Another Update

As far as I know, or have understood to date, these are treatments coming up ASAP. I hope this post will help straighten out my own muddled head - apologies should it turn out to be fairly un-readable, un-inteligible, un-interesting, or any other 'uns' available!

Targeted therapies for liver lesions and progressed bone issues are being organised - will know more about the former in around ten days. No idea as yet, oncologist not very forthcoming - probably has to get the OK from somebody or other.

Targeted therapy for further metastasis to bones will be a bone medication to be given every 3 months, by injection (Xgeva). This I do not relish, but neither do I relish a fracture of spine or rib! Horrendous side effects, including possible damage to jaw bone. Before agreeing to this medication I insisted on seeing my dentist - did so on Tuesday. The docs prefer patients who are about to use this med. to have any necessary dental work done before beginning treatment. So...my lovely dentist put my mind (reasonably) at rest about the jaw issue which I worried about a lot, due to the "clicky" jaw , right-hand side I already have. He also confirmed that there are no tooth issues to deal with. He recommended that I go ahead with the medication, as far as any dental matters are concerned. An appointment now has to be made for the first injection. First appointment has to be at a main Cancer Center, in a bigger town, half an hour's drive away; any injections thereafter will be done in our local Cancer Center.

Then there's an MRI to be done (sedated) tomorrow (Friday 24 July). This is for radiation planning I think, to expand on results in PET scan.

I shall not see either my oncologist or my radiologist until 5 August. Stuff about radiation, and other bone treatment will then be discussed with benefit of MRI results, which they will need. They've agreed that I can have a sedated MRI because I'll not be able to lie flat for an hour in the machine, due to increased back pain. With the knowledge, by 5 August, that I've had my first Xgeva injection, and with the MRI results, the docs should be in a position to plan ahead in more detail. I guess I shall learn about the liver treatment on 5 August too.

Beyond this, all is mystery.

Whinges: My pain is now considerably worse than it has ever been since this health saga began. Pain pills aren't working as efficiently - or so it seems. I'm suffering from awful nausea, "gagging" and complete loss of appetite, practically living on Boost. Trying to find something in medical marijuana that might help.

UPDATE

My PET scan a few days ago showed that the disease has progressed, in my bones (spine, legs) and now in my liver. I am not feeling too good currently, so can't write in detail just now. I have various treatments coming up, and hope to write about them later. Many thanks for your support.

Quick Update

The trip to Cancer Center in Lawton OK went quite well - scheduled for 2.15 and we were home before 4 o'clock. Boiling hot day here - car registered 97 degrees on the way there and 100 to 104 degrees on the way back!

The few elderly patients awaiting appointments were well-scattered in a large waiting room. All nurses and receptionists wore masks (as did we). Our temperatures were taken before entering, surprisingly, my husband was allowed in with me. I suspect this might be because we are not exactly "local", not regulars at that particular Center.

Blood test came first, then, after the usual blood pressure check, weigh-in, and questions about pain etc by a nurse,  we had a short wait to see the oncologist.

I didn't realise until we were back in the car, ready to leave, that the doc didn't mention blood test results, and I hadn't remembered to ask about them, so things must be alright on that score. I answered the usual questions on how things had been since my last appointment, then a chest and shoulder examination, along with (in relation to my joint and muscle pain) tests of my grip and joint strengths. All appeared as well as might be expected. Doc did ask if I'd like to change the estrogen-blocker medication, suspected of causing the joint pains.  I decided to leave as is, as the alternative was the first medication I took after my original breast cancer diagnosis, which seems like aeons ago now. That medication really didn't suit at all - side effect-wise.

PET scans have not been available for some time due to covid-19. Doc will check when these are expected to be possible again. At my request he quickly agreed that I should schedule a scan during the days before my next appointment with him, in order that a long period of awaiting the result would not cause me weeks of anxiety. I told him candidly about my current feelings. I'd like whatever time I have left to be as anxiety free as possible, to better enjoy what I can of it. I explained that, should there be more trouble discovered by a scan, I doubt that I could stand more surgery or stronger chemo at this stage. He was understanding and kindly. He said that he, as a doctor must always listen to his patients' own needs and feelings.

I shall await hearing from our local Cancer Center as to the date of my next appointment with the oncologist, and regarding schedule of a PET scan earlier that same week or so.

Trying to Triage

I haven't often had reason to use the word 'triage' in everyday speech or writing, but this morning I realised that it's time to triage my several worries and anxieties.

What do I worry about first?

Is it a further spread of my cancer? Or catching - and due to compromised immune system - probably dying from, coronavirus? Or dealing with painful side effects from my medications? Or anger and disappointment at the way the US presidential election 2020 is shaping up.....etc.etc.etc.

I've been kind of self-isolating against common and garden 'flu since before Christmas 2019, so I'm used to that - it has to be the best way for me to avoid picking up this nasty new bug. I'm doing the long-playing hand-wash routine now, too. Worrying will not help, being mindful of risks might. Avoidance is, at least, possible in this case.

I'm doing everything I can to avoid a further spread of my cancer (breast/bone) by regularly taking the medications prescribed. I have, by my own choice, postponed until late this month a PET scan required to monitor my internal situation in detail. I've felt the need for some breathing space, to enjoy, without anxiety, a little more "free" time, as well as allowing more time for painful joint and muscle side effects to, perhaps, decrease to enable me to do the test more successfully. I do worry, of course, but I tell myself that, at 81, I'd be facing the big shuffle off anyway, after an eventful but very good lifetime, for which I am truly thankful.

