Take that, cancer!

Its done! Chemo is done!!

I had my last treatment on July 17th. Unfortunately the fatigue is cumulative with each round, so even though I did not have that evil Neulasta shot - so no bone pain - I am still dealing with some fatigue on day 14. (normally its gone by day 10) I had one day that I was feeling pretty good, and even posted something on Facebook about being back. Apparently it was caffeine talking. A couple days later my counts dropped further and I got sick. Today my neutrophils are at 400. I've been on a broad spectrum oran antibiotic for a week and will continue for a few more days. Without that I would be in the hospital on IV antibiotics.

Anyway, even though I'm still dealing with some side effects, chemo is done, and that is a huge thing! Clearly worth celebrating!

I have spent the last four months researching all of my option related to mastectomy and reconstruction while taking into consideration the risks associated with each decision.  I was, and still am, happy with my own boobs. I just don't want them to kill me. I have a 1/4 chance of getting cancer again if I leave them alone. I don't want cancer again.

Today I met with my plastic surgeon, Dr. L. I have used her in the past and knew she did breast reconstruction. She did her plastics training at Mayo clinic, and she is awesome! I have to say, my boobs are really the only part of me that I truly am happy with. I am NOT happy to be faced with the decision of whether or not to do a mastectomy.

First Dr. L.  looked at the size and shape of my breasts and the current scars from my lumpectomy and lymph node biopsies. Most women want to have a shape similar to their natural breasts. Based on where my scars are she thinks I am a good candidate for nipple sparing surgery. This is a big deal, because it means the end result is much closer to a natural breast. I really want to be comfortable looking at my own body, much less my husband. It is impossible to know until the doctors are in surgery and can take a good look at the nipple and surrounding tissue, but for now it looks like a good option.

Because there isn't cancerous tissue involved I can have reconstruction at the same time as mastectomy. That means as soon as the breast tissue is removed the doctor would place a tissue expander under the muscle of the chest wall. This would be left in for several months and slowly expanded through a port similar to the port in my chest. Once they're the right size (similar to my current natural size) I would have another out-patient surgery to exchange the expanders for implants.

Next we talked about the type of implants she recommends for me and why. I have been researching implants for months now. Who knew there were so many? I thought I had decided I would prefer a cohesive gel implant, but once I got to ask some questions and see them for myself I don't think so. I was able to feel all the different types of implants and see how they would look in position.  Dr. L. also explained that at the top of the chest there is often a cavity after mastectomy. She uses fat grafting to fill in that area.

Then we discussed timing of surgery. If I need to have radiation it is better to have the mastectomy done before radiation. After radiation nipple sparing is not an option. After radiation the skin will loose all its elasticity. The loss of elasticity means I would need to have a dorsal flap procedure done to have enough skin to create a breast. There is also another type of flap procedure, using abdominal tissue, but I am not a candidate for that.

Needless to say, I would prefer not to have the flap procedure done. More scaring. More risk of problems. Having radiation after mastectomy comes with its on set of problems an is certainly an issue to keep in mind, and I still need to find out if I can go without radiation if I'm having a mastectomy and have already had chemo.

I left feeling like I was, for once, doing something that was proactive instead of reactive. Chemo is reactive. Radiation is reactive. Mastectomy to prevent the recurrence of breast cancer in one breast, or a new diagnosis in the other is a proactive approach. Next week I will meet with my oncologist as well as my other surgeon (He and Dr. L would work together to do my mastectomy and reconstruction.)

There is  no way to 100% eliminate all risk of breast cancer recurrence or to eliminate the risk of developing cancer in the other breast, but mastectomy is as close to zero as a woman can get. 

Treatment Update

Yesterday and today were days 1&2 of my first round of chemo. One down, three to go! A lot of this post is written for those coming behind me, so a lot of details you may want to skip over. I won't hold it against you. ;-)

Dean came with me which was very comforting for my first round. He was only staying for a couple of hours, then going home to get kids off buses, then back to pick me up. My friend Stephanie watched Audrey for us (Thanks Stephanie!) so he could be there for this. It was recommended I have a driver for the first treatment since there is no way to predict how I would react.

First thing was height and weight. The drugs are dosed by weight, so the more you weight, the more drugs you get. My weight went up. GAH!

The room was super cold, but they had heated blankets they were passing around to everyone.

Next they had to access my port. Mine was full of clots so it took a some gymnastics on my part, and a lot of "turn your head and cough" to get the lines into the right position that they could "blast the line open" (nurses words). Finally they were able to get it all flushed out.

The first bag of solution was all my steroids and anti-nausea drugs. That takes about an hour. Next came the Taxotere. This drug has a high incidence of allergic reaction so they have a bag of benedryl hanging "just in case" on the pole as well. About 1/2 way through it was time for Dean to go pick up Audrey and meet the kids buses. About 3/4 of the way through I started having hot flashes. I didn't really think much off it, but tossed my blankets aside. "Wow. Guess they turned the AC off" I commented to the nurse as she was bringing snacks around. That caused a flurry of activity as the nurses came over to look at my face, "Nope. She doesn't look flushed." "No, I don't think she's reacting. Just a hot flash?" "Yes, I think just a hot flash."

I have no doubt that if I did have an allergic reaction, these ladies would be all over it! LOL

Selfie from the chemo chair! LOL I love the necklace I'm wearing. Angela made it for me for Mother's Day and I think its beautiful!

Next up was the bag of Cytoxan. This was a one hour non-event.

When everything was done they flushed my port with saline and heparin and I was free to leave. They handed me a list of visits I have between now and my next treatment, which were a total surprise to me! I will need to reschedule the times for most of them.

I went down to the lobby to wait for Dean and was talking to someone on the phone, when suddenly it was as if someone punched me in the belly. I knew I didn't have long to find a bathroom! Fortunately there was one closeby and that is where I stayed until Dean and the kids arrived. Oh, it was a long ride home! But my lovey, Dean, had already filled my prescription meds so the moment I got home I took an anti-nausea pill and went to bed. I slept for a couple of hours and when I woke up I was able to eat dinner and keep it down. Oddly, I'm craving proteins, when I normally crave carbs! This morning I started back to my isagenix vitamins and a few other things so I can keep good stuff in my body.

