Perspective

The holding pattern seems to be holding, at least as far as we can tell without blood tests.  Gil will be having thorough testing on Dec 23rd as part of the end of the clinical trail, including a full body scan for "honeycombing" bones, bone marrow sample and all the usual suspects of blood and urine tests.  It will be good to get a detailed snapshot of where the disease is now that he's been off the Velcade for a couple of months+. 

 

The current med regimen seems to be managing the peripheral neuropathy pretty well, though the few times we attempted to pull back on them a little, the pain came on strongly.  Sleep has been a little ragged recently but, in general, it's been good.

Unfortunately, (or perhaps fortuitously!) Gil's on his own for a couple of weeks, as I flew to NYC to help with my son Adam's care for a sudden onset and severe case of Guillan-Barre syndrome.  This has given Gil a chance to both be the mice that play (while the cat's away) as well as becoming his own "cat" a little more.  I'm grateful that this is a stable time for him so I don't need to worry.  We're blessed with generous friends and neighbors, so I'm not sure he's even had to cook yet!

Unfortunately, we'll only have two of our three boys home for Christmas, but I am REALLY looking forward to it.  Somehow it doesn't feel like pre Christmas without all the goodie prep I'm usually bustling with at this time of year.  When I get back next week, I'm going to really have to kick the grapefruit eating into gear to get enough peels for our candied grapefruit peel tradition.  Adam's success in rehab (hopefully he'll start in a week or so) having my family home and "Obama hope" will be my big Christmas presents. 

 

This has really has been a life altering year for us all, in so many ways.

And the beat goes on...

Gil's myeloma numbers are holding steady and the pain may be diminishing (or at least is more manageable) so we're going to stay in this holding pattern as long as we can.

The doctor seemed to be saying that, once this coasting isn't working anymore, we would do a little more med adjusting but that the stem cell transplant might be the next intervention in line.  To that end, she encouraged Gil to start exercising and generally trying to get in better shape.  (of course, as we all know, easier said than done!) Any support you can offer is welcome.

 

Unfortunately, the CT scan Gil had last week showed that he did indeed have at least one kidney stone. Though it's fairly big, it appears to be able to move so the plan is ALOT more water and hope that it makes it out without needing intervention.  

I remember the pain Gil went through two years ago when he had his major kidney stone attack while we were out east dealing with my mom's death. Let's hope this one slips out as easily as some of the other small ones did.

Our spirits are good.  We're basically ready for winter with the firewood on the porch and the hoses coiled and ready for the barn.  Today the turkeys are starting their transit to the feeding of many family gatherings.  And we have been given the gift of getting all our boys and their loves here for an extended Christmas with us!  Life is good!

I'm ending with a picture we took a few weeks ago of the sunrise on the western hills (one of my favorite ways to experience sunrises!)  We are both savoring more of the day to day gifts we have, an "attitude of gratitude"; it helps.  If you'd like a larger printed copy, let us know.  We'll be printing copies for friends.

Gil's other big birthday present

I'm hoping to be able to post PICTURES (with luck, no more boring text only posts!) of Gil's two big presents; the TV you heard about but the other one was on the day after his party, our daughter in law, Kate, ran a MARATHON to raise money for myeloma research.  This is not simply an academic gift.  Gil's life expectancy is intimately tied to the research into new treatments.  This was, indeed, a gift of life (and a pretty impressive feat in it's own right!!!)  Thank you Kate!

It looks like I got the pictures on, so I'll give you one of Gil's face when he first saw the TV

(Obviously, there's a learning curve on size and placement of pictures on this blog, but I'm pleased to be starting.)

On the health front, the new pain and nerve rehab drugs appear to be making a difference.  We're hopeful that the neuropathy is going to reverse itself.  

So the beat goes on.

Holding Pattern

Three weeks ago Gil went back on the dexamethazone without the Velcade.  His myeloma numbers had been increasing during the previous two weeks when he had been off everything. Now, with the dex, his numbers are steady and even decreasing a little.

