Posted in health

REST

LauderdalebytheSea-1-64

Grateful for times of rest. I depend on them more than people know. Having an “invisible” chronic illness isn’t easy, especially when I still want to go at life full speed.

I am ever convinced that no matter how much I explain how I feel/what I am going through, there will be those who see what they wish and I’ve wasted my breath. That’s ok. Their obliviousness doesn’t erase my truth, even though if that worked in this case, I’d embrace it.

Believe it or not, I do not like how I feel right now. I do not like being achy and tired all the time. I have three weeks of great feeling, then the bottom falls out. The five pounds I just lost comes back over night. The blanket of fatigue comes back and rests on me.

I don’t have it figured out and my doctors don’t seem to want to stretch themselves to help me to.  I will deal with that and move on regardless.

Sometimes all you have is your own wits and will. I will use both.

Posted in breast cancer, health, S. A. D., tamoxifen

S. A. D. AND TAMOXIFEN WITHDRAWAL

I am not a big fan of the fall time change.  To be honest, I’m not a fan of time change for daylight “savings” at all.

I grew up in Indiana, where until recently, Daylight Savings Time did not exist. Until I moved to Houston, I had no idea how to change the time on any appliance or vehicle that I owned. The only reason I knew that time had “changed” everywhere else is because network television shows came on later or earlier.

Though I’ve been off Tamoxifen now for 2.5 months and the improvements have been slow but steady, I must now prepare myself for the inevitable effects of S. A. D. – Seasonal Affective Disorder.  I know it’s a good thing, a very, very good thing, that I will not be on Tamoxifen while I deal with SAD (dealing with both made winters hell), but I am not looking forward to what the time change brings for me.

A good friend reminded me that SAD was coming and I needed to adjust my expectations of how I’d feel free from Tamoxifen to accommodate what SAD does to me.  She’s known me for twenty years and was even my roommate for a time so she has experienced SAD me firsthand.  Come Spring, she reminded me, I will really notice the difference between Tamoxifen Me and Free-From-Tamoxifen Me and I needed to be patient with myself (which she knows is a huge challenge for me).

Many people in my life have been waiting for Free-From-Tamoxifen Me.  I feel a bit of pressure to perform differently to adjust to their expectations – that I will snap back to the person they remember before I had cancer.  I’ll be honest, I don’t want to be the person I was before I had cancer.  The Cancer Crucible was awful and merciless, but it changed me forever. Now that I’ve accepted that change, I can’t go back to Pre-Cancer Me. I wouldn’t even know how if I wanted to do so.

One difference during this SAD season is that I will not be on Tamoxifen, which I hope will reduce the fatigue and depression that usually hits me this time of year.  I have my artificial sunlight lamp at work and I am moving during the day at my standing desk and I am going on vacation, which will provide a tremendous boost.

Acknowledging my limitations is more difficult than people who don’t have physical or emotional limitations could possibly understand. I am comfortable in my own skin, in my own brain, in my own emotional state. I confront my limitations head-on and try to stay ahead of the oncoming storm. Most of the time, I’m victorious. Sometimes, I am not.

Most people love me anyway and appreciate the effort I still have to exert to go to social gatherings, but there are some who still roll their eyes when I decline an invite.  These same people have made snarky comments to me when I do show up at events or gatherings.  I chalk that up to their immaturity and lack of empathy, but it’s very difficult for me to let those comments slide when I’ve made significant effort that they cannot possibly understand just to show up.  Those comments and judgements make me less inclined to put in the effort if I know those people will be in attendance.  I don’t need the drama, especially if I’m already fatigued.

I have more energy now, that’s a fact, but that doesn’t mean I will jump back into the deep end of the social event pool, especially when some types of events or people at those events suck the energy right back out of me.  I’m still going to be choosy about what I choose to do and whom I choose to do those things with.  It is what it is.  Even if all the planets align and it’s the perfect event for me to attend, sometimes, I still can’t and I have to let myself stay in timeout regardless of whether anyone understands that or not.

