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, 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

Wednesday, August 6, 2014

Surprises at the Gyno!

Episode LXXXVII - give it away now...


Back to the Gynecologist for an ultrasound. After I saw some ovarian cysts noted in one of my reports I had an ultrasound back in June. Today I was going back to recheck my ovaries to see if any changes had occurred since the last visit. I expect to find very boring, non-cysted ovaries...


About to go to check out my ovaries...


I signed in at the front desk and took a seat in the waiting room, The office is full of people... mostly pregnant people. The large office was packed of couples awaiting appointments. I am always conflicted when I am in the office.

On one hand, I am so excited for all of the pregnant women. I talk to them and bask in their joy. I remember those days... not necessarily the joy of pregnancy (because I spent both pregnancies very ill), but the excitement of becoming a parent. Babies. Babies. Babies. They are so cute and sweet and wonderful. And they grow up!!!! I cannot believe that my children are 14 and 7... has it really been that long ago?!?!

Then on the other hand, I am thrilled that I will not have to do those late night hours or deal with all of the care that goes into parenting an infant. I have had such a long year and I can barely handle what I have now. I cannot believe that right before I found out I had cancer we had discussed having more children. We really wanted more kids, but knew that financially it would be a challenge and we were getting too old. So, we practically decided not to expand our family. I was grieving that idea and boom... cancer. I completely forgot about anything but surviving. Plus with the type of cancer I had any idea of birthing more children was gone. So now I sit here thinking how grateful I am to not be pregnant. I mean having kids is great... but they do become teenagers!!!




I knew it was going to be a long wait. However, it seemed much longer than normal. There was a sign that stated if you were waiting longer than 30 minutes to please tell the receptionist. So, I did.

Then after another period of time I heard my first name called. I was sitting in the back so I put down my magazine and turned around to see a woman walk to the nurse. She took her back. Well, I guess there's another person with my name. So, I sat back down. Then after a ridiculously long wait, I went up to the receptionist and talked with her again. She told me she was going to check. They always say that. I mean it had been at least an hour. Come on!!!

Finally, I heard my name ring out again and I made my way to the nurse. I was thrilled to be called because before I arrived I was told that I had to drink a massive amount of water and hold it. I was suppose to have a full bladder. I had been sitting in the lobby about to explode for the past hour. The first words out of my mouth were that I had to pee... really bad!!!

I asked why I could not go to the bathroom before the ultrasound. The nurse looked at me with an odd look and said, "But you've already had it." I looked at her and said, "No. You just called me back." She looked at my chart and was confused. We discussed that I was having a transvaginal ultrasound and that she had images already taken. Well, they were not mine. Seriously!!

I had been given the wrong pre-procedure instructions. (Seriously... only me!) So she sent me to the bathroom while she tried to figure out what happened. It seems the girl (who shares my first name) was given a transvaginal ultrasound. My transvaginal ultrasound to view ovaries. We shared the first same name and she seemed to believe she had one scheduled. I mean I cannot imagine wanting that type of ultrasound unless you needed it. Seriously!!!

After multiple apologizes and a bathroom break I was finally back in the ultrasound room, I got undressed from the waist down and climbed onto the chair. Then I scooted my bottom to the end of the chair and put my feet in the stirrups. Then me and the tech got intimate...

The transvaginal ultrasound (that both Amy's got today) consisted of inserting the ultrasound wand into the vaginal canal. They guide the wand inside until they get enough images of both ovaries. Basically, I am getting molested by the technician... and the pressure needed to get good images of my ovaries was not a pleasant experience.


The ultrasound wand... probing all Amy's... 


The ultrasound was not painful, but it was uncomfortable. There was some pushing and pressure to find the best angles. Normally, I would have to go wait in the lobby again, but because of the crazy mix-up I was given the next available room.

Soon the Gyno stopped by to discuss my ultrasound images. The cysts had changed. One had gone away and the other looked smaller. So nothing appeared abnormal. All good news. Then we discussed my symptoms (some cramping and my Tamoxifen side effects). She thought about everything and decided she wanted to run a blood test to check my estrogen levels. I mean we need to know that I am not producing estrogen... I do not want to be in all this misery for nothing!!!


A vile of blood later...


A few days later, it was official... my blood work results showed that I was in menopause. My estrogen was basically gone and the Tamoxifen was doing it's job. As much as I cannot stand the medicine it was doing what it was suppose to do.






In my head...


I am officially old... well at least my body is. I might be young on the outside, but I am old on the inside. Like every one says - menopause sucks. But I will be living with it for the remainder of my years so I better get used to it!!!

