Oh, the Pain

5/30 – 6/3/13 Thursday-Tuesday: WHY WAS I SENT HOME????

The next six days were spent mostly in a haze of pain, trying to stay as still as possible and occasionally having to shuffle off to the bathroom, one inch at a time, bent over like a soldier holding his guts in on the battlefield. The ER doctors said I would be in pain, but did they not realize how much pain that would be? Is my 8 only a 4 in the ER?

I did want to let my family doctor, Dr F, know what had happened in the ER, so I decided to swallow my fear of being THAT patient and call him on his cell phone. I have had the same family doctor for 22 years, since my first year of teaching. He knows everything about me and is always accessible. I saved his phone number the last time he called to check up on me, thinking I might need it one day. That day had arrived.

Dr F was happy to hear from me and assured me he would get copies of the tests that were run in the ER and let me know the results. I was especially anxious to know if the CA-125 tumor marker test showed any elevated numbers, which might be indicative of cancer.

He strongly recommended that instead of going to the hospital clinic I see a Gynecologic Oncologist he had sent patients to in the past at UT Southwestern Medical Center. He said if there was any chance this could turn out to be cancer he wanted me to have someone doing surgery who specializes in this specific area. He promised he would make an appointment and get back to me.

He asked if I was in pain and if I was eating. I had to admit, the pain was so strong it completely took away my appetite. When I told him the ER had prescribed ibuprofen he said, “that wasn’t very nice of them,” and called in a prescription for Hydrocodone.

The Hydrocodone was like manna from heaven. It enabled me to eat a little soup and crackers, and I could walk a little straighter. It also knocked me out, and the rest of the day was a mixture of falling asleep, trying to get comfortable on the couch, trying to focus on the words on the page in the book I was reading, and worrying about the future.

Dr F read the results from the CA-125 tumor marker test. When I asked about it he said he didn’t have much faith in the test, that it’s really only effective during chemo, for instance, when the numbers can be compared each time it’s given to see if cancer is more or less prevalent during treatment and after a specific amount of time. His answer signaled to me that the numbers were elevated and he didn’t want to alarm me. Even if he didn’t have much faith in the numbers, if they were low he would have told me. I didn’t let it bother me, but it was a red flag.

He was able to contact the new doctor, Dr K, and it was a testament to her dedication that she left surgery to take his second call after she heard my symptoms. She said she would be happy to see me in her office on Tuesday, the earliest day she could see me, to discuss what was going on and to schedule surgery, but she also stressed that if the pain became unbearable I should check myself into the hospital for emergency surgery. My personal preference was to avoid another emergency room visit and to see her and have a planned surgery, so I planned on hunkering down for the next few days and gutting it out until I could see Dr K.

Armed with hydrocodone, heating pad, cable TV, and my iPad, I did nothing but rest. I tried to eat, but all I could muster was Saltine crackers and clear soups.

6/4/13 Tuesday: THE DAY THE WORLD STOPPED SPINNING

I woke up at 3:23AM and could not fall back asleep. Without waking Michael, I plugged in the heating pad and searched the internet on my iPad for a blog to read to learn more about ovarian cancer. Thankfully, I found one that was good enough to keep me preoccupied until Michael got up at 7:30AM.

The entire day felt like a dream. After phone calls back and forth about the new doctor needing a copy of the CT scan and ultrasound films, packing a small bag to take “just in case” they decided to keep me overnight, running over to Methodist Radiology to pick up the disc with the CT scans, and trying to eat some chicken noodle soup (deliciously salty), I felt numb.

Picking up the disc from Methodist was incredibly easy. Traffic was insane. I had about forty-five minutes of waiting at home before having Nick and Nicole drive me over to the cancer center. I sat in silence. I felt like I was going to my own execution. I was filled with dread with what Dr K might tell me.

Would I find out today that I probably had cancer? Would I be told that I was going to die soon?

I felt like I was standing on the edge of a mass grave, one filled with the bodies of millions of women, all killed by cancer. A female holocaust of ovarian cancer.

I felt separate from the outside world, apart from everything around me. I felt different, an outcast. There’s a killer inside me, I thought.

I felt like I did when I finally decided to ride the double loop roller coaster at Six Flags with my son when he was in high school.  Just like on the roller coaster as it  reaches the top of the first hill before the steep plunge into the loops, in that moment of accepting you have no control, I would have paid anyone any amount of money to stop the ride and let me get off.