So,   we're in a holding pattern.  He'll stay with the dex, continue meds to help with the peripheral neuropathy, and hope it fades away.  He's getting the hang of using the meds for break through pain earlier so he's not trying to battle a raging fire.  (actually not a bad metaphor as the pain often feels like burning)  It's hard to say if it's getting any better yet.

BUT he has a new toy or rather toys which are a major distraction!!  On his 70th birthday last week he received a large flat screen LCD TV with HD and a Blue Ray player.  Our friend, Terry Millar guided me (actually he did everything) to use the family/friend $ contributions to get Gil the best home entertainment system possible.  

It was a complete surprise; we had it set up by Circuit City while we had Gil out for a birthday dinner.  The look on his face was priceless as he said "Holy shit!" about 25 times in the first 10 minutes!  He and his brother Bob stayed up half the night setting up the surround sound and watching a bank heist movie.  

His card said "some boys don't get older, their toys just get more expensive!"  

I'm glad his toys give him so much joy!

It's a "package deal"

It's been a rough couple of weeks.  The peripheral neuropathy has varied, with no discernible pattern so far, from uncomfortable to downright miserable.  He's tried everything but the kitchen sink and once we think something can be relied upon to bring relief, the next time it doesn't.

On Tuesday, when we saw his doctor, she gave him some different pain and nerve restoring meds and said that it might be a couple of months or more before we'll know if this neuropathy will fade or not.  She convinced us to restart the weekly dexamethazone  and to wait a bit longer before deciding whether or not to eventually continue with the Velcade trial.

That was before the final numbers came in.  Gil's M spike rose to .88 (from .72) during this last 3 weeks.  We're waiting for a call back from his doc, but the implication was that we may need to decide sooner rather than wait much longer re. continuing with some chemo, the Velcade or something different. 

We have both been incredibly lucky this lifetime.  With all of Gil's medical issues, he's regularly pulled off miracles (his right arm as a case in point!)  But the superstitious part of me wonders when the payback happens.   I need to remember the bumper sticker we made back after his brain tumor.

"Shit Happens, Miracles Happen, (it's a package deal)"

It's part of how cancer magic works.  Having a terminal illness, where you expect "shitty" things to happen, opens your eyes to all the unexpected miracles that are going on.  

Somehow, I think I'd started to expect that Gil would always have great luck, good responses, great numbers. 

 Wake up time! so I'm tuning in to miracles right now. 

Holding Pattern

The ache in Gil's legs is somewhat better, though it varies from day to day.  It makes me wonder if he will bounce back or if he'll be stuck with this.  

It's delicious to be off the chemo and dex but there's the haunt "what will the next chemo be like? will it work any better?" unsettling my thoughts at odd times.  

We're in a holding pattern; should know more after Oct 7th.

Setback

What Gil is experiencing is:

heavy legs, deep bone throbbing ache in his calves and somewhat up into his thighs which varies in intensity but which has been pretty extreme this last 24 hours, but the scariest is difficulty getting his leg muscles to respond so his feet drag somewhat when he walks.

What the doctor says:

This is most likely a type of peripheral neuropathy side effect from the Velcade.  He's going to stop taking it for two weeks and see if he bounces back or not.  Unfortunately there is a chance that this effect may be permanent.  After the two weeks we'll see about going on a reduced dose or ??? 

What we're doing for it:

Our neighbor's hot tub definitely seemed to help with a hot bath or shower a more convenient not quite as good option.  He's taking more pain meds and a rather novel idea brought up in the support group... putting Vick's Vaporub on the afflicted areas, cover with a stocking or something and sleep through the night with it on.   Odd, but there are hopeful reports and we'll be trying it tonight.

