A Collection Of Updates

How Am I Doing mid-March 2026

A Collection Of Updates, '26 March /

My last round of tests, a PET scan, blood work, and a doctor’s appointment, produced very welcome results.  All the tests showed my bone lesions were better than in December and December’s results were better than in September.  Now instead of seeing the doctor every month I’ll be going every three months.  Better is Great! 

There are side effects though, most particularly fatigue and achy hips.  If the fatigue or any of the other side effects were so bad as to crush my quality of life, the doctor would change the medications but I’m ok, I might wear out but I can basically do what I need to do.  And since what I’ve been doing is working well re the cancer, I’m sticking with the current regime.

Are you following the budget cuts to medical research btw, both proposed and implemented by the Trump administration? Cancer research particularly, women’s health issues particularly.

FROM THE INTERNET (questionably true but you get it):

“I think my favorite thing that’s ever happened to me on the internet is the time a guy said “people change their minds when you show them facts” and I said “actually studies show that’s not true” and I linked Two sources and he said “yea well I still think it works”.

Not A Sprint

A Collection Of Updates, '25 December /

I had a third PET scan and the results were good news, better than the second one which was better than the first, all moving in a positive direction so happy happy joy joy. I did ask ‘does this mean I’m going to survive the Trump administration?’ and the doctor just wouldn’t commit, but I’m getting it by now, no one is going to commit about survivability in the long run. I have heard “We’re on a marathon, not a sprint” a -tedious- number of times.

Thankfully I feel good, ready I hope to go back to PT.

I’m not going to write again for a while about all these doctor’s appointments and regular testing etc. unless something changes – so for the time being no news will be good news.

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The Number

A Collection Of Updates, '25 November /

A perfect dinner for a dark and stormy night, and float the crackers in the hot soup, obvi.

My long long-time friend Les, living in Boston for many decades, passed away last week from Parkinson’s, Congestive Heart Failure, and Rheumatoid Arthritis.  Everyone knew it was coming, and as Elizabeth wrote “Be comforted by the knowledge that Les parted this world exactly as he wanted to.”  What a blessing for me that we got to have an excellent zoom visit the week before he passed.

Then, I had decided before going to Uzbekistan that I wanted to find a woman oncologist whose entire practice was breast cancer.  My Physical Therapist knew of and recommended such a woman at the Saint John’s Cancer Institute, so I had an appointment on Monday and transferred my care to her.

These two events sent me on a googling frenzy re metastatic breast cancer life expectancy.  I’ve been dealing with this cancer for more than a year and as yet I’d never focused on this question because I understand there are so many variables, no one knows the number.  But actually, there is a number, statistically, and that number is five years.  The internet reports from many sources that 30%+/- of women with metastatic breast cancer are alive at five years past their diagnosis. 

So, the last six months of a cancer journey is not so great, and I’m already one year in, and that leaves three and a half years feeling good if I make it to the 30%.  WOW, now that’s a reality check!  Honestly, this is the first time I’ve absorbed the math.  On the bright side I have the most treatable kind of breast cancer, the scans are showing improvement, I’m generally in good health, and oddly, being post-menopausal is a benefit for survival.

After a day of making lists, I’m back to just me, adept at one-day-at-a-time thinking, and it comes naturally to me to do-what-I-can-do and not dwell on the rest.  And I’m re-reading what is so far an excellent book even the second time around: How to Be a Stoic by Massimo Pigliucci.  Finally, a philosophical worldview that suits me.

So that’s it, one-day-at-a-time, and I want to be the best person I can be every day, kind, attentive, and looking ahead. And I’m springing for those business class tickets!

My 3rd Infusion At Week 30

A Collection Of Updates, '25 November /

Outside my front door this morning, it was foggy.

I was just about good date-and-time wise after returning from Uzbekistan, and then it was time for the once-every-3-months infusion that has, the past two times, made me feel pretty sick for several days – extra weak and a slog through the dates I had made. This time I made no plans at all for 3 days and in those 3 days I slept no less than 40 hours. And now I feel ok!

