The Beginning

Sunday, July 27th, I went to the emergency room for a suspected blocked intestine. By Wednesday, July 30th, I had been diagnosed with Primary Peritoneal Cancer and was receiving my first chemotherapy treatment.

This is my story…

For 2 months I had been struggling with a cough, shortness of breath, and some pain in my stomach. For the most part, the doctors assumed my stomach pain was pulled muscles from my cough. After x-rays showed fluid on my lungs, I was twice diagnosed with pneumonia and went through 2 rounds of antibiotics and steroids. After completing the last round, my wife and I took a vacation to the beach before we were to launch our new business. I was miserable – same symptoms only now my stomach was becoming more and more distended. I looked 8 months pregnant. We came home on Saturday and went to the clinic close by our house on Sunday. They immediately sent us to the ER with an order asking for a CT scan for a potential intestine blockage of some sort. Lung x-ray showed fluid on my lungs, and they did a CT scan. Hours later, the ER doc who had diagnosed pneumonia on one of my previous trips came in and told us the CT scan had some alarming results, a couple of masses in my lower abdomen and some abnormalities. I was to be admitted for further testing, I later found out, to the oncology ward.

Monday – the first visit was a P.A. from the practice to which I was assigned. We were visibly upset given the state of the unknown and she starting talking about the need to stay positive and focus on healing. She also said they were going to do everything they could to keep me alive. WHAT??? Later that morning, the doctor came by and said that typically masses in this area indicate a metastasized cancer so he ordered a biopsy (results would take 2-3 days), and an MRI (more immediate results). The joy of the MRI – more to come in a later installment…  And so we continue to wait.

Tuesday – GOOD NEWS! It is NOT metastasized, I have Primary Peritoneal Cancer – it’s rare (of course) but presents exactly like ovarian cancer and is treated the same. The doctors are confident this is treatable and curable. Today’s procedures would consist of a Thoracentesis (to remove some fluid from my lung) and placement of a central port for delivery of chemotherapy. My treatment would consist of 9 weeks of chemo, surgery, then 18 more weeks of chemo. We’d start the chemo as soon as we had the pathology back from the biopsy.

Wednesday – biopsy results are in and confirm the MRI findings. So hey, as long as you’re here, let’s move forward with chemo today shall we? Later that evening, I lost my balance and took a face dive into the metal basket that is attached to the “vitals pole”. I’m sure that’s not what it’s called, but it’s the portable blood pressure cart. That created the need for yet another procedure, this time a head CT scan before I could be released from the hospital. By 11 that night, I was at home.

4 days, 2 procedures a day, and a diagnosis of cancer. I have cancer.

And so the journey begins. I don’t know where this blog will go, but I have several thoughts about things that happened at the hospital that will take up at least the next few. Thank you for following my journey. Kickin’ Cancer’s Ass. It’s on y’all.

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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!

 

 

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.

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. 

Meet Gladys

Unless you have had cancer and chemotherapy or you’ve been very close to someone that has, you really have a steep learning curve in the early days. Thought I would share some of what I have learned so far.

