Hello, hello. Hope everyone is well and sheltering in place!
I’ve been self-isolating since returning from Sydney. That was a MONTH ago! I’m getting a little stir crazy, but it could be a lot worse … needed groceries are delivered regularly … my dear housemate Amechi gets me the groceries I can’t find online (like toilet paper!) … the drive-thru Walgreens provides an exciting outing every week or so … I have two cats to keep me company … and, of course, thank GOD for all the memes!
I’ve been sewing a little too. Made a super cute cat cozy …
But the cats are boycotting it. Maybe I could turn it into a hat.
Made a super cute mask! Which went perfectly with the outfit I wore to Dana Farber on Thursday!
The DF appointment was a month overdue because of (1) my trip to Australia, and (2) COVID-19. This coronavirus is complicating a lot of things. Anyway, my tumor marker and liver numbers were all good! Whew! So I’m thinking, I’ve battled diabetes for almost 50 years, and prevailed. I’ve battled cancer for 15 years, and survived. If I die because I frickin’ touch my face I’m going to be pissed.
OMG, look! Merlin decided the cozy was cozy.
All is well. Thank you Merlin! Cleo, we’ll talk later.
Let’s see if today, Friday, I can write at 10:30 PM EST? Times zones are still a little muddled in my head.
I got back Monday night from Sydney! Australia! Never thought I’d visit down under, but my daughter is studying abroad for a semester, and she had a week break from classes, so, off I went. The travel was strenuous to say the least — I flew cattle class and flights were canceled two different times, so lots of airport shuffling. Nevertheless, I made it! When I arrived at 8:00 in the morning my daughter declared that she would keep me awake all day to help with my adjustment to Sydney time!!! (It actually did help.) We traipsed all over town – Chippendale, Spice Alley, Bondi Beach, Tamarama Beach, and Bronte Beach (walking in between), many metro stations, buses, and trains, and finally Potts Point where we checked in to my AirBnb and went grocery shopping.
AirBnbs are hit or miss – I’ll leave it at that.
By day 5 we moved to a hotel in The Rocks section of Sydney — nice change, and I’ll leave it at that.
Sydney is AWESOME! That one word sums up the trip.
On day 9 it was time to head home. Before I left for Australia there was some attention being given to the ‘novel Coronavirus’, but certainly not the craziness that greeted me when I returned.
Now, back in Providence, it is suggested that anyone who has traveled internationally in the last two weeks should self-quarantine for 14 days. Well, sure, okay. Roger! I can do that! And yesterday I learned about social distancing — six feet is the ‘safe’ distance – 6 feet from anyone who might spread a virus TO you, or, get infected BY you. Roger! Got that too!
I’ve now used the drive thru to pick up Rx at my local pharmacy, and I’ve had 7 bags of groceries delivered to my front steps. Things could be worse, eh? Let’s hope it doesn’t get too much worse. The cancer medications I’m on deplete my white blood cell count to half of normal, and I also have diabetes as a (second) underlying condition. Oy – I’m in the high-risk group! So I’m trying really hard to not catch this bug.
Although, if ya think about it, Coronavirus is killing the aged and infirm. It’s not killing the young and promising amongst us. If we’ve got to have a virus that does some pruning of the human species, maybe this one’s not terrible? Having said that, I WOULD like to stick around for a while longer, even in my old and infirm state. : )
I am a BIG believer in Reduce/Reuse/Recycle. Waste of any kind makes me crazy.
Twice a month now (because my insurance company will only allow me a 14 day supply at a time) outrageously expensive medicine is delivered to me … via FedEx … signature required. The meds arrive in a nearly bullet-proof cardboard box, filled with wads of air-filled padding, surrounding a heavy-duty-zip-lock plastic bag. Inside the plastic bag there is a hard plastic medicine bottle containing my pills, which are each individually wrapped in cardboard and foil pouches. Quite like going thru a set of Russian Babushka dolls to retrieve my pills.
