Cancer Ever After

Musings on Infertility, Adoption, Cancer and Widowhood.

Mar 13

What Cancer Stole From Me

by nhenderleiter

You have to remember, I’m coming at this backwards from a lot of young men, women and children who are diagnosed with cancer. For far too many, cancer steals their dream of a family, their ability to have children. For someone who is young and diagnosed with cancer, they are often told there isn’t time to preserve their ability to have a family in the future.

Cancer couldn’t steal that from me.

I am already infertile. I’ve already fought that war, and I’m so blessed to have three amazing children to show for it.
Cancer also shows you that you are mortal. It steals the illusion that you will live forever. It adds a paranoia about your health, worries about cancer coming back, fear about developing a complication. It changes your expectation from living into your 80s or 90s into one (once you survive) of living into your 50s or 60s.

Cancer couldn’t steal that from me.

I have an autoimmune condition that contributions to my infertility, and is quite possibly to blame for me getting cancer. For now, I’m diagnosed as MCTD (mixed connective tissue disorder), but my rheumatologist really believes it’s lupus, even though I don’t meet the clinical criteria. I have no illusions about a life without health complications, because for the last six years, my health has been nothing BUT a series of complications. This is the reason they think my liver failed in pregnancy. It’s why no additional pregnancies are recommended for me.
I’ve poured over the scholarly articles. I’ve read the statistics. My mortality has been shoved in my face for several years now.
Tim’s and my reaction to the cancer diagnosis was shock, followed by “of course, it’s cancer.” That’s just the world we live in. I’m the 2%, medically speaking. I thought my one advantage coming into this battle is that there wasn’t much more that cancer could steal from me.

I was wrong.

Tim and I were in the process of donating our frozen embryos and the process takes a little over a year. We started the process the month Baby H was born because we knew our family was complete, and even if we decided down the road it wasn’t, my body could not sustain another pregnancy. We both wanted to donate our embryos to another couple.

We’ve gone down both paths in this infertility journey: IVF and adoption. We know the heartbreak of loss and we know how much you can love a child who comes to you as a gift from another. Those embryos represent hope for another couple, a chance for someone else to find their family. They are the dream of something more–that one of those embryos could become someone’s sought-after child.

 Cancer stole that from me, and it breaks my heart.

Cancer also took that hope from somebody else and they don’t even know it. One or maybe two couples could have had a chance to find their family.
Our fertility clinic notified us today that we are no longer eligible to donate our embryos. The logical part of me understands. My type of cancer has a genetic component, and, combined with my autoimmune disorder (which is sometimes genetically related), the clinic can’t broker an embryo adoption in which a couple may end up with a child with a possible known genetic condition. If I were looking to adopt an embryo, I wouldn’t take that chance.
My heart is an entirely different matter. I’m sad, angry and whole host of other emotions I can’t even describe. I mourn the loss of hope and want to rage at cancer for taking this from me, from us, from those possible parents-to-be.

 

 

 

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Mar 2

Port That You Say?

by nhenderleiter

In the cancer world, to port or not to port is the question. Prior to my diagnosis, I didn’t even realize this was a question. Don’t get me wrong; I knew what a port was, I just assumed it was standard. In fact, during my not-so-short hospital stay for my pregnancy, I begged for a port so that I could forgo my twice daily blood draws.

Ports aren’t universally recommended, depending on the type of cancer and your length of treatment. I’m swimming in a cancer world now. My boss and one of my coworkers at my very small company both also have cancer. For my boss, his cancer is more advanced and the treatment options are limited, so they wanted to hold off on the port as long as they could due to the possible increased risk of infection. For my coworker, it was assumed she’d get a port because the drugs are that hard on the veins and her treatment course was very long.

Me, I live in that gray window. The drugs are harsh, but my treatment is considered pretty short by chemo standards. It was up to me.

Sign me up!

My oncologist barely had the chance to utter the question before I said, “Port, please!” I’ve been there, done that when it comes to blood draws. I’ve had daily, I’ve had gallons taken at once (okay, 19 vials), I’ve had bad sticks where they blew through three veins before they found a good one. IVs are difficult on me because I have small veins. One of my juiciest veins is on a nerve, and I’ve gritted my teeth and accepted the pain every other day for five weeks as they stabbed at it to keep my babies in me longer. Having a port would make this unnecessary.

This was the extent of my conversation about getting a port.

Big Mistake

My port surgery came and went without a hitch. It wasn’t until after the procedure that a key little nugget of information came to light. I couldn’t lift any of the kids, because I wasn’t supposed to lift over ten pounds. WHAT??????? We had no help arranged. I’d considered this a minor procedure, and given the number of procedures and surgeries I’ve had over the last five years, it didn’t even register that there would be any issues other than normal recovery afterwards.

A port doesn’t exactly work like that. I don’t fully understand why, but when they put the port in your chest and then loop it into a vein, it makes your body go haywire. It was excruciating if I accidentally lifted my arms to about chest level. I couldn’t have lifted ten pounds if I wanted to. My arms ached randomly (and still do sometimes).

