Six months post surgery

Recently I passed my sixth month post surgery date from my double mastectomy and a couple of friends have asked for an update on my recovery, so here it is.   The short answer is – I am doing great!  Honestly, recovery has gone so well that at this point, days can go by where I don’t even think about the cancer diagnosis or the surgery – and that’s saying a lot considering the fact that I have this very visable reminder when I look at my flat chest in the mirror.  I don’t usually give much thought to my appearance except when I am doing public speaking or training with groups that don’t know me well.  I was very open about my surgery with all of my friends and coworkers, so it’s no secret that I had a double mastectomy with no reconstruction.  But sometimes when I stand up in front of audiences that don’t know my history, I wonder if they can tell.  I wonder if they notice my flat chest, and if they do, do they just think I am flat chested, or do they wonder if I had surgery?  I’ve heard others in my situation tell stories of being mistaken for someone who is transitioning their gender, so sometimes I wonder if people look at me and wonder if I am a male who is transitioning to female and hasn’t grown any breasts yet.  When I go to the YMCA, I often wear this pink breast cancer survivor tshirt that I got at goodwill, just so if people notice my flat chest, they will quickly connect the dots to the cancer.

My incisions from the surgery are healing beautifully, and I am forever grateful for the amazing surgeon who took such good care of my body to give me such a good outcome.  I am a member of a facebook group for cancer survivors who had mastectomies without reconstruction, and many times women will post photos after the surgery and vent their frustrations after surgeon leave extra skin, just in case they change their mind and want reconstruction later, even though the women were admandant that they didn’t want that done.  I’m so thankful my surgeon listened and heard me, and honored my wishes.  I’m kind of proud of my scar, because it makes me feel like a bit of badass for surviving this major surgery.   For me, it has been an empowering experience, knowing that I could make this decision for surgery and come out on the other side just fine.  I occasionally offer to show my scars to friends, because I am so proud of them, but most of the time my friends decline my offer, which is fine.  I briefly considered posting a photo here, but didn’t want to make others uncomfortable, as I’m sure there are some people who might be okay reading about the update, but don’t necessarily want to see a photo.

I’m also so grateful that I did not need to have any chemo or radiation treatment, and I am well aware that I escaped some of the worst parts of cancer treatment.  This month, October, is breast cancer awareness month so there are lots of reminders every where I go.  But I find that I don’t really embrace the survivor title, because my cancer was found so early, and survival rates at that point are 100%.  So there was never any fear that I could die, at least not right now.  Mostly I just feel grateful that I was able to prevent the cancer from fully developing into what it had the potential to be.

But in the midst of all of the reassurances that I did the right thing and lowered my risk and all of that, my fear of cancer has definitely grown.  Even though my doctor told me that I am not at increased risk for developing another cancer, I don’t believe her.  I fear that it could come back in my chest wall, or some other part of my body completely.  I’ve seen pictures that other women have posted when breast cancer came back even after they had surgery and had no breasts.  And I know that the cancer that they did find was grade 3, the most aggressive, and that it was actually two separate kinds of cancer in two different spots, growing at the same time.  I try not to worry about it too much, but think of it more as just having developed a healthy fear of cancer, if there is such a thing.

I completed my initial program at the YMCA (Livestrong at the Y), and at our graduation, my instructor described me as a secret ninja, which made me smile.  She convinced me to sign up for her alumni group, which I did.  Although I must confess that I have missed all but one session so far because we had a big project come up at work that has consumed many of my evenings.  I’ve had lectures from friends and coworkers about taking care of myself and prioritizing my health over work.  And I get all that.  I just happen to really like to work, so choosing work over working out is a no brainer for me.  I know I need to change that.

I’ve only had one negative experience as a result of the surgery.  Not too long ago I was visiting with an acquaintance, a friend of one my nieces, as we were standing outside of a Quick Trip.  He’s an older man and usually smells of alcohol.  As we were saying goodbye, he put his hand on my shoulder and then quickly commented that I wasn’t wearing a bra.  I explained to him that I had had cancer and had surgery and no longer had a reason to wear a bra.  He then tried to reach out and touch my chest and asked me a very inappropriate question about the feeling in my chest.  I pushed his hand away before he could touch me, but the whole experience really creeped me out and I’m hoping to never run into him again.

But overall, things are good.  I’m still figuring out the best wardrobe choices for my new figure, still need to work out more, eat healthier, and take better care of myself.  And I’m still grateful for so much, for all the friends who encouraged me and prayed for me when I was so scared before surgery and through my recovery.  And for God, who hears my prayers and blesses my life in so many ways.

