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, December 31, 2014

Good-bye 2014

CV - She ran down the forest slope


Time to celebrate the end of my very long month of December Doctor Madness. It was time for my final appointment of the year!



look who's celebrating with me... 



My final appointment was also my final appointment. It was my last OT visit until I need them again. Basically, I was finished until my arm decided to flare up more than normal or in a way that I could not manage myself. Fingers crossed it won't!!!

While I do not want to need the treatment, I will miss my OT therapist like crazy. She has become such a great friend and supporter. Not only has she provided me with hour long boobie massages (or manual lymphatic massages for those technical people), she has really spent that time encouraging and pushing me onward. I really will miss our hour long visits. I miss her already!!!

While I could have continued on with my OT treatments I needed a financial break. With the new year only a day away, so was my new deductible. Very little makes me worry, but the costs of living... that scares me!!

Knowing that my prescription costs would increase soon, I attempted to get everything refilled before the end of the month. When I picked up one of my prescription... it dawned on me... I realized how much I will be hating January. I am really going to be hating January!!!


Wow! These tiny pills are expensive.


Yep, that is an actual copy of my receipt for one medicine... and only for one month. I will be spending close to $400-$500 next month for just this prescription. Of course, I also have five to six others I will be paying for as well. And as a bonus, one of my other prescription is only slightly less than this one. So, I will be spending almost $900-$1000 a month for prescriptions for the first few months of the year until my deductible or out of pocket has been met. I could really have a nicer house or even a second house with just my prescription bills each month?!?!?


drugs are expensive... even legal ones!!!


I do not think I ever realized the continued costs that are associated with the after affects of cancer. I never imagined that all of my aggressive treatment for aggressive cancer would leave me with chronic medical conditions. Cancer is destructive in so many ways, and continues to cause havoc even after treatment... for some!

Blah. Blah. Boring cancer, fibromyalgia, arthritis costs rant. Blah. Blah.




I could go on forever about costs and cancer and chronic pain and all those daily annoyances. But like anything, lingering on the negative too long is unhealthy. Acknowledging it is healthy. Lingering on it is unhealthy. So, I move on. I move on until I need to rant again... and again...and again..

Finding positives in the midst of negatives is one of my strongest assets! And something I have found very handy in life. Within the chaos of this month, I was still able to visit with my amazing family and celebrate the holiday with them.


sometimes the positives are easy to find...


Not only did we visit and climb trees. Each holiday we draw names for gift giving. I was lucky enough to get a fancy new Lymphediva's sleeve and some make up from my sister-in-law. She really spoiled me this year! Plus, it is about time I started to look alive again!!!


modeling my new sleeve...


My mom even got me some special massacre which is seriously working. I am getting longer eyelashes. I have had such great results with the Grande LashMD products. Not only have my eyelashes started to come back so have my eyebrows. I think I need to actually pluck!?!?!


it is official... some lashes have grown back!


Side note: I do not get any special free products or money from them, I do not even think the company knows I exist. However, I want to share that the product has worked for me... and I am just glad to have some eyelashes again!!

I am ending this year as busy as I started... but at least I am celebrating the new year with some hair...


a lot has changed & it has been busy 
from January to December...

In My Head...


I am so glad that this year is over!


how I felt this year!


It has been a very long year...

A year of radiation. A year of cancer hormone therapy. A year of occupational therapy. A year of new doctor specialists. A year of new diagnoses. A year of fighting to live with joy, happiness, and laughter!!!


“Tomorrow, is the first blank page of a 365 page book. Write a good one.” 
- Brad Paisley


Episode Reference: Dirty Paws, Of Monsters and Men song
- amazing video -
plus, I felt like I was that running beast all year
so long 2014
hoping next year has slightly less running

Tuesday, December 23, 2014

the missing gyno appointment

Episode CIV - don't you forget about me

*** Really should be Episode CII 1/2 ***

I was so busy with my many doctor's I completely forgot to include my doctor's appointment on Monday. I have been so crammed packed with doctor's I forgot I went to the Gyno the day before I went to the Neurologist. I do not even think I know what I have done for the fact that I have done so much.

Who am I? Where I am? When is it? Will my craziness end???

So it seems a few days ago, basically the day before my Neurologist appointment, I spent another day at the doctors...


picture proof I was up and ready...


It was time to go for my annual gyn appointment. Come on... December Doctor Madness would not be complete unless I was poked and prodded in almost every way!

