Ropes of Death Pearls

It’s dark now, at the end of the day.

There were bright spots in my day: Nathan’s parents sat with me some this morning, then sacrificed time and energy to pick up our girl Keyssie from out of town and bring her to visit me, Sarah-Jayne took time out from preparing for in-laws to bring me books to read in bed soon as I can stay awake long enough to read, Nathan’s parents brought all three of my kids (Keyssie, five, and the toddler) to visit me, which made my heart sing and gave me such courage and hope. I love them so much, and miss them loads while I am stuck in the hospital. My supervisor from work came to check on me, and after work my “parents” the Johnsons came up all this way to check on me, I was so glad, but felt terrible because I could not stay awake. Then Lori Hartzfeld (the new Relief Society President) and Cara Vivian came by, and were as silly as anything. They made me smile! Look what they brought me, in case even my eyebrows fall out if I lose all my hair instead of just my head hair thinning:


It was so funny!

It will go perfectly with my ovarian cancer teal colored wig we ordered.

Besides them, Brother Bristol, our home teacher, and my visiting teacher, Sister Hansen, both came by also. He was sweet to check on Nathan for me, and she was so helpful to talk with about what my doctor said this morning. I told her I was glad she graduated and was a legit nurse, because that’s definitely the kind of visiting teacher I need right now!

Here is what the doctor said today: that he has never seen anything like what he found in me, and the oncologist has only seen it once before at a conference. This is why surgery took five hours instead of 45 minutes.

There were, as he suspected from the ultrasounds and scans, three smaller non-malignant tumors the size of baseballs, and one larger malignant tumor a little smaller than a basketball.

What was unique, though, he said, was that instead of it being one of those soft cancer tumors they pull out careful so not to break or spill any of the cancer, mine were mostly formed into hard rocks.

Not only that, but the malignant one had spread like a rope of rocks (I now call it the rope of death pearls), and wrapped around both ovaries and tubes, pulling them together and wrapping around the uterus, cutting it off, and pulling it back to spread, attaching the whole tangled mess to my pelvic bone and lower spine around my tailbone (some of which had to be chipped away and removed).

No wonder I was in such pain for so long, and sometimes couldn’t stand up or bend over or walk!

It was nasty. We saw pictures.

It took so long, he said, because the tumors were so hard that they literally had to chisel away at them, which is why my recovery pain is so much extra.

The good news, though, is that they were able to get all they could see. It is being sent off to a special lab for pathology something, so we won’t get the results on that until the end of next week, since they had to send the whole lot of it instead of only biopsies.

The bad news is that because it was spread past the pelvic bone to the spine, then that is at least stage 3b, if not stage 4. We will know that for sure from pathology. I will also have a spinal tap and more scans to be sure it has not spread elsewhere.

The other good news is that while the tumors were big enough they could not do a laproscopic surgery, they were able to chisel and roll it and squeeze it out so I only have the horizontal bikini line incision instead of the old school “S” incision they originally thought they might have to do.

We know that in two of the priesthood blessings I received, the cancer cells were commanded to organize themselves because they were out of order even for them. I couldn’t help but remember those words when he talked about how my cancer had organized itself into these rocky chains of entrapment. The doctor said that while it was a bizarre presentation of cancer, and that my case is very unique in this way, it probably saved my life. If the cancer had not grown the way it did as it spread, it would have at this point already spread to my liver and lungs.

It saved my life.

Our prayer requests now are that the surgery was successful in removing as much as possible, preparation for me for chemo before heading home, and also I got a fever this evening that they are having trouble getting down, and they won’t let me go home until the fever is gone.

He said we should get the pathology results by Tuesday, he hopes, but since they sent the whole lot of it rather than only small biopsies, it might take until next Friday. He said I need to plan for six weeks off work, and that we are going to have to be very aggressive in treatment, so overall it could take longer. We will discuss that with the oncologist next week.

In the meantime, he said the third day after surgery is the worst, and several survivor friends told me the third day after chemo is the worst. That means it’s going to be an awfully fun weekend.

I want to go home tomorrow. I did all the things I was supposed to: got off oxygen, got my catheter out, walked my self to the bathroom with nurse help twice, walked to the bathroom on my own the rest of the day, got those leg pump things off my feet, and even had a shower and my bandages changed.

Many thanks to Nathan for helping me take a one-handed hospital shower, since the one tube I am still hooked into is my IV line, which made changing clothes and showering petty tricky. But it felt good to be clean, to have my bed sheets changed, and to be in my own pajamas.

I also got to eat real food for supper, after holding down jello for breakfast and some chicken broth for lunch.

It seemed to me to be a very long day, with lots of big news or big accomplishments in between naps. Some of it was scary news, but at least we know what is the next step. Regardless, I am grateful the surgery piece is done for now, and that my recovery is officially begun, even if recovery means preparing for the next battle.

Or if recovery means resting, which maybe for me is the hardest challenge of all.

