C1D2

Ugh. Today was short, in and out in an hour. Just a second dose of the nitrogen mustard derivative. WWII FTW! And no steroids. I feel like I’ve been poisoned. Oh yes, I have been. Cause that’s chemo, poison the cancer and stop shy of toxicity in the person.

To give you a picture of how much energy I have, my water bottle has a straight straw in it, which I am finding is way too much effort. So last night I ordered reusable straws with a bend in them, and am now super annoyed the package hasn’t shown up yet. It’s been out for delivery, one stop away, all afternoon. Total #firstworldproblem.  The again, it’s fitting, since as I proved on Twitter, Hodgkins in #spoiledbratcancer. How’d I get that? When you look for epidemiological correlations, you get few siblings, no preschool, upper middle class childhood and late EBV/mono exposure.  Ergo: spoiled brat cancer. Which I find fitting considering how much my mother called me a spoiled brat growing up, but that’s an old post I actually took down years ago.

So anyway, this has been my position for the past 2 days. Plus or minus some potty breaks and water bottle refills. At least it’s a nice view. Add in my Hawaiian shirts, and I can almost believe it with this heat and humidity. Definitely the leeward islands.

C1D1

Not bad. I’ve had worse lol

Bad based on one day, I suspect my heartburn is going to come back with vengeance. Luckily, I still have the massive bottle of tums from before I got it under control a few years ago.  I was up every 3 hours last night to grab some. Since I go back today, I’ll be asking about zantec.

And I think I got some little hives last night. They could have been mosquito bites, but there wasn’t a “bite” size bumped. And then Benadryl knocked them out. Usually I need zyrtec for mosquitoes.

I spend most of the afternoon in my hammock. Because I could. I almost logged in to work,  but decided I could actually not. Even if I’m a bit annoyed at myself to hear my work product has dropped to about average. That’s not me! And there is a part of me that like saying “dude, what’s *your* excuse?” Or at least thinking it. I did have to have a conversation with a team member this week on getting some stuff done. I asked why it hadn’t been done yet, then wisely backed off with “why isn’t important. When and how we move forward is.”  See, I can be nice!

More nitrogen mustard compounds today. Blech. However, I think sweating it out works as a mosquito repellent! Pretty sure DEET is a safer, cheaper option. But whatever. I was noticing bugs weren’t bothering me yesterday, and smelled me arm. It smelled funny. Kyle confirmed that when he got home. We couldn’t place the smell, not sweaty BO, but not normal. I think is scared the bugs away. Wonder how long it lasts...

Rinse, repeat

Another day where I actually took the correct exit for work.  Some days, as I'm driving south on I95, I get to my exit and think "only another 1225 miles to Key West!"

There is a whole lot of BTDT going through my head right now. Please see this post, from almost exact 15 years ago (June 30, 2004).  I'm a big ball of nerves though.  But, it is what it is.  No getting out of it.  As one doctor said "well, the one thing is you can't do nothing" (pretty sure that was a statement on how long we'd been sitting on it - NOT MY FAULT!!).

I've got one long thing to write today, a meeting log for a 4-day meeting.  This most annoying, and the second most bureaucratic part of my job.  Maybe the most, but I think regulatory updates may take that spot.  Anyway, after I get this one, I'm leave for the day.  Kyle wants to go out to dinner, and our work schedules are such that we can't do that unless I take leave.  So I am.  I have too much leave as it is.  Which probably isn't a bad place to be, all things considered, right now.  I'm sitting on 6 months of sick leave and another 2.5 weeks of leave that is use-it-or-lose-it by the end of the year.

Let me tell you about that stoke thing

While I’m killing time, let me tell you all a story. I’ve briefly talking about how the diagnosis came about, but how about some details...

It all started March 17. St Patrick’s Day. About 3am... I woke up, and doing what most people do when they wake up at 3am, I swung my legs out of bed to head to the bathroom. When I stood up, I realized someone was weird, as I slowly sank the the floor. After a few minutes, I was able to crawl to the bathroom and continue about what I needed to do. Then I made my way back to bed, creeping along the vanity countertop, the the wall, until I got back to bed. I laid there for a awhile, noting the my left arm wouldn’t move. I then did the next most logical thing, grabbed my phone and googled “early symptoms of ALS.” Content that stroke-like symptoms weren’t a symptom, and eventually, my arm started working again,  so I tried to go back to sleep.

