Fighting depression

I suppose I'm beginning to sound like a broken record (yeah, that's a shout-out to the old folks reading this blog -- RECORDS -- remember those?). I'm terrified of depression creeping up around me.

Since the surgery, I've been in a frenzy of tears and sadness. I'm sleeping too much -- when I should be awake -- and awake at night, when I should be asleep. Its freaking me out because I feel like I'm shrinking away from myself. I'm over-thinking every step I've made on this journey and wondering if I did the right thing, made the right choices... am I going to be alright in the long run? I think about death far too much...and not in a proactive, let's prepare for the worst kind of way. But I think about it in a "what if I wasn't here" sort of way.

I know that those kind of thoughts aren't good. However, since I have dealt with depression in the past, I work on putting those thoughts out of my head and I focus my attention in other areas. So know that each and everyday, I am thanking God for your presence in my life as I count my blessings and work to relieve my mind of some of the emotional stress and turmoil that this cancer has brought to my world.

Studies have been done that show that after the active treatment for breast cancer has concluded, many women continue to struggle with their emotional health and wellness. Post-traumatic stress disorder and  depression (from mild to severe) can strike from day one when the diagnosis is delivered. Due to the nature of this disease, the focus of your active treatment includes all variations of eradicating the cancer cells but very little is usually addressed to your emotional health. I think that's a shame. Judging from the way that I'm feeling these days... I can honestly say that it should be a requirement that a mental health professional be consulted at least once or twice during the course of treatment.

Never thought I'd advocate for more doctor visits, but in this case I see a real need for it. Millions of women are living with bodies that are disfigured, self-esteem that has plummetted and sometimes a diminished outlook on life.

I feel crazy!

And not in a good way. I know that I'm not alone because a quick trip through some of the on-line forums on some of the breast cancer sites shows that lots of women are really struggling with body image issues, depression, fear, anxiety, and so on. A really big stressor for many women is balancing work, family and financial issues. Far too many of us are struggling to be all that we were before cancer and are frightened to our core of not being able to keep up. That is a real issue for me. I'm not sure how to find the solution, but I'm trying to figure it out.

One of the nurses at the hospital during my stay, was a breast cancer survivor. We chatted a few times and she eventually shared with me that she had opted to have both of her breasts removed and reconstructed with implants. She was a mother of 4 and was the sole income for her family. She shared that her implants were leaking and she needed to have them replaced. However, since she was the sole income for her family, she couldn't afford to take the time off from work in order to take care of her health.

Did I mention that she was a nurse?

I was mortified and scared... and a little relieved because I realized during that conversation that all of us -- patients, survivors, care-givers & supporters -- are walking a really thin line between living fully and shrinking a bit from the scary edges of life. I was relieved to know that I wasn't alone in my worries and my fears. But I was saddened because I realized that this lady was risking her health -- after taking the drastic step of removing her breast in case cancer came back -- because the fear of losing her income or her job was greater than the fear of whatever health repercussions a leaking implant would cause.

Somehow, when the dust settles and my mind is back to clarity... I'm going to figure out a way to help all of these women like myself, who are struggling under the weight of this disease and its financial burdens. I've been thinking and thinking of ways that it can be done -- primarily because I want some relief myself right now. But I know that if I need help, then there are thousands if not hundreds of thousands of other women out there who need financial assistance as well. There has to be a solution. Its just a matter of finding it.

Depression is not my fate. Poverty is not my fate. Low self-esteem, again, not my fate. These negative things are not my destiny. (sigh) I will keep fighting to smile, to be happy, to be joyous, to feel fulfilled in my life. Right now, its an uphill battle. But from what I've read... if I keep the faith, things will turn around.

Yummy Polski Ogorki

Yesterday I craved pickles. I’ve been turned off those babies since I started chemo over a year ago but yesterday was the day. I pulled out a fresh jar and D and I struggled to get it open but once opened, I estimate I had at least five pickles and not the itsy bitsy ones either. They don’t have calories but they do have salt and maybe that’s why I like them so much. Anyways, they were yummy, crunchy and delectable. I think I am good for a day or two now.

This morning I woke up extra early for some reason so I got up had my toast and Xeloda pills. I felt extremely tired and went back to bed for a three hour nap. I feel pretty good now.

It was a quiet weekend so I think that is all for now.

Feeling the financial crunch of being ill

I'm still at home recuperating from my major surgery the other week. It is so amazing that I went through 12 and half hours of surgery where pieces of my body where removed and then placed in other places....and then all of the blood vessels were micro-surgically stitched back together. It is AMAZING to know that I made it through all of that. I am in awe of the skills of my surgical team. Even though I was a bit of a problem patient for them I think -- not from a health issue but I wasn't emotionally connected and I wasn't reall hyped about the whole event. And that funky attitude really made a different in how I responded to the requests to do things while I was in the hospital.

But eventually I got my head n the game and did what I needed to do to get out of that hospital and back into my own home. Since being home, I have done some of the things I'm supposed to do. I do get my rest. I am not getting my walking which, starting tomorrow will change. I do try to eat and drink -- but I know I'm falling short on that too. My appetite is still pretty weak.

In an ideal world, I'd love to go and have dinner at one of my favorite restaurants in town, maybe have some drinks or coffee with friends and just laugh and enjoy myself. But, I can't see it happening right now. The bills of my life seem to come whether I have money to pay them or not. So, I have to stretch my money to cover this and that... and hope that there will be enough to pay for other things.

I want to do things like travel, buy a car, maybe buy a condo...but I am not sure how to work that plan based upon what I'm earning right now and what I have in the bank. Next year presents me with issues of more surgical procedures -- mostly out patient procedures, except for one. Each surgery means downtime and some additional costs that I'm not sure how I will pay. But I will pay.

The costs of being ill are high. Beyond the medical bills from the hospital, the doctors and the prescriptions. There's the additional costs of travelling to/from the doctors & hospitals, the costs of the medical tools and supplements that are needed -- like gauze, sponges, bandages, etc.

My appetite is really low... so low that I think I will be going back to drinking Ensure to make sure that I am getting enough nutrients and protein necessary for my healing. But that's again, an additional cost. And so forth.

I am dreaming of the day I can go back to work. I'm hoping that its very soon but I don't know when it will be exactly. When I go back to work, I will need more things to help me with that transition as well. Clothes, under garments that fit properly with support but without chafing, or rubbing. I have no idea where to find what I think I need.

I also have to be fitted for a compression sleeve for my arm to control my lymphedema. It was doing really well when I got home from the hospital but it seems to be puffing up again and I have to also find a physical therapist who can help me deal with this.

I will be searching for a budget program that will help me to figure out how I can stay on top of all these bills and expenses. I am confident that there is an answer out there. As soon as I find it, I will share it with you. If you know of anything that may help, please let me know.

...and help me find a way to let my family know that I'm not a Scrooge but gifts are going to be really minimal this year. The love is there, the money is not.

Website...Cancer View Canada

I’ve had a couple people send me the link to Cancer View Canada and I thought I’d share it with everyone. The website’s goal is to connect people to services, resources and information regarding to cancer. It includes information on prevention, screening, treatment and support.

Over the months I’ve found the whole site to be a good read. One thing I really like is that I can have clinical trials info on breast cancer ... in my area ... emailed to me. And that’s just great.

There is a lot to look at so stop by and have a peak...

http://www.cancerview.ca/

My First Public Wheelchair Ride

Yesterday we decided to hit Costco ... D phoned ahead to confirm they had wheel chairs, there’s no way I’d be strong enough to walk all those aisles. I’ve been very apprehensive of being pushed around in a wheel chair, never mind being seen in one. But you know what ... it’s like most things in life ... fear of the unknown ... because the trip ended up being pretty good. I sat in the chair and D pushed me up and down every aisle, we stopped and looked at this and that. It wasn’t a big deal.