This afternoon I had to do back for my Neulasta injection. This helps increase white cell production so counts don't drop, which can land a person in the hospital. My clinic encourages taking Claritin to help combat the bone pain that is the main side effect of Neulasta. This pain can start within minutes or days. It can be non-exisitant, mild to very severe, but there is no way to predict, of course!

Today I've kept taking my anti-nausea meds on schedule and have had only waves. I also take Decadron today and tomorrow which does several things. I have been really sleepy but I think its from the nausea meds and not so much the chemo. I've slept 4 1/2 -5 hours today and still ready for a full night sleep!

Thats it for now! So far so good. I'm told I could stay like this - mostly side effect free - or that tomorrow I could get nailed really hard. I wish there were a way to know. In the meantime, one round down, three to go! 

I'm not brave

Over the last couple of months many people have said to me, "You're so brave."

No. No I am not brave. What about being given a diagnosis of cancer makes me brave? I have no choice in whether or not I choose to fight this disease. That doesn't make me brave. It makes me a patient.

Someone who is brave steps into a situation no matter  how scary it is, like running into a burning building to save a life. Am I determined and strong? Yes, I think I am, about a lot of things. But I am taking this disease by the horns not because I like the thrill, but to keep it from impaling me! It is absolutely possible to have a positive attitude about things while simultaneously being scared to death!

I am not a survivor yet either. A survivor is someone who has come through a difficult battle and lived to tell about it. Right now I am a warrior. I am a fighter. I am in active battle with a horrible disease that kills people. When I ring that symbolic bell in honor of my last chemo treatment, when I can say there is no evidence of disease inside me, THEN I become a survivor.

My tshirt for today

Kick'in A**

Saturday night I had a little party at my house. Dean and Axel were out of town for fishing opener (which is, by the way, an official holiday in Minnesota) so I figured it was a good time for a girls night at our place! We had a good time hanging out and just visiting with one another. I'm so thankful for the friends I have who have been so supportive of me (us!) as we embark on a really difficult journey.

Of course, I didn't think to take pictures until a few people had already gone home! I'll blame that on the Mojito.

Kathie and Nell

Rose and Tyler (who was only allowed to join us after he got the kids to bed.) 

Barb

Earlier in the week when I thought to have this party,  I also decided to shave my head. I wanted time to get used to seeing myself without hair as well as the odd lumps and bumps I was pretty sure were hiding under there. That, and I like doing things *my* way, not cancer or Chemo's way. In the end it just didn't feel right to have my friends do it, though I know they were jumping at the chance! LOL But later, when the house was quiet, I closed myself in the bathroom and did it myself.


(edited to add: I kept looking at the hair coming off my head because I was STUNNED how much gray was in there!! Holy crap!)

Now, this may be a little odd to say, and Dean may not agree, but I think I look better without hair. And to be honest, I'm kind of liking whole "wash and wear" part. However, I reserve the right to change my mind when the stubble falls out and I'm left bald as a cue ball!

Thanks again to everyone who came, or who wanted to come but couldn't make it, for holding my hand as I take the first few steps on what is, so far, the most difficult journey of my life.

Just an Ordinary Day

It has taken a really long time, but I have finally realized my "normal" is not like anyone else's normal. It was pretty normal our life was just about raising five kids with Down syndrome. I mean, there are extra curricular activities and school meetings with a few doctors appointments thrown in there. The same things any other parent does. But add cancer to the mix? Yeah, we lost the normal.

Here is what today has looked like for me:

Get the kids up for school, breakfast, dressed, teeth and hair done, yada yada yada. Often after the kids leave I go back to bed for a bit while Dean and Audrey have some daddy/daughter time. Then I take a quick shower before Dean leaves for work.

But today was different. Today I had the pleasure of attending an 8:00 a.m "Chemo Class". Yes, that is right. It was a class to go over all the crappy side effects of chemo, and explain to me just how crappy I will feel during treatment and how to manage those side effects. The nurse conducting the class asked if I was getting a port. I told her no, I wasn't  planning on it because it is only four rounds. "Are you hard to get an IV in?" she asked. Apparently one of the drugs I'm getting causes burns to the skin (as in 2nd degree burns) and if you're a "hard stick" this can really be a problem. Well, the last two times I've needed blood drawn or an IV started the nurses have had a really tough time. Hmmm The nurse took a look at my veins. Because I've had lymph nodes removed in one arm, that only leaves them with the left to use for IV's, and they can't use the ones at the bend in the elbow. That leaves only my left hand and she didn't like the looks of the veins there. So, a port it is. Doggone it. I was hoping to avoid some of these steps! Like another surgery - however minor - to have a port put in. I know in the spectrum of life its not a big deal, it just bothers me it has to be done in the first place. One more step down the road of not having any control over my life. I'm waiting for the hospital to call me back. It looks like that procedure will be done on Monday or Tuesday next week. I did come away from class with a free thermometer. Score!

From there I raced over to Tyler's house because he'll be helping out here this weekend. It sure is nice he is around to help!

My next appointment was with the Fantasia Salon. They specialize in hair loss and wigs (among several other things) I wasn't planning on getting a wig, but my insurance covers it and I figured there would be an occasion or two where I would rather have hair than wear a hat or go bald. I have a very small head which is flat on the back and am a bit difficult to fit. Of course I am! Surely you have figured out by now that I don't do anything the easy way. …..sigh….. I was a bit shocked at how much hair is on the wig! "Is this how much hair normal people have?" I asked. My hair has gotten so thin that I had forgotten! "This wig has (insert number) hairs per square inch, which is the average amount for women." Wow! I might have half that amount of hair. Now I'm wondering, what if I like the wigs better than my new hair after chemo? I might just keep my head shaved and buy nice wigs!

This is it. This is my new normal. Buy wigs, raise some kids, toss some surgeries into the mix here and there, attend some school meetings, get some chemo.

Ain't life grand????

