My sister came with me to my ultrasound appointment today.  I do have something.  They think it might be scar tissue.  They called it “altered tissue”, whatever that means.  I’m supposed to go back in 6 months to have it checked again-or if it changes form.  This is a better outcome than I expected, but it still means more waiting.  I hate waiting.

I have a lump on the same side as I had cancer.  I have an ultrasound next Tuesday and I gotta say, I’m a little freaked out.  My Dr who doesn’t necessarily have the best “bedside manner” felt it and said “ya we better get an ultrasound.”  No mincing of words, no acting like it’s probably nothing.  No trying to not make me feel like it’s anything but cancer returning.

I keep hearing the surgeon saying last time that they were afraid it was too close to my ribs and they couldn’t leave a big enough margin around it that they were comfortable with.  This lump happens to be in the same area (if I had a boob) that it was last time but against my rib instead of in the boob itself.

When they called today I saw my phone vibrate and saw the Dr’s number come up, then saw the little message symbol.  Even though I’ve been waiting for them to call and tell me when my ultrasound appointment is, I was still shaking when I was talking to them.  Getting the appointment date seems to make it all official now and I really can’t ignore it anymore.

I would really like to go with it just being scar tissue or a blob of fat but inside I don’t think so.  Inside I feel like it’s cancer.  Again.  And I’m really trying to stay away from thinking that.  I really don’t want to go through all that stuff again.  Not so soon after the first time.

I hate the waiting game.  Wait for the ultrasound appointment to be booked.  Wait to have the ultrasound.  Wait to get the results of the ultrasound.

I really need this to be nothing.

 

My friend commented that I haven’t written in here in a long time and he’s right.  And I’m not sure why I haven’t.  Having breast cancer is always on my mind.  Not a day goes by that I don’t think about it.  Maybe it’s because I know I may not be completely cured, that I still have a 20% chance of a recurrence and that scares me.  Maybe it’s because I’m constantly reminded when I look in the mirror that my body will never be “normal”.

I’ve been put on a new cancer medication in place of the Tamoxifen called Co Exemestane and ya, it has side effects.  The worst one for me is the bone and joint pain.  It eased some after being on the Tamoxifen for a bit but it’s back with this new medication.  My knees and fingers go from an annoyingly nagging ache to down-right painful.  I’m hoping it will ease up a bit.  The hot flashes and night sweats aren’t as bad so I guess that’s the trade off.

October, November and December are the hardest months for me, those were my chemo months and of all the things I wish I could forget, it’s those months.  I still get really anxious and depressed when I think of those days.  December 20th is the hardest of all.  That was my last chemo treatment and I still have the same feelings now thinking about it as I did living it.  I’ve forgotten a lot of stuff around those 8 months of my life, but have not forgotten anything about the chemo.

In some respects, getting diagnosed and treated for breast cancer feels like it was a lifetime ago, in others it feels like yesterday.  I do try not to talk about it too much, but sometimes I can’t help it.  1 in 9 Canadian women will get breast cancer in their lifetime, and knowing that statistic, I look at all the women I work with and wonder which one of them it will be.  I still hope daily that my sister and nieces will never have to go through this.

Knowing I have a 20% chance of the cancer coming back, I try and “plan” for it, try and decide what I will do and no matter the scenario, I can’t seem to decide.  If I get it again, some really hard choices may need to be made.  If I was told today I would have to go through chemo again, I really don’t think I could do it.

One of my bosses commented the other day about how long my hair had gotten.  And it has. Losing my hair was one of the most devastating things to happen to me in my life and I don’t know if I will ever get my hair cut again.  I cut my bangs, but the rest of it has not been touched by scissors since I had it trimmed when it was about an inch long.  It’s been close to 4 years since I was diagnosed and a lot has changed since my treatment finished with radiation in March of 2012.  I know I am not the same person, there is no way I could be.

Having breast cancer doesn’t seem to be something I can just “put behind me” and carry on as if it never happened.