While I like my Gyno, her office is always packed! The wait time there will be one of my longest this month. Eventually I will make my way back... somewhere between the numerous pregnant women about to pop and the young girls seeking birth control. Seriously... how many pregnant women are there in my town?!?!?

I guess I should be happy that there are comfy seating options in the waiting room. There are at least six couches and numerous chairs. You know they are aware of the long waiting problem if they offer you multiple cushy options to sit on. Good setting and two television programming options. At least the one was running a home improvement show. I guess I should just sit back and watch. I might even get to watch it to the end of the show!




After my name was finally called I followed the nurse down the maze-like hallways until I was put in an examination room. They have different arrows all over the floor. I am only aware of what two of the colors mean. One is to direct me to the exam rooms. The other is to direct me out of the office. The place is so confusing they need colored directions on the floor. I think I follow the yellow arrows, or maybe it is the blue... maybe I should just keep up with the nurse!

First the nurse and I chatted and talked about my recent test results and noted that I seemed pretty "normal"... ha... ha... someone called me "normal"!!!

When she left I got completely undressed and hopped up on the table. The paper sheet they gave me was seriously pathetic. It was so thin and sheer that I might as well have just laid up there naked. It was like I had a giant pinkish one-ply napkin thrown across my body. Who makes these things? I mean the material is sheer and tears easily. Plus, the Gyno is only minutes away from examining more of me than I want... why even bother with the sheer napkin that is covering my body?




My Gyno is great. She is funny. She is smart. She is usually fast. (Ironic since the wait to get back to her is exceptionally long.) Today, she was no different. She zoomed through my breast exam. She zoomed through my pap smear. She was in and out and done in record time.

Like the last appointment we briefly talked about my symptoms and general issues. And she reiterated my possible need for a hysterectomy. Since my internal lady parts have been shut down with the Tamoxifen they are basically just useless organs. With no purpose or need, they are just lingering around with the potential to get cancer.




She has a great point. I really don't need them. They are just taking up space in my body. However, I hope I will be able to put off having the surgery until at least mid-to-late next year. I need a financial and physical break from the past two years.

Having the hysterectomy would also free me up to try new hormone therapy medicines. I would not be stuck with just Tamoxifen. I could still take it, but I would open up my selection to the post menopausal aromatase inhibitors (AI) meds. However, all of them stink and have some sort of side effect. None of them are perfect. But... I would have options!!!


In my head...


There is no way I can decide anything now as I have been to so many doctors and still have more to go this month. At least the Gyno is supportive and always tells me she will remove all my baby-making parts at any point. She can have me scheduled a month after I tell her I want one. Instant spaying!!!

I think I spent half the day in her office to only see her for a few minutes. I was there almost the entire time my kids were at school. Wow!!! I am tired, hungry, and my kids are about to walk through the door. I need food and a break... but wait I already went to the Neurologist the following day and posted about it in my blog... so I did not get a break. HA!

Sadly, I was so busy trying to catch up with my blog - I forgot about this appointment. I have probably forgotten so many things this month. Disclaimer Alert: I cannot be held accountable for my incompetence... or at least that is my excuse. My forgetfulness is another reminder of why I called this month December Doctor Madness!!!


It isn’t so astonishing,
the number of things that I can remember,
as the number of things I can remember that aren’t so.
– Mark Twain


Episode Reference: Don't You (forget about me), Simple Minds song

New-rologist... more delusional hope

Episode CIII - I can't control my brain


December Doctor Madness might just be turning it to madness! It was time to meet with the Neurologist and go over my MRI results, right?  Wrong!


 
ready to see what is going on up there...


Seriously, what is up with my luck this month????


First - I had a teenager with me!

I made my way to the Neurologist's office with my teenage son. I had to take him along because he had an orthodontist appointment right after my appointment. There is nothing like having a teenager go along for your first visit to a new doctor. He was thrilled to be there (said with much sarcasm).

It seems waiting in the waiting room took too long. Thankfully his phone distracted him from the wait... at least while I was with him. After I was called back it was only a few minutes before I got a text, "How long?" I was barely in the waiting room. I had just enough time to see the nurse and explained my complicated, long list of ailments. Chill!

The doctor was running about how doctor's run for appointments - late, but not too late. It just seemed long to a 14 year old boy sitting in a waiting room. So, a few minutes later I got, "Have you seen the doctor yet?" Then not moments later, "How long is this going to take?" Seriously, just appreciate you are not at school! He is going to have to work on patience... it is a virtue!!!

Second - The computers were down!