Treatment Plan

Finally there is a plan. Finally. I'm so tired of waiting. Even though I'm going to be pumping my body full of poison, the faster we get moving the faster it's all behind me!

I thought my first treatment would be this week, but apparently I have to go to "chemo class" first. That will be on Friday, May 9th.

I wanted to time my chemo so that I'm at my worst feeling when I have help, which would be on the weekends. That would put my treatments on Thursdays, with the first one occurring on May 15th. (though its possible I will change this to Weds. I'm not sure which is better)

Day 1:
Taxotere
Cytoxan
Some steroids (Decadron? I forget now)

Day 2:
Neulasta injection

Day 21, repeat the steps above.

Four cycles (12 weeks) total.

Thats the plan. Coming up: "When you're nesting for chemo"

Irrational fears and expectations

I went to bed at 8:30 because I just couldn't keep my eyes open any longer. Then Dean came to bed at 11:00 and that was it for sleeping for me. Not because of anything Dean did. Rarely does his movement disturb my sleep. But this time, when I woke up, I remembered I have cancer.

You see, I've been able to pretend I don't have it. Because I wasn't being treated for it, (other than surgery which was a few days of discomfort) I didn't have to deal with it. It was there, but it was in the background. I have enough other things going on in my life that I didn't need hang out "there".

Now that treatment is decided….its different. It's here. It won't be invisible anymore.

Someone asked in the comments of a previous post if I would write about what I'm afraid of so they can pray for that in particular. My fears are completely irrational.

I have to say, I'm not afraid of cancer. The cancer I have is highly curable. I'm only slightly afraid of chemo. I have some very unrealistic expectations about some of the side effects but I'm hanging onto them because if there is a benefit to chemo, they are what I want. I'll take the weight loss. HA! Watch me be one of the people who gain weight while on chemo! Having said that, its not really good to loose weight during chemo because it affects your energy level and immune system. My rational brain knows this. The other side of me doesn't care.

Also, I have really bad hair. The women in my family have this very thick, wavy hair. They all have a lot of it! Mine??? Umm no, I did not get the gene for good  hair. Mine is very thin and brittle and makes me look older. I want better hair and chemo might be my only hope. LOL But, like the weight loss, my hair will probably come back grey, curly, and thinner than it is now. I think I'm going to enjoy getting rid of my bad hair, if even for just a couple of months. I say that now because I'm safe saying it. When my hair is gone and all my ugly scalp bumps and scars are visible I will likely be singing a different tune. If you're here and have been through this yourself (not your mother, or your sister, or your friend. I'm looking for YOUR perspective of your own head, not your perspective of someone else's head.)  Were you bothered by what you discovered had been hidden under your hair?

My other fear is that I've made the wrong choice. That I have some minor infection in me that will take advantage when chemo is knocking down my immune system. My fear is that my chemo plan that is supposed to be relatively short will somehow have some unexpected side effects and kill me. Thats my fear. Its not rational. Its not a realistic fear. But that is my fear.

But you know what? God knows what my fear is. And even though I get a little worked up now and then, I pray and ask him for peace and calm. To remove whatever it is at the moment. I pray for distraction. I pray for energy.

Oh, I have another fear! I'm betting Dean worries about it too. How bitchy I will be once I have my ovaries removed? This is not even an irrational fear. It is realistic.

I'm only slightly worried about the logistics of doing this chemo thing. I have a plan in my head of how it can work with minimal disruptions to our family schedule as possible. (this is me trying to be in control.) Keeping things as normal as possible for our kids is crucial, particularly for Abel. I know we have some great friends and family who are willing to help us out and in the end it will all be sorted out.

So that's it. My fears. Irrational, yes.

I have to tell you, never in my life have I craved sunshine like I am now. It has been raining here for more than two weeks and I can feel myself sinking a bit. I just need sun. I need to sit outside in my chair soaking up the sunshine and I need to watch my kids playing in that sunshine.

I'm debating about starting a separate blog for my cancer journey. Although I wanted to keep our life all together in one place, because cancer is now part of our life at the moment, I don't want people to get tired of coming here because I'm always posting about cancer. How depressing to read about THAT every day when you're coming here to read about the kids! If the sun ever comes out we'll spend all our time outside, which means lots more pictures of the kids, which means something to write about other than cancer. If you have thoughts on this, I'd love to hear them. 

Breast Cancer and choosing treatment

I walked into the oncology clinic and found it hard to resist the urge to turn and walk back out. Why is this even part of my vocabulary? To the left: the waiting room. To the right: patients in chairs getting their chemo. I checked in at the desk, filled out the necessary forms then buried my nose in my phone. I didn't want to look around. Everyone in the waiting room was sick, or waiting for someone who was sick. All these people have cancer? How many people around the world, on any given day, are having chemo?

I should not be here. I don't want to be here. Never in my life have I been in such a depressing waiting room. Wait, yes I have….lets not go there.

I normally have very low blood pressure, around 75/60 is pretty typical for me. But today? 130/90. It made me cry. Why was I crying? Because it was a sign I was letting cancer get to me and I hate that I'm letting it get to me. 

Today I wanted guidance.

I wanted to meet with my oncologist and be told "All your tests say X, and so the treatment will be ….". 

I did get guidance. My doctor was compassionate, caring and exceptionally patient, filling me with information and understanding of all the tests that have been done. 

We know I need to have my ovaries taken out. My cancer is estrogen +, which means estrogen is what feeds it. Most women can take estrogen blocking drugs, like Tamoxifen, to manage that. Unfortunately I can't take that medication. Instead I'll have my ovaries removed. But since there is still estrogen in the body I will take a different drug that is not as strong. I will also have to take drugs to improve my bone density since it causes depletion of calcium, especially being put into instant menopause. 

I am young for this type of cancer. I need to have genetic testing done to make sure I don't have BRCA 1 or 2, which are inherited forms of breast cancer. If I have either of the genes I will have a double mastectomy done. If not, I will leave them alone. Although my breasts are the only feature on me that I actually like, I'm not that attached to them. 

Now for my risk of recurrence. 

