Morning update

Although it could easily drag into the afternoon before the interruptions stop and I can actually get this posted.

It looks like I'm not taking on too much more water weight gain, still around 17# total.  But at least it's leveled off.  I slept okay last night but did need to pee a lot which kept waking me up.  I should be off the IV fluids very soon, so without so much going on, maybe I'll start to get a net loss.

I am indeed still on target to leave today.  It's just contingent on the MRI, which is still allegedly scheduled at noon.  Although I'm mildly nervous about my oncologist's comment last night that I managed to piss off the MRI people (which he found somewhat amusing).  The story is that the MRI was originally supposed to happen on Thursday, my first full day here.  But it didn't, so it got rescheduled until Friday.  After the experience of the chemo all night Thurs eve / Fri morn (which I will try to get back to), I desperately wanted my sleep, so my request was for as few interruptions during the day as possible, and scheduling the MRI as late as possible.  Well by that time, the MRI had already been scheduled for noon.  I said no way.  I think they are used to being in the position of power and were shocked that anyone would have the nerve to tell them no, so they're pissed off at me.  Although as it turns out in retrospect I don't think it was just my stubbornness that ultimately would have mattered here.  The chemo went on for much longer than planned (also more on that later), and my memory (which admittedly was somewhat groggy and fuzzy at this point) is that the chemo didn't even end until around that point (after going on for something like 14 hours).  And I HIGHLY doubt that the oncologist would have authorized me to stop and then resume the chemo just so that I could get an MRI which was not particularly time sensitive.

The other possible question here is the report.  It's Saturday now, so staff is reduced and things move a bit slower, so it could take a little while for the radiologist to look at the results of the scan and generate a preliminary report.  I was initially led to believe that I couldn't be discharged until the report was generated (assuming the results looked okay).  And I even called Lorien and told her to postpone her arrival here today based on that.  But now I'm being told that the discharge orders are only contingent on the scan itself happening, and I can go home even if the report doesn't get generated today.  I'm not really sure who to believe.  For the time being I'm not going to tell Lorien to rearrange her schedule yet again, and just do my best to press for the report being generated today, just in case.

And as far as my wondering how much the short term drugs are indeed helping with how I'm feeling, I do think that is partly responsible.  My most recent morphine dose ended up getting delayed about an hour, and indeed things did start to get somewhat worse (but still not too bad) within that time range.  The good news is that somehow as a result of that I ended up getting my dose upped from 2 mg to 4 mg.  And is now what I'm at until I leave.  Which I'm somewhat happy about, b/c I was kind of curious to see what 4 was like.  No, I'm not a junkie, but I suppose I do have bit of a curiosity about narcotics.  As Lorien noted with my experience with Vicodan after some relatively minor outpatient surgery a few years back (where a couple hours after being discharged I was bouncing around at home and wondering if we had ingredients so that I could bake chocolate chip cookies), it's probably a good thing that narcotics generally lead to constipation (which I really don't like), or I might be more tempted to explore them more.  (Am I venturing a bit into TMI here, esp. in a public forum?  Oh well, blame the morphine.  And my general disgust at the DEA and War on [some] Drugs.)  Now I'm pondering a graph correlating length of blog posts, or maybe words per minute, or perhaps just general verbosity and frequency of tangents and/or parenthetical expressions and run on sentences, vs. the amount of drugs in my system...  But I digress.  Yet again.

One more comment wrt chemo and side effects and the drugs...  While the side effects continue to be extremely minimal (the hiccuping being the most annoying, which really isn't something I feel I can complain too strongly about), I'm still not technically done with the first round yet.  The all night IV marathon is done, but I continue to receive Prednisone (the P part of RCHOP) daily in pill form for a few more days.  And that is likely contributing to my overall feeling of well being, and I've been warned that when that stops, my general emotional and physical state could take a significant drop.  So I'm prepared for that, and I guess I ought to just enjoy each day for what it is, and take things one day at a time.

Wow, another huge post.  And I still feel like I have a backlog of things to ramble about.  I hope I'm not starting to bore my readership.  Time to take a bit of a break, and hopefully they'll be here soon to take me to the MRI.  [They're here now...]

