Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, May 28, 2014

The last one is done!

I was going to post this a couple of days ago, but was afraid of jynxing myself.

A week ago I almost threw in the towel. I told myself "This is crazy. Why are you worrying about this while you're trying to go through chemo at the same time. LET IT GO Leah, just LET IT GO!"

And so I did.

And today, just one week later, I am declaring Audrey POTTY TRAINED!

Over the weekend Dean was outside with all the other kids. Audrey and I came in for a drinks. I checked my email and then I heard it…the music on her potty chair. It only works if the kid pees in it. I went into the bathroom and there she sat, in the dark, clapping for herself!!!

Oh Audrey! You are AMAZING!

She is taking herself, (she needs some help getting pants up/down) trotting herself into the bathroom several times a day. Waking up dry in the morning and going right to the potty, staying dry all day long.

This is it. Done. I have just potty trained my very last child.

Thursday, May 22, 2014

For this I am thankful

This is is not just a boring cancer post. I promise.

Things can go downhill so fast. Today was a good day! Pain level was very tolerable, I was awake all day. Audrey and I made a short trip to the grocery store, had lunch, then picked up the boys for therapy. I was fine, though starting to feel a bit tired by the time we headed home.

Sat in the sunshine to watch the kids play outside (you all know how I've been needing the sunshine this spring! Don't worry, I'm being careful with my sensitive skin in the sun right now.) and thought to my self, "Self…I think you have the chills." Took my temp and yes I am running another fever, 100.8 so I called my clinic.

As it turns out there was one blood test that was not back until today. Liver levels are elevated. Plus Dean says my port site looks worse tonight than it did this morning. The rest of my counts were right at normal yesterday, so my doctor said I could wait until morning to come in. Then I need some fluids for the weekend and IV antibiotics, plus re-check my counts, particularly my liver.

I felt pretty ok all day, and  yet there was something brewing. I ended up in the Emergency room at 1:00 a.m.

Still, God very clearly showed me something today.

I am thankful for Cancer.

Cancer is part of my life story. By walking through this journey I am living out the plan that was pre-ordained for me so that I might become the person God intended me to be. I need cancer for me to grow. Personally I would have chosen something different, like winning the lottery or something, but I know God's plan is way better than anything I could ever think up on my own.

I am thankful for chemotherapy.

Yesterday, as I sat in the chemo chair getting rehydrated, I looked around the room at all the other people. Those who have been doing some version of chemo for months, others who were arriving for their very first time. I visited with the man next to me. I tried to hold myself together as he humbly told me bits and pieces about himself, about how he never thought he would have kids, but his only son is now 6 years old. My new friend will not be here to see his son's 7th birthday.  All these people have a story. Some will not be here next year, or next month. Some will still be celebrating years from now. God wants me to meet them. He PUT me there to meet these people. Yes, I would rather meet them on a cruise or while sitting on the beach of some tropical island, but God's plan is way better than anything I could ever think up on my own.

I am thankful for bone pain.

I know, right?

It is about compassion.

I know I have not always been the most compassionate person in the world. Yes, I can do a lot of things, but compassion is an area where I struggle. "Deal with it". Know what I mean? But in the past week there has been more compassion poured upon our family, with every day something happening that astounds me. Still I have had conversations with people who say the compassionate words but their voice says differently. It is what I have always done. I have said the words without always feeling them. The bone pain I have had the last week has shown me what true pain and misery is. Never in my life have I felt such pain, even after major surgeries. And still, I know there is pain worse than what I have felt this week. At some time I am going to need to care for someone who is in a lot of pain, and I am going to need TRUE COMPASSION to understand that pain and care for them the way God says I should. When you are lacking in compassion, God will find a way to develop that in you. So thank you, God, for bone pain.  God's plan is way better than anything I could ever think up on my own.

Wednesday, May 21, 2014

Round1 Day7: Notes to self

These notes have taken me days to write. They're mostly for me to remember back, but for others too who will be behind me. If you're new here, I'm honest. I don't hide behind the positive because it isn't helpful to anyone. I can have a positive outlook while swimming through hell, I've discovered.

