Category Archives: Treatment Information

Breast Cancer and Vitamin D Levels

I’m going to get my vitamin D checked this week.  Now that I’m mostly finished with treatment I want to make sure my levels are good.  Here’s an article that talks about breast cancer and vitamin D levels.  That and I try to get outside for at least twenty minutes a day.  It’s a bit hard here in Michigan since most days are cloudy through the winter.  So my new doctor agreed to having that checked and my thyroid checked and wrote me a script.   Since my thyroid area was radiated I want to make sure it’s OK as well.

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I suppose one of these days I’ll mosey on back over to Ann Arbor to meet with my doc at University of Michigan.  She is an expert in the field of IBC so her opinions matter.  I don’t feel quite the urgency that I felt last winter, but I still feel like I should go.  I was just reading at IBC Watch (The link is to the left) and being reminded how great it was that I responded so well to chemo (no trace of cancer).  Women who are Her2 positive have much better success rates thanks to Herceptin now.  (If you have IBC and you respond to chemo and herceptin…..this is a very good thing.  So don’t let the information out there scare you…..lots of sites need updating!)

So I’ve never thrown a question out……but here goes….

If you have recently had IBC…..did you have chemo again after radiation?  My oncologist at U of M had mentioned doing this a few times, although these discussions happened before the path report that was totally clear after my mastectomies.  So I started with chemo (taxotere, carboplatin and herceptin) which got the cancer even in my lymph nodes, then I had the mastectomies, then six weeks of radiation. 

I certainly don’t want to lose my hair again but thought maybe someone might respond as to why I might consider chemo again….especially if you did it or knew someone who did.

Think Before You Pink

I’ve been quieter than usual.  I’m not sure why.  Radiation is going pretty well.  My skin is fairing well and I am past the half-way point.  I can now see pink outlines where the radiation covers and I feel sunburned.  I continue to lather on the aloe gel and lansinoh.  Yes….I am using something for breastfeeding moms but it works phenomenally well.  It is very greasy but I slather it all over me every couple of nights and I think it is saving my skin.  It is pure lanolin.  I also use vitamin E oil sometimes at night too. 

There are two issues keeping me from writing.  The first is fatigue.  Which I assume is from radiation.  So I have given in and decided sleeping during Elijah’s nap is quite alright for a few weeks here.  The second reason is my eyes.  I’m struggling still with dry eyes and I’m beginning to wonder if I need bifocals?  Hopefully they will heal in time once my cells recover from all that chemo I had.

On another note it’s Breast Cancer awareness month and another mother’s with cancer blogger posted this web site that I thought I would share called Think Before You Pink which challenges companies to accountability for pink ribbon practices.  There are a lot of pink ribbons out there so ask questions about what you’re buying and how the proceeds or products effect breast cancer. 

I also spotted this web site through Ford with some really cool apparel and gifts.  I thought they might make some fun Christmas gifts.  It’s at www.fordcares.com

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I Just Wanna Be OK

The only time I have ever cried during treatment was in the seconds before my mastectomies.  As they wheeled me into the operating room I shed a few last minute tears in fear and anticipation. 

Today was the second time.

I arrived at my radiation appointment at 2 pm today.  They had shown me where I needed to go and change and the waiting room where I wait.  When they showed me before, the room was empty.  This time it was full of women.  As I walked in you could hear the conversation pause.  All eyes were on the newbie.  And I was getting those sad looks as if to say….she is way to young for this.

Because I was the youthful one in the bunch and there were limited chairs I decided to sit on the floor.  One of the ladies was called in and came back quickly.  She was extremely happy because she only has three more treatments….which is great.  As the ladies peppered her with questions about her treatment she proceeded to show us the siren red rectangles on her chest from radiation.

I was horrified.  The newbie almost got up and walked out.  I had a few moments of “how can I sneak out of this room without detection” thoughts racing through my head.  Not only that but I would have two of those siren red rectangles on my chest.  I love to know what is ahead of me on this journey….but I don’t know why, but I wanted to cry right there on the spot.

When I got into the radiation room I had to lay on a hard board with my hands above my head for what seemed like forever while they took pictures to know exactly where they beams would hit.  Th painful problem was that I had my mastectomies only a month ago and my muscles do not stretch over my head that well.  Within minutes I had no blood circulation to my arms.  When I asked if I could take a break they told me they would have to start all over again.  After a while they did give me a break but as I started the next time it felt worse.  This time I could tell these extremely nice ladies were getting very frustrated with me.  They wanted to get this process over.  The computers had crashed in the cancer center earlier in the day and they were running behind. 

When they told me I had to hold that position and not move the flood burst.  I laid there with tears streaming down my face.  I could sense them hurrying around me but it still took forever.  AND they didn’t even finish.  I still have to go in tomorrow and finish the picture on the other side. 

As I drove home in tears I realized that the marks on my chest they drew on me come to the middle of my upper chest.  Which means the final shred of dignity is lost.  I was just warming up to my new figure and feeling OK with my new look and now I realize that any remotely v neck shirts will show my siren red sunburn.  Great.

