Thursday, December 31, 2009

San Francisco

Enjoying a visit to the bay and daughter and son-in-law. My oldest son came along for the drive up Highway 5.

A chance to do nothing, which is exactly what I need. Pretty sweet. Fireworks on the bay tonight is the only event on our calendar.

Kicking back with music, sewing, art, writing, reading in the ultra cool industrial loft in Emeryville.

Monday, December 28, 2009

Seasonal Myths


I hope your holiday celebration was joyous. We all could you use a little joy in this crazy world, especially my friends and their families struggling with heavy health issues.

While the powerful myths surrounding CLL seem most often like the sword of Damocles or the rock of Sisyphus, this season reminds of us that it instead can be the myth of the impossible: the virgin birth, the oil lasting 8 days.

Let me spread (strange verb) a little personal joy.

My platelets were a resounding 249,000 today, 2 weeks exactly since my last IVIG.

I am going to try to stretch my good fortune out to 16 days before my next visit to the infusion center.

My time off last week to do some serious writing was a qualified success in that I am clear that is important and difficult work I must do. I can share so much more on the bigger canvas of a full book. The tough part is that it is tough. It is slow and methodical. I enjoy no divine connection with the universal truths with words just flowing through me as guitar riffs did through Jimi Hendrix. " 'Scuse me while I kiss the sun". 'Scuse me while I type on the MAC just doesn't have much of a transcendent ring.

Like Tom Robbins says, I need to show up whether the muses do or don't. And work.

Off tomorrow to visit my daughter and son-in-law tomorrow in Berkeley at their new place.

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Tuesday, December 22, 2009

No push back

Dr. Forman and I reach the same game plan, clearly by different routes and from different starting points, but we have a very similar strategy.

And that is very good, and hardly to be taken for granted. In fact in CLL, it is more often the case the doctors and the informed patients are not in agreement about the treatment options. And is almost a certainty that if you have two CLL doctors, they will not agree with each other.

So here is the rough plan.

First, I must continue the IVIG (intravenous immune globulin) every two weeks which is doing a great job handling my ITP (immune thrombocytopenic purpura), except for the one fright a month ago when for some unknown reason my platelets dipped below 30,000. Dr. Forman points out the obvious, that my ITP is driven by my CLL induced immune dysfunction, which is clearly not related to my tumor load. It is "dose independent", which means, at least theoretically, that while my CLL may progress, my ITP shouldn't become more recalcitrant. The implication is that the IVIG may still have a long and successful run ahead of it.

In early February, I am booked for a BMB (bone marrow biopsy) and abdominal CT scan. Last look see was in August, so it will have been 6 months. Pretty standard fare to stage the disease like that, not that anything in this disease is ever standard and certainly one size fits no-one.

Both Dr. Forman and I are spooked by my ITP. It is the driver of my need for treatment. My CLL is not that threatening. In fact, it is pretty wimpy these days. However my low platelets give me the heebie jeebies. Scare my doctors too. It take away a big chunk of my fun and my freedom. Worse than that, every time I have a blood count it threaten to take my life hostage. Single digit platelets change everything, and not in a good way.

So the CT and BMB are more to set the baseline for the treatment, not as in many others to determine the need for therapy.

That said, and I hope you are listening, Mystery of the Universe, if my bone marrow, G-d willing, turns up as clean as Mormon's liquor cabinet, and my nodes have shrunk to the size of a politician's conscience, I would have to say my clean living vegan raw diet, the Budwig or Zeolite magic, or everyones' most welcomed prayers or the psychic thrusts have finally kicked in, and I will glide a little longer or maybe forever.

If not, and my CLL is still rearing its ugly head, it will be show time, a call for action.

The nature and the exact timing of that next treatment step is not clear. What is clear to both Dr. Forman and myself is that the complete remission I should achieve with immuno-chemotherapy will most certainly be followed with a second more humbling transplant (a midi, not a mini - OUCH).

Like before my first transplant, despite my expectations to the contrary, I got no push back with my aggressive plan of action. Treatment and transplant, like love and marriage are locked together. Going for the cure. No wayward stations on my road to a complete healing.

This coming together of minds, Forman and me, is such a relief, a piece of solid ground is a shifting landscape.

