and oncologist visit from last week meant I could skip it today.

Tonight is the first day of school for me. I must admit I’m a bit excited. I like it because it keeps my mind busy and worrying about school stuff instead of cancer stuff.

I’m also excited because as far as television goes, this week a new season starts. I’m a bit tired of watching reruns. As a matter of fact, as I’m writing this post; I’m watching the first show of the Fall season of the View. I kind of like those spunky ladies and their Hot Topics.

Shout Out To N.E.D.

Here is a portion of the email I received that describes what N.E.D. is all about:

I thought you’d be interested to know about a new rock band with a purpose: N.E.D. The group is comprised of six musically talented gynecologic cancer surgeons hailing from all four corners of the U.S. (N.E.D. is an acronym for "No Evidence of Disease"- a phrase that every gynecologic oncologist hopes to tell a patient after undergoing cancer treatment.) The band's mission is to enhance knowledge about women's reproductive cancers, bring hope through rhythm for women undergoing treatment, and raise awareness & money for the fight against the disease.

One of the ways they will be doing this is through their six-song EP with styles ranging from indie rock, to arena rock, to jam/band to folk-rock. Net proceeds from the sale of the CD will be donated to the N.E.D. Cancer Foundation in association with the Gynecologic Cancer Foundation (GCF) to educate the public about gynecologic cancers and support promising research. Both the physical and digital EP include an informational booklet about gynecologic cancers entitled, “What Every Woman Should Know.”

The album is slated for release on September 8th to coincide with Gynecologic Cancer Awareness Month.

Please visit the website: http://www.nedtheband.com/

Recording Your Life History

Have you ever considered writing a book?

I have but had no idea where to start. I know if I was to write a book it would likely reflect my life experiences and especially my cancer experience. One day as I was surfing the net, I came across this bit of information.

It is a guide to Recording Your Life History written by Inova Health System.

I thought it was pretty good and therefore ... thought I would share it with you.

5th Annual Taste of Fort Point Channel - Free Food & Music

VOLUNTEERS are needed for the 5th Annual Taste of Fort Point Channel hosted by the Friends of Fort Point Channel on Thursday, September 17th from 12noon-1:30pm at the Children's Museum Wharf Park next to the Boston Children's Museum.

The 5th Annual Taste of Fort Point Channel is a dining event featuring 15 local Fort Point restaurants that will serve up samples of their signature dishes for the public during lunchtime! This event is FREE and will feature live music and a variety of cuisine!

The Friends of Fort Point Channel are expecting about 1500 people at the event!

Details:
Date: Thursday, September 17th
Time: 12noon-1:30pm
Location: Children's Museum Wharf Park next to the Boston Children's Museum, 300 Congress Street, Boston, Ma 02210
List of restaurants

They are looking for volunteers from 11:30 – 2:00 to help welcome people as they arrive and give them a map of the area. If you or your friends are interested, please contact events@friendsoffortpointchannel.org.

Friends of Fort Point Channel is a nonprofit organization committed to making the Fort Point Channel an exciting and welcoming destination for all of Boston’s residents, workforce and visitors.

All over the place…

I am mentally all over the map these days. I realized this morning that I haven’t read anything breast cancer related (not including articles on the internet) in a little while. A few days, maybe even a few weeks. That’s pretty major for me.

My weight is picking up which is both good and bad. Good because my appetite has certainly improved. Bad, because my appetite has certainly improved. (smile) One of the nurses told me recently that the weight gain was due to the drugs I’m taking. The herceptin is significantly reducing my estrogen production in my body and along with that for some people, comes weight gain.

Oh joy!

Considering how little I ate during the early chemo days, I’m excited and happy that I am able to eat whatever I want, whenever I want now. But, I am starting to realize that I do not want to change my diet – even though I know that it would be good for me and better for my cancer. I have been dragging my feet about doing the detox my friend shared with me, and also about eliminating meat, sugar and refined flour from my diet. I do little things, here and there but I haven’t made that all sweeping change yet.

It is a little scary to think about changing everything I know not knowing whether it will truly guarantee me more years of living or not. I still have the “Nicole-math equation” rattling around in my head. You know… 30 to the 40th power divided by 5 = ??? How long do I really have left with this beautiful life?

The breakdown: 30, represents the percentage that my doctor told me that it’s likely my cancer will return. 40 represents my age. 5 represents the magical 5 cancer-free years that I’m hoping to reach once all of this treatment is done.

Since I am no math major (in fact, I was a lousy math student) I have no idea whether my equation makes any sense to anyone besides myself. But it is rattling around in my head, causing me to make crazy decisions and leaps of faith that I normally might not do. Like… deciding, un-deciding, and then finally deciding to go away this weekend. Or, asking a friend on a whim if I can visit him and ending the conversation with the cancellation of one trip and the unexpected addition of a separate trip. In the span of about 6 hours, I went from thinking about taking one trip this weekend, and one trip in October… to buying a ticket to Texas for day after tomorrow, cancelling my tentative trip to Atlanta and instead rolling out to Vegas for something entirely different. Plus a little get-away to Baltimore squeezed in the middle.

Normally, I would have found lots of reasons to talk myself out of all of these excursions. But, yesterday I had a brief conversation with someone about my decision to cancel the trip I’m taking this weekend…she reminded me that in order to have the life I keep saying I want to live, I have to actually live it.

Profound, right? (laughs)

Breast cancer has made me rigidly self-conscious and a little shy. Neither of which are natural states of personality for me. I am wearing my brain out over-thinking every detail of my life because I am so anxious that I may make the wrong step and bam! I’m back in somebody’s hospital wishing I had just been more careful.

Who am I fooling? I am not this scary girl. I’ve been her for a little while and it’s gotten comfortable here but really, I’m that girl that everybody always wants to laugh with, joke with and have a drink or a meal with. I am THAT girl with the bright eyes and winning smile who makes people comfortable because she’s just so comfortable. I am a little annoyed that breast cancer has made me the girl who looks over her shoulder; under the bed and then wishes she had a flashlight – before she even walks down the hallway to her own bathroom. All of the admonitions to take care of myself now – wear a compression sleeve if you travel, don’t allow any injuries to your arm to protect against lymphedema, sunscreen and bug repellant, no chemicals in your hair or on your skin, blah blah blah – are ruining my easy-going nature.

At any rate…I’m going away for the weekend to celebrate my cousin’s birthday and to see what Houston has to offer a single girl from Maryland in terms of fun and laughter. And next month, I’m going to Vegas to participate in a conference about blogging that should be eye-opening and inspiring and I’m taking a friend with me… just because he was open to the experience. I hope that come November, when I’m lying in bed recuperating from my surgery...I hope that these memories will sustain my joy and keep me focused on the living part of life.