When the Neurologist finally arrived in the room I was ready to hear my MRI results. Instead, I got nothing. I must have some computer jinx going right now because this is the second doctor who's computers are down when I am at their office. Something in my body is taking down medical computers. Seriously, how often does that happen?

It turns out that not only was their system down, they did not even have a copy of the MRI. There was no record of it. I seriously went through all the trouble with the MRI itself and getting this appointment scheduled to find out it was not even sent over for the appointment. What the heck is going on?!?!




After a quick examination that included a bit of poking and walking and talking, he looked over what information he had. Which was not much! In general, the complaints were so many he said it was overwhelming... imagine how I feel!?!?!

Fibromyalgia. It was finally said as a diagnosis. Well, along with Arthritis. I was basically diagnosed with chronic pain (and other symptoms)... yeah! I had heard all these words before and I was already taking Lyrica for these symptoms. So, it was only fitting that it was official.


Learn about Fibromyalgia, click here


The Neuro did not want to up my Lyrica because the increased dosage could cause an increase in problems... like problems I do not want. So, he was going to put me on Cymbalta (see pharmacy comments below for important information about this). He said that the combination of those two medications usually helped many Fibro patients. So I believed there was a new option to treat the pain!

Besides the new med he wanted to do a nerve conduction study. However, my Lymphedema was something that might be a problem. The test should not be done to my arm (arms) due to the increased risk of causing additional damage to my arm. A nerve conduction study involves measuring how well and fast the nerves send electrical signals... so just think needles and electricity... zap!!!

So, even though I was annoyed that I went to the appointment and my MRI was not sent, I felt like maybe there were some new options to help with my pain. And while I spent most of the appointment unfocused because I was watching the time to make sure that I left in time for my son's appointment, I finished at the last scheduled minute I had. However, according to my teenager, I took the longest time ever. But, I left the office feeling hopeful...


Pharmacy Debacle... 

The pharmacy left a computerized message on my phone. Something about a "red flag" on the Cymbalta prescription that the Neuro just prescribed. Since that sounded odd, I called the pharmacist. We briefly spoke and they said the "red flag" was removed and that I could pick it up that evening.




Since I felt bad, I asked my husband to pick it up. Then I wondered about that "red flag". It bothered me. I did not like it. With my concerned researching mode set into action, I began to look for potential drug interaction between Tamoxifen and Cymbalta (DULoxetine) online. I happened to use a site, click here, and there it was...

"Talk to your doctor before using tamoxifen together with DULoxetine. When used regularly or continuously for extended periods, DULoxetine may reduce the effectiveness of tamoxifen in the treatment of breast cancer. Your doctor may be able to suggest alternatives to DULoxetine that do not interfere with tamoxifen therapy."

I was now more concerned. I called my husband and asked him to double check with the pharmacist when he picked up the medicine. A few hours later he walked home with the prescription in hand. I was surprised! I was even more surprised when he explained that the pharmacy did not really try and look up my prescriptions to see if there was any interactions. Say what?

I know my prescriptions are not all at the same location, but they are all paid through the same insurance so they can be seen... plus, a "red flag" did originally show up. I was going to have to call them... argh!!!


heading from crazy into insane...


Since I had a bad feeling about it I called the pharmacy. I told them that I wanted them to check on my drug interactions again before I take the prescription. Yes, the prescription I was holding in my hand. I also told them that I was upset that they did not help my husband or check when he asked... of course, I heard excuses.

Guess what? I am not supposed to take Cymbalta. (Duh!) They told me I have to call my Oncologist and discuss it with them. Seriously... it is 4:40 pm on the last working day before Christmas... argh!

So here's my next 20 minutes...

I Call the Oncologist
I contacted the nurse line and explained the whole situation. Blah. Blah. Blah... sympathy and concern noted, but I only have a few minutes here. All I want to know is if I could or could not take the meds, and if not what could I take? She was worried that the nurses had left, but she would try and find my Onc nurse. I would hopefully hear back from them shortly.

Oncologist Nurse Calls Me
The nurse calls and tells me I am not allowed to take the Cymbalta. Blah. Blah. Blah... crappy and typical not helping me response. They would not offer any other medicine options. I would have to call the Neurologist to get another type of prescription and then call them to see if it was something I could take.... seriously?!?!

I Call the Neurologist
I contact the front desk and she is the only person left in the whole office. Blah. Blah. Blah... you are not going to help me either. Everyone is gone until next Monday!!! She would pass my message on, but offers me no options.

I Feel Defeated... Again...
Now I have to wait almost another week before I can find out what medicine option he offers next, which I then have to check with the Oncologist, which I have to repeat this process until I find something to help me stop hurting. These doctors are starting to get annoying!!!



