Liza on Leave

I want to let you know where we are. The current chemotherapy has stopped working, and the medical team has nothing further on the menu to offer us. We will continue comfort care.

There is research out there that once chemo stops working, a terminal cancer patient has about the same lifespan with it as without it. There is also research out there that trying to fix your hand by banging on it with a hammer isn’t very bright. We’ve decided to go with the research.

Please do not construe this move as a decision to throw in the towel. It definitely is not. I will fight as long as I have a single viable hour to spend with the redhead, or a way to add some (perceived) value to anyone’s life.

And I think that’s it for now. There’s way too much to say, and everything I know to say wouldn’t be enough anyway. We still have a little bit of time, Argentina. The redhead and I will make it last as long as we can.

Love you lots, my friends. Thank you from the bottom of our hearts.

I’m in! Oh thank heaven, I’m in!

Yesterday my numbers checkout out fine, and the medical team has recommenced my chemo. I will be getting a weekly Monday or Tuesday dose of the chemo drug “Topotecan,” which I might take more seriously if it didn’t sound like a tropical bird rather than a dangerous poison.

But be that as it may, the weekly dose is much better than either (a) no chemo at all, which would not bode well, or (b) the daily dose in February that put me into the hospital and tried to kill me.

So thank you from the bottom of my heart for the thoughts and prayers, and let’s be careful out there.

Well friends, unfortunately my health has taken a turn south – and I don’t mean towards Galveston for a nice cruise. I have been loving my extension of lifetime on this beautiful planet, thanks to my medical team, the chemo, and yes the Beelzebub. I had even qualified for a promising new drug trial. Then wham! – back in the hospital for two bleeping weeks.

It’s been almost a week now since I got home. With the help of dear friends, I have been able to get some critical things done – like drag my sorry butt to church, get a bunch of built-up errands done, and fulfill some important personal promises. After getting to sleep in my own bed, I am feeling more or less humanoid. Ironically, as far as hardware goes, I am looking more like the Bionic Woman.

SKIP THIS PARAGRAPH IF YOU ARE SQUEAMISH. For example, I now have a “tunneled central line.” It’s a cousin to the port I once had. The redhead accesses it twice a day to give me my meds. In the event I qualify for more chemo (and we won’t find that out until Tuesday), the chemo and pre-medications will be much easier to receive with this setup rather than depending on an IV.

CONTINUE TO SKIP. And not needing to depend on an IV is excellent news, by the way. The docs found a deep vein thrombosis in my arm, so I’m down one usable appendage.

CONTINUE TO SKIP. Also, I now have a “gastrostomy tube.” I’m trying not to panic about that. The tube’s purpose is not to feed me (at least for now), but rather to aid my digestive system in processing the nutrition I am able to take in myself. I have developed a “tumor ileus.” That is, a cancer tumor is interfering with my upper intestine by kinking or partially blocking it. After some basic research, I have had a change of mind and heart about feeding tubes in general. It would be entirely possible for my digestive system to continue to jack me up, while the rest of me – brain, heart, lungs, mobility, etc. – continues to chug along reasonably functionally and even well.

AND CONTINUE TO SKIP IF YOU DON’T LIKE SOPHOMORIC HUMOR. The most awesome part about the gastrostomy tube, however, is that it has given me a brand new skill. I can now fart from my stomach. The reason I know this is that I just did it. [Giggle.]

The redhead and I continue to appreciate your friendship and support. Thank you.

Just call me Cleopatra, ‘cause I’ve been the Queen of Denial.

For a while now, I have felt so good – so practically normal – that I could pretend to myself that I’m healthy, and that this whole cancer thing is really just a mistake. (“Oh my goodness, I’m so sorry, we got your medical records confused – whoops!”)

The vacation from reality has been nice, I have to say. Thank you for helping me enjoy it. The vacation, however, has come to a crashing end. IF YOU PREFER CLEOPATRA’S WORLD, READ NO FURTHER.

Because included on Beelzebub’s new side effect hit list, we now have . . .

• Shingles! Yeah, baby, all over my torso, and they hurt just as much as people say. If you had chicken pox as a child, please run, don’t walk, to your nearest pharmacy for the Shingrix vaccine. For me, shingles then led to . . .
• Neutropenia! – which sounds like a small musical instrument, possibly related to the calliope or autoharp, but which is actually an immune system malfunction. Which led to . . .
• Shots to stimulate my bone marrow! Good times. Followed by . . .
• A full day at the E.D. with pneumonia symptoms! – which turned out to be respiratory syncytial virus, or “RSV” as we in the inner circle call it. And which now means a stretch in bed with a crate of kleenex.

But all this pales in comparison to a potential game-changer. My new CT scan came back with a radiology report of brand new tumors. The report meant that my current second-line treatment of Doxil/Beelzebub, like its predecessor first-line treatment of Taxol/Carboplatin, was no longer effective and would be terminated. And that would be one more giant step down the path to “I’m sorry, there’s nothing further we can do.”

