Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

Unfair

My last post was a little more controversial than I realized. I was asked pretty directly if I thought it was fair to compare infertility to cancer.  For me, yes.  Infertility shaped how I experience and deal with cancer.  Yet, I also know that my journey with cancer is not everyone’s.  My prognosis is positive – this isn’t the case for everyone.  My treatment doesn’t involve hospital stays or blood transfusions – that is the norm for many.  It will take me about 8 months total to beat this, some people fight for years. Others have metastatic cancer or untreatable cancers that fight daily, just for the right to live another day.

I don’t believe our fights are the same at all.  I do think that infertility has made this battle easier for me than it would have been if it was the first major obstacle in my life.  I used to pass out every time blood was taken.  They stop taking the vials if you do this, which made this an obstacle to building my family. This was unacceptable, so I overcame this fear. So much so, that I even survived them taking 19 vials of my blood.

My husband and I gave up dinners out, cable, and quite frankly lost a few friends during the infertility war, because we weren’t a whole lot of fun to be around. We couldn’t go out to dinner, said no to activities and trips so that we could pay for treatments. I gave up drinking on the advice of my doctors, gave up soda, worked out twice a day.  Infertility consumed all of our time and resources and we didn’t have a lot of emotional reserves.

You would think this all changed when we had our girls, our miracles. It did, I’ve never been happier, but trust me, the first year with newborn twins is rough.  We didn’t leave our house for non-essentials for at least 9 months.  I burned every meal I attempted to cook for the first six months. Hell, I’m lucky I managed to keep my job on the 2 hrs of sleep I was getting a night in a series of short 20 minute naps.

Just when the girls started sleeping, we were blessed with the chance to adopt. The chance to adopt with an amazing whirlwind, but kept us in the same state.We would work late into the night on fundraisers for the adoption.  Our reasons for not sleeping and scraping by changed, but the overall state of our lives wasn’t really different.

I’ve had two surgeries as part of this cancer, but I’ve also had 7 surgeries in the last five years- what was two more? My overall health issues, have helped me have perspective for this journey and our current lifestyle has made this an easier transition than I would have guess.

For me, being told that I need to stay home because I’m neutropenic and my white blood cells aren’t high enough to fight off an infection; doesn’t really change my life a whole lot. A lot of what I hear in my support group, just doesn’t apply because it was already stripped away from me throughout the last five years.  I guess, it’s just not the same shock to the system.

Don’t get me wrong, the thought that I could not be hear to see my children grow, to finally have time to just enjoy being married to my husband tears me apart, but infertility and adoption have taught me that sometimes you just have to have faith.  Sometimes you are not the one in control and I can only focus on the things within my control. Infertility gave me experience reading the medical studies and interpreting them to make sure I can advocate for myself, but my time in treatment also gave me ability to know when to stop googling.

Our adoption was a leap of faith, and so is this journey.  I have to believe in my team of doctors. I have to have faith that the treatment will work. I have to acknowledge this is out of my hands and focus on what’s in my control- how I manage the day-to-day and how I make sure I’m there for my children and my family. There is a higher power at work here.

Mostly, I just believe that I will beat this.  Dying is simply not an option, I have far too much to live for. So I will do what I’m told, I will work to manage my side-effects and I will arrange my days so that I have energy at the most important times – morning time and bedtime. Because that is what matters.  Time with my family. It reinvigorates me, gives me a reason to laugh and reminds me just how much I am loved.

 

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Nectar of the Gods

So far, the worst part of treatment has been managing the side effects from the medicines. At this point, I think you could say my side effects have side effects. One of my biggest challenges is getting enough liquid in.

I have a complicated medical history and getting enough liquid in was an issue prior to treatment for a variety of reasons. With chemo, this has gone from a small problem of “I can barely get enough liquid in,” to a crisis of epic proportions.

Two of the possible complications from the medicine are constipation and diarrhea. Maintaining a healthy amount of liquids is paramount to maintaining a balance between these.

I guess you could say my inability to drink anything has led me to the bowels of despair.

What? Not funny? Trust me, if you were my bowels over the past week you’d be howling with laughter over this. I just spent $50 on a variety of medicines my doctor thinks will turn my bowels into an obedient child, and am now on “bowel watch.” That’s right, folks, my BMs are so important that I get to check in every other day until we find the magical mixture to balance the pendulum.

Thank you, chemo, I didn’t already talk about shit enough in my life.

Oh, wait? Was it just this morning that two little girls shouted “Poopie butt–hee, hee, hee” across the table at each other? I guess I do talk about poop plenty already. Since I’m already obsessed with the daily BMs of three people, why not add a fourth to the mix? At least I’m not in diapers.

Back to liquid. Water tastes disgusting. I can’t drink anything carbonated. Flavored waters have always grossed me out. Gatorade–depends on the day. Ice-cold seems to help. Don’t ask me why, but cold seems to mask the flavor.

And now I’ve found it: the nectar of the gods. McDonald’s iced tea. Just enough flavor to mask the dead raccoons/metallic blech in my mouth, and not enough flavor to cause my nausea to turn into a full-body rejection.

If you need to find me during the next four months, I’ll be in line–at McDonald’s.

 

mcd

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It’s Go Time – Treatment #1

Life is fully of wonderfully ironic parallels. When we were going through the adoption, it really struck me as symbolic that we had exactly five months from the date we were offered Baby H until his due date.   I spent exactly five months on bed rest, continually laying on my left side to bring my baby girls into this world.

I guess you can say that I know better than most that five months can feel like forever . And now, I have another five month trial ahead of me.

