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, May 5, 2015

Vandy... the quest for answers

Episode CXVI - I felt so good like anything was possible


I wanted a comprehensive look at my cancer side effects. I wanted someone, somewhere to actual look at all my scans, tests, and reports as one collective cohesive sum. I was tired of multiple specialists doing one thing and then sending me to someone else to handle something else. It seemed no one taking my whole health into account other than my family doctor.

So, like normal... I was going to be my own advocate and search for my own answers.




Thank goodness for the vast information on the Internet (even if sometimes that can be negative too). I searched and found nothing at first. After I changed my wording for like the billionth time, a few hospital and treatment centers showed up having survivorship clinics... interesting!

I had no idea about what a survivorship clinic was but, I was intrigued. I began to search for one close to me. It took a while, but I found that Vanderbilt had one. When I read the mission statement I was interested:


REACH for Cancer Survivorship
The REACH for Survivorship Program is Middle Tennessee's first dedicated Cancer Survivorship Clinic. We serve all survivors regardless of age, type of cancer or treatment location. We help meet the unique needs of pediatric and adult cancer patients and serve as a bridge between specialist cancer care and primary care.

The cohesion of specialist care and primary care was exactly what I was looking for, so I immediately emailed them with a short summary of my history and concerns. After a response email and a phone call, I was scheduled for an appointment.

Click here to find a cancer survivorship clinic near you.

Vanderbilt is not far, but it is not close either. It was going to be a day trip and I needed help. My mother drove in town to take care of my kids and I had a friend drive me up to the appointment. Thank goodness for the many people in my life who care about me.


Getting ready for Vandy!


I am lucky to have people helping me out. While I am capable of driving myself around, I have learned I can only do so many hours in a car driving. I dread long hours in the car. I dread hours in the car period. I could probably drive myself, but I would have to spend the night. I had a friend who offered to take me, so I let her.

Sometimes friends just fall into place. She happen to me that way over the past year. We are both raising kids in the same high school and she unfortunately just dealt with breast cancer too. We have different types of cancer and opted for different treatments, but I knew she would understand anything I might say during the visit.

It is funny. I have no issue (any more) about having people with me to see a doctor. In all honesty, I would share my medical history on here if I knew it was going to help someone. Heck, I pretty much am right now!

Any sense of shyness or privacy almost fades away after cancer. Especially with other cancer alumni - we are part of some unsolicited club that unites us. No matter what type, treatment, or choices we have made... there is an unspoken understanding. We also use each other's experiences as resources. While cancer sucks, the people I have meet through cancer are amazing!




The Vanderbilt appointment was informative and refreshing. I was not treated like my symptoms were abnormal or unheard of. I was not treated as if I was the only one with post-treatment problems. The doctospent two hours with me when I was allotted only 1-1 1/2 hours.

Not only had she looked over my chart (which was more than my last Onc visit), she had summarized my care. I was given a detailed medical cancer history form listing all my treatments and what those treatments could cause to keep with me and give doctors in the future. This immediately spoke to my nerdy organizational management background. This was something that she said should be standard now. And something neither me nor my friend had gotten from our cancer center. It was really cool!




My complaints or concerns with Tamoxifen were acknowledge. She discussed that I could take a short break from Tamoxifen (15 days) under my Oncologist care to see if I felt better. Then I could make a decision on having a hysterectomy and try new medications or get back on Tamoxifen. While they still do not recommend me getting off because of my high risk rate for future cancers, they were willing to work with me.

We went over my long list of issues, which if you have read any of my blog know are many. It was nice to not be looked at like I was complaining about unheard of complaints. She felt that the many symptoms I had are treatment induced and that they may or may not go away.

Since I have so many problems, she said I would probably be a symptom treater. Basically, I need to treat and manage each symptom. She suggested PT, OT, and finding different options to treat the many treatment induced problems I am having. We discussed alternative options including pain management. Nothing was off limits! When I suggested something different she listened and found ways to work with me.

She was the first doctor in a long time to not ask me about my mood because I was complaining. So, I asked her. Her response let me know that she understood. She said she could tell that I was not depressed just frustrated. True!




There was no judgement. There was no you have to do anything. That my quality of life mattered. That my input about my health mattered. She was on my team and was willing to get me in with whoever I needed to help my care. Like I said, it was refreshing.

At the end of the visit she looked at all of my lumps, bumps, and complaints. Her reaction was so different then the NP I just saw at the cancer center. She said that if I had an established doctor there they would do an ultrasound on those areas that day. They were proactive and I like that. It is always better to be safe then sorry.