They sent me home with orders to take Tylenol if I felt bad. I went home and ran for my stash of pain pills from my last surgery. They became my lifeline for the next few days. Luckily, my in-laws rallied and helped with the kids.

Later, I learned that my experience was one of the BEST for port placement. My coworker said hers was more painful than a mastectomy and ached for weeks. Most said the excruciating pain lasted a week or two. Why did none of the doctors mention this? Once again, I realized it’s up to me to ask the questions.

Technically, I wasn’t supposed to lift the kids for ten days. Big surprise–I lasted three. Who are they kidding? I actually think this helped me. The movement made my aches go away. I also slept in a bra because I found this helped to minimize the pain at night.

I need to remember what helped the most during infertility: it’s up to me to ask the questions and up to me to advocate for myself and my family.

 

 

 

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Feb 17

The end of my world as I know it.

by nhenderleiter

First off, let me start by apologizing. I left this blog so abruptly. I meant to tell more details of the birth of Baby H and neatly end the blog with our happy ending.  Make no mistake, it was a happy ending.  Our court proceedings went well and our adoption was finalized without a hitch.

I just couldn’t bring myself to take  a break from soaking him up to write.  Maternity leave was AMAZING.  Taking care of ONE baby when you AREN’T recovering from childbirth is the stuff dreams are made of.  Baby H was so easy-going, he was a dream to take care of and leave gave me extra days with P1 and H to play and have fun.

At three months, I wanted to write, but life was beautifully, wonderfully hectic with three kids under two.

I thought about it again when Baby H turned six months, but the little stinker was starting to crawl and really giving us a run for our money.  I was just so tired in my down time and I couldn’t find the time to put the words down that I kept writing in my head.

Updating you was a passing thought at nine months when Baby H was standing and trying to walk.  He was already saying words!!!!  But we’ve been basking in the milestones, and once again, I was just so tired between the kids and working.

Then Baby H got sick. I got the call from daycare and picked him up.  His temperature shot up to 104 and we made our first ER visit.  My girls had never had a fever this high and I was out of my mind with worry. The ER very condescendingly let me know we were overreacting and sent us home.

That night the fever climbed to 105.  We rotated ibuprofen every four hours religiously and continued to call the doctor with updates.  The next day, I made a quick run with the girls to get more ibuprofen.  That’s when I noticed that something was wrong with my neck.  I tried to turn my head and it felt like something “caught” in my neck.

I put it in the back of my mind and went home to take care of Baby H.  After four nerve-racking days of 104 degree fevers it abruptly broke, and Baby H was in the clear!  Somewhere during this time, I had gone to the bathroom to figure out what “caught” in my neck.

After looking closely I realized I had a lump in my neck. As soon as Baby H’s fever broke I called the Drs office to schedule an appointment.  When I told them why I was calling they said, “Why don’t you just come in to our prompt care.”  As soon as I got there, we were the first ones admitted, even though the waiting room was full.  I thought it was strange, but didn’t give it much thought.

The doctor look at my neck and recommended an ultrasound and bloodwork. As I was leaving, he casually mentioned, “We should rule out leukemia just in case.” Talk about your bedside manner!

Within the hour, Baby H and I were sitting in an ultrasound clinic and the lump was being scanned. I hadn’t been able to resist googling and knew that a cyst was a possibility.  I asked a few questions, and the tech told me enough for me to know that this wasn’t the case.

A few nurses came in to entertain Baby H while I had a very extensive scan.  The tech then asked me to go to the waiting room. I didn’t even know ultrasound clinics had waiting rooms!  After about 15 minutes she came back to tell me that the doctor would be giving me a call.

At this point, I knew that something was wrong, and it was more serious than I hoped. My mom has thyroid issues, so that seemed to be a strong possibility. The  urgent care doc said I needed to get into a specialist and he was going to make a call to an ENT clinic.  Within the hour, the clinic called me and they were going to get me in that day.

Three appointments in one day! I called my husband to let them know this was getting serious.  The ENT reviewed my ultrasound and talked about abnormal things in my thyroid and a growth with bloodflow. He wanted me to get a CT and a small biopsy so that they could learn more about the mass in my neck.

Just seven days later, my head & neck CT quickly became a head, neck & chest CT. I knew. I just knew, when they added the extra CT without telling me that something very serious was wrong.  The radiologist confirmed it.  Before he even performed the biopsy, he turned to me and said three words that turned my world upside down.

“You have cancer.”

 

 

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Apr 13

There’s Fire?

by nhenderleiter

6 days prior to the scheduled induction

I woke up in a strange bed with the sound of familiar barking ringing in my ears. It took a moment to orient myself, but the events of the prior evening came rushing back to me. The labor that stopped. Was the baby coming today? Tomorrow? We were about two weeks from the official due date, so the false labor may or may not have been a sign of things to come.

First things first: Tim and I needed to decide our plan of action. Since today was a Friday, we decided to leave our girls with the in-laws and stay near the birth mom. My mother was still out of town and we didn’t want to chance heading home just to turn back around.