I must say D needs some pointers on wheelchair chauffeuring because he’d stop and look at an item and say something like, “have a look at this” and I’d be ahead of him so I’d have to twist my neck to see what he was looking at. I didn’t have the heart to tell him he needed to pull me back to see what he was talking about. I just figured I get some extra neck stretches in for the day.

Costco is an amazing place with a lot of good deals but after seeing the huge line-ups to pay, we ended up leaving without buying a thing. We’ll try again another day.

Stretch and Exercise

Since I started my foot exercises this week I decided to start doing stretches as well. I’ve been stretching my arms and legs and it’s paying off because today I was able to have a look at the bottoms of my feet. I haven’t done that for months and months. This has all become possible because I’m off that horrible Taxotere. My last cycle ended five and half weeks ago and my body is starting recover.

My posture has become atrocious. To correct that, I’ve started sitting in a proper dining room chair while watching TV instead of the cushy living room furniture. I’ve also been pulling my shoulders back when sitting and walking.

My body is starting to release some of the fluid it was hanging on to. My moon shaped face is slowly disappearing. Yesterday, I pulled my belt one notch tighter ... so my chemo belly is going down and I’m back in some of my regular shoes. I’ve really been focusing on having protein at every meal and I think it helps with reducing water retention.

I’m so much more self-motivated now than when I was on Taxotere.

CDC ..Update For Cancer Patients

From the CDC website...

To help prepare you for the flu this season, CDC answers some of your most important questions about special considerations for cancer patients and survivors for seasonal flu and 2009 H1N1 flu.

Here is their link http://www.cdc.gov/cancer/flu/#1

Exercises and School

Yesterday I put together and started my exercise program for my feet. After doing some of the stretching exercise, I realise that my calves are extremely tight ... likely from the lack of activity on my part for the last eight to ten months. The exercises include ... picking up a tea towel with my toes and rolling my foot over a frozen water bottle. These two seem to benefit me the most when I do them in the morning.

As well as stretching my calves and feet, I’ve also been doing stretching exercises for my arms. Can I tell you ... I am so out of shape. I walk like someone who is 105 years old ... but I’m going to stretch all those weary muscles out and get in better shape. I only hope that Xeloda works because so far it is a very manageable chemotherapy.

Last night in class, we were working in small groups. One of the girls coughed and another said,”Bless you.” Then she said, “Oh bless you is for a sneeze ... what do we say for a cough?” I said, “Hope you don’t give me swine flu.” We all had a good chuckle. Now... there are only three classes left before I graduate.

Sore and Stiff Feet

The bottom of my left foot continues to be sore and stiff ... to the point where walking isn’t fun. I pulled out the yellow pages and looked up orthotics clinics and gave a few of them a call. One said I need a referral from a doctor. I also called a chiropractor. He also said I should check with my oncologist to make sure there isn’t any cancer in my foot that may be causing this issue. He would be willing to work with me after I talk with my Onc.

The reason I included a chiropractor is because I had great success in the past. I don’t go for the ‘bone cracking’ per say but I go because some do the active release technique which is like a deep massage stretching action. Years ago, they resolved tendinitis in my right arm after my mastectomy and planter fasciitis which I developed from walking marathons.

I just searched YouTube and found a video on foot stretching exercises that are similar to what we did when we trained for walking marathons. With any luck, I’ll have stretched out some of this stiffness/soreness before I see my Onc in a couple of weeks.

Volunteer Ideas, Vol 1

Whatever your interest or skill set, there is some creative way for you to give back to others and the community. Most of us have less money to toss around and give away than we did a couple years ago so we've been neglecting the people who need our support.

The answer: Time & Talent

My answer: Throwing out an idea or two or three every week on how to give back with a tiny bit of time/talent commitment. Here we go!

No. 1: Horizon's for Homeless Children

Some of you think, "why should I help someone out who got his/herself into this situation in the first place!?" Well this group of little ones is undeniably deserving of every bit of assistance and love we can spare. They were born into situations they will never understand. What can you do? Help them develop, learn to share, laugh, and make loads of positive memories.

Horizon's for Homeless Children sets up play areas at homeless shelters throughout Massachusetts and then supplies responsible, fun loving volunteers as "Playspace Activity Leaders" to "foster healthy development through interactions and play." And you're not just helping when you're on site! While you're playing with the kids, mom/dad/guardian is able to attend career counseling classes so he/she can find a job and get a real home.

Locations: all over MA
Commitment: 2 hr shift every week for 6 months
Training: 3 hour training
Duties: think Mary Poppins of Joey Gladstone - be the fun 'adult'
Contact: Horizons for Homeless Children (617) 445-1480 or (800) 560-7702

How do I know it's good? I volunteered as a PAL during college. Questions? Just ask!

genetic testing, saying no to prophylactic mastectomy and more bills

I received a letter the other day from my insurance company. They denied payment for the genetic testing for the breast cancer gene. I was disappointed but only slightly. My disappointment was slight because the one decision that I finally made was to tell my surgeon that it didn't matter whether I had the breast cancer gene or not, I did not want to have a prophylactic mastectomy.

Making that choice to keep my breast was a hard one. And it was one where I really questioned my own stubbornness and wondered why I was so attached to anything that had the potential to kill me down the line. Since removing the breast could not guarantee not having cancer recur, I had to follow my gut. Removing my breast on the chance that cancer could come to that breast just wasn't something that ever felt right in my spirit. So, I finally said no.  But it was hard. And I do understand why a lot of women opt to have this surgery done. The scare with my mammogram the other week did make me pause and really reflect about the possibility of doing this dance again. In the end, I decided to keep my breast and say no to the surgery.

Sadly, I said no after making the decision to have the genetic testing and after having my blood drawn for the procedure. I wish I had made the decision before that. Could have saved myself some money. But, I will have to pay this bill when it arrives because I asked for it.

I received a call the other day that my results are in for the genetic test. (rolling eyes) I truly do NOT want to even know. Crazy sounding I know, but I don't. I have to make an appointment to find out the results. And figure out how to pay for this expensive test. With the cost of this test, I will have spent at least ten thousand dollars out of my own pocket during this breast cancer journey. I think if I add the costs of money spent at the drugstore for this, that and the other thing -- it may add on another couple thousand to the costs.

Once I speak with the geneticist, I can report whether I have the breast cancer gene(s) and how that information will affect my treatment going forward. One thing I know... I will be sharing the results with my family so that they can be armed with some knowledge that will help them in the future.

a week after surgery...recuperating just fine.

Its been about a week or so since my surgery. I have to say... I am very surprised at my recuperation. I expected to be really down and out of it for weeks on end. But I'm up and moving around -- a little slowly -- and I am not in excruciating pain. There is pain... but its not as bad as I had anticipated.

The doctor was pleased with my healing progress so far and I'm moving on to the next phase... trying to figure out how to minimize these scars and do all I can do to heal my skin and my abdomen. I'm ready to get back into my life again.

From an emotional standpoint, I'm not quite sure where I stand really. I'm up and down... still quite emotional from the past few weeks. Can't really put my finger on what's bothering me -- I think its that I'm chasing a feeling that keeps eluding me. I feel like I'm "chasing normal". The feeling came down on me really hard while I was in the hospital and it hung around for quite a few days.

I'm trying to get back to a certain feeling, a certain place in my mind where I'll be normal again. Where I'll feel like myself again. And everything that I do to get there, disappoints me because when I get there, I still feel like the cancer-girl. I am sick of it.

I woke up from surgery feeling tired, in pain and so deeply sad that it really took me by surprise. I was grateful for the visits from family and friends during those few days because it really helped to lift my spirits. Now that I'm home, I feel less sad but still I'm struggling with depressing thoughts. I expected this surgery to be a quick fix, I think. I thought that I would wake up, look down and smile when I saw my changed body.