Sadly, I do not have a doctor there so I was going to have to go back home and call my Breast Surgeon to schedule everything. The Oncologist NP had already looked and ignored those things, so I was too frustrated to deal with them again. Hence, reinforcing the fact that I needed a new Oncologist!

I left the appointment with things to do, books, resources, and referrals. Most importantly, I left with options and hope.


In my head...


The facilities and people at Vanderbilt were great. They even have free classes for cancer survivors that encourage health and wellness. I was impressed with all they had to offer, but disappointed I could not use it all do to location... because I would.

My friend and I left the appointment with a lot to think about. We were both almost taken back at the lack of judgement towards the patient. Our experiences have been different. There has been almost a irritation if you question (or in her case actually choose a different) treatment. It was nice to feel like our questions were not some secret plan to undermine the doctor's knowledge and ability.

In the end, we have to live in our bodies. We have to live with the treatment. So, we should be part of the decisions.




I can say one of the best parts of the trip was that we made it a girl's trip. We drove around Nashville and talked about things we might like to do next time. We went out eat before and after. And we talked and talked... and talked. It was nice to have someone else's view on the appointment and the choices I was considering. Especially someone who is facing a lot of similar choices.

By the time we got home I was feeling tired, sore, and hopeful!




Episode Reference: Runnin' down a dream,
Tommy Petty & the Heartbreakers  song

Thursday, April 30, 2015

Oh lymphedema... you pain in my arm.

Episode CXV - has got me by my soul to squeeze


I was never warned. No one talked about lymphedema. I never really understood what it truly was until I was diagnosed. I am not even sure all my medical providers understand it. How do I expect others to know? How can I help others understand it?

It is every second of every minute of every day...

There is no break from it. I am always having to manage it... to hope that I have done enough to prevent a bigger problem. I have to think about everything I do. The simplest things can create the biggest problems.

I cannot escape it or take a vacation from it. I will never get that break.

There is no cure.

It is that simple. That is what people do no really know about lymphedema. That it is a lifelong condition. That it does not go away. People do not want to hear that. They cannot believe that. They want there to be a solution... a fix. They want to believe that maybe I am wrong, that I do not know what I am talking about. There has to be a cure.




I live managing and preventing.

My daily life is affected, even if I wish it was not. Small actions cause big problems. Each day can have its own unique set of problems. The daily struggles. The daily swelling. The daily discomfort. The daily pain. The daily numbness. It is an unfair reality that does not end.

My life is full of triggers, things that set lymphedema into affect. There are so many, so many things that make my body fight against me. I have written a long list of tips, because I have experienced so many triggers causing swelling, numbing, and pain. I have become hyper-aware of my arm and the things surrounding it.

Things I never even thought about, things that were automatic are suddenly obstacles. Holding my cell phone to my ear, driving my car, typing on the computer, preparing dinner for my family, and so many things that would seem simple and standard have become challenges. Even cleaning up from going to the bathroom is challenging.




I overcome small painful hurdles everyday and I do it silently.

I walk around with neuropathy and pain. I can not express how challenging everything is while I am doing it, as it would be like a non-stop chatter of annoying pain complaining. I keep it to myself. I smile. I continue on hoping that my actions will not cause bigger problems for myself.

I have had to learn when to stop. My ability to do things has changed. I cannot push through the pain. It is not that simple. I have to stop, not because I want to... not because I am lazy... if I do not stop I will cause my lymphedema to go to a place where I cannot manage it on my own.




You might be thinking... lymphedema... what is the big deal, you're just swelling? Sure, it is obvious since lymphedema even has the word edema in it, which means swelling.

Swelling is one aspect of it. I am not sure that people are aware of the pain that comes with edema. Swelling hurts.

The lymphatic system is a network that coordinates the immune system. Lymphedema is when that is not working properly, there is a blockage. The lymphatic system is not functioning properly. It is more than just swelling. If untreated lymphedema can cause serious problems, tissue hardening, and other chronic infections/illnesses.




In my case, lymph nodes were removed and a lot of lymph nodes were radiated during my breast cancer treatment. It is a broken, blocked scarred lymphatic mess.

No one really talks about preventing secondary lymphedema after mastectomies or lumpectomies, but there are things to help (exercises, compression sleeves, general arm care). No one talked to me, until I began having range of motion problems, shooting pains, tightness, and general discomfort. It was already too late.

Unless I want additional complications and costs, I have to manage my life. 

I live daily in compression garments. And while they may look cool, cause I am down with the expressive beautiful fashion garments, they are made for compression. It is like someone wearing arm & chest spanx non-stop without ever getting the freedom to just let it go. I live in restriction.

