World Domination, Step 1 | Increase Awareness

October 25, 2017Leave a comment

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?

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…

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

Save the HooHahs!

October 24, 2017October 25, 2017Leave a comment

It began when I was still receiving treatment and my doctor had just switched me to another chemotherapy drug (typically used for breast cancer patients, but also shown to have success with ovarian cancer patients) to hopefully stop the advancement of the peripheral neuropathy I was experiencing on the original (also primarily indicated for breast cancer). I was laying on the couch recovering from the first dose when a commercial came on the television asking if you or a loved one had breast cancer and had received the drug Taxotere… Wait a minute, I thought to myself, I don’t have breast cancer, BUT I am taking Taxotere. What do *I* do if my hair never grows back? Don’t I count?

Then there’s the ever present and ridiculously well funded Race for the Cure and the Avon 39 fundraising walks. I don’t know if it is because October’s Breast Cancer Awareness month falls on the heels of September’s Ovarian Cancer Awareness month so I can see the stark difference between the two or if there is just so much damn pink being thrown at me this month, but I can’t continue to let this go anymore.

First let me say I love The Ellen Show; I watch it routinely and it is programmed into my DVR in case I can’t catch it live. I love Ellen and everything she does to increase kindness in the world. She made me laugh when I thought at times when I thought I might never laugh again. It just happens that while watching today, the show provided references to some of the things I am really beginning to dislike about the month of October.

Today on Ellen, Shutterfly gave $25,000 to a survivor and her family so they could go on a vacation and Michael Strahan danced so Ulta Beauty donated $20,000 to research. It’s been like this all month, every October for the last 4 years. To be fair, I searched for ‘ovarian cancer‘ on her site to make sure I hadn’t missed something similar last month for Ovarian Cancer Awareness Month. Unfortunately there were only results for breast cancer. It isn’t just on Ellen either, yesterday’s audience on Let’s Make a Deal was full of breast cancer survivors and their caregivers. Everyone went home with Dune Jewelry custom Breast Cancer Awareness jewelry. On October 2, The Price is Right had a breast cancer themed episode too. No doubt there are more, but you get the idea.

Ford Motor Company has their Warriors in Pink which has donated $133 million since 1993. Pampered Chef has their Help Whip Cancer products that have contributed $12 million to to aid the American Cancer Society^®’s fight against breast cancer. The Esteé Lauder Companies have Pink Ribbon Products through their Breast Cancer Campaign. The Breast Cancer Campaign has raised more than $70 million to support global research, education and medical services, with more than $56 million funding 225 Breast Cancer Research Foundation® (BCRF) medical research grants worldwide. The list goes on and seems to get longer with every passing year.

How many commercials have you seen about #ovariancancer? How many television shows have you seen raising awareness OR donating thousands of dollars to ovarian cancer research AND thousands in prizes to #ovariancancersurvivors? How many major companies have teal themed products for sale to help fund ovarian cancer research?

My guess is none.

I’m blessed with a 92% chance of living 5+ years after treatment because mine was caught ridiculously early at Stage 1 when my ADHD doctor became concerned about my blood pressure (same stage breast cancer? 98.5%), but ovarian cancer is known as the silent killer and the majority of women aren’t diagnosed until Stage 3. Their chance of survivng 5+ years drops to 39%… Stage 4? 17%(same stage breast cancer? 25%).

This needs to change.

Don’t get me wrong, I love my Pink Sisters and I am grateful for the advancements in treatment that have also been found to be beneficial to ovarian cancer patients, but it’s past time the big movers and shakers with the deep pockets realize that not all women’s cancers are pink. #notallcancerispink

There is not a screening test or vaccine available for ovarian cancer so the best hope we have right now is early detection. The only way to achieve that is to increase awareness and many of my ovarian cancer survivor sisters are too busy fighting to live to push for a change so you’re stuck with me. I’m a loud mouth and can only hope I am up for the task. I’d better be because I really can’t handle constantly hearing “oh yeah, my mom died of ovarian cancer” whenever someone hears my diagnosis.

Don’t worry, I’ve got this

❤ P

Breast Cancer Commercial 2017 Search Results

All Good in the Neighborhood

October 19, 2017October 19, 2017Leave a comment

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

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.

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.

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?

October 18, 2017Leave a comment

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.

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

AMA | What Would I Have Done Differently?

October 11, 2017October 11, 2017Leave a comment

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.

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.

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

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

The Results Are In

October 9, 20172 Comments

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.

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.

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!

#TeamPamda

#FightLikeAGirl #IGotThis #WithALottaHelpFromMyFriends #TealRibbon

Tag: #notallcancerispink