Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

X-Rated

Give me a “Two”. Give me a “B”. Give me an “X”?

After the nurse shared the notes on the bone scan, we waited impatiently to speak to the ENT. After a week, we finally had our chance, and the meeting was a complete bust.

He confirmed that the tumor was about the size of a football and (previously) extended from my chin to below my heart basically. The PET scan also confirmed that the tumor did not extend below the diaphram or into the liver or spleen, which was definitely good news.  He too mentioned the bone activity, but refused to comment as to what this meant by stage – the oncologist was going to have to weigh in.

Another week of waiting.  We had actually scheduled our meeting with the oncologist as soon as the first biopsy came back and three weeks was the soonest we could get in.  The ENT kept plugging away at the necessary tests while we were waiting on that visit so that we could start treatment sooner once we were in with them.  And still.  We had to wait another week.

I googled, researched, we looked at the PET scan ourselves.  Everything we could find said that if it’s in the bones it’s stage IV.  We researched the different in treatments. If it was stage II, it was an “easier” chemo.  A chemo that tends to be better tolerated.  If it was stage IV the treatment was viewed as universally more difficult.

The difference in stage would make a world of difference in how I could take care of my babies.

Our visit with the Onc finally arrived. First he asked me a series of unending questions in detail about the symptom questionnaire I had filled out. Then he mentioned stage.  We held hands and our breath.  “You are difficult to stage. ” Not a good start.  “But I think we’re going to put you at IIB, because you appear to have some symptoms, and research has shown people with symptoms often need to be treated as if the cancer is more advanced.”

 IIB?

We were elated!  “The radiologist is going to have to weigh in as to whether or not your are considered an X as well, because your tumor is borderline.  I’d like to know more about your sed rate……..” I’m not sure I caught everything he had to say here. My mind was stuck on  STAGE II!!!! I finally worked up the nerve to ask about the bone activity.  The Onc explained with lymphoma it’s pretty common to see bone activity on the scan, but they look for signs of bone involvement.  Basically with bone activity the bones show up pretty evenly on the PET scan. With bone involvement there are bright spots in the bones that show active growth of cancer. Bone activity is normal, bone involvement is bad news.

Thank God.

We finally landed at me being stage IIBX for treatment purposes.  My tumor is slightly shy of the size requirements for “Bulky” which is the X, but because it’s borderline, they looked at my sed rate (rate of inflammation) and it was 29.  Over 30 would make me Bulky.  Basically neither the Onc or the Rad Onc was comfortable NOT treating me as if it were bulky, because if you under-treat and it comes back, you have much more difficult treatment options for a recurrence that are tolerated far less.

We are proceeding with caution when it comes to staging. The difference between just II and IIBX is an extra month of chemo and three weeks of radiation.  I’ll take it if it means the cancer will be gone.  I’d rather be cautious to avoid a recurrence.  It’s also not so much additional treatment that potential long-term effects increases exponentially.

As we left the appointment we were giddy, laughing and hugging each other. Stage II! Never thought I’d celebrate having Stage II Cancer, but celebrate we did.

 

 

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The Staging Game

There is this strange time of limbo after you receive the diagnosis of cancer and before you know just how bad it really is- aka your stage. For me, this was an agonizing period full of tests.

First the yes-no-maybe biopsy as I like to call it. If you’re into details it’s a fine-needle aspiration. Basically they numb the hell out of you and then tap on you with something that looks like a pen. Since mine was on my neck, I couldn’t help but think of this scene from Gross Point Blank. GPB Kill

Mine, was a bit less bloody, but you get the idea. The sample is really small with this, so most people get a no or a maybe. Our ENT was very surprised that they were able to get enough of a same to not only to get a “YES!”, but to confirm it was Hodgkin’s Lymphoma.

Apparently because this test gives so many maybes, type from this is not enough for an oncologist to treat based on it.  You also have to know the specific subtype of your cancer.  I also had to have an incisional biopsy where they take a sample to basically DNA test the type of cancer. The ENT had mentioned this on our first visit and explained it as, a biopsy to remove about an inch square so that they can make sure if it’s cancer or not, if it is, we’ll use that to know exactly what kind.”

A lot had changed since that first visit.  We knew it was cancer, but it didn’t occur to me to ask the doctor more questions.  We scheduled the second biopsy and away we went. As you can see, it turned out to be much more than a one inch incision.  The ENT decided to give me a leg up on treatment and removed all of the tumor he could above my collar bone, which turned out to be the diameter of a baseball.

IMG_5861

Much to my surprise, I came home with a drain.  Now imagine for a minute that you are a ten month old baby.  Earrings fascinate you… necklaces are the stuff dreams are made of…

A drain? Mommy is just carrying around a new toy for you. All. The. Time. The struggle began.  I dodged, I weaved, I held Baby H strategically, and still we sruggled.

Trust me, someone pulling on a tube that’s stitched into your body HURTS.  The girls did okay, I was able to explain “Mommy has an owie, and it hurts if you touch her pouch.”. There were a few hiccups with things like bedtime.  Trying to feed Baby H was a bust, my drain was too fascinating for him to even think about sleeping, so I was on twin duty. Rocking two girls with tubes and a pouch full of blood, and I don’t want to know what else is tough, but not undoable.