Day 1: Thursday, Chemo infusion.
Note to self: Taxotere goes straight to my GI system and I will not be able to drive myself home. IV steroids keep me "up". I get home, life is normal other than frequent trips to the bathroom. S. S. made dinner and watched Audrey. Thank you!

Day 2: Friday, Neulasta injection. This keeps my white counts up so I don't get sick. So far so good. Running to the bathroom within 10 - 15 minutes of eating or drinking anything. Doesn't matter what it is, but so far am staying hydrated. Taking all my anti nausea drugs plus decadron. L.G. made dinner. Thank you!

Day 3: Saturday. Taking my oral  anti nausea drugs faithfully, in addition to decadron. Drove Angela to a class and realized I probably should not be driving because I was way too sleepy. Got home and took a short nap while Dean and Tyler hooked up my sidecar. Will give the kids short rides after I run Tyler home. So I thought. Haven't eaten all day to stay out of the bathroom. Got home at 7:00 and went to bed. Slept until Sunday. Bone pain from Neulasta has started. Its tolerable. I can do this.

Day 4: Sunday. So *this* is "bone pain". I can do this. Slept 17 hours. When I was awake it was to make toilet runs.

Day 5: Monday. Ok, I get it  now. Bone pain. It comes in waves. When it is "low", I'm about a 4 on a pain scale. It is like having influenza, that same kind of ache, only you can't get rid of it. When a wave hits…I have nothing to compare it to. No frame of reference. It keeps me in tears. There is way to find a comfortable place to lay. Hot baths do help some. Texted Dean and asked him to please bring home destin diaper rash cream. I'm desperate. Pooping pure bile tears your skin apart. My friend Ann spent the entire day here, keeping Audrey occupied while I stayed on the couch. Praying today is the worst day. K.F. from the DSAM brought dinner, and her husband's amazing cookies! I was able to eat a couple, (out of desperation, I was forced to eat them. Really.) I wish they had stayed with me. We will need that recipe. Slept 10 hours during the day.

Day 6: Tuesday, There is a God! Today the bone pain is mostly gone. I can move around. Still no energy but I didn't sleep all day. Ann came again to hang out with Audrey. It's been 245 days since we hit 80* here. We sat outside in the fresh air while I took so pictures of Audrey and Alice. Thankfully pushing the shutter button doesn't take much energy. We need to teach Audrey to smile on command.
Got a little over heated in a few minutes. Plus the constant toilet trips. The boys' therapists made dinner. Thank you!

Day 7: Wednesday. What the hell????? Why is the bone pain back today? Why am I miserable? I'm back to Monday's level of pain. Scrounged up clothes for the boys, shorts and tshirts. Was surprised later to discover it was only 58* because I was sweating and hot. Hmm Must be hot flashes. Have a check up at the Onco clinic. Pretty sure I'm dehydrated. And there is a new rash covering my forehead.

Notes to self: When you are dressing the children in shorts when the rest of the world is wearing sweatshirts, it might be a good idea to take your temperature. Got to onco clinic to discover I'm running a fever. Nurse took my bloodwork and asked, "How are things going." which is when I started bawling. I hurt so bad. And was weak. And I don't even know why I was crying, but she put my head on her shoulder and patted my back, then pulled back to look at me and said, "Yep, no tears. IV fluids for you." Then she said, "I have something for you. We only have a few of them. Be right back." She came back with a 31 bag full of goodies for sitting in the chemo chair! How sweet she was. And I love the bag.

First I had to meet with the doctor. My counts are good. The neulasta is doing its job keeping my white counts up. Without it I'd be in the hospital at this point. Thanks to the Taxotere causing severe diarrhea I've lost seven pounds this week. Usually the Neulasta pain only lasts the first week then goes away, "however there are the few people who it hangs around the duration of therapy". Oh good Lord, I have drawn the lucky straw AGAIN! She asked me about the pain scale. At the moment I was at a 3-4, but told her about the waves of pain. She explained how that worked and why it happens the way it does. Because of my GI troubles I can't really take oral pain meds, so if I get to 10 I should go to the ER and get IV pain drugs. The weight loss is not acceptable so we need to get the GI troubles turned around. She cautioned me about colitis and my increased risk because of the current GI problems. Told me what to watch for. The forehead rash is from the Taxotere and normal. She suggested I keep "Day 6" on my schedule as a day to get IV fluids. Also, this Friday if I still have problems I should go back in for more fluids before the long holiday weekend.