So as I near my house this song comes on the radio.

http://su2c.standup2cancer.org/sutv/lift.php  (click on the picture of Ingred Michaelson)

And I am reminded that I made it through chemo.  I made it through the removal of both breast.  I made it through a cancer diagnosis.  I will always be broken.  But I am never alone.  I have a wonderful community of people around me.

Then I got home and I came in the door and three little munchkins yelled “mommy’s home” and raced to the door to greet me.

I just might go back to radiation tomorrow.

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Strong One

“But she said, “Don’t call me Naomi; call me Bitter. The Strong One has dealt me a bitter blow. I left here full of life, and God has brought me back with nothing but the clothes on my back. Why would you call me Naomi? God certainly doesn’t. The Strong One ruined me.”  (Ruth 1:20-21)

 

The five stages of grief are denial, anger, bargaining, depression and acceptance.  If you’ve been diagnosed with cancer, you are probably somewhere between denial and acceptance or you have past through this journey.  I went through them.  I’m still going through them.

 

Tomorrow I start radiation.  Six weeks, everyday.  I am left to wonder how I might fair through all of this.  I have heard that some people fair better than others.  The biggest complaints are a sunburn feeling, including some as bad as blisters and fatigue.  Considering that I am fair skinned and grew up having allergic reactions to the sun called a sun rash at the beginning of every summer….I am a little fearful.

 

I am also a little angry.  I am just healing from the mastectomies.  I have worked diligently over the past two weeks to stretch and massage my scar as much as possible in hopes that I might fair better through radiation, but I still wake up every morning tight and I have to stretch again.  Sometimes in the mornings I wonder if all my work to gain flexibility is in vain.  But the truth is that I feel better than I did a few weeks ago even if I am sore every morning.

 

Every step of this process has forced me through these stages.  Obviously the early days were worse than they are today as I start radiation, but I have gone through denial at each step.  Last week I emailed my oncologist just to double check that I REALLY needed to do radiation. 

 

So I can identify with Naomi here.  Maybe you can too.  Maybe you have breast cancer, or maybe you have lost someone you love or maybe you’re being forced to trek through new territories. 

 

I am tempted at times to think that the Strong One has dealt me a bitter blow, but the truth is…..I think he’s angry for me today too.  Let me explain….

 

I view God in so many different ways.  I love the way the Message Bible translates Naomi’s description of God here as “Strong One.”  Without a doubt I believe He was strong enough to take away my cancer.  But He was also strong enough to allow me to have it as well.  AND he is also my friend and I have a personal relationship with Him and I believe He mourns with me and is angry with me and rejoices with me just as my best friend would.

 

When I was in college ministries I had a student who was angry with God.  There was just a lot of junk in her life and it just wasn’t a good idea to defend God at that present moment.  I just reminded her that Jesus cried out on the cross “My God, my God, why have you forsaken me.”  I can’t know exactly what Jesus was thinking at that moment, but I think He felt forsaken and maybe even a bit angry hanging on that cross in humiliation and unimaginable agony.  He had a genuine relationship with the Father, He could be real.  You can be real with someone when you have built a relationship with them.

 

So be angry with God.  He is a big God.  I have shed a tear or two with Him over these past months and I probably will again tonight as I brave this unknown territory.  But He has been my rock so far.  He has gotten me through days I never thought would end.

 

He is the Strong One.  He is your Friend.

 

 

 

 

 

 

 

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My New Tattoo

Today I got my “Phoebe” tattoo.  For anyone who is 30 something you can appreciate the tatoo of the world I got at radiology today.  I actually have three of them.  You’d have to look closely, but believe me, they’re there….lol! 

If you weren’t a Friends watcher, you won’t get it. 

Seriously though…..I have three dot tattoo’s on my chest for radiation that starts on the 8th.  They do the tatoos to help line up where the beams of radiation will go.

Living

The kiddos have gone to bed,  The sun is setting and Jeremy is playing the guitar in the next room.  It is nice to enjoy the quietness.  We don’t get that much around here.

Today I went for my first physical therapy session at Bronson.  They mainly quized me on what hurt, how I felt, etc.  They measured how far I could lift my arms, movement, etc.  I am really glad therapy is happening.  I’m so determined that I want to get back to normal as soon as possible.  I’m not miserable, but I wake up every morning thinking about the fact that I have to go through another day feeling like this.  The physical therapist and I chatted as he was measuring and discovered I USED to do triathalons and he DOES them now (notice the difference…..lol).  I admitted that now more than ever (since cancer) I want to be more diligent about getting back into swimming and running (the biking not so much).  I’ve been eying the masters swim team in the YMCA brochure….he said not quite yet…..but soon.  I really got the feeling he was looking forward to working with me so I can get back to living how I want to live. 

All along this cancer journey I get the feeling people want me better.  I have yet to meet a person that just doesn’t seem to care.  So if you ever have to take this journey or are starting it and reading this…..there will be many along the way who will work with you, take care of you and want the best for you.

