Clamour Underbridge

Humpday and its update

    If you are not one of those folks effected by Hurricane Irene, be grateful. If you were effected I hope that your power is back on and the damage isn't severe.

    I wanted to give everyone a shout out to let you know that I am no longer at Regency but have been put back in the hospital at Audubon. The room number is 4115 (i think). It's in the Oncology Unit so if you enquire at the nurse's station. I was admitted for the treatment of a urinary tract infection and to get my pain management meds back in order. Tuesday, however, Dr. Choudrey discovered a new Tumor (#4) behind my left ear and trailing down into my neck. It appears to be completely benign. Nevertheless, he immediately rearranged my chemotherapy schedule. I'm now getting chemo every 12 hours. That plus IV antibiotics plus physical therapy and occupational therapy are keeping me pretty busy. I'm in OT/PT for the damage done by tumors #2 and #3. My left hand is still mostly a functionless claw and I'm paralyzed from the waist down. There has actually been some improvement with my hand (I'm just impatient and being a drama queen) but my legs do not work and I'm incontinent. There is still lots of time and the expectation that I'll improve a great deal. It would be miraculous, however, for me to make a full recovery.

    I'll probably be at Audubon through the long weekend. No promises, however, since my insurance, UHC, is inclined to demand that I  return to outpatient or nursing home care as soon as possible whether my doctors and I think it's a good idea or not. Just so you'll know (and i can vent) UHC has been a thorn in my side since January 1. I am very disappointed with their services and hope to have the opportunity to switch to anything else when UofL has open enrollment this year. It's UHC's fault that I was placed at Regency (a dreadful experience which I hope to never repeat) and their inability to provide an insurance card or basic information at the first of the year wrought disaster for everyone that was trying to bill me before and after December 31. If you haven't noticed, I dislike them a lot.

UHC, however, is not worth the aggravation of listing all its faults. I wanted to get this note out before rumors started flying since information often shows up on Facebook in bits and pieces and from various sources.  I can complain about UHC any time.

    The other rumor out there is that I am moving. That's true. My lease is about to expire and my current apartment can not be made barrier free or upgraded to handicapped accessible. Finding a new place will be a long process. I hope to consult the Center for Accessible Living and some other local experts before making any decisions. At the moment, all my worldly goods are being boxed up by benevolent pixies, fairies, gnomes and some normal people (don't ask how they slipped in).  If you've heard anything else let me know before it grows legs. I'll be happy to share bylines with you.

    Keep all those prayers, positive energy, well wishes and healing magics coming my way if you have it to spare or to give. I appreciate it in a big way. It means a lot to me. I remain hopeful and resolute (but still a bit wacky)

An update for a Friday evening

Today I got the news that I will probably be out of commission until 2012. That's a bit daunting but at least I've been down this road before and know what to expect and what to look out for.   I remain bitterly disappointed with United Health Care and its lousy reputation with and choice of nursing home facilities. With Humana I was placed in a top tier facility with a private room and a first rate rehab staff. UHC has me in a third rate site, double room, no Internet or TV and a limited staff of occupational and physical therapists. You can color me unimpressed with UofL's second rate choice during the contract dispute with Humana. Since I was just finally getting on my feet and back to work after my first bout with myeloma, I did not have a lot of time to build up resources before the two new tumors reared their ugly heads. This time things are going to be a little more drastic. My landlord has been notified that I am giving up my apartment and putting my belongings (mostly books) in storage while Farris and Michael search for an accessible apartment for me. There is a chance that I'll continue to need the wheelchair for quite some time if not permanently. So with my apartment in storage, no utilities, and no car payment, I should be able to pay MD bills and insurance with the 60% of my salary UofL pays for disability. For the next few weeks I'll stay at Regency. At the beginning of September I'll go back to the hospital for a week or so of chemo before being sent back out to a (hopefully better) nursing home. There will be scans and biopsies to make sure no new tumors are growing and hopefully the chemo will do a better job of cleaning up my bone marrow. If not I will have to be evaluated for a bone marrow transplant in December. This transplant is from me to me. No donor required so don't be nervous. That's enough dreary news for now. I could be on my feet after my next chemo and able to give up my spot at a skilled nursing facility. Somebody else is doing all my packing and moving. I loath moving with every fiber of my being so I'm ok with others taking charge. Last time I hired a company to move me after numerous friends came to my place to pack, hold my hand and remind me to breathe. While cancer is, indeed, a bitch, I'm not throwing in the towel just yet and there are even some things going quite well. My left hand, for example, is improving. Thank you for your prayers, support, well wishes, positive energy and healing magics. I'm very grateful. See you later. Jim