Holy shit weight gain

In the long term, weight gain will be good.  I dropped from about 149# to around 126#-127# over a roughly 8 month period.  Not good.  Losing a little bit of extra fat is one thing.  But at that level, I was losing muscle mass, and starting to look seriously emaciated.  (I'm 5'9")  Potential further weight loss from chemo (and side effects) has been a big worry of mine.  (Yes, I realize I'm currently very close to Oaksterdam.)

From early Thurs AM to early Fri AM (so including a good chunk, but not all, of the chemo), my weight shot up about 7#.  I didn't believe it, as it was a different scale, so I said get the other scale.  Same result.

The daily weighing (am I just a piece of meat?) isn't until the early morning hours (also the time of the daily blood draw), but I was a bit concerned about the weight gain, so I asked to be weighed this night anyway. So now it's been only about 17.5 hours, and I've put on *another* 10#.  Again confirmed on both scales.

Obviously this is nearly all water weight.  They're purposefully pumping me full of lots of fluids, partly to try to prevent kidney damage from the chemo drugs.  But still, this is a HUGE differential.  Have I really taken on 7L more of fluid than I've expelled?  I suppose this can somewhat be calculated by looking at my charts, minus the unknown figures of how much I've eaten and drank, but that could be estimated.  The nurse is contacting the doctor now to discuss further.

I'm happy

Maybe it's somewhat the morphine talking, but I do feel in a good mood right now.

I'll have more to post later complaining a bit about last night (which had a fair degree of suckiness), and other nitpicks I'm having with being in the hospital, but I think right now it would be nice to have a post that focuses on the positive.

First of all, thank you for the tremendous outpouring of emotional support from all of you (by blog, email, facebook, phone, and in person).  While I don't have the time to personally respond to each and every one of you, please do know that it means a lot to both me and Lorien how much kindness and caring and love we're receiving from our extended community.

And offers of support.  Lorien is coordinating babysitting help.  I think Alicia set something up for meals, but I can't locate it right now.  Lorien, can you elaborate?

I am up for seeing visitors starting tomorrow if anyone wants to stop by the hospital.  My only scheduled procedure tomorrow is an MRI, roughly between noon and 1pm, but I've come to learn how accurate hospital times are (not).  Please coordinate details with with Lorien.  I am officially immuno-compromised now as a result of the chemo, so I do make the following requests -- (1) Please wash your hands thoroughly immediately upon entering the room.  (2) If you are sick in any way, even a mild cold, please don't visit.

That being said, I have some very good potential news to report.  I spoke with my oncologist early this evening, and he thinks I'm doing very well (better than expected), and that there's a chance I might go home tomorrow.  I don't believe it, and my guess is Sunday is more likely, but nevertheless, it's good to hear.

He also said that the preliminary results from the bone marrow biopsy are, if I recall his wording correctly, "grossly negative" for cancer.  (That's good.)

Additionally, the side effects that I'm experiencing from the chemo are currently extremely minimal.  Yes, I know that that could change, but right now I'm taking one day at a time, and rejoicing with what I do have.

And finally, my overall level of well being is significantly improved.  I'm coughing much less, the chest pains are hugely decreased, the trouble breathing is hugely decreased, all the negative effects I was having after eating are hugely decreased, as is the pain in my right side.  I'm still way far from declaring the way I feel "normal", but compared to how horrible I was just a short time ago, it's a wonderful differential.

And while I won't be posting all the time exactly what I'm listening to like jg does (OMG I'm so happy I have the laptop loaded up with music), I thought the following lyrics from Leonard Cohen, which were playing when I decided I wanted to blog and what the title would be, are applicable.  This is from his new CD, "Old Ideas", which was a gift just sent by my sister-in-law Laura.  It's the refrain from the lead track, "Going Home":

   Going home without my sorrow
   Going home sometime tomorrow
   Going home to where it’s better than before

   Going home without my burden
   Going home behind the curtain
   Going home without this costume that I wore

Quick update

Rich started the chemo last night.  Other than sleep deprivation, he's doing fine so far.