I felt trapped. No escape.

I felt that, no matter what, it was completely out of my control. There was some peace in acknowledging that, in allowing myself to let go of the branches from the side of the riverbank and glide down river.

The drive over was very quiet. One of my current favorite songs played on the radio (“Safe and Sound,” by Capital Cities), and I took it as a good sign. Two more high energy songs came on afterwards and it had an immediate effect on my mood.

We pulled up to what felt like a luxury hotel. Valet parking, circular stone driveway, and a massive, amazing Chihuly sculpture in the lobby. I immediately regretted never making it over to the Chihully exhibit at the Arboretum last year. Oh well, I thought, at least I got to see this one.

The waiting room felt alive. It was noisy. There were a lot of people, but everyone was talking, laughing, smiling. I wondered how many of the people sitting there had cancer. Maybe they were all actors, hired to sit there and look happy and alive, to give the real patients some hope.

I noticed a sign on the table which said, in big letters: If you have to wait longer than 15 minutes, please tell the receptionist. I was impressed. Sure enough, within eight minutes or less, barely diving into the four page health questionnaire, my name was called. My weight was taken, blood pressure taken (116/78), and we were shuttled back to an exam room where I continued to fill out the form. Dr K walked in less than three minutes later and introduced herself. She needed the form to be completed right then, my husband probably didn’t know where to find us, and I was stressed from the extreme efficiency of the office! She left to find Michael and returned, hubby in tow, just as I finished filling out the questionnaire.

hands

I was nervous.

I immediately felt at ease with Dr K. She spent perhaps thirty minutes asking me in depth questions about my medical history, then about what specifically led to last Wednesday’s ER visit. She wanted to hear everything about what might be the cause of the cyst, and seemed genuinely excited by the mystery of trying to figure out exactly what this thing was.

For the first time in the past two years I feel like someone really listened to me about the confusing menopausal symptoms that have plagued me. One overarching trend I’ve noticed in my internet research has been how the majority of women feel no one is listening to them about their problems and issues. They mostly don’t feel like they’re being taken seriously. I’m glad my son’s girlfriend has been able to go through this with me so she can learn how to stand up for herself if she one day has to go through something similar.

THE PELVIC EXAM. OMG.

(WARNING, MEN! Uncomfortably graphic description of a pelvic exam involving lady parts!!!)

Wednesday’s ER pelvic exam was uncomfortable, but this was ten times worse. No matter where Dr K touched, it hurt. She did a full pap smear, scraping and all, then the two worst things you can imagine (or maybe you can’t): the Absolute Fist Clencher–two fingers inserted into the vagina with her pushing around on the belly and along the vaginal wall and cervix, and the Muffled Scream Move–one finger inserted into the vagina and one finger inserted deeply into the rectum.

Y’all. I am no sissy when it comes to pain. I run marathons. I had both children naturally, sans drugs. I suffered almost every single month from the ages of 14 to 23 with menstrual cramps so bad I would vomit at school and be sent home to wallow under a heating pad for the rest of the day. THIS was worse. Far worse. It was almost unbearable, and I was so embarrassed to react the way I did. I felt bad for Dr K because she kept apologizing for causing me pain, and I kept apologizing for how much noise I made.

After the Muffled Scream Move she shut down shop and stopped the torture. The next person who comes close to touching my pelvis again better have a knife in her hand and and a mask on her face or I just might lose it.

Doctor's office

Have we met?

After this she showed us the scans of the cyst on her computer. Once she explained what we were seeing, it was easy to see what all the fuss was about. Holy Toledo, it was massive. To me, it looked like a big piece of chicken shoved in between my hip bones, my stomach wall, and my spine. No wiggle room. No empty space. Packed in tight.

She said it was too bad her research students weren’t with her that day because it was such an instructive case. I liked that she was excited about figuring out what this was. She was like the CSI inspector of ovarian masses and my abdomen was the Murder Mystery Theater.

We scheduled the surgery for Friday afternoon. She didn’t want to wait and do a colonoscopy first (boy was I glad). She had three small procedures in the morning and said it worked out perfectly in her schedule. Because of the size of the mass, it would not be laparoscopic surgery. In fact, the scar would be quite large. Bikini season is over for this middle-aged mama. Maybe I will get a cool Jack and the Beanstalk tattoo to cover the scar.

