Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

Embrace The Suck

Apparently a very rough twin pregnancy is a great warm-up for chemotherapy. At this point, I’m hard-pressed to say which is worse.  They are both things I hope you never experience.  That being said, there were times over the last four days, when I was glad to be able to say, “It’s bad, but I’ve had worse.”

At the same time, it’s sad that my pregnancy was as bad as chemotherapy.  Telling my doctor that, pretty much shocked the hell out of him.  There are so many ways that they are the same: constant nausea, random vomiting, tired as hell and falling asleep at the drop of a hat.

And then there are the little ways that it is different. There are no chubby babies at the end of this road.  But I will get more time with my babies, so there is that. The big differences are:

1.) The TASTE– Imagine a dead raccoon is rotting in your mouth.  No matter how much you brush your teeth or swirl with mouthwash, it’s carcass continues to decompose.  This is my new normal.  I was warned about the taste, but I’m not great with bad-tasting medicine, let alone this taste.  This adds to my constant nausea and makes it hard for me to drink enough liquid, which is a big deal.

2.) Weird electric currency– So far, I think I’m among the few to complain of this one.  I think it’s a side effect from the “V” drug.  My jaw keeps locking up and it feels like someone is jabbing my jawbone with a cattle prod.  It makes it hard to open my mouth or chew because it can be excruciating. Luckily, this one is fading, so maybe it will only last a few days after each treatment.

3.) Mouth sores– I don’t have actual mouth sores (not yet anyway), but the drugs make your mouth really sore even if there aren’t sores.  Does that strike you as odd? It’s a little like the sensation described above, but more of a mild shock feeling on your tongue or sides of your mouth.

4.) The fog– It’s hard to describe the fuzzy brain that I got.  The best way I can describe it, is that my “Give a damn” is broken.  I’m fuzzy, slow thinking, I swear my IQ has dropped 30 points and nothing matters that much to me.  Outside of my family, not much can move me to do, well, anything.

I’ve begun to see why people lose weigh on chemo.  Eating is a chore and all of these symptoms make food and drink the enemy. The good news is that there are only three major side effects outside of what I’ve dealt with before.  I also suspect that I’ve begun to see the pattern that treatments will follow: Day 1 – feel okay. Day 2- feel bad, Day 3- feel like hell, Day 4- start feeling better.

At least I hope it follows this pattern.  We outsourced the kiddos for Day 3, Saturday, and it ended up being the best thing we could do.  It really scares the kids when I puke and I have to smile and tell them mommy is okay.  I’m not sure I could have pulled that one off on Saturday.

Luckily I was better by the time they came home, and we managed bet time and snuggles.

Baby snuggles cure everything.  

My family is going to be what allows me to get through this.  I need those moments of joy to puncture the fog and distract me from wallowing in my misery.

 

 

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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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Port That You Say?

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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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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