In my head...


This is a good reminder to keep up with your prescriptions and doctors. I cannot express the need to advocate for your own health. If I had not checked on that medicine I would be taking something that makes my cancer meds ineffective... and that would be bad!

It is a shame that I have to be so constantly pro-active in my own health. I would really like it if things did not always have to go so terribly crazy. Easy button? Maybe that is what I need for Christmas!!!




"I have come to believe that caring for myself is not self indulgent. 
Caring for myself is an act of survival."
- Audre Londe


Episode Reference: I wanna be sedated, the Ramones' song

Friday, December 19, 2014

So Very Frustrated...

Episode CII - never get tired of trying


I might need some type of sedative before the week is over. Seriously... can I get a doctor to prescribe me something... and make it something strong!!!


Monday I had the rushed MRI at the location I did not want, for what? I never got a call about the appointment with the Neurologist. Since they rushed the process you would assume that an appointment would have been made. Right???

Because I had heard nothing I politely called the Cancer Center and asked about the appointment. They assured me they sent the referral over and someone would call me back. So, I waited a few more days....

I politely called again trying to find out if an appointment had been scheduled. Nope. I was told that I should be hearing directly from the Neurologist's office. So again, I waited. Then I called again. Third time is not a charm... it is irritating. I got a very abrupt you can call their office and bug them yourself response. Fine, I will!

So, I called the Neurologist's office to see if I can get an appointment. Guess what? There is no referral there... they have no idea who I am and why I am calling. I knew something was not right. Argh!!!

I immediately called the Cancer Center's office and they tried to assure me that I was wrong. I explained to them that it was over nine days, they just forgot to send the referral, and they made me rush my MRI. Just resend the thing! But what I was really thinking was someone messed up and totally forgot about me!!!!

The referral was properly sent and surprise, surprise, I was called by the next day. After much ado I finally have an appointment next week right before the holidays. I guess I should be glad I am getting in before the end of the year the way I am going!


Yes, I think I might be going crazy here


Not to worry the Cancer Center called me back to reiterate that it was not their fault. A simple sorry would have been enough. Even though they did not send the referral and that it was basically lost in paperwork, it was not their fault. I still have not figured out who's fault it is then, but it really does not matter. I just wanted an appointment. I guess my constant calling that annoyed them was necessary. Ha... being annoying is sometimes good!


Can you tell that I am seriously worn out and in pain?


It has been difficult dealing with my physical limitations. I am sick of feeling bad and my body continually reacting to daily living. Post cancer living is definitely not what I was hoping it would be. Heck... it is down-right bothersome. I am past six month post-treatment... that means I should be feeling better... at least a little better!!! Give a girl a break!!!

We all know that my general mood is upbeat. Generally, I am pooping rainbows and skittles, but I have my moments and my frustrations in this horrible post cancer existence. Seriously, I do not think the doctors or people really understand the continuing effects after cancer treatment. 


I had to go there... 
Pooping rainbows and skittles is positively beneficial to your health!


When the chemo and rads are finished it is assumed that we are ok and finished. Sure, we have gone through the trenches… we have fought… we are tired… and let’s be honest we are not done. There is continued medicines, appointments, scans, blah, blah, blah… it is like the craziness of cancer did not end and I think we all assume it should end. It really should end at some point… right????


It seems like a never ending fight...
my own personal Spy vs Spy


For some people they end treatment and gain some normalcy. For others the post cancer side effects become life long struggles. From hormone therapy to lymphedema to whatever else ails you... life does not always bounce back afterwards. 

Cancer is not over because the “cancer” is gone. I am not even sure it is gone, it could be just undetectable. I think there is a lot of information out there that is just not discussed, read, or explained that helps define surviving cancer and recurrence - click here to learn more.


Will I ever get down from my soap box?


My doctor has never even used any terms that implies my status. I use the term NED (no evidence of disease) based on the fact that my scans are clear. My doctor will not use any specific name and cleverly avoids labeling what I am right now. I don't know what I am?!?!?!

However, with so many people asking I have to say something... or put it in terms people would understand. Being cured is not really an option for my type of cancer - which I understand and I am ok with. Basically, I am not looking to be cured... I just do not want to come back! 

The idea of what cancer is and what it does to patients is all over the place ranging from the media to internet to people who know people who have had cancer. It seems that even with all that knowing, the idea of living post treatments is totally misunderstood.

