My cancer saga started when I was diagnosed at 38 with Invasive Ductal Carcinoma. I have a twisted sense of humor and have tried to continue that laughter and optimism on my journey...

Tuesday, October 14, 2014

3 S's - Swim, Sleeve, Shoes

Episode XCIII - swim until you can't see land


Between the joint/bone pain, the lymphedema swelling, and the nervous system issues I felt like I was unable to do anything. Everything hurt. Everything was hard. I had to do something... some type of exercise.

After discussing it with my OT, she recommended swimming. With an exercise option in place and my family getting me a Y membership for my birthday I was off to the pool. For some reason I had totally forgotten about water exercise. I think I mentally blocked the idea of swimming because it would require me to get into a swimsuit in front of other people. However at this point do I even care??? NO!


Watch me attempt to swim!


I must have forgotten all my early years on the swim team and how much I enjoyed swimming. I love the water. How could I have forgotten that?!?! While I knew I wasn't going to be doing butterfly or backstroke yet, I was able to at least get in the water and do some form of exercise. I had to modify my swimming to make sure that I do not raise my arm above the water. So my freestyle was odd looking, but I could still do breast stroke with ease. Even in the dreaded swimsuit and knowing that I probably looked ridiculous... who cares... I loved the water.

There was one moment when I finish a lap and turn around. 
I am completely submersed and nothing hurts. 
Seriously... nothing hurts. It was an amazing moment.

It was also time for me to get a more durable, stronger lymphedema sleeve and gauntlet. After being annoyed at my medical supply store fitting session where I felt they implied that I supposedly have a disproportionate arm... even for a lymphedema patient... which I find ironically impossible, my OT had ordered some for me. Apparently, I can fit into a Solaris ExoStrong sleeve... so I will promote them for other disproportionate lymphedema people out there...


Check them out... click here.


The sleeve is made of a thicker material that provides more compression. I tend to wear my Lymphediva products on my normal day, as they are softer and less compression. However I do need an option to have more compression and these products are great for when I am do more strenuous activities. Which basically means I rarely have to wear it these days!!!

All joking aside, it is nice to have both options. There are days when I need it. However, the compression garments are expensive... very expensive. We are talking over a hundred dollars for the set... and you have to have multiple pairs. You wear them all day. They can be washed, but it is like underwear... would you only like 1 or 2 pairs of underwear to wear all year?!?!

Speaking of spending money... thank goodness I have a mom who is willing to spoil me. When she visited me recently, she apparently felt that I was not wearing good shoes. Ok... even if most of my shoes have been in my closet for years they were still... sort of... maybe... usable. After she donated like fifteen pairs of shoes (some never warn... aka heels) she took me off on a shoe shopping spree. And not only did I get shoes... I got Eccos...


It's like I am walking on air...


She gave me the big-spending-make-my-child-feel-better shopping trip. Thanks mom!!! Normally, I cannot stand to shop. Really... boring. However, I will say that I was not complaining on this shopping trip. I am now set for summer, fall, and winter. Loving my shoe options now!!!


In my head...


I just keep moving forward and trying new things to feel better. I am really willing to try various products and options. Like a variety of different compression garments, shoes, and other things to try and improve my general well-being.

I wish I had thought of swimming sooner. And I recommend it to so many people I meet now. It is the one time I truly feel good. The water is so calming and without the impact that normal exercise puts on my body I can actually do something. It is a small something, but it is something!


“The simple everyday experiences 
become the doorway to new thoughts and inspirations.” 
- E.A. Bucchianeri


Episode Reference: Swim Until You Can't See Land, Frightened Rabbits song

Tuesday, October 7, 2014

The Big 40

Episode XCII - Oh, I'm getting older too


Another Birthday... but this one officially says that I am over the hill...

Most people get all weird about turning 40. Like the good part of life has already happened and now it is time to grow up. Maybe feeling like they are losing their youthfulness. I have never really thought about aging like that. I have embraced each age... maybe even grateful that I am moving out of the decade I was in.

To be honest, I would not want to go back. Each age and stage has been good, but each has also given a fair share of challenges. I had no idea who I was in my teens. I was trying to figure out who I was in my 20s. I was finally figuring it out in my 30s until they ended up malignant (bad cancer joke).

Now I look forward to seeing what is over the hill. I am sure my 40s will surprise me. However, I am just grateful to be here. Not only happy to be alive, but enjoying my actually birthday on vacation with my family. It's October and we are at the beach.