Wow, I slept through all the hard parts! Let’s try that again next time!!

“IMPRESSION: Overall Improved Appearance”

A Collection Of Updates, '25 September /

YES🤗, from yesterday’s PET scan report: “IMPRESSION: Overall Improved Appearance.” This is excellent news for my long-term well-being since the doctor said it means the current treatment plan is providing a positive outcome, and the longer I don’t have to change treatment plans, the better.

When people ask me how I am I’ve been saying “I don’t know, sometimes better, or worse, or the same. I’ll wait for the test and let science say.” Science says better so YAY. And even when I feel worse or the same, still, the answer is I’m Better!

Continuing complaints which pale in light of “Overall Improved Appearance” include lack of stamina but now that I know the medication is working I hope I can generate the will-power to do more PT On The Regular. The lack of stamina in my legs also impacts flexibility, which, after strength, will be a focus of PT. Very secondarily, the medication does have some chemo in it and my already very few hairs are dropping at a visibly unfortunate rate. And I still need to be prepared to do nothing for several days after the infusion, but that’s not bad since it happens only once every three months. Also of interest, the only time I feel unwell at all is after the infusion and if I’ve done too much. Fortunately aggravation from the infusion and doing too much are both easily remedied by taking a rest.

Here’s SO many thanks to all who have sent blessings my way, you did it! (And as we used to say…back in the olden days…better living through chemistry.)

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It looks like I never shared this image here, it was for my Reading Group who did an amazing meditation for my recovery. They also created deeply heartfelt gifts I appreciate beyond measure. I’m making a place for them all on my wall and will include a picture when it’s done. Below is the first PET scan and a picture of how I want to feel that inspired the meditation and the art projects.

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The Report – unless you’re a big fan of minutia and want to google all these medi-words, please just roll on by!

NECK AND CHEST: Mildly FDG avid left neck lymph node with an SUV max of 2.1, previously demonstrating an SUV max of 2.4.  Left supraclavicular lymph node with an SUV max of 1.3, previously demonstrating an SUV max of 2.9.  No new FDG uptake in the neck.

Mildly FDG avid left axillary lymph nodes with an SUV max of 1.9, overall stable to slightly decreased in FDG avidity since the prior study. FDG uptake in the left breast with an SUV max of 2.1, previously demonstrating an SUV max of 3.1. Mildly FDG avid mediastinal lymph nodes with an SUV max of 2.8, not substantially changed since the prior study.  No other abnormal FDG uptake in the chest.  Coronary artery calcifications.  Several noncalcified pulmonary nodules scattered throughout the lungs with no abnormal FDG uptake, unchanged since the prior study.

ABDOMEN, PELVIS, AND THIGHS: FDG uptake in the left adrenal gland with an SUV max of 4.8, previously demonstrating an SUV max of 2.9, which is nonspecific.  No other abnormal FDG uptake in the abdomen, pelvis, or proximal thighs.  Surgical absence of the gallbladder.

BONES: Multiple FDG avid bone marrow metastases, all of which demonstrate varying degrees of decreased FDG uptake compared to the prior study. For instance, a lesion in the T1 vertebral body with an SUV max of 2.6 previously demonstrated an SUV max of 7.1 and a lesion in the right iliac wing with an SUV max of 6.3 previously demonstrating an SUV max of 7.8.  No new bone marrow lesion.  Interval sclerosis of many of the bone marrow lesions, likely a healing response.
IMPRESSION: Overall improved appearance of the previously seen metastatic disease, as detailed above.

Result History 

PET CT Skull Base To Mid Thigh 9/23/2025 COMPARISON CT of the chest from 7/17/2025 and PET/CT from 3/21/2025

A Tough Week

A Collection Of Updates, '25 August /

I should be turning the corner on my hardest week yet, August 2-8, the 17th week since starting treatment.  I’m sure it was a combination of circumstances.  I got home from Kansas on Saturday feeling another uti coming on but since I had an appointment on Monday for the second infusion and a blood draw, and it was the weekend, I decided to let it go until then.

