Past, Present, & Future: Searching for Peace

The above quote couldn't be more accurate. My daily life consists of all three happening simultaneously, although, it's more fear and anxiety than peace.  Cancer is so much more than a disease. Cancer not only affects your body physically with its attempt at ending it's life, but the psychological damage it leaves in its wake is just as damaging, if not, at times, worse.

Tomorrow will mark the five year anniversary of my initial diagnosis (June 25, 2009).  As I sit here today, I'm still in just as much fear as I was that day.  When will it get better, when will this fear go away???

I try to give myself positive pep talks each day when I wake up. Even when I'm nauseous and tired or my eyes feel as though sand has been thrown in them, or I'm up against a limitation after the transplant that I try to search for the good, so I can maintain a balance.  But sometimes the 'fear', outweighs it all and the scales I'm trying to balance collapses.

No one knows this, until now, not even my husband, but almost daily I'm subjected to tears, whether it's a limitation from my stem-cell transplant,  or an event that triggers a memory of what once was or could eventually be.  Many times my crying episodes are in solitude (in the car, the shower, or even in bed in the middle of the night). Usually it's my mind going a mile a minute and I mourn so many thoughts and feelings or losses due to cancer.

Some assume that when the cancer is gone, it's back to living normally. I truly believe this is so far from the truth.  I came to the realization in the middle of the night when I couldn't sleep that 'fear' has taken ahold of my life.  I'm afraid to 'live'. I'm afraid that once I allow myself that happiness and joy of living that it will be ripped from me again. I'm beginning to see the consequences of my relapse and the psychological damage it has left.

I've been to counseling,  I've been to support groups, I've spoken to other survivors, warriors, etc. but I still haven't learned a way to cope with all that has changed or has been lost.  I wish there was a magic wand to take all the pain and fear away. What may work for someone else may not work for another.  I want my 'peace' in the living world. All I can do is hold onto my 'hope' that through this journey I will find the 'peace' I'm looking for and finally be able to 'live'.




Image source: http://definingwonderland.files.wordpress.com/2013/07/past-quote.jpg

Brain Fog, Chemo Brain...What is it???

Well, I've noticed many times this new year that my issues with 'chemo brain' have gotten worse.  But I've also noticed that the severity of it varies daily.

For example, I had been removing laundry from the washer and placing it in a basket so that I could place it in the dryer.  Please note that my washer & dryer are not side by side due to our house being very old (built in the 1890's) and the outlets are not near each other.  So due to the location of the washer and dryer, I needed to place the wet laundry in the basket so that I could easily transfer it to the dryer, which leads me to my chemo brain moment. After I placed the laundry in the basket, I added a dirty load to the washer and added the soap and fabric softner, chose the cycle of wash and water temp and started the new load of dirty wash.  Then I went upstairs to start a new chore in the house. After sometime, I heard a few beeps notifying me that my laundry was done.  So upon arrival, I went to the dryer and noticed there was no laundry in there. I had completely forgotten to add the wet laundry to the dryer.  I stood there wondering how could I forget something like that and how could I forget that I forgot about it.  I had gone to the dryer to fold and hang the clothes and I just stood there absolutely in a fog. This has been happening a lot lately. 

I am finding myself just standing or sitting somewhere mentally searching for some form of recollection of a specific incidence or attempting to recall a piece of conversation or even the amount of an item that I wrote a check out for and I can't remember!!!

Someone could tell me something and even after 5 minutes, I can't fully recall the details of the conversation, it's like I lost a moment or two in time that I can't remember.

Is this normal??? Are thsee bouts of chemo brain worse some days than others???
 

Thankfully, I visit my oncologist tomorrow and I will be able to discuss these concerns with him.  I just wanted to put it out there for others to read (and before I probably forgot) hoping to have some feedback from anyone else with similar issues after  chemotherapy.

The list could go on and as to the things that I forget and I'll save that for my doctor.  But if this is common, then I'll just have to figure out how to adjust to this 'new normal' of intermittent lapses in memory and hoping that this brain fog, forgetfulness,  lapses in memory will be 'forgotten' and a thing of the past.

Image source: http://maryhardy.com/?p=1891

National Cancer Surviors Day 2014

Image Sources:

http://anasebrahem.wordpress.com/2013/06/09/how-do-you-see-the-morning-today/

http://www.hmh.net/HMHWebsite/NewsDetail.aspx?NewsID=199

http://marcusaureliusquotes.blogspot.com/2013/08/when-you-arise-in-morning-marcus_12.html?m=1

#FeelAlive

Lately I have been beginning to look at the brighter sides of where I am today. Many of my posts speak of the trials that I have encountered since my diagnosis and stem-cell transplant.  And while I still want to keep it real, I also want to express my joy with Life. 

Recently, and quite fortunately, I was able to receive a free real-hair wig.  It has uplifted my self-confidence and has made me feel more normal.  I know the saying 'bald is beautiful', but it's not as easy for some to embrace. Especially someone like me who has always struggled with weight and a poor body self-image. 

Somedays, I feel like shouting how happy I'm here to be alive. I want to laugh daily. I want to be my geeky, book nerdy, techie self. And if anyone has issue with my quirky ways, then so be it. I love who I am. I love all those odd ball things about me because that is 'me'.

I'm embracing the newer things about me.  When faced with your own mortality, your outlook and perspective definitely changes.  And those changes affect how you approach Life.

Well, I'm approaching Life by the  #feelalive motto!!!   I hope many of you will do the same.  Don't be ashamed of who you are...Live, Laugh, Love, Feel Alive and Embrace Life!!!

Why, Why, Why?!?!