So that's what's up with us for the moment.  We've been so lucky so far, I feel a little taken aback with this rather abrupt turn of events.  I guess we are fortunate that there still are other med alternatives and that his numbers at this time are not in Myeloma  crisis territory.  And since he's off the dex for the moment too, this should be a goood sleep stretch! ("there's no great harm without some small good")

Kathleen

Chemo Side effects

We were kind of knocked for a loop, this weekend,  by what appear to be chemo side effects.  Gil's legs became so leaden and achy that he was having trouble walking.  A neighbor's hot tub helped somewhat but it continues as a real issue with two more treatments this week!  

We read that this could be a side effect of the Velcade and remembered that 2 weeks ago he had this symptom which we thought was tied  to his getting sick again.  The following week was his "off week" for the Velcade so the symptoms backed off.  Now they're back in force.

Curiouser and curiouser.  K

Three Months Inh

We're three months into the Velcade clinical trial, hopefully halfway. Somehow I was expecting a little bit of a hooray! moment, but didn't really get it.  

There are several lab numbers we're following but the best indicator of myeloma activity is the protein M spike.  When he was first diagnosed, it was 3.5. It started coming down well with the thalidomide; it was 1.9 when we stopped at the end of May and 1.4 when we started the Velcade on June 23rd.  It's come down more slowly, but steadily, until this lab. 

Three weeks ago it was .7 and this week .72.  It may mean nothing; it could be a little statistical variance, but  my fear is that this drug is starting to be less effective, though it really is too early to conclude that.  

His kidney function is holding steady, and we're back on the low uric acid diet to hopefully help clear out kidney stone growth and maybe that will help those kidney function numbers improve.

He's mostly over the "ear sinus" infection, but may be starting to get more  "sicky" side effect from the tues/friday chemo.  It seems like it's happened these last few times.  Hard to say what causes what, though.

So,      not the most uplifting post.   But he's fine, off playing golf at some snazzy course with friends.  His sleep is MUCH better! The last three "dex" nights he's gotten between 5 and 6 hours sleep so maybe he's become a little more tolerant of the dexamethazone. 

He's been working up a storm with his tractor, shaping our driveway, preparing for winter. I've been freezing and canning and tending the turkeys (sold out for Thanksgiving but still taking orders for Christmas!). So life is good. 

Kathleen

and . . . he's getting better!

He seems to be responding to these new meds!!

and I am very relieved.

Gil is sick

The good news is: it's not pneumonia!

The bad news is: it's an infection of the sinus behind the ears (who knew that there even WAS a sinus behind the ears?!) It's draining into his lungs which have become inflamed and that is why it mimicked pneumonia so much.

He's on a new antibiotic [his poor intestinal flora and fauna are really being hit!] and a breathing thing I've always called a "puff puff" since my mom used them , which should relax the bronchi enough that he can cough up the gunk his infected sinus is expelling.

This may be more information than you really wanted but it is, indeed, the current "Gil update" and I am (for the most part) grateful.

Now for a full night's sleep  (hopefully)

Balancing Act

Gil's immune system is "compromised" because of the myeloma.  I thought it was getting better as we moved through the treatment; now I'm not so sure.

A couple of weeks ago we went to have dinner and spend the evening with the young Uruguayan family whom we have sort of adopted.  They have 4 school age sons whom we've been tutoring for several years and a delectable one year old.  We hadn't been tutoring this summer and missed them.  When we went to the house, the baby had a runny nose and a fever.  I looked at Gil and said "we should really go, shouldn't we?"  but he didn't want to and I didn't want to, so we stayed.

A few days later he got hit with the cold, straight to the chest.  We were having the doctor check in at the beginning of each 3 week treatment cycle and the doctor started him on the kind of antibiotics which address the most common type of pneumonia that myeloma patients get, streptococcus. 

Gil finished the antibiotics on Friday, and now, may be getting worse.   And I'm a little scared. Last December's pneumonia was probably the scariest crisis we've had so far.

I realize now  that being in the house he'd been sliming through, and eating food with a little cesspool (no matter HOW cute!) is a no go.  

But how to balance caution and life? and relationships? and adventure?