Even the people I know assume I am finished which means I am cured... I wish. That since I survived I should be planning some grand adventure to climb Mt Everest or something wickedly amazing to celebrate. Instead, I am just trying to make it through the grocery store without having moments of excruciating pain. I think Everest can wait!




Sure I may not be the typical post cancer patient, but I know I am not alone. With the increasing numbers of survivors, I think doctors are being told of complaints they do not know how to treat. It feel as if they just want to treat the cancer and not really deal with the difficulties of surviving with issues cause from treatment.

Plus, we have more survivors now and more people willing to share their experiences… we are realizing that the survivorship does not mean it is over or easy or the cancer damage goes away. Even the statistics are showing an increase in unmet needs, click here to find out more. 


In my head...


Thank goodness for self advocacy and a strong constitution. If I had not kept after the doctors I would probably still be sitting around waiting for an appointment. It never hurts to get involved and speak up for yourself. It is exhausting, frustrating, and enter-any-explicit-word annoying to fight for your health. But it is your health and you are worth fighting for. Time to get enter-any-explicit-word annoying!!!

I have found it is good to know that we are not alone in the post cancer craziness. Thank goodness for the other bloggers and readers who are trying to find their way through this. The other fighters, survivors, family, caregivers, and loving people all finding each other and trying to find solutions. Maybe if we complain enough or join forces to make change then it will happen.



Episode Reference: Louisa May Alcott's Little Women:
“Watch and pray, dear, never get tired of trying, 
and never think it is impossible to conquer your fault.”

Monday, December 15, 2014

Brain MRI... someone thinks something is there???

Episode CI - insane in the brain...


Can nothing ever be super easy or go smoothly? Since the computers where down at my last doctor's appointments I was unable to schedule anything. Not the Onc follow-up, MRI, or Neurologist appointments. The nurses told me the receptionist would call with those. So, I waited and finally got word about my MRI. However, that first call was only the beginning of what was a mess of appointments and phone calls and craziness...


Let the rescheduling begin...


My MRI Scheduling Debacle 2014:

Call 1:  Original call to let me know I have an MRI at the Cancer Center at 11 am on Tues. Yeah, I have a time!

Call 2:  Call to change appointment time because machine needs to be repaired on Tues morning, now appointment on 2 pm on Tues. Ok, I still have decent time!

Call 3:  Call to change MRI to Thurs at 12 pm due to not thinking the repairs will be done on time. Well, at least I am still at the location I want to be!

Call 4:  Missed call, but message left saying that appointment has been changed to Monday at 5:30 pm at Medical Mall. What the heck did they say?!?!?!

Call 5:  I return call asking about why they changed appointment times and location. Turns out they want to rush the MRI so they can have it for Neurologist appointment which has not been scheduled. Since they want it fast they had to move it to the Medical Mall which I despise... because of my last experience there... click here to re-read an earlier blog post about what happened.

I ask them to reschedule for the Cancer Center because I really do not want to go the other location. Then I proceed to do what could be construed as begging. Seems they will check and call me back. What the heck did they say again?!?!?!

Call 6:  They refuse to move MRI time and location. So, MRI at 5:30 pm on Monday at the Medical Mall. Well, crap... yuck!!!

Now that it was settled, I was now ready to hopefully endure a slightly better experience than what happened last year at the same location. However, I was still convinced that they would find little more than a tiny brain in my head. There cannot be a full normal sized brain in my head because I have such little ability to think lately. If there is an average brain someone better tell it to start working!!!


Normal MRI vs My MRI.


However, I knew I had to go. So, after doing my normal Monday routine I drove myself to the Medical Mall for a now extended version December Doctor Madness Month. I was suppose to be finished with medical appointments, but now I had more to go.

Whoever decided that evening MRI scans are a good thing is seriously delusional! The last thing I want to after a long day is go have a loud, confining brain MRI. To top it off MRI scans are my least favorite of the scans I have had. They suck!

So I prepared myself to hopefully try and relax during what was soon to be an hour of torture. I am seriously too tired and sore for this scan... can I postpone it... wait... I have already had it rescheduled too many times!


Picture Proof: 
I am too tired for this.


I signed in. I sat down. I was basically there by myself. I think one other person showed up in the imaging department. Of course, any one with half a brain would not be there in the evening. Therefore, I only have less than half a brain.

When I returned my paperwork I mentioned the late hour and they told me that they scan up until 8 pm. That just sounds way too late. Now my 5:30 appointment was sounding better.