The results of the November 2020 presidential election will be unlikely to affect me personally much, if at all, but it still depresses me that the one golden chance the people of the USA had to get a president who really and truly cares for ordinary people and their needs, is likely to have been trashed this year by Democrat bosses - corporatists, and conservative in all but title.

Bernie Sanders is a hero for continuing to fight for us - it'll be a generation or more before there's another chance such as that which has been on offer this time around. The Democrats don't want Bernie, never have, never will - he represents policies which would adversely affect their wealth and privileges. They have used every trick in the book (and more) to depress results in his favour. I've been watching more political stuff on TV lately than I have for many years - it's just so obvious what's going on. Media manipulation is, indeed, "a thing"!

As for the most likely Democrat presidential candidate - I don't dislike Joe Biden, but his age is showing, far more than is the case for Bernie Sanders. Bernie has been tearing around the country campaigning like a man half his age. Biden has done little, and when he does manage to make a bit of a speech it's weak and unimpressive. I will not use the word 'dementia', as many have in regard to Biden's speech, but I do believe that it's too late for him to make a good president. His time came some 10 to 15 years ago, when he did have charisma and a certain presidential look and sound about him. See my first blog post on Joe Biden, in 2007, here - a very different take from the one I have today. Bear in mind that, in 2007 I was still fairly wet behind the ears with regard to politics in the USA!
https://twilightstarsong.blogspot.com/2007/11/joe-biden.html
Biden is obviously, now, in the pocket of the oligarchs and Dem establishment. Considering his age, and the serious universal health issues which have lately arisen, I suspect that all will not proceed exactly as planned in November. This isn't as much of a worry to me as the rest of it, but it's something of which I'd dearly love to see the outcome...if other issues allow.

UPDATE

First, I apologise for not visiting my usual blogs and Quora recently - I'm avoiding the computer as much as possible in favour of sitting in front of the TV listening to talk of elections and pandemics - not a good swap, by the way!

On the medical front - I saw my oncologist yesterday to explain the reasons that I'd felt I must cancel the PET scan he had ordered for 18 February. He was sympathetic, and understanding of my fear of being charged a large sum if I had attended for the scan and been unable to carry it out, fully or at all. His suggestion was that I re-book a scan and, to help with the pain in my shoulder and side, take a double dose of my pain pills before attending. He told me that, though in some hospitals when a patient has difficulty managing the scan, some type of "knock-out" med or anesthesia can be given, but this is not so in our hospital. So...I intend do a trial run at home. I shall take a double dose of pain meds, once they've taken effect I'll lie on my back, a hard floor for a while, to decide if the extra pills will be the answer to my discomfort problem with the scan procedure. I shall hope that I'm able get up from the floor afterwards!

A nurse made enquiries for me on the question of being charged many thousands of dollars for the scan if unable to carry it out in full, due to pain. She was told that there would be a charge, based on how much imaging had been possible in the time a patient could manage to remain in place. There might also be a charge for the special liquid one has to drink, concocted in specially personalised formula for each patient - that cost would be in the region of $175 - and definitely charged if the patient did not attend and did not cancel within 24 hours. None of that made me feel too confident!

I asked the doc. if I could wait for a couple of weeks or so before trying to do a scan, he agreed to this. It seems likely the appointment will be in late March, with an appointment to see the doc. again a couple of days later. I'm hoping that laying off the knitting for a while

longer, and avoiding much time on the computer might further improve the side and shoulder pain before scan time - always supposing that I'm not still lying on the kitchen floor trying to get up from a trial run!

Disconsolate

Just a quick update - as much for my own record as for any stray reader passing by.

Side effects from either Ibrance or Anastrozole have been causing more problems than usual of late.
Arthritis-like joint pains in fingers which I was managing reasonably well, have spread to my right shoulder and side- so much so that knitting is now unwise, and using the computer mouse with right hand also a no-no. I can manage small amount on the computer with mouse in my left hand - but it's a bit of a fumble.

I had an appointment for a PET scan this coming Tuesday (18 Feb), waited until Friday hoping that the pain might ease off after doing no knitting for several days, and hardly any computer time - but no, and pain pills do hardly anything to help, nor does medical marijuana. The problem with my femur, however, does seem improved - it looks as though to get the effect needed from the medications, I must bear the side effects. It might also be that the pressure I've been putting on my right arm and shoulder, using the quad cane for so long, has contributed to this right shoulder/side issue. :-(

Regarding the PET scan - there is no way, with my shoulder as it is, that I could lie on a hard board for 20 to 25 minutes without moving a muscle. I made enquiries of various local medical staffs. It's difficult to speak to the the people mainly involved as the PET scan people are in town only on Tuesdays, and my oncologist only on Wednesdays. It was not possible for me to speak to either. I had been told, and pretty forcefully, that if PET scan appointments are not taken up, and not cancelled, the patient would be charged. YIKES! It's flippin' expensive! Nobody was able to tell me whether, if I turned up on Tuesday at 8.30 am and was unable to "do" the scan, whether I would be charged. By this time, after many phone calls to different places, with no helpful information, I decided the best thing would be to cancel the appointment. I confirmed that I shall keep (what was to be) the follow-up appointment with oncologist on 26th Feb, as planned. Perhaps he will be able to suggest some way of dealing with my problem and I can re-schedule the scan. They were unable to find an earlier appointment for me to see the oncologist so...I shall wait. I'm limited to reading, or more likely napping in front of the TV, upon which I've become quite the expert.