Fall Break = Florida


It is fall break and a good time to get away. I am responsible and followed all my lymphedema precautions. I would attempt to avoid any additional swelling. However, I am going to enjoy life... even if it means I get a swollen, painful arm!!!

However, it is the perfect time to be in Florida. The weather is not too hot. It is not crowded. We did so many fun things. But I cannot lie, like with everything in life the trip had its high points and low points. Things do not always go as planned... stuff happens. I have young kids... they are going to misbehave at times. But overall, it was a good trip!!!


 
 

In my head...


There is nothing like a good beach vacation to forget about it all. The beautiful ocean view. The sand in your toes. The... I already have forgotten what I was talking about!

It is hard to believe that now would be the time I would begin to think about scheduling a mammogram. Honestly, if I had not found my tumor back in April 2013, at the rate my tumor was growing, I highly doubt that I would be here. Wow!

Like I said... I am grateful to be here!!!




Episode Reference: Landslide, Fleetwood Mac song
either/or
Dixie Chick song

Wednesday, September 17, 2014

Surprise...

Episode XCI - move along just to make it through


Well crap... I am off to do a biopsy!




Here's the biopsy back story...

Almost two weeks ago when I was going to bed and took off my bra... there was a funky swollen spot. An oddly oval raised spot on the lower inside part of my breast. Even though it is on the same breast, it was not located anywhere near my original cancer location. Great?!?!

Seriously, this weirdness would happen on the same day of my Oncology follow-up appointment. I bet if my doctor had asked to look at my breast it would have been there and we could have dealt with it then. Instead, it was late at night on a Thursday... there was nothing I could do... except make my husband take pictures of it.


Odd swelling... inside the black circle...


I know... you were expecting full on nudes... sorry to disappoint. However, now I take pictures of all weird changes. I want to document that I was not crazy and that the changes I found were real. By the next day, Friday... it was still there. And it was still there through the weekend, but it was larger and looked worse.


My normal vs my swollen skin...


On Monday I went to my OT appointment and talked about it with her. I definitely had peau d'orange which is basically a sign of swollen or inflamed skin. It is where the skin looks like an orange due to swelling. Of course, we both knew that it was definitely a new issue. So to be safe I needed to call some one. Argh!

Now that I knew I needed to call someone, I had no idea which of my many doctor's I should call. I realized my Oncologist would probably do nothing (as proven on Thursday). The Family Doctor would refer me back to the Oncologist. The Radiation Oncologist would probably refer me to the Breast Surgeon. So, I called the Breast Surgeon directly.

Of course they wanted to see me... so I scheduled an appointment. The next day I was glad that I was being seen as the area was now even larger and my skin was reddening. I went from having nothing to having weirdness in the span of just a few days.


Getting red and spreading...


When the Breast Surgeon looked at it, he agreed that it was swollen and red and new. They immediately (and I mean immediately) took me to imaging office next door and ran an ultrasound. I followed the typical protocol: undress, lay down, get ultrasounded. While there was mild inflammation, there was no mass. Looks good!

So, the first thing I had to do was take antibiotics. It could be inflammation from an infection. Of course, I was worried that it was that Inflammation Breast Cancer (which if you do not know about it - please check it out... it is rare, and completely different the other types of breast cancer). But, the first round of treatment would be to see if it was an infection.

So, I took my very strong dose of antibiotics for the rest of the week and weekend. I got the lovely side effect of needing to be close to the toilet! Strong antibiotics = upset stomach. By Monday there was nothing left in my stomach and the swelling in my breast was less severe, but it was still there. So, I called the Breast Surgeon back and scheduled a punch biopsy.


With the back story concluded, I am back to my punch biopsy...

The actually biopsy was quick. It took around thirty minutes. And only mildly discomforting afterwards. Really, I would easily do it again... and compared to other things I have gone through - this was CAKE.

The procedure was simple. I got undressed. The doctor and I talked about where the worst of the swelling was, as that was where the sample should come from. He drew a circle around the area. Then the area of the breast was cleaned and numbed (via a shot). The doctor took a small device and literally punched a sample out of my breast. He then used a scalp to get the rest of the sample. After that a tape suture was applied and I was bandaged up.


A punch biopsy... very simply illustrated


Because I take blood thinning medications they put on extra bandages and I was advised to leave them on a few days longer than they normally recommend. Not that I was going to bleed out from the tiny (and I mean I was disappointed at how little was taken) tiny sample.


My post biopsy side table...


With the sample taken I walked right out the door and knew that I would have some discomfort in a few hours... which I did. However, it was pretty easy and pretty painless. I now can add a different type of biopsy to my resume. I am definitely collecting procedures and biopsies over the past few years. Hoping I can stop gaining experiences soon!!!