Tonight when I was called back the procedures were completely different. Since it was after hours, the nurses were gone for the day. So, I would not have to endure their vein breaking procedure. Instead the technician would apply the contrast directly into my arm mid-scan. Meaning he would bring me out of the machine at some point before reinserting me for the last part of the scan.

Normally for my breast MRI scan I am put in a slight downward dog position with my boobs flopped out through a giant hole. Truly a scary sight... and one that is kind of funny. This time I was flat on my back, strapped in with an odd face mask. It was like I was confined yet unconfined since I could see out through it.


The brain MRI mask looks awfully familiar to me...


Of course my ears were plugged and covered for safety for the impending loud noises. Plus, the tech let me pick the music which was then set to a blaring volume. I was slowly inserted into the MRI machine... or what feels like a coffin.

Normally I am in a position that makes me basically unaware of how narrow the machine is. This time I can see nothing but the confining space of the tube that I am in. My arms are slightly strapped down and touching the edges of the machine. My head is restricted, but I can still see that only inches in front of me and around me are closed off. Next time someone cover my eyes!


Keep going... you're not all the way in the machine 
until you see nothing but the white of the machine.


I have never had a claustrophobic feeling before, but I did for a minute after I was placed inside the machine. I had to remind myself that there was a large room around that small machine. I had to close my eyes and remind myself to focus on the music because it was going to get all sorts of noisy in just a second.

The reason the MRI scan is so difficult and annoying is primarily due to the noises and the loudness of those noises. Even with the ear plugs, ear phones, and music going the MRI sounds are uniquely torturing. No matter how prepared I am for it, it is always wrenching.


If you are unfamiliar or really interested
click here for the Sounds of an MRI


So after about forty minutes into the scan, I was brought out of the machine and given an injection of contrast. While he did have to search for a vein the tech was far better than my last experience with a nurse who supposedly did IVs for a profession. I was so grateful that I avoided the whole IV experience. Maybe there is some benefits to the late night appointment.

The joy of the moment could not last, because I was shoved back into the machine to finish my last fifteen to twenty minutes of confined loud beeps, bangs, screeches, and other weird noises.


In my head...


The MRI was exactly as it should be... confining, noisy, and long. Seriously, they really need to find a way to get such great images without torturing the patient. The CT scan is super fast and super easy and super quiet. I have decided the MRI is like the CT scans loud obnoxious relative!

The best part of the night was that it was over. I was not bloodied or beaten. I may have a raging headache and be slightly exhausted, but it was over.


“Sometimes I sits and thinks, and sometimes I just sits...” 
- A.A. Milne


Episode Reference: Insane in the Brain, Cyprus Hill song
(there are some bad words,
you have been warned)

Friday, December 12, 2014

another round of doctors..

Episode C - Can't Stop


This week is suppose to be my last week of appointments until the end of the year. So my December Doctor Madness tour was going to include my OT, Oncologist, & Family doctor. My OT appointments are so standard now that it just seems like my normal routine. Instead, I was really focused on my what my doctors would say. Last appointments of the year... or it was supposed to be!!!


First Up... Oncology!


It was time to make my Oncology follow-up. My real irritation is not that I have to go, but that I forgot to have them draw my blood for labs when I was already there last week for my scans. Usually I remember to ask them to do this, but I forgot last week. So, I would endure another needle today. Head thunk!

The blood work section of the center had gone through a transformation since my last visit. They had rearranged the seats... so that no one was facing each other. They had added curtains to try to separate the new seating arrangement... effective, but ineffective as the curtains are not really dividing anything. I could still see everyone when I walked in and it made me feel more confined. I guess there must be some new HIPAA laws.

Then there were a bunch of new faces... new nurses. When my name was called, I was greeted by someone I had never seen. She was less friendly than my previous nurses, but I was going to win her over. I am not sure I did... and I usually do!

Instead, I think my veins annoyed her. Normally the cancer center is the best at finding my very challenging veins... today I was not so lucky. I squeezed and squeezed my hand. She tapped and tapped on my arm. She was still stumped after many arm slaps. Then she got the idea to put the blood pressure cuff on my arm and pumped it up. We waited.. and waited... and waited! I finally had to let her know that my hand was really tingling and I was going even more numb than normal. Finally she went for it and dug around until she finally got inside a vein. Ouch! That is going to leave a mark!!!


It left a mark... for days...


So the blood work took longer than normal. And it really did not matter, because I ended up waiting even longer than normal in the doctor's waiting room. It was extremely slow... unusually slower than normal. And we all know how long doctors can take some days!


Waiting around 
in another waiting room...


