Shopping with Mom

Ten days ago my dad had emergency open heart surgery. He’s in the rehab hospital now and doing well, but mom has been home alone for almost two weeks and it’s been a long two weeks. Her dementia keeps worsening, and it’s difficult for her to be alone. I check in on her every chance I get. I call multiple times a day and try to stop by at least every other day, if not daily.

Today I took off work early so mom and I could go to Horton’s furniture store and look at recliners with a lift chair function. I thought this might be helpful for dad once he gets home from the hospital. He’s not supposed to put a lot of pressure on his arms and chest, so this will make it easier for him to get up from the chair. And if the stairs are too much, he could sleep in a recliner, instead of trying to make it upstairs to his bed.

The plan was for me to pick up mom around 4:00 and we would drive to Horton’s. While it’s not far from her house, it is on the other side of the highway and she hates getting near the highway because of the traffic. I got held up at work and was about five minutes late. No one answered when I knocked on her door, and when I tried to open it, it was locked.   Fortunately, I have my own key to their home, so I was able to let myself in. Once inside, I called out and there was no answer.  I walked around to see if she might be asleep somewhere, but the house appeared empty.  I finally decided to look in the garage, and sure enough, the car was gone. Mom had taken the care and gone somewhere. I keep trying to keep her from driving, but she is quite stubborn and insists that she can still drive. She is denial about the dementia. She says all old people forget things. I keep trying to tell her that it’s different with her, more than just old age forgetfulness, but she won’t hear it. She refuses to discuss it with her doctor. And she refuses to give up driving.

I waited a few minutes to see if she might come home, and when she still wasn’t there after ten minutes, I called the hospital to see if maybe she got confused and thought we were going to meet there so we could visit dad. The nurse went and looked in dad’s room and up and down the hallway and said she didn’t see mom anywhere. Next I decided to call the furniture store, thinking maybe she got confused and thought we were supposed to meet there.

“Hi, I have a funny question for you. I’m supposed to meet my mother to take her to your store, but she isn’t at her house. I’m wondering if she might have gone to the store without me. Is there by chance an 80 year old woman looking confused in your store?”

“Are you Kelly?”

“Yes! So she’s there! Tell her I am at her house and I will be there in 10 minutes. Don’t let her leave.”

“No problem, she is fine. She is walking around asking everyone if they have seen her daughter Kelly. We thought you were in the store somewhere.”

A quick drive to the furniture store and I find my mom looking out the window, waiting for me. She waves to me as I pull into the nearest parking spot.

“Hi Kel! Where have you been? I’ve been waiting forever.”

“The plan was to meet at your house, mom.”

“No one told me that. I got lost trying to figure out how to get in here now that the highway blocks the entrance. I had to drive through all those houses and I finally found my way.”

“Mom. That’s why I don’t want you driving. That’s why I was going to pick you up and bring you, so you didn’t have to drive and get lost

“I can drive myself. I’ve been here forever! I’ve been here since 5:00!”

“Mom. It’s only 4:30”

“Huh? Why are we here? Are we buying new furniture?”

“We’re looking at chairs for dad, remember? I want a recliner with a lift seat to make it easier for him when he gets home.”

“What’s wrong with the chair he has?”

“It’s not a recliner and the springs are broken in the seat, so it sinks down lower than it supposed to.”

“I didn’t know that”

“Yes. You did. We’ve talked about this many times”

“I’ve never heard that before.”

“Yes you have.”

“No, I haven’t”

We find a salesman who walks us back to the lift chairs and shows us some of the options.

“Get in mom, let me show how this works. I think it will be really helpful because it’s all remote controlled, so you don’t have to lean over and use one of those bars on the side”

“Okay mom, I’m going to lean it back. See how nice that is? It goes all the way back so you could sleep in it.”

“Stop! This is too far back! This is scaring me!”

I push it back a little farther.

“STOP!”

I laugh and look at the salesman. “It doesn’t matter how old you get. It’s still fun to mess with your mom.”

My grins and shakes her finger at me.  I use the remote to lower the chair back to its original position and let mom climb out.

“You’ll just have to be sure not to confuse the chair remote with the TV remote or the cell phone.”

The salesman laughs, thinking I’ve made a joke. But this stuff happens all the time now. Last week I caught mom trying to close the garage door with the car key remote on her keychain, instead of the garage door remote. She kept telling me the garage remote was broke, so I gently explained to her that she was holding the car keys and not the garage remote. She looked at me like I had no idea what I was talking about it, so I just closed the garage for her and decided not to argue about it.

We looked around and found a chair we liked. I told mom I was going to run out to my car and get the couch pillow I had brought, so we could make sure the chair was going to match the couch. The salesmen left to check on delivery options for us. When I came in mom had wandered off and found some rockers that she was testing out.

