A Husband’s Love

March 2, 2013

I was contacted through my personal blog by Cameron, a husband who became a caregiver to his wife, who like all of us who blog here became very ill.  He asked me to post his short story, and here it is.

Cameron’s Story:

 

Coming Face to Face with Reality

The gift of life is fragile and few may realize just how precious it can be. On November 21 of 2005, my life changed forever as it was the day that I had found out my wife Heather had malignant pleural mesothelioma. I went from husband and father to now a caregiver. Heather and I had just celebrated the birth of our daughter Lily several months before and had been planning our first holiday together as a family when our lives were turned upside down.

I was thrown into my new role as caregiver immediately. Our physician informed us about mesothelioma and what it entailed. He also gave us an assortment of treatment options, and I had to guide Heather toward making the first of many decisions. We ventured off to Boston to see Dr. David Sugarbaker, a doctor who specialized in mesothelioma.  This began a long a difficult journey to rid Heather of her cancer.

The months that followed were a blur as our normal routines turned into chaos. Heather and I had held full-time positions before she was diagnosed with the disease. As we began our battle together, Heather could no longer work, and I could only work part-time in order to care for her and Lily. We were kept busy with physician appointments, traveling back and forth from Boston and taking care of our daughter Lily. My list of duties exceeded my ability to get things done, and I quickly became overwhelmed with responsibilities. I was kept awake by endless worry. What if Heather died? Would we be able to stay afloat financially? Would I end up a broke widower with a young child to care for? Feelings of helplessness overcame me on many occasions, and I had to find strength within myself to stay positive for my family. Not only did I want to fight for Heather and be her rock, I needed to be just as strong for our daughter Lily.

Heather and I had a wealth of family and friends who helped us every step of the way with everything from words of encouragement to monetary assistance. Going through a difficult ordeal such as fighting cancer is painful and if anyone is kind enough to offer their assistance, you need to take them up on it. I learned the hard way that there is no room for pride or stubbornness in a battle with cancer.

The job of a caregiver to someone with cancer has an endless supply of highs and lows. One of the best pieces of advice I can give to others in my position is to never give up hope. There will be difficult moments, but you have to remember to dig deep and use every ounce of strength you have to remain positive.

Heather went through mesothelioma surgery, radiation and chemotherapy to fight mesothelioma and despite the odds, she was fortunate to conquer this horrendous disease. It has been seven years since her initial diagnosis, and I’m proud to say that she is cancer free today.

I was taught courage, strength and how to balance chaos throughout this ordeal, and I chose to go back to school full-time to study Information Technology. I graduated with honors and was chosen to speak at my graduating class. I relayed to my fellow classmates my difficult struggles and the importance of believing in themselves. No matter what life deals your way, you should never give up hope, and always keep fighting for the ones you love.  

 

Thank you Cameron for loving your wife, and for taking on the very challenging position of caregiver as we here understand what a tough job it can be. 

 


Healing so far so good (by Lyn)

November 22, 2011

I know I am not much of a blogger these days.  I even took my personal blog down while I work on a different one, but I am not finding the desire to work on it.  I kind of put myself out there to the world, cancer and personal warts and all, and am going through a phase of privacy.  I still want to share and support others, but I find that I have this deep need to be ‘normal’ for a short while.  I’ve been focusing on things like playdates and moms nights out, and going back to school for a different degree, etc.  I felt guilty for not keeping up with my cancer pals like I should, and then I remembered that no matter what, I will always belong to this community.  If we all lived in the same neighborhood, I guess my role would just change from a weekly meeting to dropping off food a couple times a month.

For an update, I’m 2.5 years out from my IBC diagnosis.  I had a double latissimus breast reconstruction in July and I had my last expansion last Monday.  The next step is healing and letting the radiated skin continue to change and heal, then we will do a fat injection.  Though I’m not a fan of surgery by now, I’m kind of looking forward to the removal of fat from my stomach and putting it in my boob.  Then it will be another 6 months after that I hear, when we will attempt the implant exchange.  I’m fine with taking the time to make sure it’s done as best as it can be.  I can see the visual changes in the tissue on my left side change weekly, and hopefully by the time the implants are in it will be supple enough to pass for a breast.  The good news is that I’m no longer calling it a ‘frankenboob’ which my plastic surgeon appreciates.  I’m taking pictures along the way and will publish a photo show at the end of it all.

