Cancerversary – 3 years!

Yes, 3 years ago today, I was diagnosed with Stage 4 ovarian cancer. For you blog followers, yes, it may be stage 3 and it was once called peritoneal, but the official paperwork all says Stage 4 ovarian, so we’ll go with that. As I have the last 2 years, I spent the last week re-reading the blog (106 entries and over 64,000 words). While some of it really makes me sad and depressed, it mostly serves as a reminder of how far I’ve come in those 1096 days, and how blessed I am.

On that day, and on many days since that time, I wasn’t sure I would live 3 years. So it IS a day of celebration and gratitude. I am a survivor of a late stage progressive form of cancer. I still don’t look much at statistics, but I’m betting mine are getting better than they were on day 1. So I WILL celebrate and rejoice and dance every single day. I sometimes forget to do that when I’m down. I forget to be so very grateful for another day. Maybe because I’m not as terrified as I was in the very beginning, but I’m reminded today about gratitude.

But like the last 2 anniversaries, it is also a mixed bag. On the first anniversary I was so full of hope – I had good results with chemotherapy and surgery, and was on what we thought was an “insurance punch” of chemo before being declared cancer free. So I didn’t feel great, but I was so sure I was finished. That “cancer free” period lasted less than 2 months. For year two, I was in a pretty dark hole – depressed and really having trouble adjusting to a new normal. This year, the word that keeps coming up for me is resigned. I’ve always seen that word as so negative – it feels synonymous with giving up. Today I finally decided to consult with Merriam-Webster and resign is defined as “to give oneself over without resistance”. And that really is a pretty good definition of where I am. I wouldn’t say I have given up, but I am certainly resigned to the fact that this gray area I find myself in right now might be my path. I still struggle with how to communicate this piece – perhaps I am just more at peace with where I am right now than I have been before. I have integrated cancer into my life but continue to deny it any control over me. The doctor isn’t sure I have any cancer. Neither am I, but I am pretty confident that IF I do have some cancer cells left behind, they just aren’t doing anything. They have no power. They aren’t dividing and spreading. I don’t feel panicked about them being there. I just feel more at peace. So if that means I’ve accepted cancer as part of my life, then so be it. It doesn’t mean I won’t keep praying for perfectly clear scans and a life completely cancer-free, but I can’t go back to that place where it was super high highs followed by the inevitable “but” that came later. Is that bad? Does that seem like I’ve given up hope? Or is it just okay that I’m resigned to this life, what is in front of me today, instead of really being so focused on where it’s going?

It definitely doesn’t mean I don’t still have really down days, days where I’m really scared, days where I mourn the life I had, the life I thought I was going to have, and those days where I feel really awful physically which impacts my head game too. I am tired of side effects of drugs but I continue to believe it’s important to stay on them anyway because these side effects are better than letting any disease run unchecked. Three years. I’ve never had even 2 months away from treatment. The small breaks I’ve had, like before and after surgery were never much more than a month. Lots of chemotherapy drugs – 18 weeks of Carboplatinum and Taxol, 3 months of Doxil, 9 more weeks of Carboplatinum, 12 months of Topotecan, and now (not chemotherapy) 20 months on Avastin and 8 months on Lynparza. Gladys the Power Port has worked well for me, and far more often than either of us thought when we first got together. I’ve had some really awful days in the last 3 years, but I’ve also had some really awesome ones. And really, doesn’t that describe all of us? So it’s a day at a time. Keep moving forward. Kickin’ cancer’s ass all the way. Fine, you moved in, but we aren’t rolling out a welcome mat for you or allowing you to bring your friends. Sit down, shut up, and get out of my way. I’ve got some living to do.

Blog tip – if you want to read the blog from the beginning or know someone who does, the link is https://annpinyan.wordpress.com/?order=asc

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A grateful heart

This Thanksgiving, more than any of the 51 prior, I am so blessed. Yes that might sound strange given the cancer. But what my illness has done is put a laser focus on how blessed I am. Sure I’m grateful for the “things” that make my life easier. And I’m very grateful for the timing and decision to start our own business. But mostly my blessings are people…. My wife and son and mom, the rest of my amazing family, my doctors and nurses, and the friends that continue to stand by my side. You don’t let a single day go by without reaching out. Every single day someone calls, emails, sends mail, sends some awesome thoughtful gift, visits, brings dinner… Every single day. And I’m reconnecting with friends that I hadn’t talked with in many years. I’ve even made some new friends along the way. Julian said the other day – wow you really have a lot of friends. Yes, I am THAT kind of awesomely blessed. You pray for me, you send love and light, you make me laugh, and you remind me what is really important in life. Thank you seems inadequate. I’m not sure there are words to express the depth of my gratitude. You are my gift in this journey. All of you. You make it so much easier for me. Thank you from the bottom of my heart. I love you.

Really?