Just a few lines....

I'm short of any particularly interesting news but feel I should write a few lines, if only to keep the blog off intensive care or, eventually, from flatlining. :)

I saw the oncologist yesterday - he was "running late". We waited well over an hour after a blood-letting and the usual check on vital signs by a nurse. Nothing to read other than signs on the wall about prostate cancer, lung cancer and such like.

Anyway, it seems my blood count is reasonable, low in places but no lower than expected, and not low enough to cause more time off the Ibrance or other meds. I reported to the doctor that, lately, I've been suffering arthritis-type pains in all my finger joints, and in my shoulders and elbows. I assume it is a side effect from either Ibrance or the estrogen blocker Anastrozole. He agreed, and said if it gets bad enough that I can no longer grip properly, we'll have to do something about it. Hmmm. I'd rather hoped for more, but as I can still manage to knit and type and do most things, other than opening bottles and cans, if a little more painfully than usual, I must grin (cynically) and bear it.

On the positive side, round about the same time as those new joint pains arrived, my left femur problem has seemed to lessen somewhat. I surmise that the medications have taken this amount of time to do anything noticeable enough for me to actually feel. They could have reached deep enough in my system for other, stronger side effects to emerge, along with any positive hoped for effects. Side effects so far have been some hair thinning and appetite suppression, with loss of weight (also partially caused by the lyphacitic colitis I also had diagnosed in the midst of everything else).

Anyway, my next appointment with the oncologist is at the end of February, with another CT scan to be arranged shortly before that. The doctor wants to make sure that nothing has changed in the 3 months since the last CT scan. More anxiety about results await, but I'll have a few weeks' grace before I need to worry, so I shall try to push it out of my mind.

NEWNESS

2020 has begun, for me, with a variety of new stuff. Even as I prepared this post there came a new word to add to my vocabulary. I had to look up this word from the quote on the right: Evanescent definition: vanishing, fading, fleeting. Also new for me this New Year: a new(ish) computer with new operating system, as mentioned in earlier posts. Another newcomer will be a new washing machine, delivered next week. We were reliably (I trust) told that the issue which caused our washer to stop in mid cycle, a few days ago, is not repairable - the major mechanical part involved in the breakdown of our 15-year old machine is no longer manufactured by Maytag. So, off we had to go to the Maytag store to order the 2020 version of our old washer.

What else is new for me, this New Year? A new piece of knitting - a shawl knitted in 'V' shape, up one side and down the other in some pretty but slightly awkward yarn called Homespun, I chose a colour called Tourmaline (a rich dark blue-green) . The photo comes from the online free pattern.






Also, on the knitting front, I forced myself to finish the disliked work of joining together multiple 8" squares I'd knitted during the weeks before Christmas, while playing with a bunch of colours, mixing and matching. It's not big enough for a blanket but will provide a warm throwover for the knees, or a colourful piece to "pop" - somewhere in the bedroom when Okie weather returns once again to sweaty heat.

Astrologically, there's something new too. Pluto and Saturn, planets which I believe have been bugging me for the past 2 years health-wise, moving to-and-fro opposite my ascendant and close to natal Mercury, are at last moving forward. They will soon be out of range (I hope!) It has been uncanny and at times unnerving to note how health-related stuff coincided with the movement of these two planets. Pluto and Saturn have, from time immemorial, been known to have a few unpleasantnesses to dole out when transiting close to personal planets in the natal chart. My own experiences include diagnosis of breast cancer leading to lumpectomy, mastectomy, excision mastectomy, radiation. For the metastatic bone cancer in femur and hip: local procedures and radiation; not to mention a variety of medications - not particularly nasty in themselves, but with nasty side-effects such as joint pain, nausea, hair thinning (not all lost - yet!) Lymphatic colitis emerged in the midst of all this, and led to colonoscopy and various remedies. It does often turn out that the unpleasantness experienced when these planets visit was a necessary development - something which needed to happen in order for the native to move on. Hmmm! It's a great pity that the effects of those two planets' transits are not more... erm.... evanescent!

Just a Few Lines...

Just a few decades ago, when what we now refer to as "snail mail" was our main means of written communication, "Just a few lines...." would often begin our pen and paper missives to friends and relatives. Or, perhaps: "Dear... I hope you are well. Just a few lines to let you know...." Not very original but a helpful way to get started, pen in hand.

All of which was simply to say that these are just a few lines to record that my CT scan, last week, turned out better than my darkest doubts had imagined. A nurse, with directions from the oncologist, called me to say that the scan indicated that there have been no negative changes, in the chest, abdomen and pelvic areas, since my last scans. The problem in my left femur, causing pain-when-walking, has remained stable. I'd have liked that to have improved some, but am thankful for small mercies. The radiation oncologist (a different doctor) had indicated to me that, if requested, he would give the left hip/thigh area another shot or two of radiation. I am considering that option, will contact him for his further opinion after he, too, has seen the scan results.

I worried non-stop about those flippin' scan results! Drove myself into a bag of nerves during last weekend. I'm now feeling more relaxed (until the next time). I dread those kinds of waiting times; procedures I can deal with, it's the not knowing that really gets to me.