“Come try these, Kelly. They are so comfortable”

I sit in one of the rockers.  “You’re right mom, these are comfortable. But they aren’t recliners and we wanted dad to get a recliner.”

“A recliner?”

“Yes. With a lift seat, remember?”

“A lift seat? What’s that? Do they have those here?”

“Yep. Remember, we just looked at some. Come here, I’ll show you.”

“Oh these are nice. He wants one of these?”

“Yes mom. Remember, we just looked at this one and decided it would be the best pick”

“Ohhhh, I remember. Yes, this is a nice chair. It’s leather!”

“Well, it’s faux leather, but it’s all the same”

“What?”

“Nevermind.”

“Is it time to pay this man? I went to the bank and I have my checkbook.”

“Let’s just put it on your credit card. That might be easier.”

“No. I hate credit cards.”

“Okay. Do you have enough in your checking account to cover this? I think you do, I think dad said you should have plenty.”

“I have enough money to buy five of these.”

“okay, then. But let’s just buy one today.”

“I went to the grocery store and I wrote them a check and they tried to give me back coins. I told them I did not want coins, I wanted dollar bills. They kept trying to give me coins, but I just wanted bills.”

“Mom, why would you be getting change when you wrote a check?”

“What do you mean? I paid for my groceries and they insisted on giving me coins instead of dollars. I don’t like coins.”

I tried to imagine the scenario that caused this scene, and assume mom wrote the check for too much money. I feel bad for the people at the store who had to try to explain this to her. I‘ve offered to take her to the grocery store almost every day, but she insists on driving herself.

“Why did you go to the bank today, mom?”

“I needed to know how much was in my account.”

“I can help you look that up on the computer.”

“Well, the computer is broken again. I didn’t want to bother you with it.”

“It’s okay mom, I will look at it when we get back to your house.”

The last time the computer was broken, it was just that she had closed her internet browser and couldn’t remember what to click on to open it back up.

She is changing so fast, and it makes me so sad. I’m thinking about posting this story on my blog. I’m writing because I want to remember what this period of time is like. It’s both amusing and extremely painful. A couple of years ago I would never post something like this on my blog because I would know she would read it and I would be in all kinds of trouble. But now she would never find my blog, or even understand what it is. I remember acomment she made on one of my early posts many years ago, a short comment about what a good writer I was and how she was proud of me.   I miss her. I miss who my mom used to be.

 

May the Birthday Month (and the story about the first case of AIDS 50 years ago)

I am not usually one to make a big deal about my birthday, but this year I am turning 50 and I’m actually kind of excited about it.  Which is a little weird considering how I handled my 40th Birthday.  I was angry about turning 40.  For at least four years.  I started getting mad when I was around 38 years old, angry that I would be turning 40 soon and wishing there was something I could do to stop it.  I didn’t get it over until I was at least 42.  Maybe closer to 45.  I know, it’s silly and childish to be angry over something so out of our control as getting older, but what can I say?  I was not happy about it.

But now 50 is coming up in a few weeks, and to be honest, I’m ready to be done with my 40s.  It has not been my best decade.  Most people think I feel this way because of having been diagnosed with cancer two years ago, that having cancer makes one appreciate their life more, be thankful to still be alive, all of that.  But honestly, cancer was just a small blimp in my 40s.  It was scary for about 3 months, but then it was easy to move on.  I haven’t claimed the “cancer survivor” status because it doesn’t feel like it fits.  It’s not mine to claim.  My diagnosis was so early and survival rates at that point are pretty much 100%, so I don’t think I actually survived anything.  I just had these little bitty precancerous cells and I choose to go all radical and get a big surgery and now everything is fine.  Well, mostly.  I did have to get a small chunk of flesh taken off my arm a few weeks ago by my dermatologist to make sure I didn’t have skin cancer.  Which I don’t have.  I guess once you have one kind of cancer, all your doctors worry more about other kinds of cancer.  So now I have to go see the dermatologist at least twice a year for screenings.  Yay.  But enough about cancer.

Today is May 1st.  The beginning of my birthday month and I’m in the mood to write.  I was born in 1969 and I’ve been reading a little recently about historical events that happened that year.  Apparently, I was not born during a boring time in history!  There was a lot happening in 1969 – Nixon, the Vietnam War, The Beatles, Woodstock, not to mention the space race was in high gear as the first man walked on the moon a few months after I was born. But the event I want to write about tonight happened on May 15, 1969.  An american teenager named Robert died in St. Louis Missouri of a baffling medical condition.  15 years later, in 1984, it will be identified as the earliest known case of HIV/AIDS in north america.  This fact stuck out to me as I was reading about 1969 because I just yesterday finished a book, The Great Believers by Rebecca Makkai, that told the story of young gay men living in Chicago during the mid 1980s, as AIDS was spreading in the community, taking the lives of their friends and eventually, themselves.  I loved this book so much and now I want to read all I can to learn more about the AIDS epidemic during the 80s.