Drains Out

I went in today to have the drains taken out.  We forgot the sheet that keeps track of how much fluid was comng out.  We tried to get ahold of my MIL at home with the kids.  No one answered.  We tried the neighbor.  Shoot….all that work measuring bodily fluids for nothing.  Thankfully she trusts I am not oozing an obscene amount and takes them out.  She is not a “ta-da…here they are” doctor.  I have to remember she is not a psychiatrist but a surgeon.  I still want to chat about how it looks.  I want reassurance it looks ok.  I’m going to ask Jeremy.  I know what he’ll say….he always says I look great.  I tell her I look thinner without breasts.  She agrees.  We’re trying to find positives.  I say “I bet I weigh less now too.”  She laughs.

Once again she busily works on my dressing, pulling and proding.  I felt the drains coming out but it didn’t hurt.  Just felt weird.  As we leave I tell her she did a good job.  Like I’m rating her performance.  On a scale of 1 to 10, I give this mastectomy a 9.5.  Clean lines, pulled tight, flat as a board.  I feel silly after I say it.  She nods and smiles.  I have to say I’m going to miss Dr. Kalinowski when this is all over.  She is this beautiful red-head with all the tenacity to be a surgeon.  She was an operating room nurse and went back to med school to be a surgeon.  When I meet with her I want to be strong because I think about how strong she has to be to do what she does.  I want to hang out with her.  I want to get to know her on a personal level.  I wish we were friends and had met on different terms.  I wish my daughters knew her.  A nurse over at the cancer center just raves about Dr. K.  She used to work for her.  So I’m thinking she is quite a mentor to other young women.  Pretty cool.  But she is the doctor, and I am the patient, and truthfully I hope if we do run into each other after this is all over it is on totally different terms.  I hope.

Doing Well

I’m going to heed Pam’s advice and not write too much….but I wanted to thank everyone for praying.  Everything went really well.  I am not in too much pain but I keep up on the pain meds.  I did have a little allergic reaction last night and was itchy all over so we had to switch meds but am doing fine now.  It wasn’t very fun to be itchy when your arms hurt! 

I felt a huge amount of relief and peace when I woke up after surgery.  I know I made the right decision….it’s the anticipation that can really be difficult. 

Here’s another nice thing….I knew my anesthesiologist!  We were in youth group together in high school!  I had no idea he was a doctor.  The first thing I thought was….crud…he’s going to see my breasts!  Then I thought….oh well….I’m not keeping them so it doesn’t matter….lol!  I found it very comforting to know the person that would hold my life on the line and wake me up when it was all over.  I think a few of you know Dr. Zack Kirwin.  There are several nurses here from my church as well so it’s been nice to have familiar faces around.

I’ll be good and not write too much.  Thanks for your words of encouragement and your prayers and good thoughts.

Love you all!

Double

Thanks to everyone who came out for my bye-bye boob party. I had a great time. It was a beautiful evening and a perfect night for a ladies night out. We ate boob shaped truffles (thanks Christa!) and a lovely boob cake (thanks Katie!). There was a lot of laughter and chatting which is exactly what I wanted. Thanks for keeping me upbeat. I’ll post pics when I get them (thanks Christina!).
On another note my trip to Ann Arbor was today. After meeting with Dr. Merajver I have decided it would be best for me to have a double mastectomy. We discussed the high rate of reoccurrence in Inflammatory Breast Cancer and that we wouldn’t want to regret not doing everything we can to keep it from coming back. And if it does reoccur she said it likes to make itself at home and is harder to get rid of. And since it looks good so far I’m in agreement with her. She also wants me to consider more chemo after radiation. I’ll take one day at a time, but if that’s what I need to do to make sure it doesn’t come back I’ll do it.
I called Jeremy right away and he agreed he would feel better if we said goodbye to both. I told Dr. Merajver that my MIL and my mom and dad would be relieved too. They didn’t say a lot but I knew they weren’t fond of my decision to keep one.
Thankfully Dr. Kalinowski had planned an extra hour and a half for my surgery so they were able to make the change. I wonder if they deal with women like me often….as we freak about the whole situation. I wonder if women call and cancel at the last minute often?
So I’m scared, but I feel a great amount of peace. I figured there were three scenarios when I went over. The first being a mastectomy and a lumpectomy as planned, a double mastectomy or she would say great….no surgery….it looks like its gone! I desperately wanted the later but I had a feeling it would be the first. And I needed someone to be brutally honest with me. And maybe I really wanted her to tell me to get rid of them because I wasn’t strong enough to do it on my own.
I hear it’s not as bad as what you think it’s going to be so I pray that’s the truth. I’m going to keep busy tomorrow so as not to dwell on it too much.
My surgery starts at 7:30 am on the 30th and will last till noon or so. So if you think about it say a quick prayer for me, for Dr. Kalinowski and for Jeremy and my parents as they wait.

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