Nothing is easy... and today was no exception. It was one of the first times the center had computer problems. The entire system was down. They could not access any of the records - no blood work report and no scan report online. It is a good thing that I do not fret over getting my test results!

My take on follow-up scans and worrying is not like most cancer patients. From what I have seen there is a lot of worry or panic or fear or concern or nervousness. Maybe a bit of everything. I am not worried when I go to the appointment or when I am waiting for the results. It is not that I am unaware something could be wrong, but if it is then it is. Simply put, I have no control over what shows up on those scans so I do not worry about it. Yes, I am weird!

I have been questioned about if I really feel this way or if I am in denial of my fears or depression. The fact is, I am really not worried. I actually try to focus on the fact that scans are good because if something is found then I will know and be able to make choices. Basically, if the scan shows something then I will deal with it and if it shows nothing then yahoo!

If I had to put a feeling towards my outlook on scans, testing, results then it would be hopeful... just hopeful that I am unremarkable and without cancer. The doctor was also calm. He had the nurses go and see if a report had been printed since I had the scan a week ago. Of course it had... and today I was lucky and heard that there was no evidence of disease (NED). Still no sign of cancer! Today I get to say "Yahoo!"


With the knowledge that I was showing no signs of cancer, we then focused our discussion of my continued list of side effects. I had some new ones that emerged since I saw him last. As normal, they do not want to admit any of the problems are due to chemotherapy, radiation, or hormone therapy. Seriously... that just seems crazy to me!

With so many nervous system problems he wants me to have a brain MRI and to see a Neurologist. Another doctor? I am collecting doctors. I thought I was done for the month. Argh! I think he just wants to pass me off to someone else and hope they will shut me up. I will continue to complain about my problems and advocate for my health... if I don't who will?!?!


Since all the computers were still down I left without being able to get my blood work results or schedule my Neurology & Oncology appointments. I figure if something is wrong they would probably call me. So, I was out of there. I was ready to get home because I had spent another long day at the cancer center. And I still have more doctors & a scan to go... I can't stop!!!


Friday... Family Doctor!

I am learning there are all types of doctors. Most doctors just want to deal with issues in their field. The Oncologist only wants to get rid of cancer. Forget whatever comes from those treatments. The Radiation Oncologist only wants to manage the radiated area. Hoping that the Oncologist will deal with whatever comes from those treatments. The ENT - only about my hearing. The Cardiologist - only about my heart. And so on... and so on...


My Family Doctor has really been the only one so far that is attempting to help me. He has always listened to my symptoms wanting to help me figure out ways to actually feel better. Today was no different. He had recently increased my Lyrica and wanted to do it again. However, after learning I was going to get a MRI and see a Neurologist he decided to not alter any medications until after I talk to them.


Down another appointment...


Instead of being able to do anything additional to help the pain I have to wait. He wants to see me back in January so we can regroup and discuss whatever they find out. At least he is listening!

This was suppose to be my last doctor's appointment of the month, but now I was still going to have to get a MRI & Neuro appointment. It seems... I can't stop!!!


In my head...


I guess I should be happy that after multiple months of complaining the Oncologist is at least sending me to a different doctor to hopefully alleviate the problems I am having. I am still surprised at how little accountability is given to cancer treatment for the conditions and problems it leaves you with. While I know I am not necessarily the "norm", I am not the only one who is complaining about the lingering affects of cancer... aftermath of cancer is bigger than they want to believe.

While I am not a doctor, chemo & radiation can cause serious long term issues. There is a lack of acknowledgement in Oncology that symptoms & complaints after treatment were caused by treatment. I have been complaining about this a lot recently... I am obviously and now proven statistically not alone... click here

I could find so many articles and go on as I really feel there needs to be some form of care (medical coordination, doctor specialty, or case manager) for the the post affects of cancer treatment. Instead of having a bunch of doctors pass you between them doing nothing - have a doctor who actually addresses the issues & helps find solutions for what the treatments caused.

Here I go... ranting and raving! I will now put up the soap box and mentally preparing to deal with more doctors and more tests. Like I said... I can't stop!!!


"One of the things I learned the hard way was that it doesn't pay to get discouraged. 
Keeping busy and making optimism a way of life can restore your faith in yourself."
- Lucille Ball


Episode Reference: Can't Stop, Red Hot Chili Peppers song

Thursday, December 4, 2014

Triappointments... CT/OT/BoneScan

Episode XCIX - I've been looking so long at these pictures of you...


My 3rd, 4th, & 5th appointments on the December Doctor Madness tour all happened today and the first one was early. I had to rush everyone in the house to keep on task and to keep moving... we were going to be late!

