Haiku | On Survivor Status


Today was pretty frustrating and I have so much I need to get out of my head and into words, but I don’t even know where to start. The basic gist of it all is how I’m really aggravated because I now know why I have been feeling the way I have and I know what I *could* be doing to remedy the situation, BUT support is not readily available to me because I don’t have the well known and incredibly supported cancer. I feel like I’m not one of the cool kids because my cancer isn’t pink.

Seriously.

Doctor overseeing survivorship, that I was referred to by my doctor, actually said to me that she usually ONLY sees breast cancer patients but was willing to make an exception in my case. WTAF? Her team even put off setting up an appointment for me because they want to confer both doctors since I don’t have breast cancer. Even then, there isn’t an opening until December and the workshops are all full. I looked into support groups too only to learn that once again there was nothing for ovarian cancer but multiple groups for breast cancer.

I suppose you could argue how a breast cancer survivor has scars, lost her feeling of sexuality and femininity, and is grieving those losses. Oh wait, I do too! I get it, really I do. Breasts are a visible sign of femininity and who doesn’t love breasts, while ovaries, fallopian tubes, uterus, and cervix are all tucked neatly away, for good reason as they are NOT attractive. Those ugly reproductive organs are also responsible for the much loathed PMS. courage doesn_t always roar. (2)

Forget it. I. Can’t. Even. Right now. All through treatment I’ve been flummoxed by how one cancer could have so much more support than another, but at least then I was benefiting from the advances made in breast cancer research…we share common drugs. Now, on the other hand, I won’t benefit unless folks decide to make an exception and allow me into a sisterhood cloaked in girly, ultra feminine pink.

Teal always looked better on me anyway.

/rant

I will try again tomorrow.

AMA | What Would I Have Done Differently?

Knowing your symptoms that you had for so long, what would you have done differently knowing what you know now?

… Linda Matthews

Considering that it took the only doctor I had at the time, my psychiatrist who manages my ADHD medications, had to refuse to refill my meds until I identified a primary care physician and have my blood pressure checked, I think it’s safe to say there are several things I would have done differently knowing what I know now.

KnowledgeIsPower

I think the main thing I should have done was recognize that, like in so many other areas of my life, when it comes to my health knowledge is power. Believe it or not, I had to have my doctor point this out to me after a CT scan halfway through my chemotherapy revealed that I had nodules on my thyroid, a nodule on my right lung, multiple lymph nodes had developed in my abdomen, and my gallbladder was full to the neck with gallstones.

Needless to say, I freaked out.

In going over these findings with Dr. G pointed out that pretty much everyone has these types of things happening in their body at any given time, but don’t have the privilege of knowing until there was an issue. That I was able to know this additional information about myself was a gift giving us the opportunity to establish baselines and know what things I may need to keep an eye on going forward.

As it turns out, I was able to utilize some of this extra knowledge this past July. I woke up at the crack of dawn knowing that something horrible was happening in the upper right quadrant of my abdomen. Ah yes, I thought, my gallbladder is full to the neck with gallstones! A quick Google later and the symptoms I was experiencing tracked with a gallbladder attack. Mind you, I’m still a bit of a wingnut and contacted first a friend, then the gyn-oncology department at UNC Hospitals, and finally my nurse neighbor before I finally accepted that the only way I was going to rid myself of the pain was a trip to the ER. However, once there it did help things along to be able to tell the doctor that I had two scans on file showing stones in my gallbladder, even though he said it took the fun out of his investigation.

Now, the funny thing I learned I should have done differently? Not view medical tests the same way I do skills tests. I didn’t want to go see primary care physician about the concerns my psychiatrist had about my blood pressure because I was afraid I’d fail the tests. Which is lame because, like noted above, you can’t fail in this situation as it is just more knowledge and knowledge is power.BeSilent_bigger

Additional changes include:

  • Not writing off the symptoms I was having as being part of the aging process. Weird rapid weight gain, fatigue, blood pressure issues, lower back pain, indigestion, and heartburn individually *maybe* could have been written off as a fact of life, but combined the way they were and all arriving at the same time should have raised a flag or too. Combined they were symptoms of the mass growing in my abdomen displacing my organs and putting pressure on my arteries.
  • Routine screenings and physicals with primary care physician
  • Be quiet; hear the whisper

OV_Know_the_Facts_Zoom1

Thank you for the question, Linda! Does anyone else have a question for me?