The small lymphedema annoyances are tolerable, but when my chest and armpit region begins to hurt I know I am doing too much. I feel the beginning of the pain in my chest and arm. I see the swelling pockets throughout my trunk and forearm. I have long lymphatic channels in my breasts, armpit, and arms that are painful. I have gone too far. It will get worse. My body is alerting me to stop.

I have to compress every day. I have to wear these darn sleeves & gauntlets. I have to strap myself into a giant blue arm wrap compression machine that squeezes and squishes me. I have to give myself lymphatic drainage massages. I have daily health measures to make sure I do not get out of control. But, all I want to do is be free.

At the time I need to wear these restricting prevention tools, I just want to take them off. I want to let it swell. I want to not feel the constricting discomfort. I just want to be.


 


I want the freedom to go without the garments. I want the freedom to wear a normal bra again. I want the freedom to wield my arm in crazy motions and without pain. I want the freedom to do the things I once did.

Freedom is not an option, at least it is not now. I have to wear my garments. I have to feel the confining pressures to prevent a greater problem for myself. I am held captive by my own body.

Breast cancer is a taker. It takes from you. It continues to take. Financial. Health. Lifestyle. Physically. Emotionally. Mentally. Cancer takes. Breast cancer is also a giver. It gives a lot of unwanted things.

Lymphedema has changed my life. 

Besides taking away my normalcy, it tries to take more away from me. I am an artist. I love to draw and paint. It is one of my passions. I struggle to do what I love. I fight my own body to do what I love. I will take the risk of swelling to do what I love. I want to paint unregulated, I want back those long hours of uninterrupted creativity. Instead, I monitor myself and paint for a short amount of time and stop. I am doing what I love, but I am doing it on lymphedema's terms.

I have found a small vocal online community of other lymphies (those with lymphedema) who like me are also trying to educate the public. We all come from different backgrounds and different places. Even our reasons for having lymphedema are different, but we all understand the frustrations. We all know the importance of sharing our stories of living with an uncurable illness.




It is the simple fact that if we can get the world to understand then maybe it can change. Maybe we will have insurance cover these garments we wear or the medical devices we need. Maybe the awareness will lead to finding more research or understanding of this lymphatic illness. Maybe even a cure!

My arms may not always look swollen, but beneath the facade lies an constant tight, numbed, and pained arm and trunk. It is something I fight with every day. It is something that I do my best to contain. However, I cannot contain the desire for more awareness and support of lymphedema.

I want awareness for anyone facing breast cancer to know how to prevent lymphedema. I want any one who will have to remove lymph nodes to realize the risks. I want understanding and compassion for people born with lymphedema. The more awareness there is the more reason for change.

My story is one that I hope will help others find comfort in knowing they are not alone or as a source to educate and prevent secondary lymphedema. I want all types of lymphedema to be heard, understood, and researched so that it can change.

I live with the constant reminders of breast cancer. I live with the constant disabling aftermath of breast cancer. Secondary lymphedema is one of my breast cancer war wounds and now one that I have to continually fight.


Episode Reference: Soul to Squeeze, RHCP song

Tuesday, April 14, 2015

my oncology follow-up... a waste of time?

Episode CXIV - treats me like a rag doll



I have come to really dread my oncology follow-up appointments. It is not because I am expecting bad news... nor good news... I think I am sick of no news.

There is nothing wrong with my oncology group. My Oncologist is a really nice guy. But being a nice guy is not enough. It is not enough to just flip through a lab result, pacify my complaints, and send me on my way in the span of maybe 5 minutes.

And even though I had multiple exams, referrals, and other concerns last visit, I was not even scheduled to see my Oncologist. I was going to see the Nurse Practitioner (NP). Before, that may have been alright, but I had no idea about it now... as I had never met the new NP. I was going to an appointment with basically a stranger, who by all accounts knew nothing of me, my treatment issues, or the multiple "recovery" complaints I have been having.




Normally I do not think I would have minded the new person. I think I was tired of going into the oncology appointments and getting no support... no options... no information. I did not feel hopeful that she was going to be any better than what I have seen.

I am sick of the looks that my side effects are weird or unusual. I know they are not, because I have read countless blogs, posts, and other social media outlets with other breast cancer survivors having similar complaints. I am not alone. I am not weird. And it is real.

I began having my "unusual" side effects during treatment. I have spent almost two years complaining and getting no answers. I have spent almost two years searching the internet for other people like me to find potential solutions. I have spent almost one year being tossed around between other specialist because they do not want to handle it or step on each other's toes. I have spent two years in some type of pain.

I do not think any one would be surprised that I felt like this appointment was going to be a waste of my time.


Waiting... just wanting it over...


The Appointment of Contradictions


I am officially renaming this wasted appointment, The Appointment of Contradictions. I am not sure if it was my complex nature or the fact I was not willing to put up with any crap, but I am pretty sure the NP does not like me.