I got my letter from the BC Cancer Agency after I got my phone call from them  basically repeating that I don’t have the breast cancer gene.   The letter says in part:
“The pattern of breast cancer in Connie’s family remains consistent with an inherited or familial pre-disposition; thus, an increased susceptibility for breast cancer cannot be ruled out for her and her family members.  We encouraged Connie to remain in touch with us over time to learn about any potential updates in testing methods or the availability of any new genetic testing.  Further, updating the Hereditary Cancer Program with any changes in the family history of cancer would contribute to an accurate assessment over time”
Then I got a call from them saying that they’d put my family’s history forward at one of their meetings to see if we’d be possible candidates for more cancer testing, specifically something called Li-Fraumeni syndrome.  It is rare and the genetic counselor said my family doesn’t meet all the criteria but they all agreed there was something up with our genes.  They will start with my mom because she’s had breast cancer twice.  If she has it they’ll start testing the rest of us.   I’m finding it all fascinating in a morbid sort of way.  Part of me is hoping we carry the gene because it would explain why so many of us have had cancer.  And if we do carry it then it’s possible we can help advance the research and treatment somehow.  I would do about anything to stop someone else having to go through what I did.
For a while I did carry the feeling that if I’d gotten checked out sooner,  maybe I wouldn’t have had cancer.  I know, I know, I couldn’t have ever stopped it from happening but the mind is a funny thing.  Going to the Hereditary Clinic and talking to them and actually seeing on paper how many of my family members have had cancer made me see that I didn’t have a choice in all this.  Like the counselor said to me at one point, it probably wasn’t a matter of if I got cancer, but when.
It’s been a year and a half since I was diagnosed but it still feels so close.   It still consumes parts of my days.  I try to not talk about it or make reference to it but it’s always in my face.  And trying to ignore it just doesn’t always make sense.  It happened to me.  It took over my life for the better part of a year.  That isn’t something I’m likely to forget.  I think I’m now understanding what it means to be a cancer survivor.

I had an appointment with my cancer oncologist today.  He was running behind as usual and I waited for 40 minutes.  I ended up sitting beside this little old lady that talked incessantly.   I know it was nerves on her part.  She was there alone and this was her first chemo treatment but her second bout with cancer.  I just kept saying uh huh which seemed to keep her happy.  I personally, was not in a talkative mood.
He did a cursory check of my chest and lymph nodes.  I’m all good.  He asked how it was all going and I told him about the night sweats and weight gain.  He asked how I would feel about living with it all for another 6 months.  oh happy day 😦  I just told him I catch up on my sleep on the weekends.  He may put me on a different hormone blocker in a year.  Hopefully it will allow me to sleep for longer than I am right now.  Waking up at 4 or 5 because I’m soaking wet and freezing cold really sucks.
I was in tears by the time I got to the reception desk to make my next appointment.  For June of next year.  I’m not sure why it’s still so traumatic. I was shaking sitting there waiting for my appointment, and one really odd thing is my right hand started aching like it did while they were feeding me the chemo drugs.  There was a time when I was in the middle of chemo when I wished my brain worked properly.  Going back there today, I wish it still didn’t.

So I go see the oncologist next week for my 1 year checkup.  On the 20th it will be 1 year since my last chemo treatment.  A year but a lot of days it still feels like last week.  I’m still triggered by things, smells mostly that take me back to then.  The memory of it all isn’t fading as fast as I’d like.  For some reason, even though I ended up with a really good burn from it, the radiation paled in comparison to the chemo.
I’ve come to terms with the fact that my body will never be the same, and that was really tough.  Even tho nothing that happened was a surprise, knowing it wasn’t a choice made it more difficult to deal with.  I’m proud of myself really.  There are so many ways I could have used having cancer to play on people’s sympathies but I couldn’t do that.  I could have taken more time off from work but I couldn’t do that either.  I was tempted a few times to play the ‘cancer card’ but I didn’t do that either.   Having cancer was just something that I had to get through.
Granted, I complain about my knees.  I think they are as good as they’re going to get, mostly I can cover up how bad they still are.  I can at least deal with them now.  And my ‘frozen shoulder’ is almost thawed out 🙂  Only in some circumstances does it still bother me.  The weight gain?  I do feel fat no matter what anyone says.  But whatever.  THAT isn’t in my control yet, the Tamoxifen is taking that over.  My hair is still too short for my liking but it’s growing back.  I like the curl and am used to the colour being different.
In a few months I will get training so I can be a phone volunteer for other people who will go through what I have and just need to talk.  I am so glad I had the people around me that I did.  They all made it just that much easier.  Even the people I work for and with were incredibly helpful and compassionate.  I need to pay it all forward and being a volunteer will do that for me.
I’m not there yet.  But I will be.

I got the results today for my genetic testing of the BRCA1 and BRCA2 gene.  The BC Cancer Agency called me yesterday to make an appointment to give me the results.  They generally do it over the phone.  I had a full day of waiting.  So anyway, I don’t carry those genes.
There’s the good news.
She did say, just like the first geneticist I saw, that there is obviously some factor in my family, be it a gene they haven’t isolated or even some environmental factor that is causing the breast cancer.  She said there was far too many cases of it in my family for it to be just chance.  If I’d had the genes, it would have increased the odds of other female family members getting cancer.  That’s not to say that the odds aren’t high for them as it is, but talking to the geneticist, is sounded like the genes would have almost sealed their fate.  Like I said, it was good news.
Because of the high incidents of it, and because an aunt and I were both diagnosed premenopausal, both of us at the age of 47, that my nieces and probably anyone else, can get a mammogram at the age of 37 with a referral rather than having to wait until their 40’s.
She also suggested I keep in touch with them, and that if they can isolate any other factors, they can test me for them.  I’m all for that.  Anything I can do to help promote diagnoses or help isolate factors or genes or whatever.
This does raise more questions for me.  Part of me was kind of wishing I tested positive, then I could blame getting breast cancer on something.  But now what?  Something caused this.  Something caused all these women in my family to get breast cancer.  I would really like to know what it is.  I also hope that by some small miracle, I am the last one.  I really don’t want to see any more of us go through this.