So Monday I got the infusion and left blood and urine.  By Tuesday afternoon there were no results from the tests and I was running a low-grade fever, so I went back to the oncology office.  Oh, they forgot to send off the urine and it was too old now, and the blood had curdled, or some such thing, making it unusable.  So I left another urine sample and went straight to the lab for them to draw blood again.

The rest of the story is a couple days of more of the same, too tiresome to write, but finally by Friday everyone was ‘on the same page’ as they say. 

The circumstances I’d been working through include – tired from the journey home, tired from the side effects of the infusion, tired from carrying an untreated uti, tired from running a fever, and tired from trying to get this all straightened out.  On top of which I had an appointment with my GP, an appointment with my PT, lunch dates, and the Hollywood Bowl, all in four days.  And for heaven’s sake, both my tenants have situations that require my attention.

My body feels quiet now and I’m expecting the New Normal for the next several weeks and am hopeful that the excellent and cancer-experienced PT will result in measurable improvement.  That’s what we want.

I must not forget, do not make any plans for at least three days after the next infusion which isn’t until November.  Get the infusion, go to bed. Before that though, in the last week of September I get to have a PET scan again to figure if this is a successful treatment plan.  That’ll be exciting!

What A Relief

A Collection Of Updates, '25 July /

On July 15 I wrote about how, in the previous two days, three new ‘situations’ involving three different medical professions had presented themselves.  There was 1) 3 weeks of pain in my “cancer arm” requiring a CT scan and an ultrasound 2) red blood cells in my urine requiring a cystoscopy and 3) the dentist popped off a crown while cleaning my teeth.

I am so very pleased to be able to report that as of today all three ‘situations’ proved to be benign and everything related to these three ‘situations’ is resolved.  What a relief!

(p.s. if you can avoid getting a cystoscopy I would recommend it…)

Into The 14th Week of Treatment

A Collection Of Updates, '25 July /

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My cancer arm, charting all the ins and outs, red blood cells in my urine, and the last straw, while cleaning my teeth the dentist popped off a crown.

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Since I wrote last, I’ve still been splashing around in pee-world.  Remember the three courses of antibiotics it took to clear a UTI?  Added to the medications to stave off UTIs, recently the urologist had me measuring my pee and keeping a log of when and how much I peed and when and how much fluid I drank.  It’s annoying, but interesting since I would have guessed wrong on every metric.

What is much more annoying is that my last urine test pointed up too many red blood cells, not enough to see with your eyes but enough to warrant a cystoscopy since red blood cells in urine can be an indication of bladder cancer.  And when can the urologist do this test?  In three weeks.  The PA says three weeks out isn’t bad to schedule a procedure, but I just kept calling around and got an appointment at Cedars instead of St John’s for one week out which is a major relief, having the test before I go to Kansas.

I found out about the cystoscopy while I was waiting to see the oncology PA because my ‘cancer arm’, the one with lymph node involvement, has been bothering me.  He feels 99.9% sure it’s muscular, from when I tried to get back to exercising with weights, but under the circumstances of me being anxious about it I think, he wants me to get this “93971 (CPT®) – PR DUP-SCAN XTR VEINS UNILATERAL/LIMITED STUDY” and this “71250 (CPT®) – CHG DIAGNOSTIC COMPUTED TOMOGRAPHY THORAX W/O CNTRST”, tests I was able to schedule for the 17th.

All this happened yesterday.  And then could it be over?  No it could not be over.  I went to the dentist today and while cleaning my teeth with the pointy tool he popped off a crown. Bam.  I’m hypersensitive about getting infections, so I’ll be back to the dentist tomorrow, but a different one because this one didn’t handle the situation very well.

I’m writing this having calmed myself, mostly because why not, nothing to be gained by feeling anxious, say I to me, deep breaths.