That said, I want to hang out with my friends, but I need to dial back the expectations for myself – expectations of others be damned. I’m easing back into the fast lane at my own pace, with my own goals, with my own agenda.  The only person I have to please is me. It’s amazing how true that statement really is.

Next week, I will be on vacation with my best friend. I have been looking forward to this for countless months.  I am thrilled that I will be able to pour more of myself into this time together than I have been able to over the past few years, but I will admit, there are going to be times when I am not going to be able to keep up and I know she will understand that.  She’s worth any effort I have to reach deeply for and I know we will have a great time together. Her understanding is worth its weight in gold.

I think the reason I have adjusted to this aspect of my life is because I have adjusted the expectations I have for myself. There is no huge gap between what I want to do and what I can do. I am happier than I’ve ever been because I’ve made that adjustment – and others would be happier if they’d adjust their expectations of me as well.  Their happiness, however, is not my responsibility.  I can’t change others, I can only change me.

Posted in Uncategorized

FEELING WHAT I FEEL

I have been sorting myself out for 45 years. I have found that I have two sides to me that are in constant conflict with each other. Given that my two favorite colors are blue and orange, it shouldn’t be a surprise I view those two sides as fire and water.

I am by no means volatile, but I have my moments as a seething cauldron of anger. I hold that anger in so I don’t allow the lava to burst forth, and usually this anger seeps out in hot, angry tears.  I let out the rest later, in private.

I hate those episodes, especially if the person who threw gas in the cauldron is male. Most men view those tears as a manipulative tool, when in fact, the tears represent all the words I wish I could say but know if I do, more trouble would arise. In fact, I see my tears as sparing the person across from me from a barrage of words, likely a barrage of hurtful, anger-fueled words.  Having been on the receiving end of such barrages, I hold it in, and the tears come out instead.  You’re welcome.

This week, during one of those moments, I was able to reel it all in, sit down and figure out what the real issue was. The two words I took out of the flames were humiliation and respect. I do realize this is about me and my reactions and how another person can make me feel. I take full responsibility for my reaction and my feelings.

My friend David Hayward (www.nakedpastor.com) brought the Feeling Wheel below to my attention.  I have been “unpacking” feelings for years, knowing that behind anger, there is always a secondary emotion (go therapy!). I found this chart helpful. I hope you will, too.

One thing I have taken from this week is I’m not ashamed of my feelings. They are real (though not always right). It’s what I do with them that counts. I am still working that out, but the valve I have in place, though it needs improvement, is working okay for now.

A friend asked me if triggers ever go away. Sad to say, I don’t believe so, but the trigger is no longer attached to a missile launcher, just a BB gun. I’m hoping one day maybe that trigger will be on a rubberband flipper (like I used to make with my brothers).  I have no notions or hopes that most of my triggers will ever disappear, but it is up to me whether that fact is problematic or not.

As always, I am at peace with myself, and that’s what matters to me.

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Posted in Uncategorized

OUT OF CONTROL

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I have many things in my life that are “out of control.” Ten years ago, that fact would have terrified me and let me straight into a depressive spin. Now, I find that fact so liberating I almost want to bake a vegan cake to celebrate.

WEIGHT LOSS: I am down 54 pounds as of this morning.  I have absolutely no control over my weight’s descent right now. I can speed it up a bit with cardio, but in reality, right now, the weight comes off of its own free will, or the weight plateaus of its own free will. I can only do my part – exercise and eat right – and leave the rest up to the tool the surgery gave me.

I am still adjusting to the byproducts of weight loss. Buying new clothes (it’s so expensive!) and continually changing the way I eat. Now that I’m gluten and dairy intolerant, I have to cook a lot more than I used to, but I’m loving it. 

The best byproduct of the weight loss is, however, the confidence. I thought I was confident before, now I feel unstoppable. That notion is actually very humbling.  I am blessed beyond measure right now. 