My oncologist left the practice a while ago, and I finally met with a new one last week.  We’ll see how it goes, I know I don’t have to explain to you all how it is meeting a new doctor unfamiliar with you much less wondering if they are familiar with your disease.  Other than that, I’m good.  I find myself relieved the older my children get, my 6 year old son is in first grade and my daughter will be 5 on Valentines day.  Now that there is a small hope they will remember me if I die tomorrow, I relax a little.  Anyone play bunco?  I played that for the first time last month and it was fun!  See, that’s the type of thinking my brain goes to these days, I think I am serioused out.  the death of my mom from cancer followed by my own diagnosis a year later at age 30 followed by my marriage falling apart, I think I’m done.  I want to spout something wise, but I end up thinking ‘hey let’s make cookies and watch a good movie’ instead lol.  It’s a phase I know, but as someone who’s gone through a LOT of phases, I can’t say it’s any better or worse than a cancer focused one, it’s just different.  I wish you all lived closer so we could have a huge cancer warriors only bunco night complete with cookie exchange!  Then I could combine it all and feel somewhat normal again:)


Hmm…. a rambling update of sorts (by Lyn)

August 20, 2011

I just want to first comment on the recent posts from these lovely ladies.  I can relate on so many levels to it all though I am in a different phase currently.  There was a time when I was first diagnosed with IBC that I wanted to talk about death, all I could think about was life in a spiritual fashion because I didn’t know if I would beat it.  My mother had just passed away a year before from cancer and I watched the last breath leave her body, so the heavy thoughts of the seriousness of IBC weighed heavily on my heart.  Then I remembered HOPE, and my fighting spirit kicked in and I focused on beating it.  Not necessarily on living a well rounded life at the time, I was too scared for that I think, but I did have hope and I did feel like a warrior.  A lone warrior LOL.  My life quickly changed from average life working full-time with a 2 year old and 3 year old happily married to unemployed, very sick, and noone around me understood.  The people that were supposed to ‘get it’ turned into confused weak aliens and my new support system was a world of women online that I had no idea even existed and most of whom I still haven’t met in person.

I actually had to shut out family members who weren’t positive.  I simply said, if you can’t support me as much as some stranger I’ve never met, don’t talk to me at all.  Fear is a powerful thing, and when I’m scared I am sort of like a feral cat backed into a corner and if you’re not a friend you were an enemy.  Right?  No.  Necessary?  Possibly.  There’s a lot that I look back on and regret from the first year of my cancer diagnosis, but I have to be very gentle with myself because my support system wasn’t good.  We had no guideline or role model to show us what to do, how to help each other.  The growth I’ve experienced is that it isn’t their fault.  It wasn’t their fault.  The desire to support me was there, but it wasn’t coming in the way that I wanted or needed so I couldn’t see it.  Now that time has passed I have since found understanding and reconnected with said family members who were more than happy to come help me at my recent surgery.  I vowed this time, to recognize the intent behind people’s actions and go off of that.  I’ve learned to have understanding for others looking in at me from the outside.  I probably scare the shit out of them.  A 30 year old with 2 small kids going through everything we warriors do, and doing it independently and fiercely.  Yes, I’m sure looking back they saw me as pushing them away and their own fear stopped them from meeting me where I was, and my own desire for survival on my terms stopped me from including them in my battle.

Needless to say I have learned a lot about myself and about others since my diagnosis.  Life, the meaning of life, the ‘right’ way of life is something I think about all the time.  I have yet to find a place where I am comfortable just being.  It seems like I keep pushing through pain to find the space where there is no more pain and it won’t come.  Sometimes I ask myself why me, why now, why not.  Lately I’ve been looking to the future a lot, praying a lot, begging the universe for some release.  Then I remember that I have the power to focus on hope, healing, and happiness.