The main thing I learned was to confirm that it is or is not your turn when other people respond to your name. That you may or may not be giving your appointments (and odd procedures) to strangers. I cannot imagine what that other lady was thinking... probably why are they sticking that thing up my... Surprise!!!


“It ain't what they call you, it's what you answer to.” 
- W.C. Fields


Reference Episode: Give it Away, Red Hot Chili Peppers song

Tuesday, July 29, 2014

The beginning of follow-ups...

Episode LXXXVI - don't stop!


Time for a follow-up radiation appointment. At least they are usually short and to the point...


The first part to any good follow up was to take vitals. So, I did the standard blood pressure, temperature, and weight pre-examination. A note to all nurses: please do the weight after the blood pressure. Seriously, it can create false blood pressure issues or at least in can in my mind! Of course my blood pressure was fine, so it did not happen to me: this time!!!

After a quick vitals check the nurse moved me back to a doctor's waiting room. Then she ask the standard questions: Medicine changes. Symptom issues. Nothing overly special to report, but I still made numerous jokes about any and all of these questions. It seem that all doctor's office have a standard set of questions. It seems I repeat the same thing to almost all of my doctor's so I should be good at answering these questions. Today things were the same as last time... I mean I was just here a few months ago.

After the nurse left I had to wait on the doctor. Some offices take forever... I mean FOREVER. My Radiation Oncologist has always been timely and appointments are pretty fast. So, it was only minutes before he got in room and re-asked me the same questions the nurse asked me a few minutes before.




Once we discussed all my "issues" I got a boob exam. That really consists of getting a visual once over to look at my skin. He examines what radiation did to my skin. Even though it is a different color now, I really think all of my hard work (see the tips page) worked. I seem to be healing well. Then it ends with a small breast exam to make sure there is nothing suspicious. My boobs look good!!!

Compared to my Oncologist, my Radiation Oncologist was talkative. He really wanted to know how I am and what issues I am having. Even though the appointments were quick, he was curious about my overall health. I think he must be an active problem solver... or cares!?!?!


In my head...


The appointment went well. Essentially, they did not see anything new or any major concerns. My skin was healing appropriately. I had no new lumps. Overall, a very successful doctor's appointment. I like these short and sweet visits!!!

I seem to be at the start of a lot of doctor's appointments. Between the OT for Lymphedema twice a week, cancer doctors, and other doctors I am constantly going somewhere for medical reasons. Of course my schedule is about to get more complicated as my children are about to start school again... I think it is going to be a busy few months!!!


It does not matter how slowly you go as long as you do not stop.
- Confucius


Episode Reference: Don't Stop, Foster the People song

Thursday, July 24, 2014

Say What? Still can't hear you...

Episode LXXXV - (speak into my ear)



A quick reminder: I began having bilateral hearing loss six months before I was diagnosed with cancer. 

I have pretty much refused to wear my hearing aids during cancer treatment. There were many reason why. First, the cancer cap covered up the hearing aid made the sound crackle. But primarily, it was the general discomfort and not wanting to deal with anything else like hearing aids. Honestly, all of the sounds only amplified my discomfort. It was nice to not wear them... even if it meant I did not always hear what people were saying to me. 




I was supposed to go to the ENT months ago, but had delayed the appointment. It was past time to get a current look at my hearing and adjust my hearing aids. I had been to so many doctors that I really did not want to go back to another. I mean how many issues can a girl get... right?!?! You hear me (I had to say that)!!!

Since I finished with treatment I knew it was time. Also, I was asking my husband and kids to repeat themselves more often than not. I had lost the ability to really understand certain things they said unless I was looks directly at their well-lit faces. No dark conversations allowed or I will ask you "what" more than you like.




The appointment is painless. I mean I go in, I repeat a few words, I listen for some beeps, I meet the doctor. Seriously, it requires very little effort on my part. Hearing tests are EASY, except that I have to close my eyes when I listen for the beeps or I might not hear them. What is up with that? I think I hear with my eyes closed!


Press the button when you hear a beep? If you hear the beep.


The appointment went as expected. The doctor and I discussed my previous neck lymph node swelling. That seems to be under control currently. The ringing in my ears (Tinnitus) was still annoying. Not much I can do for that (light background or white noise is helpful). As for my hearing, I had some minor additional hearing loss - click here to learn what bilateral hearing loss is. 

Thank goodness I only lost a small amount more. Hard to believe but chemotherapy can actually cause hearing loss - however it is usually more common with chemo's Cisplatin or Carboplatin. I did not use those, but I did have some loss since chemotherapy. Let's just assume it was the chemo! 

