One Year Follow Up

The following is a post written and published on Facing Cancer’s website where I am honoured to be a writer. You can find the original post here.

The ticking of the clock is getting louder as the days pass. This week it will be 10 months since I found out I am in remission from advanced Thyroid Cancer.

I was diagnosed in June of 2009. I sat the doctors office in shock, even though I had already self diagnosed, and knew in my gut it was Cancer. But even though I told myself I was prepared to hear bad news, it was still a devastating blow. It was explained to me that if I had to have cancer, this was a good one since most people are treated and recovered very quickly. What I didn’t know until much later was that My entire thyroid was swallowed up by the disease and that I had lymphatic metastasis. So my journey was much longer than any of us could have expected. I lived in a chronic state of illness for 2.5 years. Until the day I sat in the doctors office, once again expecting bad news. My mom was with me for the first time ever, so I grumbled through obligatory introductions. My doctor looked at my mom and shook her hand politely and said something to the effect of; it’s nice to meet you, but we won’t likely have another opportunity for about a year. I felt immediate panic, thinking she was about to announce she would be taking a leave from her practice, leaving me in the lurch, as my previous doctor had. She asked me to have a seat and then went over the numbers from my recent labs and my whole body scan. I sat there, blinking slowly, trying to understand all the numbers, when my mom, seemingly understanding my confusion, piped up asking what it all meant. “It means we’re finally at a low enough level to consider Coleen to be in remission”. That happened on Jan 3rd 2012 and was the best belated Christmas gift I could have received.

I’m thrilled that I am counting it and remembering every month. I’m not sure that I’ll ever forget how significant the 3rd of each month is. You’d think I would feel more at ease the further I distance myself from that date, but for me it’s quite the opposite. I live with the fear of recurrence in the back of my mind, gnawing at my happiness like a termite. It’s happening one thought at a time, but collectively the thoughts frighten me. The what ifs, and the panic every time a new “symptom” pops up. I can’t be the only one who feels this way, can I? I know it’s not healthy but it’s not a conscious choice I make.

Right now I’m in the countdown to my one year follow up. I have heard variances among fellow thyroid cancer survivors of what one year testing involves. So to be honest, I’m not really sure what to expect. This lack of knowledge adds to my fears. I have just reached out to my doctors to book an appointment to review my last set of blood tests and to discuss what we do now that the one year mark is nearly here. So I guess Until then it is simply a waiting game.

Can you relate?

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Unknowingly Unprepared

I have never really spoken much about death on this blog. Odd considering it’s something that was on my mind a great deal while I was ill. Those dark thoughts stuck with me secretly for such a long time. Recently I was in attendance She’s Connected 2012. The sessions had broken for lunch and I joined some dear friends in the boardroom for a quick meal. My friend Ann sat across the table from me chipper and vibrant, despite having lost her husband the past year, she seemed to be really flourishing at the event. Then a woman takes the stage for an impromptu chat. She was representing an author who penned a book about her experience after loosing her husband suddenly. Instantly I felt a bit sick and turned to look at Ann, only to find that the ENTIRE room had just awkwardly done the exact same thing.  I worried for her, I felt for her and I saw tears welling up in her eyes. This woman I thought was coping so surprisingly well was right back in that moment, immersed in her pain all over again.

I know the speaker had no idea the weight her words would hold for some of us who have grown to love and admire Ann. Nonetheless, I sat stone faced listening to her speak about how the author was so deeply unprepared. There was much she hadn’t done and much she had no idea how to do. My own situation bubbled up and I was then crying too. No longer out of sympathy for my friend, but out of anger towards myself because I had convinced myself that I was prepared in th event that I lost my fight with cancer.

In my guest post on Anns website I recount how terrible my situation was, and how selfish I was to have had cancer and not have taken care to properly plan for myself and my family.

You can read my post here: Unknowingly Unprepared

Journalling

Last Christmas I was given a gift by a woman I don’t know terribly well, though I wish that wasn’t the case. Despite that fact she seemed to know just what would easy my troubles at a time I was very low. For no other reason that pure unselfish kindness, she and her familysent my family a gift filled with many comforts. We appreciated them more than I could have expressed. When we opened the items I actually wept. It was if this woman had been living in my brain. For me the stand out item was a beautiful pink embossed journal and a pen with gorgeous smooth pink ink. I still had cancer and was experiencing a great deal of physical pain. While I’ve been blogging for many years I had never really taken pen to paper in that way before. I was certain that I would never journal since I blog, but I quickly came to realize that while suffering insomnia, that journal became my new best friend. Instead of going to bed with a brain full of worries, I was taking some time to disconnect from everything electronic and just write out what was troubling me. The deep stuff. Things most likely to not make it to my blog. I also began using it as a way to record my daily successes and goals for the next day even if they were as small as pushing myself to leave my house.