But law school turns out to have been worth it after all. I blurted out some questions. Was it possible that this CT or the prior one was misread? I mean, we’re talking teeny tiny spots on a blurry x-ray here. Did the same radiologist read both? Was it someone seriously experienced in ovarian cancer? Was it reasonable to get a second radiology opinion? My medical team said “absolutely.” Well, hallelujah, the second reading came back and was vetted. It showed no new tumors, and only a 10% growth of old tumors. A reading of less than 20% growth classifies me as having “stable disease.” And that means the Doxil/Beelzebub is working well enough to extend my life, so I get to keep it.

Because better the Beelzebub you know, right?

More importantly, even with the best of medical teams, it pays to advocate and question.

I hope you enjoyed this beautiful Christmas Day and Hanukkah in good health. Happy holidays and much love from the redhead and yours truly, who henceforth shall not be known as Cleopatra.

I am loving my hair – mainly because I have some, but also because it’s grown enough to look intentional, and yet I can still comb it with a towel. Oddly, it is growing in much thicker and a much darker brown. My phone still doesn’t recognize me.

Tomorrow morning I have chemo, and I also start getting an infusion of an immunotherapy drug called Bevacizumab. I can’t pronounce that, so I just call it Beelzebub.

Beelzebub works by stopping the formation of new blood vessels necessary for tumor growth. It’s side effects, though, are seriously evil. I won’t go into them now, but if you can lob a good thought in my general direction tomorrow morning, I’d be grateful. Who knows, maybe I have met my quota of side effects, and Beelzebub will leave me alone. If I sound a tad nervous, it’s because I am.

It has been a wonderful summer, hasn’t it? – lovely and hot and slow and fabulous. The redhead and I had a great Labor Day weekend, and we hope you did, too.

I have had so much chemo at this point that I think my pee is radioactive. The toilet has started glowing in the dark.

Actually, chemo is a lot like the T-Rex in the Jurassic Park movie. If you recall, the T-Rex couldn’t detect its prey unless the prey moved – and then the T-Rex chomped. Well, chemotherapy drugs hunt and destroy cells that “move” by changing rapidly. Conveniently, that includes cancer cells and tumors. Inconveniently, it also includes normal healthy cells that are merely going about their business of growing, healing, or replicating. You gotta feel for those little guys. There they are, jaunting down the protoplasm path all happy that they’re doing great work, and then out of nowhere: Chomped by Chemo-Rex!

Apparently, red blood cells are particularly chompable. In any event, my veins were a couple of quarts low again, and my energy level has been right down there with a comatose armadillo. So yesterday the medical team topped me up with a nice transfusion. This time, I got smart, though. I asked for the blood of a triathlete, or at least a really good home cook. We shall see.

But lo and behold, here we are at the end of primary treatment for Stage IV ovarian cancer. Next week there will be test results and a medical team meeting that will determine my future, or (forgive the gallows humor) lack thereof. It has now been seven months of dense-dose chemotherapy, interspersed with an additional month’s worth of surgery and other random procedures. Without that treatment, my number would have been up before Christmas, so I am sincerely grateful for every minute of it.

However, I don’t mind telling you that the redhead and I are on pins and needles, hoping for encouraging news next week.

And speaking of hope, I hope you are enjoying these first days of spring. Bluebonnet Season is always my favorite time of year.

All is well. Checking in at Zale Lipshy University Hospital for a quick blood transfusion and CT scan.

More later.

Quick update for some great news! The CA-125 ovarian cancer marker test result is in, and it’s again in the normal range. That makes three good results in a row. If I get one more “normal” in three weeks’ time, folks, I will officially be in remission.

Hard to believe it’s so close.

There is an asterisk, of course. There’s always an asterisk. The normal range is 0-35. For those keeping score, the actual number this time was 16.5, which is a hair in the wrong direction from the previous 15.1. In short, this was not the continuing downward-skipping trend to single digits that we were hoping to see. The competition junkie in me is slightly and very ridiculously miffed.

But this is obviously not a game. Remission has been the only goal of the road that began way back in August. And remission is within reach.

So grateful.

Update from the redhead: In pre-op now, scheduled to go in around 10. It will likely be a long surgery (5-6 hours), so don’t be alarmed if we don’t post any updates for a while. As Alan said, right now, no news is good news. (9:20 am)

Update from the redhead: “Liza just taken to surgery. Smiling & doing well with a little pre-op cocktail on board. Surgeon said about six hours.” (11:05 am)

Update: Surgery in progress. Liza is stable with a few more hours to go. (2:05 pm)

Late-breaking news: Stable and coming out of surgery! (6:30 pm)

Unbelievably good news, y’all: Liza is awake and extubated and doing well!!!! Hallelujah!!! (6:43 pm)

It’s a beautiful day today in Dallas – 65 degrees and sunny. Truly gorgeous. This past week has been rainy and cold, which suited me just fine for a low-key flannel-pajama bed-to-couch double-dose recovery kind of week.