Thank you and how you can help

First of all, I'd like to thank all of you for the outpouring of support.  We've been overwhelmed by so much love and well wishes from everyone.  We haven't been able to return every email, but we've read them all and they mean a lot to us. Several of you have tried to IM, SMS, or Facebook message me, and I apologize that I haven't been able to respond in real time (or sometimes at all).  

Many of you have asked how you can help us out. I've got babysitting for Dylan lined up through Tuesday, and hopefully Rich will be discharged around then and we won't need intensive help with him every day any more.  However, taking him off our hands for an hour or two so I can catch up on chores or spend some quiet time with Rich will continue to be much appreciated, so those of you who've offered - I will take you up on it.

For some reason I thought that I wouldn't need help with food.  We really didn't after Dylan was born since Rich was off from work and our parents were here.  I've been running around like a hummingbird on methamphetamine for the past two days, and last night I hit a wall, and took Alicia up on her offer to set up a Mealtrain account for us.  Here's the link: http://www.mealtrain.com/?id=m6lyj3rhwqut. Rich can't eat spicy or acidic foods, but that's our only restriction. Thanks in advance - if I'm not visiting Rich, looking after Dylan or driving between the two, I probably want to be sleeping, so this sort of help would be wonderful.

And here we go...

Well, almost.

So earlier I got the port in me.  Specifically the Power Port (tm).  I'm not kidding.  They gave me this whole fancy color packet, with all of this schwag, and it's got a snazzy logo.  (The schwag that is.  I'm not sure if there's a logo on the port itself, although I can't say that I would be completely surprised if that were the case.)  Aren't you glad your health care dollars are going towards marketing efforts on behalf of pharmaceutical companies?

I'm pretty much assuming that the MRI isn't happening today.  Which isn't a big deal.  Of all of the poking and prodding and scanning, it's the one that's not particularly time sensitive and can wait until after the chemo starts.  And I think it's the one that's the hardest to schedule on a short notice.

The specific chemo regimen that I'm getting is known as RCHOP, where R = Rituxan, C = Cyclophosphamide, H = Doxorubicin, O = Vincristine, and P = Prednisone.  Makes perfect sense, huh?  And I thought CS acronyms were bad.

The basic premise of chemo is to load your body with nasty toxic chemicals that kill cells that divide rapidly, which tends to describe cancer cells.  The problem is limiting the damage it does to the rest of your body, including cells that normally divide rapidly -- like hair follicles, which is why you generally lose your hair.  And there are a whole host of other possible side effects.  I'm not going to depress myself by trying to list them all here.

The good news is that most everyone seems to think that in the short term, it's going to make me feel substantially better.  That I've got this huge tumor that's wracking the area inside my chest, and that as soon as we can make it start to get smaller, I'll start to feel better.  Let's hope they're right.

So I'm not quite on the chemo drugs yet, there's first a few other pharmaceutical prereqs that have to happen first.  But that's starting now, and the chemo itself will follow.

The current plan is for this all to happen every 3 weeks for about 6 months.  Wish me luck.

Just say Yes

May Nancy Reagan be damned.  I'll take my drugs and have no qualms about it.

Googling around, 2 mg does seem like a pathetically low dose.  But it is enough to make a difference for what I need it for right now.

The past few days

The past couple of days have been a whirlwind of activity.  Thursday of last week I had some blood work, Friday I had a CT-guided biopsy, and Saturday I had a PET scan.

Then the waiting.  I got the results of the PET scan on Monday, but the biopsy report didn't come until Tuesday.  I had to postpone my oncologist appointment until later in the morning so that we had something to work with.

In little more than a day since coming out of that visit, I got a second opinion with an oncologist at CPMPC in SF, found time to get a haircut, and packed some things up and got admitted to the hospital.

Why a haircut you might ask?  It does seem a little silly, since in a matter of weeks I'm going to lose all of my hair.  But my hair had gotten so unmangeable, because I had been putting off a number of things that I really should have done (also going to the dentist) because of how bad I was feeling.  So I think it is making me happier to have more manageable hair in the interim.  And it will be a little less crazy when it starts falling out.  I just went to a cheap place as a walkin and said part it on the side, very short.  I think it's the fastest haircut I've ever had.  Not quite a buzz cut, but not that far from it.

