Narrowing of Neuroframinal

The MRI result: narrowing of neuroframinal. How do you spell that? So the MRI showed mild/moderate narrowing of the bone where the nerve exits my lumbar spine. Both sides although I only have symptoms on my right side. It's kind of like stenosis but it's specific to this area. In a strange way it's good to have an explanation. But when I got the call, I felt like all the life force drained out of me. Please not another thing! It was a quick call as I was between sessions. She said the cancer is NOT active but it's the result of cancer/scar tissue. The scary thing she said was - if you lose control of your bladder or stoll - call us. Or if you can't bear weight - call us. God! As if I wouldn't. It's been a few days now and I have tucked it away. I feel my right foot numb in spots with each step. But I continue to hike in the woods with the dogs and figure that if I'm not tripping/stumbing/falling, I'm OK. For whatever reasons, I never really practiced yoga consistently after the hip flexor tendonitis in fall of 2018. I read online that yoga can be helpful so I'm starting up again. It certainly can't hurt! On other fronts - on Monday I install my show "Dabbling in Blue Magic" at Galatea Fine Arts in Boston. I have made a whole series of encausic monoprints - 40 in all. Although 16 of them are tiny - just 4" square. I learned this technique in early spring and made all this work since then. I'm really happy with the work. I've never before created a consistent body of work for a specific show. A friend invited me to apply for membership to a gallery in Chelsea/NYC. You can apply individually, as a twosome or even a larger group. 3 of us will apply together - the others also work in wax. Wouldn't that be something? To be accepted into that gallery. Work is going really well. I have been trying to rebuild my in person practice and finally after many months - have enough people to fill on day a week. Working from home/telehealth has its advantages but I really prefer in person. The other new thing is I've started to play banjo. I love the sound and a few weeks ago bought a Recording King which is a profesional level instrument. I've taken a few lessons and am crazy about it!

Chatham

I try to visit my aunt more regularly these days. She's 93! I spent 2 nights with her this week. The Cape off season is so delightul. This image is from Lighthouse Beach in Chatham. I had my quarterly consult with the oncology NP on Monday. Everything is fine! I told her about a developing concern - my right foot has some numbness. She does not suspect it's cancer, but I'll get an MRI tomorrow to see if there's a nerve impingement in my pelvis. May be related to the fall on skis last Januaruy. I can't recall when this started but it's intermittent and feels different at different times. So far I have not fallen, but it's much more difficult to balance on that foot. Lots of people have numbness/neuropathy for lots of different reasons. It hasn't caused me any real trouble - I can play tennis, hike, paddle board. But I want to understand (if possible) what's happening and to avoid damage if that's the case. My latest thing is buying a really good banjo a few weeks ago. I was at a bluegrass festival in August and walking through the camping area, I heard the most beautiful slow banjo picking. I thought - I want to do that! So I met a stranger at a Panera Bread off Route 84 in Connecticut, handed over $1300 in cash and went home with a Recording King 5 string. And have not regretted it! Although its hard to make time for 2 instruments. I'd say it's an excellent problem to have.

Acadia National Park

Hello from Acadia National Park! This is our 7th annual visit. We found a little rustic cottage in Tremont and stay here every year. They allow dogs and we love the quirky funk of this place. August 25 was my 14th year "anniversary" of cancer diagnosis. Way back in 2008. Strangely enough, Glenn had a dermatology consult that same day and was told he has a basal cell carcinoma on his forearm. He has to go back to have it incised once we get back. They will tak a large area of skin. Hopefully it's limited to that level of treatment and no more spots. Most people our age spent a lot of time in the sun and I recall using products to promote tanning. We packed the truck full of toys - paddle boards, golf clubs, bikes, tennis raquests. Such a treat to be here and able to enjou it all. No other big updates at this time. My hope for work is that I will fill my in person schedule on Tuesdays. Getting there! It's interesting that most people actually prefer telehealth. Until March 2020 I could not imagine any model other than in person. Looks like telehealth is here to stay.

DAMN SKIS!

It was 2 sleepless nights. We met with The Vixen this morning. In the photo I was waiting for blood to be drawn, holding a barf bag as I felt so anxious. But all that stress was for naught - The Vixen's take is that the light up on the bone scan is atrrubutable to the fall on skis last January. I will be seen in 3 months as usual and scans in 6 months as usual. She says we stat the course and don't fix it if it isn't broken. We celebrated with an early lunch, a local diner that serves Albanian food. With a big fully belly I went to bed for a few hours as the accumulaed stress began to abate. No more skis! No more long boards! And no more reading reports before I speak with her. Although reading the report did jog my memory about those 2 falls. I had forgotten.