Run. Run. Run. Hurry. Hurry. Hurry. 


Take the selfie and run...


The first appointment was an abdominal and pelvic CT scan. Since it requires prep I had to get up extra early to start my barium drink. Already not liking this! Then I would need to keep one handy, because I would be drinking the second container while I was driving. Already hoping I do not forget this!


Breakfast & lunch in my case...


So my morning was insane. I needed to keep up with my time frame of drinking the barium. I needed to make sure the kids got up and ready... and on time! I needed to drive my daughter to a friends to take her to school and drive my son to his carpool pick up location. My husband would have to fend for himself. Plus, I must remember to drink the remaining part of the barium in the car. And to not be late for the appointment... hurry?!?!?!?!

Surprisingly I actually made it. And I made it on time. Miracle!

My day was going to be an all day cancer center event. I had a CT scan, OT appointment, and bone scan all lined up. I was going to be have so many pictures made of my body today. Pictures of my innards and some of my bones. It was like Scanfest 2014!


CAT Scan & Bone Scan... I will be here all day...


When I arrived at the center I went straight to the imaging department and waited to be called. I knew what was going to happen since I did this just like a few months. Nice already being experienced!

First they put in an IV to do the contrast for the CT scan, as well as to inject the tracer for the bone scan. Thank goodness the nurses here are so good. I have tricky veins and even though there was some digging around she was quick!

Then I went back to the CT room and laid down on the table. The one really good thing about CT scans are they are fast... really fast. Just a few moments of holding your breath. Just a few times back and forth in the giant doughnut shaped machine. A slight feeling that you have gone to the bathroom on yourself when the contrast is released. Then a few more breath holds and passes... IV is removed. Done!

I was not really done. I was just finished with the CT. My next appointment was down the hall, up the elevator, and down another hall. Conveniently located and strategically planned by me. Since the CT scan was so fast I would be a few minutes early to my OT appointment. Not early enough to eat, but just enough time to sit outside the door and be distracting by my cell phone!


9. occupy boredom in waiting rooms
10. know where to be at any given time


My second appointment of the day was spent getting getting a manual lymph drainage massage ("boobie massage"). It was weird because my normal OT was not there. I had another OT performing the massage. It was strange how different each person's touch and approach can be. While it was similar, the order that she went and the areas that she focused on were not the same. She really focused on my arm and forearm. Even though it was different we still talked, laughed, and hurried because I had an appointment for a bone scan right afterwards.

Run. Run. Run. Hurry. Hurry. Hurry.

I reversed my steps and rushed to the imaging department. My OT appointment ended as my Bone Scan appointment began. I was ready for my final, third, and most time consuming appointment of the day. Scan on this!

The bone scan requires me to be still. A feat in and of itself. It also requires me to be still while laying on a very flat metal table... my back!!! Seriously, even with that tiny little knee pillow you give me... ouch! Can they not afford to make more comfortable tables for these tests???

My arms were placed in a circular strap to stay in place. My body was still. Now the machine moved me into the starting position and began to find its way as close to me as possible. Each section, starting with my face, is scanned for about 15 minutes. It is really close to your face... inches away. As it moves you further out, it stays as close to you as possible. And it is really close!

I was able to see some of my scan on the screen above me. It was really cool... there were all my bones... all shiny and white on the black background. Of course, I have no idea what any of it means... but it looks cool!

The scan technician made sure there are no fuzzy bones. I did not have any because I did not move. I was clear to leave. I was really done! I had spent all morning and now into the afternoon at the cancer center and all I could think about was getting home to eat something. It was a long, exhausting day... but my pictures for the next months to year were complete!


Seriously?!?!


Something would have to go weird... it was too easy today. After I got home, ate, and picked up the kids I looked at my arm... red! The paperwork they gave me says to call the doctor if there is a red spot, but I am just too tired to deal with it. Plus, I think some contrast must have gotten under my skin near the IV area. I will call tomorrow if it is still red... argh!!!


In my head...


Just as I suspected, the redness went away by the next day. However, my body was sore and it continued into the next day. Each of those things: CT, OT, Bone Scan are simple and easy... doing them in marathon form was exhausting! However, I was glad to get them all done and I got them in before the end of the year. Less expensive for me!!!

At least my first week of appointments in December was over. While I still have other things to do I am done with the medical... until Tuesday...


"It is difficult to see the picture when you are inside the frame."
- Eugene Kleiner


Episode Reference: Picture of You, The Cure song