She will be removing both ovaries. I had been hoping to save one of them, but she says it obviously isn’t working anyway and will only cause problems in the future. I may be in the hospital up to five days post-op, then more recovery time at home. I mentioned how training for Marine Corps Marathon begins at the end of June and she laughed at how we runners are “all the same.” Everything is contingent on what they find in surgery, but I could be running again within several weeks after surgery. But she emphasized that I will be very, very slow. Pace is completely irrelevant to me at this point. My goal is just to run again one day. Running Marine Corps would be nice, but I’m not going to push it.

We met her nurse and they gave me all their contact information. Once again, these women are organized. I can reach them online, by phone–they are always accessible. Very reassuring. We went over pre-op stuff (I will come back in on Thurs to meet the anesthesiologist and go over surgical stuff.) No solid food on Thursday, an enema Thursday night and Friday morning.

Listening

When we walked back out to the waiting room all the laughing families and happy cancer patients were gone. She had taken as much time as we needed with her. She wanted to check the tumor markers again, and five or six vials of blood were drawn.

I went home a completely different person. I felt upbeat, optimistic, almost giddy. Dr K made me feel that much better. I had gotten a few texts from my close friends during our long appointment, so it was time to start calling folks back and telling them the news about the impending surgery.

After dinner I called my daughter, who said I was “chirping like a little songbird.” Not quite, but I felt better than I had in a month, and I could see a light at the end of the tunnel. I debated posting something on Facebook, not wanting to look like I was trolling for sympathy or pity, but because I knew that my friends’ support and love would hold me up during the tough times ahead. I went ahead and posted a few details, asking for everyone’s “prayers, positive thoughts, and energy vibes,” and it was the best thing I could have done.

Later that night, I fell asleep on the couch while watching TV with Michael and Nicole. I was exhausted, and slept like a rock, waking up occasionally, not believing I couldn’t keep my eyes open. I groggily checked my email when Michael went to bed and was brought back to reality when I saw all the Facebook messages from my friends and family.

Oh yeah. I’m having surgery on Friday. I forgot.

Embracing the fact that my sleep patterns have been all over the place this past week, and acknowledging that I get NO writing done when either of The Talkers, Michael or Nicole, is awake, I sat in bed and wrote for an hour or so while Michael slept. I’ve been writing a lot the past two days, and writing helps. For some reason, when I’m anguished or in trouble, I need to write. That’s when I truly find my voice. It’s what got me through childhood, adolescence, and my divorces. Writing and reading in the late/early hours of the day, when the world is quiet and everyone else is asleep, is my salvation.

Finally we had a plan to remove the tumor and get rid of the pain. I had two days to wrap my head around the idea of surgery, to get caught up on some writing, and to get my things packed.

Or did I?

To be continued . . .

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62 comments

  1. antarabesque

    It’s painful to follow this journey through your words only, words that so effectively convey your experiences. Thank you. May God’s healing hand rest upon you and surround you with Her abundant love.

    • Mind Margins/Run Nature

      I hope it’s not too painful! I’m trying to be as honest as possible without being too blunt or graphic. My point is that this can happen to anyone. My life changed abruptly with little warning. It is possible to get through cancer or something similar without losing your mind–or sense of humor.

      • antarabesque

        The pain comes from the inability to offer physical, in your presence support and encouragement. It is born out of helplessness I suppose. I admire your courage, not only in the manner in which you are facing this rough patch, but your willingness to expose your vulnerability to complete strangers and invite them to eavesdrop on your journey. My prayers go with you.

      • Mind Margins/Run Nature

        Thanks. I think it’s almost easier to be me than one of my family members. All I have to do is focus on myself and getting well again. They have to worry about me, see me in pain, do chores around the house, get bossed around by me, hold down jobs, cook, run errands, and a million other small things. I worry about them doing too much because I can do so little

    • Mind Margins/Run Nature

      Laura, thank you so much. Yours was the first blog I found on ovarian cancer. I read all of your posts in the early hours of the morning until I got up to get ready for my first meeting with the gynecologic oncologist. I loved your spirit, your strength, your no BS way of looking at the world, and your honesty in conveying how your life has changed. THANK YOU for being that beacon in the dark and for setting such a high standard to live up to in my writing. You rock!