Various Goings On

The weather here in southern Oklahoma is, at last, after days of temperatures in the 80s, acting in more autumnal fashion. Today it's actually cool to cold outside - 49 degrees, windy with a storm in the offing. The trees haven't yet donned their fall colours, after a few more of these cooler nights, it'll happen.

In other news, a routine blood test on 16 October, to discover how the targeted therapy medications are affecting my blood quality, showed that the white cell count was below desired minimum - same for platelets. Oncologist told me to take a second week off the Ibrance capsules - these are routinely taken for 21 days with 7 days off each month. This time I had 14 days off. Blood test yesterday showed figures had bounced back to an acceptable level, so off I go again with the Ibrance. I'm to have a CT scan next week - to check whether much has changed for good or for ill since my last scans around 6 months ago. Not looking forward to that!



The problems I had in obtaining a refill of my pain medication last month happily did not recur this time. Our usual pharmacy has changed their wholesaler. The medications I take for pain-while-walking now come from a different generic manufacturer. I was worried that these might be even less effective than those I've been taking, but, though it's a little early to be sure, I do suspect that these might be a tad more effective.

Further afield, Brexit bumbles on...and on....and on. When, oh when, oh when will it end? The part of it all that affects me personally is the currency exchange rate, it affects my two pensions coming from the UK. The rate has been volatile for a couple or more years, diving down then up, down again etc, depending on what had been Boris Johnson's or Ms May's latest failed attempts at bringing about a deal.

In the USA the season known as "The Holidays" is almost upon us. I'm glad to be here, still, to see it once again! Hallowe'en decor has been showing up for the past few weeks in front yards - ghosties, ghoulies and long leggedy beasties, spider webs and witches...you know the drill. We now await the Trick or Treaters on 31st of the month. We had very few last year - disappointing, because it's fun to see the imaginative costumes the kids come up with, and the excitement on the faces of the littlest ones. Perhaps the custom is starting to go out of fashion, for one reason or another - safety, perhaps, and many communal organised Hallowe'en costume events. Next up: Thanksgiving on 28 November, followed by You-Know-What-mas, a month later.
Ka-ching...ka-ching!

On the knitting front, I'm using a big skein of pink "ombre" tinted yarn to make another, longer scarf. It's something I can pick up and just knit, without need to refer to a pattern. I love seeing the changing shades of pink appear, apropos of which, I noticed that my husband is reading "The Secret Lives of Colour" by Kassia St Clair. I shall read it too, when he's done with it. Back-cover blurb: "From the scarlet women to imperial purple, from the brown that changed the way battles were fought to the white that protected against the plague, from kelly green to acid yellow, the surprising stories of colour run like a bright thread through our history." Several varieties of pink are investigated, for example: Baker-Miller Pink; Mountbatten Pink, Puce, Fuchsia; Shocking Pink, Fluorescent Pink, and Amaranth. Maybe some of those will appear in my scarf.

Grouch, Grumble, Whine....

A frustrating and tiring few days put me in a dark mood this week.

Acquiring a refill of my pain medication - a generic of the brand Norco - is becoming more difficult by the month. I obtained the paper prescription, signed in ink by my temporry oncologist, as required now by law when medications involving opioids are refilled. We took the prescription to the pharmacy we've used for the past 15 years. On being presented with the written prescription the rather unhelpful young lady at the drop-off counter told me "Sorry we can't fill that, we are getting a new wholesaler and we have none in stock. You'll have to go to another pharmacy." "Well", said I, "I could wait for a day or two, I still have a some tablets left. Would you have the medication available in a few days' time?" "No, we don't know when, or if, we'll have them". A bit fishy, that!

We drove to CVS pharmacy just across the road, to be told by a kindly young guy at their drop-off desk. "Sorry, we're all out of those tablets, people coming from the pharmacy across the road have cleaned us out. We might have some by early next week. I'd try Walgreens - not Walmart as they'd likely send you away as you're not a regular customer."

Onward to Walgreens. These pharmacy visits entail a fair amount of walking, and I, the painfully walking wounded one, was not delighted by the fact that pharmacy counters in the large stores are right at the back, farthest away from the entrances - so lots of painful steps for me. Even dosed up with the pain pills, using a quad-cane, walking far is not easy for me.

Walgreens, after checking my identity and Medicare details, seemed willing to fill my prescription. They were very busy - lines forming at the pick-up and drop-of counters all the time. They said to come back to pick up the tablets in around 45 minutes. We returned over an hour later. Medications not yet ready for me, so we decided to wait until the next day to collect - to avoid yet another trail to the back of the store that day. Later on, a phone call from the pharmacist at Walgreens told me that I would need the doctor's further authority for the number of pills required by the prescription. (I'd have thought that the prescription itself was that authority!) The doc had allowed for 8 tablets per day (for a month) instead of 6 per day. New regulations mean that extra authority from the doctor will be required for that amount of tablets. I told the pharmacist that, as I take only 6 tablets per day, could he please just fill the prescription for that amount? He agreed to do this, and changed the number of pills stated on the prescription. So, yet another trip to Walgreens the next day, though with rested legs.

At last, I had the tablets in my hot sticky hands. I say hot and sticky advisedly. It was around 95 degrees in town during these adventures, adding to my annoyance and discomfort.