Third Time’s The Charm

A Collection Of Updates, '25 June /

At the conclusion of the previous post, May 2, I remarked upon my beginning of an antibiotic for a UTI. Here’s what happened after that.

By May 10 I wasn’t better and worse yet had experienced a few episodes of bladder spasms which is dang detestable. My oncologist and the PA have been telling me over and over, let us know if there is anything wrong, anything at all, especially potential infections. So I reached out to the PA and the advice was to go to an Urgent Care and get another test. We (Windy and I were on our road trip) went to an Urgent Care at the Moab Regional Hospital in Moab.

I’ll skip the details except to say that the whole in-and-out experience was MAGIC. It was Saturday, I was in Moab Utah, population 5,000-ish, and within two hours they had done the test, the Urgent Care doctor had talked to my on-call oncologist, reviewed my whole history, and together they decided what to do. It was AWESOME. And my sister the nurse was a great encouragement. Now let’s see how it turns out. These were my thoughts at the time.

I am quite obsessed with finding out the cause of whatever is wrong with me, for every little thing, because, you know, cancer!

So I got home and Still was not cured of this blasted UTI. I went to a urologist who specializes in cancer patients and did another urine test plus she took history, did an ultrasound of my bladder, and prescribed a third and yet again different antibiotic.

Here it is June 9th, a month and a week after all this started and I am both clear of infection and the doctor assures me the trace amount of blood found in my urine, only visible under a microscope, is not enough to worry about. (Blood in the urine is a primary indicator of bladder cancer.) So that would be that on the UTI front Except that one of the cancer meds I take makes a person especially vulnerable to UTIs and I now have new medication to increase protection.

So all in all – It Could Be Worse! If you’re wondering “What the heck?” you can click here for more of the story in Reverse Chronological Order.

2025 UTI April-May-June antibiotics to remember:

  • April 30 Bactrim DS ( sulfamethoxazole-trimethoprim) Oncologist
  • May 10 Augmentin (amoxicillin/clavulanate) Urgent Care in Moab
  • June 2 Keflex (cephalexin) Urologist

My First Infusion

A Collection Of Updates, '25 May /

I got back from Washington DC on Sunday night, slept into Monday, and on Tuesday got my first bone strengthening infusion. I was fine until Wednesday morning when I became quite unwell, like all my ‘regular’ symptoms were amplified.

I cancelled everything for Wednesday then Thursday and finally Friday too. But then when I woke up to pee at 2am Thursday night/Friday morning, I was so much better, still weaker than I was before the infusion but doubtless better. The information booklet warned of side-effects of the infusion (columns of them!) so I wasn’t freaking out, especially in retrospect now that I know it was just a couple days. What a relief, oh my goodness, per the booklet side effects can last from a few days to a few weeks.

Piling on, I’m also taking an antibiotic for a UTI! On Tuesday I told the doctor something was wrong in my world of peeing. He told me it was a side-effect of the pills. I thought .. maybe .. but I asked him, please, do a urine test. Et voilá, UTI.

Windy and I are leaving on our two-week road trip on Monday and I’m so extra happy to be feeling up for it!

The Verdict Is In

A Collection Of Updates, '25 April /

An update on the story of me and my hips after the first appointment with my new best friend, the oncologist, on April 10th.  If this doesn’t sound familiar and you’re interested in how did we get here, click on the link for the previous summary of me and my hips, in reverse chronological order: https://wheretheheckismom.com/a-collection-of-updates/

Now, finally, an answer to the question, what the heck is wrong with my hips = Cancer.  Yikes!! A PET scan revealed likely cancer in my bones and a small mass in one breast.  A biopsy confirmed cancer. 

The cancer started in a breast which they didn’t find with a normal mammogram view due to “The breasts are heterogeneously dense, which may obscure small masses and the far posterior location”, although of course I could have done a mammogram sooner and they might have then recommended an ultrasound, but who knows. Before I left for Mexico they used ultrasound to confirm the PET scan and do the biopsy. Once the biopsy results were in the doctor ordered ‘targeted therapy’ cancer meds that I got when I saw him on April 10 and I started the morning of April 11.