When she walked into the room and asked, "How are you doing?" I said, "I'm alive." I have no idea why, but she was taken back. I can see we are not going to be using dark humor during this appointment.

I am always stunned at the fact that at a doctor's office they are almost always surprised if you say you are not well. I am at an oncology center... it is not exactly high on my places to be! It was as if she expected me to say, "I am amazing. I am so grateful that you saved my life that even if I had a complaint I would never say it. And plus, every one after cancer feels good."

Seriously, I have miles of complaints in my chart. I have lists of medications. I mean really, you expected me to lie and say, "I am great." I thought this was the place I was suppose to say the truth, to express problems, to find solutions. Am I foolish for thinking that we are working together in my health care?




Since I realized my sarcasm was not going to be taken well today I immediately told her I knew my blood work was fine, as I just had it checked by my family about a week ago. Plus, my blood work has always been fine... even when I was not.

So, I opted to jump right into my immediate concerns before we even addressed the continued issues.

I wanted her to examine a hard area (not sure if it is a lump, but it is something new my husband noticed) in my left non-cancered breast. I wanted her to feel a funky right armpit lymph node. And I had this new and unusual growth thing on my left forearm near where I bend my arm.

I have no idea if any of these things are real concerns, but they are changes. Let the contradictions begin!




Contradiction #1


  • When the NP examined the lumps, bumps, & unusual growths she did not believe it was anything bad. She could feel the lump one way, but could not feel it when she moved my breast in another direction. The others seemed unimportant.
  • She then asked me when was my last testing dates. Of course, I do not expect her to know off hand, but come on this office orders those things... look at my chart much. 
  • I told her about my last exams and that my next mammogram was in June. She asked why I had not had another PET, even though the oncologist had just told me he did not think another one was necessary. 
  • Then after a few minutes she completely dropped the idea of testing anything even though she had repeatedly asked me about it.
  • Her final suggestion was to wait until the June mammogram.
  • When I sarcastically (and to prove a point) commented that if it was cancer then it would still be there, she got slightly uncomfortable. She then was like no, if it is aggressive then waiting until June would be bad.
  • Then the NP said I could either wait until June or go to the breast surgeon if my husband was really worried, as she was not a breast specialist...
  • So... wait til June? contact the breast surgeon? watch it and see? I still do not know what to do?




Contradiction #2


  • When I complained about my crazy medical appointments and weird side effects, the NP seriously looked at me and said, "but, you were doing so good."
  • Holy Moly... has she even read my chart? I know this was our first meeting together which means she assumed I was great or obviously got me confused with another patient. I have been complaining every visit since sometime during chemo treatment. I do not throw a huge fit, but I do let them know how badly I have been. And they have sent me to a number of specialists - implying that maybe I am not doing well.
  • Then came another kicker... she said, "well, you had these symptoms prior to treatment... right?!?!" No. 
  • Again, has she even looked at my chart.




Contradiction #3


  • When I complained about all those side effects a few minutes ago, I also mentioned the insane cost of prescriptions I was know stuck with since treatment.
  • The NP calmly and seriously asked me, "well, don't you have insurance?"
  • I think I might have given her a, WTH look... even with insurance my prescriptions are crazy expensive. Should they not be concerned with that? I mean the idea that all that expensive cancer treatment has led to expensive post-cancer treatments... 
  • And maybe you should work on your bed-side manner...




Contradictions #4


  • During previous appointments I have asked the oncologist if the side effects I currently have are due to Tamoxifen. This was something I have questioned since I started taking hormone therapy. He assured me that it was not and almost laughed at the idea.
  • Then the NP asks me, "have you ever thought that it might be the Tamoxifen?"
  • I almost fell out of my chair. I am now wondering if the oncologist and NP are even on the same page or work for the same place. I am completely confused. 
  • But since she mentioned Tamoxifen, I had to ask... with all the craziness and illnesses and side effects I am considering getting off of my cancer meds... 
  • You would have thought I said something horrible. She was like "NO, you can't!"
  • I was like, "I can. You may just not recommend it."
  • She of course looked over my actual breast cancer pathology and informed me that I was too high of a risk for recurrence to not take hormone therapy.
  • I had to ask, "how high?"
  • Seems I am "extremely high". But, wait... she did just tell me to wait on that potential place in my boob? I am total confused.
  • Then she mentioned that I could have a hysterectomy to change to a different hormone therapy. I am still on the 10 year plan no matter what, but I could try something else... even though they all do the same thing.
  • Of course nothing is that simple. She then went on to say that if I do that I will have to come back to the cancer center every 6 months to get a injection because that medicine causes your bones to thin. 
  • Not only would I have to pay for more medication and doctor's appointments, I would have additional pain in the butt treatment... does this ever end?!?!