I had hoped that Walgreens might deal with a different generic manufacturer than the one used by our usual pharmacy. Sadly no, that didn't happen - same generic manufacturer, who shall remain nameless. I am convinced, as are many people online, that the generic of Norco made by this particular manufacturer is not as effective as the brand medication itself, or pills made by several other generic manufacturers. It is thought, by regular users of this medication, that not long after December 2017, when panic erupted over deaths by addiction to opioids in the USA, especially in Oklahoma, the effectiveness of these tablets as pain relief medication took a nosedive. Those who had been taking the medication before and after the opioid crisis suspect that some manufacturers have adjusted make-up of these tablets, possibly by changing additional ingredients used in their manufacture. I suspect (a wild guess on my part) that the way the tablets were being used by addicts for purposes other than pain relief, may have been the reason for change. Addicts crushed the tablets. Perhaps some generic manufacturers added an ingredient to prevent easy crushing which, in turn, could also prevent proper digestion of the pain-relieving ingredients. So those of us who genuinely need pain relief go to the back of the queue, we don't matter!

Pain relief from the pills, for me, is minimal but better than nothing. Morphine at the strengths tried already brings even less relief. I'll be asking the temporary oncologist, next time I see him, if there's something else I could try. I'd buy the brand name Norco tablets, even just to try, if they weren't so ridiculously expensive - in the order of $500 + per month!

Whinge, whinge, grouch and grumble! A wheelchair beckons!

What to Write About?

Time to write something - but what to write about? Nothing has changed much since my last update, in relation to medical matters. I have found, after brief experimenting, that medical marijuana tincture - a drop under the tongue, does help to increase my appetite and decrease any feelings of nausea - side effect of my two anti-cancer medications. That's a worthwhile finding - I'd like to put back some of the weight I've lost. No more vaping the MM though, until the current findings about vaping in general are clarified as to whether nicotine or THC (part of marijuana) are involved - could even be both, I suppose. Pain-when-walking remains my main bugbear. Pain relief from my pain medication is good for a short time only, once it has kicked in. Sometimes I think the relief is improving, but not consistently, the following day can bring it back seemingly worse than ever at times. The radiation oncologist said, in regard to this, that bones are not consistent. It's something to watch and note. Perhaps the improvements will, as time goes by, last longer and longer - this is what the oncologist suspects, and I can but hope!

News on a wider scale continues, for me, to revolve around the UK's pantomime known as Brexit, and the USA's pantomime known as President Donald Trump.

Brexit news and the current doings of Prime Minister of the UK, Boris Johnson (aka Donald Trump lite), become more unbelievable by the day - even by the hour this week. I didn't believe anything could possibly make Donald Trump appear to be more presidential - but this week's doings in the UK did it for me! It took a lot though. On President Trump, there's a long-running thread at Quora asking:

https://www.quora.com/Whats-the-best-Donald-Trump-joke-you-have-heard

I read through most of the thread but found most of the jokes a tad lame. Maybe my sense of humour has been lost along with my weight! This joke was the only one that managed to raise as much as a chuckle:

Trump is doing a meet-and-greet at a crowded venue and his security detail is being extra watchful. One of them is a new guy and he’s extra jumpy.

Suddenly, a gunman bursts from the crowd, aiming his weapon at the President. Pandemonium ensues. The rookie bodyguard screams “Mickey Mouse!!!” at the top of his voice and this startles the would be assassin to the point that his aim is off and the shot goes over Trump’s head.

Some bodyguards wrestle the assailant to the ground, while others hustle the President to safety. Disaster averted.

Later, during debriefing, the head of the security detail congratulates the rookie. Without his quick thinking, he tells him, the President might very well be dead.

“But I’m puzzled” he said. “Why on earth would you yell 'Mickey Mouse'?”

“I’m new”, explained the rookie, sheepishly. “I panicked. I meant to yell 'Donald! Duck!!'”

Updated and Backdated

Quick medical update first: The oncologist and the radiation oncologist I saw earlier this week on follow-up appointments both gave me a thorough "going over", declared me good for a while longer - well, anyway until my next appointments with both I guess; that will not be for 2 months. Perhaps I'll not be shuffling off before then, barring accidents and the unexpected, fingers crossed!

The temporary stand-in oncologist advised, with regard to pills for my pain-while-walking, that I can try using a double dose of the the minimum dose extended release morphine tablets, prescribed in July by another stand-in oncologist. The pills as prescribed had had no effect on my pain, so I just didn't take them and relied on the previous pain pills I'd been using. I'm now trying this new regime, with my old pain pills available for "break-through pain". I'm still not overly impressed with the morphine, the effect so far isn't as beneficial as my usual pain pills, but maybe lasts a little longer. I shall give it a longer testing and experimenting time.

I'm not sure how much longer Learning Curve on the Ecliptic will survive, in view of the fact that I shall have to buy a new computer before January 2020. Windows 7 operating system, which I use, will no longer be supported by Microsoft after that; this old computer has a hitch in its sound system so needs replacing anyway. I'm posting much less frequently than in years past. Survival of Learning Curve, at all, will depend on how compatible I find myself with Windows 10 once I've replaced my old faithful machine and operating system.