Whether or not chemo will affect my risk of recurrence is a coin toss. (read about the Oncotype test here) I'm in that 'intermediate' group of women who scientists don't really know if the benefits of chemo are worth it. The decision of whether or not to fill my body with poison is up to me. 

Because I can't take the estrogen blocker Tamoxifen, my risk of recurrence doubles, putting me somewhere around 25% chance of developing breast cancer again. 

1 in 4. 

Since my original odds were 1 in 8, just like the rest of the world, I have just doubled my risk from the general population. And since I don't really do very well when the odds are not in my favor, I want to treat this as aggressively as possible.

Dean and I have talked, and I have talked with my mom, and we all agree that if I don't do chemo and go on to develop cancer again down the road, I will wish I had done chemo. As it is, I will spend the rest of my life waiting to hear the words "You have cancer" again.

I'm pretty sure this is probably one of the most difficult decisions I've had to make in my life. 

And so it is decided I will start chemo next week. I'm lucky. So far I get to keep my breasts. 

We're dealing with it.

Tomorrow

Those who know me in real life think I'm always seem to have everything under control. That I roll with the punches and move on. There are only three people who ever see me get truly upset: Dean, my sister and my mom. I don't want to say I handle stresses "better" than other people, I just handle them "differently". Yes, I have probably learned some really good coping skills over the years.

I've lived through a lot of stuff, and as a person with control issues I can tell you it is the number one lesson God keeps putting before me. I KNOW…I KNOW God has this. I know he has known I would have cancer since before I even existed, and that he knows my final outcome. He knows when, where and how I will take my last breath. No matter what I do, that story cannot be re-written because it is already written in His breath. And so, when something like "You have cancer" happens, I freak out for a minute but quickly gather my wits and move on. I remind myself,  "He already knows. This is not a surprise to Him, I just need to suck it up and deal with it."

When I get really stressed, my instinct is to sleep for days until the problem goes away. Some people would call this depression. I call it "If I can just sleep until the day of the event, I don't have to spend days worrying about it." Since sleeping all day, every day isn't really an option for me, I instead become very distracted. Nothing keeps my attention longer than a few minutes and I tend to be impulsive. Sometimes I don't realize this is happening until after the fact.

Tomorrow I will be meeting with my oncologist. Together we'll be coming up with my treatment plan that should start in the next week or so. Needless to say my anxiety level has been running very high. Most nights I've gone to bed early to read, the next thing I know my alarm is going off eight hours later. Occasionally I have a night where the anxiety wakes me up and my mind starts spinning with things that need to get done, only I can't do them in the middle of the night. The next morning I'm exhausted and can't get any of those things done!  I keep telling myself, "Just deal with it and move on." Only sometimes I don't know what, exactly, I'm dealing with. I get crabby with myself for being a weenie. God has never stepped away from me, and He certainly isn't going to now, so why the anxiety?

Today a t-shirt appeared in my path. I knew right away I needed it. I'm going to wear it tomorrow to meet with my doctor, to remind myself what I need to do.

What I didn't know, and an update

Just 5 weeks ago, I knew very little about breast cancer.

I knew it killed women, but I also knew some women survived.
I knew there was an inherited form, and that family history is a risk factor.
I knew it was treated with chemotherapy and radiation.

And that, my friends, is all I knew. That is pretty pathetic considering 1 in 8 women will be diagnosed with breast cancer sometime in their life.

ONE IN EIGHT!

You, me, every woman, needs to understand breast cancer. I feel like we're all walking around with a target on our backs, and I didn't zig zag fast enough.

I thought "Breast cancer" is breast cancer. I didn't know there are fourteen different types of breast cancer! I have the most common type: Invasive Ductal Carcinoma, accounting for 80% of all cases of breast cancer, and in the US about 150,000 cases per year are invasive breast cancers.

I didn't know that even though I may have the same type of breast cancer as Susie Q, the genetics of our cancers are very different. This makes our treatment options different, and the list of treatment possibilities is extensive.

I thought, when a person is diagnosed with cancer (any kind) treatment is started immediately. Even Urgently. I had no idea this is absolutely not the case with many types of breast cancer, mine included.

I thought breast cancer meant the woman had to have a mastectomy and chemotherapy. So many women are not only able to keep their breasts now, but they are surviving with their breasts for decades!

I didn't know that cancer is "fed". Cancers are fed by all kinds of different things. My cancer happens to be bed by estrogen and progesterone. (and no, not sugar. And no, don't send me the 'cancer is fed by sugar' stuff anyway because you feel I need some enlightening.)

Here's where I'm at with my cancer:

The last of my tests have finally come back, leaving me more confused than ever. I haven't yet met my oncologist but will on May 1st. At that time we'll go over all of my pathology reports, as well as the results of my Oncotype testing and come up with a treatment plan. I am fortunate enough to fall into a "gray area" group of patients where treatment is pretty much a coin toss as to whether or not chemo is an effective treatment for my cancer, or if my risks are no different if I do radiation only. Leave it to me to have such luck.

I am having a really hard time getting much of anything done in the house. Between dealing with Abel's school issues, and working on getting Audrey's medical appointments completed, and the fact Angela is turning 18 (a birthday which includes a whole stack of paperwork because she will now be a "disabled adult") None of this would be overwhelming to me, except that now I have all my own health issues thrown into the fray. Its all just mentally exhausting, and if I had a hard time getting normal chores done before, now its so much worse. So lots of things are getting done, but not the things right in front of me. I feel a bit inept.

I have been doing a lot of reading and research, talking to other women who have the same type of cancer as me, finding out what they decided for their treatment plan. Now I'm at the point where I just need to walk away. I need to stop reading and stop asking. Next week when I meet with my oncologist I will make a decision and I will not second guess myself. Much. I'm so thankful I have Dean who is so supportive and doesn't want to influence me with what he thinks. "It is your body, and you are the one who has cancer. Whatever you choose to do is what I will support."

I have bad hair. It started thinning when I was in my early 20's. I have a fair amount of gray. If I have to have chemo I want to get better hair out of the deal. This should be a reasonable request, I think. No?

