Catena Expressions

NED = no evidence of disease

Yes! The immune treatment (the only one) worked and M's immune system nailed the melanoma.

Next month, another lab (and all his labs since Sept have been in normal range) and the final dr appt for the clinical trial (tho M only did one infusion Aug 31st due to side effects.

Jan - another PT scan to keep an eye on what M's immune system is doing.

I have a photo of the 1st PT scan showing the melanoma hotspot in his throat and the recent one showing... normal. I'll post it somewhere for viewing - it is most remarkable. Normal! Tho Dr Lewis was quite playful about it - says, you're NED, see ya later (!!) but then said, not in remission, not cured but this is what they hoped for. Most people go thru a year of infusion to reduce the melanoma and have to remain on infusions to maintain the size. If M makes it 2 -3 years without a recurrence, then he's home free.

We are amazed and thankful.

So now back to our regular lives - what a joy!

some FOs and update on M

M has had about a dozen side effects since his first infusion August 31st. The worse was diarrhea which the team finally prescribed prednisone for. He missed about 7 days or half days of work. He had a few side effects which puzzled everyone (puffy lips for instance) which he had to have a steriod lip ointment to resolve (that took almost 4 days!).

So it's been a roller coaster here. He had lab work and dr's appointment the day before his next infusion but they postponed the infusion due to the prednisone. His next appointment is next week - 6 weeks after the first infusion tho they are supposed to be 3 weeks apart at this stage. We'll see what happens next.

I finished a number of things all of handspun (so nice to reach into the stash and find what I want to play with!)

This is a crocheted Gotland/Shetland/alpaca granny square afghan I am going to send to a friend.

And a knitted alpaca/silk/wool "Color Reflections" shawl for my neighbor who just started chemo for bladder cancer. Deb Robson knit a couple of these and I couldn't resist the bait.

 

For me - a knitted alpaca/Shetland/silk sweater. I wondered how it would be to run the triangles from cuff to neck and that was my goal. I wore it out and about today - it's light and comfortable and I am very happy with it.

 

I neglected to have M photograph the sleeves to show the triangles working up them to the neck.

Mary sent me Robert Macfarlane's new book - Landmarks. It is soooo good. I would quote my favorite paragraphs but I am afraid there would be no stopping.  I was amused to see both the words "consider" and "cadair" in the glossaries. Love it. Thank you, Mary, you know what this means...

Looks like I can keep the free version of typepad so I will be able to do updates here as time goes on. This ought to be reminder to put a list of my favorite blogs on my laptop so I can link to them. I still use my desktop for most things and just use the laptop for on-line but that means right now, no links. Or rather... too lazy to search them out.

Back to plying a wonderful white Shetland from RiverBend Farm. This is where the e-spinner is a joy.

Hope all is well out there...

Sept 3 2015

Last Friday, M had another PT scan for the baseline for the clinical study. It showed the possibilty of the melanoma is a bit larger in his throat which is about what we surmised. Not a great deal larger, however. No other hot spots which was a great relief.

M had his first immunotherapy infusions on  Monday. This is not chemo or radiation - neither of those would work for him.

He had another lab workup for the baseline (they especially want to watch his liver) which came out even better then the one 3 weeks ago. So he was accepted into the clinical trials.

About an hr into the first infusion (it's a 90 min infusion), he developed a fever and allergic reaction so they stopped the first (that's the one Bayer-Squibb is donating) and waited to see if his immune system would take care of it. It was determined that the infusion was going into his system fast enough to overwhelm his immune system which, naturally enough, protested. After a dose of benadryl and tylenol and a hour and half after the stop, the infusion was restarted at a slower rate for a half hr then kicked up to the regular rate. A half hour was indicated to watch for reaction before the 2nd drug was administered. That one takes an hr so we were out of there at 7:30. We thought we would be home by 5 but not til 10 pm since we had to eat dinner.

Our groomer who lives nearby came over to let the dogs out and feed them so they were fine - but Riley is crated when we are gone - he would have been in the crate for 15 hrs without Katie! You can imagine how grateful we all were for her. Except the smallest dog - Dori - who Katie said was the guard dog and warned Katie she did not belong in the house. Let that be a warning to anyone who sneaks in to feed the dogs while we are gone!!

M did have a couple allergic reactions the day and 2nd day after the infusion - minor enough for benadryl to take care of the rashes.

I guess that's all for now.