I’m not an idiot, I was pretty sure what was happening. I watched ER. I knew I had 2 hours to get to a stroke center because of TPA, but I went back to sleep anyway. Because, I am rather obstinate.

Got up the next morning and everything worked as it should. I thought that was weird, but maybe it was some weird sleep half-paralysis. Obviously it wasn’t a real stroke, because I was walking around just fine. Fast forward to about noon - it happened again. I was in the bathroom, and I stood up and noticed my left leg was numb. Luckily, it was the small bathroom, with a wall right there and the door within arms reach. So I was able to guide myself slowly, and in a controlled manner to the floor. Again, using the logical part of my brain, I grabbed my phone from the sink and texted Kyle that I needed a hand in the bathroom. Being the most excellent husband he is, he showed up a few minutes later with a roll of toilet paper.

Good assumption, Babe, but I just need a bit of help getting up off the floor.

He took one look at me and went to grab the phone. I screamed bloody murder. He did not listen to me (excellent husband marks falling) and called 911 anyway. I swear I would have grabbed that phone from him, if only someone would help me get up from the floor!  The 911 distracted has me repeat a few phases, then he hangs up. And starts to take the dog out so the paramedics can come without issue. Meanwhile I’M STILL ON THE FLOOR OF. THE. BATHROOM.  I can’t let anyone see me this way!!!!

Eventually, he helps me move from the bathroom to the couch 8 feet away. Paramedics arrive 2 minutes later (we live real close), and I proceed to fail about half their tests. Drat. Whee! Off we go to University hospital in downtown Baltimore. Their ED is right next to Baltimore Shock Trauma Center (this will become more relevant in a minute).

By the time we get there, I’m all better. But once you show up in an ambulance with stroke symptoms verified by the paramedics, you are getting the full treatment. Including my own nurse who wasn’t allowed to leave me unattended. About 30 minutes after I get there, it starts happening again. My private nurse goes to grab the doctor, who comes in, looks at me from the door, and says to get neuro ndown here NOW. The neuro resident gets there just in time for me to wave with my left hand and say “you missed it!” He looks at the other neurologist (who did not miss it), she nods, and he starts in about how that actually tells him something, and mentions the stuttering lacunae. While I, of course, google as soon as they leave the room. During this visit they tell me I’m not leaving anytime soon, and to tell my husband to bring me stuff to stay overnight. Great...

Now they are prepping me for an MRI. I taking off all my jewelry, and the nurse starts with the questions:
Pacemaker? No
c Any implants? No
Any metal in your body? No
Every been shot? No (giggle)
What about stabbed? No
Stabbed in the eye? Big no on that one. We have a laugh about being in downtown Baltimore, next to shock trauma.


So I’m off to the MRI, or maybe the CT, I don’t remember which was first. What I remember if that my ED doctor was actually in the same room as the radiology tech. They always show that on TV, but in the plethora of scans I’ve had in my life, I’ve never seen it. So, scan ends and they start debating if they are going to give me TPA. Best case, it fixes this. Worst case, it make the bleed worse. I consent, and they take me back down to the ED.


Now it gets really fun. The neuro resident is yelling at the nurse to start mixing the TPA. And then leave me with them while they are mixing it. He sticks his head back in and asks if it’s done yet, because he wanted it as soon as I came out of the mri. They say 5 minutes. He gets flustered and walks off. 3 minutes later, he comes back “STOP! We aren’t giving it.” The nurses stop and look confused. I just glance over and say “neurologists” with an eye roll. They agreed.

At this point, they decide to set me up with an EEG to look for seizures, and they are admitting me. By the way, it’s stuttered another 4 times by this point. Usually about 20 minutes each time.

About this time, they mention that they did a head and neck CT, and there was something big in my chest they would need to get a better look at later. I don’t even remember this from the ED, but Kyle does. So I guess it happened. They next 2 days are very boring, so I’m just going to skip to the conversation right before they released me.

