My breasts are unremarkable

Wednesday, November 18, 2020. I know. I know. It’s been awhile. The state of my brain on chemo just hasn’t had the energy, creativity, or motivation to write. It seems like every day is just like the one before—Groundhog’s Day syndrome. Most days, the only things that change are the clothes I wear and what I eat. That’s in my own little bubble of a world, of course. The world at large…well that’s a conversation for a different blog and with someone who has a helluva lot more energy than me.

This is my 19th “chemo on” week. I’ve been taking Xeloda since March 21 of this year. The regimen is 7 days on, two 500 mg tablets twice a day. For me that’s 8:30 in the morning and 8:30 at night. With this medication you need to eat something within half an hour of the dose. I have a FitBit smart watch. During my “on” weeks, I have the alarms set for 8:00a (eat) and 8:30a (meds). Twelve hours later I repeat the routine when my arm alarm vibrates at 8:00p (eat) and 8:30p (meds). It’s annoying, but it works. In the beginning, I used to wear my watch even on my off weeks. You know how these smart watches are. It can check your pulse, monitor your sleep patterns, use Bluetooth to listen to Pandora, alert you when your phone gets a new text message…the features and options go on and on. All in this little over 1-inch square, smart-ass device. Eek! However, for the last few months, when it is my chemo off week, I take the damn thing off. I’m so over all of it. Exhausted. Spent. Done.

Instead of letting myself focus on all that’s wrong or could be wrong, I have become more devoted to doing some sort of meditation every day. I used to meditate off and on in the past, and it was always beneficial for me mentally and emotionally. I liked it, but like most things I missed a practice or two and then just stopped. I decided to begin practicing again when my next MRI was scheduled for November 17 (yes, yesterday). I have a bit of PTSD from that bad MRI experience I had in 2019 . There’s anxiety attached to the procedure, and I thought a more dedicated meditation routine might help.

I started out listening to one of Calm‘s guided meditations on my tablet, or I would listen to sleep meditation sounds at bedtime. Then I discovered Jeff Warren’s 30-day course called “How to Meditate” on the Calm app. From the first 10-minute session it felt like I’d made a new friend. Typically I would listen/practice in the late evening. It felt like a treat I gave myself every day. The kind of self-medication that’s good for you. Although I’ve finished the course, I go back and revisit my favorites. It’s like making sure I have all my tools available just in case I need some extra attention or repair.

As I said, most of my days mirror one another. Yesterday, however, was not one of my mirror days, except that it is a “chemo on” week. Making the long trip to UCSF Mission Bay to have a blood draw, followed by a bilateral breast MRI, followed by a meeting with Dr. Rugo had me exhausted before we ever pulled out of the garage.

UCSF Mission Bay, San Francisco

Last year, when we were driving to UCSF every Tuesday for chemo treatments, it would inevitably be raining…hard. Really hard. Like zero visibility hard. So yesterday, as we pulled onto the road to begin our 3-hour journey, it seemed almost poetic that it was a Tuesday and raining.

The good news was that on this visit Steve was able to accompany me to each of my appointments. Nine months ago, the COVID thing had restricted him from even coming in the facility. Three months ago he could get screened and get a pass to use the bathroom or go to the cafeteria. Yesterday it was unbelievably comforting to come out of the blood lab and see him sitting there waiting for me. When he escorted me to the second floor to check in for the MRI he gave me a big hug when they called me in. Well, that just threw a soothing warm blanket on the anxiety I was feeling. But best of all, when I walked into the waiting area for my appointment with Rugo and he was there, my heart was smiling. And that smile got even bigger when he was allowed to come with me for my examination and meeting with Dr. Rugo. It felt like a privilege, something I will never take for granted again.

Even though having Steve at my side, instead of waiting in the car for hours, was so far beyond awesome, the best moments of the day were yet to come.

First, all of my blood work was perfect. My red blood count was a little low, which accounts for my chronic fatigue. The Xeloda just has not kicked my immune system’s ass as hard as the more hard core chemicals (Adriamycin, Taxol, and Carboplatin) did—even though I’ve been taking it every day, every other week since March. That’s 18+ “on-weeks” that I’ve taken 2000 mg of oral chemo tablets, twice a day. The only time I didn’t was during my five week stint of radiation. My doses were cut in half on the three “chemo on” weeks that fell within that period. So far I’ve ingested 244,000 mg of this cancer destroying poison…and have never missed a dose.