OTHER HEALTH ISSUES: I am experiencing some very real, very troubling pain in my joints, especially my knees, hips and back. The current diagnosis is that the pain is due to a hormonal imbalance that, unfortunately, cannot be balanced right now. I am on an estrogen blocker (Tamoxifen) and I’ve lost a lot of fat cells (that store estrogen) so it’s all out of balance. I can’t take estrogen (my cancer was estrogen positive), so I’m stuck. My doctor said as long as movement alleviated the pain, it was hormonal and not rheumatoid arthritis and not to worry.  Just move. Easier said than done some days.

PHOTOGRAPHY: My plans to launch my own photography site, do shoots, and sell prints came to a screeching halt by cancer interruptus. The last two years I’ve had to pour so much time into getting healthy again that this project had to take a back burner and there wasn’t much I could do about it. I had to let go of my plans, but now I’m working on my site again and am hopeful about 2014.

I have many other out of control things I’m juggling right now – work, hobbies, life. I just need to remember I really don’t have control over any of it and I’ll be fine.

I remember when I was paralyzed by the illusion of control. One thing would go “out of control,” and the anxiety level would climb so high I’d be ill from it. Then one day, I realized control is an illusion. Nobody really is in control of random happenings, the only thing I control is how I react to all the random.

Yes, I still get stressed, but I am happy with where I am right now, even though so many things are up in the air. I can relax because even though nothing is under control, I’m still ok.  

Let go of the illusion of control. Relax. Nothing is under control… and that’s an amazing feeling.

 

Posted in Uncategorized

HOLDING, 10 YARD PENALTY FROM THE SPOT OF THE FOUL

I’ve been lingering right under 50 pounds in my pursuit of losing 100 pounds. I have been at the gym quite a bit lately, and I know that’s holding the scale hostage somewhat. I am going broke buying clothes and have purchased my last until January unless I go through such a weight loss spurt my pants won’t stay up.

I’m trying to save money, which isn’t easy where I’m at right now. Redoing my wardrobe every six-nine weeks isn’t helping, nor was that $1000 worth of deductibles from the robberies. I’m going to Hawaii in March, regardless.  I will figure it out.

My trainer said I was pushing myself too hard. I never, ever, thought I’d hear a trainer tell me that, but she did. I tried to tell her that if I give in to the fatigue or side effects of the Tamoxifen, I will never reach my goal. This is my life now. Push, push, push. Rest on the weekends. Push, push, push.

It would help if she wouldn’t start me out with 50 pounds on certain apparatuses, but she does. I give it a shot, but usually have to cry uncle. Loudly. Then she looks at me and says, “I keep forgetting you are over forty.”

Between my trainer and the aqua fit class, I am usually exhausted by the time Friday night rolls around. Not a weekend party girl, anymore. I’m not boring, I just need the rest.

Yes, I do have more energy than I used to. Much more. I feel so good most days.  Still not sleeping well. I don’t think I ever will. So I will sleep somewhat adequately and keep pushing.

Those who know me wouldn’t expect anything less.

Posted in Uncategorized

CLOSING IN ON ONEDERLAND

When I was a kid, Memorial Day marked opening weekend at the lake cottage my grandparents owned. I grew up in the water, learning to swim early on and becoming an expert in water and boat safety whether I’d planned to or not.  I was a strong swimmer and yes, my element is water.

I live where the UV warnings are out daily, so I do not frequent the pool or the beach. My skin, fueled by genetics and medicinal side effects, burns rather quickly no matter how hard I try to protect it.

When It came time to look for a gym, however, the main selling point for me was a pool. Had LA Fitness not had a pool, I would not have joined.

Fast forward a few months and I am an Aqua Fit junkie. I go every Saturday morning and I’m trying to work in Tuesday and Thursdays after work. My LA Fitness does not have those classes, so I am having to hunt around other LA Fitness locations to find a class nearby.