I will seriously address in future posts my various chemo and immunotherapy options to get to that blessed remission, and my critical conditioning regime to avoid the rejection snafu of the last transplant adventure, but I am taking a few days off to care for a dear dear friend who is having a minor surgery for a broken finger.

And even before that I promised myself I would dedicate Dec 24-26 to writing my book.

Believe me, the book is for you, my friends and readers to help you get through the muddle that cancer or any life crisis can make of your reason, your gut, you life.

It will help me too to sort through this all, but the blog is light work, and Facebook is a non-contact event. Forget Twitter.

In fact, Facebook is as easy as slipping on the ice, and often about as graceful. Dashing off a blog post is a gentle slide on your bottom down a bunny snow slope. Fun and worthwhile, but rarely character building. Writing a book is a blindfolded run at a ski jump of Olympic proportions. It is courageous and lonely work. Writing is not a social activity, and I am a social creature.

These three days are critical for me to push my agenda forward. I have so many broad and wild imaginings that I know could help others with their lives in jeopardy, but I need to make my ideas real and accessible and fun.

That means no telephone calls, no emails, no tweets or Facebook updates, and no posts here.

Unless of course there is an emergency or an epiphany (it is the season). I am especially open to the epiphanies.

So Merry Christmas to all my friends who celebrate the special birth of the divine on earth.

And to my other friends, enjoying the return of the sun, and the time off.

See you in a few days

G-d bless.

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Waiting Again

Today is visit the doctors day.

A doctor's appointment for someone close in the morning (all will be well very soon, so no worries), and then my own visit at City of Hope with Dr. Forman.

The visit will lead to a plan, my cure CLL project over the next year.


Monday, December 14, 2009

More Good News

My last dose of precious immunoglobulins pooled from a host of unknown donors was almost two weeks ago.

Today before the next batch of IVIG began to coat and protect my fragile blood stoppers, my platelet count was a robust and completely normal 266,000. That is the highest they have been since August. The rest of my CBC was wonderfully boring too.

Was the time over a month ago when it didn't work a fluke?

Is there such a thing as a fluke? Or luck?

I don't think I want to start down that line of thinking. Instead I will simple savor my good fortune and the present gentleness of my path.

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Sunday, December 13, 2009

Security is mostly a superstition

The good question has been asked: Am I rushing into a second transplant because of my desperate hunger to be done with this internal villain? Am I deciding more with my heart and than with my head?

I don't know how much of a role my impatience plays, but I know my temperament does influence how I see the world. How could it not?

I try to factor that in. I try to bounce my thinking off others including my doctors, my friends and family, my readers likes you, and my CLL support group.

I try to play out in my calculating mind and on the keyboard the various plans and their risks.

Yet in the end, I think Helen Keller nailed my world view when she said:

"Security is mostly a superstition.
It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. The fearful are caught as often as the bold.'

This is an overly broad and sweeping damnation of timidity. I would advise any friend or any patient to take all necessary precautions, buckle up their seat belts, and avoid the high risk zones of life if they can.

The last dependent phase hangs out there, and in doing so hangs the rest of the critique out to dry - if they can.

Can I avoid a transplant? Absolutely. But for how long and at what cost?

Is playing it safe, not safe in the long run? Must I take the big risk for the big reward?

Both my head and heart answer with a screaming YES to both questions.

I wish there was a pill or a shot or an infusion that could make this nightmare disappear, but there is isn't. Not yet, anyway. No way am I happy about the prospect of a redo transplant with harsher chemo and the the likely ravages of GVHD.

I am no longer the adrenalin junkie that I used to be. I admit I still crave novelty, but stomatitis is hardly the experience that is missing from my bucket list.

I think and feel that this most frightening and difficult route is also the most logical and safest, if that makes any sense.

But I will keep researching and reassessing. Let's see what Dr Forman says in a little over a week.

CBC and IVIG infusion tomorrow.


Saturday, December 12, 2009

Battle Plans and Diversions


My failure to post has not been due to lack of news, but rather lack of focus.

On the CLL front, after some advanced noodling, my battle plans are being drawn up for what I am certain will be the final successful struggle with this deadly foe.

Sun Tzu will be my general.

