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Fallopian Tube Cancer

In a truly unbelievable twist of fate, my hysterectomy surgeon called today to tell me that there was “something unexpected” in the full pathology (which last week looked all clear and good). They found fallopian tube cancer. I’d never even heard of it.

I am distraught. In disbelief. Sad. Depressed. Worried about my children’s well-being and mental state.

I am one week out from my hysterectomy; still with lots of healing to go; and now I am scheduled for a second hysterectomy-related surgery in two weeks. She needs to go back in and remove my ovaries and some area lymph nodes and some other body part I’ve never heard of that starts with an “o.”

I thought that healing from the hysterectomy was going to be my last struggle for a good long while. And before that, in January, I thought that the medication ramp up of Venetoclax was my last big struggle—time wise and time away from family. Now I’m facing the biggest, most disruptive diagnosis I have had.

My doctor said she thought it would be Stage 1A. So I guessed that meant “surgical cure.” But it doesn’t. She said I would need 6 months of chemo. And apparently it is the really shitty chemo. The breast-cancer type of chemo that makes all your hair fall out. I started bawling, loudly, for the next 5 minutes on the phone with her. It was so upsetting.

How can I have JUST turned 50 and be on my THIRD cancer? The first two are unrelated. What about the newest one?

I don’t want to be “this person.” This sick, needy person who is a burden to everyone. Who everyone needs to care for, feed, be careful with, tiptoe around, worry about. Even with two cancer diagnosis’ under my belt, I don’t see myself as a sickly person. My doctor said “You are young and healthy and will do just fine with the chemo.” I started yelling “I’m not healthy. I am clearly NOT healthy.” And then I sobbed some more. It was the most unanticipated phone call I’ve ever received.

With breast cancer, I had a feeling it was bad. And it was, but it wasn’t as bad as it could have been. Nowhere near as bad as it could have been.

With the CLL, I figured something was wrong. Never had I had an enlarged lymph node on my neck for so long, and I hadn’t been sick either, so I had a bad feeling.

This time, this time I entered the surgery saying that I was 100% sure that it was just a perimenopausal bleeding problem. And that’s what my doctor fully expected as well. During surgery, they sent the uterus and tubes to pathology right away, in case they needed to dive back in and take the ovaries. Best pathologist on staff, said “Looks all clear. Seal her up.”

Now that they’ve had a week to review the specimen, a 2mm spec was found. This cancer affects 1-2% of all people. WTF?

The bright side—if I am forced to find one—is that it was caught early (or so we think). And according to my doctor, this cancer would NEVER be found early, and that really, I am so fortunate that I had the surgery I did.

I don’t feel fortunate, but I know what she means. I am scared. What if this is all a big slide into total sickness, and I’m naive to think this is just another super crappy, horrible time period that I need to go through—and THEN everything will be okay. I’ll still have CLL, but I will be okay… for years. Hopefully many, many years.

Weeks 2 and 3 of Venetoclax

The holiday season, coupled with weekly multi-day trips from Chicago to Houston, has put me super behind in “life” and work. But today, I am down here again to start Week 4 of dose escalation of Venetoclax, so wanted to update on Weeks 2 and 3.

Week 2 included another relaxing stay at the hospital for 2 nights (I kid). The nurses and other caretakers are wonderful, but there is minimal rest to be had as an in-patient.

On 12/14, my blood results were:

  • WBC—148,000;
  • RBC—4.14;
  • Hub—11.3;
  • Platelets—154;
  • Man Neutrophils—4%;
  • Man Lymphocytes—96%

Self-advocacy as an in-patient
Hospital medication errors are commonplace and after my recent stays, I wanted to pass on a few tips. I am being treated at a top-notch institution, and still, it was imperative that I was aware, asked questions and debated several topics to ensure the treatment I was (about) to receive was necessary. Examples: the hospital staff had the Venetoclax dosing and dose increase information correct, but as far as my other current medications—Ibrutinib, blood pressure medicine, Prozac—they did NOT have the proper dose and dose schedule correct. It actually caused me to miss about a half-day of Ibrutinib dosing because the orders were not correct. No big deal, but an error none the less. Also, the in-patient protocols here include vitals taken every 4 hours. On my first visit, I complied, but this resulted in me getting woken several times during the night for nothing other than a temperature and blood pressure check.If I were ill, or having heart issues, this is necessary. But I’m fighting a slow-growing cancer that causes fatigue, so I need my sleep! For visit #2, the new nurse came in my room and started writing “vitals every 4 hours” on my patient board. I asked if that was really necessary. She seemed stunned—perhaps no patient ever has asked to be exempt from this activity!? Anyway, she ended up admitting that I could “decline or refuse” that service, so I did. We negotiated that they would take my vitals around 11pm, when they typically did another blood draw, and then would not take them again until about 6am, when another blood draw was necessary. My negotiation resulted in 7 hours of peace!

Packing for the hospital
In my opinion, earplugs and an eye mask are absolute essentials.

Venetoclax first dose

Just got back from 3 days at MD Anderson. This visit marks the beginning of Month 4, dose 1. I continue taking the Ibrutinib and now have weekly dose escalations of Venetoclax (ABT-199).

My initial blood draw pegged my WBC at 250,00–still way too high to start the medication as an outpatient. So after bone marrow biopsy (super painful this time!!) and CT scans, I was admitted to a leukemia floor at MDA for 48-hour monitoring.

In that time period, I must have had at least 8 blood draws. WBC started dropping immediately after the first dose. By the time I was discharged, WBC were down to 170,000. My RBC also went down so I needed a couple pints of blood transfusion (first ever).

