This blog is not for the light-hearted or easily offended. If either one of those descriptions applies to you, i would suggest you start drinking before you read this blog. A sense of humor is suggested. If you don't have one that sucks for you … find one and get a life!

In which i explain Keely’s medical condition

 

One of the things about always writing “humorous” things is that occasionally you have something more serious to say.  I usually say the more serious things in opinion pieces or rants or generally making fun of something I think is stupid.  However, at times, the serious stuff that is actually occurring around me affects my life, my family, this blog and therefore me.

 

One such situation is my daughter Keely’s medical condition.  I use the word “medical condition” because honestly, I don’t really know how to describe it.  To explain how this condition is affecting her today, you need to understand what the condition is.

 

I wrote a post about it here and I will only do a general summation today.  If you want more information, please go there, as there is absolutely NO WAY that I’m explaining the entire thing from scratch.

 

Long story short:

 

She had a tumor in 2009, her sophomore year in college

It was in her pelvis

It wasn’t cancer

It was the worst benign tumor they had ever had at Duke

They couldn’t fix it because there was too much damage to the hip joint

She was on crutches for 6 months

They couldn’t do a hip replacement

They couldn’t do the bone graft

The only option was a pelvic replacement

That was a horrendous option for a 20 year old

They decided to wait and see

 

Then last summer Keely was between her junior and senior year at Duke and she was living in Washington, DC.  She did a lot of walking and she was in excruciating pain by August so we went back in for an MRI.

 

The tumor looked slightly more aggressive

But it wasn’t being so aggressive that immediate action was called for

They put her on Celebrex

They gave her Percocet

They told us to come back in 2 months

 

So last October they looked at it again and said:

 

You probably need surgery

We can do it Christmas

Or…if you can handle the pain…we can wait until after Graduation

You will only be on crutches for 4 months

 

Keely decided that there was NO WAY she could do crutches again at school and she would wait until after graduation.

 

This affected the job search, as she wouldn’t be able to start until September

It affected her activity level

It affected her life with the pain level

But she prevailed and carried on.

 

This past week we had a new MRI and herein lies the problem.

 

The tumor is stable right now.

It’s not aggressive

Therefore there is NO IMMEDIATE need for surgery

They also felt her pain was controlled on 400 mg of Celebrex a day

They recommended waiting 6 months AGAIN

So simple right? NO surgery? WRONG. NOT SO SIMPLE!

 

Because the honest to god truth is that the pain isn’t controlled.  She drives from one handicapped space to another. She doesn’t do any activities that could possibly hurt her hip.  When I asked her “why the hell you don’t vacuum this apartment?” she informed me that vacuuming is too, too painful.

 

It’s my opinion that she’s living a life to avoid all pain therefore what happens when she has a job and is on her feet all day?  What happens when she’s not in the bubble that is Duke University?  More importantly, living with a major surgery over your head is a big deal.

 

When asked what they would do, the surgeons admitted that “this might be Keely’s new normal and she could be in chronic pain the rest of her life.”  There is the distinct possibility that she has the entire surgery and it doesn’t help the pain level.  What?  That’s awful and something that had been briefly mentioned but it was certainly a huge blow.

 

However, at some point in the future, she will need this bone graft because at this point, they can’t even do a hip replacement since there is a huge hole in the pelvis so they can’t drill into it.

 

In other words, they have no idea.  They then explained that they had “never expected her to heal even this well” and that “they had never seen anything of this magnitude at Duke at all.”  To say this news was decimating would be an understatement.  You see, normally a tumor in this area or of this size is cancer so there is no decision to make. You have no choice but to take it out. Of course, we’re thrilled it wasn’t cancer but it was so destructive that nobody actually knows what to do to fix it; especially in lieu of the fact that the patient is only 22 years old.

 

After much angst, I asked the surgeons (there are two) what they would do NOT if it was them personally, but if it was their 22 year old daughter who was just graduating?  You see, the recovery for the surgery is 4 months on crutches.  She will need a lot of help.  She was planning on living at home this summer for the support we could provide.