Truthfully, I almost cried.

I was not prepared for the bruising, the pain the stitches. I was not prepared for the inability to walk, sit up, or stand. But, even with that... I am grateful that I'm healing well and feeling a bit better.

I'm down to just one drain. Had four when I was in the hospital. The doctor believes that I'm healing well and she asked me if I was happy with the size breast that she gave me. I am. It is a nice size -- I'm guessing a DD -- but there is still swelling and all that. So it may shrink some before its all said and done. It will require some mental adjustment because it is not the same size as my natural breast and when (if) I decide to take the next step in this journey and have my other breast reduced and lifted so that it matches -- I'm still going to have to see myself in a different way.


Today, I am plotting the rest of the year and making plans for next year. From a medical perspective, there are several surgeries in my future and while I am not really excited about them, I will do what I need to do to keep this train moving forward. It just may take some time. I've been moving pretty fast in getting things done. I will probably slow down and take more time between procedures. The costs are adding up in ways that I had not imagined previously.

I thought that the quicker/sooner I did "the next thing", the better my mental outlook would be. But that's not exactly what's been happening. Each new step has created a new whirlwind of confusion, sadness, and all kinds of emotions that I was really trying to avoid. Concerns about everything from my health, my survival, impact on my family, impact on my job, impact on my finances, and my dating prospects have swirled around my head and my heart with each step I've taken. 

I am mentally and emotionally tired now.  So, I'm going to give myself some time to just get comfortable where I am. The one thing I learned from this experience -- moreso than the other steps on this journey -- is that moving forward when you're not sure, really isn't the best thing to do.

I'm happy that its over but in hindsight, as much as I didn't think I could wait longer...I believe I should have waited a few months longer. I think that I was so hesitant because the truth was that I probably needed to get comfortable with my body in its altered state. This body with all its scars and discolorations (and aches and pains) is my new normal. This is it.

This is it. Realizing that is like letting go of a big breath of air. Exhale...

I'm focusing now on this moment, this perspective, learning to love and accept this life that I have -- which isn't the life I had before and that requires a different out look on life. But this is what I have, this is what I fought for. This is why I cried through chemotherapy for four months. This is why it was worth losing my tastebuds and my fingernails. This is why it was necessary to go through 2 months of radiation. To watch my skin blacken and peel away from my body. This is it. This is why I had to miss the inauguration of the first black president of the US to have my mastectomy. This ... is it. This life, right now, at this moment -- scarred, battered and bruised -- has to become my joy. Its not some thing out there... its right here, within me.

I've been asking myself (every day)... what's next Nicole? What do you appreciate about your life? Where do you want to go with your future? I don't have any answers yet, but I'm working on it. I do, however, have a flat tummy. (smile) Haven't seen one of those in a long time. 

Xeloda Cycle Two - Day Seven

The side effects I seem to be experiencing from the Xeloda so far are cramps and diarrhea, neuropathy and hand/foot syndrome symptoms.

The stomach issues seem to have settled down a bit. I’m learning that I have to be ever so careful of what I eat and drink otherwise my stomach tends to rebel. The oncologist prescribed Metoclopramide but even that doesn’t always do the trick. After I laid down in bed last Saturday night, I was struggling with stomach cramps. I had already taken Metoclopramide but it didn’t quite do the trick. I then took an Ativan and that seemed to settle me and my stomach down. I guess the trick is to relax the mind and the body will follow.

For the past year, I’ve been calling my feet and hands issues ‘hand and foot syndrome’ when I should have been including the word ‘neuropathy’. I’m just now beginning to realize there is a difference between neuropathy and hand/foot syndrome.

Neuropathy is nerve damage and causes tingling, numbness, and a pins-and-needles type of feeling where as hand-foot syndrome is where the palms of the hands and soles of the feet become red, swollen, cracked and painful (tenderness, tingling, burning) and the skin may peel, blister, or develop sores. These two side effects appear to be very similar.

Melissa Etheridge - I Run For Life (Live)

Molly Mall Walker

Yesterday D and I spent some time walking around the mall. It was nice to get out see it all decorated up with Christmas lights.

Tho I felt good most of the day, later in the day I struggled with diarrhea. I’m not sure if was caused by my gulping down too much water or the fact that I had too much yummy potato salad.

My stomach continues to be upset.

My other grumble for the day is that after walking so much yesterday, the ball of my left foot which has been slightly sore is now very sore.

The lesson learned is.... everything in moderation.

Second Cup Group

Yesterday I had coffee with the ‘Living with Cancer’ group which I’ll start calling the Second Cup group.

Three of us met and we talked for three hours ... wow and that went by quick. One of the ladies has a central line (CVC) like I used to have. I asked her if she experienced any irritation around the site. She said yes. She used chlorhexidine wipes to clean the area plus she used a saline spray afterwards to rinse it off a bit. She said if she missed the saline spray then when she pulled the bandages off, her skin would come off too. That sounded familiar. I then told her about my experience ... that I had developed an allergic reaction to the chlorhexidine. Her eyes got big ... I think it all made sense to her.

I wanted to thank C for giving two hats to me. She no longer has a need for them. I was excited because you know how it is ... a bald chick can’t have too many hats.

We made plans to meet again next week.

Breast Cancer Support Group Coffee

Yesterday I met the breast cancer ladies for coffee. As I drove to the mall, I felt so joyful ....to be feeling so good on such a beautiful sunny day. We have been having some unseasonaly warm weather here lately.

In the mall parkade, I found a parking spot against a wall that was slightly wider than the rest.  I like that because I find my vision is a bit poorer and I lack some confidence when driving in poorly lit areas. My walk to the mall was a bit faster than normal and easier ... and that made me smile.

We had a nice visit and before we knew it was time to go. I stopped at a shoe store to look at slippers for the house. I wasn’t convinced they were what I was looking for so I decided I’d do some more research. I may stop at an orthopaedic shoe store and get some professional advice.

Remembering To Drink Water

As per the oncologist, I have to drink more water during the day to help flush the Xeloda out of my system. How am I going to remember to drink eight glasses of water when I can't remember what I did five minutes ago?

Well I read about this little trick. It said to put a tiny container and eight pennies by the kitchen sink ... as I drink a glass of water I toss a penny into the container. With any luck, by the end of the day, there should be eight pennies in the container. The next day just empty the container and start all over. I've actually used this little trick before and it has worked for me.

Well I'm off to drink another glass of water ... hopefully; I won't get distracted on the way there.

Living With Cancer Support Group

I just got back from our last ‘Living with Cancer Support Group’ for this year. For our last meeting, we had a nutritionist from the clinic come and answer any questions we may have had regarding diet and cancer. I found her information very helpful. Even though I’ve read or heard a lot of this before ... it’s a great reminder to get back on track with a proper diet.

The nutritionist brought a variety of samples of meal replacements for us to try. I grabbed a sample of Boost fruit flavored beverage and Boost pudding plus a new product also put out by Nestle called Resource 2.0 which is a high calorie drink. I’m going to try them another day as I have class tonight and don’t want to risk an upset stomach.

well, i am home and i am in pain

I have to thank my sister, Michal for updating the blog in my absence. Her post was really quite lovely and she's absolutely right... I have been graciously and wonderfully supported during this lastest stop on the journey.

Since I just got into bed and it seems that finding a comfortable resting place is going to be difficult... I may have to keep this initial post short.

Few notes:

• the surgery was far too long
• the way my stomach feels right now,  I'm not sure iI made the right decision
• I really expected to wake up and feel "all good"...but I don't.
• All of the love and kindness is truly appreciated
• I'm really feeling very sad.