I survived!


Biopsy over, now to the results...

My philosophy: No news is good news. While my mother was freaking out and wanting the results, I figured they would only rush telling me if it was bad. So, do not call me quickly.

The results came late the next day and it did not have signs of cancer. There was inflammation (well duh), but no detected carcinoma. Good news!

So I have a funky swollen spot on my boob. They are saying either I had an infection (which means it should go away) or some messed up problem from radiation or lymphatic swelling spots in the lymphatic channels from my lymphedema.

Basically, they do not know. Since they do not think it is cancer they are not worried about it. They reminded me I have a mammogram in a few months, so it will be re-evaluated then.


In my head...


I am very glad that the results said not cancerous, but it is annoying that I have some weird unexplained thing on my breast. At least when I followed up with the Radiation Oncologist he reminded me that they did excessive aggressive radiation on that breast, so it would be very hard for any cancer to come back... at least for a few years. Wow... a few years... reassuring!

So, I guess I will just deal with my funky swollen spot. With all the options of what caused it to happen, lymphedema seems to be the best reason. It is swollen (lymphedema). It looks like it is in a channel (lymphatic channel). It has now spread into into my nipple and looks like a 9 or 6 depending on the angle (networked lymphatic channels). With all the doctors not worried, I guess I should not be either.

Ironically, I am dealing with more issues from my bad cancer-getting breast... only proving that it has exceedingly earned the right of its nickname - my "sh*tty titty"!!!


“Do not anticipate trouble, or worry about what may never happen. 
Keep in the sunlight.” 
- Benjamin Franklin


Episode Reference: Move Along, All American Rejects song

Thursday, September 4, 2014

Follow up on this... I know I feel bad!?!

Episode XC - don't wanna be your monkey wrench


It's back to the doctor for another follow-up. I was not exactly looking forward to going back to the Oncologist. Not because he is a bad person. Not because I was worried about what he would say. It was because nothing would be done.


Waiting to be ignored...


The fact was I have had horrible symptoms and side effects post-treatment. I have complained (while still being my up-beat self) about these things. I have basically been ignored. None of these irritating side effects were part of my pre-cancer living so natural deduction implied they are probably related to the treatment I took or the medicines I am currently taking. All from cancer... so shouldn't the Oncologist manage those issues?

My experience tells me no. The Oncologist seems to only want to deal with active cancer and providing treatment for that. Anything else was not their concern. So, I was dreading the fact that I had to go in and basically be ignored.

As with any appointment, I had to get blood work before I was even seen and it was not my only round with needles. Earlier this week I completed the family doctor's blood work. It seems that all my medicines are blood thinners... meaning I get war wounds quickly. The inside of my elbow showed that maybe... just maybe... I need to take a break from all this blood sampling business.


The larger bruise is almost a week old.
Why not make a matching set?!?!


And just like I expected... the appointment was pointless. Normally that would be a good thing. My blood work looked good. I get another few months before I have to meet with him. So, by all accounts I should be thrilled that the appointment was pointless.

However, I was really hoping to be heard. I was hoping that he would listen about my symptoms and actually cared.

Instead I got a you are looking good, you are feeling good response. I got that response despite the fact I was protesting (and I was actually quite rude) that I did not feel good. Do not tell me I feel good, when I am almost in tears telling you I feel bad. No wonder I was getting rude!




When I fussed about my weight he blew it off commenting about how he wished he could lose weight too. That issue was basically every one's problem. I suppose I should be thrilled that treatment gave me 50-60 pounds. I should be so glad that I am in menopause, take 2 medicines that cause weight gain, and my thyroid has stopped working properly. I guess I should just be grateful I am not gaining weight. Why would any woman worry about such a silly complaint as gaining weight and feeling self-conscious about it?!?!?!

When I complained about my constant pain and nervous system problems, he almost slightly believed those could be real. I was told that I might have those side effects, but it was not common. Hence they must not really exist and I should keep going to my family doctor to treat those non-existent side effects. I know I am not the most urgent patient (no doubt), but I do matter and the fact that I have been barely able to function should count. I guess I should be grateful that I have to go to another doctor to treat things caused by his treatment. Why would I dare imagine such ridiculous side effects could happen even though so many breast cancer survivors are saying the same thing?!?!?!




All my sarcasm aside, after waiting almost an hour to be seen, I was given maybe five minutes to be told I felt good. I was basically ignored.