Let’s All Go For a Walk

Not all cancer is PINK.

Ovarian cancer, for example, is TEAL, pancreatic is PURPLE and multiple myeloma is BURGUNDY. I know these colors because people in my life have been touched by these and they often don’t receive the same bandwidth (or support) that breast cancer does. I guess that is why I like Relay For Life; they walk in support of all cancer survivors AND honor the caregivers who help us get through some of the toughest days of our lives.

https://charityuknews.wordpress.com/2013/08/27/cancer-awareness-ribbon-colours/

Sprite

Over the years I have walked in several breast cancer walks and was trying to figure out what I would do instead now that I’m an ovarian cancer survivor when I met Jennifer, a multiple myeloma survivor, at her Sparkles N Sprites craft booth at NC ComicCon. She invited me to join her and her friend, Veronica, at an upcoming Relay For Life event happening near me in Cary. She felt the experience would be good for me as I was just beginning to rebuild my energy after finishing up chemo a couple months before. Remembering how it had been important to Amanda and Kelli, it didn’t take much to convince me to join after that.

We got a lot out of that morning of walking and determined we would continue to participate in the future. Overachiever that I am, I piped up that we should start a team and the wiser among us agreed that if I started it then they’d likely join me 😉https://secure.acsevents.org/site/SPageServer/;jsessionid=00000000.app306b?pagename=relay_learn&NONCE_TOKEN=601AE4434EBDC031072EF1FE3FA9B897

So here we are 6 months later. I am approaching my first year post-chemo and the prospect of finally saying goodbye to my port after I pass my first year anniversary. How to mark these momentous occasions? Then I received a challenge email from Relay For Life to attempt to reach a fundraising goal of $150 by the end of October and it all came back to me. I’m starting a team! I’m raising funds for cancer research! I’m going to spend time with friends walking around a track! This is how I can make a difference for others who might have to go through what I did! Oh goodness, what have I gotten myself into? I need your help, please!

Now, here’s where YOU come in…I’ve CREATED the team, but I need you to BE the team since we all know there is no ‘I’ in ‘TEAM’.

WHAT IS RELAY FOR LIFE?

Relay is a team fundraising event where team members take turns walking around a track or designated path. Each event is 6-24 hours in length and each team is asked to have a member on the track at all times to signify that cancer never sleeps. Cancer patients don’t stop because they’re tired, and for one night, neither do we.

Each team sets up a themed campsite at the event and continues their fundraising efforts by collecting donations for food, goods, games, and activities. This money will count towards their overall team fundraising goal.

I’ve signed TeamPamda up for the event at NCSU on Friday, April 6, 2018 (I think) and would love for you to join me. This will be my first time as captain of a team like this so we’ll be learning the ropes together. Right now I’m looking for help to get this all going, so even if you don’t think you can be there the day of the walk there are other ways you can get involved and help us reach our fundraising goal.

There will be more posts as I receive additional information, but you can visit the Relay For Life site (home page) to register and join my team. The earlier you register, the more time you have to raise funds and earn fabulous swag in the process.

Thank you for your support!

The Results Are In

Overall everything went great today. Dr. Gehrig was pleased with how everything looked, I was able to visit with some much beloved peeps, and CA-125 value just came back well below the normal limit.

09Oct17CA125

So, YAY!, right?

Then why did I burst into tears when my nurse, Olivia, asked how I was doing?

GREAT QUESTION! I was equally curious as to what that was all about.

On the surface, it seems that, despite my efforts, my weight continues to rise a little more each time I weigh in. Now there are plenty of reasons it could appear that way and sweet nurse and wonderful brother were right there with all of them to help me regain myself. Still, it is extremely frustrating especially after all of the sacrifices I’ve been making to help things move in the right direction. They are setting me up with a nutritionist to make sure I am eating what I should and not replacing those former comfort foods with even worse, but cleverly disguised comfort foods… THAT is quite possible knowing me like I do.

But Dr. Gehrig dug even deeper and determined that I’ve reached another stage in my treatment and recovery… SURVIVORSHIP.

k-91-chim-5782_1

The more we talked the more I realized that this is the reason for the MEH feeling I’ve been experiencing lately. Well, this and a touch of the Pink Stink as Dr Gehrig termed it. Or, as I describe it, the desire to scream every time I see pink or hear how more needs to be done to bring awareness to breast cancer. #NotAllCancerIsPink

SURVIVORSHIP

From the outside looking in, most people think coming to the end of treatment should be a time of joy and ease. However for many survivors when the routine of treatment ends it can be a time of mixed emotions – a time for celebration, yet also a time of more challenges. Many survivors often liken the transition to being cast adrift – they’re not sure what comes next and they feel lost about moving forward.