Pathological fracture?

I had scans last Friday July 8. And my consult isn't until Monday July 18. In the meantime the CT and bone scan reports are available online. So... I read them. And although everything is the same as 6 months ago - lesions on sternum, femur, pelvis, a few nodules in my lungs... no changes. OTHER than mention of an area on my iliac that may indicate a pathological fracture. I totally freaked out. I've never had that show up before. And it's BAD if that starts to happen. The bones stat to break which leads to a lot of pain and total deterioration of my skeletal system. Wheelchair, etc. Terrifing. That night we had cocktail(s). I cried. Felt so fragile yesterday. But as we took a hike last night over some exposed tree roots we were talking about the importance of balance and avoiding falls as we age. It popped into my head - WAIT - I had 2 really bad falls on skis in late January. Which was afer my scans on January 10. Voila! Could this be causing the iliac to light up? Maybe it's not a pathological frature? Just a bone that's healing from those falls? I emailed The Vixen last night to tell her about those falls. We're waiting anxiously for Monday. I would like to feel like I could ask for sooner consult but The Vixen can be tricky. I don't want to be told that I'm anxious (ha ha). C'mon - most of us would be anxious if your pathology report suggests a pathological fracture. So I will wait.... and the reality is that there's probably nothing to do except radiation if there's too much pain. I have no pain whatsoever. Or go to infused chemo... but I don't think we're there yet. I know that bone failyre/pathological fractures are a strong possibility. Kind of enivitable with this kind of cancer. Just not yet, please!

Paddle board

I'm happy to report that the blood pressure medication is working! I resigned myself to taking yet another daily medicaiton. During oral chemo weeks, it's up to 7 pills of various things. So strange in the sense that I still identify as a healthy person. I have yet to test positive for Covid - although I ony test when I have to, ie get invited to a get-together and the host(ess) asks for it. For whatever reason, I just continue on. I sometimes wonder if the extensive trauma we endured as kids kind of helps me in a weird way - the ability to compartmentalize. I get scans on Friday with results 10 days later. Scheduling blip? Who knows. My 14 year anniversary since diagnosis is August 25. I am astounded that I have done so well for so long. Really inexplicable since I don't do anything "healthy" other than exercise and have fun. And I'm not a huge exerciser, either. Daily hike with the dogs if I'm in Connecticut. Walking 9 holes of golf once a week or so. Paddle boarding in the summer. And I do lots of "bad" things - I love cocktails. And eat everything. Speaking of fun, here's Glenn fooling around on the paddleboard doing a "headstand". He has not taken yoga classes other than occasionally doing it with me, but we were with another couple on the boat yesterday and Shiweh is a yogi. In the meantime, 2 good friends have been diagnosed with cancer. One has stage 4 lymphoma and the other breast cancer with genetic mutation. She has surgery scheduled w the rest unknown at this point. A friend of a friend just got diagnosed with Stage 3 breast cancer. The state of the world - ugh. Roe vs. Wade. Ukraine. Weather. It's hard to stay in a good place.

Lisinopril

I meant to write a follow-up... it took a few days to sort out but my PCP (Of over 30 years) wrote me a script for the most common blood pressure medication, Lisinopril. Since I was leaving last Saturday for a week of vacation in the Azores, she said to wait until I get home in case something weird happens while I'm traveling. I did take my blood pressure the three days before traveling and reported the numbers to her (like 150/85). It's no emergency - it's been like this for probably 2 years now. I have this vague hope that cutting out salt will somehow turn this around. Since the consult last Wednesday, I haven't added any salt to anything which is not to say I avoid salty foods. Another medication kind of blows my self-image as a healthy person. How can I think I'm healthy? Good question. Oral chemotherapy 2 weeks on, 1 week off. Blood thinners. Baby aspirin and vitamin D. Those hardly count. But blood pressure now? For a few daus I thought a lot about death. Not suicide. But like what if my body just gives out? I feel as if the chemo meds have aged me a lot the last 2 years. About 2 weeks ago now a long term patient dropped dead of an aneurism. She was 53. Just 10 days before I'd had her committed for an inpatient psychiatric evaluation because of suicidal ideation/plan. She was released a few days later and thanked me for it. We had 2 follow up sessions and she was sounding so up and future-oriented. She said the hospitalization was a "wake up call". I had been her therapist for over 20 years. 2 days after I spoke with her, I got a text from her daughter about what happened. She did not suicide - she had been chronically suicidal most of the time I knew her - but it was an aneurysm. My aunt Barbara died the same way in 2007. I'm writing from the Azores. It's April vacation for my sister's kids, and Zoey chose this amazing place and they invited me along. (My Portugese has definitely been helpful.) It's under 5 hours from Boston and like an enchanted land - something out of The Hobbit. I was hopiing to include a few photos but my computer hasn't accessed them yet from my phone. Today we are going horseback riding. I was an expert Western rider as a kid but that was long ago. And these are English saddles. The equestrian center is on a 16th century former estate and they have 36 rescue horses. This promises to be an amazing experience. I'm a little fearful - my bones are not in good shape by any standard - but here we go. This image is from a satellite gallery of Cambridge Arts Association which I recently rejoined. Last week there was a meet-and-greet that I attended.