There are a few side effects that the sugery kicked off; like the lymphedema in my left arm is SERIOUS right now. Which means, more doctors, more appointments and more time/money. Right now I have three drains hanging out of my body -- and its gross as hell. I'm swollen like a balloon and it is NOT CUTE at all.

But I'm here and a few days ago, I really wasn't sure that I would be. I'm tired, I'm scared and I'm without any percocet to get through the night.

But I'm here. Details will come soon... and they will be more entertaining than this post. I promise. Its just been a long few days.

Blood Work And Oncologist Visit

I just got back from the clinic. My time there was a bit long because the lab was running behind. We didn’t have all the results of all my blood work back but we had enough for the oncologist to send me to the pharmacist for my Xeloda pills.

In my visit with the oncologist, I brought forward a couple issues. The first issue being that I have a crackling kind of sound coming out of my lungs. It occurs in the evening when I’m laying down to go to bed. It’s not a new side effect but it is definitely more noticeable. I also mentioned I was coughing more and had some signs of shortness of breath. The other side effect I mentioned was the swelling of my feet. She didn’t seem too concerned and said we’d keep an eye on both issues.

I also asked her about taking the Xeloda pills. The prescription says I should take the pills twice a day ... so my question was ... should I set an alarm for 6:00 am? She said no ... just take them when I wake up in the morning and then in the evening with my supper. The one thing I was reminded to do that I wasn’t doing was to drink lots of water. She said we need to flush the Xeloda out of my system ... especially my kidneys.

That is about all I remember for now.

Eat Better this Season!!!

"Imagine for a moment if we once again knew, strictly as a matter of course, these few unremarkable things: What it is we're eating. Where it came from. How it found its way to our table. And what, in a true accounting, it really cost," - Michael Pollan, The Omnivore's Dilemma

Let's follow in the footsteps of our forefathers this season (minus the murderous killing spree) and get our food local. Come down to Suffolk Law School near the Boylston T stop this Tuesday to learn about local and sustainable eating in the Boston area.

We'll have FREE local snacks and a raffle for Apfel Eis Wine from Still River Winery in Central Mass.

Our distinguished speakers:

Alex Loud, Slow Food Boston
Matthew Kochka, ReVision Urban Farm
Jessica Banhazl, Green City Growers
Jamey Lionette, Lionette's Market

DETAILS:

RSVP To: boston (at) OYFP (dot) org by 4 p.m. Tuesday and get a free raffle ticket!!!
Date: Tuesday, November 17th
Time: 6:00 p.m. to 7:00 p.m.
Location: Suffolk Law School Faculty Dining Room, 4th FL Suite 495 120 Tremont Street Boston, MA, 02108-4977 617.573.8000
Who: OYFP Boston, Suffolk University's Sustainability Committee
Cost: Free

Cancer Survivor Inspiration

One step forward, two breasts back

A few weeks ago, Nic wrote about her pending TRAM flap surgery and her uncertainty about going through with it.  Well, I'm here to say that even with up-to-the-last-minute doubts, Nicole underwent the twelve hour reconstructive surgery on Wednesday and is faring very well.  When I spoke with her today she was experiencing some pain but had a great sister-friend and an awesome cousin visiting and making her laugh.  I can't begin to describe the feelings and emotions that she's experienced (just over the last five days) with the raw eloquence that she does, so I won't even try.  Anticipating her return to the blog, to describe the latest stop on her journey, will give us all something to look forward to.

I will say-as her friend, her sister, her prayer partner, her ace-thank you for all of your love, support, and prayers.  Being the modest woman that she is, she may remove this blog entry later but since I have the floor now...Nicole is such an amazing, inspirational sister with a story that many don't even know the half of.  The strength that this woman has shown (even in her weaker moments) during her journey with breast cancer has been admirable, to say the least.  I am so proud and blessed to have her friendship and I look forward to growing old together.  Interestingly, while I'll be old and saggy, Nic will be oldER and perky.  Hey, you've gotta try to find the bright spots wherever you can!

Nic, I love ya, girl! And thank you for trusting me with your baby (blog).  And for those who may think that my usage of the term 'raw eloquence' is an oxymoron, you must not have read this sistah's writing.

-Michal

Lunch And A Flu Shot For Dessert

Yesterday I had a nice lunch with a couple of old girl friends. I received flowers and a bear from one and my other friend paid for lunch. It was nice to meet with these gals. We had worked together in a previous job so there was no lack of conversation ... lots of news to get caught up on.

Then ... I went for my H1N1 shot. I walk in and am six deep for two nurses. Oh I thought ... I should be outa here in half an hour.... not! One woman had a young boy who didn’t want his shot and after 15 minutes the nurse said something to the effect of.... “Are we giving the shot or not?” The nurse instructed the mother how to hold the boy’s arms and legs and the deed was done.

Then there was the lady who was in wheel chair and on oxygen. She got her H1N1 shot and panicked. She started hyperventilating and screaming that she had intense pain in her back. She said call an ambulance. The two nurses called for a supervisor and all three calmed her down. She eventually left with no side effects.

Can I tell you ... I was ready to make a dash for it as this was turning into a gong show. Finally my number was called. Yahoo. I told the nurse that I thought they all were amazing. It took about 45 minutes to get through three people and then 15 to get through three more.

Anyways, because I had my regular flu shot in my left arm and I have lymphedema in my right arm, I had to get this shot in my thigh. I didn’t even feel it, but I can I tell you ... today I am limping. Ouch it is sore.

Coffee, School And The H1N1 Shot

Yesterday I met with C from the Living with Cancer support group. We’ve been meeting at Second Cup because the coffee shop has a few of these nice soft leather chairs to sit in. The tricky part is making sure no one else is sitting there. So far we’ve only had to wait a few minutes before the chairs become available. C and I had a really nice chat and before we knew it ... two hours had passed and it was time to leave.

Later in the afternoon, I spent time working on my school group project. It is due on December 1 with only a couple more classes after that to bring this course to an end. It really is going quick.

Today I’m off to lunch with a friend and then the H1N1 shot. My oncologist said I should get my shot the Friday before I see her... and today is that day. What are the odds ... Alberta Health Services opened up the shot to my category and age group the only day I can get my injection for this cycle? Love it when a plan comes together.

Swollen Feet

Today I thought I’d talk about my swollen feet. My swelling problem has gone up and done since I started chemo in August of 2008. At one point when I was on full dosage of Taxotere, my ankles were swollen to the point that I had to cut the sides of my socks because the elastic at the ankle was too tight. Then as we decreased the Taxotere dosage, the swelling went down to the point that I thought was almost normal. I started wearing some of my nicer tighter fitting shoes.

About a month ago I notice that my left foot started swelling ... back I go to my looser shoes. Shortly after that I started Xeloda and noticed my right foot started to swell  Feeling a bit frustrated ... last night I jumped on the internet and searched other people’s experiences. Looks like Xeloda can cause swelling of the feet ... darn it ... to the point that I may have to buy bigger shoes. It was also recommended I purchase insoles to help protect the bottoms of my feet. So my short-term plan is to go back to my runners until the swelling gets too much and then I’m going to shop for new shoes.

In the next few days I’m going to go look for some indoor shoes. At one of my oncologist visits the doctor recommended I wear good shoes indoors and outdoors. What she meant by that was that my toes need to be well covered and protected. Why? Because the hand/foot syndrome has given me poor feeling in my feet and there is a tendency for me to whack them into corners of furniture, walls and such. If I’m not careful I could really do some damage to my feet.

Remembrance Day Song

the mammogram was fine!

The other day when I went in for a mammogram, a mass showed up on the film that concerned the radiologist. Of course, her concern frightened me to my core. When I saw the mass on the film, I could only think about July 2008, when I went to the first radiology center and had to have a discussion about the possibility that my lump was cancer. Over a year later, the fear is still very very real.

