World Domination, Step 1 | Increase Awareness

While talking with one of my doctors today, I mentioned that I might reduce posts to only once a week because it doesn’t look like my posts are being read by many folks. Then I rattled off the concerns I have: are my posts too long? are they poorly written? am I posting to frequently? After all, I’ve had people complain about my Facebook posts in the past, saying they muted me because I flooded their feed. Is that what’s happening here? Should I focus on one topic a week and do it up right? I mean, if my friends don’t even want to read my blog, why would a complete stranger? How will I ever effect any change if I’m just shouting into the void?

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After a beat, he asked me if writing these posts was helping me?

Certainly, getting these thoughts out of my head onto the page has been a huge help.

Does writing as often as you do work for you?

At least for right now it does, there’s a lot of thoughts rolling around in my head.

I certainly don’t intend to discount the need for increased research, but isn’t the biggest issue a lack of awareness? There are people out there that don’t even know ovarian cancer is a thing and early detection is key…

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Yes, and I’ve heard of friends who were aware having to beg their doctor to investigate their symptoms because they can so easily be written off as symptoms of aging.

Right. In my opinion, if your posts save just one woman that would be huge.

So, I’m going to keep going. I’m still looking for my voice and trying to figure out what works for me, but if you hang in there with me I promise I’ll get the hang of this eventually. And maybe, just maybe, these posts will help someone else besides just me.

If, like my sister, you think this blog might help someone who loves a survivor understand what they are going through and you know someone who might benefit, would you please consider sharing with them? I’d be ever so grateful!


Don’t worry, I’ve got this!

❤ P

TalkAboutIt_Leaderboard

 

On Progress

I’m making progress and while some days are better than others it’s still progress. Over time, I’ve learned that even at a slow pace it still counts.

-some quit due to slow progress never grasping the fact that slow progress is progress-

Next week I’m taking next step towards achieving a professional goal I’ve been working on since I completed treatment in January. Much of my attention is focused on preparing for this trip, but as I do I can’t help but think about how far I have come in the last 9 months. It often seemed to be going so slow that I felt I was getting nowhere, but now I can see that was not the case. I’m still mulling over how to put all of my feelings on the matter in to words. So much is going on right now though that I think I’m going to need some more time.

I can’t say too much about my trip other than to say I’ll be venturing back in to familiar territory that post-treatment feels outside of my current comfort zone. For someone who used to travel all the time, after having been in the protective bubble of treatment and recovery, it now feels like a ‘new’ experience that is unfamiliar and weird. As I continue to move forward, it is coming back to me and I’m excited to get under way.


no worries, I got this

❤ P

On Resilience

resilience (1)

Pretty much common sense really, yet I know I am not alone in needing the reminder that in order to not only survive but thrive one needs to regularly rest and recharge. I have a tendency to push myself too far. While I have made serious improvement since a car accident in 2011 forced me to slow down or else I fell down, on occasion I can still overdo it. I got fairly close to that line yesterday as pointed out to me by my friend, Lindsey, when I posted a picture of her rock star daughter Avalon with caption saying “Foster visited Foster”. Those are the kind of goofs I make when brain power is starting to bottom out, so I shouldn’t have been surprised this morning when I rolled over and realized it was 1:30 PM. Thankfully the four-legged crew was kind enough to let me sleep. Fergus even took some convincing to wake up himself. It isn’t like I slept a ridiculously long time though. I’ve been dealing with some insomnia issues lately which combined with the long day yesterday resulted in some difficulty waking up.

On the Bright Side |  it was that insomnia that led to me finding the most inexplicable Facebook live video of a woman in Alabama hosting a “pearl party” and salty as hell at her videos jump in viewership from 100 to 1000s; many of whom, like me, were left clueless as to what exactly it was they were watching.

I felt some guilt for sleeping so late, but after checking out my sleep history on Fitbit I realized I needed that sleep pretty badly. It’s been a pretty quiet day here full of knitting, dog walking, and some work related tasks. A nice lead in to the weekend.

positives

Today’s Highlight | Our neighborhood rock star, Avalon, came home from the hospital this evening! I am seriously impressed by the progress she has made since her surgery on Monday. I know her cats, Andy and Jacks, are happy to have her home and the neighborhood kids have probably already started ringing the doorbell. She still has quite the road ahead of her, but I’m looking forward to some crafting time with her while she recuperates.

It’s no big secret that I enjoy knitting, buy what kinds of crafting do you enjoy when you are couch bound recovering?


no worries, I got this

❤ P

 

All Good in the Neighborhood

Long and busy day has worn me out so this probably will be short and sweet.

ShoeQueen

My gyn-oncologist has the raddest shoes

Everything checked out fine at my doctor appointment this morning. I am super grateful for my wonderful gyn-oncologist. She explained that with my CA-125 results a doubling of the value in a 3 month span would be a cause for concern, but the small increases I noted were normal. She reassured me that it was her job to CARE for me, not PROTECT me, so I should never worry that she has not shared everything she knows with me.

Reiterating that if she didn’t know something she would tell me and that when it came to difficult conversations she would deliver the news as empathetically as she could, but that she would tell me everything. I cannot emphasize enough what that meant to me.

She also pointed out, without making me feel like a complete goober, that I had an ultrasound when my gallbladder came out in July that was noted as being UNREMARKABLE. Something that would totally have eased my mind if I had taken a moment to think it through.  I left the office with a script for antibiotics to treat my UTI, lots of compliments on my knitting, and some new shoe goals. All in all a successful start to the day.