All Good

Today was a "regular", non-scan oncology visit. Lucy went with me for the first time in a LONG time, for sure not since Covid. She met me at my house and we walked over together. A visit to the lab, vitals, then a quick lunch before the consult. It's been almost 14 years now. I was diagnosed August 2008. So it's kind of "routine", yet it's still surreal. Looking around at the other patients is weird - people kind of avert gaze but it's clear who is the patient, who is the visitor. The tell-tale wrap around the arm where the IV sits for the day. And the wrist band. And some - surprisingly few - look sick/weak. In all these years I have yet to see anyone crying or visibly upset. It's a very calm environment. Today we met with the NP Caroline who is just wonderful. You can ask her anything and she gives a clear answer. My feet were a little beat up this time so she's advising taping them up. I'm going to the Azores with my sister and Luke and Zoey on Saturday. We will walk/hike a lot so she gave some ideas about what to do/avoid. I actually asked her what kind of cancer I have! Initially she was baffled - it's metastatic breast cancer! But what's weird about my case is that initially I was triple hormone positive, but in 2017 when I had a recurence I tested negative on a bone biopsy. So now when people ask me I can be more specific about the exact type. (And I've already forgotten the acronym.) For a while now my blood pressure is high. Quite high. The medical assistant was alarmed. That coupled with my freakishly low pulse. Caroline suggested that I get a home monitor. Sometimes it's "white coat symdrome", ie it's elevated in a clinic. I dutifully bought one. I'm kind of an I LOVE LUCY skit - it took a while to figure out how to use it. It read high again. My sister insists that I email my PCP. I will! Now! I'll return in 3 months for scans and a visit with the Vix. More later.

Hello! Stable!

Yesteray I had scans - CT of chest, abdomen and pelvis. And bone scan. I was pretty worried this time as I've had some intermittent left hip pain over the last month or so. So it was a HUGE relief to hear that all is "stalble". That's a bit of a misnomer - it's stable, as in the cancer hasn't spread, but the Vix assures me that there is cancer throughout my pelvis. I didn't konw it was on my left side. But it is. So fine, OK. Whatever. It is still quite confusing, actually. She readily says that they are chasing shadows. Bone cancer isn't like a mass. It's diffuse. And she has described the skeletal system as an open channel. Cancer cells float all over the place and hopefully don't take up "residence". I am so damned lucky It will be 14 years in August. Early on it was looking so dire. I remember asking her when we first met - what is the longest any of your patients have survived with my profile? she said 12 years. And I've certainly outpaced that! She is not going to investigate the hip pain - I am just to let her know if it worsens significantly. And in the meantime I continue on oral chemo - I've been on that for almost 2 years. People talk about their "forever-this-or-that". This is my forever drug. Until it's not. Communication with The Vix is confusing at times. When I first started the chemo, Glenn and I left the consult with the impression that I'd be on it for a few years. Next consult we asked about that again - she said, no, you will be on this indefinitely. I've had that experience with her many times - which is why I always go with someone to her appointments. To make sure I understand what she's telling me/us. The only other comment I have today is that I somehow keep the cancer thing super compartmentalized. Maybe that's a coping thing I learned young, living in my insane family. In my experience, I'm a cancer patient only when I am inside the Dana Farber. Otherwise I'm not. I don't think about it mucch, I don't talk about it much. It's better that way. I'd rather talk about a million other things I am not that diagnosis/progosis. I was in Brookline all of last week - hoping see friends, play bluegrass with the Handsome Ladies, go to First Friday gallery openings. Most of that didn't happen because of the Omicron situation. It's absolutely everywhere. At this point I'm not sure why I'm trying to avoid it - it seems inevitable. We did a few "unsafe" things over the weekend and it felt wonderful! We had some friends over for dinner. Met another friend at a cafe. Went to see a few shows at the Museum of Fine Arts/Boston. And ate Thai for lunch yesterday to celebrate the good scans - inside! Living with cancer - living with Covid.