 

The worst-case scenario to me is that she goes and gets a job and in 6 months, her hip is killing her. Then what does she do?  She might not be living around us and how could she get the recovery time off?  I felt that this was the window of opportunity right now and she was “between” stages so we should get it done.

 

Beyond that, wouldn’t it be better to know that this pain is what is to be expected for the rest of your life rather than hoping it could be fixed?  I would want to know. Keely wanted to know.  “If this is my new normal then I’ll deal,” she said, “I just need to know that.”

 

So there you are.  We were there for 3 hours and it was honestly the toughest decision I’ve ever been involved in making.  She could go through the entire horrific surgery and nothing could change or perhaps it will help her pain.  It is also possible, albeit the chances are small, that this procedure could actually set her back.  There is literally no way of knowing.

 

These “what if” decisions are difficult to make when you’re 22.  If the tumor were acting aggressive then it would have been a no brainer.  They were advising we wait 6 months and recheck the MRI.  Apparently, living on between 400 and 800 mg a day of Celebrex is no big deal.  I really don’t know as there’s no “right” answer.

 

We have decided to go ahead with the surgery on May 21st.  At least we will know what the child is dealing with for the rest of her life.  While all her friends have gone out and gotten jobs, Keely feels like a failure for not having one.  One of the problems was that she just didn’t know what was going on physically so making a decision and committing to a start date was virtually impossible.

 

I hope that the surgery helps her pain. Even more, I hope that it gives her a solid idea of what she’ll be dealing with the rest of her life because only then will she be able to move forward.

 

Keely is planning on writing a book during her convalescence.  She’s already written a screenplay for Book one of the Trilogies and I’ve read it, it’s good.  Perhaps this opportunity will actually become something more if the book is as good as the screenplay.  Perhaps taking this time to try to become a writer will be the best thing that ever happens to her?

 

Truly I don’t know.  The first surgery was one of the most difficult things I have ever been through. Watching your child in extreme agony with absolutely no recourse is awful and at least this time, I know what to expect.

 

So, that’s what I’ve been up to.  Beyond that I’m still blogging, not painting much and oh yeah, I wrote a book. It’s an 80000-word book that I am now cleaning up and editing.  It’s about Daniel, about hope, about the future, about overcoming circumstances and labels and I am planning on giving half the proceeds to Autism intervention however, that’s an entirely different story now isn’t it.

 

Hope all is well with you.  I have two graduations coming up, one from college and one from high school.  My other daughter is about to take MCAT’s and it will be the single biggest test of her life.  Transitions are everywhere and as always, I’m trying to take them in stride.

 

Hope all is well with you guys and if you have questions, feel free to ask.  I’m just telling you about this because, well, I tell you guys everything and I’m sure this will have a profound affect on my attitude and my moods.

 

Thanks,

 

Lynn MacDonald

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38 Comments

  1. Mayor Gia
    April 24, 2012

    Ugh, I’m so sorry your daughter is going through that! What a painful (physically and emotionally) issue to deal with. I really hope this surgery helps things.
    Mayor Gia recently posted..Sometimes, I Get the Feeling Boyfriend Doesn’t Want Me to Go to the Hardware Store with Him aka the “Helping” Post.My Profile

    • Lynn
      April 24, 2012

      thanks…just thought i should explain stuff in case there are absences

  2. Tina
    April 24, 2012

    How truly awful! Sending many thoughts to you and especially Keely. I cannot begin to imagine what being in so much pain at 22 years old is like. Whilst I get that the surgeons don’t really know what to do for the best, the idea that she is “managed” on her current medication is ridiculous.

    My friend spent 2 years in a limbo of “It might be Multiple Sclerosis, it might not” and it drove her insane. Mind you, she is a control freak and spent those 2 years trying to control the MS to no avail but once she was given the definitive “this is your new life, yes you have MS and you will not get better” she managed a lot better and learned to accept it. Like you say, sometimes knowing the future is part of the battle.