It was around this time of year in 2006 that I first jumped into Blogger and tried my hand at blogging. For many years I posted daily, initially about astrology, later on a variety of topics. In 2015 a kind commenter suggested that I should write some posts telling a little about my life. I was wary of doing so at first as it seemed particularly self-indulgent. Ah well, a bit of navel-gazing has never hurt anyone, so I began a weekend series of posts on my own life story. By the end of the series I found that I had actually enjoyed those backward glances.

Thinks: With a bit of filling out, this post could stand for the full week ahead, so...below is a list of links to the 8 parts of that self-indulgent story of my life mentioned above. Any stray passing reader might be brave enough to sample an episode - or two - or perhaps just take a look at the pictures.

Self Indulgence - episode 1
Self Indulgence - episode 2
Self Indulgence - episode 3
Self Indulgence - episode 4
Self Indulgence - episode 5
Self Indulgence - episode 6
Self Indulgence - episode 7
Self Indulgence - episode 8

Tardy Update-ish

Well....I guess it's time I posted an update here, but there's not much to report at present. Perhaps after Wednesday I'll have news worth recording, after two medical appointments - follow-ups. These will be mainly in relation to issues following my radiation course a few weeks ago, and checking state of blood after several weeks on the Ibrance medication - those expensive pills for which, amazingly, I haven't yet had to pay anything out of pocket.

Medical marijuana news: I've decided to stay off it for a few days. I hadn't been taking much anyway - a drop of tincture once or twice a day. The sleepiness, my only consistently noticeable effect from MM, has been increasing daily, along with a general feeling of being "not quite with it". Up with that I will not put! No MM today, and already I feel slightly less doped-up. There were a couple of tries at vaping a few days ago, no more of that until I read more of recent reports that vaping (not sure if re nicotine or marijuana) has been causing some kind of lung disease.

Cartoons below came from my oldest (in both senses) friend in the UK - she was born a week after yours truly.

Medical Update MM-Wise

YAY!! I received my Medical Marijuana card on Saturday! We visited a dispensary, bought some tincture, a gummie and a plastic straw filled with "High Honey", as my first-time try-outs. I tried the last-mentioned on Saturday evening - no effect! I did fall asleep in front of TV late evening - but I do that most evenings anyway. This morning I tried a couple of small drops of the tincture (under the tongue), which haven't done anything so far. Finding the right stuff for my needs, and the right doses, will take time. Everyone is so different, useful advice can't really be offered. I'm looking for help with my pain-when-walking and occasional nausea and loss of appetite. Experimentation is recommended, always starting with lowest dose. The woman in the dispensary said to even cut the gummie into 4 and take a quarter only at first - I'll experiment with that later. We shall visit another dispensary, to buy the necessary equipment to do "vaping", the dispensary we visited on Saturday was out of stock. I really do not fancy smoking the stuff, vapor seems like the next best thing.

The past week saw irradiated skin around my chest and under-arm areas peeling away, leaving one painfully awkward raw place under-arm requiring a dressing. I had to seek assistance and advice from a nurse. Glad to say that, with husband's assistance with the dressing, it's now much less raw and improving daily.

Frustration Station (Medical Update)

The blog has been silent for a week. It was a week filled with annoyance and frustrations initiated by our visit last Saturday - as mentioned in the second paragraph of my previous post, above. That appointment, at a local Medical Marijuana dispensary, did not work out at all as expected! Rather than bore the underwear off any stray reader, I'll try to nutshell the tale, but it isn't easy to tell briefly. This could well ramble on.

I, allegedly, had the last appointment of the day at a local dispensary where I had assumed a doctor would be present to recommend (or not) medical marijuana (MM) for me. It turned out, however, that there were numerous "walk-ins" to be dealt with after me - the small waiting room was heaving with these when we arrived.

A good imitation of chaos ensued.

My "interview with a doctor" consisted of a few minutes talking to an elderly guy on a laptop screen. The doc seemed less interested in listening to what I was telling him about my ailments than in attaching his own labels to me. After a few minutes he gave the assistant some code numbers. That was that, doctor-wise.

I was then handed over to an assistant and "the boss" to provide my documentary proofs of identity (my US passport), proof of residency in Oklahoma (my Voter ID card), and my Medicare card. These were scanned or photographed, and a photograph was taken of me (passport style). There were some mumblings about proof of residency, and there being a need to submit the top sheet to the deeds to joint ownership of our house. This should have been unnecessary, as the Voter ID card was one listed as acceptable proof of residency in the state. We agreed to send what they had requested, by e-mail, and the "boss" would call me later that evening to finalise things and get my debit card number for payment of $20 to the Oklahoma Medical Marijuana Authority (OMMA), and submit my application to OMMA. I had paid "the boss" $75 in cash for his part in the process, for which he gave a peculiar type of receipt on my husband's cellphone - something we have yet to decipher. All the time we were there, by the way, "the boss" guy was dealing with at least one, sometimes two, other applicants concurrently with me.

We went home, searched for house deeds, found what seemed to be appropriate and sent it to the e-address we'd been given. Then.....nothing. No phone call that evening, none the next day nor on the day after.

We visited the dispensary on Tuesday, explained what had happened (or hadn't happened) to a lady who seemed to be in charge there. She made a phone call to "the owner" (as in "the boss") who allegedly told her he would call us that evening. He didn't. More calls to the dispensary followed next day, with promises made by recipient to call me back. Nobody ever called back.