Contradiction #5


  • Then the kicker, the one that always annoys me more than probably any other thing that happened. Apparently all my complaining and questioning and not accepting the bull-crap responses led her one of the only questions she asked me, "I need to ask about your mood?"
  • Yes, she was seriously asking me if I was depressed. I should be after every thing they have put me through, but I am actually not. I mean I had laughed and joked and been a smart-ass throughout the whole appointment, but there is the assumption that if you complain... if you are dissatisfied... if you refuse to take the contradictions and call them on their crap... well, you must have a mood problem!
  • I think my response was, "I am not depressed, but I am pissed off." I have been in pain for over two years and all I get is the run around. I get no answers. And if I even show any emotion other than joyful admiration for them then there must be something wrong with me. 


An irritated me...


Contradiction #6


  • At the end of the visit, it was time to schedule my next waste of time oncology follow-up. I mean seriously, if I do not have an active cancer that is needing chemo or radiation why do I even have to be there. She scheduled me for 4 months...
  • They had always been scheduled for 6 months. Why do I need less time, as I should be getting further out? 
  • Seems I should have been coming every 3 to 4 months this whole time. Seriously, I am so confused...



In my head...


At this point, I am just grateful that I have the Vanderbilt appointment scheduled soon. I cannot imagine why, but the NP was glad too. I think she was hoping that I would not return.

I was feeling irritated. But, I think that is to be expected when your own group has ignored you for over a year and you have to advocate for yourself so much. Plus, I am not being a "nice patient" and keeping my giant trap closed. They have to be glad I am going somewhere else... then they do not have to deal with me. Justifiable Crazy Patient!?!?!


Day of the appointment and over a week later.


Not only did I leave the appointment worn out and confused and annoyed, I was beginning to bruise. They had such a hard time getting the blood out of me that they had to raise my vein. It was really gross feeling. The nurse did ask if I had water, but I actually had water that morning with my first prescription dosage of the day. Guess I need to drink more water... or I need to avoid getting a needle in my arm.

Instead of an inspiring quote...





Episode Reference: Jane Say, Jane's Addiction song

Thursday, April 2, 2015

Down the Hatch

Episode CXIII - going down in it


It was time for my second diagnostic procedure to try and figure out my swallowing problems... the nasal endoscopy. Basically, the ENT was going to shove a narrow tube in my nose and down my throat to examine me from the inside. Seriously, I know you are jealous...


Waiting with one of my favorite people!


Not only was I going to endure the nose-raping, I was going to do it with my youngest watching. Take about traumatic... for both of us!

I was only two days post-medical DP (front & back examined on the same day) and I was getting really tired of being poked on. Plus, I had the flu test once and I knew that things going up the nose can be... seriously uncomfortable. Like someone was jabbing your brains!




However, I had to put my own issues aside for now because I had a sweet little impressionable girl watching. Instead of having time to even think about how I felt, I spent the time explaining the procedure and reassuring her that it was all going to be fine. No way it would be bad. And even if it was, well it must be done. That it was only going to last for a little bit and we can all endure things we do not want to do.

It was a good time to show her we have to do a lot of things we do not want to do and often things that are not fun. I guess I was showing her a lesson in positive mindset, as well as being strong!


"They are going to put that tube down you nose and watch???
I'm not looking."


Here is the medical jargon of what they were about to do...

After the nurse uses a numbing spray (Lidocaine), then the doctor will insert the endoscope (tube, light, camera combo) up your nose. It will project the image on a screen for the doctor to watch and record the images.




In case you are curious, the tube is slender and flexible and feels longer than it probably is. You will tilt your head back which unfortunately (or fortunately) does not allow you to see the screen. Unlike the Sigmoidoscopy I just had... were my innards were in front of my face. I wanted to watch - I am weird like that, but instead I just watched black tube being shoved down my nose.

My ENT was going further than my sinuses and down my throat. The transnasal esophagoscopy examines the esophagus and the swallowing tube between the throat and stomach. So, the tube goes past the nasal cavity and down the throat... did I mention down the throat?




Now that the educational, sciency pictures are over here is my personal take on the procedure... be prepared to be amazed...











I am sure my very deep thoughts on the nasal endoscopy where enlightening?!?!

The ENT saw what the speech pathologist saw, plus a deviated septum (explains my snoring) and a tongue issue (weakness probably nervous system related) and a narrowed esophagus on one side (probably from traveling radiation). He agreed with the speech pathologist and said when I wanted he could do the esophageal dilation procedure (expand the esophagus).