In my head...


This pretty much sums up what I am thinking...




As I expected... nothing happened. The lack of understanding makes me question if the doctor is the right doctor for me. He is well qualified and very nice, but he does not make me feel like he cares. In the case of dealing with cancer and the potential return of cancer... it makes me wonder about finding a new doctor.

Even though I am totally irritated that I was basically ignored, at least I have a different doctor who is trying to find an answer... and even better than that, I do not have any new signs of cancer.


"The trouble with anger is, it gets hold of you. 
And then you aren't the master of yourself anymore. 
Anger is.
And when anger is the boss, you get unintended consequences."
- Doon's father in City Of Ember, Jeanne Duprau


Episode Reference: Monkey Wrench, Foo Fighters song

Sunday, August 31, 2014

Weekend Get-a-way

Episode LXXXIX - It's the eye of the tiger...


Let me just clarify this before I even start writing - I am a UTK fan... go Vols! However, I am the one one in the house... and am overrun by Auburn fans. I also cheer for Auburn, except when they play Tennessee. And I still love going Auburn football games, which we try to make one game each season. I missed last year - cancer treatment - but, this year we were going... even if I hurt!




I am not a crazy fan - where I cannot recognize other teams great plays. But I do scream at the TV like the team can hear me... cause they can. And I will move seats until they improve. So, I am a slightly crazy fan. My kids think I am crazy (but for many reasons). However, I appreciate the sport. So do not be throwing hate my way when you realize who I cheer for.

There is nothing like football season in the south (if you like football). And nothing like a going to a game and spending the weekend eating at local dives and feeling the excitement on campus. I love sharing that experience with my children. I hope it will instill a desire to want to go to college. To see some of the fun and privileges of continuing their education.


Eating out the night before...

As with any college traditions, you have to wear your school colors (thank goodness both TN and Auburn are orange... even if different shades). If you are lucky enough to spend the weekend in town you generally stay in the cheapest, closest hotel you can find and hope that the weather will be good. Normally, August games can be brutally hot so I was worried about my lymphedema. Fortunately for me the weather was hot, but not the normal Alabama heat that can be humid and sweltering.


Getting ready for some football...


Auburn has a beautiful campus. And I have seen many. While the campus is large, it has an intimate feel with well designed walking paths and beautiful green areas. The large brick buildings are beautifully constructed.

We made our way around Auburn visiting Toomer's Corner for lemonade and Tiger Rags for t-shirts. Of course, in our parental push encouraging education we stopped by the library, student center, and some actual classroom buildings... and made time for our traditional pictures at Samford Hall. The day would not be complete without lunch at Momma Goldbergs where we actually found a booth available. We looped the main drag multiple times just enjoying the pre-game excitement. I walked so much I was worried that my back and legs were going to just give out.


Family traditions... 


My daughter and I opted to go back to the hotel room instead of the game. I can only handle so much time up and on my feet. My arm was swollen, my back ached, and I really needed to lay down for a while. While I slowly (very slowly) made my way towards the car, the boys headed off to the game... ready to watch Auburn win... which they did!

We enjoyed our time in Auburn and even took a quick detour in Birmingham on our way home. Why not, I already hurt???


Silly fun at McWane Science Center... 


In my head...


Even during the most difficult times, fun can be made. No matter how I feel... no matter how bad it is... I choose to enjoy my life. And even though I feel cruddy or tired or sore or ill I want to enjoy the time with my family and continue to do as much as I can.

While I wrote little of my cancer or lymphedema or the fact that the weekend wore me out... I hope that this post shows that the joy of life and the memories we make are so valuable. Stepping away from the doctor's appointments, tests, and general blah of post-cancer treatment is refreshing... even if it is just a weekend get-a-way!!!





Episode Reference: Eye of the Tiger, Survivor song
I couldn't resist for the Auburn fans... 
and Go Vols!





Tuesday, August 26, 2014

Help me Family Dr. You're my only hope.

Episode LXXXVIII - one last thing before I quit...


I finally had it. I caved and I called the Oncologist. I had spent the past month in so much physical pain I was not really functioning. I barely got my kids to and from school. I would get them there and then get into bed. Anything other than essential care was becoming unmanageable. I was postponing appointments (even my very needed medical ones). There just seemed to be no relief. Since Tamoxifen, I was just constantly fighting pain and fatigue and it was just becoming unbearable. So, I caved and I called to complain (again) last Friday...