The scene: Me in the hospital bed eating chicken fingers. I’ve got the neuro Chief Resident, a couple others, and a gaggle do inters/students surrounding me.

Chief resident: So you have an oncologist you see?
Me: it’s been 15 years. We had the “have a nice life” discussion about 5 years ago
CR: well, the chest CT we did last night definitely showed something in there. You should go see them.
Me: But it’s been 15 years! That’s so over. Not a thing anymore
CR: maybe, but go see oncology.
Me: but they always said 10 years for a blood cancer
CR: true, it could be several things, but go see oncology
Me: [redacted]

June 27th

Finally have a start date! In a bit of Alanis irony, it’s 3 days shy of the 15th anniversary of my first ever chemo.  I almost contemplated starting on July 1, just to make it full-on official, but the cycles are 21 days this time. And so chemo 2 would be my birthday. That gets a big nope.

I’ll be doing it at the clinic closer to my house. I like the other office better, because everything is better in Columbia vs Glen Burnie. But they don’t do chemo on Thursdays, and I like having the weekend to recover. The local place is much bigger and confuses me, but I have no excuse. I’m one of the younger folks there, by about 20 years. If they can figure it out, I can!

Speaking of, I had a brief flashback to the old man in the elevator from story 2 here.  This morning, I was one of the first people there, so I parked in one of the “patients only” parking spaces. Because, I’m a patient and there were a bunch on empty ones, plus, I was supposed to be done by 8:30. Usually I do leave the close spots of people who need them more. Anyway, as I was getting back into me car around 9:45, this old guy was glaring at me. Kyle says he was just a cranky old man who liked my car, but I just took it as you are too young to park there. To be here. Yes, yes I am 🤬. I also got  asked if I was in menopause yet. Nope. Thanks for the other reminder I’m too young for this shit.

So why was I there this morning getting asked about menopause (from the technician, not the old man)? I got all my prechemo stuff done for post chemo radiation. This makes me very nervous. I’m torn about it. One of the two consistencies from all the oncologists I’ve seen is that radiation works, and is the best guarantee to get that last cell this time. But it greatly increases me risk of breast or lung cancer. Or a heart attack. I feel it’s a case of kill me now or kill me later. I guess we will discuss it more after a few cycles. I think proton radiation would reduce the risks, but there was some reason that wasn’t the best option. I don’t remember now, but it made sense at the time. Something about aiming.

Radiation is such a weird thing for me. I’ve been exposed to a lot. I’ve probably had 2 dozen CT scans, and half a dozen PET scans in my life. Plus, growing up, there were all the jokes about my hometown. And yeah, there was the occasional radiation problem back home.  Years ago, I talked to another girl from Oak Ridge who had hodgkins. She was a couple of years younger than me, and I taught her to twirl (flags). She blamed her Hodgkins on oak ridge. Personally, I blame the stupid shit I did in college, like getting mono and burning furniture with all its FR chemicals. And sitting on said furniture while it was burning, breathing all that shit. Three of use from the fraternity have had hodgkins (one I knew, and one a few years after I graduated). Ask an oncologist and you’ll just get a shrug, but... now why now? I don’t even have a guess at that. We left one behind and it got pissed at me.

Kyle, on the other hand, keeps saying it doesn’t make sense because he’s the one who did all the stupid shit in his younger years. But, well, life’s a bitch and not fair. I drew the short straw. But, whatcha gonna do? We all have our shit to deal with.

Good news!

I had another PET scan today. My last one was April 1, so over 2 months ago. Since we haven’t started treatment, I was worried it had gotten bigger and/or spread. So the good news is it’s the exact same size and place as it was in April. Nothing new, and nothing bigger. Other than I guess it regrew the part that was cut out to biopsy. So yay! I’ll take it.

Follow up

Today was a good day! I got up at 6am so that I could make a 9am appointment in Alexandria, VA with my first oncologist. It went really well.

So, he walks in, glances at me, glances down at the papers in his hands, and looks back at me and says “I know you...” I did have to remind him of my history and why he knows me, but one we got passed that (and the fact my regular oncologist is the ex husband of the Dr K he knows), it went great.