    Sometimes I think the surgeons talk the talk but until they have been in that much pain they can’t really comprehend what it must be like for Keely. I am sure this is not the case but the surgeons almost seem to be saying “Well we aren’t really sure what to do so we will wait and see” which must be SO frustrating for both of you.

    She sounds like a fighter and in her position I would have opted for the surgery. Hope everything goes as well as it can for Keely.
    Tina recently posted..Is there anyone dizzier?My Profile

    • Lynn
      April 24, 2012

      thanks so much. I suppose that, as surgeons, if they can’t actually fix it they don’t want to go in. Also, these guys are in surgical oncology and they are so used to making definitive decisions that this one has them totally stumped.

  3. Vidya Sury
    April 24, 2012

    Lynn, This is a tough situation. But as I was reading your post, this is what came to me strongly. The surgery will go well. The pain will go. Keely is going to be fine. With her writing, she’s going to be very busy, now, during convalescence and when she’s well. Get ready for good things.

    I am going to include you and Keely in my morning prayers and I have a very strong feeling all will be well.

    I just love your blog, and through your wonderful sense of humor, I almost feel like we know each other. I hope you don’t think I am crazy – after reading what I wrote above. You take care of yourself. You ARE among my favorites, you know!

    • Lynn
      April 24, 2012

      Thank you so much…I appreciate your loyalty :)

  4. Tex
    April 24, 2012

    Lynn, you don’t mention getting a second opinion….maybe another large medical facility HAS seen this before. Have they tried chemo even tho it’s not CA to try to shrink the tumor? Or steroid injections to try to ease the pain and swelling?

    • Lynn
      April 24, 2012

      They’ve talked to people all over the United States about it. The hole needs to be filled in so chemo won’t help but thanks. If surgery doesn’t work I’m sure she will be on steroids

  5. tracy fulks
    April 24, 2012

    Lynn, I greatly appreciate your ability and strength to write not only the humor in life, but also to have the courage to write about the real stuff too. I am terribly sorry for what your daughter and family has to go through here, there is nothing worse for a Mother than seeing your child in pain and not being able to fix it.

    For what it’s worth I think you’ve made the right decision, and I agree entirely with what Vidya said, I was struck with the same feeling. It’s easy for us to hide behind our humor much of the time, it’s a beautiful defense mechanism. But it speaks volumes of our true character when we are faced with a situation in which we must step out from behind the comfort of our humor and write about our pain. I sincerely wish the best for Keely, and for your family. Keep writing, both of you, it will keep you sane.
    tracy fulks recently posted..go to jail, ding-dong.My Profile

    • Lynn
      April 24, 2012

      Thank you…that means a lot to me. I think something that has such a large impact has to be shared

  6. Jana (@jana0926)
    April 24, 2012

    She’s going to do great. You are, too. I hope the surgery helps and that her book takes her mind off the recovery. Keep us posted.

    • Lynn
      April 24, 2012

      Thanks…hope you’re doing well

  7. By Word of Mouth Musings
    April 24, 2012

    You are not supposed to make me cry … hope you are not at the gym yet.
    Since I am calling. Yes, don’t fall over, its been nuts here.
    Remember your bff ;)
    By Word of Mouth Musings recently posted..Infertility is a disease.My Profile

    • Lynn
      April 24, 2012

      I love you

  8. Jester Queen
    April 24, 2012

    I am completely bowled over here, too. How they could possibly consider just leaving her out there?? I’m glad you’re going forward with the surgery.

    Also, Keely cannot possibly be a failure. Job status does NOT dictate one’s success level. She’s not planning on lying around eating bon-bons. She’s even planning to write. Cool BEANS!!
    Jester Queen recently posted..Guest Post: AboveboardMy Profile

    • Lynn
      April 24, 2012

      Thanks…she is writing a trilogy

  9. MommaC
    April 24, 2012

    Poor Keely! I think having the surgery is the decision we would make too. After all there is a need to be able to proceed with life and obviously she cannot without knowing where she stands. I hope the surgery goes well and that she gets relief. She’s so young to face all this, but she sounds like a real trooper.