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Ryan

I went to a beautiful funeral today.  A bittersweet good bye for a beautiful soul.  My eyes well up with tears everytime I think about it.  It was a sad day, as funerals usually are.  Of course there was a lot to celebrate, as Ryan lived a short, but purposeful life full of love.  But the church was still full of sadness because all of us who knew Ryan are profoundly sad not to have him in our lives anymore, and our hearts break for his small children who have to lose their daddy.

Ryan’s life was inspiring and I don’t feel like I can let this opportunity go by without writing about how he touched me (and so many others).  I didn’t know Ryan really well, other than the fact that I have gone to church with him and his sweet family for the past 8 years or so.  When I first met Ryan he was newly married to Kami and we welcomed them into our little church family where they quickly became a part of a cherished  group of people who struggle through life together, loving God, coming together weekly to worship Him through all the trials and celebrations.  And Ryan and his family have certainly had more than their share of trials, dealing with his terminal illness every day.  We all knew from the start that Ryan was not expected to live a long life, in fact, I think he outlived most predictions.  And I think I can safely speak for everyone that knew him when I say that we are grateful for all those extra years he squeezed out of life, even though it meant carrying oxygen with him everywhere and making so many trips in and out of hospitals for treatments.  It wasn’t an easy life, but Ryan wasn’t one to dwell on the difficulties.  He lived each day with the full knowledge that his life was short and he strived to make the most of his time.  Even when things were really hard, which they often were, he kept going, singing his songs and loving his family and friends.  What a gift his life was!  His funeral was the only one I’ve ever attended where I was given a parting gift of a CD with his music, and his songs truly are a gift.  He was a talented musician who wrote many beautiful songs and we were often blessed with his gifts as he led worship at church so many times over the years.

Thank you for sharing your life with us, Ryan.  Thank you for inspiring us to love God and live life with a grateful heart.  May Jesus be near.

 

No more surgical drain tubes!

Today I got the two surgical drains removed.  I had them in just under 2 weeks.  In preparation I took 3 advil and 2 percocets (and had a friend drive me) just to make sure I could survive what was sure to be an excrutiatingly painful experience.  I went, the nurse took off the bandages and told me to breath in deeply, and then exhale slowly.  “Okay the left one’s done, now let’s repeat that and get the right one out.”  I didn’t feel a thing, and I don’t think it had anything to do with all the drugs.  It ended up being a quick and painless procedure.  But it took me all day to recover from the drugs I had taken.  But what a relief!  I am sooo glad to have them out!!!

I’m still wearing a big ace bandage wrapped around my chest everyday.  It’s starting to itch as I’m getting feeling back, and still feels tingly a lot of the time.  Pain medicine doesn’t seem to help that at all, but it’s okay because it’s more uncomfortable than it is painful.  I usually wake up a little stiff, but as the day goes on I feel better.  The lymph node in my right arm is still swollen, so now that the tubes are out, I will work on some things to get that swelling down.  It often makes my whole right arm hurt a little bit, but I’m hoping some stretches will help.  And I’m still trying to set up a lymphatic massage, if I can ever get someone to call me back.

Tomorrow is Braxton’s 4th birthday and I’m so pleased that I am feeling well enough to celebrate with him!

36 more hours of drainage tubes…

Last night I started watching youtube videos of people getting their drainage tubes removed.  That was a really bad idea.  Really. bad. idea.  I went in on Monday (yesterday) because one of the tubes had part of the inside come lose, but the nurse decided to leave it alone since it was still working and should be removed soon.  I was hoping she would just remove them that day, but she said I needed to have 2 days in a row under 30 ccs and I had only had one.  So today (Tuesday), I had one drain ready to be removed because it had been under the limit for 2 days, but the other drain was a day behind and had only been under 30 ccs for one day.  The nurse said I could come in and have them removed at different times, but since it was so close, I decided I would wait and have them both removed tomorrow.  I was afraid that if I went in and had one tube removed today, and it hurt, then I would spend all day worrying and dreading going back in to have the other removed.  So it was better to do them both at the same time.  The nurse assured me that it doesn’t hurt, even said she had four of them removed from her own body before.  But sometimes nurses lie about stuff like that so you don’t worry, so I didn’t feel that I could trust her.  So I turned to the internet instead, which is always a bad idea.  While most sources indicate it is no big deal, I did find a few stories about how the pain was so bad they almost passed out.  And then the videos….oh my goodness.  The videos were made by people to show that it is no big deal to get the drainage tubes removed, but when I watched the first video, I wanted to pass out from the creepies.  I hate the idea of things in my body and watching them pull all this tubing out of someone’s body was just too much.  Yuck.