Thankfully, UNC Lineberger Comprehensive Cancer Center is well equipped to help me, at least with the survivorship bit, I think I’m on my own to deal with the pink stink issue. They offer survivorship care plans, survivorship clinic visits, and cancer transitions classes/workshops. I was sent home with all the information I need to get rolling down the road to *really* surviving 😉

So, yes. YAY!

Check Up Time | 9 Months Post-Chemo

Tomorrow morning I head to UNC Women’s Hospital in Chapel Hill. I’ll park in the Dogwood Deck, hopefully on the second floor near the sky walk, and make my quarterly pilgrimage to Clinic D. I’ll check-in at the front desk and make small talk with the woman who has greeted me countless times previously before taking a seat with the other women at various stages of their adventure with reproductive cancers.

The first nurse of the day will invite me back to take my vitals and inquire as to whether I’m in any pain. Hopefully my weight will be down and everything else will check out as usual. I’ll let her know that my big toe hurts while giggling internally over the inside joke. I wouldn’t have reported something so seemingly inconsequential in the past. However, now I report everything because I’m afraid if I don’t I might miss something that will prove to be an early warning sign of something less trivial.

Up next is a quick visit with Dr. Gehrig. We will cover how the last 3 months have gone for me, cover any questions I may have, go over any instructions/suggestions she may have, and after a lightning fast internal exam she will wish me well until our next appointment in January when we will hit the one year post-chemo anniversary.

My last stop of the morning will be to visit my favorite ladies in the Infusion Room. While we discuss what I have been up to since I last saw them and I hear updates on progress of cute babies, they will take a blood sample for my CA-125 test and flush my port to keep it working as intended.

One last stop at the front desk to set up my next appointment and maybe a quick pop into the hospital Starbucks for a celebratory beverage and then I’ll be making my way back across the sky walk to find the GR(APE) to make my way back home.

None of these steps takes very long, perhaps 15 minutes max, but they are so emotionally charged that I often find myself wiped out when I’m finally done. It may also be because I will still be waiting on the results of the main reason I routinely make this trek. If all goes well, by late tomorrow afternoon I will hear back from Dr Gehrig that my CA-125 has continued to stay within the normal range.  Then you can cue the sigh I didn’t realize I had been holding since probably my last check up.

AMA | My Experience With Ovarian Cancer So Far

I’m traveling this week with family. When I told my family about my random encounter with my new found friend, George, at my neighborhood Target store, mom came to the same conclusion George did… recording my story would be easier for than trying to write it all up. After all, I’ve been telling it to everyone this past year who would stand still long enough for it to gush out of me.

What better time to do it than during Ovarian Cancer Awareness Month and the one year anniversary of my diagnosis?

Here’s my request to you, since I like the exchange I experience when telling my story face to face…

If you could ask me anything about ovarian cancer, anything at all, what would you ask?

No question is too hard; no topic is off limits. I’m no expert, but I will answer every question to the best of my ability. If I can’t, I will get the answer for you somehow, most likely via the team of medical professionals who helped me get through this first year.

Let’s hear it, #TeamPamda, what do you want to hear about most?

The Great Hair Reboot of 2017

Many nights I dream my hair has grown back. It doesn’t follow the normal route and grow back slowly over time. Instead it springs up overnight unexpectedly shocking me with its appearance. Last night it sprouted overnight into long curly locks that I tried taming with a curling iron because it stood straight up on my head… poor Scott is going to have his hands full if any of my dreams are premonitions 😉
What do YOU think my hair will look like when it finally reappears?

Ring My Bell! | Treatment 6 of 6

“Ring this bell / Three times well, / It’s toll to clearly say / My treatment’s done, / This course is run, / And I’m on my way.” 

Marking a life event date in pictures until I have the words.

Checking in at Clinic D | Gynecologic Oncology

Paper Cranes

Sleepy Pamda

Zen Garden Bull

Last bag hanging

Ring This Bell

Resume Worthy?

Some Beauty at Fresh Market


Peach Fuzz


Shout Out To Roberta