I was a teenager during that time, graduating high school in 1987.  I remember learning about HIV and AIDS in health classes each year and how the infomation was changing so rapidly as more research was done and a broader understanding was gained.  It was a scary time, as AIDS deaths were increasing at an alarming rate, but it seemed like a far away problem, not something that was going to make it’s way to small town Kansas where I was growing up.  Some of the people around me believed it was God’s punishment for homosexuals, but I didn’t really give it a lot of thought since I didn’t even know anyone who was gay.  Or at least I wasn’t aware that I knew anyone who was gay.  But fast forward several years to college.  I was in Manhattan, sitting in a human ecology class at K-State and we had a special speaker come in to talk to us about AIDS.  The speaker shared with us several stories of individuals she knew personally who had died of AIDS, including one story about a young man named Brian who was from Wichita.  (I’m from Wichita – crazy!  I didn’t know anyone in Wichita had AIDS!).  As she shared this story, I slowly realized that I knew this Brian that she was talking about it.  He had been my youth pastor during 7th and 8th grades.  He was the one who kept encouraging me until I finally agreed to go to camp with the rest of the youth, he got me involved in youth group, and he was key person in building my faith.  He left our church for another job after my 8th grade year and I didn’t keep in touch with him.  I remembered that he had been engaged, but I heard later that they broke the engagement off.  We all thought Brian had this incredible amount of self control because he and his fiance (I think her name was Gwen) had agreed that they would not have their first kiss until their wedding day.  This started to make more sense now.  I had heard through the grapevine that Brian had died within the last couple of years of some kind of lung disease but no one knew the details.  I was sad because he had been an important part of my junior high years.  Now I was realizing that Brian died of AIDS.  Brian was gay.  And we never knew.

Reading this book brought all of these memories back, made me think about Brian, about how I felt learning about AIDS in junior high and high school when it was this huge thing happening in our world.  How incredible scary it must have been for those young men (and women, and children) who contracted the virus and knew they were going to die because there was no cure, no treatment at that time.  It’s so different today.  AIDS is no longer a death sentance and most people who contract the virus are able to receive treatment and live a long life.

I remember a couple of years ago when I started rewatching the television series ER over again from the beginning.  It premiered in 1994 and ran for 15 seasons.  I watched it when it first came on, but rewatching it now, I was really struck by how often the storylines revolved around HIV and AIDS.  One of the main characters contracted the virus and it was a major story line through several seasons.  The disease had only been around for about a decade when the show premiered.  It was big news and it was everywhere.  But now I’m almost 50.  Brian died 30 years ago.  So much has changed.

 

The marginalized

I attended a workshop this week that addressed the idea of Christians needing to have solidarity with the marginalized, and how that played a role in our spiritual formation.  During the session, someone asked a question about what a Christian should do when their efforts to help the marginalized are rejected.  A million thoughts flooded my brain.  I wanted to laugh at that question, while at the same time, my eyes began to fill with tears.  A million thoughts.  A million raw, angry, hurt, broken-hearted thoughts.

What to do when our efforts are rejected by the marginalized.  Where to start to begin to answer this?  Initially, I just want to scream because we Christians (what I really mean is me) are so selfish, we make everything about ourselves.  The world is full of people who are suffering and we want to know what to do when those who are suffering reject our efforts to help.  Here’s what we do:  we quit making this about us, we keep trying to help, or maybe we accept that they don’t want our help and we leave them be in peace instead of trying to control them.  Actually, I don’t know what we do.  But this isn’t the part of the question i care about.  It’s just the part that triggered me.  Initially.

Let me back up to the topic of this workshop (which was really a good workshop, despite how I might have been triggered by this question).  Solidarity with the marginalized.  The marginalized.  For the purpose of this workshop, the assumption was made that the marginalized meant those people who were suffering in one way or another.  People living in povery, people suffering from abuse, people caught up in addiction, people with mental illness, etc.  People who by the definition of middle class american culture, were considered on the “margins” of society.  This assumes that the core of society, those who live in the the middle of our imaginary diagram, are the ones who don’t suffer, the ones who are considered well funtioning.  The ones who have jobs, homes, good health, etc.  And the people who don’t live like that, such as the homeless, the drug addicts, and the convicts, they are living on the margins, which is why we get to refer to them as marginalized.  Because the unspoken goal of this imaginary diagram, is those of us living in the core should be attempting to help those who live in the margins, trying to fix them so they can live in the core like we do.  And let me clarify that our speaker never said anything close to this, these are just the ramblings in my head that were triggered by the simple question another participant asked.