I am happy to say that after I dropped off the film from my previous mammogram for comparison, I received a call from my doctor who told me that the radiologist felt that the mass that showed up on the film was NOT cancer.

Thank God.

Of course, in those hours between the first conversation and the second... (in my mind) I had already started thinking about going through chemo again, surgery again and all that comes along with it. I'm glad to know that I was worrying for no reason.

I believe that I will have to have a mammogram every 6 months (or possibly every 3 months) on my remaining breast in order to stay on top of any possibility of cancer showing up in that breast. But I would rather do that than remove the breast just in case.  But this "scare" really showed me that although I feel like I've come a long way in my treatment and I have a good attitude about it... I am truly still very scared about breast cancer. And that may take a long time to get over.

Living with Cancer Support Group

This morning I was at the Living with Cancer support group meeting. This particular group is quite small but has a good representation of a varying cancers and stages of cancer. Personally I find these groups very therapeutic. I feel reenergized and more positive after I attend one of these meetings. We have one more session left and that will be it till next year.

A couple of weeks ago I collected contact information from the group members so that we could make plans to get together outside the formal setting. So last Thursday we met for coffee at a Second Cup. We plan to do the same this week. It’s nice to get together and be able to talk ‘cancer’.

Let’s talk again about why getting a pedicure is a no-no

Ms. Nic (also known as fancy-pants) decided to hop on a plane and head to Texas for fun and frolicking with my cousin and a friend for Labor Day Weekend. Wanted to see Houston for myself and just get away from the DC madness for a couple of days. In preparation for the trip, Ms. Nic/Fancy Pants decided to have a pedicure. Can’t go all the way to Texas with old toes, right? Okay…so what, the oncologist warned repeatedly that pedicures were not good for cancer patients. I figured if I went to a very good and reputable salon that I trusted, I would be okay. Hmmm….wrong, wrong…WRONG.


I went to a salon I trusted. I felt that the technician did a wonderful job but I failed to inform her that I was in treatment for cancer and that she needed to be extra careful with clipping my nails.

When I think back, I don’t really know why I didn’t say anything. I had gotten pedicures before during the summer and each time I was very adamant that the technician be extra careful with my toes. And they were. But this time, I think I was upset about something (can’t recall what exactly) and I didn’t want the pitying looks that always follow… “I am in treatment for breast cancer”. So I didn’t say anything. I just sort of watched her closely.

I can recall the snip that probably caused all the problems I would have later. I felt it when she tugged at that nail. But…I didn’t say anything. I just prayed it would be okay. It was…for about a week. And then things started to get a little janky.


Kill me now…

So…when my toe started looking a little crazy, I dismissed it. Started doing my own thing with it. Kept it clean and bandaged. Kept putting my trusty Neosporin on it…and didn’t think much else about it. I figured it would heal shortly. And when shortly stretched out into a little longer…I figured that since my immune system is still slightly compromised that maybe the healing would take a little longer but it wasn’t a big deal.

By the time I realized that the toe wasn’t healing and that maybe it was a big deal about a month had passed. I called the oncologist’s office and he seemed rather cool about it. Well, let me put it this way – he didn’t seem too stressed about it. So, I took that as it wasn’t a big deal and I went about my merry way. He suggested I go to see my primary care doctor and left it at that.

I didn’t call my doctor for another couple of weeks. I could run off a litany of excuses but the real thing is that I didn’t want another bill showing up at my house. For one little ol’ janky toe? (waving hand) Chile cheese… couldn’t be that horrible, right? It’s just a toe. Again…wrong. So very wrong.

So…about two weeks ago, I finally get in to see my primary care doctor. He was kind as always and when he looked at that toe – I could see the laughter in his eyes. That thing was ugly – not horrible but definitely in need of attention. He wrote a prescription for some antibiotics and gave me a referral to a podiatrist and sent me on my way. He told me that my infection was pretty common. Folks get infections from pedicures all the time. And he also reiterated that I am not supposed to get pedicures while I’m in treatment.


Y’all do realize that I am a hard-headed knuckle head sometimes, right?

I took the prescription but didn’t go see the podiatrist. (yeah, yeah…I know…I suck) Normally, when you take antibiotics, they kick in right away and things are all better halfway through the prescription. Not this time. That’s when it finally hit me that I was in a little bit of trouble and I needed to get on top of this.

Now… to clarify the timeline… I got my pedicure at the beginning of September. I saw the podiatrist at the beginning of November. That’s TWO WHOLE months later. See the issue? I had made all sorts of excuses, had ignored what was going on with my body…and basically put my head in the sand and refused to see that there was a real issue at hand.

A hard head makes a soft behind … everytime.

The podiatrist was pleasant but he was not pleased that I took so long to come and see him. My infection wasn’t that horrible but still it was bad enough. And it could have easily become much, much worse. He had to numb my toe, freeze the skin, clip the nail and cut away a portion of the infected area. I walked like Frankenstein for the rest of the day. (serves me right)

The podiatrist told me a frightening story about a little boy with an infected toe that wasn’t treated properly or within a reasonable timeframe and the infection ate away the bones in his toe. Yikes! Caused him to be hospitalized for a couple of weeks… double yikes! And ended up costing his family over $35,000! (And this was about 20 years ago…so imagine that hospital bill today.)

Sigh. Ms. Nic/Fancy Pants has learned her lesson. (again) I am not as healthy and strong as other people. I have to take extra precautions – even when I don’t feel like it – because the slightest problem can become a major issue. And the longer I wait to address a problem, the worse the problem becomes.

Today, I had to show my crazy toe to my surgeon because she was worried that if the infection was too bad, I would have to reschedule my surgery. (I may do that anyway depending on the results of the mammogram film review but we’ll see) She looked at me with that same pitying look that I was trying to avoid initially… But this one was all on me. (shaking my head…)

So to be clear… NO PEDICURES while you’re in treatment for breast cancer. No matter how pretty the toes could be, the risk of infection is truly not worth it.
 

....janky toe! yuck.

Drew Carey And The Million Dollar Challenge

Drew Carey will give 1 million dollars to LIVESTRONG if he gets 1 million followers on Twitter by December 31st, 2009. And if he doesn’t get a million he will prorate it to however many followers he has by the end of the year.

Cool eh!

Freaked out by a mammogram

This morning I had a mammogram scheduled. I wasn’t too concerned because it was really just routine checking to make sure that all was well with my remaining breast. I didn’t want to have the mammogram but I knew that I needed to have it done.


So, imagine my state of mind when my “really quick” mammogram turned into a 3 hour ordeal of filming, re-filming, ultrasound, a consultation with the radiologist and a consultation with my plastic surgeon.

I freaked out. My heart dropped when I saw the films and there was a mass – very distinctive – in the breast. I kept telling myself that it couldn’t have been my film, that there must be some mistake…God simply would not do this to me TWICE.

But…if you’ve ever had a mammogram or an irregular pap smear… you know the crazy heart palpitations that immediately start hammering in your chest as soon as they say… “There’s something of concern here”.

Sigh.

I’m freaked out and scared. I want to run home and crawl into the bed. But I can’t. The radiologist did not seem super-concerned BUT at this point; after all that I’ve been through even a little concern is a lot to me. Nothing showed up on the ultrasound. That is a good thing. She wants to review my film from my previous mammogram tomorrow (I have to bring it to the hospital for them) and check it against this morning’s film. I am hoping…and praying and wishing…that it’s nothing.

The plastic surgeon remarked that even if it’s something, its likely small enough that it can be taken care of without radiation to that breast. (Radiation? Wow… how did we get here already?)