I am opting to wait. I think I have enough going on and need a break. When I choke more than I can bare, then I will do it!


In my head...



The most unusual part of the experience was the fact that the tube is right in front of your eyes and it just looks like it is being repeatedly pushed down your nose. And right in front of your eyes!!!

Did it hurt? Not like HURT, but it was not fun
Was it uncomfortable? Yes

I would not say that it felt good, because it did not. Even the numbing spray (which is shot up your nose) was wrong... plus it tasted weird as it drains down your nose to your throat. I would not say that it was not completely painless, because it was one of those weird pains that you know is not hurting you, but you feel extremely uncomfortable and not right. It was a stop that kind of thing.

It was not something I really want to do again, but I would take it over some of the other procedures I have had. Maybe that is why, for me, it was not bad... because of my insane long list of medical examinations.

I will say that breathing and relaxing helps. It helps in pretty much all exams I have had. I know that is easy to say when you do not have tubes going in all your holes... but, I had things go in all my holes in just a few days. That is just wrong. I just have to... breath!!!


“Remember to breathe. It is after all, the secret of life.” 
- Gregory Maguire, A Lion Among Men


Episode Reference: down in it, NIN song


Tuesday, March 31, 2015

A not so normal day of... Medical DP?

Episode CXII - buns up kneeling wheeling and dealing



I guess it was bound to happen. I mean it was bound to happen to me. I was scheduled for a true medical double penetration day... get your minds out of the gutter or at least attempt too. I was going to both the Gynecologist and Gastroenterologist in one day.

Why would any human being schedule a vaginal exam and sigmoidoscopy on the same day? Are they completely idiotic? Possibly. However, when they are the only days you can get and you are told you have to go, you take it. You drop your drawers and you take it!




The last minute scheduling of both was due to unexpected issues. My lower region has decided to go haywire. My front was acting unusual. I had no weird symptoms, but I was leaking. My back was acting unusual, it was bleeding. So basically, I had issues both holes and they had been going on for a while. Not only did I get the DP today, I still had my nasal endoscopy on Thursday... I was getting it from both ends this week!!!


Making the best of it...


To start this medical nightmare of a day, I showered. There was no way that I was going to go to the Gyno without showering. It was bad enough that I was going for an appointment about discharge. There was no way I was going to be unclean. I think most women feel this way. When people are going to check the lady parts out, we want them clean!

When I got to the office I did my normal waiting routine. Gyno offices take a long time. All those people out there having babies... taking up time...

On the way back to the room, I requested a urine culture. It was not that I was expecting an infection, but I wanted them to be sure. I was glad I asked, as they found some white blood cells in the urine. That is usually due to an infection, but they would send it off to be sure. There was no need for any medication as my family doctor had seen me yesterday and prescribed me an antibiotic due to some complaints about my lymph nodes in my right underarm area. So, either way... I got it covered.

Step one completed... peed in cup!

My Gyno is so funny. She cracks me up and makes every visit easy, which is a good
since she is all up in my business!!! As she was performing the exam she loudly says, "You have a yeast infection and it is a mess up in there." Words every woman wants to hear.

I had an internal yeast infection, so I had no typical symptoms. No burning. No itching. No real way to know... other than my intuition and realization that my leaking was not normal. Listen to your bodies people!!!

Step two completed... exam complete!

I left with a prescription to treat the yeast infection. And since I am "unusual" (she said it) I was given me extra dosages. She knows me too well.

By the time I made it home it was time to prep for the sigmoidoscopy. Yeah! I can not imagine why they need a cleaned out back end. So, I was suppose to use two enemas before the procedure. One at least 2 hours before and one 1 hour before. They recommended two, so I did three over the period of the time... I am "unusual".


TMI... It happened!


There is nothing like the cold bathroom floor. There is nothing like giving yourself enemas and waiting on that cold bathroom floor. I will spare you the details... you are welcome!

Step Three... expelled bowels!

I arrived at my 1 pm appointment ready and willing to make the experience good... tolerable... funny... something. The nurse at the check-in desk asked me who my doctor was. I forgot. I seriously blanked. I had no idea who he was, but I knew his last name started with a "P".

The minute she looked at my chart and told me his name, I felt ridiculous for forgetting. However, I have so many doctors now and so many appointments I honestly could not remember. Plus, my brain has not returned from treatment and the other medications are not helping. Sure... that's what it is!!!

I made a bunch of inappropriate comments. Duh! There is no way I could not make jokes all day. I mean they are going in my bum. I am not going to be medicated. It is a raw rear-entering examination.


Flexible Sigmoidoscopy... thank goodness it's flexible!