I called today to schedule a time to go in tomorrow and get the drains removed, but then was told that no one would be available to do it tomorrow and I would have to wait until Thursday.  What’s one more day, right?  So Thursday at 10:00 it is.  One of my friends is coming to drive me so I can take 2 percocets, just in case it does end up hurting.  The percocets have not ended up doing much for me.  They don’t seem to take away the pain or make me as tired I remembered from taking them a few years ago.  But I haven’t taken two at once yet, so maybe that will work.

Today I left the house to get a haircut.  Mostly, I wanted my hair washed really good since I’m not showering regularly right now, but decided I might as well get a trim while I was there.  It was enough to make me tired and want to lay down when I got home.  Any activity that gets my blood flowing, such as walking, tends to bring on a little bit of pain.  Only the pain is not as much an ouch kind of pain as it is just tingly uncomfortable pain.  And it’s starting to get itchy, especially near where the tubes are inserted.  I’ve been taking an allergy pill each evening (which helps me sleep more than the percocet does), but it doesn’t seem to help the itching.  When the tubes are out I should feel more comfortable using lotions and things, so maybe that will help.

Today I also signed up for a program at the YMCA called Livestrong at the YMCA.  It’s a 12 week program for cancer survivors.  You don’t even have to be a member.  It will start on May 3rd and I’m pretty excited about it.  It sounds like it will be a small group of people working with a trainer who has specialized training in working with cancer survivors around physical fitness.  I think it will help make sure I do the right excersises to build up arm strength and overall better fitness.  Sort of like a support group, but the goal will be physical fitness.

And today I left a message with someone about setting up a time to do a lymphatic drainage massage.  I have some swelling in my lymph node that was biopsied, so I thought that might help.  I’m hoping to be able to get that set up soon.

More ouch.

I think this was Easter weekend, but I can’t be sure since I spent the entire weekend in bed with lots of drugs in my system.  The tingly pain is a little better tonight than it was a few nights ago, so I hope this week will be easier.  With each day I am more aware of the drainage tubes and my hatred for them.  I took my second shower tonight and decided it will be my last shower until I get those stupid tubes out, which I hope to be in the next few days.  I can barely stand having to look at the tubes coming out of my skin, and when I shower I have to take all the gauze off and reveal all the stuff I’d rather keep hidden.  Everytime I see the area where they come out of my skin, I feel weak and dizzy like I want to pass out.  When the bandage is over them, I am fine with doing the draining and measuring and all that.  So I’m just going to keep the bandage on them until they come out.  I read somewhere that it is painful to get them removed, a quick, sharp pain is how most people describe it.  So I’ve been planning my drug routine to see how many painkillers I can get in my system about an hour before I go in to get them removed.  Because i don’t want to feel anything.  In fact, I’d prefer if someone could put me back under general anesthesia for a few more weeks and wake me when I’m further along the recovery path.  Or maybe one of those medically induced comas?  I just don’t want to feel anything, anymore.  And I want these *%&(#*(@)#$* drainage tubes out of me now.

Ouch.

Today I have been having more feeling in my chest.  It’s not really all that painful, just a lot of uncomfortable tingling.  I was texting some friends this evening and after I threatened to punch them in the face over something stupid, one of them asked if maybe I should take some of the medicine that has been prescribed to me.  After a couple more threatening texts (from me), I decided to give in and take some advil.  And to stop texting for the evening.  No sense in losing friends over pain induced texts, right?

One week ago today I had surgery.  I’m ready to be all better now.  I’m tired of laying around, resting, draining tubes, looking at incisions, and googling medical crap.  And I’m tired of sleeping on my back to make sure i don’t mess up the drainage tubes or the incision.

 

 

Work. Not ready.

I woke up feeling good today, so I decided to make a quick trip to the office to say hello to everyone.  It was nice to see people, but I was ready to leave shortly after I arrived.  I didn’t want to hear about work (despite my earlier attempts to hack into my email) and I could feel my chest starting to hurt as I walked around the office.  It seems that anything that gets my blood flowing ends up causing a little bit a pain.  Not severe pain, just slight enough that it makes me want to lay down and rest.

But there was also this hesitation that I felt about going back to the way things were before.  Even though my cancer diagnosis moved so quickly from diagnosis to treatment, and had such a positive outcome, it was still significant enough that I want it to change something in my life.  I want things to be different after cancer.   But I don’t know what that looks like yet.  This week has been so chaotic between surgery recovery and the rest of life that I haven’t had time to think about life after recovery.  And I don’t want to go back to work until I do.  I’m looking forward to next week when hopefully I will get the drainage tubes removed and will be feeling better so I can have some space to think and pray and be still.

The kids are going to their grandparents again this weekend.  It’s kind of boring around here without them, but I think it will be good.  I should probably be resting more than I have been and I’m looking forward to a couple of days of quiet.