The MRI went really smoothly. I drew on all the meditation tools Jeff gave me as well as a tiny bit of anti-anxiety medication. In the 45 minutes I was in the machine, I never felt overwhelmed by the noise or having to lie motionless. Most of the time I was able to keep my mind calm and focused on my breath. There were actually a couple times that I came close to nodding off! I was even successful at simply noticing the bombardment of sounds that surrounded me with curiosity rather than letting them overwhelm. The meditation (and the medication) really helped.

Me and Dr. Rugo

After a nearly hour delay, we met with Dr. Rugo and someone new to me, a lovely young woman named Dr. Hufford, a UCSF fellow. Dr. Hufford examined me first, then a bit later Dr. Rugo came in and also gave me a quick examination. We talked a bit about the small mass that we discovered just before my last visit, and agreed to keep an eye on it. Then it was time to get the BIG question of the day answered, when can I stop taking the Xeloda? It was such a relief to hear her say that all I had to do was finish this week and the treatment was complete. Sweet! So sweet I could taste it. We also asked about the MRI results, but the “wet report” wasn’t available yet. So we headed home with a lingering question. Was I clear?

Finally, nearly an hour into our long journey home, my smart watch buzzed that I had a new message in MyChart. So I got on my tablet and logged in. There was a message from Dr. Rugo’s office. “MRI looked good! Just released it to you.” I clicked on the link and pulled up the MRI report.

“RIGHT Breast: Post surgical scarring of the right breast. No abnormal area of enhancement or other MRI features of malignancy identified.

LEFT Breast: No abnormal areas of enhancement or other MRI features of malignancy identified.

OTHER: Post surgical change of the right axilla. Otherwise the axillae, skin and chest wall structures appear unremarkable.”

In other words, my breasts are unremarkable. Isn’t that fantastic?

Tomorrow belongs to those who can hear it coming. —David Bowie

What would Ruth do?

Sunday, September 20, 2020. This has been a bit of a scary week. Hell, it’s been a scary year what with the upcoming election, the pandemic, the fires and our evacuation, the poor air quality due to smoke and always being on guard for whatever’s coming next.

Then yesterday, as I was on my way to post about the next scary thing, we heard the saddest news—Ruth Bader Ginsburg died.

I was caught off guard at how hard RGB’s passing pummeled my heart. I was quiet and moody all day. I could barely get motivated enough to get off the couch to get a drink of water or eat. This tiny figure was not just a giant among women, but of us all. I can’t imagine where we would be now if she had not paved the way for so many.

And I was angry, because the media didn’t have the balls or integrity to give us just one day to mourn her passing and reflect on how incredible her life was. How impactful her presence was in this world. Within minutes it was all about how her passing would affect the current political state of affairs, and all the bullshit and posturing and ugliness we are forced to endure 24/7. The lack of respect was disgusting.

But today we watched CBS News Sunday Morning, and their coverage of RBG’s passing was all about this inspiring woman with none of the BS. They highlighted how she fought her battles with cancer with such dignity, strength, and fearlessness. That’s when the tears came, and I truly realized what an enormous void there is in our world without her in it.

Thank you for all you gave. Rest in peace, Ruth Bader Ginsburg.

Of course the one thing I have in common with Supreme Court Justice Ginsburg is cancer. I could relate to her battle on a deeply personal level.

Cancer is always foremost on my mind. I am always on guard, keeping a watchful eye for its return. So on Wednesday when I found an unusual lump near my right armpit, I immediately suspected the worst. It felt like a betrayal to find this new lump when I’ve been on my latest chemo treatment for the last 7 months and will continue to be through the month of November. As luck would have it, I already had an in-person appointment with Dr. Rugo scheduled the next day.

I was surprised at the level of anxiety finding this new lump gave me. It’s out of character for me to have a discovery like that affect me with such overwhelming force. I’ve always said, “It’s nothing until they tell you it’s something.” It’s just that all my nothings have always morphed into something.

Even though he couldn’t go into the appointment with me, Steve drove. It was comforting not making the long drive alone, caught up in my thoughts. I was so grateful to have him at my side. Even so, I was really nervous all the way to UCSF.

I was scheduled to have labs done at 9a and see Rugo at 9:30. So once my bloodwork was done, I headed across the way to my appointment. Luckily there wasn’t a long wait, and it was business as usual—check my weight, oxygen level, temperature, pulse and blood pressure. I have never had high blood pressure…ever. So I was shocked when the nurse remarked that my blood pressure was a little high. I told her that was weird because it’s never high. So she took it again. It was even higher. I then confessed I’d found a lump the day before and was feeling a bit anxious. She said she understood and that either Dr. Rugo or her Nurse Practitioner would be in soon.