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I stopped by Salontology this afternoon to see my Hottie Scottie to catch up with him and get my hairs shaped up a bit. He has made ‘the great hair reboot of 2017’ so much more bearable. A clip here and another there and he’s made each phase of growth look like it was a choice and not just something I had to deal with after treatment.

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My last stop of the day was to see a pint-sized pal at Duke Children’s Hospital who had surgery to address a curvature in her spine on Monday. People have called me a warrior, but I have nothing on her! She walked around her unit yesterday and two flights of stairs today. She’s had issues with pain management, but she’s handling it like a champ. I’m super proud of how well that little rock star is doing. While I was there tonight she finally started to get her appetite back, enjoyed opening some presents, and was visited by Foster the Therapy Dog. When I left she was settled among her pillows and stuffed animals watching The Lion King 😉

What a day. I think I’ll be napping it up tomorrow!


no worries, I got this.

❤ P

 

How Will Numbers Be In The Future?

I joined a Facebook group for ovarian cancer survivors so I could read about the experiences of others to help put mine into some context. One of the first things I saw was a post sharing a guide to CA-125 values prepared by the Foundation for Women’s Cancers . Another timely find as after I received my results from my 9 month post-chemo follow up appointment I noted that since I completed my treatment my CA-125 value has been creeping up. It is still well below the 34.9 cap on the “normal” range and my doctor seems pleased with how they are doing, but it still bothers me.

She stood in the storm

I can’t say that I found great comfort in what I read since it says that a increase in number over time is often an indicator of a recurrence. At the same time, there is still a great deal to learn about this test result and the guide does note that a gyn-oncologist is most skilled at interpreting the results for individual patients.

This result is just one more tool in the tool box so I shouldn’t give it more power than it deserves. I’ve noted a trend, but all that calls for is continued attention to future results and not a call to arms now. I guess I’m still recovering from being told that they don’t normally become concerned about an elevated CA-125 value in a “woman my age” until it hits 200 (when mine was 165). However, if I’m reading this guide properly it seems that it is not really considered an accurate screening test until it is determined that it is accurate for the individual with the value (clear as mud, yes?)…

Gratefully, it isn’t my job to obsess over these numbers and I have great faith in the abilities of the person who does have that job. Speaking of which, I see her tomorrow to determine what’s going on in my urinary tract so I can ask her then if I’m just being my hyper vigilant self or if there is any cause for concern.

Has your CA-125 value been a good indicator for you with regards to your diagnosis, treatment, and follow up or not? Let me know in the comments below.


No worries, I got this

❤ P

Fear is the Mind Killer

While I wait to hear back about survivorship support AND wait to see doctor about my current health issues, I’ve been exercising my Google Fu skills to find some help online. One such resource I found was a PDF booklet titled creatively enough, “Facing Forward: Life After Cancer Treatment” put together by the National Cancer Institute.

I’m finding it to contain some useful information. They suggest you share the booklet with friends and family to help them understand what you are going through, which I have now done. You can either read it straight through or read a specific section as needed. I skimmed the whole booklet to get a sense of the contents and now I’m taking on sections that resonate with me the most at any given time.

On the heels of yesterday’s semi-controlled vent regarding fears of my cancer coming back, I thought the section on coping skills for that very thing might be a good place to begin.

coping withfears of

  • Be Informed – this is currently causing me more agita than it is helping, so moving on…
  • Express Feelings – the blog is helping me to better get out the thoughts rolling around in my head
  • Seek the Positive – I’m considering adding a section to my posts to highlight the good I see happening around me
  • Don’t Blame Yourself – my initial thought was that this doesn’t really apply to me and then a tiny voice said, “yes, it does” so we’ll just consider this a work in progress
  • Be Active – Fergus and Fitbit are helping me with this one. I increased my step goal another 1K per day this week to 7K
  • Relax – Knitting.
  • Control What You Can – as a recovering control freak, this one is a bit difficult for me, but I’m working on it 🙂

How have you dealt with your fears? Let me know in the comments. We’re all in this together after all.


Don’t worry, I got this.

❤ P

Life With Cancer | It’s Probably Nothing, But…

There’s an ever so slight chance it’s something.

After my 10% chance it’s something became 100% it’s ovarian cancer, I haven’t had much trust in the simple reassurances you often hear when facing an unknown. One of the questions that comes along with surviving cancer is, “will my cancer come back?” Most of the time, that question hides way in the deep of my subconsciousness and only surfaces right before one of my quarterly follow-up visits.

Until this weekend, that is.

Based on my symptoms I most likely have a simple UTI or, at worst, a kidney stone. However, because I’m an ovarian cancer survivor there’s the third option of a recurrence in the form of bladder cancer. I haven’t really had a UTI since my mom figured out when I was 5 or so that Mr Bubble and I didn’t really get along too well. There was a suspected instance during my chemo treatments, but because I was neutropenic and popped a fever, it was addressed almost immediately in the ER with some heavy duty broad spectrum IV antibiotics.

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That isn’t the case this time. This time there is no fever and no quick turnaround in the ER, instead there is blood and roughly 3 days of calls to figure out what needs to be done. As long as I can continue to weather the crazy urgency to pee countless times throughout the day and night, I have an appointment to be seen by my gyn-oncologist Thursday afternoon. If I break before then, I’m to call back so they can get me seen by one of the Fellows. I don’t see me breaking anytime soon as I’m still agitated that Fellow blew me off on Saturday night and I won’t feel at peace until I hear from Dr. Gehrig.

Pretty much everyone has assured me that it’s probably nothing and for the most part I agree with them, but I still can’t help but worry that maybe, just maybe, it IS something. Only 9 months post-chemo and I’m being introduced to the thoughts I will have every time something is not quite right in my body… “is this it? has my cancer come back?”

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

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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!