The entire procedure is odd. First off, you are awake, naked, and talking to the doctor throughout the exam. A narrow tube goes up your rear and the images are displayed on a large (and I mean large) television right in front of you to see the entire process. The entire process!

Step Four... make excessive inappropriate jokes!

Sometimes there is still unexpected things that happen. No matter how prepared you are, there can be moments that surprise you. And well, I was unprepared for the visual images that will forever float in my brain prior to the internal pictures I was prepared to see.

The camera on the thin tube is turned on before entering. Basically, I got a view of my butt... then my butt cheeks being spread... then my rectum... and then... he's in...




When my giant bottom was up on the TV for everyone to see all I kept thinking was I hope I cleaned well, as there was no time to shower after the last enema.... please... please... let me have wiped my very best. I had, but either way too late!!!

The trek up the intestines to the sigmoid colon is right in front of your face in theater sized images. The tube will climb and you will see water flush off any residue. And thankfully there is very little (thanks 3 enemas). It is surprisingly very pink! Then it happens... there is one point where you are told, "this is going to be uncomfortable."

Anyone who really has done anything medical knows that means it is going to hurt. In the exam, there is a point when they have to make a turn... and that means they keep at it until they make the turn. It was not the worst pain, but it was not fun.

Step five... remain calm!

Of course, I suggest long deep breathing. It really helps with the continued climb through the large intestines. Trust me they are going to make their way there whether you like it of not. Breath.

Throughout the exam the nurse and doctor will repeatedly ask you if you are alright... well, nooo!

Step six... lie... this is all ok!

After the tube reaches the top, it move backwards slowly and the doctor really examines everything. I got to see my diverticula (which really are pouches in the lining). That was pretty cool. Then we made our way back even further and we got towards the rectal area. There was a hemorrhoid, fine. But there was an area that was inflamed. It was red and irritated and swollen. The skin was not nice and pink. He decided to take a few biopsies. Snip. Snap.

I watched as he took three samples from my intestinal lining. It looked like large metal tongs cutting out my skin. Then there was bleeding. There should have been a disclaimer...




The doctor and nurse in the room are constantly talking to you. And the conversation is actually interesting. It is rare that as a patient you get to see and learn about what they are doing and why. That was the positive aspect of the procedure. Plus, they actually give you insight into what is going on.

Step seven... exam finished!

It is not the worst experience I have had. I have endured far worse, so the minimal discomfort and awkwardness is something that does not phase me anymore. I was just glad to be done with it. And for me, it looked like I was inflamed for some reason which was causing the bleeding (and the hemorrhoid probably did not help). But overall, well overall... I looked pretty good. I was a bit tired, even worn out.

But medical DP will do that to a girl!!!

Step eight... do nothing!

In my head...




Episode Reference: Dinah-moe Humm, Frank Zappa song
(too foul to post here!)

Wednesday, March 18, 2015

Can't hear. Can't swallow. They are overrated anyway!

Episode CXI - moving to the country gonna eat a lot of peaches


Time to hear if I am still deaf??? Yes... yes... I am... or at least that is what I think they said, but I could not really hear them.


off to see my ENT


My hearing has stayed at the same level of loss since I finished treatment. I was actually glad that I had not lost any additional hearing. So on that end, it was a successful visit. However, I was still upset that I am unable to wear my hearing aids. It is not that I do not want to wear them or cannot wear them. I choose not to wear them.




With all of my nervous system problems the use of the hearing aids makes me feel like I am if amplifying everything. It's as if the additional processing it takes to hear only makes my pain increase. Weird, I know. I am not alone. Even my google searches on sensory sensitivity and fibromyalgia led to multiple articles that confirmed there was some link between it all. Yeah... I just referenced Dr. Google!?!

While I have not fully figured out what causes it, I believe it has to do with the nervous system. I mean all those nerves in your ears trying to process all that sound... amplify it and amplify an already amplified nervous system. Ouch... or at least that was all I can figure it would be.

However, I cannot tolerate any addition pain so I choose to be slightly deaf. I am missing parts of conversations and possible all conversation if I am in a crowded place or if a person is soft spoken or if I am in an open place or if there are other sounds to process. Basically, I can only hear you if you speak loudly and at my face!




Other than my general lack of listening, I spoke to my ENT about my recent swallowing issues. I know - what else can go wrong with me?!?! Well, apparently I am unable to swallow correctly. Over the past month I have noticed that pills and food were not getting down my throat. Basically, I felt like things were getting stuck.

Not all things, but mostly small things. Rice. Pills. Even fluids. I figured that I was at a doctor's appointment with a ENT, I should use him for both ear & throat... he would know what to do... right?


something's stuck in there...


So after a brief discussion of my symptoms he decided that I needed a Swallow Study and a Nasal Endoscopy. Yeah, more tests!!!