That decided, we texted our birth mother and arranged to visit. The poor girl was miserable. She was at that point of pregnancy when sleeping, walking, eating, breathing, everything was difficult and/or painful. She was ready for the baby to be out TODAY.

We were on board with that. Early isn’t ideal, but she was 38 weeks at that point, so it wouldn’t be the worst thing. Over the next three days we walked with her, bought her spicy food, and helped her swing at the park, all in the hopes that she would go into labor on her own. No dice.

5 days prior to induction

By Sunday, we’d determined that Baby H wasn’t going to come out until the induction. While we all wanted him to come on his own, it just didn’t look likely. Tim had used his meager vacation time with the girls’ illnesses and I needed to save mine for parental leave. We had to go back, even if it meant that we just turned right back around if and when labor began.

Mainly this was because we really missed our girls. We had never been away from them for this long. I physically ached being away from them and FaceTime just wasn’t cutting it. Phoebe looked miserable and confused when we FaceTimed with her and it was breaking my heart. I needed to hold my babies.

And yet, I couldn’t wait to hold all of my babies.

4 days prior to induction

The other reason I was grateful that we came back was that I had only hired my replacement at work the week before. The poor girl had mere days of somewhat distracted training on key items. I hadn’t met with the teammates that would be taking over my other responsibilities while I was on leave.

I went in to the office in the wee hours of the morning, prepped file after file, and then conducted a brutal day of client handoff meetings. I was frantic to make sure everyone know what needed to be done while I was out on leave. These extra few days would make this possible.

3 days prior to induction

I received a text: “Doctor has decided to induce a day early.” I laughed when I received the text. That was the day we had been lobbying for all along. A Wednesday induction worked a lot better with regard to getting the necessary court order to release Baby H into our custody.

I called Tim and we quickly modified our plans to get there early. We were so ready.

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Mar 24

Baby’s on his way – a Dad’s perspective

by nhenderleiter

“Are you excited?”  My mom asked.  “Yes, but this time it feels different.” For us this pregnancy has only been five months.  We have been so busy working to make the adoption happen that the time has just flown by.  Between work, our girls, normal housework and upkeep, fund raising, trips to see our birth mother, getting our son’s room ready, and everyday life something feels lost, missing.  The awestruck wonder of becoming a parent, again?  Maybe it’s different because we know we can handle another baby?  Maybe its due to how rapidly this process of adoption has been moving along?  Maybe it’s that we have a game plan and are following it?  Could it be shear exhaustion? I paused and looked back at our journey to become parents and the year and a half since our girls were born.

Discovering that we were infertile and coming to terms with it was a painful and lonely process.  Most of our friends and family have children and did not have any issues doing so.  Understanding and true compassion seemed to be in short supply.   The ordeal seemed to alienate us from many of our friends and co-workers.  Until we opened up completely to our families and gave them day-by-day updates on our last pregnancy, they did not seem to be able to understand or relate.  Many of our friendships did not survive the process of getting our girls and the first year of their lives.  However, the fun we have as a family has replaced the nights of hanging out with friends and going to parties.  And we’re meeting new friends through the various mommy and parent groups that Nichole has joined.

When our girls were born numerous people commented to me that we could try again and have a son.  Several people seemed to pity me or be saddened that I have two girls and no boys.  This did not bother me as I love my girls more than I though possible.  It did, however, make me sad for the people making the comments. However, when I heard that baby H was going to be a boy, I was thrilled.  While I look forward to introducing my son to my interests and hobbies with the hope that at least some of them will resonate with him, I know he will be his own person.  Just as my girls are developing their own personalities, my son will be unique.  Someone that I will get to know and love as he grows.  I hope that he is able to introduce me to new interests and hobbies, that I will be able to discover a whole new world with him.  I do not want a “mini me”; rather a new piece of the puzzle to fit into our family creating a clearer and ever-developing picture of our future.

My friend John once told me, “Being a dad is the best thing in the world.  You come home and your kids stop what they’re doing, run over to you, and jump up and down singing, “Daddy’s home!, Daddy’s home!” at the top of their lungs while grinning ear to ear.  No one else has EVER reacted like that when I showed up at work, or anywhere else.”  I’ve seen his daughter Maddie and son Ryan do this on numerous occasions.  Until I became a dad, I thought John was just being funny. Now when I enter a room after being gone for a while, and my girls reach for me and shout “Da-da!” I know exactly what John meant.  It may be selfish, but I look forward to one more voice being added to the chorus.

They most common thing that I hear when people see my twins is, “Boy, you have your hands full!”  While this may be true, I have learned to adapt.  I have become quasi-ambidextrous,  plan several steps ahead for everything that I do, and encourage the girls to be independent and do as much on their own as possible.  It also helps that they are in the “it’s fun to help phase.”  Dealing with twins is not the exhausting ordeal that it used to be, it’s just the way it is, and we do quite well.  Adding another to the mix will be challenging, but not impossible.  While my hands may be full as I care for my girls my heart swells with love and pride every time they learn something new – a word, a task, figure out how to use something, or understand a question or request and respond in a positive way.  There is still more than enough room in my heart for another child.

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