This gift has become my lifeline. As I draw near the end of the blank pages, their predecessors having been filled by my nightly unloads, I know I can’t let this end. I’m begining to feel a  sense of loss knowing that this one is coming to an end. So I will be out looking for a journal for when this one is finally finished. This one gift has given me something no other gift has. Release. Release from stress, and release from a life of insomnia. I can’t claim that I don’t experience those things on occassion still, but the first week after I began journalling, I could see an immediate shift.

To you, the giver of this gift, I hope you realize your kindness changed me. I thank you for that.

Has technology made journalling a dying art?

Have you even given or received a gift that made a difference?


2012 is bringing changes!

A tearful conversation with my mom about my recent emotions, as well as a candid one with my hubby, brought about a lot of thoughts on how I can feel better. I spoke to both of them openly about how hurt I had been by a couple of people I thought were friends. I can see very clearly they are not anymore, and was struggling with that. I was also struggling very deeply with mixed feeling after being cleared by my dr. Finding out my cancer was gone was really a shock to my system and I haven’t been coping as one would expect to such amazing, life altering news.

A couple of weeks have passed and I am not the big weepy mess of confusion I last wrote about anymore, but rather I am inspired to feel better by being better. Basically I am going to push down the negative thoughts and feelings and immerse myself in my ability to see the positive in any situation.

I don’t do resolutions but I decided after these conversations that this is what I will strive for this year.

  • I will no longer let bullies make me feel bad. I’ll kill ’em with kindness instead. 
  • I will stop worrying about how other people feel about me and learn to love myself again.
  • I will think of 5 things that make me smile every time I feel negative thoughts bubbling up  
  • I will push myself to see the good in every situation, no matter how tough it is.
  • I will allow myself to move past my illness.
  • I will begin making small steps to get out of my house more often, and work through the anxiety.
  • I will make myself a household binder to get myself on track and on a schedule.
  • I will continue being the best mom I can be and work towards being a less dependent wife.
  • I will actively work on my blogging and keep current.
  • I will make a plan on how to achieve my writing dreams and create a timeline to motivate me.
  • I will put positivity out in order to see it return to me.
It’s a list in progress as I am sure I will be adding things as my mind races with thoughts on self improvement. Even though it’s only been a couple weeks I have let a lot of negative things go. Like friendships that have clearly faded. I’m finally OK with that. I spent a lot of time pondering what I may have done wrong but now I know in my heart that it really doesn’t matter. Those people have shown themselves and my true friends are still right here with me through thick and thin they are the ones who deserve my focus.
Life has been much sweeter these past two weeks, and I know it’s only going to get better as I work to find a new, post cancer, normal.

Shouldn’t I be happy?

I can’t sleep. I feel ashamed of myself. I’m hurting emotionally and I have no reason to be.

I know that the fact that I am cancer free is still fresh news, but I think I should feel happy. But I don’t. I feel everything but happy. I feel sad, scared, depressed, anxious, and angry. Everything BUT happy. 

WTF is wrong with me? Am I broken? Who finds out their battle with cancer is finally over and spends 4 solid days crying? Me. Why? No idea.
I have kept this emotional upheaval a secret from everyone but then my mom called me and I completely fell apart on the phone. Granted there were other factors involved that had me feeling a bit emotional, but for the most part it was all over my confusion from being cancer free. I bawled while I talked to my mom, and she didn’t sound the least bit surprised that I was feeling this way. She was very kind and supportive of me, explaining that it was going to take time to sink in. 
All I know is I feel horrible for not being anything but happy. I’ll talk to my therapist about it and see if I’m normal or not. 
The honest truth is that I just don’t know what to do now. How do I move forward? Cancer has consumed my life, my calendar, my medicine cabinet and so much more, and now it’s just gone. So what now?

Depression

For years I kept all my issues to myself. Always remaining tight lipped and bottled up. I talked with no one but my husband. One thing I have learned from having cancer is that it’s ok to need help. Now more than ever I believe that knowing other people have walked your shoes and survived is very helpful. So many women have helped me though my struggles by sharing their stories with me. Whether it was Postpartum Depression/anxiety or cancer related. Every single person who has poured their heart out to me has helped me.