He orders:

Attack him where he is unprepared, appear where you are not expected.


In war, then, let your great object be victory, not lengthy campaigns.

And finally,

Though we have heard of stupid haste in war, cleverness has never been seen associated with long delays.

What does this means?

It means on to chemo, likely in the next 60 days, likely FCR or PCR, then on to a second transplant.

Honestly, I sense all these forces moving at a distant, they are not in focus yet.

Why not?

I have been having too much fun is why.

Let me share as best I can an emotionally towering experience. Hearing and seeing John Adams at the Disney Hall, sitting behind the orchestra, right above the tympani for THE DHARMA AT BIG SUR.

Magical to watch the conductor/composer moving the giant engine of the orchestra together as a transcendent unit, to a place unique in time. From our unusual vantage point we saw when JA had called for one of the percussionists to slap his stool with a wooden stick or draw a violin bow across his xylophone. There is music is everything. The sounds and sights are lingering still.

Then another trip back to the 60s, this time aboard the PIRATE RADIO battleship moored off the coast of an uptight England, in a wonderful period piece with revolutionary music, reminiscent characters, and rad clothes. This must see movie captures much of the joy and some of the sickness of a time that seems so far out, it is hard to believe it really happened. Did it happen?

Did I mention our second trip to be thrilled and tutored at the same time by the neo-Baroque art of Botero and the Latin American exhibit at the Bowers? Botero sees it all and tells it like it is.

And the cultural pinnacle: Two King's game, where my battered team wins both in shootouts. And one of them was a gift to two sweet suite seats. (Say that fast three times) And at the other, every fan in attendance received a bobble-head Luc Robitaille doll. Life doesn't get much better. Go, Kings, go.

Add to that a raw holiday food prep class, numerous walks on the beach, Balboa Island, and the back bay, home visits with dear friends recovering from various hospital adventures, shopping for Hanukkah, and finishing SKINNY LEGS AND ALL, a slap in the face book of what I though I knew about the root of Judaism by my favorite author, Tom Robbins.

You can see why my focus on CLLL has been blurred.

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Saturday, December 5, 2009

Staying in touch

Just a quick reminder on the mechanics of my blog. With a special nudge to Steve Karan.

If you want to stay in touch me or if you offer to help me by sharing your experience, I have no way to contact you unless you include your email in your comment. This can be very frustrating.

Better yet if you wish to protect your privacy, simply email me at

I will NEVER share that information with anyone. I have no reason to, and I expect the same from you.

If you forget my email address is also included in my profile, and in the introductory paragraph of my blog.

So, to Steve Karan, and others, I do want to learn more and share experiences, please drop me a note.


As I have said before, and will say again and again, we are all in this together.


Friday, December 4, 2009

Tough Stuff Part 4, the last part for now

Maybe I am trying to read the tea leaves and what I am looking into is a mug with leftover coffee grains.

Not sure this makes all any sense. Last glance backward to put it all together for the future plan.

I developed ITP the first time when I had a significant tumor load. When the combination of cyclosporine A (CsA), an killer immunosuppressive drug, mostly used to prevent transplant rejection, and occasionally to calm down an over zealous immune system, and rituximab, a monoclonal antibody, Vitamin R, used for everything from CLL to rheumatoid arthritis and ITP, worked their magic and sent my platelets skyward, my celebration had just begun. The combo offered a surprise bonus no-one expected when it had a profound anti-leukemic effect, shrinking all my palpable nodes, and reducing the CLL in my marrow from 90% to 3%. Went on to transplant and the rest is history.

I am focusing on the ITP here. These two drugs work well on ITP for people who don't have leukemia, so it is completely logical, but far from certain, that the reduction of my tumor load was not the issue in controlling my ITP.

Here's where it gets tricky. True, my ITP was gone when my tumor burden was only 3%, but it was also gone when it had climbed to 25% after 4 months off the R, though still on CsA.

I was on CsA and IVig until just before the transplant.

With the heavy conditioning chemo (FCR) for the transplant, my tumor burden dropped even more, to MRD negative in the marrow with shrunken gut nodes. Eventually, the CLL creeped back, slowly and last August, when my platelets started to fall again, a bone marrow biopsy showed it had snuck back like a terrorist cells in the Swat valley, claiming 2.8% of the niches of my marrow. The nodes were growing slowly too.