  2. Richard

    Hello Angela, 1 st of all, you looked great at Fuzzy’s, your a true warrior, being engaged/experiencing the battle of cancer and still being there for your family and friends. God speed to you. ( sorta a funny how one feels when reading your story…. from sorrow to great admiration on your strength)

    • Mind Margins/Run Nature

      Thanks, Richard. It was good to see you as well. I’m nothing special. You would fight just as hard if you were going through this, and everyone would support you just as much. Thank you for your prayers!

  3. Irish Katie

    I am glad you got to a doctor that you feel good about. I do not like that you have to go through this … but if it helps to know … your writing helps others.

  4. monica

    you are my hero again. yowza for surviving that muffled scream one. OUCH. where is the morphine when you need it??? your strength, fortitude, and calmness are just amazing to me. sending huge blessings of peace your way this evening. – oh, and BTW – you look amazing through it all???

    • Mind Margins/Run Nature

      That was hands down the most painful thing I’ve had to go through in a loooooooong time. I shiver when I remember it. I think I traumatized poor Dr K with my reaction! Thank you, dear friend, for your blessings of peace.

  5. Michelle

    Part of me is feeling relieved – “yeah, good, let’s just get that thing outta there!” But the other part is thinking, “It’s never that simple, is it?” I very badly want it to be that simple, and I certainly don’t want you to be in pain. When you said you hoped to save an ovary, I thought, “NO! OUT! Everything OUT! Whatever you don’t need must go, go, go!” Easy to say when it’s not me. I’d have felt the same way in your situation, though: what can we save? In these types of crisis, I think our minds go all over the place and back again, don’t they? Not just the person it most effects, but all the people who care about her too.

    • Mind Margins/Run Nature

      I only wanted to save the other ovary because I read that it protects against heart disease and osteoporosis. I was trying to think long term, which is maybe kind of dumb in a situation like this. Bottom line is that I would not want to have to go through this same thing again with the other ovary, so it’s a good thing that it’s gone! And you’re right about the mind being all over the place, especially when you’re on pain meds.

  6. Tim May

    aaarrrrggggggghhhhhhhh! There. I screamed out loud for you. I am thankful for a compassionate, caring, and enthusiastic doctor…for you, your family, and friends. Come on lady! Fight this with all your strength, faith, and attitude, and the blessing of a skilled surgeon!

  7. kruzmeister

    I think you are an incredibly strong and courageous woman to not only be going through this but also to be brave enough to share it with everyone. I wish you all the very best and send you all the positive vibes and prayers I can muster. I will certainly continue to follow your story. – Simone

    • Mind Margins/Run Nature

      Thanks, Simone, I appreciate your kind words. One day you may be going through something similar, and maybe it won’t be so scary because you read my story and saw that you can get through this! I hope it helps others.

  8. spottedimages

    I have been following since your first post about this…. and can’t stop looking for updates. Sending prayers and hugs.

    • Mind Margins/Run Nature

      Thanks, I’m writing as fast as I can! I thought I had kept good notes when this all began, but now I’m noticing there were days when I wrote little to nothing, probably because of the pain (or I had too many visitors that day!). Prayers and hugs are much appreciated.

  9. Sally Powell Schall

    As i read this I gasped for your pain, I cringed for your long wait, I cheered for the good Doctor, and I was saying to myself, I can’t believe you lived through that pain for so many days. I lost a Fallopian tube to a huge cyst (fortunately non-cancerous) and I still shudder at that pain. Your spirit is wonderful & encouraging. I always find it interesting how tough we women are. Fortitude. Guts. A sheer sense of we will keep going, keep being, keep fighting. I’m sure you’ve learned as I have in our “maturing years” that it’s also ok to fall into some of those “soft spaces” around us- a loved one’s arms, a friend’s hugs – and that’s a sign of bravery too. Keeping you in prayer Angela!

    • Mind Margins/Run Nature

      Yes, you know exactly what that pain feels like. It’s pretty intense. And you are absolutely right, women can take a lot of pain. I hate asking people for help, and I am having to learn that people want to help, and to let them help. There are lots of good lessons here. Thanks for the prayers.

  10. Our Life In 3D

    You are handling this all very bravely! This is where some of all your training comes in I think. Pain is no stranger to a distance runner, although certainly nothing like what is in this post I am afraid. Still, you didn’t ‘run’ from it but met it head on it sounds like. I wish continued good strength, persaverance and some peace of mind. 🙂

  11. Thomas

    Ironically, this is some of your best writing. I was glad to see you finally found a good doctor. Dr. K sounds more like a “Dr. House” with a better bedside manner. Why can’t more doctors be “interested” in your medical issues like a puzzle to figure out? Isn’t that why they went to medical school?
    Glad you can be so objective about it all. You are an example to follow.