I suffer from depression and severe anxiety. 
Every. Single. Day. 
It all started after my Daughter “Roo” was born. In February 2008 the nurse called to come for a visit. “Sure thing! Come on over!” My husband was still home with me, having taken a month off to help me after a very difficult c-section. I remember greeting the nurse and welcoming her into my immaculate home. I had stayed up ALL night cleaning and making sure things were acceptable for her scrutiny. I was exhausted, and felt miserable but I knew it would pass so I plastered a big dreamy “I-love-my-life smile onto my heavily made up face. She sat with us, asking questions about the baby and her routines, and how my delivery was along with how I was healing. I spoke honestly about that stuff but everything else was a lie. When she asked if I felt down, I said no. When she asked if I was sleeping I said yes. When she asked if I had any unusual thoughts or feelings I said no. Then she moved to my husband and explained to him, not to me, what PPD was and what to look for. In other words she gave me the cliff notes version of what to keep hidden from everyone so they wouldn’t know something was very wrong with me. Then she smiled, said everything looks wonderful, wished us well with our newly expanded family and went on her way leaving little more than a card behind. 
Months went by and I remembered every little detail she told my husband to watch for, and those were the things I stifled. If I needed to cry I went for a shower so I could cry without glaring eyes. If I was feeling anxious over unfinished housework I would lie in bed breathing slowly and quietly until I knew the rest of the house was asleep then I would get back up and take care of it keeping a watchful eye on the time so I could make sure to get back into bed no less that 30 minutes before the alarm was to go off. In my heart I knew a good mom can get all the housework laundry etc done AND be an involved and active parent who plays with their child, goes for walks, and attends mommy & baby classes and regular playgroup dates. So that’s what I did. I played perfect mom during the day, and stayed up at night doing the chores. I rarely slept and that was ok, because I was honestly scared that “they” would take my kids away if I wasn’t doing everything right. 
Eventually I began having a hard time holding it all together. I can remember standing at the door, baby upstairs screaming and I was begging my husband to please just stay home. He brushed me off saying he needed to make money and couldn’t stay home. He walked out the door and I crumpled to the floor sobbing. I sat there for hours before I realized that if I left the baby crying any longer the neighbors would call “someone” and “they” would take her away from me. 
It got so bad that after living like this and hiding what was wrong for 8 months I had an emotional break. I totally lost it. After all was said and done I took to my local mommies forum and wrote this anonymously:

Hello- I have been feeling very out of sorts lately and I don’t know what to do.
I am a wife and mom 2 two kids. THey are the bright spot in an otherwise bleak day. My infant cries non stop and I can’t even step into the kitchen to get a drink without ear piercing sobs. I cuddle my baby and spend lots of time playing and singing etc but by the time DH gets home I really need a break from it and I ask nicely for a few minutes to myself to get dinner made in peace. My problem is that until recently I have been keeping up this front and faking that I am great when the truth is I am far from it. I am stressed out about so many things that I don’t know what the biggest issue is anymore.
My home life is horrible because of outside contributing issues from other family members. (My husband and kids are wonderful and I love them so much!)
Money is tight and I am scared of not making my payments.
I never get a good nights sleep and I am constantly do everything while I get no offers of help. Example: last week I broke down and asked DH if he could bathe the baby and he asked why I hadn’t done it earlier that day. I was super busy with groceries and the baby and dinner and housework so I thought it could wait until DH was home. I begged him to just give me a break. I didn’t have the energy to di ti myself and I wouldn’t have enough time in the morning to do it. He said no problem he’d take care of it. I went out for a walk with a friend for 1 hour (stopped at the store for lunch things at DH’s request while walking). When I got back I watched tv for a bit then headed to bed. I asked Dh ihow her bath was, he said he didn’t get to it. I was so angry I went to bed and quietly cried out of hurt and frustration.
A week of the same thing goes by, yesterday the baby refused to eat anything all day this led to a trip to the clinic to be sure all is fine. I am in there for over 2 hours. The baby screamed the whole time. I was litterally at my witts end. When DH got home from work I broke down in tears and begged him to help me. I explained that I feel like I am drowning and no one is there to help me. I even said that if he didn’t start helping me more then he would ge tthe opportunity to see what its like to do it all himself, because I was ready to take a knife to my wrist. GASP!!! yes I said it, I really didn’t mean it but I needed him to get it. I don’t know whay I said it but out it flew.  Then all of the sudden I couldn’t breathe and I was having extreme pain in my chest this went on for about 20 minutes, I was close to going to the hospital because I thought I was having a heart attack. 
I am normally very composed and “together”. But the facade is begining to crack.
I booked an apointment with my dr. but she can’t seem me for a couple of weeks. I know most of my problems are common but I was always able to deal with them, but now they seems so much worse and harder for me to cope with.

I just don’t know what to do to get back to the old me.