And so, if I'm a bit quiet lately, now you know why. It's not because I'm super busy. Well…I am but I'm not. (if you don't know me personally this may not make sense to you.) For those who have called me with Down syndrome, adoption, or just general parenting related questions, please don't hesitate. I enjoy talking and thinking about something other than cancer. Cancer is not taking over my life.

Do it

If you are a woman, please please please watch this video. (it is not for kids)



Now do it. Every day. Touch yourself. Know your breasts so when there is a change you will recognize it. Don't skip your mammograms. Do you know if I had skipped this mammogram, my journey would have been very different? It could have killed me.

Since my diagnosis several friends have told me they've had mammos done, one that came back with a mass and is waiting her biopsy results.  Two other friends had genetic testing done and one found she carries the BRCA1 gene. Some friends have decided to put it off even longer. This was the exact purpose of sharing my journey. So that others can help themselves. I have given a lot of details because that is what I wanted to find when I was freaking out digging for info. I have so many friends who have said, "I haven't had a mammogram in two years, but I don't have any risk factors, so I'm ok." No! No you are NOT! I have ZERO risk factors. Cancer doesn't discriminate. It doesn't care how old you are, how many kids you have, or if you're a nobel prize winner. Cancer doesn't care.

1 week post op follow up

So, I got all worked up over nothing. Yep. The Oncotype gene test wasn't done. Apparently in pre op my surgeon was just telling me about it, not that they were actually going to do it. If its going to be done my oncologist will be the one to order it.

I am being referred to physical therapy for just a couple of sessions. The lymph node removal under my arm - for which they have to move muscles out of the way - has some slight limited range of motion. Because they messed with the lymph system that puts a SNB patient at risk of lymphedema, so I've been referred to physical therapy for just a few sessions to improve range of motion and get lymphatic massage. (how fun, to get  your underarm massaged. LOL) But, I think this is pretty standard practice with my breast clinic.

Next week I'll be meeting with my oncologist to start setting up my radiation schedule. Discuss what hormone blockers I'll be taking, as well as whether or not I need to have my ovaries removed. I can't take Tamoxifen, which is the estrogen blocker that is most often given so the other option is to remove the ovaries and use a different drug. That and lose weight, because fat stores estrogen and estrogen is what feeds my cancer.

Other than that, all things are good. Incisions look fine. Small infected areas have cleared up without needing antibiotics or anything. Just get it all healed up so I can start radiation. 

The Cancer Coaster

I wanted to go all this week without posting about cancer. I really didn't want to think about cancer at all, except that's hard because certain parts of my boob remind me several times per day that it exists. Since I'm writing about this journey for more than just myself, I think its important to acknowledge this aspect of cancer.

Cancer causes crazy.

Cray cray.

Crazy pants.

Crazy Crackers.

Yes, cancer causes people to become all of those things. There is no telling when I could go from a sane, rational mother of 5 to Crazy Crackers mom who can't remember what she did eight seconds ago. (and, I'm sorry Noah, I have no clue what I did with your birth certificate that I just saw two days ago. The air ate it. I will get you a new copy.)

Then there are the strange, "out of body" type fits of irritation that are not like me. I go online and find that other women have described the same things, and I feel slightly better that maybe I'm NOT crazy. Perhaps, just maybe, I'm a little stressed? Its possible.

 Last week while I was still waking up from anesthesia, I found out my lymph nodes were cancer free. This is a major piece of information because it means I don't have to have chemotherapy, just radiation only. Then two days later my surgeon called me at 8:00 pm. He wanted me to have a good, worry-free weekend, so called to tell me that he did, indeed get all the mass out of my breast. (It has clear margins, for those who know the lingo.) I was thrilled. No chemo for me, for sure! YAYAYAY

Tomorrow morning I meet with my surgeon for a one-week follow up, and to go over the final pathology results. I was just getting ready for bed, looking forward to this early appointment because it won't mess up my whole day. And then suddenly I remembered something! Just before surgery when my surgeon came to talk to me, he listed what all they'd be doing in surgery, including that they would be doing an Oncotype DX test that would give them more information about my cancer. I had heard of this test in the breast cancer forums, but didn't really pay a whole lot of attention to it.

Then I had a brilliant idea:

"I should look up this test and see what kind of information it will give me!"

Why why why why why why why do I do this stuff to myself????? Especially when Dean is already in bed for the night so I can't tell him about it. (instead my poor sister gets the late-night messages.)

The Oncotype DX test looks at the cancer cells from the tumor, watches their activity, does some math then determines the likelihood the cancer will return. You can follow the link for all the details if you want, but if you're already bored with my cancer talk, and how I am/am not dealing with things, just know that I need a number below 18.

A number below 18 means I do NOT need chemo. Nope, not at all.

A number above 31 means the benefit of chemo outweigh the risks of the drugs. It will give me extra assurance that my invasive cancer will not return.

But a number between 18-31??? That means indecision. It means I will have to think, and weigh the risk vs benefit factors involved, and decide whether or not I should have chemo. Me. Stand on a teeter totter and decide which end to walk off of.

I hate this roller coaster. Hate. Hate is a strong word, but so is Cancer. I hate cancer. I hate the crazy. I want it to be July and all of this behind me. My birthday is the last week of June. It'll be an awesome birthday!

Stupid Cancer!

Thank you for curing my cancer

This is a hard post to write, because I don't want to sound ungrateful. I have a lot of friends. More than I ever knew, who care about me enough to send me their well wishes, prayers and positive thoughts. Friends who have brought us meals, helped with driving kids, or just generally cared for us. I am so thankful for each and every one of you! Every.single.one. Every text was received with thanks, even when I just didn't have the energy or emotional strength to reply. This cancer thing is overwhelming at first, and I'm still learning how to fit it into my life. Our lives.

When I was diagnosed with cancer I quickly found myself part of a group of people I never really felt the need to surround myself with: Cancer survivors and warriors. They warned me the "cures" would start coming very soon.

I love that you have all cared for me enough to send me information that will cure me. Every natural, holistic treatment, obscure clinics in Bolivia and other countries, teas, oils, nutritional supplements and drugs with questionable legal status. If you sent me a cure, please know I probably had 5 others sent on the same day that contradict the one you just sent me.