And it happened. It happened just like I feared. They had nothing to offer. The nurse basically told me to go find another doctor because they do not deal with those issues. However, they would see me if I could not get in with another doctor. For real! Even though the symptoms occurred due to cancer treatment. Even though the cancer medications seem to be causing the symptoms. They do not deal with it?!?!?!

So, after a brief cry (which I never do) I had three options...

  1. Quit the Tamoxifen and hope cancer stays away. Not a good option.
  2. Live a horrible bed-ridden existence, but be alive. Not a good option.
  3. Find a doctor who will listen. Sounds better than the other two!

I am sure there were other options, but I hurt to bad to think of any. So, I called my family physician. He could see me... I just had to get to Tuesday...


Leaving to hopefully get options...


Thank goodness I called and made the appointment. For the first time in a long time someone heard me. I was not looked at like my symptoms were in my head. I was not questioned if I really felt the way I said I did. My family doctor listened... he actually listened to my complaints.

Then something surprising happened... he gave me options to help. Between the constant pain, continued neuropathy, muscle twitching, balance problems, inability to think, and additional hearing loss... I might still have some nervous system issues that I got during and from cancer treatment. I mean I was on medicine for it that I got off of after treatment ended. Maybe (hint - Oncologist) that should have been considered before now. Of course the family doc listened to all my other complaints ranging from insomnia to fatigue (not exhaustion, but I-can't-function-fatigue).


I just want to be in the 0-6 range...


Lyrica. It was an option to hopefully block my pain receptors from constantly telling my body that I hurt. Hopefully it can stop those signals and I can begin to do things that I want to. I was willing to try about anything. I was ready to at least try something... and I had an option!

The other "I will just mention it" complaint was that my throat was mildly sore. Even though I did not have a fever and my throat was not red - I had strep. In my youth, I had strep so much I had to get my tonsils removed. It was something I have not had to deal with since I was 18 years old. Since my immune system weakened during cancer treatment I have had it three or four times over the past year. Hopefully, it will not become a pattern. As for now, I am sure strep probably amplified my exhaustion and feeling horrible.


In my head...


I am now more medicated on a regular basis than when I was in cancer treatment. Ironically, I am taking more medicines daily to function then when I had cancer. Who would have guessed that?!?!


I haven't even put all my pills in there yet...


I was so glad that I made the doctor's appointment!

Lyrica appeared to help. I had to increase the dosage to find the amount that worked for me, but it does block the pain. And it takes exactly 30-45 minutes to kick in. So, anytime I am late on my dosage, I know! The pain is still there and I get bits and pieces of it throughout the day, but I am able to function. I am able to actually do things. I am not forced to sit down, stop, or lay down due to my back, my bones, my body.


 
Attempting some exercise since I feel mildly human...


If you do not change direction, you may end up where you are heading.
- Lao Tzu



Episode Reference: Monkey Wrench, Foo Fighter's song

Monday, August 11, 2014

Lymphedema Update

In case you haven't read in my previous blog posts, after I finished treatment I realized I had some unusual symptoms in my right arm. I did not immediately notice the swelling, but later found out that I did have swelling and lymphedema. Lymphedema can occur after breast cancer treatment and of course why would it skip me?!?!

Since lymphedema has no cure, I have been managing my symptoms diligently. I am going to Occupational Therapy twice a week - or - what I prefer to call my boobie massage (even though it is way more than that). I have been doing my own massages. I have been learning what triggers my swelling. It is another issue that I have to live with, so I am learning how to do it with my crazy up-beat attitude.

Learn some of my Lymphedema Tips - Click Here



 


As for having lymphedema with style, I have gotten a few medical compression sleeves & gauntlets. Currently I have to wear compression garments during my waking hours. Ok, I should wear them when I sleep but sometimes I opt not to (a girl needs a break every now and then). So I bought ones that are exceptionally comfortable... and fun! There are so many patterns and alternatives to the standard one color sleeve. I could not just settle for one. Plus, I have to wear them daily so like underwear you don't just have one pair!!!

Each one looks different and I have gotten so many compliments (and looks) from strangers. Usually people believe I have gotten a very large and detailed arm tattoo. I get the cool look of a tattoo, minus the hours of pain and permanent image. Now I get to choose whatever sleeve matches my outfit and I can change it up as I want to!




A Henna based design...


A colorful design but does not fade...


And one that is a medical alert as well as just funny to wear!


All of these sleeves I am wearing are from the same company, LympheDivas. They provide so many options and patterns that I had to share. Yes, the standard beige and black sleeves are out there (they have pink too), but if you have to wear something WEAR IT with style!


Check out LympheDivas - Click Here