    Did you go for a second opinion anywhere?
    MommaC recently posted..Falling ApartMy Profile

    • Lynn
      April 24, 2012

      Thanks…we agree with you. Whatever happens at least we will know

  10. Alaina
    April 24, 2012

    I hope the surgery helps. I couldn’t imagine living with pain for the rest of my life. Sending positive vibes to you and your family…
    Alaina recently posted..Four-Legged Love.My Profile

    • Lynn
      April 24, 2012

      Me neither and I feel guilty saying that

  11. Julie
    April 24, 2012

    Wow. As horrific as my 3 surgeries and recoveries have been, the thought of a reverse situation where I watched my daughter suffer through it is mind boggeling. Your strength and attitude are truely amazing. The two of you will be in my thoughts and prayers.

    • Lynn
      April 24, 2012

      Thanks Julie…it’s quite frustrating watching the situation

  12. word_vomity
    April 24, 2012

    All the hugs, Lynn! All the hugs!

    • Lynn
      April 24, 2012

      Thank you

  13. Melanie
    April 24, 2012

    I am keeping your daughter and family in my thoughts and I hope that the surgery at least relieves some of her discomfort.

    • Lynn
      April 24, 2012

      why thank you…i really appreciate that

  14. Theresa
    April 24, 2012

    I was so happy(relieved) to get to the end of the post to see your daughter is moving forward with the surgery. It is so important when leaving college, for a young person to know their “lane”. Some of her friends will find jobs. Some won’t.

    A huge bump in the road, but… perhaps a blessing in that she will feel better, and more able to cope. Such a strong young woman! Even if she had gotten a job, she would still have this darkness looming. Better to take care of it while she is still under your insurance. She wouldn’t want to not get a job, based on insurance needs!

    I stand with you in hoping for recovery, and less pain.

    • Lynn
      April 24, 2012

      thank you…that was a very sweet comment

  15. Rachel
    April 24, 2012

    Thoughts, prayers, and hugs being sent your way for you and Keely. Hoping that the best of outcomes happen, and that her pain goes away. It’s never easy watching your child in pain, and I feel for you!

    • Lynn
      April 24, 2012

      thanks…i appreciate that

  16. Fearless Fibro Warrior
    April 24, 2012

    Wow. Chronic pain sucks at 39, I can’t imagine 22. I know it was an incredibly difficult decision, but knowing what is in store for her will help. I know for me, not knowing what is the issue is so much worse.

    Here’s to you, thinking good thoughts for a quick successful surgery, with a big shiny light at the end of the pain tunnel!

    • Lynn
      April 24, 2012

      Thanks…appreciate the comment and warm wishes

  17. Faith.The Blond.
    April 24, 2012

    Having watched my youngest daughter go through HELL the first 7 years of her life (lymphagioma and lead poisoning) I can truely relate to how you feel as a parent to just NOT KNOW. We, as parents, are programed to “make it better” for our children, and when we can’t we feel frustrated and helpless, which in turn is felt by out children (no matter how old they are).

    I too feel you made the right decision for Keely and I have marked my calender for May 21st so that I can be sending prayers and good thoughts your way. I do hope that you will keep us posted on her. And I also hope that you are able to keep your sanity through all of this as well! <3

    • Lynn
      April 24, 2012

      Thanks so much…and I’m sorry to hear about your daughter, that must have been awful

  18. BalancingMama (Julie)
    April 24, 2012

    Wow, you have one tough daughter! I will keep you in prayers. I hope that surgery is a means to some answers, and especially to relieve the pain. Best wishes to her – and you too!

    • Lynn
      April 24, 2012

      Thank you…I appreciate it

  19. Sophia Hayes
    April 25, 2012

    As a parent, especially as a mother I understand what you are going through now. Just do not lose hope and always think positive. Prayers are powerful.
    Sophia Hayes recently posted..payday loans new yorkMy Profile

  20. Carol
    April 26, 2012

    Just always pray and have a faith God has a plan for all things happening to us.Think positive!
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