There’s not much I can do about all this packaging — other than reuse and recycle. Since the zip-lock plastic bags are AWESOMELY sturdy, they always get stowed in my kitchen drawer for later use. And while they are impressively sturdy they are also unfortunately branded with what looks like a skull and cross bones …
Now, I’m really used to this stuff by now, so the yellow caution warnings don’t bother me at all. I reuse the bags a lot. They are especially good for freezing things like yummy, homemade cookies.
Last week I stayed with my cousins in Boston and brought some lovely, leftover, coconut cake … in a sturdy (branded) plastic bag.
Last Monday was my first check in at Dana Farber since I started a new medicine routine four weeks earlier. The new drugs are (1) Everolimus (an mTOR inhibitor) which is meant to ‘enhance’ (2) Tamoxifen, the second drug. I’ve taken Tamoxifen before, and in my mind it sooooo did NOT do the job. It was my daily medicine for six years after the first cancer, and it was supposed to keep me from having a recurrence. Oy! Nonetheless, it is again in my morning pill organizer … … … responses to drugs can change, plus paired with an enhancer it is different.
For the Monday appointment I arrived with a written list of my new side effects: high blood sugar levels, mouth sores, red blotches on my face (yes aka acne), change in sense of taste (food that is, not style), depression, no tolerance for alcohol, abdominal discomfort, loss of hearing, and urgency to pee. EACH ONE of these side effects was difficult – combined, they made me feel feeble and geriatric. The last one, the urgency to pee, was particularly distressing. We’ve all seen the TV commercials about urgency to pee and incontinence, but no, no, no, no, no … not me. Really??? This was bad.
But I had to resign myself to this new stage of life. I bought a package of depends.
So on Monday I recited my list of side effects, wearing my inaugural adult diaper under my jeans, and Jen listened. When I got to the end she said, that one doesn’t sound like a side effect, maybe you’ve got a UTI. But I don’t have any pain. Ya don’t always have pain with a UTI, she said, and ordered a urine culture. Two days later, UTI confirmed! Woo hoo! I took the prescribed antibiotics for three days and, voila! No more pee scares! WOO HOO!
Oh! the simple joy of a UTI. And oh! the simple joy of stowing away my adult diapers in a far corner of my closet.
Yesterday was a Dana Farber day … first visit in over two months. MRI, CT scan, blood work, vitals, NP, MD, and CSW. Results were, well, not great and not terrible. Sort of … average.
My whole life has felt very average. I’m average height and weight. Average to good social skills. Average to good wits. Average to below average health (although, maybe a little above average health outcome given the handicaps). My home is average size, in an average size city, I drive an average car, etc etc etc. Average feels comfortable.
Blood work yesterday showed one tumor marker was up slightly, and one was down slightly. Righty! Scans showed that the cancer is growing. (‘Growing’ by the way, is never a good word in oncology.) The tumors are not growing rapidly, but nonetheless growing. Righty! Taken all together, this means it is time to switch to a new medicine; time to try to thwart this cancer with yet another whack-a-mole mallet. As soon as my insurance company okays the new drugs, I will start on a new combo of oral cancer meds. The docs and I also discussed two other options, both involving chemo and hair loss — for different reasons we all settled on this next step.
If you remember from an earlier post, I stopped drinking alcohol for the last two months, just to see if alcohol might be affecting my cancer. While one person (me) abstaining from alcohol for two months does not make a scientific study, it was an experiment I was interested in. So tonight I had a double scotch … and took a mental inventory of the FANTASTICALLY ABOVE AVERAGE friendships and joy I have in my life.
Tonight it felt like SOMETHING should be tacked on to this blog, but, not being in a writing mood, I decided a good ol’ hair update would be fine. Since my scalp has now produced a very workable amount of hair, I’m spending time in the bathroom gratefully fussing with it. The routine …
Half hour before shower, apply hair ‘mask’ and work the viscous, lovely smelling cream through hair with fingers.
Wait. (While waiting, a good portion of the thirty minutes will be spent washing the ‘mask’ off hands.)