Long story short, he totally agreed with my immunotherapy hesitations. Basically, why try something unproven when there are perfectly good, proven options.  And he grimaced when I said that ipi scares me. So, he gets that, too. And to be honest, he was trained at Hopkins, he knows everyone there, I totally expected him to be selling me on the Hopkins plan (which I could have used, too). But nope, he said that wasn’t right for me.

So, he was a bit conflicted about the exact cocktail. Definitely brentuximab, but there was a question about mixing it with drugs I’ve had before (which involves math to calculate how much of my lifetime dose I’ve had) or mixing with a new drug. But said either one is a good path. Plus radiation.

Where I am

Monday morning, I am calling JH back and will talk to them more about the trial. I’m not sold on it, but I’ll at least go in and talk more. I have major hesitations. I think mostly it boils down my thinking that the risks are higher than I need right now. 

But I also decided I’m going to go see my original oncologist. He was a lymphoma guy, he did his fellowship with Hopkins hematology. And so I want a tie breaker opinion. He’s only an hour away, so it’s not like it’s hard to see him. 

I’m really leaning toward the targeted chemo route. ORR is 93%, and it looks like it does provide a durable remission.

Everybody is so sold on immunotherapy being the great breakthrough, and it is. I get that. But it’s not without some serious risks, and I’m not sure they are right for me. Not that chemo doesn’t have risks, but, I’ve done that. I know them. And the options I’m looking at do not include treatment related death.

Recommendation

After 5 weeks of waiting, I finally got a treatment plan from Hopkins. I guess it was only 2.5 weeks of waiting to hear from Hopkins, plus the 2.5 weeks to get in.

Anyway, they invited me to come in a see if I qualify for their immunotherapy clinical trial. That was their best guess to treat me. They also said my best shot for a cure was radiation, but (paraphrased) I’ll be back in 15 years with a solid tumor.

I think I’ll go in next week for the testing to see if I fully qualify, but I’m really torn. The immunotherapy seems really promising, and it fairly well tolerated. Until it isn’t, and then it goes south very fast and badly. Like near fatal colitis or pneumonia. And it’s hard to predict. It’s also up to 34 3-week cycles. So up to two years!

I’ve done so much research on the other plan (brentuximab + Bendamustine). It was a solid plan, with excellent response rate, and minimal side effects. The Hopkins guy didn’t like that one, but he never said why. That would have been done by October (18 vs 102 weeks). I was ready to get that going weeks ago.

I’ve spent today reading everything I can on Nivolumab and Ipilimumab, and it’s not really reassuring me. Especially Ipilimumab. Scary stuff. It’s mostly used for melanoma.

Port #2

I had a port last time. The insertion surgery was horrible. You can read about toward the bottom of the June 2004 page.   This time was marginally better. I was out good before they started cutting. I’ve learned to ask for the motion sickness patch before any anesthesia, so I didn’t get carsick on the way home this time. Unfortunately, I still have 5 lbs of boob pulling on the incision site. But at least this doctor (or his female PA) understands this isn’t OTC pain killer, so I have fresh Percocet.

I went to work today, even though the surgery was yesterday and I probably could have used it as an excuse. I did have to raid the first aid kit for tylonol midday (bc I’m not taking Percocet at work!). But it wasn’t too bad.

I’ve sent messages to my Hopkins doctor asking for a time frame as to when my case will go up to their tumor board. But no response. I thought it was last week, or maybe this week. But we’ve heard nothing. So maybe next Tuesday? I wish someone would just give me a time line?  I’ve got most of my life on hold right now, waiting. I have plans I need to make, and really want to know when I will know something.

Last week, I went for my annual skin check. They sliced off a callous-type thing. Biopsy came back as keratosis. Dermatology considers it precancerous, and said about 1 in 100 turn into squamous cell carcinoma. She was trying to be so upbeat on the phone downplaying the odds while also saying they need to do a bit more to it. I think is kind of surprised her by just laughing. 1% chance? Ha! I’m dealing with coming up in the 0.66% chance in the Hodgkin’s world right now. 1% seems pretty high to me. She said it has to wait a few weeks anyway, and could go a month or more. So once the rest of things gets sorted out and scheduled, that’ll be on the list. Good times!

