Sunday, August 11, 2019

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.

Friday, August 02, 2019

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.

Friday, July 26, 2019

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.

Thursday, July 18, 2019

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.

Sunday, July 14, 2019

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.

Monday, July 08, 2019

Jeffrey Epstein....Again!

My post of January 2015:
Jeffrey Epstein -
Le scandale du Jour.


Yesterday (The Daily Beast):
‘LONG TIME COMING’
Jeffrey Epstein Arrested for Sex Trafficking of Minors


Billionaire pedophile Jeffrey Epstein was arrested for allegedly sex trafficking dozens of minors in New York and Florida between 2002 and 2005, and will appear in court in New York on Monday, according to three law enforcement sources. Saturday's arrest by the FBI-NYPD Crimes Against Children Task Force comes about 12 years after the 66-year-old financier essentially got a slap on the wrist for allegedly molesting dozens of underage girls in Florida.

For more than a decade, Epstein’s alleged abuse of minors has been the subject of lawsuits brought by victims, investigations by local and federal authorities, and exposés in the press. But despite the attention cast on his alleged sex crimes, the hedge-funder has managed to avoid any meaningful jail time, let alone federal charges.

Better late than...