I’ll be taking two pills in the morning is all, and a bone-strengthening infusion once every three months, and if my bones don’t feel better in 6 months, they might do some radiation.  It’s not that I’ll be cured but long-term remission is the goal.

When I first heard “Cancer!” I said to myself well, I’m flying first class from now on!  But after two visits with the doctor and his crew, I’ll tell you that oncology group at St John’s seems totally optimistic that I have many more strong and happy years ahead. It seems I have a good chance to last well into my 80s, and even longer if I tolerate the current treatment plan, so maybe I’ll stick to Economy Plus for a while.

So yes, It’s not great, but I’m ok, it happens, it could be worse!

As Of March 21, 2025

A Collection Of Updates, '25 March /

You know what’s crazy, so far the only thing that brings tears to my eyes is when people are nice to me. Crazy, right?!

I walk around, eat well, and sleep enough although my hips do ache and recently the ache can run into my lower back. The only thing other than that is I have ouchy trouble with chairs and stairs but once the activity of sitting-standing-stepping is over I’m ok again. I’m ok in spirits too. I’ll keep on top of what needs doing and do my best.. me and the Stoics..

No doubt things will change any number of times before it’s over. I’ve already lost track of who I told what and some people have a higher desire for, or tolerance of, detail. I’m going to have a special ‘click’ in the upper left of the computer version of http://www.WhereTheHeckIsMom.com for a collection of updates.

The Oncologyst, Dr Kristedja, said go ahead on your trip, there’s nothing you can do to make it worse, so I’m going, leaving on the 27th, back on April 9. Pictures from Mexico forthcoming!

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Timeline (depending on your desire for detail):

2024

Sep 01-ish…….Started hip-specific TikTok exercises to strengthen myself for the trip to Chicago and went on a flurry of ‘standing on one leg’.

Oct 14               I was a little limpy in Chicago although I averaged 13,000 steps per day.

Nov 21              I decided something needed diagnosing and saw Dr Jacobsen, my Primary Care, got xrays which revealed minor osteoarthritis, she referred me to PT and offered other referrals if I wanted.

Dec 03              Started PT and continued to get worse but kept at it.

Feb 26              Finally giving up on PT, I saw Dr Horacek, Orthopedic specialist, who took xrays and ordered a LT side MRI to determine if it was bursal inflammation or gluteal tendon disease or both, neither particularly urgent. His MRI appointment was for the 19th but after a week of waiting I decided to see if I could get it done sooner, which I could, on the 13th.

Mar 14              Saw PA Adege, who ordered the RT side MRI and was able to schedule for that day since the LT side MRI was worrying. 

Mar 19              Saw Dr Gerhardt, another Orthopedic specialist, who, after reviewing both MRIs referred me to Oncology, I walked across the street and made an appointment with Dr Kristedja for the next day.

Mar 20              Saw Dr Kristedja, the Oncologist, who took blood and ordered a PET scan ‘stat’. I walked up to the imaging place to make sure I could get an appointment for the next day.

Mar 21              Had the PET scan but I’m not expecting results until I get back April 9

I got the PET scan, easy-peasy, and when it was over they told me to stay away from children and pregnant women for 24 hours because for that long I would be radioactive. There’s something.

And I might as well mention the Massage Therapist I saw in early March who said my problem was a tight psoas muscle and what I needed was more massage.

An Update And Thanks

A Collection Of Updates, '25 March /

Thanks to Angela, Rome, and Lilly who came out today in the rain to drive me around, to save my collapsing hips. We dropped off and picked up the car from getting its service, went to the doctor’s, and then went to get a second MRI.

The doctor’s appointment with a PA worked out even though I still don’t know what exactly is wrong with me. She was able to get the second MRI that very day, and finally an appointment for Wednesday with The Guy, the hip specialist at Cedars-Sinai who seems to have few and random office hours. I prefer St John’s but my GP recommended this Orthopedic practice. My hand is getting frozen from all this finger crossing!