I am trying to update on Facebook so if you are on it and want to friend me - go ahead. My e-mail should get you to my page.

 

8/8/2015 Update on M's melanoma

I've been debating whether to post the latest about M's melanoma here but unfortunately I lost a lot of e-mail addresses when I got the new laptop.... so if you haven't heard, this is the latest. And if you have, sorry for the repeat.

We've been anxiously waiting to hear the results of the brain MRI, bloodwork and tissue samples. Finally last Wed we got news.

It was totally unexpected. Well, part wasn't - we figured he had the BRAF gene. That's a break in the animo acid at E600V. No. He has the break at L597U (I think it's U) which is so rare that this dr had not seen it before.

The brain MRI was clear.

BUT! To do something about the throat melanomas means M has to undergo a risky clinical trial using 2 separately approved FDA drugs in combination. One drug the insurance co will pay for, the other is paid for by the manufacturer.

It entails 12 weeks of every 3 weeks infusion of 2 drugs then 48 weeks of infusing of the one drug (the one the manufacturer is donating).

At the end of the 12 months - next summer - Mike, ideally, will be melanoma free.

There's side effects, this is very toxic and it's scary as hell. However, as his melanoma dr says, there's no options - even if the melanomas in his throat are removed, his immune system is being overrun by the disease and the melanoma will reappear somewhere else. And surgery will lower his immune system making that reappearance a given.

The drugs are nivolumab and ipilimumab- you can google and find out all about them. I really cannot bear to link to the side effects - scares the hell out of me.

Several of my friends told me how composed I seem about this. They should know better - but, let's just move on, shall we?

So, now we are waiting for the insurance to approve of baseline CT scans and another brain MRI for the clinical trial. As soon as M has those, within a day or two he will start the infusions and lab work at University Hospital.  I'll post how that goes but the data manager says the first infusion is easier then the 2nd and 3rd which is when the immune system takes the hit and then side effects can roll into gear.

You know, I am gardening, spinning, riding my bike, rereading Diane Ackerman (Deep Play this week) and trying to stay as composed as my good friends think I am.

If you didn't get the group e-mail, leave me a comment and I'll add your e-mail to my address book. It's so annoying to realize I didn't update my list before shutting down the old computer's link to the internet....

I also intend to bail from the blog in November when my typepad account comes up for renewal. I don't know yet if I'll play with a free blogging site or just let it all go. One of the fun things to this blog has always been Mike's photographs. I'll have to see how we both feel in November.

This is one of my favorite photographs - taken at Red Mountain a few years ago. It reminds me how much fun we always have and how we need to get back up to the red canyons for walks. Soon.

 

 

August 4, 2015

The crochet afghan of handspun Shetland (the green is from OR (Other Ram) Shetland ram - with black alpaca and blue silk), leftover natural CVM from various farms, leftover natural rambouillet, ditto and the emsket overdyed green Shetland. It covers the top of our queen bed. You'll see Obi on the upper right side on a pillow and Peaches watching in the doorway. Those two play extravagantly and really, we should make them stay awake more in the daytime so they are quieter at night (fat chance).

I crocheted the afghan one direction, then turned and worked another. In between I played with running some rows diagonally. It's simple and was fun to play with while waiting for news.

News: still waiting on bloodwork and tissue tests to find out which way to go for M's treatment (depends on whether he has the gene for melanoma or not).

Best news: the brain MRI did not show any hotspots. So far, so good.

Obi Cannoli - the most fun to have around.

Treasure Island garden along the Cache La Poudre River

M and I took Riley for a walk along the Cache La Poudre River and wandered over to the Treasure Island gardens there. The gardens have changed considerably since they were flooded 2 yrs ago. The change seems an improvement. I have been thinking of removing some of the orange single and double daylilies I packed along with me for decades. I have about 6 places where they are not thriving and a couple where they are. If I took out the nonthriving ones... well, maybe I can get an idea what would work from these areas:

My gardens are about a month ahead of these - I'll have to keep that in mind. The red poppies are midst bloom, mine are already gone to seed.

My yellow yarrow is finally blooming - in a pot! I thought I'd have a big clump of it by now, 2 yrs after planting it...again, possibly the rainy weather for the last 2 yrs.

I pulled a lot of bindweed as we walked - but it does look cute nestled out of my reach in this area.

 

July 30, 2015

I just updated the "turquoise" post with a photo of the finished shawl.