I am still in the mild/moderate range... I am somewhere near 50... in general I miss words in conversations and usually try to figure it out by context. Often I am wrong and usually I think I heard a curse words instead of what was said. People really need stop saying the word sh++ to me - cause that is really what I hear a lot!

Hearing loss is measured in decibels hearing loss (dB HL). It can be graded as follows:
  • 20-40 dB HL: mild, cannot hear whispers.
  • 41-70 dB HL: moderate, cannot hear conversational speech.
  • 71-95 dB HL: severe, cannot hear shouting.
  • >95 dB HL: profound, cannot hear sounds that would be painful to listen to for a hearing person.

So my hearing aids got adjusted and I was told I need to wear them so that I do not lose the ability to process sounds in the future. I know. I know. I should wear them... but sometimes they only create so much additional sound that I cannot process all of that and my own discomforts. I will begin to wear them when I need them or when I am around people. When I am at home... I will just keep reading the words on my TV and pretend to not hear my family!!! 




In my head...


Another thing that I can check off my To Do List! check. I do not have to go back in another six months. Basically it will be just to make sure I am not losing any additional hearing or having any enlarged lymph nodes in my neck. For now, it seems to be as expected. 

As I go to all these appointment I have one goal - for the doctors to tell me that I am "Unremarkable". In the medical world it means that you are pretty much normal, nothing to remark about. So every doctor I see, I tell them that I am unremarkable! And that is all I want to hear from my doctors. I am unremarkable!


“There is no normal life that is free of pain.
It's the very wrestling with our problems that can be the impetus for our growth.”
- Fred Rogers, The World According to Mister Rogers: Important Things to Remember



Episode Reference: Two Old Men,  Goya painting
Black Paintings from the Quinta del Sordo (Deaf Man's Villa)

Goya was deafened at age 47 believed from an illness.
This figure (rt) seems to be speaking into the ear of his companion, 
assumed to be about Goya's deafness.


Wednesday, July 16, 2014

Swollen Adventures

Episode LXXXIV - just when you think that you're in control...


Attitude is everything. Attitude is everything. I will continue to be positive... even when things are difficult... I will...


I am still the half full cup...


It seems that activity, heat, and general living can create havoc with my lymphedema. I live in the south... with hot, humid summers for crying out loud. I like to paint. I like to type. I like to be busy. Ok, I like to do more than I should after cancer treatment (such as ripping up the old flooring to lay down new flooring), but I am an active person. I am a lot less active than I used to be, but I want to do some of the things I used too. Plus, I am right handed and my lymphedema is in my right arm and hand. Cruel irony!


 
I think I might have been a hand model...


So last week I went to the medical supply store to get a compression sleeve. Apparently I have the biggest upper arm in the world. Ok, that is an exaggeration... but they made me feel like I was freakishly disproportionate. My upper arm is more swollen than my hand. I know... my lymphedema is worse in my upper arm and arm pit area. I cannot have such odd dimensions that a general sleeve will not fit me!?!?!

Because of my freakishness they said I would have to have a custom sleeve. I was shocked because online there are companies that carry my dimensions (I know because I looked it up after I got home). Of course I was more annoyed because an off-the-shelf compression sleeve is around $100-$150 and the special ordered custom sleeve will start somewhere in the $200s. That does not include the price for the gauntlet (glove). Nothing with cancer has been cheap!!!

Even though I need a more durable medical sleeve I felt less rushed to buy it since my OT ordered a compression sleeve that I can wear on a general basis. So, I will wait to see if the ordered one fits before I feel bad because I have one of the only lymphedema arms in the city that is so unusually swollen that an off-the-shelf sleeve is impossible to fit and they will have to do a rare custom order.


Wrap this!!!


Today I was back to my OT getting my bi-weekly massage (boobie massage) when we noticed my numbers were increasing. With the swelling now traveling more to my hand it was time to get a compression wrap. No more waiting for the medical supply store or the ordered sleeve. She was going to wrap my arm like a compressed mummy.

While the wrap looks like a typical bandage wrap, it is different. The pressure garments are made of fabric designed to put controlled amounts of pressure on different parts of the arm to help move fluid and keep it from building up. The wrap starts at the hand and works up towards the arm pit. Each layer progressing upwards. And each layer is tight, but not cutting off circulation. Underneath and/or on top a layer of compression material is placed for additional compression.


Wrap that arm!


My officially wrapped arm is snug. I mean it is tight and hard to move. I now realize the reason the wrap might work so well is because it limits your usability of the limb. I know that they encourage and you are suppose to use the wrapped arm, but everything was tougher to do. I mean I was shifting everything to my left hand from driving the car to answering the phone to eating my meals to bathroom care... left hand please.