Last night was a bit mixed.  Lorien came in along with Dylan to see me admitted, then went home to put him to bed.  She came back later (sans Dylan -- thanks Erin for the babysitting!) to keep me company.  I had been feeling okay, but then shortly before she was going to leave I had been trying to go to the bathroom and started to feel dizzy. Lorien was trying to help me back to the bed when I passed out.  Which of course then led to a flurry of activity by the staff here, and both Lorien's departure and my bed time got pushed back quite a bit. Ultimately I got a decent night's sleep with the help of pharmaceuticals (probably the best sleep I've had in a while), but beforehand my chest was pounding, my heart was racing, I was having trouble breathing, and although I kept needing to cough, I could barely get anything out.  It really sucked.  The past couple of nights at home had been getting progressively worse.  I'm beggining to think that I may have gotted admitted just in the nick of time.

Today overall has been much better.  I've been poked and prodded and wheeled around for various tests.  So far I've had a bone marrow biopsy, which was the worst part.  Damn that was not pleasant.  Jg, I can only wonder, is a transplant orders of magnitude worse?  After that I had an echocardigram (I was wrong before when I said EKG), and an ultrasound.  Later will come a portacath placement -- where they basically put a port in me that's going to stay in for the duration of treatment (so like 6 months) that they'll use to administer chemo (and I think anything and everything else they want to give me).  The worst part of waiting for that is that it's a surgical procedure and I can't eat or drink anything until it happens. And the best time estimate I've gotten so far is 2:30 PM.  So I'm sitting here watching the clock, blogging, and listening to Bob Dylan. (I'm so glad I loaded up the laptop with music.)  Finally I'm also supposed to get an MRI, although I think that might be the hardest to schedule, and the least time sensitive, so that might get pushed to another day.

More on what's in store for me, like the chemo, later.  I'm starting to get a headache and need to take a little break.  I got a low dose of morphine earlier in the day.  It wasn't really enough to get high off of, but it did take the edge off of things, make me relaxed, and best of all, the coughing was almost entirely gone.  I'm trying to persuade them to give me some more.

Another semi-random (non-cancer) question

I have a pair of eye shades, pretty cheap, just something I bought at a drug store.  Useful when you're say trying to get some sleep in a hospital and lights keep going on and off.

The problem is they apply a bit of pressure against my eyes.  Not enough to be uncomfortable, but enough that when I wake up my vision is all blurry and it takes a while to stabilize.  (Which is why I'm typing this now in a huge font.)  Is there any way around this?  Are more expensive shades designed differently to take pressure off of the eyes?  (And if so, any suggestions for where to pick up a pair?  The Internet isn't very practical if I want them now.)   Or is this all just a consequence of aging -- whatever the condition is called that causes your eyes to stiffen up I believe and need reading glasses?

Gotta go get an EKG.  More later.

Things that are happening other than Rich's problems getting hospital wifi

Rich, you're so funny.

Anyway, for those of you who'd like an update on what's going on other than Rich's connectivity travails:

Yesterday we went to CPMC in San Francisco to get a second opinion, which turned out to be the same as the first opinion. Apparently the regimen for this kind of lymphoma has been used successfully for decades and Rich would get the same treatment anywhere in the world.  So we opted to go with treatment closer to home instead of in SF or Stanford, although if there are complications further down the line, we can always pursue other avenues.

Rich will be at Alta Bates Summit in Oakland until some time early next week.  He's undergoing a battery of additional testing today and will start chemo today or tomorrow. My understanding is that it's just one day of chemo for this round, but they want to keep him around for a few extra days just to keep him under observation.

He will probably want visitors at some point, but not quite yet.  Stay tuned.

Not in the mood to be a sysadmin

I'll write more later, but this gist is things moved very fast today and I was admitted to the hospital this evening to begin treatment tomorrow.

What I can't get over and wanted to rant about (and probably few of you care about it, but it's my blog and I want to rant) is the annoying redirection system they have here where you have to agree to some policy before general Internet access starts working.  Aren't things just supposed to work on a Mac?  Oh yeah, except when they don't.