It was Thursday by now - I had steam coming out of my ears. Another call to the dispensary - this time I let it rip a lot more than I had during past phone calls. The guy at the other end of the line said "We were only hosting the event, it was nothing to do with us". GRRR! I told him that as hosts to something, they had to take some responsibility for what had gone on. He promised to call the owner of the outfit who had "organised" Saturday's chaotic event. Nothing further was heard by that afternoon.

At some point, someone had given me a phone number which led to an answering machine at the offices of "the owner", in Oklahoma City. I decided to leave a message on it. I guessed my message would be just one of thousands and like everything else I'd done, be completely ignored. The answering machine cut me off after a few seconds, but I kept going back each time, continuing my call, ending with pleas to "please, please, please will somebody ring me back!" Ten minutes later somebody did. It was "the boss". That turned out to be a very long phone call, an hour or more with lots of waiting time included. What had gone on on Saturday was repeated over again, as though Saturday's visit had never happened. This time, eventually, I was asked for my debit card number and that was that. He said I should receive confirmation that my application had been received by the OMMA, and that my MM card should be with me in around 5 to 7 days - possibly by Wednesday next. I got the confirmation from OMMA within a few minutes.

On reflection, and upon further reading around, using name of "the boss", I began to realise that there is a veritable flood of applicants in the state, a never-ending flood it seems, and "the boss" and his organisation are trying to deal with the flood, but without adequate means (or so it appears to me, now).

Fingers crossed that the train, having at last left Frustration Station, will arrive at the proper destination bringing with it my MM card, to enable me to buy some MM to assist with my pain-when-walking and my nausea/loss of appetite.

Medical Update plus Something Completely Different, with Ian Lang.

Radiation therapy course finishes this morning! YAY!!!!
My second 21 days of Ibrance began mid-week after 7 days free of the demon pill. Oddly enough the loss of appetite and nauseous feelings increased during that 7 days off - I was expecting the opposite. I really need to be eating more. I'm oncologistless at present, so I asked one of the senior nurses about the nausea. She very kindly sent a couple of prescriptions to be picked up - 2 different nausea medications specifically for problems caused by chemotherapy and other cancer-related therapies. One of these medications worked a treat on the first trial, not as well the second time - but I'm to take them alternately, and for a particular reason didn't do that initially- better luck next time, I hope.

On the medical marijuana front, I have an appointment at a local MM dispensary late tomorrow afternoon (I managed to get their last appointment - my stars must have been aligned!) I'll see a visiting physician who will (I hope) give me a recommendation letter to send to the Oklahoma Medical Marijuana Authority, so as to get me an MM Card. That card will enable me to buy product at any dispensary in the state. This appointment will cost me $75, a little cheaper than expected, and because I'm on Medicare the cost of the MM Card will be just $20 (as against $100 for those not on Medicare or Medicaid.) Around 10 days, after sending (online) proof of identity, residence, the recommendation letter, with a digital photograph of myself, and my Medicare card + the dosh, all to the OMMA, I shall hope to be set up to buy something which might help on several fronts.

And now for something completely different....

I'm calling on Ian Lang of Quora to provide a lighter note. As any regular readers will remember, Ian has very kindly given his blanket permission for me to use his writings on my blog. Here's what he had to say - waxing all poetic for a change - in answer to this question.

What do British people think of Boris Johnson as their PM?

Non-British readers will likely need a translation of "soss" : it's short for sausage; and should any readers in the USA be thinking of 'chips' as known in their world (= a bag of crisps in the UK), chips are something akin to steak fries in the United States - certainly not like French fries which are way too skinny for their own good!
So:

What do British people think of Boris Johnson as their PM?

I think unlike John Masefield, I’ll stay away from the sea

And focus all my wishes on soss ’n’ chips for tea.

I think I’d not like to be at work in summer’s hot enthrall-

I think that is much better though, than watching the football.

I think I really can’t be arsed, with who it is in charge;

Johnson, Corbyn, Hunt, Leadsom, or that bloke Farage.

For I think that in some future age, it will be so much fooey.

In five billion years, as well we know, the sun will go kablooey.

And all that we have said and done and all our silly rhymes

Will be vapourised. Including those with lines that don’t suit the rest of the metre and aren’t made into couplets.

I think then, that we should not dwell on our human worries of toss,

Yet cast our minds to glorious times, when there are chips, and soss.

And splendidly, egg as well, if you’re lucky.

Quick Journal Update on the Medical Front After Wednesday's Follow-Up Appointment

After my radiation session yesterday afternoon, we had to take a 40 minute drive to a Cancer Center in a neighbouring city, for "Lab Work" (blood analysis) - in connection to the Ibrance therapy I've followed for the past 21 days. The purpose was to discover whether Ibrance therapy has affected my blood too severely to continue treatment. It has affected white cell count, but that was expected, and in my case it is not a severe enough change to preclude continuation of the "targeted therapy" Ibrance offers. I was given this information, not by my usual oncologist, but by a young doctor who informed us that my oncologist left her position at the end of last week. That was a surprise! He also said that, for a time, our town will not have a visiting oncologist, the previous doctor's replacement will not be "doing" the Cancer Center in our town. Ah well, I suppose that something will be sorted out for us sooner or later.