  • The Power Port – most people know that Chemo drugs are harsh toxic drugs – hence the side effects. What I didn’t know is how far medical science has come in understanding how to administer those drugs. The traditional IV in the arm just doesn’t work for long term chemo – the drugs can damage the veins and create problems in the hands and arms. So I have a power port which is an implanted device in my chest that gives direct access to the larger vein right at the heart. The drugs can’t damage the lining of that vein because it’s bigger and the blood moves so fast through it in the heart area. So the drugs get into the system much faster and with less damage. Pretty cool. Except it creates this alien bump on my chest that creeps me out. I kept calling it an alien. Finally Allie suggested I name it. I’m not much on puns, but Dara is and she and her dad really enjoy a good pun. Anyway, I named it Gladys, because in the end, I’m “glad it’s” there. So, meet Gladys. And as seems fitting for the name, I have long stitches sticking out of both sides of the incision so she appears to have whiskers. Lovely.
  • The good stuff – before every treatment, you get about 30 minutes of pre-drugs, depending on the chemo drug you are getting. For me, I get Taxol every week, and Carboplatin every 3 weeks and depending on which day it is, I get different pre-drugs. It’s always some combination of anti-nausea meds and anti-allergy meds to prevent problems (Benadryl). So you get in a blissy kind of mode right before the drugs are administered. That’s not bad. But the best part is that those stay in your system for a couple of days. So while you might think chemo day is a bad day, it’s really a couple of days after that it hits because all the pre-meds have worn off. We’ll see if the pattern continues this way for me, but so far, days 3 and 4 are the worst. With Wednesday as my drug day, that makes my weekends heavy downtime.
  • Food tastes bad – this one has been tough. I feel full most of the time because of the distended effect from the cancer, but even when I think I’m hungry, the food tastes metallic. Saw a nutritionist at the infusion center who provided us with a lot of tips so again, a lot of good education out there that hopefully will help me make friends with food again. I can’t say I’m not glad about losing some weight but this really wasn’t my idea of how to do that. So far, down 9 lbs in less than a week. Maybe that will be one of the positives that comes from this…
  • Right now I can’t travel at all because of a risk of blood clots and risk of infection. I’m stressed about not being the huggy kissy kind of person I am with everyone, but the risk of infection is so high because of what the chemo drugs do to your immune system. So we have hand sanitizer everywhere. And this can be managed, it’s just different.
  • Every week you have to have labwork BEFORE they will do the infusion. So I have an appointment every Monday to draw blood (which also comes from the port so no more arm needle sticks) and every Wednesday for infusion.
  • I guess every infusion center is different, but I had pictured what you see in movies where it’s a big open room and everyone gets to know each other on your “day”. The Northside center is sort of partitioned off so I don’t know that there will be much in the way of bonding with other patients, but that is yet to be seen. It’s a nice setup though – recliner with a built in table, guest chair (that can use the other recliner table), personal TV, volunteers who bring you snacks, and a super nursing staff. It will be interesting to see if relationships develop with other patients… I have only had 3 out of 27 total treatments (and only 1 of those in the center), so I have so much to learn still. And I like that the bonding is optional – that’s why there are support groups and other avenues.
  • I am a research/google junkie. I am the first one to google a condition whenever a friend or family member is diagnosed. This time, surprisingly, I have managed to completely disconnect from doing any of my own research. I don’t know how long I can hold out. I did decide to pick up the book my Dr. wrote on ovarian cancer. That was a bad idea as it’s filled with not great statistics. While I know it doesn’t matter what those statistics say because I’m ME, it’s hard to ignore them. So, how do you draw the line between being educated on your disease and buying into the bad news you come across in that research? I need some help with this one. I hate being in the dark about the disease, but I hate the bad news worse…
  • While this clearly isn’t the weight loss program I would have selected, it is a nice part of my day to wake up and see the scale moving in the right direction. I had some unexplained weight gain the last month or so that was directly related to the cancer so it’s encouraging that the drugs are working, and the inability or lack of desire to eat much is also helping. So, I’m 3 weeks in and down 25 lbs. At this rate, I am headed for waif status and will need new torture hose before long.

 I have plenty to learn and have my first official appointment with the doctor this week so I hope to become more educated. We’ll see how it goes.

 

My Natural State

This picture is me in my natural state. Those of you who know me well won’t be surprised by that. I had 7 visitors in the hospital last week (plus Dara) and we were so raucous and loud we got in trouble twice (although honestly the nurses loved it). More on that later.

First, my update… It’s Friday and we are celebrating that it was the first normal week. Week 1 – hospital and diagnosis. Week 2 – bad, scary reaction to chemo. Week 3 – UTI, and emergency admission to the hospital for a blood clot in my lung. This week, it was labs, my first dr. appointment, and chemo – no emergencies! That is exciting. My friend Allie shaved my head over the weekend and thankfully I have a normal shaped head with no big lumps or divots. I am still losing the stubble and ready for a smooth head. Currently it is much like a large Velcro patch, sticking to all cloth items and attracting random threads and lint 24 hours a day. It’s quite lovely.

The doctor appointment went well – Dr. Benigno is a fantastic doctor who encourages the most positive outlook. I love his attitude. When I asked him about how best to be educated without getting into a bunch of statistics I’d like to avoid, he said “you meet with me once a month and you bring me every single question or topic you’d like to discuss and I will educate you.” Perfect answer. For those inquiring minds, here are some of the details from the doctor visit… The tumor marker from bloodwork that is related to ovarian cancer is CA 125. Mine was 1368 upon diagnosis. He wants to see it under 20. I thought 1368 sounded high but he said he has seen it in the 10,000 range. It will be interesting to see what it is after a month of chemo – should have that in the next week or so. The types of tumors I have are papillary cirrus – according to him, the type that is most responsive to chemo. Yay! My surgery will be scheduled likely late in October, maybe early November and they will remove whatever tumors are left along with my uterus, tubes, ovaries, appendix, lymph nodes, and omentum (yeah I had to look it up) – so basically everything that is non-essential in the area and could be a risk for recurrence. The most amazing thing is that if the chemo works well, then it’s possible this could all be done robotically, dramatically reducing my hospital stay and recovery period, so that’s our focus now.

