Hormones, Hair Loss and Halloween

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It’s been nearly a month since my first Lanreotide injection. I’ve had some good results – small reductions in symptoms and just enough more energy and steadiness to make life feel more manageable. I’m up and about, have gone out a couple of times without my wheelchair, and even on a couple of excursions without Coleman – to yoga with a friend, to the hair salon.

Hair. My hair is falling out. It was falling out before I started the treatment, most likely due to hormone issues (it’s been falling out for over a year!) but the rate has distinctly increased, a side-effect we knew was a possibility. So, I’m planning on shaving my head. Since I’m going to shave it anyway, I decided, why not have a little fun for Halloween?

Coleman and I attended a masquerade ball with a ‘fire and ice’ theme, and I decided to go ‘ice’. White hair is fun, still a bit of a shock when I look in the mirror, but fun! Stay tuned for buzz cuts, coming next week!

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On Halloween night we dressed up with the kids and took them to the girl’s dormitory at the high school where they were given puzzles pieces and cards (thanks for accommodating our food allergies!) and got to see all the fun costumes and decorations the girls put together. We especially enjoyed Hogwarts, and Around the World!

The Farmer, the Dancer and the Dinosaurs

The bad news is I have a partial bowel obstruction. It’s been an on and off thing for the last month and has worsened in the last few days. We’re in touch with my team, trying medication and diet to help improve things. I’m managing fine at home, but will go in to the hospital if necessary. The worst part is the pain, which seems to be worse in the evening and at night than during the day – while being up and moving seems to help at the time, increased activity brings increased pain when I stop moving. We’re hoping things improve and continue to heal and that I get closer to ‘normal’, but this is likely going to be a condition I live with for the rest of my life, with better moments and worse moments.

Other medical updates: this month we do more testing to try to narrow down my bleeding disorder, visit maternal-fetal medicine for follow up OB/GYN care and see a dietician who will hopefully help us understand what I need in the way of supplements and how best to eat now that my digestive system has been rearranged. I also have my next injection of Lanreotide tomorrow, and we hope it will continue to help me stabilize.

November is NET cancer awareness month and Nov 10 is NET cancer day. Watch for more blog posts with updates on what we’re doing in the NET cancer community and what your support means to us. Thanks for journeying with us!

Back and forth and home again

I’m home again!

The consensus from the team was that while we know SOMETHING is wrong, I didn’t need to be trapped in the hospital (woo hoo!) and could be freed to return to these bouncy babies.

There’s a lot going on, symptom-wise and a lot of possible answers. There could be one or two explanations that cover everything, or a half-dozen things colliding at once. We need more time and more tests to rule things out and count things in. So, are next few weeks look like this:

Sunday September 18: Coleman preaches at the Bryn Athyn Cathedral (9:30 and 11)

Monday September 19: AM Lab work, PM Visit to the immigration doctor for Green Card paperwork

Tuesday September 20: Primary Care Doctor

Wednesday September 21: Fly to New Orleans for the 2016 NCAN NET Patient Conference! Two and a half days of talks and panels with over 20 world-leading experts on NETs and 400+ patients to meet and talk with! (Conference is Thurs-Sat, with an extra meeting on Sunday).

Monday September 26: Fly home from New Orleans

Wednesday September 28: Cardiologist

Thursday September 29: Follow-up with Surgical Oncologist, Follow-up with Resident Gynaecologist

Thursday October 6: Hematology

Monday October 10: New patient visit with Onco-fertility specialist OB/GYN. Since I am still of child-bearing age and the next most likely place of spread for my cancer is my ovaries, we are being referred to a reproductive endocrinologist who is also an OB/GYN specializing in the care of women with cancer.

Last minute appointment of unknown timing: Dr Metz, head of the NET team at Penn, to discuss next steps and treatment options for my care. We’ll get a call a day or two ahead of time asking us to come in when he has an opening.

We are so grateful to have all of these experts (all except my primary care doctor are at Penn) working together to monitor, treat and care for me. We have been extremely impressed by the communication between the different doctors and departments and are confident that we are receiving excellent care.

Right now we are learning to take it one day at a time as my symptoms and energy level vary quite a bit. It is good to be home, where I can rest, but I can also get dressed, go outside and join my children in a bouncy castle.

Puzzle Pieces

If you follow us on Facebook, you may have heard that I was readmitted to hospital again on Sunday, September 11.