I go back down in 5 days for a repeat 3-day, inpatient stay for week two, dose two. Exhausting but hopefully so worth it.

Tomorrow: MD Anderson again

This week Venetoclax is added to my daily pill intake. I fly down to Houston tomorrow afternoon, and meet my dad. We are staying at the Elan Medical Center condos again, although this time, I may be in the hospital for 2 of the 3 nights. TBD.

So Wednesday morning, I start my series of CT scans bright and early. I have to drink the contrast liquid an hour beforehand, and you don’t receive the contrast liquid until you check in, so you sit in the large waiting room sipping on this big glass of liquid for 60 minutes, and finally they call you. Overall, an easy experience, just takes time. Then I head to get my blood drawn, and from there to my quarterly bone marrow biopsy (not so enjoyable). But hopefully it will yield results showing that my WBC are going down. And hopefully they will get it done quicker this time. Supposed to take 15 minutes… last time took 45 because my marrow is “sticky”—not sure this is a true medical term.

After all the testing, I see my doctor and then he is admitting me to the hospital to take my first dose of Venetoclax. They start the dosing really low now (because of serious problems in the past with patients taking higher initial doses). So after getting into the hospital, which I am sure will take forever, I pop my 20 mg of Venetoclax—and then they watch me like a hawk. At 10pm, I take my “usual” dose of 420 mg of Ibrutinib. I have to stay in Houston until end-of-day Friday and then can fly back home. Same scenario (minus the scans and biopsy) takes place for the following 4 weeks until I reach the optimal Venetoclax dose. It is going to be a crazy, exhausting, travel-filled December for me. I hope everything goes well and that I have energy for my children and my job when I am home.

Six Weeks on Ibrutinib = Minor Side Effects

So in general, I feel fine. I don’t notice that I feel any better than I did before I started Ibrutinib. Nor do I notice that I feel any worse. I will post my basic bloodwork after I run through the minor side effects that I have noticed to date.

First 2 weeks: I noticed nothing different.

First 4 weeks: Add two more weeks to the regimen and I start noticing pretty unsightly bluish, purple and red bruising in places that I have zero recollection of bumping. So that part kinda sucks. Yes, I live in Chicago and it is getting cold and I will wear long sleeves and pants/leggings for the next 8 months, but what about in June, July and August!

We are fortunate to live a few blocks from Lake Michigan and I love meeting friends down there on the weekends or for beach dinners at night. The bruising is very obvious. As in, anyone who knows me—as well as total strangers—will wonder what the hell is wrong with me. I know, I know, it is a small price to pay for my health, and a price I am certainly willing to pay. But I wanted to honestly report the drug’s effects on me.

The photo image was taken today. This bruise is on day 9 or so, and is “healing,” meaning it was much darker a few days ago.

Along with the bruising, I’ve noticed that many minor cuts seem to be taking a long…. long… time to heal. I am judiciously applying antibiotic ointment to them, to hopefully avoid any sort of infection. And today, I even put a bandaid over one minor cut to help speed recovery.

Mouth sores: I have been getting canker sores or something similar along the teeth line on both sides of my inside gums. Nothing too bothersome, but I did some research from other CLL’s and have taken to brushing my teeth with Squigle Tooth Builder Sensitive Toothpaste and rinsing a couple times a day with Prevention Antibacterial Non-Alcohol Mouth Rinse. Buy here >> Squigle Toothpaste and here >> Prevention Antibacterial Mouth Rinse. So far, so good. They have cleared up for now.

First 6 weeks: I would say I’m always kinda prone to constipation, but it has gotten notably worse. I am working on increasing my fiber intake to remedy the situation and will report back if my solution works!

So that is kinda it. I will post my blood results this weekend after I get another blood draw tomorrow. Have a great Wednesday!

Told the kids today

My oldest scrolled through my phone early this morning and then demanded to know what was going on. He read a couple texts from the two friends who know about my CLL. So the announcement was made to the 16, 14 and 12 year old.

Outwardly, the 16-year old is taking it the worst. My youngest listened as I talked with a worried expression, but as soon as I said I should be alive for at LEAST 10 years, he was all relieved and ran off to play with friends. My 14-year old spent a lot of time with me today, but we didn’t talk about it again. And my oldest couldn’t get it out of his head. His thoughts included “You’ll be dead in 10 years.” “You’ll never meet my kids.” “What’s the point of anything now that I know you’re not going to be here.”

Sad things. Deep things. Things you don’t want to have to tell your children and thoughts you don’t want to burden them with. Children are born into this world assuming that their protectors will always be there. My children are learning too soon, that I may not be.

With my children knowing, my friends will start to learn. It’s not like I’m trying to hide it. Keep some secret. Be a martyr. I just don’t want to be a topic. I don’t want people to worry about me. I don’t want people doing WebMD research about my condition.

Sadly, my oldest also said that he doesn’t want to be “that kid” whose mom is dying. I know what he means. I don’t want to be her either.

Ibrutinib, 2 Weeks In

Effects of 2 weeks on Ibrutinib

I am two weeks into starting Ibrutinib and my clinical trial. So far, no side effects!

My swollen nodes have pretty much disappeared! My WBC has risen from 204,000 to 290,000 in the past 2 weeks, but that escalation is to be expected.

Within about the first 3 days, they were dramatically smaller. Today I want to show you the “before” and “after” pics of my neck.

Before Ibrutinib and 2 Weeks after Starting Ibrutinib, Neck Left

Before Ibrutinib and 2 Weeks after Starting Ibrutinib, Neck Right