It’s a lot to absorb today…my mind is practically shut down. I’ve snotted and cried on the phone to my mother, on my co-worker’s shoulder and on the phone with my best friend…and I’m drained.

The funny thing is that while I was getting the mammogram done, I was chastising myself about feeling negative about the process. The self-chatter was crazy but it was effective. I eventually shut up that little voice that kept screaming… “I hate this!” And I convinced myself that having the mammogram done and knowing if there was anything wrong was so much more valuable than any pain, discomfort that I may have felt during the exam.

Right now, I’m freaked out. Ready to cancel the surgery this week. Just ready to push back and try to regroup and get my head together. I still don’t know the results of the genetic test. I’m worried about this mass that showed up on my mammogram…and most of all I’m just downright scared about being under anesthesia for 10 hours.

Today…it is too much to bear. But I’m going to handle it because I have to. You know…thank God for mommas. My mom let me cry and boohoo over the phone and she didn’t make me feel bad for being so scared. I don’t want to go through this again. But if I have to, I am so grateful to have the people in my life who love and support me through the madness.

why an advance directive is necessary for your life

I'm watching "Last Holiday", the movie with Queen Latifah and LL Cool J. In the movie, Queen is a mousy, quiet woman who is diagnosed with a fatal disease and given 3 weeks to live. In a disturbing twist, her health care plan will not cover the necessary procedure that could save or extend her life. (That little twist played right into my own fears about health insurance with breast cancer...)

As I continue to prepare for surgery, I have to think about (and act upon) some unpleasant tasks. The first one being... preparing for the "just in case" because surgery is a risk and something could happen.  As you know, I'm single, never been married and I have no children. So... I never really thought that I needed a will. And then breast cancer came along and showed me that my life is fragile -- just like everyone else's -- and while I don't have much, there are some things that I would like to share with certain friends and family when I'm gone. And contrary to my own belief, I do have my own thoughts about how I want to live my life... you know, just in case.

Few of us like to think about death. But the reality is that having an illness like breast cancer means that you have to be wholly aware of lots of details about your life and its impact on your loved ones. Now, I'm not going to make you guys think that I'm bold and bravely walking into this "being a grown-up" thing. (laughs) Nothing of the sort is true... but I was reminded the other day that I do have to accept the possibilities that something can go wrong and try to prepare for it.

Prepare an advance directive

When I went to take care of my pre-surgery bloodwork the other day, the administrator asked me for an advance directive. I didn't have one (which was okay) but after I left the hospital, I realized that I actually did have one on-line. Suze Orman (financial guru that she is) has an online will and trust program on her website that will allow you to prepare an advance directive in about 5 minutes.  [Suze Orman, Will and Trust link]  I actually had created an advance directive a couple of months ago. I just had forgotten about it. (Still need to finish that will though)

What is an advance directive?

An advance directive tells your doctor what kind of care you would like to have if you become unable to make medical decisions (if you are in a coma, for example). If you are admitted to the hospital, the hospital staff will probably talk to you about advance directives. A good advance directive describes the kind of treatment you would want depending on how sick you are. For example, the directives would describe what kind of care you want if you have an illness that you are unlikely to recover from, or if you are permanently unconscious. Advance directives usually tell your doctor that you don't want certain kinds of treatment. However, they can also say that you want a certain treatment no matter how ill you are.

 Okay...so here's the deal... take 5 minutes and think about what you would want done if something were to happen while you're in treatment or in surgery (as in my case).

• Is it against your religion to donate your organs? Does anyone know that?
• Do you want the medical team to do whatever it takes to keep you alive or would you want them to let you go in peace, if it looks too bad?
• What do YOU want to happen in YOUR treatment?

I know these aren't sexy thoughts...but its part of the reality of life with cancer. And trust me... its really not that painful at all. Remember the mantra... YOU are the boss of your treatment. That's the song that is playing in my head repeatedly... I am the boss. I am the boss. I am the boss.

Feel me?

The choices I made in my advance directive may not be the same choices that you would make. But that's what makes it such a necessity and also what makes it so very cool. This journey (with all its bumps and curves and hills) is mine. It is not one-size-fits-all... it is custom-fitted for me.

Actually completing the advance directive on Suze's site took about 2 minutes. Literally. She's got it all worked out so that you just fill in a few blanks and bam, you're done. The hardest part was actually thinking before-hand what I want. And committing to it.

Which I did. :)

Xeloda Side Effects - Cycle One

I sure want to thank everyone who has left comments and sent emails on their experience with Xeloda. I have a bit more confidence taking it now that I have an idea what to watch for when it comes to too much Xeloda.

One of the side effects the oncologist told me to watch for was red swollen hands and feet. She said if my palms become red and swollen to the point I can’t see the creases, I need to call the triage nurse immediately. I’ve already experienced the redness on my hands and feet. I see it first thing in the morning. It’s like I got sunburn on the palms of my hands and bottoms of my feet.

I’ve only got this evening and tomorrows Xeloda to take and then I’ll be done with 14 days of pills. After that I have one week with no pills which will end my first three week cycle.

How Am I Feeling?

Well I’ve been feeling mildly nauseated and a little headachy. My head feels full and sound seems to be amplified. It’s like I’m hypersensitive to stimulus. Unfortunately this makes me easily agitated.

Last week I said my coughing had improved ... well that was short lived because I’ve been coughing a bit more. I think the fluid around my lungs must be getting worse because I’m also experiencing some shortness of breath.

As far as fatigue goes ... it’s not too bad but I have been sleeping like 10 hours a night.

All in all, I feel ‘grumpy’ in the mornings and better in the afternoons.

Canadian Cancer Society - Join The Fight - Visit FIGHTBACK.CA

WARNING: COURSE LANGUAGE

You are the boss of your treatment plan

I met with the surgeon who performed my mastectomy on last Friday. It was a follow-up visit to make sure that my healing was progressing well and to see how I was reacting to the radiation treatment prior to my scheduled reconstruction. I liked my general surgeon -- he has a fun personality and is very knowledgeable about breast cancer and surgical procedures in that treatment.

We talked for a bit about how I was handling the consideration about removing my breast. I got teary in the midst of our conversation and I explained to him that my logic about losing my breast did not match up with some of the other people in my life whose opinions mattered to me. I mentioned to him that my mother felt that I should get rid of the breast just to reduce the chance that cancer could come back to that breast. He responded that as a parent, he would likely give his child the same advice -- but as a doctor, he knew that removing my breast was not going to zero out my odds of breast cancer happening again. Nor would it keep the cancer I had from recurring.

I said to him that I knew or rather I felt that I was being a big crybaby about all of this and I was really trying to keep it all together. And he looked at me and smiled and said... "If you're being a crybaby... after all that you've been through... then what in the world are the rest of us doing as we go through our lives?"  He told me that I had been through a very traumatic experience and it was okay to cry.

It is okay to cry.

That's something that I know. That's something that I tell my new pink-ribbon sisters when I talk to them. It is really okay to grieve and cry about your situation. But for some reason, I am fighting with myself on a daily basis to grieve over this process. I guess I'm fighting my own tears because I know that I've come a long way and I should be happy that its over. Or almost over. But I really feel like I just let go of a breath I've been holding for a year and now the tears are coming, the fears are surfacing and its difficult.

You are the boss of your treatment.

My surgeon told me that I am the boss of my treatment plan and progress. He reassured me that as long as I was hesitant about removing my breast, it was not the decision that I need to make. That comment made me feel a lot more comfortable about my desire to keep my breast. I will, most likely, have to see the doctor relatively frequently but I'd rather go every 3 months to be checked out than to wake up from surgery without my breast.

Let's hope that this boss is instinctively right.

Keeping Busy

Yesterday afternoon we had our Breast Cancer support group coffee. As always, it’s nice to get together with the ladies. Everyone seems to be doing well.