So here's the way I see the relationship between my CLL and my ITP. A weakness of this analysis is that it only assesses the bone marrow and not the nodes, and the nodes have always taken the lead in my CLL dance.

1 year of CLL growth = no ITP

High tumor load (90%) = 1st episode of ITP

Reduced load (3%) = ITP controlled w CsA+R

Increased load (25%) = ITP still controlled w CsA and IVIG

Greatly reduced load (MRD-) = ITP still controlled post transplant & heavy FCR

Slight increase (2.8%) =ITP back gentler & controlled sorta with IVIG

The relationship is hardly lock stepped. Immune dysfunction does increase with the time with the disease, so the ITP may recur with less and less CLL induced immune chaos.

Dr Hamblin says if steroids fail, I should move to control the underlying disease that drives it. My concern is that I need to get a MRD neg,. remission, (and possibly shrink all the nodes, including the more provocative ones in the gut) to control the ITP. I worry that a simple PR ( partial remission) or even an old school CR (complete remission) will not accomplish the mission.

R+HDMP gives me an over 90% chance of a response , but the odds of a CR are much lower. and the odds of a CR, MRD negative without adding campath are even smaller.

Will that solve my ITP? A dear friend developed ITP after R+HDMP did a great job on her blood, nodes and marrow. She developed ITP, like me, with a very low tumor burden too.

The effects that are caused by all these drugs on the CD200+ and Tregs and who knows what else that play a vital role in self tolerance and thus prevention of ITP is beyond my understanding. I think it is fair to worry that not only might R+HDMP not get me over the finish line to MRD negative and thus control of the ITP, but could make matters worse.

Might it make my platelets situation critical and refractory again? Not likely.

Might it make things more difficult to move to the next more myelo-suppressive step? Quite possibly.

It still might be worth the risk to avoid the more toxic path of FRC and transplant, but I need to prepare for the Sabbath, and lay my burdens down for next 25 hours.


Wednesday, December 2, 2009

Tough Stuff Part 3

Thanks to all who emailed or commented on my increasingly neurotic noodling.

Please do share with me your thoughts and ideas. It helps. It can be hard to get outside my own head, and you readers catch details I fly past in my writing.

TomD makes a good point in his comment. As sung by another Tom, his argument was that: This doesn't have to be the big get even.

In other words, delay the chemo and with it, the transplant. Don't drink the poison.

Instead, dance a little with HDMP+R for as long as the sweet music of remission lasts. And by remission, I mean no ITP, which is a strange end point, but my ITP is the driver of this equivocating. HDMP+R has a fabulous 96% response rate and an average 30 months progression free survival. Appears to work with 11q del as well though the number are tiny.

If the ITP recurs in 2 1/2 years, just move onto the next decision point, likely a transplant.

Rai says go for the transplant directly and Forman is not keen on HDMP+R.

Kipps of course thinks it makes perfect sense.

I am so confused. I will sleep on it.


Tuesday, December 1, 2009

Tough Stuff Part 2

This is another post best reserved for those up to their eyebrows in the intricacies of CLL.

You might want to skip it if you are not on a similar journey (and you should have skipped all but the first few paragraphs of the last post), as I plow through my decisions. Or you might enjoy following my tortured logic.

My friend and fellow CLL voyageur, Wanda, counseled that the CLL will make the next call. It will jump out of the bushes when it's good and ready and I shouldn't be wasting precious ammo when it is still a distant and mostly hidden threat.

Maybe she's right, or maybe I need to slaughter the beast while it is still a relatively docile pup, though I would never call it cute or lovable (sorry, Nancy, I remain staunchly unconvinced of my need to love my wayward cancer cells). And I think while it is outwardly unobtrusive, it may be growing in my gut unnoticed. 11q del has that propensity and that history in this poor boy's belly. That is after all, where it made its comeback after the transplant.

Moreover, I would hardly call it tame what it has done by hijacking my immune system and wiping out my platelets. I would call it downright dangerous and underhanded.

And so the problem is summed up, like so many before, by a song. This one is by the Eagles, Hotel California: They stab it with their steely knives but they just can't kill the beast.