The young doctor we saw yesterday tried to be helpful in regard to my severe pain-when-walking issue. He suggested that I try a different medication, at least until the radiation and Ibrance effects fully kick in for me. He suggested extended relief morphine tablets, and prescribed a month's supply, one pill twice a day. If there happens to be any "break-through pain" I can still supplement with my usual pain pills - this need is likely to be fairly infrequent. As it turned out, not as infrequent as I'd hoped. I took one morphine pill at 7.30 PM but it had no effect whatsoever on the pain-while-walking. I'm back to the pain pills already. Disappointing! I'll make further enquiries about the morphine tablets tomorrow - perhaps it will take time to get into the system - or perhaps the dose prescribed is too small.

The doctor we saw also advised me as to medical marijuana. He said that, in these circumstances, considering current lack of oncologist, it might be preferable to use the doctor who visits the medical marijuana outlet in our town as my recommending physician. Now I need to look into what'll be needed for that, in addition to an extra payment of $100 for the doctor's fee. The next visit of the speciality doctor to our town's outlet for MM isn't until 8 August.

We shall now await news from the specialist pharmacy in Texas who deal with Ibrance, as to what I'm going to have to co-pay for another 21 days' tablets. I do have a nice 7 days off the demon pills now though, to allow time for my body to re-orient itself a little.

Another Medical Update

Not a lot to report...let's see....

Radiation ongoing, usually for 5 days per week, on chest wall area, it will continue for another 2 weeks. I'm now needing to cover the radiated area with some soothing cream, containing a little lidocaine - expensive at the pharmacy and not covered by Medicare ($45-50 per tube). I was pleasantly surprised when the nurse gave me a tube, paid for by a charitable foundation. A whole pile of the stuff had been provided by the foundation for radiation patients' use.

Walking is still very painful when my weight goes onto left leg; pain pills at maximum dose help a little for a few hours, but do not eliminate pain. Radiologist says that if pain doesn't improve in a few weeks he'll consider more radiation shots, but healing will take time.

Re oral medication: The Ibrance daily doses are coming up to the 21-day cut-off period, when 7 days off it will follow. I have to go to a nearby town for blood test in relation to this on Wednesday, to make sure the medication hasn't adversely affected my blood count, also to establish whether this, very expensive, medication is to continue, and at what cost. A substantial co-pay is going to be needed this time, for sure.

I've been adjusting my blood pressure medications recently, the usual dosage was proving to be too strong, probably due to my loss of weight, and/or as a side effect of the pain pills. To be on the safe side I saw our GP on Thursday, to check that the way I'd adjusted dosage was the best way. It was.

I mentioned to our GP that I'm starting to lose my appetite (again), probably due to the Ibrance meds. I want to put weight on now, not take it off! I asked whether he would recommend that I apply for a medical marijuana license to help with appetite, and perhaps pain also. He offered me a prescription for a medication that is a synthetic version of marijuana, or the parts of the herbal version that are helpful: Marinol (or its generic equivalent). I decided to accept a month's worth - it cost me $135 for 30 tablets. Doctor said that my oncologist would probably feel comfortable to recommend herbal medical marijuana, which could eventually work out cheaper, after the $100 dollars for a license. He prescribed a low dose of the Marinol generic (due to my age. I do NOT want to get dizzy and fall!)It is to be taken at bedtime. Not much to show for it after just three tablets. I'm hoping to see the oncologist on Wednesday, and will ask then about possibility of medical marijuana rather than Marinol. I've read that Marinol can have some nasty side effects that the herbal version does not have.

It's That Day Again + Medical Update.

Happy Indi Day - for me also - kind of. I have no radiation or medical appointments until Monday! Also, I'm happy because the course of radiation related to lesions on my hip and leg is done - for now anyway. The treatments on my chest wall will continue for a few more weeks - as a precaution - making the sessions shorter.

Pain pills are still necessary, but not working especially well. Dr K. kindly provided a refill prescription yesterday. Such prescriptions, for medications which include any kind of opioids, have recently come under a spate of New Rules, to safeguard those who would use opioids for purposes other than pain relief, sometimes accidentally killing themselves. That is all fine and good, but the complications involved in obtaining these medications now mean that even cancer patients cannot obtain refills without the requisite prescription, on paper (no fax or e-mail) signed in ink, by the ordering physician, and handed to the pharmacy. These rules were followed by us yesterday afternoon - to the letter. What did the pharmacy say? "Sorry these are not due until tomorrow (4th July) and we are closed for Independence Day so we'll have the refill ready on Friday". My response: "What am I supposed to do tomorrow, when I run out?" She: "Do you want to pay for a day's worth, the insurance will not pay until tomorrow and we are closed." Me: "So, as you are closed, should you not compensate for that by filling the prescription today?" Nope! If I had agreed to pay for one day's tablets it would have cost me $60+ for the generic. Ridiculous! I guess the fact that I'm English, and that Independence Day is the fly in the ointment, didn't help ;-)

Dang! I was cross and getting hotter under the collar! I'll manage, but some people in the same position might not. This is so unfair to those who need opioids for all the right reasons.

I do suspect that the generic of my pain medication, stocked by our pharmacy, doesn't work well, possibly due to certain cheaper "fillers" used. Comments online by those who have been taking the pills for years have indicated that this is the case - do I believe online commentary? Hmmm? I had, earlier, asked what the charge would be for the branded version of the same medication, not covered by insurance. One would, I was told, have to buy a full 100 tablet bottle of the original branded version, its cost, with discount, would be $500. Sigh. The generic, to be collected Friday, will have to suffice!