Gil's brother told Gil that he shouldn't sub in the schools anymore, but the doctor had said it was fine as long as he washed his hands often and didn't hold a kid with a runny nose.  

Ok,  but what about flying to Mexico?  Gil really wants to see our the family we've stayed with in Cuernavacca again.  The thought of keeping him safe and dealing with it if he got sick there gives me the willies.

We need to figure out how to balance being safe and risking to live the life he wants to live.  

Actually, so do I. but at a different octave.  His balancing act is just more precarious.

Myeloma support group

I am deeply grateful for our myeloma support group.  Approximately 30 people (both with myeloma and "caregivers") meet once a month, organized by one of the couples in the group.  There's usually a speaker, a snack and then some check in time.  The speakers have been truly useful: a kidney specialist who clarified which numbers to look at, a pharmacist who explained the logic of the choice between  aggressive treatment and slow, incremental treatment, and especially the speaker from the International Myeloma Foundation whose numbers gave me such hope (last post).  If you want to become a true Myeloma geek, their web site is the best place to get educated. 

Part of what I value about the group is the ease in speaking about your disease status.  Most folks have had myeloma for several years, and all but one other has gone through at least one stem cell transplant.  Some people are in remission (no need of meds at the moment), a few are on the slippery slope of the disease in an aggressive moment with only limited tools left to use, most are in some kind of chemo program which is helping or keeping them stable (Gil's status).

I appreciate the reality check that the range of disease statuses are, too.  It makes my gratitude more grounded.  With everyone immersed in their own particular part of the struggle, it's easy to ask and to tell.

Outside of the group, I've noticed in myself both the discomfort of asking someone with cancer how they're doing as well as the discomfort of being asked and wondering what level or type of information they really want.   

Over the years at times I've been  hesitant to ask about some one's disease, wanting perhaps, through silence or comment, to convey the impression that I've gotten an optimistic impression of their status. (like my friend with a type of lymphoma which is, indeed, fairly easy to put into complete remission; yet in the past I've used that knowledge to let myself not always ask her what her disease status is)    I'm not sure all of what's behind my not wanting to ask, but I suspect some of it is a little bit of superstition that if I assume everything is ok, it will be.  Another piece may be feeling guilty that I have a kind of health that they don't (as though my asking might remind them of the injustice). Probably the last is the difficulty of wanting to express the "right" degree of concern without being maudlin, so silence is easier.

The flip side discomfort happens only occasionally when someone I don't know really well asks about Gil's disease status. I pause if my intuition is unclear whether they are just asking like a salutation "how are you" where "fine" is the socially appropriate answer, or for treatment number updates,  his sleep or moods, my sleep or mood or all of the above, non of the above. 

I've learned to respond with whatever degree of depth or intimacy my whim or our relationship elicits at that moment. If they want more, I figure they'll ask.

So, Kathleen's guide on how to ask someone with cancer what's up:

Do ask if you're thinking about it, but not if it's not relevant to you at the moment.

Ask what you're actually are interested in finding out (eg. mood vs treatment status)

Don't worry about expressing appropriate concern.  They're living with their cancer, and unless they're in the final stages, they're probably grateful to be alive and not in need of verbal hand wringing.  Caring curiosity will not offend.

In sum: ask for what you want to know and/or say how you feel and then move on to sharing the life you both have at this moment.

It's easy to do that in the support group.

Kathleen

Cancer magic

Cancer can really alter your mindset.  If you're lucky, before it kills you it can change the way you and those close to you experience being alive.  It's a bizare thing to both dread and cherish  something as double edged as a terminal illness.  It's not my body; it's not my life, so it seems unfair that it gives me the gift (only occasionally)  of those crystal moments of feeling the breathtaking beauty of being alive.  