(From the 15th: I’ve spent the day propped up in bed with a pillow under my knees and a pillow on my lap holding up my computer, in complete comfort! I don’t know if it’s a healing maneuver (getting up for various reasons is still a struggle) but I’m thinking being comfortable can’t be bad.)

These two pictures below are from Lilly. What a sweetie, she kept me company all day. Rome, Lilly, and I had brunch (mighty Yum except for the too thick French toast that no one liked) while Angela and Oliver did a chore.

Lilly made a picture in the mirror.

It’s Not Arthritis (And It’s Not A Tumor)

A Collection Of Updates, '25 February /

I went to an othro specialist today where they took another set of x-rays of my hips and got quite a different impression from the first set. I’m just going to copy it all in here:

X-rays: AP of the pelvis and lateral of both hips reveals minimal degenerative changes appropriate for age. Joint space appears to be well-maintained no major cystic changes and minimal spurring is noted.

Impression: Left greater trochanteric pain probably secondary to gluteal tendonness disease and probably secondary left greater trochanteric bursitis, doubt referred pain from the hip or from the back.

Recommendations: Try to help differentiate whether this is tendon or bursa or both I am suggesting she have an MRI scan done of the left hip and then have her return to see Dr. Michael Gerhardt to consider more aggressive treatment on treating either the bursal inflammation or the gluteal tendon disease.

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So I still don’t know the exact problem or the appropriate treatment but it feels like we’re moving in the direction of a diagnosis. Gluteal Tendinopathy is one possibility. The PT recommendation for Gluteal Tendinopathy is strengthening, not stretching. I do like the stretching exercises and I do not like the strengthening ones, but if that’s the outcome, I’ll do better.

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From the Cleavland Clinic: How is gluteal tendinopathy treated?

  1. Applying heat to the painful area.
  2. Avoiding low chairs.
  3. Minimizing stair climbing.
  4. Not crossing your legs.
  5. Sleeping with a pillow between your knees.
  6. Walking on flatter surfaces, when possible.

An Update From Physical Therapy

'24 December, A Collection Of Updates /

This is basically so uninteresting. You’ll want to pass on by!

SO, I still don’t know what it really is with my hip/leg situation, if I have arthritis or not or some other condition like bursitis or IT Band issues or something else. My doctor did give me 99.9% assurance, no honey, it’s not a tumor. My plan is to finish the 10 PT appointments and then see what has changed and if I should see an orthopedic specialist.

Today the PT had the idea to do this electricity test with a buzzing glove to find places where the electricity doesn’t flow smoothly through my body. Oh, well, I told her, those massive scars from The Incident will be a big problem I’m sure. Upon first view YIKES was her reaction. So now on my weaker right side we have my lopsided chair, the scars, and my big ankle sprain. All this could have led to overusing my left side and hence the pain. And I sleep on my left side too. It’s a thought…

I think the buzzing might have helped and although I’m missing a week of PT because of their holiday schedule, I’m looking forward to doing it again. I’m going to repeat here the analysis of the xrays, the exact same on both sides: “Subchondral sclerosis of the acetabulum. Mild joint space narrowing. Few subchondral cysts. There is a tiny osteophyte involving the head of the femur. The bones of the pelvis are intact. There is a surgical clip in the pelvis.” From this I read Mild, Few, Tiny…

The Doctor And The Korean Supermarket

A Collection Of Updates, '24 November /

First off I went to the doctor about my achy hips. She sent me for x-rays and I have a referral for Physical Therapy. From the doctor’s office window above you can see the buildings from Westwood to Century City and below is a picture trying to highlight the Hollywood sign.

It was Rome’s idea, let’s pick up lunch at the Korean Market, H Mart, why H? We didn’t figure that out, but anyway it was a ton of fun. We got several pre-made treats and snacks in the market and then they had a small café with tables and chairs where we got fried rice and beverages.

Decor At The Door.

Lilly, Rome
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