Step in shower and wash hair. Because of the ‘mask’ it will take two or three washings. Follow with conditioner which soaks in for an additional five minutes … useful time which can be spent not on hair.
Step out of shower. Spray on ‘leave-in’ conditioner. Gently comb through.
Next, blow dry while pulling outwards with round brush (Pic 1). Try not to pull too many hairs from their follicles during this step … tricky.
Pic 1. After blow drying
Time for the formidable flat iron. Find it in the cabinet along with the burn protection glove that came with it . This thing is scary hot … do NOT clip your earlobe with it and do NOT get distracted nor dawdle. Yes, flat irons are scary, but they are, well, necessary since approx 2010 America. (Pic 2)Pic 2. After ironing.
Last but not least, the POMADE goes in … crack for (my) hair.
Pic 3. Pomaded.
Pic 3 shows resulting hair after all these many steps. Oh, and just a teeny touch of makeup (barely worth mentioning) on the adjoining face.
On Saturday I went to an all-day, informational event focused on metastatic breast cancer. There were researchers presenting the latest findings, nutritionists talking about food, therapists discussing coping, … all sorts of fun stuff! It was the third time I’ve attended this annual event. I’ve been living with MBC for 9 years now which is longer than many last, a point which became poignantly apparent. One fellow patient I chatted with said she was so encouraged to hear that I had survived so long … she was a newbie.
A month before my MBC diagnosis, my daughter was eleven, and she and I went on a trip to England. I rented a car to drive from London to Wales … the rental, of course, was a stick shift. I know how to drive a standard, but hadn’t in years, and I’d never driven one where the stick is in your LEFT hand. Never mind driving on the left and all. When we first set off, we went down a narrow street which ended on a very busy road. The British GPS voice said pleasantly, TURN RIGHT … making a right turn in England is of course like making a left turn here. I was looking at crossing two lanes of heavy traffic into another two lanes, while watching for buses in the bus lane, pedestrians on the sidewalks, and bicycles everywhere. I sat for a moment and said out loud, I can’t do this. A little voice from the backseat chirped up, YES YOU CAN, that’s what you always tell ME when I say I can’t do my math homework. Obviously I had no choice … six hours later we arrived in Llandudno.
For nine years I’ve doggedly remained positive … not because positivity extends life (it doesn’t) but because it makes life better. Of course, there are days when my mind thinks, ya know, I don’t have a lot of years left. Then my head says to my mind, yeah but we’re still talking in years, not weeks. My mind responds, maybe, but I’m not going to beat this disease, no one does. (Sometimes) my head replies, YES YOU CAN.
New plan: no more alcohol. I’m gonna test this plan until my next DF visit in November.
Since on Monday my tumor markers were up, even though only slightly up, it probably indicates my treatment is losing effectiveness … that’s been the rule in the past, once the trend changes from down to up, it’s not going back. Which means I will need to change meds again. Which s*#%*cks, because my body has been tolerating these meds really well and so far they’ve been doing their job.
I exercise religiously, eat healthfully, meditate daily, and have a fantastic support system. I figured the ONE place I could ‘cheat’ was drinking. Research shows that alcohol is not great for cancer, but since I’m not a heavy drinker, and because I love a good cocktail, I’ve been ignoring that particular data.
Tuesday, I called Aaron … come over for a last evening of drinking? I had a REALLY good bottle of champagne in the fridge and was NOT going to miss out on it! … It was D E L I C I O U S ! (thank you Pam : ) When Aaron was leaving, he said … well, looking forward to November when you can drink again!
Well … wait. If in November my numbers are steady I’ll attribute the good news to The Plan. The Plan could help slow the cancer! That’s the hope. On the other hand, if the numbers aren’t good … well, then, I’m going home and having seven cocktails! In the bathtub!
Today’s visit was neither terrible nor great. Numbers are heading up – not speedily, but yes up, slowly. So there’s nothing to change treatment-wise right now. It’s not an urgent situation. We’re waiting for two months — yay, two months without a trip to DF! In November I’ll have a CT scan and MRI. Blood numbers too, of course. We’ll see what it all looks like then and rethink.