Usually I'm mired in all the things I should have gotten done that I haven't.  Two days a week tied up in treatment and the residue of dealing with Gil's sleeplessness doesn't always leave me philosophical     but     

when I get my head out of the muck

I see the guy I married as the precious generous spirit I married , and the egg laying chickens who (twice!) walked through the electric fence in the pasture I was trying to move them in to as my teachers about the power of home and the familiar and that, with patience, I will be able to bring them to grass (next year, next year, [the gardener's chorus])

Cancer shakes me out of my sense of entitlement.  What I got  is   WHAT I'VE GOT! 

and I'm grateful.

August update

Not quite two months in to the clinical trial, and Gil's "numbers" are looking good.  It seems that he'll be a responder to this drug.  His creatin and other measures of kidney function seem to be getting better and his red and white blood count also are improving.

We had a scare last week (not totally resolved yet) of what appeared to be a return of the dreaded kidney stones!  [Gil had some major impassible kidney stones a year and a half ago, the ongoing kidney poor function could have ben a clue of the Myeloma] He'd found out that they were uric acid based and last summer/fall with restricted meat and alot more liquids, milk products and veggis had brought it down to normal.  Since the Myeloma diagnosis we kinda fell off the wagon and have been eating far too much meat protein.  Back on the wagon this week has been hard on the meat loving guy.  Good thing I like a culinary challenge: to make tasty don't notice there's no meat dishes.  I'm open to new recipes, if I can figure out how to read blog responses!

What we need to keep on top of is Kidney function.  Apparently the Myeloma produces "gunk" in the blood (platelets? calcium excreted in to the blood?) which functions like glue clogging up the kidneys and producing scar tissues which obviously reduces kidney function.      The stones (unrelated) don't help.  Drinking enough water and cleaning up the uric acid are things we can do .  Good for me too!

The other big concern right now is the major side effect of all the Myeloma drugs, peripheral neuropathy (nerves in the hands and feet dying).  I sort of understood the mechanism but can't recall enough to explain.  Unfortunately, along with being a responder to this drug, he also seems to be somewhat more sensitive to the neuropathy.  We're trying some nutritional supplement and heat alternative med ideas.  If it becomes serious, it could stop him early in this trial.  But as the Doc said, there are other meds to try which might have less of this side effect.

Our goal, hope is by Christmas to get Gil's numbers to a stable spot that can hold even if he pulls back on the drugs ("a pretty good" remission) or the gold standard, a complete remission where his numbers are basically back to normal and hold stable off the drugs.  With Myeloma these won't hold forever, but we know folks who have had years!

Last concern with the clinical trial meds (Velcade and dexamethazone) is the side effect of the dex.  One or two nights a week he gets little or no sleep.  Unfortunately he's used to sleep deprivation and may not always realize how much it's influenced his ability to function (judgment, use of power tools) We've had some luck with a massage "bed" which I'll write about in another blog.   

I think I should probably do more frequent little updates, if my comfort level with this rises as I'm sure it will.

Clinical Trial

Gil began a clinical trial of Velcade and dexamethazone on June 23rd.  He'll be doing 8 three week cycles involving 2 weeks of twice weekly IV Velcade and then the third week off.  Unfortunately, the "low dose" dexamethasone is taken once every week and with Gil's insomnia issues has led to one night each week of NO sleep which he slowly recovers from before the next week's no sleep.  The dexamethazone contributes to the effectiveness of the Velcade so we are loath to ratchet it down to a lower dose.  We're trying to be creative about ways to safeguard from exhaustion and build in rest.

The Velcade is one of several newish drugs which might give him a partial remission or at least good control of the disease for a while.

 Myeloma is an odd cancer. Rather than becoming tolerant of the different chemos, it finds a different way to work it's platelet orgy and  so works around the road block that particular drug has thrown up. 

We saw some stats about the newer drugs and what's being researched and developed that give us hope that if he can hang in there for the next five years or so that there may be drugs available which could "manage" the Myeloma and make it more of a chronic rather than terminal disease.

My understanding about Multiple Myeloma is very basic.  If you want to understand more the International Myeloma Foundation has a great web site and tons of info.

I hope to get the hang of this blog thing and make this a little more interesting, but that's all for now.   kathleen