Of course, if I just pray enough, my cancer will go away because clearly I don't have enough faith in God right now. If I did, God would heal me without medical intervention.

I cannot even count the number of people who have told me *their* doctor is the best in the business and I should be going to him/her, no matter how far away that doctor is located. I have also lost count the number of people who have suggested I hold off on treatment to see if their 'cure' works first. Then of course there are those who know more than the medical community does about my cancer.

If you love someone who has cancer, please…please…please don't send them your 'cure'. Your loved one is already overwhelmed with information. Ask them if they WANT the information before you start flooding their inbox. Please don't even insinuate they have not done their own research on doctors, and try telling them your doctor is "the best in the business." You're doing it out of love, but telling them they aren't doing enough to take care of themselves. Please do not even suggest that someone delay their treatment to try an un-studied, unregulated treatment. You're asking them to play a very dangerous game with their lives and the future of their family.

Having cancer means making some really tough decisions about treatment, usually with very little time. How aggressive should I be? How many opinions should I get? It is really difficult to not second guess our own decisions with all the pathological and medical information we have. Please know that Dean and I care more about our family than everyone else except God. We will make our decisions accordingly, using scientifically proven treatments that have a long history of curing my type of breast cancer.

Lumpectomy Post Op recovery

Part of my blogging about this cancer journey is for me, but also so that others coming behind me can be prepared. This is the information I looked for that I had a hard time finding.  I'm going to be very honest, and sometimes that may mean more details than you are comfortable with. Guess what? Breast cancer involves talking about things like nipples, breasts, milk ducts, and all things related to them. If you are uncomfortable with those words, please pray you never develop breast cancer.

I have two incisions. One is about 1/2 inch above the nipple and about 4 inches long. The other is near my armpit and about 3 inches long.

The first couple of days the most painful area was where the lymph node biopsies were done, which is near the armpit. The body chooses which are the "sentinel" (or first) lymph nodes to filter fluids from the breast, so when the doctors decide to find those nodes, it means sometimes those first nodes are not right near the surface. No, my first three sentinel nodes were a bit deeper, meaning muscles and stuff needed to be moved.

My chest has been wrapped in a large ace bandage to keep pressure on the area. Yesterday I was able to remove that bandage to shower for the first time. Ummm wow…. That bandage was covering the fact my boob looks like it was pummeled with a baseball bat. It only feels slightly better than that. It also only took me a second to remember what the surgeon told Dean when he was done working on me, "I had to take a bit more tissue than I expected." Umm yeah. Not all things are pointing in the same direction they used to be and…well…divots are for golf courses, not boobs! I'm told some of this will fill in with fluid as I heal. I hope so.

Today, day three after surgery, I'm still *really* tired. I've never been so tired so many days after a surgery. The anesthesia and complimentary drugs must have been a bit different this time, because I'm wiped out! Yes, I have cancer, but this was a very slow-growing cancer that wasn't yet affecting my general health. Maybe its just a combined problem of coming home with Audrey, finding out I have cancer and all that stress, getting the house ready for me to be out of commission for a few days, and then surgery itself?

I have a couple update posts coming about the kids. I'm tired of talking about cancer. Next week I'll have a visit with my surgeon and oncologist, but until then, lets talk about the FAMILY, shall we???

Hello and GOOD NEWS!

Thank you so much everyone for your thoughts and prayers.

The first event on yesterday's agenda was the dye injection for the sentinel node biopsy, which was done at the breast center. This injection needs to be done in the nipple, putting radioactive dye into the breast that is later followed to the first few lymph nodes using a Geiger counter. I'm happy to report that although I had TONS of anxiety about this procedure, I didn't feel a single thing. Not even a tiny sting! The dye is infused with lidocaine so the entire procedure is not felt. It was a bit awkward that the radiologist doing the inject is Greek God hot. He also made a nice big black "X" over the lump for the surgeons reference later on.

Then I was brought over to the pre-op area at the hospital and Dean joined me there. I got all hooked up to the various things. My surgeon came in to talk to us, and I said, "Lets go! Get this thing out of me." He replied with, "We're gonna cut it out, chop it up, look at all the cells, and get you back to 100% in no time!"

I suggested they give me the happy drugs ASAP so I would just stop talking everyone's ears off about various dumb things. When the finally did I think I was in the middle of signing something. They next thing I know they were waking me up! LOL

Surgery did take a bit longer than the surgeon expected. As is common with this type of cancer it has a lot of little fingers and can be hard to get clear margins around the tumor. He told us there was a chance  I'd have to go back into surgery in a couple of weeks to get the rest of it.

After surgery he told Dean the first piece of good news! The preliminary pathology report done in surgery is that the lymph nodes are clear of cancer. YAY!!! Thank you God for this answer to prayer! This is a *very small* chance that cancer will be found when the full pathology report is done, but it doesn't happen very often.

Last night was pretty rough. I was taking percoset which doesn't agree with me very well. Lots of vomiting and that horrible feeling of just being out of it. I couldn't even sleep well because it makes me jittery. This morning I got up and helped Dean get the kids off to school, then Audrey and I hung out for the day. I only needed tylenol today. I'm a bit sore, mostly under my arm where they had to go through muscle to get the lymph nodes.

Then, just a few minutes ago, at 8:00 pm tonight, my surgeon called to tell us the margins are clear! That means I don't need another surgery!!! It also means as soon as I'm healed from this one - 4-6 weeks - I can start radiation. I will have this all behind me by my birthday the end of June!

Thank you all again for your tremendous amount of love, thoughts and prayers during this ordeal. Still a few weeks of trials ahead of us as we navigate fitting radiation and its side effects into our lives, but tonight I'm feeling SO much better about everything!

So many things!

There are so many things on my mind right now. This post will be all over the place, just like my thoughts are lately.

First, let me talk about stupid cancer. It is keeping me awake at night. My moods vacillate between angry, confused, sad, irritable, accepting…..and then there is nervous. I can't help but be nervous. In the scheme of things, a lumpectomy is nothing. I have had MUCH more invasive procedures done than this. But really, its the waiting for the lymph node biopsy that makes me nervous. If the cancer is in my nodes…….