I’m not talking about my cancer with the last paragraph.  I haven’t said as much on my blog, but I found out that my husband- who I truly love with all my heart well before cancer- was cheating on me when I was battling for my life.  I found out this year, and it’s been like getting a cancer diagnosis all over again.  Actually I would prefer chemo some days.  So while at first I shut him out, I’ve been allowing him to talk to me and to listen and then I talk.  It just feels like pain.  Healing, sure.  Cleansing, sure.  But pain, more unnecessary pain that I don’t think I deserve and that makes me angry, which makes me frustrated, which makes me sad because I can’t control it.  More and more I learn about myself and at the same time about others’ limitations.  He has stepped up to the plate at taking my punishiment and wrath and making it right but will it ever be enough?  I don’t know.  I can’t say, I can’t control how I feel.  I would give anything to be nonchalant and flippant and not care.  I would trade anything for that.  But I’m stuck here in the pit of I give a shit and also, responsible for what happens next.  Do I want to risk getting IBC again and not have him in my life- this man who I love and is remorseful- or is it – do I want to risk getting IBC again and be still married to a man who betrayed me when I needed him the most.  Or is it, do I take yet another leap of faith and trust (but verify!) that this person has grown himself, found his own love, and will never hurt me again and jump in with the hope that IBC will not come knocking on my door again but if it does my marriage will not be an issue of it.

I don’t know.  It’s too much, it’s overwhelming.  The gift and the curse of cancer is that we know how precious life is.  How much time can I waste on anger or hurt- even when it hurts so much all the time?  That becomes the question.  I imagine that if I was a normal 32 year old without cancer or parents gone, and everything was fine I would walk away with my head high and my hair flapping in the wind giving him the middle finger for not seeing how awesome I am, not caring what he might have been going through or what led to it.  But now… now I know unfortunately that life is bigger than me.  It’s not all about me, even when it should be.  Ah well… that’s my rant.

Physical update, I had a double latissimus breast reconstruction 4 weeks ago.  Last weekend I ended up with a bacterial infection and almost got admitted again.  Every day this week I have had to go into the plastic surgeon’s to have my back drain tube wound opened and drained and packed because it was fluid that collected there that caused it.

My left cancer side ‘frankenboob’ is not doing well.  It’s failing and the surgeon says we have to do another surgery in a few weeks when I’m better this time taking fat and skin from my stomach.  Hopefully it goes better this round.

I am NED still according to the pathology reports from the samples the surgeon sent when he did the reconstruction.  So I have that to be thankful for, and I am.  It is possibly one of the main things that keeps all the pain balanced, the physical pain and the emotional pain… that no matter what I’m still for now NED and still have a chance to see my kids grow up.  Anyone else sometimes feel like, is this really my life?  I know I do, but thanks to cancer, I’m thankful for most of it and the parts I don’t like I have hope I’ll figure that out in time.


Clinic Offers Novel Therapies for Inflammatory Breast Cancer Patients-Lyn

March 2, 2011

Hello everyone, I have been going through a whirlwind of emotions this past 6 months and I apologize for not posting.  I read, and I pray for each of us, and my fellow bloggers are always in my heart.  I received a comment from an intern at MD Anderson earlier today that I thought I would share… well the link to the information she wanted to share with us, not the whole comment.  You can view that at my blog if you like, it does have her phone number if you had any questions. 

http://www2.mdanderson.org/cancerwise/2011/02/novel-clinic-offers-novel-systemic-and-locoregional-therapies-for-inflammatory-breast-cancer-patient.html

If this has already been posted, I apologize for that too… part of being out of the loop I guess.  I had a PET and CT scan earlier today, please send healing vibes my way that I am cancer free.  I will be 2 years from diagnosis next month.

Lyn


A milestone by Lyn

July 9, 2010

Well  I made it.  I finished my year of Herceptin last week.  I knew the day would come, but I almost can’t believe it.  I see my oncologist again in 3 months, and I admit I am looking forward to the break.  Even better, I am getting my port out in 2 weeks.  I can’t wait for that either.  As for what is next, they tell me I am cancer free, but you all know how that goes, and how fearful it is to worry about a recurrance.  But I am going to be positive, and try to be a bit more spontaneous in the coming year.  I have been tied down to doctor appointments and check ups and physical therapy and recovering, that it is all I have been able to think about, but now I am going to attempt thinking past IBC and the possible recurrance. 

