Category Archives: My Story

Meet Ned

I need to admit something.  There’s someone else in my life besides Jeremy.  His name is NED.  I met NED right around the time they removed my breasts.  In fact, it was my surgeon who introduced me to NED.  She was ecstatic, she thought we’d be a hit from the very start.  And she was right, I liked him.  He was handsome and clean.  I like clean.  At first I felt really relieved to meet NED.  I had this image in my mind of what NED would be like, perfect actually…. absolutely perfect.  I figured NED and I could go on living together and we’d be one big happy family.  I figured Jeremy would get used to this other person in my life.  I like NED and I figured he would too.

But after a while I realized that just like Jeremy, NED comes with his own issues.  I mean….you know, he looks clean, he wasn’t fat or anything like that, he fit “within the margins” of what a good-looking person should look like, but then he got kind of high maintenance on us.  For example, we’d just be going along alright, everyone getting along and he’d make a really big issue out of nothing.  He’d insist it was a problem and we’d have to stop everything and focus on NED.  Like he was the only one in our family.  Jeremy would take it in stride, but I’d get worked up.  Sure, I’d try to look cool and collected, but NED really was making me mad and sad all at the same time.  He can be very selfish sometimes.

Then sometimes NED would be so great we’d just forget about him.  We’d forget even that he was a part of the family.  We’d get going in the busyness of life and forget how great NED actually was and how much we liked having him around.  Sometimes we would get irritated with each other or we’d just plain ignore NED and yell at each other.  We really wanted NED to be a reminder of how much people matter, family matters, but sometimes he’d be so quiet we’d just plain forget.

NED was always great about accompanying me to all my doctor appointments.  Even after my plastic surgery and my little nip/tucks, he would remind me he was still here.  The doctor would come out of surgery and say something nice about NED like “so glad to see NED in surgery.”  This always made me happy. 

Sometimes I would get scared I lost NED, if he left for a little while I got nervous, but he never really actually left me.  After my scans or procedures, or little cancer scares, handsome NED would pop his head up over the scan machine and say “boo! you thought I was gone, didn’t you!”  And I’d laugh and give NED a hug.  Sometimes I’d even cry when I’d see NED.  It would make me so scared when I thought he was gone.

The kids are a little confused by NED, but they really don’t fully understand why he needs to be here.  Cancer was confusing to them too.  It’s better this way I think.  I don’t really want them to fully understand just yet.  Sometimes they ask me questions like “Why do you have to have cancer mommy?”  I remind them I don’t have cancer because NED came to live with us instead.  It usually resolves their curiosity until the next time they see me getting in the shower or changing my clothes and I have to remind them again why NED is here.

The truth is, Jeremy and I are best friends.  We’re inseparable.  When I want to share something cool that happened to me during the day, I think of Jeremy.  When I want someone to comfort me when I’m sad, I want Jeremy.  But I’m quite fond of NED.  I think NED is an important part of my life.  He’s not always easy to live with, but I’d prefer his moody nature, than to live without him.

So after two years with NED, we’ve decided he can stay, and we really hope and pray he decides to stick around too.

Here I am before we ever imagined NED coming in to our lives. I think if you would have told me about NED then I would have laughed at you!

 

Here I am right before NED moved in. If you really want to know how I know this....a. the saggy normal breasts. b. I would not be wearing this shirt post-mastectomy and c. the bald head stuble.

 

Here I am cuddling with Elijah. You can tell I enjoy having NED around. I think my face looks happier and healthier.

 

Here I am celebrating my new breasts with Jeremy and NED. Do I look happy or what? This is 5 days post-DIEP and yes, you do see a bit of cleavage!

Here I am leaning on NED. It's nice to feel somewhat normal again.

 

(NED is an abbreviation for No Evidence of Disease.  This is the term they give my cancer status.  I hope NED sticks around, how about you?)

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Dazed

I wasn’t blogging much early in my diagnosis.  In fact, I didn’t officially start my blog till almost a month after diagnosis.  Sometimes I feel a need to go back and write down what I remember from the early days.  For my kids maybe?  So I remember how far I’ve come?  I don’t know.  Maybe because I really don’t want to ever forget.   Amazingly enough I don’t.  It’s a memory of weakness and of strength, and everything in between.  It marked the beginning of the hardest journey of my life thus far.  And so, it is forever a part of me.

I remember that it was a Monday.  I had my ultrasound on the Thursday before and was sent immediately over to the surgeon’s for her to dig around for an abscess.  We were all sure it was a bad infection since I was breastfeeding and it looked like mastitis.  I sincerely think we all wanted to find an abcess at this point and I remember Dr. Kalanowski digging for a while.  I laugh now at thinking how horrible it was that I had this little hole in my breast.  Little did I know she would be removing them completely less than 6 months later.  She did the biopsy even though we were SURE it wasn’t cancer.  In fact, she really wanted me to see an infectious disease specialist because it was probably something weird and strange and totally treatable.  Totally X-files or House worthy, I was sure of it.

So I waited over the weekend.  I remember them telling me I needed to stop breastfeeding on that side.  Which I did… not.  I am not always the most agreeable patient.  I actually called my midwife about this and when she told me if it was cancerI could be passing the cancer cells on to Elijah I became very agreeable.  Yikes!  And she also said this “Jen, you have no history of reoccurring mastitis.”  This is when it hit me hard.  THEY REALLY THINK I HAVE CANCER!  And I quit breastfeeding Elijah on that side.  (and just for the record there has never been a documented case of a baby getting cancer through breastmilk and they are pretty sure any cancer cells would burn off from the stomch acid.  And thank goodness for that info because breastfeeding is the only thing I felt like I was doing 100% right as a mom and I’ll be damned if cancer can take that from me as well…lol!)