Here's the new project while waiting (still) for tissue test results, brain MRI results and bloodwork results. It's been 3 weeks today since M saw the CU melanoma clinic's dr.

I started knitting but got bored and switched the size G crochet hook. The green is Shetland with a bit of silk, the white and the dyed green emsket are also Shetland, the rest are either CVM or rambouillet. I crocheted 2 afghans in early 2014 and decided to use up the leftover handspun. It's fun messing around. It will be just the right size to snuggle under in the winter. I say that as it's upper 80s here heading to low 90s for the weekend.

 

daylilies

I was reminded by some pictures Manise posted that I haven't posted photos of some of my daylilies.

I told her that I couldn't find a deep purple I moved from a border to another area (neighbor thinks Round-up is necessary for everything - and not just on his property!)

I found it:

I bought a cheap daylily last year to keep it from being thrown out - well worth the $1:

Some of my  drought resistant hybrids (Susan - these are the parents of the seeds I sent to you). I have some proliferations I rooted last fall - now they have fans and will be ready for a new home in the fall. If anyone is interested, let me know. The bottom is a derivative of "Along the Way" - one of my favorites. With a volunteer red snapdragon - come on hummers!!!

turquoise

Here's the last paragraph in Ellen Meloy's The Anthropology of Turquoise:

"No, I would keep my turquoise, not trade it for anything. It is the stone that strengthens the eyes, said the Persians, the desert dweller's equivalent of a bulletproof vest against pain or demonic influences. It is water, say the Zuni. For the Aztecs this is the color that supplies the heart. For me it is simply instinct, and prehaps this is all that a person can try to put into each of her days: attention to the radiance, a rise to the full chase of beauty."

Thinking of descriptions earlier in the book about the healing power of turquoise, I wore turquoise pendant given to me by silversmith JHP decades ago, solar dyed, hand knitted socks, blouse, over shirt, jeans and what the hell underwear yesterday. I don't know if any of this will do any good - does M as well need to be covered in turquoise? How about the colors in the house, the cars, the gardens, and what about the dog collars?

Is there a saturation to turquoise?

I think not - this is what I knitted while in the (MRI) waiting room - a triangle shawl - lace panels alternating with garter stitch... blue silk shining thru the Shetland yarn.

Finished shawl July 30, 2015 (awaiting the blue moon tomorrow night)

And here's M's lap the other day:

This is the radiance of our days.

July 13, 2015

I've been posting updates on FB as well as here - thanks to everyone for sending us good karma!!

I haven't posted here about some other stuff going on - like the blue merle sheltie Riley having some issues. We almost put him down last March due to renal failure but he pulled out of it. The vet warned it's just a matter of time. Riley has cancer and there is a possibilty that it's affecting his liver. Right now we can't justify ultrasound etc for him - with the knowledge that the ultrasound would provide may mean a sooner decision about ending his life. Maybe that's cowardly to not want to know... but being where we are now... maybe not.

We have been going thru our stuff - selling tools, jewelry, copper (you would not believe how much copper I had in stash for frames and future arch curtains) and so forth. I went thru my extensive library and loaded up 14 paper (doubled) grocery bags to take to M's 2nd cousin's local bookstore. We will have plenty of credit and therefore much opportunity to fill the empty shelves. Of course, that was only maybe 1/4 of what the shelves held. Made more room for our rock collection!

I also sold my Kromski Symphony and used part of the money to buy a new bike. That's been a joy as the mag levels (depleted for too long) are finally in the low range. I'm still on supplements but I have gained 15 lbs which is a big deal when you figure I was under 100. I should be around 130 so there's a ways to go. I am working on building muscle. Muscle!! Not bones - joy!!!

So of course, we took 2 loads of stuff to Habitat for Humanity (so nice to outgrow clothes rather than search for the petit size with long legs.... I have 36 inseam so you see what a chore that was).

Today was my dentist day - my hygenist  is also a spinner and gardener so spending time getting teeth cleaned several times a year is actually enjoyable. He was shocked to hear about M's diagnosis and came out to the waiting room to visit with him. It's these little things that mean so much right now.

We really miss our former neighbor Irene who died a couple months ago. It would have devastated her to know about M, though, because her SIL's bro (and M's co-worker) died on melanoma 8 yrs ago. 

And that's what's going on in my world. And it's raining and the garden is lovely. The spinning is wonderful - Shetland roving from RiverBend and knitting Shetland fingering weight into a shawl. No pattern just fooling around with lace patterns alternating with garter stitch.