First, is my chemo.  I will be receiving the “Gold standard” for intermediate stage Hodgkin’s Lymphoma. ABVD.  (A: doxorubicin (Adriamycin®),B: Bleomycin (Blenoxane®), V: Vinblastine (Velban®),D: Dacarbazine (DTIC-Dome®). Each of these drugs will be given one after the other via an IV into my port.  The treatment can last anywhere from 2-6 hours depending on your doctors, dosage and I would guess what your body can tolerate.

I have fourth months of this treatment.  Technically, the doctor is prescribing 4 cycles, which are two doses given 14 days apart. So I will have chemo eight times. 

Side effects I have to look forward to are:

  • Heartburn or acid reflux.
  • A temporary decrease in blood cell counts. White blood cells are the cells most affected during ABVD treatment, which increase my risk of infection.
  • Mouth sores.
  • Flu-like Symptoms such as  headache, fever, chills, sinus congestion, and muscle pain.
  • Nerve Irritation- Vinblastine may cause numbness or tingling in the hands and feet.
  • Nausea and vomiting
  • Constipation
  • Hair loss
  • Heart damage (though not usually at the dose given for Hodgkin’s)
  • Lung Damage
  • Premature menopause
  • Changes in Peripheral Blood Flow (Raynaud’s Syndrome) – Which they are already worried about with my autoimmune marker’s, so this probably makes me more likely to develop this one.

Ooh, ooh, where do I sign up? This sounds like fun!

Nonetheless, every other week on Thursdays, I will hang out as poison drips in my veins to kill this cancer inside of me. The big surprise was the difference in what the doctor proposed in our initial visit versus during his regroup.  Since my kids are so young, he spoke of me getting “white blood cell booster shots” in between treatments when we met with him initially as a low WBC is very common with this type of chemo.

During our regroup, we were surprised to find out that he read all of the current research and research shows that the booster shots interact badly with the “B” drug, and increase the risk of lung damage, which is permanent.  Current recommendations are to avoid the booster shots entirely during treatment and basically let my WBC bottom out. If I get an infection they will then treat the infection.  The other big change between “typical” protocols and mine is that they will try to avoid delaying treatment.  This treatment is most effective if given on time and delaying may necessitate additional cycles.

Following chemo, I will have 3-4 weeks of radiation –  five months total.

Five months of treatment to let me live longer.  It doesn’t sound bad when you say it that way.

Radiation has it’s own challenges. Since the tumors are in the lymph nodes and mine is primarily in the chest, they have to radiate near some very important organs. The biggest challenge is that the tumor basically wraps around my heart and there is a risk of damaging my heart.  The hope is that the tumor will shrink enough from chemotherapy and they can radiate carefully to minimize/prevent damage to my heart. If they forgo radiation, since my tumor is so large, there is a good chance the cancer would come back.  It also increases my risk of a secondary cancer and/or heart failure.

Surgery cannot be used to remove these tumors given where they are located, and even after chemo and radiation I will have little “lumps” that remain inside me for the rest of my life.

The entire treatment plan is a delicate game of weighing risks and benefits. The doctors have to make judgement calls on what gives me the best chance of survival now and also minimizes possible issues longterm.  They don’t want to save me from cancer just to die from a complication a few weeks or years later.

Honestly, in the cancer world, my treatment is short, and it’s a luxury that they even have to worry so much about long-term complications because the long-term survival rate is so high. And those are risks that I will take.  Dead is dead and unfortunately very permanent.

If I don’t have treatment there is one ending to this journey, and that would be a pretty short trip.  By following my doctors plan,  I’ll happily move into the unknown of potential future complications.

 

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10 Things That Don’t Suck About Cancer

10.) It’s an excuse to get a motorcycle! A motorcycle would go great with my new scars and tattoos, right?

9.) No more shaving! Let’s be real, ladies, we all know we stop shaving in the winter, but now I won’t have to shave in the summer.

8.) I get to try out a Brazilian–without the embarrassment of someone actually giving me the Brazilian. Who really wants someone waxing there?

7.) I may actually get to read a book. Granted, it will be with chemo dripping into me, but I can’t remember the last time I just sat down to read a book. I love to read.

6.) I don’t have to cook. My sister organized a “food chain” and I think it will take a U-Haul to bring down all of the food she solicited from friends and neighbors from my hometown.

5.) People will no longer give me shit for wanting to take a nap. I can play the cancer card. That’s right, cancer = my right to take a nap. Every. Damn. Day.

4.) I’ll get to see my family more. My extended family, that is. My mom and sisters are going to travel down regularly as I go through treatments. My children love all the family that has been coming to visit.

3.) No more itchies!!! I’ve been crazy itchy from the neck down for nine months. I wake up scratching myself bloody. They tell me this should go away.

2.) Cancer is cheaper than adoption. I actually repeat this one quite often (for example, every time I open my mail). My estimates put it at about 1/5 the cost of adoption, provided I can keep working and minimize any time on disability. The plus side is, even if I have to stop working, cancer is covered under short-term disability and leave, unlike my adoption leave time, which was unpaid. I’m pretty sure it will end up being significantly cheaper.

1.) I’ll finally meet my Weight Watchers goal weight. I mean, let’s get real. Cancer is probably the only way to hit THAT unrealistic number.

As an added bonus for my husband, he gets to be married to a blonde, a brunette, and a redhead at the same time. Behold, the power of wigs!

Who am I kidding? I’m pretty sure that just about everything is going to suck about having cancer. And that last one? Apparently, not all cancer treatments make you lose weight, and I might actually gain weight on my treatment. I feel like I’m getting ripped off.

Cancer without weight loss?

For a girl who has struggled her entire life with her weight, that’s just rubbing salt in the wound. Thanks, cancer, now fuck off.

 

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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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