There were a number of things that came together that led to my re-admission. I’ve had some concerning symptoms: bleeding, dizziness, pain and nausea. I’m also experiencing some heart concerns – low blood pressure, tachycardia, palpitations, and arrhythmia, and I’ve fallen a couple of times. I have a number of swollen lymph nodes throughout my body, and some unexplained gas bubbles in my abdomen, near the site of my anastomosis.

These are a diverse range of symptoms, with a few different possible causes and a number of teams are involved with treating me. I’ll give a brief update as to where we are at based on each team.

Continue reading “Puzzle Pieces”

The Next Battle

My body is fighting a war, good cells against bad cells. It is being fought on multiple fronts.

There is the cancer. We learned that when I had my second surgery in July (to repair the anastomosis that was bleeding) they removed another microscopic tumor. Too small for the surgeons to see. Too small for the pathologists to see. Only under the microscope, going through cell by cell, did they discover it. This confirms what we and the medical team suspected and assumed: We will be fighting this war for the rest of my life, as tiny tumors sneakily grow. This doesn’t change our management plan; we will still wait and watch, carefully. There is no chemotherapy for my situation. No remission for this kind of cancer. So we will be always at the ready, vigilant and aware, to do what we can to keep it at bay.

Continue reading “The Next Battle”

What Cancer Has Cost

Cancer has cost me.

My appendix, my ascending colon and half of my transverse colon, a portion of my small intestine. My gall bladder. My entire blood volume. My hair, though not all of it, cut to make it manageable, and falling out as the cancer takes its toll on my body. My curves, my body’s reserves, every last store of fat, iron, calcium, pound after pound until I hardly recognize my skeletal frame. Continue reading “What Cancer Has Cost”

Ongoing Recovery and Setbacks

My recovery from surgery has been marked by complications, slow progress, and some steps back as we move forward. Yesterday was a month since my surgery (the first one). This morning we are going back to the hospital with ongoing complications. We’re not sure what we’re dealing with and won’t know until we get some tests done and try to figure things out; however, we have a great team and are confident in their care.

We don’t know what today holds for us. We appreciate your prayers and we are grateful for your love, kindness and support.

Four years and a promise

Four years ago, Coleman took my hands, looked me in the eyes and promised to love me forever. He asked me to marry him, and I said yes, and he slipped a ring on my finger.

Today, he promised again to love me forever, and he slipped my wedding band and engagement ring back on my finger, the swelling in my hand finally come down, and my rings able to fit.

Coleman has upheld his promise, every day, through wonderful moments and terrible ones. These last weeks have been incredibly hard, harder than either of us imagined or were prepared for. He has cared for me through my suffering and suffered alongside me – in many ways I can barely imagine his suffering and think it might be greater. Watching the ones you love suffer is hard. 

The promise to love forever is a romantic one, made on a moonlight night in a beautiful garden. And it is made again and again in daily moments, as he changes my dressings and helps me dress, as he feeds me, and holds the bucket when I throw up, as he holds me steady to and from the car, back and forth to the hospital again and again and learns to drive my wheelchair, pushing through halls that have healed us and left us traumatized at the same time. It is chosen again and again when he gets up in the night to help me to the bathroom, when he brushes back my hair and washes my face, when he held my hands and prayed and prayed during long hospital nights, and as he whispered to me that it was okay to let go, that we all have limits, and having reached mine, it was okay to let go, and let Jesus carry me, through the suffering, or home to heaven, I could let go and rest in His arms.

It is a love that has sustained me and strengthened me in these last weeks and days. Yesterday, we returned to the hospital, and the last weight, the last anchor tethering me to the trauma endured in an effort to hold cancer at bay, a catheter drain, a tube inserted through my pelvis into my abdomen to drain out infected fluid built up post surgery, was finally, FINALLY, removed, and I wept for joy to have this chapter comes to a close.

It feels fitting then that this new chapter, this new day is an anniversary, a reminder of another new chapter we once started.

The promise to love forever is not a light one. It is heavy, a daily choice weighing on our hearts, burdening us to love the other, first, well, as God loves us.

And that’s the miracle. He loves me as Jesus does. The love of God is made real and tangible to me in the love of my husband; as Coleman chooses daily to love me, I feel Jesus come close. 

Three and a half years ago, Rev. Brad Heinrichs placed his hands on our heads as he blessed us during our wedding, as we were made husband and wife. That blessing and benediction is what I feel in Coleman’s daily love for me. The Lord’s hands on our heads, blessing us as we choose to live out the promise we made first four years ago: to love each other forever.