I’m feeling okay about today. I had been expecting worse. Because of all the fun this summer it just felt like some shoe should be dropping! Well, not actually because of having a fun summer, but because it’s time for something to change. It’s the way cancer works. I’ve been on my current meds for over a year. I take really good care of myself to stay healthy as long as possible, but without a new miracle medicine or some divine intervention, my future is set. Flexible to a degree, but set. I’ve gotten used to it. I’m not all that different from everyone else on the planet … we ALL know we’re not getting out of here alive! (thank you Henry!)
When I was young I thought being hit by a bus was absolutely the best way to ‘go.’ No warning whatsoever. Now after living most of my life with chronic illnesses, I’ve changed my mind. Having time to know and to plan is fantastic. Like this summer! I checked so many things off my bucket list this summer!!! Ha! … Wait a second! Whoa, whoa. QUICK – it’s time to add more items to my bucket list. Open-ended items, lots of projects! Otherwise, if the list is all checked off, wouldn’t that mean it’s time to go?!!
Not now though. Hell no. My friend Alison’s kitchen project still needs me!
After the road trip, a week of rest was in order. (Not just for me, for my daughter too, which made me feel better : ) Then, onto the next project … CakeAllDay Day.
My birthday is August 20th… which this year was a Tuesday, and I decided to serve cake, all day. I sent emails before the road trip, inviting friends to stop by for cake any time between 10Am and 8PM. Such a fun idea? Yep. It was a totally fun day! Five different, decadent cakes: Flourless-Chocolate-cake-w-raspberry-sauce, coconut- layer-cake, carrot-cake-to-die-for, homemade-secret-recipe-cheesecake (thank you Carey), and yellow-layer-cake-w-chocolate-icing-and-mousse.
My high school bestie, now a Californian, was the first to arrive … surprise! Omgosh! Cousins from Boston came! Cousins from Connecticut, my sister from NY, and my nephew from Raleigh were all there! My college pal from Westchester, friends from the Cape, my awesome friends from RI! The day was long and fun and SWEET! And also exhausting. By post party cleanup time my sister, nephew, daughter, Cali friend, and I all sat around the kitchen stuffed and groaning. We each proclaimed that we would NOT be able to eat cake for a year.
The next morning we each snuck into the fridge for leftovers. Carrot cake seems VERY close to a bagel and cream cheese for breakfast, right?!
So, August 2019 … first the road trip … then CakeAllDay Day. The month felt like more good stuff than is possible. Then on August 31st Karen (my late brother’s best-friend-forever-girl-friend, my sister-sorta) arrived for our CAMEL WEEKEND. Labor Day at the zoo! We had a pre-planned camel ‘encounter’ — a private meeting with the camel Sasha, the camel keeper Kim, and a bucket of carrots which we fed to the amazing dromedary. This may sound like something for kids, but nah, this stuff is wasted on kids. We had a BLAST. We spent the whole Labor Day weekend eating, shopping, zoo-going, eating more, and shopping more. Ha!
Sometimes I think I’ve had more happiness than anyone deserves. Funny.
Tomorrow, Monday, is DF again. Wish I could claim no fear … perhaps, if I were a camel
Have been back home now for a week and a half. My daughter and I spent ELEVEN days together, mostly in a car. We didn’t kill each other, therefore the trip was a success! We flew from Providence to San Francisco, then drove down the Pacific Coast Highway to LA, and then headed east on the old Route 66 as far as Amarillo, Texas, before flying home. An amazing and exhausting 11 days.