Enough with this anthropomorphic portraiture. I wandered into the Holy Temple of decision, looking for answers. I didn't want to bring back animal sacrifice.

Where I left this discussion in the last post was the argument in favor of holding off on the bazookas of FRC and its friends and staying with gentler giants like HDMP+R that play nicely or at least more predictably with others.

The plan would be to buy a reprieve with a pretty cheap down payment, and hope that one of my ships (a SYK inhibitor or CAL 101 or a SNIP or Revlimid or a vaccine or something, anything) comes home and if not capable of curing the CLL, finds a way to keep it under control long term. The story line is meant to read like the Gleevec miracle in CML.

I so hope this happens, but honestly can I handicap the winner, assuming that there is even a winner in the pack?

No, this is a bet on an uncertain future, betting on what I hope for, not on what is. None of these new kids will be on the street anytime soon, so I would be guessing which trial to join.

But maybe I could simply buy the time say a few years with HDMP+R, and then do it again and then again. Or something different.

Maybe I could, but unless one of those above Yankee Clipper ships comes home, I will have almost certainly have played out my hand, let's be very optimistic, in the next dozen years, more realistically much much sooner.

Maybe then I could pull the transplant trigger. Maybe I still could, but I know the most critical predictors of success with transplant.

#1 The less disease at the time of transplant, the less chance of relapse.

#2 The sicker you are at time of transplant (heart, lung, kidney, infections), the higher the mortality.

#3 The better the match, the better the outcome.

The odds of those 3 being better in the distant future than they are in the near future goes against common sense.

So if I want to make it to 70 and beyond, and here I am screaming that I do, I gotta give up something and take my chances.

What that means to me is knocking down the CLL until it is nowhere to be found, then without missing a beat, jumping to a second transplant.

The devilish details could look like this.

Pentostatin and bendamustine don't mess with the T-regs and CD 200+ lymphocytes, at least in the test tube, and those are two important populations for self tolerance, something we all need, especially if we are homely platelets that seem to have target painted on their back.

So I am thinking PCR, which, despite a recent flawed study to the contrary, I believe to be kinder than FCR.

Real chemo, unlike the namdy-pamdy CsA (cyclosporine A) and R that I had last time, would also have the important advantage of softening me up before the transplant, knocking down my T cells so rejection of the graft is less likely. Not sure if P would work as well as F at that.

Then it's time for my new immune system again. More choices.

Dr. Miklos out of Stanford is doing some exciting things with conditioning including ATG and total lymphocyte irradiation (TLI), that I don't pretend to understand, but what it does is change the population of lymphocytes so that the incidence of GVHD is much lower, an incredible 0% incidence of NRM (non relapse mortality or the odds that you will die from the procedure that is trying to cure you), and a progression free survival rate at 2 years of 73%. WOW.

That is better than antibody's numbers I have seen, but it is still "experimental" and unpublished and the N is only 22. Tiny numbers.

City of Hope and Dr. Furman on the other hand know me, and will make sure, for sure, that I will engraft a second time around. And they are local, which is so important. Not crazy about a BuFlu conditioning as it mainly focuses on the marrow, and doesn't do much to the nodes, the source of all my problems. Not sure that matters, because the plan is that the prior chemo will knock down the nodes to a manageable size and what cancer is left in them will be easily wiped out by the GVL.

The details: FCR or PCR to tame the ITP and the CLL, the conditioning, TLI and ATG at Stanford or possibly BuFlu at CoH are not clear, but I am pretty set on taking the high risk path.

Lots of ducks to get in line. And the bone marrow biopsy.

My inclination again, identical to how I started this blog a year and a half ago, is to move my risk up front and by doing so reduce it. Is it my Yatzer Hara (evil inclination) speaking? I don't think so, but I do admit that I want to get this over with it. CLL is too big a chunk of my life. I am not a patient patient.

But it more than my impatience driving my risky behavior.

There is much that bodes well for moving quickly.

My wonderful donor is ready, willing and able.

I am well with no co-morbidities.

My medical insurance will probably cover it (hardly a sure thing in the future with the changes in health care and the need to save big bucks to cover all the exploding expenses- transplants are the pricey low hanging fruit, very tempting to limit to one per customer).