So I still have some things around that remind me of what I went through.  Don’t get me wrong here, I’m a pack-rat of sorts and tend to hang on to things a lot longer than needed but this stuff would be so easy to toss out and toss the memories them.  I’ve gotten rid of most of the reminders like the drugs I had to take.  Took those to the pharmacy the other week so they could dispose of them.  I’ve put away all the extra bandaging I had.  I only need to see it if I get a really bad cut or have more surgery(not planning on it!).
On my bathtub is a bottle with the remainder of the special soap I needed to use for my last surgery.  It’s a very small bottle, but I see it every time I step into the tub.  I’ve kept 2 of the hospital bands I wore while I was in the hospital.    They’re on my night stand.  I see them every night when I go to bed.  I don’t see them in the morning because it’s too dark  in my bedroom.   It’s not like I need any reminders.  I am reminded every time I look in the mirror at my short hair, every morning when I take my Tamoxifen, every time I walk up a set of stairs and my knees still want to give out, every time I get dressed.
For the most part I think I’ve been really good about ‘getting over it’.  I try not to talk about what happened unless I’m asked.  I can look normal now that my hair is longer and people think it’s just the style I chose.  I have my foobs that make me look like I have a bust.  And the days I get scared that the cancer will come back or really depressed because my life changed a lot more than I anticipated, I wait till I get home to have a good cry.
Take yesterday for example.  I went Christmas shopping and happened past one of my favorite underthings stores.  They were having a sale so I went in and made some purchases.  At the till she was pushing for me to buy a bra.  I said no thank you  twice.  The third time she pushed I gave up and told her I’d had a double mastectomy, no point in buying one of the pretty bras when I can’t wear them anymore.  She was really apologetic after that and gave me a discount that I should have spend more money to get.  I just wanted to have a ‘normal’ day.
I remember mentioning I’d read somewhere that the time it takes to get over this is the same as the time it takes to go through it.  I had one month of knowing it was cancer then 8 months of surgeries and treatment.  The end of this month will be 8 months, the end of December will be the extra one.  Way I see it, I should be absolutely fine by the time 2013 rolls around.  I’ll throw the reminders out for the new year.

I was recently asked by a reader of my blog if I’d be willing to post something from a caregiver.  My answer was yes!  I think it’s important to show all sides of cancer.  Not just what I went through, but what those around me went through.  This man’s wife doesn’t have breast cancer, but another rare form of cancer.  Regardless, cancer is cancer and the fallout is all the same, and the people around the cancer patient suffer as well.  Sometimes their stories are more important than ours.

This is what he wrote:

Caregiving for a Cancer Patient – How My Wife’s Diagnosis Changed Our Lives

My wife has often said that she doesn’t understand what it was like for me after we learned of her mesothelioma diagnosis.  I have only really discussed this openly with her on one occasion and with this I hope to share more of what it was like for me.

Three months before she had been diagnosed with mesothelioma she had given birth to our first and only child, Lily.  We went from being blissful, happy parents to a period of fear and uncertainty.  I can remember the day the doctors broke the news of the mesothelioma diagnosis to us. I remember looking at my teary-eyed wife wondering, “How will we ever make it through this?”

I was feeling really overwhelmed by the news and I was really on the verge of completely breaking down until the doctors brought me back to reality with questions about the treatment she would be receiving.  This would be the first round of difficult medical decisions we would have to make regarding my wife’s health.

I was full of rage, fear and resentment when I first learned of the news.  I didn’t really know how to properly control my angry outburst, and at times, I communicated with others using profane language.  I eventually learned how to better control my emotions.  I realized I had to remain strong for my wife and daughter because they were depending on me to be at my best.  I had my moments, but I was always careful to maintain my composure when around my wife.  I never wanted her to see just how frightened I was.  I needed to be that rock for her.

Right after the diagnosis there were days where I felt like I would never be able to get anything done.  I had to balance parenthood with work and arranging care for my wife.  I was initially overwhelmed by it all but I soon learned to prioritize and focus on the most important tasks.  I also learned to accept the help from friends and family members who were there for us during our time of need.  We were very blessed to have so many people offering us support and help during that time.  Truthfully, I don’t know how we would have made it through this tough time without the support.  Even with all of the support we received, I still felt stressed out and overwhelmed with responsibilities at times.