Two weeks ago today was my first day home from the hospital. Quick refresher – I went in on Sunday with what we thought was a bowel obstruction. On Tuesday I was diagnosed with Primary Peritoneal Cancer, on Wednesday I had my first chemo treatment and went home that night (after gracefully losing my balance and diving face first into the portable blood pressure cart basket). Then last week I had a horrible experience with my first infusion at the center – couldn’t breathe, blood pressure spike, bright red face… Scary. So maybe this week was “normal”? Nope not so much…

On Saturday I developed a dry cough, had a little fever, and didn’t feel great. On Monday I went for my bloodwork appointment and asked about my cough (still had a small fever and because of other symptoms they did a test for Urinary Tract Infection). They were not so concerned about the cough since I had previously had some fluid on my lungs. They said the nurse could listen on Wednesday during my treatment. That evening the nurse called to confirm that I had a UTI (great!). While on the phone, she heard me cough a few times and didn’t like it. She was concerned about a potential blood clot in my lung. Rather than go to the emergency room she scheduled me for a chest CT scan on Tuesday morning. Tuesday – CT scan at a Northside building, then across the parking lot to my doctors office, and from there a wheelchair ride through an underground tunnel to the oncology ward for admission. Even though 9 times out of 10 it isn’t a clot, I was now in the 10% because I had a small clot. Apparently cancer patients have a higher risk of clots – something about the blood and coagulation changes once you’ve had a tumor. 

They made it sound like I would be there a few days. I had an ultrasound on my legs to check for other clots (most originate in the legs), and they started me on a blood thinner (heparin). I had no clots in my legs and by the next day, my blood had been appropriately thinned to take me out of danger. So I had my chemo treatment (no issues!) and was sent home (yay!). 

However I now have 2 new routines added to my life, neither of them pleasant. Twice a day, I (actually Dara) have to inject myself with a drug to thin my blood. The injections aren’t that big of a deal although it’s a pretty good burn for 5-10 minutes. The truly joyful new part of my life is the support hose to help prevent any clots in my legs. I am to wear them every day but can take them off to sleep (hey thanks). I remember my grandmother had to wear them but I thought they were like tight knee highs. Not these. I can only describe these as individual Spanx for each leg (and really only the women will truly get this). They go from the base of my toes to my hip. It took Dara and I a good 30 minutes to get them on me this morning. They come with a little nylon foot cover you put on just so you can get it over your foot to start. That should have been our first clue. We finally found that me in a chair with my leg up over my head where Dara could really yank it over my foot was the only way to start the process. It was like squeezing a basketball into a child’s sock only harder. You really couldn’t pause anywhere along the way because the bunched up part would cut off the circulation and you couldn’t easily grab it again and start pulling. So it became this bouncing, tugging, and screaming exercise from a variety of different positions. And you know what happens when you’re working really hard at something? You sweat. Yeah that didn’t help – ever try to put on a bathing suit while you’re wet? It’s similar. 

On the plus side, I can easily pretend my legs are this tan and without any trace of cellulite so there’s that. Today I started losing my hair, so it’ll be good to be that bald lady with the super hot legs. 

I am hopeful that I can get into some kind of pattern and have some normal weeks ahead. It was nice that they all remembered me as “that girl who fell into the basket” at Northside but I don’t want to be a frequent patient. 

It’s All About The Love

After first receiving the shocking news that I had some abnormalities in my lower abdomen and would be admitted to Northside Hospital, of course our first calls were to our moms. There’s just something about going to the open arms of your mother and we’re both blessed to have close relationships with ours. I can remember as a child, that skinned knee didn’t really hurt so bad until I saw my mom, then the tears came. It’s no different as an adult, and next to telling my son, telling my mom was the most difficult. My mom is 81 and in good health. As a friend of mine put it, she is truly the Southern Scarlett O’Hara – when times are rough, she becomes this giant pillar of strength and support – and she’s had her share of dramas to handle these last 20 years in particular. She immediately made plans to be at the hospital the next 2 days, dropping everything to come hold my hand. And while I know she has shed many tears for me, when she’s with me, she is a rock of faith and strength. I Am So Blessed.

It was no different with Dara’s mom, Carol. She dropped everything and drove over from Alabama to spend the next week with us. She is a retired nurse and it’s always good to have one of those in the family! She came in, cooked, cleaned, went to the grocery store and supported Dara and I in every way she could. I know having her here made this so much easier for Dara, and her love and support for me is overwhelming. I have the best in-laws. I Am So Blessed.

Our families have been amazing and I feel lifted up and supported by them all every minute of every day… My step-son Michael has been so kind. My aunt Barbara and uncle David, my aunt Strat and my sister Leslie, my cousins Brad, Cliff, and Kevin have all checked in, called, written, or visited and send up prayers for me. The entire McCord clan – fantastic in-laws who also dropped everything to be by our sides, my fabulous sister-in-law Amanda, Dara’s amazing dad, Tom and Dee. Every single one has reached out, texted, emailed, called, and even sent cards through the mail to lift me up in prayer, love, and support. I Am So Blessed.