So the call came around 12:15 pm 0n Monday, February 4th.  I think some people have this feeling that telling someone over the phone that they have cancer is pretty cold, but I don’t really think there’s any good way to tell someone they have cancer.  The optimal situation would be face to face, but if my surgeon had said, “you need to come in to the office,” I would have known right there and then that it was bad news.  So what could she do.  She had to do it over the phone.  I think I yelled obscenities at her….just kidding…actually, this is where it gets fuzzy.  I really think all I said was like “oh” or something really profound like that.  I remember her then telling me I needed to come in so we could talk about it and she could close me up because there was no sense leaving me open hoping for a crazy X-files infection anymore.

Here are some funny little things that I remember…..I was making macaroni and cheese for Meleah and Elijah and I think I called Jeremy because I remember him getting home quicker than ever before.  And I remember crying over the macaroni and telling Meleah how sorry I was and she had this funny little nervous laugh like “what the heck is going on mom!”  I think I just told her I was I was really sad about something and to go back to watching T.V.

And when Jeremy got home all I could say was “I’m so sorry” over and over again because I knew this would be hell for him and when you first hear the words “it’s cancer,” all you can think is “I’m going to die,” and since I had a few days to browse the internet because someone had accidentally muttered the words INFLAMMATORY breast cancer, not just breast cancer, I knew I was in trouble because none of the IBC info is really up to date and so the statistics look downright grim. 

And that’s how it was.  This is the first recollections I have of my diagnosis.  It’s a blur after that for about two weeks.  Nothing but a hazy fog.  I walked around in a complete daze and threw up a few times before I caught my bearings.

My Story (Chapter 1)

I have realized, that for whatever reason, I did not post much in the first month after I was diagnosed.  I think I was in shock.  I think I was also a bit timid about blogging.  Sometimes I’d like to just forget those early days of diagnosis, and then other times I think….well, maybe I should write down what I remember before I totally forget.  Then someday when my kids really want to know the details I can refer to my written account.

I’m going to write in segments because if I write it all tonight this post will be WAY too long.  I’ll just write a little bit everyday until I feel like I’ve gotten it all covered.

I vaguely remember the first time I thought I had a plugged duct.  I remember walking around in a Baby GAP, it must have been around Thanksgiving, and we were Christmas shopping.   As a breastfeeding mom I would quite often push on my breast to feel which side I needed to nurse on.  I sometimes would forget I was in public and do this.  I remember pushing on my left breast and thinking….”boy, this plugged duct is annoying.”  I remember thinking I was leaking too because it felt hot and moist on that side….which isn’t all that uncommon for a breastfeeding mom except that Elijah was about 10 months and I really wasn’t leaking very much at that point.  I had had many plugged ducts and usually I would just nurse extra on that side and it would resolve itself.  I had actually had a mole removed off my left side a month or so previously so I thought I had somehow overcompensated and not fed enough on the right side.  I figured it would resolve ina few days.

Around Thanksgiving I mentioned to my cousin who is a physicians assistant that I had a plugged duct that was not resolving and it was making me frustrated.  By this time the breast was warm, had some reddish patches and had a weird lumpiness to it.  Very much like a plugged duct but not yet mastitis because the rest of my body did not have a fever. 

I called to my midwife’s office to see if I could get in.  I wanted to go to a woman.  I didn’t realize there was actually a female doctor I could see at this office since I had only gone to the midwives.  The receptionist told me there was nothing before Christmas.  So I decided to go to my family doctor.  I figured if I was going to show a man my breast I would at least go to someone I knew and felt comfortable with.  We agreed it looked like a plugged duct.  I knew all the tricks to getting a plugged duct out…..warm compress, warm showers, massage.  I left more determined to get the plug out. 

Over Christmas break I traveled to Atlanta to visit my sister, who is a La Leche League Leader and lactation consultant by the way.  She mentioned trying ibuprofin to reduce swelling.  Over break I would scan web sites reading about mastitis and plugged ducts.  I couldn’t figure out why my breast had a fever and nothing else did if it was mastitis.  By now my breast was hot, red and the whole breast was swollen.  I could see the pores in my breast were making this pitted texture.  I also had some of the classic streaking symptoms of mastitis. 

On one web site it mentioned a trick to getting out a plugged duct.  If you took boiling water and put a little in the bottom of a glass, then put your breast in the glass, as it cooled it would cause a suction and this would pull the plug out.  I tried this several times, but no plug came out.  Not only that but it is painful.  I don’t recommend it!  I also searched my nipple for blisters as described on some sites, but found nothing. 

When I returned home I once again called my midwife.  They still couldn’t get me in for several weeks.   I thought….”well by then it will be gone”.  I’d never had a plugged duct last very long so instead I asked for some suggestions from the nurse.  (You’d think after six weeks it might occur to me that it was not going to resolve on its own!)  She called back and said the midwife recommended lecithin and echenacia.  So I headed off to the local health food store and started taking both of them. 

During that time I was also with some friends and one of them mentioned that she had struggled with some plugged ducts and recommended some homeopathics.  So I went back to the local health food store and got them.

After taking these things for a week or so I thought it was looking a bit better.  I took one of my children to see our family doctor and he asked how the plugged duct was doing and I told him it was still there but I thought it was improving.  I think if  I had said it still was there he would have taken a look, but since I thought it had signs of improving he didn’t press the issue.

To be continued…..