A few thoughts on cancer terminology

Apparently today is Nation Cancer Survivor Day. Who knew? Between that, and some tweets I’ve been reading about the annual ASCO conference, I’m deep in my head about cancer terminology, mostly of the non-medical variety.

Survivor - I’ve never bought into that term. Cancer was a phase in my life way back then, but just a blip in this thing we call life. I think back to that phase, and I think about it as “welcome to thirty-something.” I think back to NYE 2004, when I was toasting the new year with several of my closest friends. Within 6 months, one was pregnant, two couples divorced or divorcing, and then me with cancer. Yeah, welcome to thirty-something. Yet we are all survivors - we are all still here! When it comes down to it, to quote Melodime:
the days you're living could be very few 
and you don't know when it is time for you 
to kiss the clock and finish breathing 

So look around, and everyone you see survived something. Maybe it was there a-hole ex, maybe it was giving birth, maybe it was just surviving their daily commute - because statistically, that’s a more likely thing to kill us than cancer. Actually keeping a baby alive the first year is a pretty huge accomplishment, as my job involved all the ways that could go wrong. So why do I deserve a day more than anyone else?

Warrior (n): “person engaged or experienced in warfare” 
 I really am not a fan of the warrior mythology. First, because I’m a pacifist at heart, so I don’t like to think of myself at “war.”  But I think it puts us up on a pedestal and it really hard to live up too being a “warrior” when you can hardly get out of bed. Or the sight of food makes you nauseous. If these words are meant to make us feel better, I’m not sure how that works.

A corollary to the warrior term is all the cancer gear. I see people posting picture of their kicking cancer t-shirts or other “warrior” shirts, and I just can’t. Obviously, to each their own, but that is not me. The closet I got is a shirt that says “Not Today.” And it’s purple, because purple is awesome, not because someone decided it’s the hodgkins ribbon color (and a couple other cancers, too). But I did also pick up a new crazy Hawaiian shirt. This one has flamingos. I wore Hawaiian shirts to chemo last time. They are fun and allow for easy port access.  So, don’t buy my any cool cancer shirts, but crazy Hawaiian shirts are ok.

Strength - OMG, if I had $1 for everyone who has been “amazed by my strength,” I’m not sure I’d still need a job. I don’t feel strong. In fact, right now I feel kind of weak, between probably not eating enough and this annoying pain behind my sternum when I breath deeply. Maybe it’s innate in me, but I’m just someone who has always rolled up my sleeve and done what needed to be done. I’m not sure what other choice I have here?  I’m about to get a bit of circular logic here about fighting,  but seriously, what else would I do?  People amazed at someone’s strength sell themself short,  because if the tables were turned, I bet they would just do what needed to be done, too. We all have it in us. I am not any better than anyone else. You are not weaker than anyone else. We all just want to stay this side o the rose bush a little longer (or hopefully,  a lot!)

Cure - I read something earlier with the following quote “Even the word 'cure' has a slippery definition. Does it mean being cancer-free for five years? Ten?” This one really hits me hard. I remember Dr. Aksentiejvich telling me that because it was a blood cancer, cure was more like 10 years, instead of 5, like most solid tumors. That is something I remembered well, 10 years! I even debated with my current oncologist back in 2014 about it. I wanted to be done, and I convinced him to release me from follow up. Do I think that would have made a difference now? No. This was found with a CT scan for other reasons, and he wouldn’t have been ordering annual CTs at 15 years.

Anyway, so I guess I was never cured. It’s like that one cell must have gotten left behind. And yes, per the pathology, it is a reoccurrence of a “remote” history. I guess this is why I can never donate blood. Lifetime ineligible based on having lymphoma as an adult. So, is there a cure? Will I ever been cured? Or did I just manage to get 15 years of progression free survival? And can I hope for more this time?

New pathology report

So with the Hopkins consult, they also wanted to see the biopsy slides to confirm the diagnosis. Something about “there being other things that look a lot like Hodgkin's.”

Report finally came back. Top notch, well published Hopkins pathologist. “Nodular sclerosis classical Hodgkin lymphoma.”

So exactly the same. Double officially recurrent disease, exact same type, exact same spot (right paratraceal) as before.