I finally have things working on my laptop right now, but it required using both ConnectBot on an Android phone and looking at the network settings on an iPhone and some network fiddling on the Mac to get there.  (How do non-tech people deal with this?)  I was actually pretty damn floored when the doctor came in and asked if there were any other questions that I had, and when I responded that I needed to know the IP address of the DNS server that he left the room and came back with an iPhone on the network settings screen that answered my question.  (And why doesn't the Android network settings tell you that?  I should write a quick app for that...)

Anyway, I'll get back to more cancer news later tonite if I can.  Right now I'm kinda starved and hoping that Lorien arrives soon with some food.

Some bad news

Since I have a bit of a tendency to be verbose, here's the tl;dr version:

I have cancer.

I guess that's starting to get a little bit easier to say.

The slightly longer version is that this is the only spam I will send about this, and if you want to keep up to date in the future, go to http://richandlorien.blogspot.com/

Now on to more details, for those of you who care to read further.

Specifically, I have mediastinal B-cell lymphoma.  For any of you lacking basic Wikipedia skills, the mediastinum is an area of the chest.

There are two bits of good news to report.  One is that the cancer has not spread to any other parts of my body.  The other is that it is likely curable.

As much as I'm not particularly happy about a diagnosis of cancer, I realize that it could be much worse.  And it's good to finally know what's wrong with me.  I've been sick to some extent for 8 months now, unsure of why.  I had been diagnosed with GERD, which obviously in retrospect was wrong.  What's really going on is that I have a large tumor in my chest that's pushing on my internal organs and therefore leading to a lot of the same symptoms as reflux (including trouble eating, chest pain, and coughing).

I saw an oncologist today in Oakland who wants to begin treatment as soon as possible.  Specifically, he thinks I should have chemotherapy, followed by radiation.  Future chemotherapy would be on an outpatient basis, but he wants to initially hospitalize me for about 5-6 days.  I was able to get another appointment with an oncologist at the California Pacific Medical Center (CPMC) in San Francisco for tomorrow to get a second opinion before starting any treatment.

You might wonder why I'm blogging about this, advertising it in such a public forum.  One is just a matter of practicality.  I'd like to keep whomever wants to know what's going on in the loop.  But I won't necessarily have the time and energy for too many individual email or phone conversations.  And while I'm initially also sending out this one post to a fairly large audience -- including family, close friends, work colleagues, people I knew well in the past but haven't kept contact with as much as I'd like, people that my relationship with is a bit more casual and/or infrequent -- this will be the last such spam.  So if you want to know what's up beyond this, follow our blog at http://richandlorien.blogspot.com/

And I've already broken some of my basic principles of privacy (like not sending medical information over insecure email -- why after all of these years can't we have a commonly used means of secure communication?), and Google already knows so much about this, that there's really not much lost by being completely public about this, even to any total strangers who might come across this blog.

And maybe it's not such a bad idea for people to share the bad things in life, so that when something bad does happen to them, they know they're not alone.

And hopefully it will be a bit therapeutic to write about some of this.  As well as a way to kill the time.

And I should confess that I might not have thought of it as an option had it not been for my friend jg, who was diagnosed with leukemia back in the fall of 2010, and has been blogging about it at http://www.jgwkia.com/ .  I have appreciated reading his blog in the interim, and I really appreciated now being able to go back and look at some of his older posts.  And although I may not have a catchy slogan (jgwkia stands for "jg will kick its ass"), his positive thinking throughout his ordeal has made an impression on me.  He's also one of the first people I turned to last week when I felt that I needed to talk to someone about this.  It reminded me a bit of when Brendan called me first after his house fire, since I had also had a house fire.

So I'll do my best to keep things updated on the blog, but don't expect any particular frequency of posts.  Even in the best of times I sometimes have a problem with follow through, and I'm sure some of the times coming up will be a significantly harder times.

A lot of people have already asked how they might be of help.  I don't have a lot of specific requests right now, but the main avenue of help (for those that are local) will be helping Lorien to take care of both me and of Dylan, who is now 16 months old.

That's it for now.  Yup, I was right, that ended up being way longer than I had thought.  Thanks if you actually managed to make it until the end.