    • Mind Margins/Run Nature

      Thanks for the compliments. We told Dr K yesterday that she is the Meredith Grey of our team. She is nice and fun, but stern when needed. We also have a Christina Yang (both from Grey’s Anatomy). He is the serious, no-nonsense, completely scientific doctor. I’m lucky to have such great doctors on my case.

  12. jodysjourneys

    I have been horrified and saddened as I have been reading what you are, and have been, going through. When someone so vital and into exercise and movement of the body has to cope with no movement and pain, I know how depressing and betrayed you must have felt at least at first. You should feel so proud at how you are handling this and also encouraging others to also feel this way! You are leading by example! After going through two gynecologists recently for small issues (at least I hope), I know and felt how much it must have helped to find a doctor that at least truly listened to you. Things are complicated, and they can’t solve issues if they have 10 minutes to spend with you! It is so hard to juggle whether to be agreeable and just go along or to put your foot down and run the risk of them writing you off as plain crazy or a difficult patient. Thanks for sharing this truly inspiring series of blogs and thanks for taking the time to comment on my blog and make me feel so good all of the time. Anytime I get close to Texas I think of you or even look at Texas on a map rofl! You have always been someone I thought I would like to meet some day and even more so now. Being a huge believer in the power of prayer, you are, of course, in my prayers.

    • Mind Margins/Run Nature

      Jody, you are so sweet. I feel the same way about you, riding around on your bike in the cornfields of Iowa. I would love to meet you anytime you come to Dallas. Just send me a message and I’m there! Thanks for your kind words. They mean the world to me.

      • Mind Margins/Run Nature

        By the way, my son may be working in Iowa next year. They are putting up a wind farm somewhere in the state and he may help get it set up and inspected. Who knows, maybe we’ll run across each other?

    • Mind Margins/Run Nature

      Actually, Melissa, I don’t feel alone at all. I have an army of amazing friends and family, and I feel an invisible kinship with all women who are dealing with cancer, even though I haven’t met them yet. There is strength in numbers. Thank you so much for your prayers!

  13. iRuniBreathe

    I’ve been thinking a lot about you these last few days. Good to have this update. I’m really glad that you are “almost giddy” learning about your surgery. Knowing that there is something concrete to work towards is part of the training plan. So is rest/recovery. Sending you lots of positive energy.

  14. averageinsuburbia

    We are so blessed to have the internet. Years ago we were at the mercy of one doctor. We had to accept what he said, if we were lucky to have one who would explain things in the first place. My imagination can go wild when I’m looking medical things up on the internet but at the same time it is wonderful to be able to do the research and dig for answers. Looks as if with Laura you have found a new source of information and support too. That’s awesome.
    About 20 years ago I had a mystery illness that was very painful and practically immobilized me for a couple years. I went from doctor to doctor before it was diagnosed. I remember well that feeling you describe of being separate from the world and having an alien thing within you. It is a horrible feeling-may it pass soon!

    • Mind Margins/Run Nature

      As someone who has always loved books and thinks a solution to any problem can be found somewhere in a book, I LOVE the internet. I love being able to research on my own and having a world of information at my fingertips. That must have been a horrible experience for you, to be in so much pain and not have anyone able to tell you what was wrong. My feelings of separateness really didn’t last too long. It was more the fear of the unknown and of what was to come. Did I have cancer? Was I going to die soon? Was I ready? I’ve definitely come to grips with what’s going on. To me, information is power. If I know what I’m up against I can fight back. It’s the unknown demons that do me in.

  15. pwhent

    Angela, part of me wanted to wait and read the whole story told in your own stirring and brilliant style. But a much bigger part of me was so relieved and happy to get a sneak peak of what comes later with your revelation that you got good news from the doctor on Thursday. Still keeping you in my prayers and sending lots of postive vibes across the Atlantic. I hope they are getting there!

    • Mind Margins/Run Nature

      They are most definitely getting here. We did get good news, but as my husband says, “it’s the best bad news we could have gotten.” I still have cancer, I still have to do chemo, but things are not as bleak as they might have been.

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