 
Compression on! My poor swollen giant hand!


However, by the next morning my upper arm swelling had gone down a little. My hands still needed some relief so I gave myself another lymphatic massage and then re-wrapped myself to hopefully keep the swelling away. I was told to keep myself under wraps for the remainder of the week and all weekend. I am going to get tired of my limitations really quickly... someone grant me patience!!!!


Look the compression is working...

In my head...


So, I am learning that the more I use my right arm, especially in the heat, the more I swell. I actually have limitations... argh! The frustrating part is damage to the lymph system cannot be repaired. The best things I can do is continue the treatment given to control the swelling caused by lymphedema. The goal is to keep other problems from developing or getting worse... and hopefully I can learn to actually manage it long term.

Things that can make lymphedema worse: heat/sunburn (weather affects me), lifting too much weight (even small weight), repetitive motions (vacuuming, mopping, raking, etc), small cuts, shaving, warm showers/baths/water, undergarments (aka my stupid bra), and definitely NO blood pressure, IVs, needles in the arm!!! Learn more about preventing flare ups - Click Here.

I think I am going to have to really gain a lot of patience. I have daily health requirements that will last for a long time... I am suppose to give myself multiple lymphatic massages. I am suppose to wear compression garments. I am suppose to take medicine. Dang it... I have to be responsible for my health! I am inherently lazy about self care!!!

Every one who knows me is laughing at that last comment because they know how true it is!


“The strongest of all warriors are these two — Time and Patience.” 
- Leo Tolstoy, War and Peace


Episode Reference: Here it goes again, OK go song

Just when you think that you're in control,
just when you think that you've got a hold,
just when you get on a roll,
here it goes, here it goes, here it goes again.

Monday, July 7, 2014

Doctors, art, and other things

Episode LXXXIII - It's times like these...



I was back to the Breast Surgeon. It was hard to believe that it had been six months. Wow!!! Really, six months since I had seen him?


Off to the surgeons...


The visit was exactly what I expected... not much other than a breast exam. I had already gotten my mammogram results at the end of May, so we discussed that I looked good any way. My breast tissue looked like it was healing well. In all honesty, the multiple OT massages were helping break up the scar tissue left from the lumpectomy. Not only were the boobie massages helping my lymphedema issues, they were really aiding in my surgery recovery too. Bonus!

Even though I am at OT multiple times a week for lymphedema treatment and still going to a variety of doctor's appointments I have found time to get back to things I love. I began painting again!

During the last year I saw an art exhibit travel through my cancer center. I told myself that I would paint something for the next competition. I happen to look at the Lilly Oncology on Canvas website and noticed that the competition was ending soon. I set out to complete a work in just a few days... I got this!!!

When I paint I like to use bold colors. And it so happens that orange represents emotional strength during difficult times. The orange bald woman was strong and up for the fight. I wanted to capture my fighting spirit. After a few day, I finished the painting and sent it off to New York. Hopefully it will travel to other cancer centers and inspire the fighter in each of us...


The Fighter, 16 x 20 Acrylic on Canvas


I continued my busy creative outlet and actually began writing some articles that are now posted on a variety of cancer websites and healthline. Obviously, I am self promoting... it is my blog... right?!?!

In honor of my fighting painting I have included the beginning of my article on that topic. Cancer has been a continual battle that even after completing treatment, I fight. There is the assumption that once treatment is over the person is healthy and well. I have learned that perspective is not always true... often the survivor is still fighting.

The term fighting is frequently associated with cancer. It is often seen as a fight to survive the illness. Putting on your gloves and beating cancer.

But the fight goes so far beyond that. It goes further than I ever imagined it could. Before cancer, I would see the bumper stickers with “survivor” written within the ribbon. I knew that those people survived. They fought and beat cancer. Now I realize that it is so much more than that. I now have a new, deeper understanding of the fight to being a survivor.
Read More about My Take on Fighting Cancer and Beyond... Click Here.


In my head...


Nothing like more doctors telling you that things look good. I always enjoy those appointments and hope to have more of them in the future.

While I feel weird about promoting myself, I also hope that it will inspire others to do whatever they love. Maybe even try something new. And if it helps someone, even better. Plus it was good to do some productive things... A little bit of painting. A little bit of writing. Being creative is fun!!


“It is good to love many things, for therein lies the true strength, 
and whosoever loves much performs much, and can accomplish much, 
and what is done in love is well done.” 
- Vincent van Gogh


Episode Reference: Times Like These, Foo Fighters song

It's times like these you learn to live again