- Rich

16-month stats

Dylan had his 16-month well check on Thursday.  To our amazement, he's not such a little guy any more.  He weighed 22lb 4oz (34th%ile), is 32 inches long (64th%ile) and his head circumference is 49cm (93rd%ile). 

In other Dylan news, he's now walking like a champ (he started at the end of December), and is working on tooth #16, a particularly recalcitrant molar.  He's also learning new words all the time, although it's often difficult to understand what he's trying to say.

Here's a pic from a couple of weeks ago on a hike up in Tilden Regional Park, where he did some of his own hiking for the first time.

Festivals of Light

This holiday season has been packed full of bright activities.  We took Dylan up to the Tilden Merry-Go-Round to see the lights.

 

We also participated in our neighbourhood luminaria Christmas eve display for the first time.  We had some friends over and went for a stroll along the candlelit streets.

And Hannukah wrapped up a few nights later.  I love it when Hannukah falls at the end of the solar year.  

I baked some cookies.

Dylan enjoyed the candles, but I wasn't able to get a shot of him like last year because now that he's got motor control and other big-kid skills, he was hellbent on setting himself on fire.

We hope everyone who reads this had a happy holiday!

Thanksgiving in Indiana

Thanks to Larry and Galit for hosting the whole family in Indiana. We spent the long weekend hanging around the house, and going for walks.

Rich has gotten the entire photoset up on Flickr, which you can see here. Here are some highlights:

On a walk with Larry, Dorothy, Lorien, Matthew, David, Laura, Steve and Dylan

Dylan and Aunt Laura at Ball State University

Dylan with cousins David and Matthew (Renoir, eat your heart out)

Dylan with Grandmom and Grandpop

All the Fromms (back from left: Larry, Galit, Dorothy, Eli; front: Rich, Lorien, Dylan, Matthew, Laura, David, Steve)

Dylan rides his trike

We have a gazillion pictures from our Thanksgiving trip to Indiana to sort through, but while you wait for those to be posted, here's a video of Dylan on his trike, taken yesterday.

Dylan's second Halloween

I can't believe we're into seconds now!  We carved the pumpkins into shape sorters for Dylan to play with.

 Dylan was a monkey (costume courtesy of Grandmama and Grandpa), and entertained the local trick-or-treaters by butt-scooting around on the sidewalk outside. 

You can find more pictures in our Dylan Y 1 Q 1 photoset.

13 month stats

We had to reschedule Dylan's 1-yr wellness appointment a couple of time, and it ended up getting pushed out until today, when Dylan is actually 13 months. He weighed in at 20 lb 8 oz, was 30.25 inches long and has a head circumference of 48.5 cm.

By the way, Dylan's birthday party pictures are up on Flickr here. There are many babies in pumpkins, like so:

 And here's Dylan trying his first cupcake.  After all our angst that he was going to abandon healthy food and go on an all sugar diet given his first taste, his reaction was more "meh".

Kicking it Toronto-style

Dylan and I took a little mini-break to Toronto to visit the family last week.  We had visions of crisp fall days and bright sunshine (or at least I did), but unfortunately the weather didn't cooperate. However, we did get some breaks in the rain and got outside to make the most of them.  Here's some pics, courtesy of Grandpa Fono.

Dylan learns to climb stairs

Dylan and Mommy and Riverdale Farm in downtown T.O. (probably our favourite stop on this trip)

Dylan learning about "fall"

3 generations

Goats are just like big cats

Dylan and Grandmama on the teeter totter at Sherborne Commons in the Toronto portlands

Men in plaid at the Don Valley bike and pedestrian path

OMG fall colours!!

Dylan and Grandmama at Huntington Park near the house

And we managed to get a group shot of the whole family, minus Rich who was languishing in California sunshine, and Grandpa George, the photographer.

Happy Birthday Dylan !!!

On Thursday, Dylan finished his first trip around the sun.  Here he is playing with his new piano.  He also got to open awesome new presents from all his grandparents (pics to come once they're assembled).

Dylan continues to scoot around on his butt, and walk around holding mommy's or daddy's hands.  He's also taken to pushing around furniture (since mommy and daddy are mean and won't buy him a walker).  He's got his first word (can you guess what it is?) and his first sign, "all done", which he uses when he's done a meal.