Abel had an amazing day at school today. His best  yet. He had a really tough time while I was gone. Thankfully he has awesome staff at school who care about him, and understand how his previous environment caused so much damage that we all have to work so hard to fix. And that some of it may never be fixed. I pray the coming days continue to be good ones. I'm glad we've come up with a plan to keep his days as consistent as possible.

Angela and Axel have a teen dance coming up. Angela is SO very excited. Dances are her thing. Axel will like it too. He's not as excited as Angela because he doesn't get what I'm telling him yet. When we get there he'll be happy he's there.

Asher. The love. He's just a happy guy. He's vying for attention right now, soaking up all the extra he's getting as we make a point of letting him know his place in the family is so important. Now he's the big brother to a sister 6 weeks older than him. He is loving his role and very proud to show Audrey all the things big kids can do.

And Audrey. Oh this child! Every day she melts Dean and I into a puddle of mush as she bats her eye lashes and flashes her grin. She is pure light and joy. Our other kids are happy kids, but Audrey….she is different. I wish I could explain it to you. She twirls to music and showers us with hugs and kisses, or convinces us to sing "Head Shoulders Knees and Toes" for the 75,000th time and we do it because she's such a joy to watch when we do. She is understanding so many directions right now, and every day surprising us with something we didn't know she knew! We have found it works best for Angela to go to bed first so she can fall asleep before Audrey comes in. With that came the discovery that Audrey gets a second wind in the evening when its just her with her mama and Papa, and she is hilarious to watch.

I have found the last few days I've been a bit irritable, and as I stop myself from snapping at someone I wonder where this irritability is coming from. Then I go on the breast cancer forums to discover I'm not alone. It is just part of the emotional journey through breast cancer. I still can't believe I am typing those words. Breast cancer. Two little words which cause my stomach to twist into knots and bile rise in my throat. Words that cause a tear to roll down my cheek. Even as I refuse to claim parts of it, I know the story is already written. I want to turn to the last chapter to see the ending, but the pages have been torn out. I can only know the outcome as I experience each event.

Sentinel Node Biopsy

Next week when I have surgery I'll also be having a Sentinel Node Biopsy.

First I'll go to the breast center and will be injected with radioactive dye. Then they'll take me over to surgery to remove the tumor. They'll also use a geiger counter to follow the radio active dye to the first lymph node to biopsy it.

I came up with a brilliant question: "How do they inject the dye into the breast?"

I don't think I will be be asking anymore questions.

"The dye is injected through the nipple. You will be given a local anesthetic but there will be some discomfort."

What the…WHAT????

Through the nipple??? Ummm excuse me? That is a one-way orifice! Things don't go "in", they only come "out".  OUT PEOPLE!!!

Who came up with this idea? "Lets get a woman with breast cancer, and put a needle into her nipple, inject blue radioactive dye, then chase it around with a geiger counter. Yes. Yes lets do that!"

For your viewing pleasure, I present to you this one minute video titled, "Sentinel Node Biopsy"


I am not at all worried about surgery and being put to sleep. No. No instead I am worried about the DYE being injected before hand! I want a sedative. Now would be good.

Ok. I get it. Just like labor and delivery, thousands of women experience this every single day and they live through it, and in all likelihood I will too. Yes, I get that. I just don't really want to be one of those thousands who experience this biopsy. I don't want the "badge of honor", I won't want the battle scars. I just want it to go away.

Stupid cancer. 

Telling My Child I have Cancer

Of the five kids here, Angela is really the only one who has the language to understand about Cancer and what is ahead. Axel will understand that mom is "sick", as will Asher and Abel. Audrey is not even close to being able to comprehend at this point. I decided Axel will do best having things explained to him as they happen. But Angela…Angela knows something is up. The hushed whispers, the tears, the anxiety hanging in the air. I don't think its possible to hide cancer from my kids.

I didn't really know how to do this. I didn't plan a certain script. Angela is 17 but developmentally around 7-8 years old. Its hard to predict what she will understand about this so I figured simple facts and she'll ask questions as we go through this journey.

Today Angela and I went for a drive. A couple minutes down the road I turned down the radio.

"Hey!" she said, annoyed that I was messing with her tunes.

"Honey, I want to talk to you about something really important. Can you talk with me for a minute?"

Her eyes got big and wide. She folded her hands in her lap and turned to look at me. "Ok, lay it on me mom!" she said.

"Angela, do you know what Cancer is?"

"Huh?"

"Have you heard of the word Cancer before?"

"Yes."

"Do you know what Cancer means?"

"You die." she said, blinking big. Then, counting on her fingers, "Grandma Spring having cancer and she died. Rubee having cancer and she died. Shep having cancer and he died."

I took a deep breath, swallowing hard to control the tears that were already threatening. "You're right. Sometimes people and animals who have cancer die. There are lots of different kinds of cancer. Inside our bodies are tiny little pieces called cells. They're like puzzle pieces."

"I have Down syndrome. I have an extra puzzle piece."

"Yes, that's right. Cancer is a different kind of puzzle piece. Inside of us are our organs, like our heart and lungs…"

"and my esophagus."

"Yes, and your esophagus. All those parts are made of cells. But sometimes those cells don't grow right. They get all confused and they start to grow wrong. Cancer means having mixed up cells in your body. We found out that Mommy has cancer."

"You will die?" she asked me, her eyes like giant brown saucers.

Oh dear God….this is so hard.

"No honey. Grandma had a kind of cancer that the doctors didn't have medicine for so she died. But I have cancer in my breast. Next week I'm going to have surgery and the doctor will take the cancer out."

"You get an IV?!" she asked excitedly, because she loves all things related to the hospital.

"Yes, I'm going to have an IV. The doctor will take my cancer out, and then I will come home. When I'm all better from surgery I'm going to have special X-rays every day for a long time. Those X-rays will find any sneaky cancer cells that might be hiding in my body. The doctor says I'm going to be just fine."

"Ok. You not dying?" she asked?

"Nope. Not dying. Just surgery."

"Ok. Great Mom! Can you turn the radio back on?"