I came home and feverishly worked on my school project. It is a group project ... so there are three of us working together. My task was to create a survey for a group of employees. We are analysing training for a company’s department. Last night I emailed the first draft to my partners ... hopefully, with a little fine tuning, it will be what we need. I’ve still got a cover letter and letter of agreement to put together. Normally, this isn’t something I’d like to be doing but it keeps my mind occupied so I’m OK with it.

With regards to the new chemo, Xeloda, I’m still feeling pretty good. I’ve had a couple of bouts of diarrhea. I’m hoping it’s because I added some dairy products back into my diet. I’m eliminating those immediately. My other challenge is eating first thing in the morning and then later in the evening. Xeloda has to be taken with food twice a day.

Maybe I could ask the Xeloda blogger followers how you handled taking the pills. Did you take those 12 hours apart ... if not, how many hours apart? What time do you take the pills? What type of food do you eat when you take your pills? I don’t digest well late in the evening and therefore am looking for something simple to eat when I take my pills ... any suggestions?

The law is on my side…but will my employer be? Post-mastectomy procedures must be covered by your insurance.

http://www.dol.gov/ebsa/publications/whcra.html

I just reviewed my benefits renewal information from my employer. (I’m late opening the package but I knew I wasn’t going to change anything on my package so there was no urgency).

Right on the first page is a notification box that refers to “The Women’s Health and Cancer Rights Act of 1998”…which goes on to say that after having a mastectomy my health plan has to cover certain post-mastectomy medical procedures.

By law a breast cancer patient may elect and must be covered for:


• Reconstruction of the breast on which the mastectomy was performed;

• Surgery and reconstruction of the other breast to produce a normal cosmetic appearance;

• Prostheses and

• Physical complications for all stages of mastectomy, including lymphedemas.

Well, right away I’m kicking myself for not opening this envelope a month ago. Would have saved some worries and some anxiety. (Laughs) Although I know (now) that my medical procedures are covered by my health insurance, my worry about my position in my office and with my company remains the same.

Can I salvage or maintain my position with the company in light of all my expected surgeries and medical needs?

I was just briefly chatting on twitter with one of my pink ribbon sisters (@silknsaber) and I was complaining that I was really feeling exhausted with all the medical appointments and pills and bills. I am TIRED! My sister was right there with just the right thing to say and then she hit me with a bombshell. She has had 3 surgeries in 6 months! Yikes.

Can you imagine? She said that she just told her doctor that she’s had enough. She didn’t want to go through anything else for a little while. She said to me that she understood what I was feeling because she too just had reached a point where she did not want to be touched anymore.

Two of the procedures that she’s had done, are definitely in my future – nipple reconstruction. But I will also have a surgery on my remaining breast to make it look more like the reconstructed breast – a little lifting, a little reduction. And when I was thinking about all that she had been going through, it hit me. That’s going to be me next year.

Everyone around me is in a good celebratory mood about the ending of my chemo. My doctors, my colleagues at work, my friends… but not me. To many people, the end of my chemo is the end of the road for my breast cancer treatment. But the honest truth is I have only started on this road. This is not a sprint… it is probably the longest marathon in the world. In fact, I can’t see an end in sight. That scares and depresses me.

If it is my right as a human being and a woman with breast cancer – to do whatever it takes medically to bring myself back to “wholeness” – can someone explain to me HOW it is supposed to happen? I am grateful that the law exists that says that my breasts are important and how they look is important and that my illness should not take that important thing from me. However, the reality is that every surgery means a few things – it means money (either my own or my insurance company’s), it means time (time for the procedure and time to recuperate) and it means adjustment.

Being single with breast cancer not only sucks, it puts you in a very precarious position

As I prepare for the next stage on this journey, I think often about the sister I met online who delayed her reconstruction for 8 years. She too was single like me and I think of her because I can understand her desire to wait so long to take care of this “vanity”. I keep telling myself over and over that I am not crazy for wanting to have a second breast. I am not vain for wanting to look balanced like a normal grown woman. I am not horrible because I’m sick of wearing this “shoulder pad” (that’s what I call my lightweight prosthesis) and sick of worrying whether it’s peeking out through my clothes. I know it’s my right to be restored but I am really wondering how I (or anyone else) can be expected to be a part of any office environment if you’re out frequently taking care of medical issues? How do I balance my illness with my desire to do a good job for my employer?

I carry this guilt with me everyday that I am costing people too much – too much money, too much time, just too much something. Everyday, I look at my colleagues and I wonder what they really think about my schedule. I go to the doctor just about every week, sometimes multiple times in a week and I wonder whether or not they look at me and think I’m slacking or I’m faking. In my heart, I don’t think they feel that way about me (well maybe someone does but its not the majority) but it is difficult convincing my head that it is not true. It’s a hassle feeling this way.

I’ll be out of the office for another 6 weeks this year. I will be out of the office probably for a couple of months next year. And it’s likely that I will disproportionately be absent from work for the rest of my working years. I just want to know who gave this disease the right to take so much from me – for so long. And I really want to know how do I counteract what it is taking away from me?

My friend Sophia wrote a wonderful article for Essence magazine's website (Essence.com) (Sophia's article on Essence.com) about being there for your single sisters who have breast cancer. There are a lot of us who do not have husbands or children but who are fighting this disease with a different sort of support system. I would be crazy (I mean, nut-house crazy for real) if it were not for the prayers of my family and friends, the friends I’ve made on twitter and facebook and the opportunities to connect with other women across the country who are dealing with the same issues at the same time. But as it comes to dealing with my job and the fact that I have to have a job, that I have to have insurance and that if I drop the ball in any way, I’m going to suffer greatly – I become very overwhelmed and afraid.

I do not know how to do this. But somehow, it has to be done.

Making decisions in your breast cancer treatment when you’re terrified

I am TERRIFIED. Absolutely, positively…crazy-girl-on-the-horror-flick SCARED. And I’m scared of making the wrong decision. I have been weighing, contemplating, analyzing, crying, praying and meditating about what I should do next in my treatment plan for breast cancer.

I am holding on to the mantra that my general surgeon gave me last week: “You are the boss.” Doesn’t always feel like I’m the boss, like I’m in charge – but ultimately I am. And if you’re struggling with cancer – or any other huge life-changing issue – you are as well.

It is tough being in charge. You have to trust your instincts and get as much knowledge as you can, as quickly as possible. You have to be resilient and persistent and you have to just have FAITH.

I am resilient and persistent and I do have faith but I also have a lot of fear. Here are the steps I’m taking to move beyond the fear and into the solace of making the right decisions for me.

Steps that move me forward:

• Pray and meditate – this one is obvious and cannot go without saying. I pray everyday. Feels like all day long – I am constantly “shouting out” to Jesus to help me, to strengthen me… to hold me. When I start to feel like the anxiety is choking me that the fear is taking over – I ask others to pray for me. That usually helps a lot.

• Review the situation – this is also basic and easy but I’ve found that when I stop for a moment and really ask myself “what are you making a decision about?”…I usually find that the decision that needs to be made is not the same thing that I’m worried about.

• Remind myself that I can only do what I can do and no more – this one is harder because I feel compelled to do all that I can do, all that I need to, and all that I feel that others expect me to do. That’s a lot of stuff to do – and many days I fail miserably because I’m more focused on what I think other people expect me to do, than what I can do.

• Research the options – sometimes I procrastinate on making a decision by doing extra research. Google is my friend. And very often the more that I research a situation and the options, the better I feel about my instincts about the situation. The more I learn, the more I know.