So here’s my issue:  while we might have this definition of the marginalized according to the middle class american culture, what if we changed the backdrop?  What if instead, we tried to define the marginalized in the kingdom of God?  What would that look like?  I don’t think it would look at all like the imaginary diagram I described above.  In fact, I think the core might be filled with the same people we define as marginalized in our worldview.

It takes my memory back to my twenties, when i had the opportunity to visit several other countries through short term mission experiences.  I remember being in the streets of Haiti, playing with children who lived in extreme poverty.  Children who lived in one room homes with dirt floors, who had no toys, and yet lived days full of laughter and joy.  They were being raised by parents who were so in love in Jesus that they rose early every day, before the sun, to gather together to pray for others, lamenting loudly in the streets, filling the air with their prayers and their praises.  The children spent their days playing on the streets and attending one room schoolhouses, doing chores.  But they were happy and full of joy, loving Jesus.  And I think of the kids I knew back home.  They had all kinds of material possessions, yet most were not nearly as happy as these kids I watched in Haiti.

And then i remember the orphanage I visited in India.  We attended a performance that the kids put on and then had the opportunity to interact with the kids and other adults for awhile afterwards.  I remember talking to one of the adults who was also at the performance, and found myself explaining our system of foster care in the United States.  How we have worked so hard to not have orphanages because we believe children thrive in a family environment.  And yet, as I listened to myself explaining this, I was watching these kids at the orphanage, full of laughter, well behaved, attached to their caregivers at the home, and arguably, doing quite well.  And then I thought about the kids I knew in foster care, and the many struggles they have.  I remember thinking that maybe our way isn’t the best way afterall.

Those were some of the first experiences that began to shape my understanding of the differences between the values/goals/purposes of the kingdom of God compared with those of the culture in which I was being raised.

Within my professional life, I am a part of many conversations about the marginalized, and as a secular business I always understand who that term is referring to, those living on the margins of the core of todays society.  But in a Christian setting, I think this definintion probably changes significantly if we are looking at the world through the framework of God’s kingdom.  In God’s kingdom, the core is more likely to consist of those whose souls are purely devoted to Jesus, and they would likely include many who live in poverty, many who exist in suffering, many who would be defined as marginalized in a secular sense.  Because the very nature of the things that make them marginalized in our culture, the things that cause suffering in their lives, may be the very things that draw them closer to God, and bring them to exist at the core in the God’s kingdom.  Maybe the marginalized in God’s kingdom are the people like me, the ones whose focus is less on Jesus and more on paying my mortgage, achieving success in my career, accumulating clutter that keeps me distracted.  If that’s true, and I kind of think it’s probably at least close to being true, then what right do I have to be upset when I am rejected when I offer help to those who are suffering?  I might be the one who needs help, at least in a spiritual sense, more than anyone.

I still have a million thoughts about this, and about the act of being rejected when we offer help to those in need.  As someone who has people in her life who struggle with addiction, I consider myself a bit of an expert in failure and rejection when it comes to offering help.  If anything, it’s been a great opportunity for God to teach me that I don’t have all the answers, that my way isn’t necessarily the best way, and that I cannot control others.  I have so much to learn.  And so many more thoughts, for another time.

 

 

 

Ash Wednesday 2018

Ash Wednesday.  I like Ash Wednesday.  I like the idea of entering into a time of preparation, of reflection, of drawing close to God.  I went to church early tonight so I could enjoy a little bit of peace in the sanctuary before everyone arrived.  Time to just be still and slow down in the midst of the busyness of life.

I’m finding myself particularly reflective this year because I am nearing the one year anniversary of my cancer diagnosis.  I didn’t really think it would bother me since my recovery has gone well and I haven’t really thought about it much since I recovered from surgery.  But lately I’ve been finding myself feeling anxious, thinking back to what I was doing a year ago.  Last year Ash Wednesday was on March 1st.  My doctors appointment for my annual mammogram was on March 3rd.  Followed by lots of appointments over the next month, and surgery on April 7th.   It was a scary time for me, although everything worked out well in the end and I’ve had no problems since.  But I feel teary just thinking about how fearful I was.

I was sort of hoping cancer would be a new start for me.  That it would scare me into doing things differently, taking better care of myself, spending more time nurturing my relationship with God.  But here I am a year later and not much as changed, other than my chest got a lot flatter!  I feel tired, worn down, sick (sinus infection, I think), and ready for lent to begin.  Ready for the structure it provides to encourage my soul, to welcome my soul, to allow my soul to reflect and start anew.

Create in me a pure heart, O God, and renew a steadfast spirit within me.  Do not cast me from your presence, or take your Holy Spirit from me.  Restore to me the joy of your salvation, and grant me a willing spirit, to sustain me.  Psalm 51:10-12.

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.

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.