This is my dining room wall showing our route (red line) with photos fanning out from roughly the correct locations:
In my mind this trip would be a summer whirlwind for my twenty-year-old daughter to remember fondly. And I think it was. Cancer didn’t come in to play too much during the trip, but OY my blood sugars were all over the map (usually at the north pole) so I showed my daughter how to check my blood sugar while I was driving. It was awesome to have a diabetes assistant! Hoping that’s not what she remembers most about the trip! : )
Here’s the Grand Canyon pic again, right side up:
Grand Canyon Mimicking My Hair
And a few other pics …
We saw and did so many awesome things!!! Will we be able to do another trip? Dunno. Might not even be my health getting in the way of a future trip — could just be that one road trip with mom is enough : )
I was doing some online banking this morning and had to call the 800 number to finish up. This was frustrating — ended up having to call three different numbers, was given incorrect information, and wasted much effort trying to navigate the voice operated system. Ugh. Nope! Apparently we have to talk to an actual person to close an account. That person, John, immediately inquired about why I was closing the account and gosh wouldn’t I be interested in investment options from the bank? I decided to pull the cancer card: John, I said, I have CANCER, so, NO I am not interested in investing, I just want to close the account and spend the money.
Haha on me. The cancer card didn’t work.
John started telling me his own cancer story. He had had a tumor on his spine, was in a wheelchair, and his doctors had pretty much written him off. John decided to ‘make the doctors wrong.’ We spent ten minutes talking about various cancer details and things he used to help himself heal. John is now almost completely healed and the spinal tumor is gone … this is a cancer which was supposed to kill him years ago.
When you get a cancer diagnosis you automatically join a club. It’s not a club anyone wants to join, but there you are. Sometimes a fellow member shows up and startles you … often in a good way. And it’s interesting how a stranger can change your day, change your outlook, remind you about optimism. Thank you, John in Pittsburgh, for our conversation. And thank you for closing my account.
Just a quick update. Had a CT scan, an MRI, then bloodwork, meeting with NP, meeting with oncologist, and meeting with therapist. Squeezed in ten minutes of meditation during this schedule (because the APP TRACKS my daily diligence:) !!! Even managed to take a quick nap sometime in the there (much needed – i got up at 4:00 am to start this day!).
The bloodwork showed tumor markers down slightly (that’s the right direction). Scans showed that previous tumors on liver had shrunk a bit (that’s great!). But scans also showed a new ‘tumor-looking-spot’ on my liver. I suggested maybe it was a smudge on the film. NP said, sorry nah. I suggested a pumpkin seed lodged in my right lobe? I’ve been eating a LOT of pumpkin seeds, you know : )
Yeah, probably not a pumpkin seed either, but we’ll just look again in four months and see what’s happening. Nothing at all changes with my current treatment. Nothing critical.
Sooo, I’m headed to my FABULOUS bathtub. Can’t fathom anything better right now. Tomorrow, another day to plan forward!
This evening I was on the phone with my dear pal, and love, and sister-in-law, Karen, who, like me has not-insignificant health issues. Her’s are cardio … heart problems since childhood. She and I are both big believers in positive thinking and positive visualization. While positive thinking/imagery are sometimes written off as silly, ‘wishful thinking’, positivity can and does make one’s thoughts, one’s head, feel better even if not one’s body. (I believe it can do both.) But EVEN if only your mind and thoughts feel better, hell, that’s huge!
Tonight Karen admitted that she was just not able to see herself as being strong and robust … could not do the visualization. Ha, I thought, I’ve been there! Decades ago I remember thinking I’d never be able to handle diabetes gracefully. Was frustrated that I couldn’t imagine it and couldn’t visualize it at all. So, what I did instead was this … I visualized myself being able to visualize it (living a life with diabetes in control). It was my ‘visualization stepping stone’.
It worked. Not over night, but it worked.
Karen loved this! Loved the tactic of visualizing yourself being able to visualize. I had only ever mentioned this idea to my daughter, when she was a teenager, and of course, as a teenager she ROLLED HER EYES big time. So it never occurred to me that it could be of interest to anyone, even though it has worked for me many, many times.
I have more to write about hurdles and positivity, but wanted to get this written tonight, Sunday. Thursday is a big Dana Farber day — CT scan, MRI, blood tests, NP, and then oncologist. Woo hoo!
Onward!
(And, quick update, hair is very FLUFFY with this summer humidity. : )