Another big decision, dh and I decided recently to put my reconstruction on hold until my daughter is in kindergarten.  She is 3, so about 2 years.  My skin is so damaged from twice a day radiation that implants are not an option at this time anyway, so the only way to be reconstructed is with the TRAM or DIEP and that is such a huge surgery and recovery.  It’s not sensible with 2 very young children and noone to help out while I am recovering.  Part of me is nervous about the decision, but even more I am relieved because I don’t think I am up for such a large surgery so soon after the last one. 

If you are Her-2 positive, ask your doctors about joining the Neratinib Trial.  It was presented to me, and I have decided not to do it.  But I think it will be very beneficial and help us combat cancer.  My decision was a personal one, but I fully support the trial and believe it will help extend our lives even further.


An update

February 20, 2010

I posted on New Year’s Eve that they found a lump in my chest, and my worries associated with it.  Well I did end up having surgery last week – another surgery, I am sincerely sick of being cut- and I’m relieved to share that it was benign.  It was just fibrous tissue growing.  They didn’t think it was cancer going in but had to check.  I was relieved, but only slightly.  I am resigning myself to the fact that this is my life now.  I am now in the elite group that gets to say things like ‘oh this is just a little surgery’.  That’s what my oncologist said the week before when I expressed anxiety over it.  I suppose compared to the double mastectomy and hysterectomy I had, yes, it was just a little surgery.  I thought I would be happier when the surgeon called to tell me the good news, that it was not cancer brewing its ugly head again.  I was happy, but I couldn’t help feeling like I was just lucky to get a pass.  I couldn’t help but feel like, I’m Ok – for now.  I promise I’m not negative about my situation at all, I do feel very lucky most of the time.  I guess I’m only sharing my fears, how I really feel about it.  My 1 year diagnosis anniversary is in April, maybe as time goes on I will not feel as on guard as I do.  But – for now- I appear to be cancer free, and that is indeed something to celebrate.


New lump found today-2009 wins afterall

December 31, 2009

(by Lyn) I have this image of a boxing ring in the middle of a huge auditorium and in one corner is the year 2009, and on the floor knocked out cold and bleeding on the mats is me. It’s doing a victory dance with its arms in the air cheering, I WIN I WIN. I think it heard me bashing it earlier today, heard me talking about how I cannot wait to say good riddance and it decided to get in one last knockout jab before the new year.

I had a routine post-op appointment with the breast surgeon earlier today, I was looking forward to seeing Kate because I haven’t seen her since my left drain was removed. My oncologist suggested I talk with her about my joint pains and see if she has any ideas (she’s very involved with her patients unlike many surgeons), and to show off my radiation wounds that are still present. I assumed she would check out my chest to make sure I’m healing fine and send me on my way. What I didn’t see coming during the check-up was her fingers stopping in a specific spot on the inner ridge of my right chest. Right on the seam of my bi-lateral cut. Then she said the words we’ve all heard: “It’s probably nothing, but there is a small lump present that I don’t remember being there. I’m sure it’s nothing Lyn, but I don’t like it when I don’t remember these things so let’s do an ultrasound right away to be sure. If they think it’s suspicious I’m ordering an immediate biopsy to follow.”

She wanted to do it today, but I was unable due to having the kids in the car with hubby who had to get back to work and said Monday or Tuesday would be better for me. They said they will schedule it and get back to me. Walking out the door she said ‘well it’s not Inflammatory, whatever it is’. I know it’s illogical to be worried about having another cancer so soon, or to think that the IBC has trekked its way across my chest but I can’t help but be worried and mostly frustrated because I JUST HAD A DOUBLE MASTECTOMY!!!!! I JUST finished twice a day radiation. I just finished hell year. I am supposed to be DONE with ultrasounds, and biopsies and ‘possible cancer’. This is the exact reason I had the elective bi-lateral and full hysterectomy. To avoid this situation. I assumed one might happen in the future, but not today. Not right now. I can’t frickin believe it.  I am going to assume it’s nothing and try not to stress this weekend, but the thought of going to the hospital to start this over again makes me nautious.  Everyone cross your fingers for me that her prediction of ‘I”m sure it’s nothing’ is exactly that this round.