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...

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

Thursday, July 3, 2014

Let's just say, it's a boobie massage

Episode LXXXII - She's lump. She's lump.


I had no idea what I was in for regarding Occupational Therapy for Lymphedema. I quickly found out that the lymphedema treatment was essentially a massage that helps to redirect the lymphatic fluid to flow in the direction of the heart. Basically, the massage would help the fluid get out of my arm and back into circulation. And it was not a typical massage.

The lymph system is located directly under the skins, so the therapist barely does more than to move the skin. Honestly, the small gentle movements barely qualify it as a massage. It was essentially a gentle touch therapy. However, I call it My 1 Hour Boobie Massage!!!


Something I never would think I would say...
Boobie Massage.


When I first got into the room I took off my shirt and bra. Seriously, after everything I have been through I am wondering who hasn't seen my boobs?!?!

Then I laid down on the massage table and place a light cloth to cover my breasts. Not that it would matter if they were covered or not since the massage therapy was centered around my arm pits, chest, and arms. I mean the therapist was going to be touching and seeing all of my chest anyway. Take a number... my boobies have been seen by just about everyone.


Light touch down the neck... 
(The massage pictures are not me.)


The therapy usually starts with small movements (just a slight tightening of the skin) under chin and down my neck. Afterwards she works my collar bone area out towards my shoulders.

Then the focus is on my good arm pit, or left side, toward my heart and down my sides toward my pelvic region. She starts with my good lymphatic side first... gets the system going and hopefully ready to help aid the other side not working correctly.

After she stimulates my left side it's time to get the bad, or right, side moving. She similarly works under my arm pit towards my heart and my pelvic region. And I will then flip on my side so she can work down my back too. Afterwards, I turn back over and then the therapist gets to really know me... intimately!


Rubbin' the Boobie Area...
(Again, not me... but don't they look relaxed)


Time to focus on my chest. The therapist works on the build up of scar tissue around my many scars and radiated breast. I have a large scar down my right breast from the lumpectomy, across my chest for the port, under my arm pit in multiple spots for the axillary lymph node dissection/drain tubes, and some hardening from radiation under my breast. She works hard to break up all those lumps, tissue, and general mess irritating me. See, I told you... a Boobie Massage!!!

Most of the time during treatment my right breast is being worked on. After she gets it good and massaged the therapist starts to work the lymphatic system down my arm. She will massage it until she gets to the tips of my fingers. Each massage movement was so gentle that I often wonder if something so simple could work.

My arm is definitely showing lymphedema swelling, so I get two Boobie Massages a week. Not only that, I am suppose to do the same massage to myself multiple times a day. Really... I was just given a prescription to touch my boobs!


In my head...


A note to all women about to go to their first OT appointment for lymphedema treatment for their chest or arms, if at all possible leave your children at home. My very first appointment I brought my daughter. I was not aware that I was going to get naked and felt up in front of her. Thank goodness she was so wrapped up in the technology I brought that she was completely unaware. One of those classic moments in life - making memories here!!! 

It seems that I have a boob theme going on right now. I cannot seem to get away from clinical touching. However, I am always surprised at how tired I am after treatment. I guess an hour of rubbing an area that feels bad can wear a girl out. I think I should be rejuvenated and all energized. Apparently, all that focus on my chest can be exhausting. The massage really does work and gets the lymphatic system pumping - it seems to be helping the swelling. 

I am lucky that I really enjoy my therapist. She cracks me up! I think I am lucky, as it should be important to enjoy the company of the person who is massaging your boobs!



“Healing is a matter of time, but it is sometimes also a matter of opportunity.” 
- Hippocrates


Episode Reference: Lump, The Presidents of the United States song

Tuesday, June 24, 2014

Seriously... Lymphedema too!!!

Episode LXXXI - Doctor says you're cured but you still feel the pain


After my summer family vacation where I probably partook in too much sun & fun I began to feel like my armpit was swelling more than normal. I mean I was constantly having to adjust my sports bra because of swelling. I wanted to ignore it because I did not notice any swelling in my arm, but eventually the other side effects became to bothersome.

The numbness and tingling sensation in my hand continued. Besides weakness in my right arm I found an inability to reach properly. I mean holding the cell phone to my head became challenging. It was annoying! So even though I tried to avoid calling the doctor, I finally had too.

Of course the oncologist was like, Lymphedema. I figured that, but I was really hoping not to deal with another issue. I mean really - another issue. Come on!!!

Find out more about Lymphedema - Click Here.

Today was my scheduled appointment with a therapist to help manage swelling and side effects caused by Lymphedema. Since it was a late appointment I had enough time to fit in a fun afternoon with my daughter. It's summer and I am busy - I have fun to do. Darn arm... you won't stop me.

We went to the local botanical gardens, which hosted an Alice in Wonderland theme. We made our way through a rabbit hole, door maze, and even got to be Tweedledee & Tweedledum... guess which one I was going to be!!!


Summertime Girls Day...


Afterwards I made my way to the therapy office and began recalling my memories of physical therapy from my childhood. When I was younger I had multiple knee surgeries which required physical therapy. Yuck! I imagine pulling and exercises and painful hard work. I have horrible memories of it. I was young. It hurt. I really was not looking forward to the appointment. Yuck!

As I sat there thinking "Yuck!" I actually read the sign on the door. What a d'oh moment... Apparently that physical therapy appointment I had was actually for occupational therapy. I have so many medical appointments I don't even know what they are for any more!!! On the positive, it was not physical therapy. Plus, I showed up at the right place at the right time (not always the case, just ask the dentist or the imaging center or the... well you get it).


It's OT not PT?!?!


The appointment consisted of discussing all my symptoms which were common signs of Lymphedema. Then I laid down and she marked spots all up my hand and arm with a marker. Then she measured around the marks on both my right and left arms. Those measurements would help determine the amount of swelling I had. While I thought my arms looked the same size she said that swelling was not always noticeable with the eye. Basically, that unless I had tiny arms I may not be able to tell. And unfortunately, I do not have tiny arms!!!

So, I spent an hour getting my arm measured and having a fun conversation. The therapist was hysterical and we really hit it off. I think I am in for some interesting conversations during my treatments!!!


In my head...


I have to laugh... I mean I barely had any lymph nodes removed and I got Lymphedema. I guess I should be thrilled that more were not taken, as it could be worse. It is kind of funny, come on, if you think about it... it's funny!

Once again, I am thankful for my twisted sense of humor!!!

Next week I actually start OT. Who knows what that will be like?!?! From what I gathered it will be nothing like PT and for that I am extremely grateful. I get to undergo something new... It seems my cancer journey keeps giving me new experiences.


“Experience is what you get when you didn't get what you wanted. 
And experience is often the most valuable thing you have to offer.” 
- Randy Pausch, The Last Lecture


Episode Reference: No one is to blame, Howard Jones song