I had had my first major panic attack. I truly thought I was dying and that the world was closing in on me. I am very blessed to have had an amazing woman reach out to me to suggest that it could be PPD, and either way she would love for me to come to a meeting that she was running for moms struggling after having a baby. I went twice, sat in my car scared to face and admit what I had known all along. I was sick, severely broken. I never even got out of my car those first 2 times. I drove straight back home. The 3rd time I got to the door and was about to turn back for my car when the door pulled open, and a woman was standing there. She knew right away who I was an hugged me long and hard. I just stayed in her arms crying for what seemed like forever. It was instantly comfortable. I didn’t speak much at the first meeting but I heard storied from the other women, some were like me and others were very different. But we all had the same thing in common, something changed in us after our child was born. I attended those meeting for a very long time. So long that I felt funny going because my DD was over a year old. They helped me through Dr’s appointments, medication change after medication change and all the does increases that went along with them. They were my strength when I had none of my own.

Eventually I found the medication that made me feel closest to my old self and was doing much better for about 6 weeks. Then in June 2009 I was diagnosed with Thyroid Cancer, sending me back into a spiraling mess.

My life has never been the same. What has changed was the diagnosis, after 2 years with the PPD/PPA label, my diagnosis was changed to generalized depression and severe anxiety. Along with that came visits to a therapist and psychiatrist to help me to worth through old unresolved issues, and to learn my triggers and some coping mechanisms, and I’m on the edge of a new diagnosis. I still struggle, I still feel like much of my life is under a blanket of fog but thanks to one person reaching out to me way back then I was able to connect with other people suffering like I was and the world seems a little smaller, and I felt a little bit less alone in my struggles.

In light of the rash of suicides I want to urge you to be proactive with your friends and family and even people you may not know well. Many people suffer in silence, walking around with a big smile and lots of happy words when they are deeply hurting. If something seems wrong it probably is. Please take a moment and offer your help. YOU could be the one voice that saves a life in crisis.

Where I’m at

As you may have read in the last post I’ve been having some medical issues lately. To be specific I have bleeding for 2.5 months now. It began like every other period, only it didn’t end when it should have, it just kept going and going, getting heavier and more brutal to the point I was hemorrhaging. The blood was thin, almost like water, and I was soaking through tampons in 20 minutes. I have had a terrible backache that just won’t go away and had been hospitalized on Easter for a severely swollen left leg. Finally I went to my Dr. to describe all the issues, he sent me for tests. Luckily the bleeding had stopped by last Thursday, just in time for me to do the blood work. Monday I went for ultrasounds including a trans vaginal ultrasound. I was in the office, in pain, feeling uncomfortable and awkward but knowing it needed to be done. Monday after I got home I got the call that I needed to go in right away for the blood work results. I asked if it could wait until they received the ultrasound results. I didn’t want to go for 2 separate appointments. She told me she would check with the Dr and call me back. When she did she was adamant that I must come in right away. So in I went, not knowing what to expect. AS I sat there the Dr told me that she hadn’t yet received the ultrasound results but that the blood work revealed something very urgent. My Hemoglobin was dangerously low and likely even lower that they were on Thursday. I was told to take copies of the labs and head straight to the ER. ON the way out the office manger yelled for me to wait because my ultrasound had just come in and she would have the Dr review them and see me in a couple minutes. I was called back in 12 minutes later. She told me that several things were found. First they could see I had gall stones that were not yet bothersome but would likely require surgical removal at some point. Second, that I had some cysts and fibroids, ok, so far I am not worried. Then she dropped a massive bomb on me. My endometrial lining is grossly thickened. Which means one of two things. First possibility is Endometriosis. They find this a bit unlikely because it should have been noted when I was pregnant with Roo, but it was not, also I have none of the classic symptoms of Endometriosis, like the severe pain that goes along with it. The second , is uterine cancer. My symptoms coincide with this possibility so needless to say I am scared to death. I will have to have a biopsy to confirm, but all likelihood is that, at minimum I will require a full hysterectomy.

On the way out I was reminded to head straight to the ER.

 I did, and was pleased that things moved very quickly. They tested my hemoglobin and it had fortunately risen by 2 points. So they sent me home telling me that if the bleeding started again to come directly back. By the next morning it had started and was as bad as it was before. I set things in place to have someone watch my kids so I could head off to the ER. I slowly got worse and worse as the day went on. My hemoglobin had dropped by 4 point since 24 hours prior. They were very concerned and ordered a transfusion right away. I was given two units of blood and it took forever. It was cold and a bit painful. but my husband was with me holding my hand and my parents (long separated) were united in their concern for me. I saw the worry in my dad’s eyes and the helplessness in my moms as she brushed the hair of my forehead and tried her best to comfort me.

We’re all scared, but all I can do is wait until the biopsy is done. Then I’ll begin making plans depending on the diagnosis.

That’s where I’m at.