What has perhaps been the most overwhelming for me has been the outpouring of love and support from my network of friends. Nicole came to the hospital 3 different times and only caught me in the room once, but she kept trying. Sherri was at the hospital a lot and brought me a fan which I really needed with horrible hot flashes. Candace came with her the first day too. Nancy is coming to stay with me next weekend when Dara takes Julian to a tournament – she didn’t hesitate. Allie, Ellen, Kelly, Trisha, Lisa, Jennifer, Kami, Traci – all have come by, many brought food. My bookclub is by my side. My chorus family is so supportive. Voices of Note sent beautiful flowers to the hospital that we are still enjoying. Missy came to the hospital and is consistently checking in. And a special network of survivors has come forward – all offering suggestions, and warm understanding – thank you Darlene for answering my many questions, John, Patti, Paige, and Dee for reaching out. I hesitated to post on Facebook because it is so impersonal, but in the end, I’m so glad that I did. I received hundreds of messages, both through the Facebook page and directly, and still receive them today. From my closest friends to people I haven’t seen since high school. I don’t know how many prayer lists I am on, but I am confident that this much love and the sheer volume and intensity of prayers sets in place a vibration of healing that I feel every single day. I Am So Blessed.

Of course, I can’t talk about the love and support without talking about the 2 most important people in my life, my wife (in 19 states!) and my son, Julian. Dara has always been a rock of support, but these last couple of weeks she has amazed me and made me fall in love all over again. She is so very positive that this is merely a bump in the road of our long lives together and she reminds me of that again and again. The perfect partner in life is one that lifts you up and sees more you in than you can see in yourself sometimes and she is that for me. Thank you for your unwavering love, support, and strength. This isn’t easy and being the nursemaid isn’t the most pleasant of jobs, but you lift me up and ground me. Your love lights my way on days I can’t quite get there. Thank you. Our son Julian (I am mom, Dara is Da – always been his name for her) has been amazing. This is hard for a 15 year old boy, but he asks questions and is plugged in with us. I know he is scared but between his moms and his own friend network I hope he feels supported. He likes to think he’s funnier than me, and right now he probably is, and those laughs light up my days in amazing ways. He’s promised to be my do-rag and hat consultant if I lose my hair. I Am So Blessed.

Truly, I Am So Blessed. I have definitely shed some tears in the last couple of weeks. But 90% of the time, it is because I am so touched by the loving words and actions from my family and friends. When I’m down I read and re-read those messages and feel the love. You can’t check in with me too much. You can’t see me too much. I need you. I thank you.

The MRI Torture Chamber

First, a quick update on how I’m doing… after coming home on Wednesday, I had a couple of good days (thanks to the awesome drugs they pump into me pre-chemo), then had a bad weekend – exhausted after the whole ordeal and having something of a hate hate relationship with food. By Monday I was coming back around and had my 2nd treatment today (the first at the infusion center). Unfortunately I had an adverse reaction to the drug today and scared Dara and the nurses (and myself). They were awesome, stopped the treatment, got me stabilized, then started back at a slower dose so while it took longer, my body handled it better. Home resting now and looking forward to a couple of good days. It will take some time to get into a rhythm I suppose. The good news is that I can actually tell how much the drugs are working – my stomach is dramatically better. So while I have the negative side effects, the positive ones are so motivating… KCA!

Now, on to the MRI Torture Chamber…

I’m a big girl. Medically speaking, I think I’m no longer in the morbidly obese category, but I’m obese. Lovely terms huh? Why not just call them fat, super fat, and super duper fat? In any case, as I think back to my hospital MRI experience, I was reminded of a story from years ago. My family was leaving for a lake vacation and a friend offered me her kayak to take with us. My response? GIRRRLLLL, I can’t get my thang up in your kayak!! It’s exactly the way I felt when I was wheeled into the MRI room that day.

Apparently they brought me down to the MRI offices when they started the person before me because I waited for a good 30 minutes or more in what can best be described as a large storage room. When they finally wheeled me in, my first thought was, yeah, you’re going to need to find me the 2x size of this machine. I was bloated, distended, and had trouble breathing because of the fluid on my lungs (which incidentally was never pneumonia, but is the pressure on my organs pushing fluid into my lungs). Oh yes, and I also struggle with claustrophobia a bit. And, I was scared, no idea what was happening and where this was going… All in all, a perfect formula for an MRI procedure.

First, lie down flat on your back on this tiny piece of metal. Awesome, did I mention that I can’t breathe and my stomach is so tight that being flat on my back is nearly impossible? Now, let’s insert you into this tiny tube (big girl squeezed into tiny tube). And my diminished capacity to breathe created this situation….

Tech: OK, deep breath and hold.

Me: tiny breath, hold 10 seconds, release

Tech: (20 seconds later) Annnd, breathe

Um, yeah I released that breath about 20 seconds ago, but whatever. And they give you “headphones” to block the noise from the machine. Seriously, either those headphones were the discount dollar store brand of headphones or that machine is ridiculously loud, or both. Surely we have the technology to either eliminate that noise or block it out with better headphones – get me some Beats by Dr. Dre up in there next time.

Thankfully I was able to disconnect my brain enough to not have a full out panic attack, but I get how people do. This is a phenomenal technology and it ultimately brought me much better news than we had previously, but wow, that was a brutal experience. When they pulled me out after an HOUR, I was soaked head to toe in panic sweat and immediately asked for Dilaudid when I got back to my room.

Awesome technology, glad there are more evolved versions coming!