Back to my natural state. Clearly, everyone reacts differently to a diagnosis like this. I’m beginning to wonder if most are different from me. I look around the infusion center and most people are very sad. It’s just not how I’m built. I was raised with a strong faith in God in a home that believed in prayer. I firmly believe in the power of prayer and for those that don’t pray, for the healing thoughts and love sent my way. I know it works. I meditate and pray every single day. Add to that a healthy dose of glass-half-full attitude with which I was born, and I am really at peace with where I am right now. People who see me or talk to me on the phone seem surprised by my energy and my zest for life. It’s just me – it’s how I live my life. Listen, I have good days and not so good days, with very few bad days mixed in so far. How is that different from any of you? My bad days are different perhaps, but maybe no worse than yours. Do I have moments of fear? Absolutely. Have I allowed myself to go down the “what if” paths? Sure. But I don’t stay there. I can’t give them power. Some might say I’m in denial. I’m okay with that. I deny all the negative thoughts about this journey. I’m not a statistic so I don’t care what they say. When I am receiving chemo, I used to visualize a small army coming in through Gladys The Power Port to wage war on the cancer cells. Then I decided I didn’t like the violent imagery and instead began to visualize being flooded with pure Love and Light. And where that goes, it drives out all darkness and not-love. Every. Single. Time.

I believe in the divine healing that is taking place in my body. And if down the road something changes in my prognosis, I will still choose to live my life out loud, drinking up every single bit of happiness and joy I can absorb. Because that’s who I am. So, pray me up hard, love me up hard, visit, email, call, and write to tell me you’re thinking of me because that helps me stay in this place of love and healing, but please don’t respond to me like I’m distressed and depressed because I’m dying, because that’s just not where I am with it.

 

Listen to your gut

Quick update: Several of you asked about a bald shot so here it is. Today I went to see my mom and enjoyed flying down the highway in my little convertible with my bald head rocking out to Michelle Malone (one of my favorites). Kickin’ cancer’s ass and having fun whilst doing so. I am finally in what I’ll call the new normal. I’ve strung together a lot of emergency-free days and am feeling really good most of the time. YAY!

Listen to your gut

I lost my dad to Alzheimer’s several years ago, and I have an elderly mother who had back surgery last year. Those of us who are fortune enough to have parents who live into their 80’s and beyond are familiar with doctors and usually become quite comfortable taking a key role in healthcare discussions and decisions. You learn that sometimes you have to push doctors when you know something isn’t right. I was reminded of that in my own journey to this diagnosis.

I first went to a doctor back in the May time-frame because I was having what I thought was a bladder infection. They did a urinalysis and it came back negative so they just said I was having bladder spasms. I also complained of being constipated at the time. In June I started coughing and had some bloating and called to see my doctor. She wasn’t available for several days so I saw a different doctor. I told him of the bladder spasms, cough, pain in my side, and some discomfort and bloating. He pretty much blew me off – my lungs sounded fine and I was probably just constipated from taking iron. He sent me on my way. THAT is where I should have stopped this madness. I should have listened to my gut (no pun intended). I knew something was wrong. At the beginning of July, I called my doctor again who couldn’t see me until after the 4th weekend, so I hung up and went to the clinic down the road (a Piedmont Wellstar clinic). This is the first place that I thought really listened to me. They x-rayed my chest, saw fluid on my lungs and diagnosed me with pneumonia. I see how they got there although we know now that wasn’t the case. I did complain of the bloating that was happening, but they addressed what they saw and sent me on my way.

I finished that 5 day round of antibiotics and steroids, and 2 days later, I was worse, so we took a trip to the emergency room at Northside exactly one week after the trip to the clinic. Again I complained about the bladder, the bloating, and stomach pain I was having, in addition to the cough. I did tell them of the pneumonia diagnosis the week before. They x-rayed my chest, saw fluid, said it was pneumonia and sent me home with a new antibiotic and more steroids. That was July 10th. On July 28th, I was clearly not well with a very distended stomach and pain so we went to the clinic who immediately said, yeah we don’t mess with stomach pain. They sent me to Northside with a note requesting a CT scan for a possible bowel obstruction and they instructed me to complain only of my stomach pain and to REALLY play it up to be seen quickly. I did, and that’s what happened.

Ironically, the doctor who came to tell me the bad news about my CT scan that night was the very doctor who had diagnosed me with pneumonia 2 weeks earlier. She said she still believed I had had pneumonia then, but she’s wrong and she knew it. When I was being wheeled out of the ER on the way to my room, we passed her in the hallway – she didn’t make eye contact. She knew she missed it. I don’t know that 2 weeks would have made any difference in the staging – I seriously doubt it considering my condition at the time. But would it have mattered back in May? Perhaps. This is how ovarian cancer presents – often misdiagnosed as gastrointestinal issues. The fluid in my lungs was a result of all the pressure on my organs and the buildup of cancerous fluid that just backed up into my lungs. It wasn’t pneumonia. Had I pushed more on the bloating and discomfort, would this have been diagnosed sooner? Maybe. Did they ignore me because they saw a fat chic on the table and thought, well she’s fat and she looks fat? I suspect that had something to do with it unfortunately. In the end, it is what it is and I hold no ill will against any of them. I know I am right where I am supposed to be with the doctors who care about me and are working together with my fantastic support network to bring about my perfect healing.

But the message is clear – you know your body, stand firm, and listen to your gut. I know I will.