There was a really stressful period that stood out to me most looking back.  It was directly following her surgery in Boston.  After the surgery my wife flew to South Dakota to recover at her parents’ home.  Lily had been staying with her parents during the time of her surgery and my wife stayed there until she recovered from the surgery and prepared for her next round of mesothelioma treatment. During those two months I was only able to see them once.

One Friday after finishing up at work, I hit the road for an 11-hour drive to see my family in a snowstorm.  Along the way, I pulled over to grab a few hours of sleep and wait for the roads to be cleared.  When I finally arrived at her parents’ home that Saturday morning, I was really exhausted.  I spent the remainder of that day with them.  After getting more time with them on Sunday morning, I was back on the road to be home in time enough to get rest before work on Monday morning.

While it was really difficult for me to be away from sick wife and young daughter, I never really see it as a loss.  I made the best choice for my family.  I knew that there was no way that I could really be there for my young daughter and work full time during that period.  I don’t regret any of the decisions I had to make during that time.  I understand that I did what I needed to do during that tough period of time.  The cancer diagnosis forced us to make really tough choices, but I took comfort in the fact we had some control in this otherwise vulnerable position.

If I learned anything during this time it was to be grateful and always accept the help offered from family members and friends.  I take comfort in the fact that I was able to have some control during this tough and challenging time.

It’s been just about 10 months since my last chemo, 7 since my last radiation.  Today I had to make 2 trips to my car to get my groceries in the poring rain.  My knees didn’t bother me this time and the rain can’t destroy my hairdo seeing as how it’s so short.  Both pluses at this point.
A few months ago I was afraid my knees would never recover.  They’re still not back to normal but at least now I can walk the entire grocery store without feeling like they’re going to give out and the aching doesn’t happen often anymore.  I’ll take it if this is as good as it gets.  I was never planning on running a marathon anyways.
Now when I look in the mirror I do recognize me, but I think it’s because my hair is growing.  I can finally cover my ears with it.  My bangs are still a little short but at least now when I see me, I don’t want to cry.  I just get pissed off that my hair looks just as short today as it did yesterday.  I don’t think I look like a cancer patient anymore and I’m loving the curls.  Popular vote says I keep my hair short but MY vote is to have my long hair back.
There are still lingering little things from this whole cancer journey that nag me and remind me of what I’ve been through.   Like the distinct ridges that were on my toenails, 4 of them, one for each chemo treatment it seems, have almost completely grown out.   Like my feet always feeling swollen even though they aren’t and the tingling ring and pinky fingers of both hands.  I’m sure this is the nerve damage they told me about from the chemo, but it’s minor compared to what it could have been.  And sometimes my joints ache really bad, especially my hands and knees.
The feet, usually when I’ve been sitting for a while, they feel like volleyballs and combined with the seized up knees,  I’m sure I look like a 100 year old lady the first few steps I take.  They don’t really hurt but that would be the word to describe the feeling.  Big round balls I need to get used to walking on.  The tingling in my left hand is usually worse than my right but it’s constant and sometimes my hands and fingers still curl into my body when they’re feeling especially bad.  My shoulder still isn’t normal and there’s some things, like taking a t-shirt off, that takes me forever because it hurts to lift my arm above my head or behind my back.  I’m just glad it’s not my left shoulder, being left-handed and all.
I’m still not sleeping.  Let me rephrase that.  I’m not sleeping through the night.  I get 2 maybe 3 hours of sleep in a row before I wake up.  And I wake up right after or right before a hot flash.  So not only am I not sleeping normally but I get to feel either all hot and sweaty or soaking wet and freezing cold for most of the night.  I’ve been  going to bed fairly early, 9:30-ish because usually by 4:30 or 5am I’m so done with it all that I get up.  I tend to take lots of naps on the weekends to try and catch up and not feel so tired and fatigued when Monday rolls around.
I call these ‘little things’ because unless you know me, and/or I’ve said something, you’d never know that I’m dealing with them.  I can, for the most part, hide them.  The big things, the continual fatigue, the extremely sore joints, the chemo brain, are over and done with.
I read someplace that the recovery from all this is about how long it all took in the first place.  For the most part, I guess it’s true.  I don’t feel sickly anymore and I don’t think I look sick anymore either.  The ‘stoopid’ chemo brain has only shown up a couple of times in the last couple of months.  I don’t feel like I need a cane to walk or a handicap parking tag to go shopping anymore.  But I am still fully aware and reminded daily of what happened.  It all could have been so much worse.  I am one of the lucky ones.