Next I sat for a couple hours getting my long drink. I visited with a guy next to me and we watched as a nurse walked by with a bunch of cupcakes. Right past us to the other side of the room (out of our sight). "That is cruel!" I said to my neighbor. "But if they come back this way I'm getting one of those pink ones!" Sure enough, someone was having their last chemo and brought treats for everyone. That pink cupcake was so delicious. I hadn't eaten for a couple of days so I was hoping since I was rehydrating it would stay put in my belly. No such luck, but it tasted good anyway!

I had hoped getting rehydrated would end the bone pain, somehow. But I was wrong. At the moment I'm at a 3, but just finished a wave that had me doubled over, my knees not wanting to hold me up. I expect it will be back in a little bit. So, if I hit that 10, I can go to the ER for pain meds. But…where is "10"???? Is it when I almost can't walk, or when I can't walk?

There are times I remember I am not the only person going through this. There are lots of women going through chemotherapy to treat their breast cancer. But I have to tell you, when I am writhing in pain, when I cannot walk, when I am shitting acid every 40 minutes…in those very moments the others don't matter to me. I feel horrible for them, for us, I wonder how my friends who have entire lifetimes of this ahead of them…how do they DO this? I feel like a baby. Like a whiner, because I can't handle just this one session. But in those moments, all the others fall away because it is all I can do to get through the horrible moments.

But my doctor reassured me. This drug, Taxotere, is a hardcore chemo drug. That's why its only taken every 21 days, so your body has time to recover in between. Its why it is only given 4-8 times.  Its not a possibility for me to not take the Neulasta shot because its what is keeping me out of the hospital.

I'm lucky. Once again I drew the lucky straw and got the worst of the side effects that come with these drugs. One treatment down, three treatments and 61 days to go. I can do this. (and S. made dinner. Thank you! Need the recipe for those little muffin thingies!)

Friday, May 16, 2014

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! 

Thursday, May 15, 2014

Pretty things

Years ago, when Angela was 11 or so, she got her ears pierced. She had been asking about it for awhile but I had been hesitant because she has a lot of sensory issues and I thought they would bother her. Finally she convinced me and we did it on a whim one day while out with friends. She left them alone for the first 6 weeks but when it came time to change them the first time she wanted nothing to do with it. I think we managed to change them twice when I said enough of that! We let her ears close.

When Audrey came to us her ears were pierced. They had been done by her foster family and they are just adorable! She is very cooperative about letting me change them. Angela thought those little tiny earrings were kind of cute and mentioned she would like her ears pierced too. I reminded her we'd done this once before and the outcome wasn't so good.

Then I got to thinking a bit. I knew in a few weeks my hair would be gone and I was going to look very masculine. I had my ears pierced when I was 13 but at some point started reacting to the cheap metals used in cheap earrings. Since I only rarely wore them my ears eventually closed up. So, Angela and I decided to get our ears pierced together. We made a family event of it and had a good time.

So far Angela is liking her new earrings. 
She got stones from her birth month, which is June, which
triggered the daily "At my next birthday I want to…" conversation. 

Wednesday, May 14, 2014

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

Monday, May 12, 2014

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.) 


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.

Friday, May 09, 2014

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????

Thursday, May 08, 2014

If you would like to help

My good friend Linda Goddard asked me to post this to my blog. I feel a little odd about doing so, but if you have further questions you can contact Linda directly at lachergoddard at
Hello Friends and Supporters of Superwoman (aka Leah Spring),

As you all know our friend is about to embark on a journey to kick cancer’s butt.  If you are anything like me I’d like to help out this incredible and awesome family.  In good Minnesota form, one of the things I feel I can do to make Leah, Dean, and the kid’s journey a little smoother is to feed themJ  With Leah’s blessing, I’ve set up a schedule on and asked her to spread the word to her vast community of family and friends.  Take Them a Meal is a way to ensure that the whole family gets fed in an organized fashion.  If you are interested in helping out with a meal or multiple meals you can go to the website and find the schedule under Recipient Last Name – Spring and Password – (please email me for the password)  A schedule will come up and you can pick a date and enter what you’d like to bring the family for supper. 