As you may recall, I had to skip one chemo session while in the hospital for the mediport infection, and now I see that two new sessions have been added to my chemotherapy schedule in its place. Apparently, oncologists have questionable math skills.

However, they have given me an official surgery date, which is both productive and heartening: Tuesday, November 13. More about that later, and I promise to warn you before discussing anything gory.

Hope you are enjoying this glorious day!

The most surreal phrase I have heard to date in this process has not been “you have cancer.” No, the most surreal phrase has been “you need to keep your weight up.” This is an alien concept, but a lifetime of experience is finally paying off. I may be the only person in the history of humankind to actually gain a pound or two on chemotherapy.

This past week a new side effect appeared. The good doctors at the UTSW dermatology clinic and immunology department diagnosed it as “hand and foot syndrome.” My first thought was wow, that syndrome needs a better name. So I have rechristened it Bilateral Unspecified Magenta Macro Extremity Response, or BUMMER. Basically, BUMMER consists of large patches of vivid fuchsia-red blistery skin covering the hands and feet. The patches are quite painful to the touch – so painful, in fact, that I may start concealed-carrying for the sole purpose of warning people off if they get anywhere near my appendages. Luckily, the pain is easily managed with Tramadol, a prescription painkiller. I have so far in this process steadfastly resisted taking anything stronger than Tylenol, but I’m not a crazy person here.

In other status, I still have some hair (#combover). Also, I have an appointment with the surgeon tomorrow to discuss surgery timing and logistics. There are at least three more weeks of chemo to complete, so my earliest date with the O.R. would be in early November.

All is well and on track. Have a wonderful week! Sending lots of love and gratitude your way.

Well I don’t mind telling you that this double-dose week has well and truly kicked my butt. Luckily, I found a whole new season of the Great British Baking Show to binge. I love that show. Nothing bad happens. The contestants help each other out. Drama is generated by watching things bake. They say “puff pastry” in reverential tones (and I won’t even get into “rough puff”). I am saving the final for later today. Everyone will cry and congratulate everyone else, and then have a nice cup of tea.

It was a fully obstructive clot of the freakin’ jugular vein, and I don’t mind telling you that the instant they finished setting up the heparin drip and hooking up the monitors, the redhead and I pulled out some paper and started planning my funeral. However, the score at this point is Modern Medicine – 1, Clot – 0. I was visited yesterday morning by squadrons of specialists with their residents and fellows in tow, just like on TV. The upshot is that with the massive heparin infusion, blood flow was sufficiently restored; hence, vascular surgery was off the table (sorry for pun); injectable blood thinners will continue to dissolve the clot over time; the mediport is still viable; hence — and most importantly — chemo will not be interrupted. And during these consultations by highly learned medical professionals, I learned many great new Scrabble words.

Plus, there is actually an upside, and bear with me on this. The dastardly Clot was formed in part by the propensity of certain versions of peritoneal cancer to randomly coagulate blood and thus form clots. We know now that I have a version that does that! It’s sort of like being grateful you found that termite hill in the side yard, because now you know to treat the whole house. In any event — and if you don’t want to be grossed out, STOP READING NOW — I will be self-injecting blood thinners into my stomach twice a day for about 6 months to keep the clots at bay. Eww and ouch and say whaaat and #imalawyerjimnotapincushion. But I guess it’s good to learn new skills.

People have asked why, since I am married to a doctor, that my husband doesn’t just do the shots for me. And we considered that. After some contemplation, I decided that the image of the love of my life coming at me with a needle twice a day is not something I want to see. Bit of a romance killer.

Drama today. Blood clot related to mediport. Great care in ED, now admitted to Clements and on IV blood thinners overnight. Sigh. I knew this seemed too easy.

I am a Central Texas girl. When someone tells me I will need to pack a snack for chemo, my first thought is to take a mayonnaise sandwich. For those of you not from Central Texas, a mayonnaise sandwich is Miracle Whip and bread and that’s it. So I’m sitting there in chemo, and no sooner had I broken out my mayonnaise sandwich — I mean, within seconds — than the cancer nutritionist strolls into the room for my nutrition consult. I was so busted.

But wow what resources UTSW provides. In addition to the nutrition consult, I was visited by chemo nurses with much info on what to expect; by the chaplain (Tammy, who is an absolute sweetheart); and by . . . wait for it . . . a music therapist! UTSW provides music therapy to its chemo patients.

I am definitely in the right place.

The first chemo session went well yesterday. They put you in a recliner, and there’s a TV on the wall. It’s a lot like going to the nail salon, except the chemo technicians are far less judgmental — not a single “tsk” or eyeroll at the condition of my cuticles.

Earlier that morning, the wonderful folks at Interventional Radiology, at UTSW Clements Hospital (shout-out to Dino), installed my mediport device.  The device is implanted internally.  From yesterday on, all blood draws, IVs, and chemo will be accomplished using the mediport.  I happily consented to one 30-minute sedated procedure (and 48 hours without a shower) in exchange for many dozens of a la carte bloodwork sticks and IV hole-punching.