• Set a deadline to make a decision – sometimes the deadline is inherent in the decision itself. Other times, I have to set an arbitrary deadline just so that I’m not spinning and spinning and spinning. (this is where I am right now)

• Pray and release my decision to the universe – at the end of the day, the person affected by my decision is Nicole. There will always be another way that something could have been done but when I accept that I make the best decisions I know how to make with the information that I have at my disposal…it is okay.

• Walk away – after the decision is made walk away from the thoughts of it. Walk into the steps you need to take to get it done. In the end, all things will work out in your favor. That’s just the way that it goes.



Just writing all of this down has helped me tremendously. I have been struggling and struggling and I’m absolutely worn out. My world around me is chaotic which only tells me that I’ve really been struggling for sometime now. The truth is no one can promise me anything on this journey. None of my doctors can tell me with 100% certainty that any procedure I opt to have – or not have – will be the thing that saves my life, extends my life or makes my life better. In every step I take, there is a possibility of failure, of death or something in-between. Getting to a point where that possibility still feels like the very best thing I can do for myself is a very long journey.

But I am surely getting there. Starting today…I am making decisions that are best for me. Because I am the boss.

Virtual Flowers

Michelle, a fellow breast cancer survivor sent me some flowers via email. Please stop by her site, Michelle's Next Phase and send her some 'positive vibrations'.

Xeloda Week 2

Well the good news is that I still don’t have any real side effects of the Xeloda. I’ve been feeling pretty good.

I just got back from the ‘Living with Cancer’ support group and later today I have my class.

My mind is a bit blank so I think that is all for now.

Race To End Women's Cancer Marathon In Washington, D.C.

I’ve been asked to help promote the Race to End Women's Cancer Marathon that will take in Washington, D.C. on Sunday, November 8, 2009, at 7:00 am.

Here is the 31 second PSA.

Embarrassment preparing for the TRAM flap surgery

Today was my pre-op appointment with my plastic surgeon for my upcoming breast reconstruction surgery. I am having the TRAM flap done. I wanted to have the DIEP flap procedure done – less down time and no muscle cut -- but there is only one doctor in DC who does that procedure and I could not get onto his calendar. I also did not want to travel out of the state/region to have it done because I thought that it would be too difficult to navigate the return trip home afterwards. Going through the airport is already a pain in the butt...imagine after you've had hours of surgery and have been in the hospital for a few days. Yikes. No thank you.

So, after a detailed conversation with my plastic surgeon, I opted for the TRAM flap a few months ago. And promptly put my mind on other things.

This morning, I completely FORGOT that I had this appointment. I was on my way to work, thinking about cupcakes and then the reminder notice pinged on my blackberry. I was stunned. Between me and you, I think that I’m in denial about having this procedure done. I feel like I’m on a runaway train and I can’t find the brakes. And that is really not how it’s supposed to feel.

George Washington University Hospital is a teaching hospital so it is not unusual for student doctors to be with a member of my medical team when I have an appointment. I think that I have a reputation as being a relatively easy patient because it seems that many of my appointments are ones where students are in the room with me and my doctor. Normally, it doesn’t bother me. Today…the two students were guys and it bothered me. Deeply.

After all that I’ve been through; all of the doctors and nurses who have seen my body in various states of dress…I was not prepared to be so embarrassed when the plastic surgeon asked me to drop my pants while she examined my belly area. It felt very invasive. Not cool.

Considering that normally I only get undressed from the waist up…I had not considered dropping my pants. I had not thought about her touching me, in front of two strangers and examining me so intently. Yet, there I was, face burning hot…trying not to look at these two young men too directly because I felt…so exposed and really embarrassed.

I was relieved when she asked them to leave only to be further embarrassed when she pulled out a camera to take pictures of me.

Before my mastectomy and my chemotherapy, I took a picture of myself naked so that I could remember what I looked like before my treatments. However, since my mastectomy, I have refused to take a picture of my body in its current state of disfigurement. I did not want to keep a picture of this crazy radiation scar (hyper-pigmentation) and I did not want to see a picture of my mastectomy scar. Its difficult enough looking at it when I’m in the bathroom alone. I didn’t want proof that breast cancer had changed me so much.

But today…proof does exist. And it’s proof that I won’t even be able to control or hold in my hands because its part of my medical files now. I am so embarrassed and I’m not completely sure why. I am unhappy today. There is so much to do before the surgery and I am still seriously contemplating cancelling it completely and just pretending that I’m okay just the way that I am.

So many things can possibly go wrong. The surgery scares me, to be honest. And while I want to feel like myself again, I’m starting to really accept that I’m never ever going to be that person again in my life. The normal for Nicole before breast cancer just doesn’t exist anymore. And that really hurts.

Today is a day...I could use a big ol' hug. But a cupcake from Red Velvet will have to suffice.

Family Time

Yesterday we were over at my sister A and her husband's place for lunch. Her daughter was in from out of town and we wanted to make sure and get a visit in. We ended up having a nice lunch and spending most of the afternoon together.

This morning, it was off to breakfast with my other sister D and my mom. I brought my chemo pills along so I could take them at the restaurant ... still not quite used to the idea of taking chemo by pill. As far as side effects go, I’m doing real well ... in fact I have none to speak of. Of course I know that could change any day but I'm happily appreciating each day I have no ill effects.

Just woke up from a nap so I think that’s all for now ...

Feeling crazy about testing for the breast cancer gene

No more herceptin!! I'm all done with chemo. I'm all done with my cancer treatments pretty much. How amazing is that? Wednesday was supposed to be another chemo day, and the day that I gave my blood sample for the genetic test. I was really upset in the days leading up to my appointment... thinking about the genetic test for the breast cancer gene and the ramifications afterward had me really worried. It turned out to be my final day of chemo. I was disappointed because I was really looking forward to having some designer cupcakes delivered to the cancer center as a celebration. Ah well...



TESTING FOR THE BRCA1/BRCA2 GENE
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA


After talking to the geneticist....I was more confused and more scared than before I met with her.

The reality is that most women do not carry the breast cancer gene. However, the other side of that coin is that I did have breast cancer and two of my aunts did have breast cancer. And I was diagnosed under 40 years old. That is an unusual situation that means that getting tested is a good idea.

One thing that the geneticist mentioned that I had not thought of, were the ramifications of having a breast cancer genetic test in my history. (sigh)  She tried to reassure me that getting the test was less problematic from a health insurance perspective than having breast cancer. I had not thought of that at all.

How crazy is it that you have to compound your health concerns in the present with insurance, job, and financial concerns in the future?

I would think that insurance companies -- and possible future employers -- would want to know whether or not someone has the breast cancer gene in order to be in a better position to treat the illness before it becomes a huge financial burden. Is it me or is our system rather backwards? We seem to be enslaved to insurance companies who simply DO NOT want to consider preventative health measures. But who do want to give punishment for those who ultimately do have to deal with major health concerns. It makes no sense.

The way that the hospital sets up the testing, you have to come in and meet with the geneticist so that she can explain to you what the test is, what it does and how it works. Then you have to be told that the test costs almost $4,000! (and you have to sign papers that you were informed of this cost) before they will even schedule the blood draw.  The hospital has a system now where they run the paperwork to your insurance company BEFORE they test your sample, to find out whether or not the insurance company will cover any of the costs. Many companies do cover the test cost -- but not completely. So, if my insurance company covers the test, my contribution will be about $500 or so.

Sigh.

I opted to take the test because I feel an obligation to know. I feel an obligation to let my family know whether or not this is something that we need to be aware of. I feel an obligation to myself to do all that I can do to ensure that I am as proactive as possible with my health. I may have a daughter one day -- its a slim thought but a possibility -- and after all I've been through, it would be horrible NOT to know something like this might be lurking in my baby girl's dna.

The test results won't be back for about 2 weeks. I will have to make the decision to keep or remove my breast without knowing the results of my genetic testing.  That is very scary but something that cannot be helped.