Ok, don't ask me why and don't even offer a lecture about the stupid thing I did tonight.  First, let me say that I have made it known for some time about losing my sense of smell which had also affected my taste, or lack of. I have been relating it to the numerous head colds I had over the winter. Now however, I'm not so sure.

Let me also say that since my stem-cell transplant, I would experience an occasional 'cigarette burning' smell in my nose. It didn't happen often and I just thought I had been around or walked by someone that had been smoking.  But recently, I have been experiencing this so-called 'cigarette' phantom smell for a few weeks and there has been no way, in that time, I have been exposed to cigarettes.

So, now you ask what stupid thing I did!?!? Well, I can say I 'Google'd' it. Ugh!!!!! Why would I do such a thing? It always seems to be said that you should never Google a health ailment or oddity because it could scare the holy shit out of you.  Well, guess what??? The shit has been scared out of me.  Basically, there are two occurrences of this phantom 'cigarette' smell.  One is parosmia: smelling something foul when nothing is around to actually be causing the odor and could be related to common hyposmia which is the common absence of smells.

The other causing factor is the one that has sent my anxiety into orbit. It stated that if someone begins to experience a more steady existence of this phantom 'cigarette' smell it could be cause for a much more serious concern in relation to a tumor of the brain or the olfactory nerves.

So, needless to say I'm freaking out.  Thankfully, I have already seen an ENT Specialist in Pittsburgh and already have an appointment for a CT Scan the first week in June.  I'm really hoping and praying that it isn't anything severe.   I know that you shouldn't stress about the unknown.  But when those gut instincts of 'knowing' something isn't right has proven to be true, which was to be my initial leukemia diagnosis and my relapse,  I tend to believe this could be a pattern and the diagnosis not so promising.

So now I'm going to be a wreck and asking those closest to me, to yet again, have some patience.  And I'm just plain ol' scared.

Pandora's Box

"We open this huge Pandora's box (of late effects of transplant)...."the leukemia may be gone, the patient has survived, but how do we get them back to normalcy? That is the challenge." 

- Madan Jagasia, director of Outpatient Transplant Program and chief for Hematology and Stem Berm Transplant at Vanderbilt Ingram

"Opening Pandora's Box"

http://www.vanderbilt.edu/magazines/momentum/2012/06/opening-pandoras-box/

After a rough start to the new year (2014) I have noticed an increase in complications with my health. I'm trying to learn and understand are these just normal occurrences, are they related to cancer, the chemotherapy treatments and stem-cell transplant or is it all a combination?

This article speaks to many truths post transplant. I referenced the above quote from the article because it really gets to the heart of the matter. But there is one thing about that quote that I begin to question - "how do we get them back to normalcy"?

I'm not sure anything can get us back to normalcy. The transplant community uses the term your 'new normal' for life after transplant. Dry eyes, blurred/double vision, lung issues, GI tract issues, tingling sensations in limbs, dry skin, mouth and nose, lack of energy and possible neurological damage to list a few is to be my 'new normal'? And I'm just going to have to accept this? I wish it were that easy.

It's all a complete mind f#ck. Each experience is personal to the person that has fought this battle. No two experiences are alike. Sure, we may have similar experiences and share common side effects but over all you still feel so alone in a community with a shared experience.

Where do we go from here? How can we learn to accept these complications whether they occur daily, or frequently or just occasionally?

It feels as though it has been one health issue after another. Feeling misunderstood, that I need to be thankful that my cancer is gone and look forward to the positive light. I really wish it were that easy, especially when everyday there is something that makes you feel like shit, or you can't catch a breath or even be able visually focus on something.

I know this is sounding like a 'poor me' thing but so what if it is.  Why can't I say or think it? Is it really that wrong to say or think? Maybe if I allow myself that 'poor me' thinking, I can allow myself to recognize my weaknesses and begin to feed and build them into strengths.

I'm hoping for more answers next week. And I'm just trying to find my way with this 'new normal'. It isn't easy but I know, at some point, I will get there. Because if anything I have learned about myself, I don't give up and it will be a fight to the end.

Image source: http://i.livescience.com/images/i/000/049/809/original/pandoras-box.jpg

Out Sick Again

It has been awhile since my last blog. I haven't had the energy or even the thoughts to put into the blog. I have been battling with congestion and a persistent cough for a little over a month. The congestion is so bad that I have no sense of taste and no sense of smell which has interfered with my appetite. My cough becomes so persistent that at times I lose my breath and become lightheaded, with many bouts of vertigo.  Sometimes I'm coughing so hard my eyes water and my ribs ache.  And most recently,to add on top of all this, I'm 100% pure exhausted. I become so tired I have a hard time keeping my eyes open and many times I'm out of breath.  I can't even climb the stairs without trying to catch my breath.

I'm on my second round of antibiotics. This round of antibiotics is completely different from the dosage I had a couple of weeks ago. I'm ready for warmer weather with the hopes of less sickness.  So far, 2014 has been a difficult year on my health.  I'm becoming very down and very frustrated.  And I'm just sick of being 'sick'.

Is this going to be my 'new normal'? Since my stem-cell transplant, my winters have been full of cold and flu. However, this year seems to have hit the hardest. I don't remember being this sick all of the time. I'm truly hoping and praying this is the worst of it and better are days ahead.

Image source:
https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlYC86Vtk-GsVlFzCeSq-UtEFbDbwYjsnmGeUu5AIALkR_cBAbt8DQt1tJTEfGKNLamg7RdciLiWXGFVoZ6cf1v43JuOAd7VsLAiHuf9ixFZNxHBZI-qB_BD8U7zAi73KafjSzlv546_o/s1600/out-sick.jpg