We muddled through.   Getting the tube out was a major relief though.

And still.  These tests where nowhere near enough to tell me my stage.  That required more blood work and a PET scan.  Compared to the incisional biopsy the PET scan was a breeze.  It was a little surreal.  They inject you with a radioactive sugar so that the cancer can eat the sugar and then the parts of your body that absorb the sugar will glow on the scan.

The nurse came in wearing full protective gear and carrying a little silver chest that he then opened after entering a code, completing a retinal scan and offering up the secret handshake – it seemed like that anyway.  After opening it, he removed a syringe that looked like it belonged in Austin Powers.  It was huge and silver and so over-the-top it couldn’t be what they were actually going to use on me.

PET

Much to my surprise it was. I was injected, then simply waited an hour for my cancer cells to get their feed on.  After an  hour, they completed a quick scan and I was done.

And now we were back to the norm with this process. We waited.

The results from the 2nd biopsy trickled in first- Hodgkin’s Lymphoma Nodular Schlerosis.  All good news.  A very treatable cancer with the most common subtype which keeps it very treatable.

We didn’t get a call on our PET scan, so I decided to phone the nurse and she read me the radiologist notes.  I only really heard one part of it. “Bone activity detected.”

My heart dropped to the floor. All of my online research, only mentioned bone activity with stage IV.  I asked the nurse if she could tell me more, and she basically said, she really didn’t understand the results.  I’d have to wait until I talked to the doctor.

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C.A.N.C.E.R

“You have cancer”.

Because we knew things were getting serious, my husband had accompanied me to the CT and biopsy.  I never expected a radiologist to utter those words.  Typically, a radiologist doesn’t tell you ANYTHING. They dictate a report and your doctor calls you with the result.  The ultrasound tech looked at us with shock after he uttered those three words and walked out the door.

“Did you have any idea? Are you okay”

I can’t speak for my husband, but after all my years of infertility treatment I know how to work Dr. Google to my advantage and had poured over the literature and knew the small list of what this neck growth could be.  Cancer was a surprise, but not totally unexpected.  Being told without a biopsy to support it WAS a surprise and a concerning one.

The radiologist came back into the room and was apologetic.  He must have realized the news was new to us, and he explained that my tumor on the CT extended from my neck to below my heart. It was a very large tumor, and in his experience, he thought the results of the biopsy would show that I had  Lymphoma.

More was said, but my husband and I just held each others hands. All I could think about was that I needed to be here to see my babies grow up.  They are just babies! They can’t grow up without their mama! How is my husband going to handle three kids under three all by himself?

 

 

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The end of my world as I know it.

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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Resolute

“I just want you to know, I’m not going to change my mind about giving you this baby.”

For those of you who have been reading my blog for a while, I’m sure that it’s apparent what my biggest fear is. I’m so afraid of losing another child. We’re not unusual–hell, in the infertility world, we’re not even a particularly sad story. I know women who have had four, or five, or even six miscarriages.

I can only admire the strength it takes to try again when that much pain has gone before. Tim and I had discussed this at length and losing a fourth child was our limit. We would not have attempted another pregnancy in my body. Amazingly, my girls held in there, my body held out long enough and they are here with us today. And even though they both have ear infections, one is getting a set of molars in as we speak and my evenings and nights this week are filled with crying, fussiness and very little sleep, I wouldn’t miss a single solitary minute of it.

“I just want you to know, I’m not going to change my mind about giving you this baby.”

When our birth mother made this statement, I could hear the conviction. She was addressing my biggest fear head-on. And I believe her. We both believe her. I’ve focused so much on my journey, our journey, in the blog, because her story is simply not mine to tell. But that doesn’t mean she hasn’t been on a journey of her own; that she hasn’t thought this adoption through.

Sometimes, I think that maybe she is light years ahead of me in this process. She knew about this pregnancy long before we did and had those extra months as she contemplated her options and decided on adoption.

We’re playing catch-up. We entered with far more exuberance and hope than knowledge when we dived into the adoption. And we’ve stumbled our ways ever since. I finally feel like we have the right team surrounding us to help us navigate the waters of this adoption. The new counselor is stepping in to help with the entrustment ceremony. She’s also offered to help us finalize a plan for contact between our families going forward. I welcome an experienced person to this process. I’m not sure how it all should work.

This is where I believe a private adoption is definitely harder than an agency adoption. The middleman is lacking in a private adoption, and you either have to hire one or figure it out on your own. You have to ask the right questions in order to find the answers. And if you fail to ask, you may stumble into a quagmire.

To me, an agency adoption appears to have this central lynch pin. For us, this help comes from so many directions. Our home study agency suggested the classes, and has provided direction on key steps in the process. This is really going above and beyond what we’ve contracted with them. The new counselor has done the same.

“I just want you to know, I’m not going to change my mind about giving you this baby.”

In the end, whether we stumble inelegantly or move with the grace of a gazelle through this process, nothing else matters but the end result. Every minute of worry, every bit of effort we’ve put into this process will be worth it when we hold our son in our arms.

Want to help support our adoption? 
Visit our youcaring page and make a donation. Until March 1, each $20 donation will get you entered to win a 3 night stay at the Lake of the Ozarks in Osage Beach, Missouri. View here for more information.

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