Nobody should need to have this talk with their kid.

Stupid cancer.

Meeting with the Surgeon

Monday afternoon

For Christmas Dean had given me a gift card for a local spa. Last week I scheduled myself for a one hour massage and foot scrub. That was before I knew I had cancer. Before I knew that later today I would be meeting with my surgeon and oncologist for the first time.

Today I laid on that massage table, crying silent tears while the massage therapist did her thing.

When my massage was done I didn't feel all tingly like I usually do. My tense muscles didn't feel any different than they did before. Stupid cancer.

I picked up Dean from work and we drove to the breast center in relative silence. I knew what was going through my mind, but what was going through his? Disbelief that he is living through this again? That lighting can, indeed, strike twice?

They called our name and brought us back to a small conference room. "We're going to leave Dean here while we do another ultrasound. The MRI showed another small area we need to take a closer look at."

For real?

Stupid cancer.

The radiologist dug around my breast with the ultrasound probe. Finally she found the spot they were looking for, buried deep in the breast tissue. She studied it carefully for several minutes. "It looks like an intra-mammary lymph node. They are usually nothing concerning, but when you have your surgery we'll probably look at it closer."

From there I was brought to an exam room and a few minutes later Dean was brought in too. Then my surgeon entered and introduced himself. He started with a breast exam. It suddenly occurred to me I will have more breast exams in the next few months than I've had my entire life. The words of my friend came back to me, "Say goodbye to your modesty."

Dr. S. sat down and tried to get to know us a little bit, then finally said he was trying to get an idea where our understanding of biology was. Dean laughed and assured him I probably know almost as much as he does. I laughed, feeling a bit embarrassed. Dr. S said he had gone over the MRI images with the radiologist, along with the new ultrasound of the intra-mammary lymph node, and invited us back to the conference room so we could discuss everything. We were introduced to one of the clinic nurses who would be taking notes during the meeting. Wow..a notetaker? I've been through many very intense meetings with medical specialists before, and never been provided a notetaker. Did I really need that? I almost said, "Thank you, but I don't think we'll need you to take notes." But a tiny voice in the back of my mind stopped me. "For once, let someone else do the work for you. This is your first lesson in accepting help."

I sat back and tried to concentrate on what the doctor was explaining. He stared at the moment of conception, explaining cell biology, mitosis, meiosis, and DNA replication. I wanted him to hurry up and get to the cancer part. Finally he got to epithelial cells, and what goes wrong in their duplication and how they become carcinomas.

I have two types of cancer:

Ductal Carcinoma In Situ, which means the cancer is still within the ducts, and Invasive Ductal Carcinoma, which means the cancer has broken through the lining of the duct and is spreading to other tissues. These invasive cells can travel to the lymph nodes, sending them to other parts of the body.

My cancer is 2 cm, which makes it a stage 1 cancer. However, if at the time of surgery it is found to have spread to my lymph nodes, this will change. 

My cancer is estrogen positive, which means it is estrogen fed. Removing estrogen from my system means cutting off the energy source for this type of cancer. I'll have to take medication for the next several years. The medication turns off the estrogen receptors. It will put me into menopause, or have my ovaries removed and take a different medication. (this is more probable because I have a significant family history of strokes) 

My cancer is HER2 negative. That means it is not producing a specific protein. HER2 positive cancers are much more aggressive than mine.

Twice during the meeting my phone rang. I had to keep it on because Noah was at our house getting the kids off buses. Twice there were calls because of issues at home. It gave the doctor a good sense of what our life is like, and how I'm always "on call". 

At some point the doctor asked me, "When you were told you had cancer, what was the first thought that came to mind?"

I started to cry. One of those cries I couldn't really control. Finally I said, "The first thing I thought was, "I don't have TIME for f-ing cancer." He looked me in the eye, "I'm glad to hear that. I'll tell you that over the years I have learned some things. Everyone has instinctual responses. I've learned that for people who's first thought is something related to death and dying, they have a much more difficult time with treatment, no matter what the treatment, than those who are a bit more stubborn about things. You'll need to learn to take care of yourself, but I think this will be just a speed bump in your life, and nothing more."

He continued to explain all the different surgical options that go along with various stages of breast cancer. Right now I will need only a lumpectomy followed by six weeks of radiation along with several years of medication to block the estrogen receptors. A few weeks of treatment, and then I'm done. With this protocol my cancer has a 5% chance of recurrence. 

And  here is where I get irritated with cancer again. I had already decided I would have a mastectomy in a few months, but the surgeon assured me this is not necessary with this type of cancer, that it doesn't change the outcome. So even though I have breast cancer, I don't get to buy the t-shirt that says, "Yes they're fake, the real ones tried to kill me." This should be a good thing, I know. But my mind is doing funny things right now. 

Nope, I don't even get a boob job out of the deal! The Dr. explained I may have some shrinkage on one side from the radiation, but that I don't really need a breast lift at this time because I have no sagging. Ok, normally I would have taken this as a compliment, but in this context I was a bit annoyed. "What? I don't even get a boob job out of the deal?"

And yes, I know more about boob jobs than most who haven't  had it done. I have done drains and a 27 inch incision from hip to hip. I know I'd rather have a mastectomy and reconstruction done preventatively than in a more urgent manner. 

Well, because I have breast cancer, I can talk to a plastics person anytime I want, and I could even get a boob job if I wanted. Its just part of breast cancer. But I think I'm pretty lucky I get to keep my natural boobs and will leave them alone. However, I reserve the right to change my mind.

When the meeting was done I was given a 3-ring binder full of information, including the contact information for everyone in the clinic and what their roll is. Its almost like they've done this before. I was also given the 4-5 pages of notes the nurse had taken for me. 

On Weds, April 2nd I'll be having a sentinel node biopsy followed by a lumpectomy. This is outpatient surgery and I'll only be at the hospital a few hours. I was told, "Because of the size of the lump and its location, the incision will be small and you'll be back in the trenches the next day without restrictions."

Really? With Dean sitting right there the dr. couldn't even give me two days of "stay off your feet and rest?" 

Stupid cancer.