While my Nasal Endoscopy would have to wait a few weeks until my next ENT visit, I was scheduled for a Swallow Study the following week.



 
new week. new test.


When I arrived to check in for the swallow study, I was at the "other" hospital. Most everyone has one of those hospitals. It was not the main hospital, but the smaller less popular hospital. The one that you do not really want to use, but sometimes have too. Well, I was there. And it was what I expected.

The waiting area was older. It showed wear-n-tear. It needed some upgrades... bad. The main desk in front of me was missing a portion of its veneer wood paneling. Sweet!

When my name was finally called I walked to the very last partitioned section. The woman was foreign which meant I was going to have some difficulty understanding her. It had nothing to do with her, but with the fact I do not have my hearing aids in and reading lips of English as Second Language persons was challenging for me. So, I leaned in and did my best not say "excuse me" too many times.

She was efficient and ready to take my payment. Post-cancer seems to be more expensive or as expensive as cancer. Once the money was exchanged she asked me about my cancer. It never ceases to amaze me at what people say. Usually people say the most ridiculous or insensitive things with ignorance. It was not like she was meaning to be rude, but what she said was rude.

Essentially I was told, "well thank goodness it was breast cancer as that does not really kill people any more." That was said by a woman who works in a hospital. Breast cancer leads to metastatic cancer which does kill people. That comment seemed pretty insulting to the many women I know with mets and the women who have died. You work at a hospital!!!

After seriously being confused by her comment I made my way to another waiting room where I was grateful to be seated in an area without any patients or crazy commenting workers. The speech pathologist was ready for me only minutes after I sat down. She was amazing. She was funny. She was knowledgeable. She was making the hospital appear better than it was. She did not make any inappropriate comments.

We made our way back to the exam room and I was surrounded by people. She had a high school student interested in the field shadowing her. There were multiple x-ray technicians and eventually a doctor even showed up. We discussed my many issues and my many treatments. There was a lot to discuss.

Afterwards I stood in front of an x-ray machine and they moved the machine close to my face and chest. I took a few gulps of barium milk. I took a few more gulps. I had a bite of barium applesauce. I had a powdered barium graham cracker. I had a spoonful of barium peanut butter. Sadly, I thought the peanut butter was ice cream, so I took a bite larger than I should have. Nothing like trying to get peanut butter off the roof of your mouth. Sticky!!!




The x-ray machine was filming my every bite and spoonful and gulp. When I was finished I was even allowed to watch my own images. It's so rare to actually get feedback. Normally you have to wait until your next appointment to learn anything. Instead I was watching an awesome black and white film of my face, neck, and body processing food.

I cannot express how cool it was to watch. It was really cool.


example of the image and a look at what swallowing is all about...


Afterwards, she discussed the findings. First off, she said so many things I cannot even begin to remember them all. In fact, she said so many Latin-based or Greek-based or Something-based words it blew my mind. I am only working with a tiny fraction of my brain here!!!

Basically, there were some issues with my upper esophagus. The sphincter in that area was not working as well as it should and she felt it may have been due to hardening from radiation. I was a bit taken back since I did not radiate my neck. I only went over my right chest. They felt that radiation (which can travel) may be the cause. Overall it was a minor issue, but the difficulty swallowing (or dysphagia) was a pain in my neck!

Radiation treatment can affect areas around the treatment area. It is not "common", but it can happen. Do I really have to get basically everything that is not suppose to happen?????

So, the area in my throat has thickened a little. She said when I just can take it anymore I can opt to do a Esophageal Dilation, aka throat stretching. That's essentially as odd as it sounds. It involves an endoscope in down your esophagus where a small balloon is inserted and inflated to stretch your esophagus. So, before I have one of these I will just tolerate my discomfort for a while.

Plus, I still get to see what the Nasal Endoscopy shows in a few weeks...     joy!



In my head...



me resting with Molly (the dog) 


All these appointments were wearing me out. I guess the new year did not bring new breaks, but more like new tests. I still have more to go, but at least the swallow study was painless. It was easy. No needles. No IVs. No prep. It involved eating. The biggest complaint (which it was not even a complaint) could be that the barium in the foods tasted a bit funny. Honestly, I did not really notice.

Even though they found something, it was not something huge. Not to say that my trouble swallowing is easy. It is annoying. I am having to slow down my meals, take smaller bites, and drink water between food. I am having to turn my head from side to side to help alleviate the narrowness. Is it a pain??? Yes. Is it the end of the world??? No. It is just another thing for me to deal with. Tack it on the list.




But so far, I would rate that test as one of the all time bests of my tests.




Episode Reference: Peaches, The Presidents of the United States of America song