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