As I waited, I listened to three different guided meditations, hoping to bring my pulse rate down. But my heart continued racing, and it never dipped below 80. My normal is 62. Shit!

Emily, Rugo’s Nurse Practitioner, questioned and examined me first. Of course, the lump was an unexpected element for what was meant to be a routine visit. We also talked about my Xeloda side-effects which I’m happy to say are manageable, the worst being the extreme fatigue that never goes away. The other being my foggy brain, which is the main reason I rarely post anything these days. I just don’t have the concentration or stamina.

Anyway, then Dr. Rugo came in and examined me. She measured the lump, and said she wanted me to get a mammogram, an ultrasound, and a fine needle aspiration. Emily said she would talk to imaging and try to get me in right away. I was also examined by another nurse practitioner Susie, who assists my surgeon Dr. Ewing. She was sweet and reassured me that whatever this was they would take care of me and I’d be fine.

So that’s what happened. In record time I had a mammogram followed by an ultrasound. Here are the results:

There are no mammographic features of malignancy.

Ultrasound Findings:
Targeted ultrasound performed by physician. No sonographic correlate at site of palpable bulge indicated by patient. Normal appearing pectoral muscle is noted in this location.
Nearby normal appearing lymph node.

IMPRESSION:
Right breast: Benign (BI-RADS 2).
Left breast: Negative (BI-RADS 1).

YES! ! ! ! ! ! ! !

Is the lump still there? Yes, it is. Does that make me a little uneasy? Yes, it does. But, I just have to remind myself whatever it is, it’s benign. So, I’ll just keep monitoring it for any changes, and hopefully it will eventually disappear.

As my journey continues and I reach any unexpected hurdles, I’ll try to stay calm, look into my heart as I think of my super-hero, and ask, “What would Ruth do?”

When you reach the end of your rope, tie a knot in it and hang on. —Franklin D. Roosevelt

Strong?

Wednesday, July 15, 2020. I’ve been told I’m strong. My mom just said it again the other day. Throughout this entire journey that’s the one word that comes up over and over again. “You’re so strong.” “I can’t believe how strong you are.” When I hear that word, the voice in my head always wonders, “What does that mean? Strong. I just don’t see myself that way.” That being said, I’m not the type of person who melts into a puddle on the floor, rolling around crying, “why me? why me? what have I done to deserve this?” Feeling sorry for myself just seems like one more burden I don’t have the energy to deal with.

The truth is, I don’t feel strong. I feel tired. I feel numb. More than that, I simply feel like this is the hand I’ve been dealt. I didn’t put myself in harm’s way and now I have cancer. I didn’t have someone cough on me and caught cancer. Yes, I have cancer, but it’s not my fault. It’s no one’s fault. It just is. That leaves me navigating through the muck of it all. I am forced to forge ahead for as long as it takes. Do I like it? No. Do I feel strong? No. I’m just putting one foot in front of the other and trying not to fall flat on my face.

I don’t see any of it as being strong. I see it as a constant fight to survive a disease that ultimately wants me to stay alive, too. Let’s be honest, as long as I live, it can live. If I die, well…no more cancer. It’s not like it can jump out of me and into someone else. Right? Cancer isn’t trying to kill me. It just happens to like living off the parts of me that are also necessary for me to live…but as we all know, that’s not sustainable.

So where does that leave me at this point in time? I had a video visit with Dr. Rugo and she wants me to continue with the oral chemo until the end of November. Ugh. I was hoping I’d be done mid-October. So I can look forward to being abnormally fatigued for several more months. Yippee. There is some good news. Because I seem to be tolerating the twice-a-day-for-7-days poisoning with manageable side effects and my bloodwork has been consistently good, the chemo dosage was not increased as I had anticipated. Yippee, and I mean it. Also rather than getting labs done every other week, she increased the time in-between pokes to every other month! Super yippee!

A small price to pay for eventually getting my life back.

I’ll get through this. We all will. Thanks for having my back and thinking of me once in awhile and sending all that loving, healing energy my way. I truly feel it and appreciate it every day. If there is any part of me that is strong, it’s because you feed me and make me that way.

The best way out is always through. —Robert Frost