But the main point is that as of today, and as of the foreseeable future, nothing else offers a chance to see deep into my 70s and beyond.

I have way too much to do and a dozen more years is not nearly enough time. At the rate I am going, it will take me that long to write my book.

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Tough Stuff

I have dallied in the anterooms long enough. I have admired the columns and the graceful arches from the outside. More than that, I have peaked inside the temple's gold plated doors. The time had come, if not to enter the holy of holies, at least to walk into the inner sanctum where decisions are made that effect, well, everything.

The temple is standing on the rock, constructed again in its sunny detailed glory, at least in my mind's eye as a place of action, and if I choose right and G-d is merciful, a physical connection with a long and fruitful future.

I see two very distinct paths ahead of me.

The first is to avoid the toxic alley of purine analogs (Fludarabine or Pentastatin) and alkylating agents like cyclophosphamide and all their sequelae of infections and marrow suppression and secondary cancers and perhaps a rebound of a nastier clone of my own CLL nemesis.

The crazy thinking goes like this: CLL expert, Dr. Susan O'Brien said if you need treatment for CLL, you will die of CLL, so if you put off real treatment like FCR, you put off your own mortality.

I wish it were so. What she said is that if you need treatment, not if you get treatment.

Nevertheless, it make good sense to avoid toxicity, especially with my platelets being destroyed at such a fast clip in the periphery. I don't want to suppress the marrow, the source of all things platelet with chemo. If I suppress production with my treatment meds, and they don't do their intended task of decreasing tumor burden and thereby rapidly turning off the increased consumption, I am headed for a nasty bruising, and I am not being metaphorical here. Moreover F is associated with some very nasty ITP on its own, and is known to muck up the T-regs. My go-to-guru, Dr Rai is adamant. He would never use FCR on me because of the risk of life threatening ITP. BTW, one of the 300+ abstracts I reviewed from ASH, suggests P might be a safe choice, at least in the test tube. And the combo of either F or P with C + R is for sure safer.

But I have to do something. Today's good news of a platelet count of 228,000 suggests I still have some time to decide.

The most appealing option seems to be HDMP+R. Lots of advantages. Its master practitioner is my own Dr. Kipps who is the may be the world's most experienced doctor with this powerful non-myelo-suppressive, non-mutagenic option. Infections are the big risk and have caused too many deaths, but the protocol has been ratcheted down, so now they can usually be avoided, and at worst, treated. Again other heroes have paid with their lives so those following have a safer path.

HDMP+R doesn't usually clean out the marrow. To get that, you need a Campath chaser, and that is a high risk decision. Too many deaths from infection.

Since it is a steroid treatment, it should work great for the ITP, but that is yet to be proven.

Revlimid and Rituxan is another attractive option. Great with the nodes. Relatively non-toxic, especially for someone like me with a lower tumor burden though it may not be great in the marrow. And it can be hard on the platelets and the neutrophils. And it is very new. Works slowly and often gets better with time. I like that. This may be the drug of the future, but is it the drug of now? Maybe, I need to dig more.

SYK inhibitors may help both ITP and CLL. But I am talking real Phase 1 stuff here, and doubt I would qualify for a trial. This is a very exciting research for someone like me.

Same issues with Cal 101 or Tru-016. And their results with ITP are really unknown territory.

Bendamustine? Myelo-suppressive, probably safe in in ITP, but why use a alkylating agent.

Ofatuzamab? Promising, but rituximab has the track record in ITP, so it might be hard to get the doctors and insurance to agree.

High dose rituximab- One ASH abstract had doses escalated to a whopping 3 gm/M2 with good results. That is real tempting, but who is going to pay for that outside of a trial.

I need to review the papers and maybe contact the PIs (principal investigators) but of the choices above HDMP+R seems the most sensible and feasible and it is local to boot.

If I choice path one.


What if I do go high risk? What if I decide to race down that toxic speedway on my way to a cure, with the obligatory long pit stop and oil change at the transplant center.

Those who have traveled this far with me, know that is my true inclination, but is it my Evil (yatzer hara) or Good (yatzer tov) inclination?

More on that later. Chemo combo with a MAB (think FCR or PCR), then a redo transplant?

I am writing from the infusion center and I need to rest.