Aqua Fit is a highly underrated workout. 50 minutes of aerobics, weights, and core toning, with music and a motivating instructor, all the while being in the water, not getting overheated – who can beat that?  I certainly can’t. 

With Aqua Fit, the scale is moving again.  I am at 206.5 pounds now. I can’t remember the last time I weighed this, but I am certain it wasn’t in this century.  As I close in on “Onederland” I am ecstatic, but the NSV’s (Non-Scale Victories) are even more exciting.

Months ago, I made a list of things I look forward to as a thinner person – NSV’s.  I am 70 pounds from goal and I have already achieved some of them – shopping on the first floor of Macy’s, crossing my legs effortlessly, enjoying getting photographed, and having one chin. Others are right around the corner, and I’ve even achieved NSV’s that I hadn’t even thought of at the time, like putting on a shaper and having no back fat spill over. 

My surgeon was a bit disappointed that I’ve only lost 31 pounds so far until he remembered that I am taking Tamoxifen, which makes me gain weight, and now is very happy I’ve lost 31 pounds while taking Tamoxifen.  As long as the scale keeps moving, I will be satisfied as well.

The weight loss is exciting, but my ultimate goal outside of health benefits remains the same – appearing on the outside what I feel on the inside. I am still amazed that I’m even on this journey, but I am ever so grateful. 

 

Posted in Uncategorized

POST-OP MUSINGS

Well, Monday has come and gone. I had my surgery! I have entered the two week period of “What did I just do to myself!” and the endless sipping of liquids.

The surgery went well. After surgery I had an extremely difficult time for a few hours with the nausea and being paler than usual. It took whoever brings up the meds an hour and a half to get me the anti-nausea meds. I was not happy about the response time at this hospital. They did turn the temperature up in the room, which helped, and I finally settled into sleep.

Dear Laura, who has been with me now through two surgeries, delivered me to the hospital in the morning darkness and was sitting by my bed for hours. Finally, she went home and I settled into getting woken up every two hours to walk, take meds, vitals, etc.  I did walk for the first time later that evening, and again at 3 AM and more frequently thereafter. 

I couldn’t have water until I passed the dye test on Tuesday morning, which was a bit of a surprise to me. Not even ice chips. The nurse brought me swabs to keep my mouth moist. After doing the breathing treatments, my throat already sore from the surgery, I was ready for those swabs!  

The nurses began saying I would go home Tuesday if I passed the dye test – my doctor was infamous for sending patients home as soon as possible to recoup. I had all my tests extremely early that morning and then around 1 PM the doctor came in and told me I could go home.

The discharge nurse then told me I had to fill the pee pan to a certain level before SHE would let me go home. Keep in mind my stomach now only holds four ounces of anything and I had been denied liquids until about 11 that morning. 

I had gathered a bit of water, Gatorade, sugar-free lemonade around me and started sipping. And sipping. And sipping as much as my tiny pouch would hold. Output was slow. I’ll be honest, it was 4:30 before I made the offering satisfactory to my nurse! 

Finally, I was able to come home and climb into my recliner and start sipping more liquids. I took my pain medicine as soon as Laura brought it to me. I must have drank it too fast, because I had my first experience with dumping syndrome (cramps, nausea, and a fever spike). I’m glad I got that out of the way – I do NOT want to go through that ever again and now that I know what it feels like, I will walk the straight and narrow!  (which is not easy to do alone and out of it).

My college roommate, Becky, helped take care of her sister, Sarah, when she had the surgery a few years ago. Becky was her drill sergeant and made sure she did all her breathing exercises, drank her fluids, etc. They both made the offer to help me out and every day they have been chatting with me, and the accountability is wonderful. If you’ve ever seen the Beckster Stare of Disapproval you don’t ever want to see it again! I’m so grateful for them and their help! 

Now I need to sip. I can hear Becky saying that from far away. Just keep sipping. Just keep sipping. Just keep sipping…