Leah and Dean will have a cooler on their front steps and you can drop off their meal any time between 10:00 am and 6:00 pm for your assigned day.  The most important dates to fill are chemo days and the weeks following – May 15-20, June 5-10, June 26 and 27, and July 17-22.  It’s important to keep in mind that we are feeding quite the brood of growing kids.  Please be aware of what other meals are being dropped around the time you are interested in providing a meal.  Variety is the spice of life!  No fear for those who don’t cook and want to participate.  Ordering a pizza, Chinese take-out, or sandwiches are all still good options. 

Please let me know if you have any questions or have difficulty signing up (651-470-6501).

 Thanks much, Linda Goddard

Wednesday, May 07, 2014

Today he noticed his sister

If you've been reading here for awhile, you've read about Abel, and how he doesn't notice people. Its probably some of the strangest post institutional behavior I have seen. If a person (or animal) does not serve a purpose to him, he does not see them. He also cannot "see" outside of a certain distance away. His vision is fine, it is a psychological thing. I can show up at school and observe him in his activities, but he does not notice me until I get within his processing zone, which is about 15-20 feet. Anything outside of this area, he cannot process.

This morning Abel got up for the day, came to the kitchen and spontaneously gave Audrey a hug! Dean and I were both shocked. Audrey has not existed in his world because she serves him no purpose.  She has tried her best to get him to notice her, but he just walks away annoyed.

This morning Audrey was doing her morning stim dance. I thought maybe I could change it to a song so taught her the "Baby Bumble Bee" song. Abel loved it and joined right in, trying his best to say the words and making the "zzzzzz" sound at the end. Audrey loved it took, and soon the three little kids were all doing it together. So while I made the morning oatmeal we sang about 18 rounds of that.

Yesterday Audrey said "baby" for the first time. This is her first true word. This morning I asked her, "Where's the baby?" and she ran to get it, with Asher on her heels. We played with the baby a moment then I put it into Audrey's high chair then got a small dish and spoon, pretending to feed the baby. Audrey was NOT impressed this baby was in HER chair, but Abel? Oh he was all over this activity! He spent a good 10 minutes pretending to feed the baby, even using the edges of the spoon to clean the baby's face. He was so very gentle with the baby! Then he got a towel from the drawer and wiped the baby's face.

Then it was time to let Audrey sit in her chair for breakfast. Abel really wanted to feed her but he had his own breakfast to tend to. All the kids ate, Abel finishing first as usual. He waited patiently for Audrey to finish, then used the towel to gently wipe her face and wanted to lift her out of the high chair. (he needs to be a bit taller to do this.) When I handed him clothes for the day he pointed to Audrey and signed "get dressed", and looked at me expectantly, waiting for me to hand her clothes too.

This is such a major leap today for Abel. We so saw many attempts at speech, plus telling us things in sign that he had to come up with on his own without using wrote phases. Not to mention noticing he has a sister! That was the best part of all!!!

Today I take the three boys to the eye doctor. Audrey will be along for the ride so it should be fun keeping the four kids occupied in the tiny exam room for a coupe of hours, especially with their eyes dilated. Audrey's visit is not until later this month and Angela's in June.

Monday, May 05, 2014

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:
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"

Friday, May 02, 2014

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. 

Guess what!

Remember when I posted about having to sell my motorcycle? And I was really not very happy about it at all? Well, I received many inquiries about it, but in the end nobody actually showed up to look at it. This was such a long, cold, horrible winter. Whenever someone was going to come take a look it was a million degrees below zero, or there was a blizzard or some other weather related problem. It just never worked out. I had one guy from the sidecar community offer to pick it up, trailer it to his shop to fix the carb free of charge, then return it to me so I could sell it for a better price.

Eventually we completed the adoption and there was no longer a reason to sell my bike. Then I was diagnosed with cancer. I decided I would get it fixed and ride this summer. My bike was my sanity and I really felt like I would need that this summer, so a couple weeks ago we brought it to the shop, and now it's ready to ride! I'm hoping the weather this weekend isn't too horrible so I can get it home. The first big ride of the season is right around the corner, and I'm going to be on it!

Thursday, May 01, 2014

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.