I thought resting and being still would be hard for me, like after other surgeries, but this time the cancer and anemia and low blood counts all just have me wiped out, and I am grateful for any moments I can even be awake.

We called Nathan’s sisters and my brother today, giving them the update of what we know so far. I am so grateful for them, and for their love and support, and for caring so much even in their own busy lives. One of Nathan’s sisters is working tons extra right now, and the other one has a baby due at any moment, and my brother was at a funeral for his coworker this week. Cancer doesn’t stop real life, even when it feels like it, and their lives keep going in their worlds. It feels good, then, to receive their messages and phone calls and those little acts of service that mean so much. We love them, and pray for our siblings every day.

The comments, cards, emails, texts, and notes from everyone mean so much truly, as I read them over and over again, gaining strength and peace from them. Thank you.

It is 1030 when Nathan makes it back to the hospital after caring for the kids, getting them to bed, and taking care of the house. It is late enough the doors are locked, and he has to wind his way in through the ER entrance. He is so strong, and so faithful, and so good to me, even on these days with very little comfort or rest or sleep. He is my best friend, you know, and I love him more than anything.

We read our scriptures together, and pray, and he puts lotions on me, and sings me a lullaby while I cry after having to move my body to lie back down. My body has small moments without pain, but the getting up and down and sitting up and laying down is stabbing pains that hurt very much. He is patient with me, and careful with me, and every tear he wipes away makes me love him more. He is good to me, and faithful, and kind. I am not afraid when he is near, and know that whether this battle is one year or fifty, he will always be my favorite part of mortality and worth every bit of it.

Our eternity has already begun, and he is definitely my plan of happiness.


About Emily

I am a member of The Church of Jesus Christ of Latter-day Saints since 2009. I serve as a Chaplain, and work as a counselor. I got bilateral cochlear implants in 2010, but will always love sign language. I choose books over television, and organics over processed. Nothing is as close to flying as ballroom dancing - except maybe running, when in the solo mood. I would rather be outside than anywhere else, especially at the river riding my bike or kayaking. PhD in Marriage and Family Therapy, and currently doing a post-doc in Jewish Studies and an MDiv in Pastoral Counseling. The best thing about Emily World is that it's always an adventure, even if (not so) grammatically precise. The only thing better than writing is being married to a writer. Nathan Christensen and I were married in the Oklahoma City temple on 13 October 2012, and have since fostered more than eighty-five children. We have adopted the six who stayed, and are totally and completely and helplessly in love with our family. Nathan writes musical theater, including "Broadcast" (a musical history of the radio) and an adaption of Lois Lowry's "The Giver". He served his mission in South Korea, has taught song-writing in New York City public schools, and worked as a theater critic for a Tucson newspaper. This is not an official Web site of The Church of Jesus Christ of Latter-day Saints.


Ropes of Death Pearls — 10 Comments

  1. Your journey is not my journey, but every time I read your account, i get deja vu feelings all over again. Well, you are alive and kicking, though maybe not cheerleader style. Take whatever pain meds they will give you, and watch out for Sunday…everyone will want to visit that day.
    love you and praying.
    Rebecca Anderson

  2. It is so nice when Heavenly Father blesses us with our Eternal companion. I know through my illness last fall, it would have been very easy to just give up. There was a few moments had Kris not tearfully looked me in the eye and begged me to stay with him, I would have just crossed over. It was a fight. It took two months just to attend church again but eight months to feel right. Could not have done it without him. Nathan is a good man and I am so happy you guys have found one another. Eternity seems to short of a time sometimes when we (Kris and I began our journey at 40+)get such a late start. Love you guys. Hugs from far away.

  3. Your courage and faith amaze me. Since I began following your story, I’ve had to re-evaluate how I look at my own life, and I’m sure that’s why God put discovering you in my path. I pray a thousand blessings on you and your family, and angels to bear each of you up as you contend with the battle ahead.

    I loved how you put it…that your eternity has already begun. You give me hope that someday I will find someone who is my own plan of happiness and will bless both me and my children. Praying for you in love!!

  4. Emily, I too have gone through Ovarian Cancer, but I must admit not to the extent that you are experiencing. It has been 30 years now, and I almost forget the trials of that time. Keep up your wonderful spirit. You have already endured so much in your short life. Maybe it was all to prepare you emotionally and spiritually for this time. You are such a strong person and an inspiration for everyone who crosses your path. I know you probably doubt that statement at times, but you may never know how far reaching your influence has and will be. We all pray for you and with you and I know you feel the love of hundreds. You definitely are a very special person.

  5. You are a spiritual giant Emily. Every time I read your words I feel uplifted and astonished at your faith. You are definitely one of the greatest children of God I served on my mission. I love and pray for your continued happiness. Your eternal perspective is something to be desired in all of us, and it’s something that very few people have. Your testimony is a treasure to all that you share it with. Thank you for being such a bright light amidst so much darkness, you make me want to be better than I am. Sure Love Ya.

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