I'm in remission and some other stuff

It has been a tough few weeks but I got some good news at the oncologist’s office today.  My blood work from May and my tests today indicate that I am in remission and don’t have any active myeloma marrow.  That is the best news you can get in the living with cancer category.  However…

I did mention that it’s been a tough couple of weeks.  Three things have me wound up.  First--my very dear friend, Mark Brown, passed away.  The funeral was last Thursday in Cloverport.  I had the service and it was well attended by his family and numerous friends.  Mark will be very much missed.  Second—Farris, my little brother, discovered some damage to my car while he was visiting.  The door handle on the passenger side was snapped off.  Last week the door handle on the driver’s side was also broken off during the night.  Monday, I spent the morning at a body shop getting the doors disassembled and the handles replaced.   Third—things didn’t go completely my way at the doctor’s office.  Part of the damage myeloma does to your body is bone damage and deterioration.  I have either a pinched nerve or a slipped disk in my neck.  It’s been aching and painful for days.  Tomorrow I will be heading to Audubon for a body scan and lots of X-rays.  I will also be having IV treatments once a month or so to help increase my bone density.  Compared to chemo it should be a breeze. 

The only other news I was waiting for from the oncologist was my maintenance schedule.  I won’t be having maintenance chemo other than my take-home Revlimid.  He also didn’t release me to return to work full-time.  I will continue to press him on that and I don’t intend to stop working.  Stay tuned for that battle.  It should be fun.   

 

A tardy update with some happy news

Things have been really boring lately.  I’m pretty happy about that. A few things have changed since I last sent out an update.  The first thing is the end of my chemo treatments.  The second is that I have returned to work part-time. 

Things got really confusing in May.  I was at chemo.  I had eight more appointments for chemo and things were rolling along just like they have been since January.  Then one doctor noticed that I had been having one kind of chemo in conjunction with radiation and the same kind of chemo in conjunction with the super expensive Revlimid, which I take at home.  That kind of chemo is called Velcade.  There is a maximum amount of Velcade a person can have in a year.  I was at my limit so they cut me off.  My chemo appointments were canceled, my Revlimid was reduced, and I was sent home to recuperate.  I have a follow-up appointment in two weeks to confirm my remission.  Oh.  Didn’t I mention that they also took six vials of blood to evaluate me for remission?  I also have to go in every six weeks to have my Borg implant checked. 

After chemo ended I had an appointment with my primary care doctor.  She was amenable to persuasion and allowed me to go back to work part-time.  Her condition was that I not go back to work full-time until the oncologist says it’s OK.  So far I’ve made it through two weeks.  After six months of hanging around the TV and reading JV fiction full time, showing up at work and having people need things fixed is a big change.  So I’m a little tired.  At least I’m tired because I’m doing something rather than being tired because I’m drugged to the gills and anemic. 

You might have heard that my god-daughter, Judy Beth, had a baby.  His name is Nathan and he was born today at 3 a.m.   I haven’t met him yet but there are pictures on Facebook.  Jun was here for two days along with my cousin Theresa and her daughter Trista (who just finished Navy boot camp and is being deployed to Bahrain).  I’m trying to decide whether or not to return to school.  It’s difficult to imagine not being in school.  Not having homework is nice, though. 

That’s all the news that’s fit to print and that I can remember.  I do have a column in this month’s Community Letter.  I’ll post it (the newspaper) soon.  There was a printing error and it’s being redone at the moment. 

Will chemo continue? The jury is still out.

Thursday will be the last chemo treatment for this round.  That's pretty good.  My latest blood work has finally crept into the normal range for all measures.  That implies that all my "bad" bone marrow is dead and the "good" bone marrow is beginning to make up for lost time.  That's really good.  If that proves to be true then there is the possiblity that round six's four treatments will be my last.  Rejoice!  Whenever the chemo ends there will be yet another bone scan for tumors.  When all that information comes in the doctor will be able to decide whether or not I'm in remission.  It'll be fun.  Yeah.

Of course there are a few hinks in the process.  My allergies are acting up so I sound like a bull frog.  The allergies created a little scare of the pneumonia variety.  Pneumonia is an automatic ticket back to the hospital.  I do not have pneumonia.  Dodged that one.  It's actually nice that the biggest trauma in my life at the moment is my malfunctioning cellphone.  That and there is the small matter of April 15 (18) creeping up.  I'm not procrastinating.  If I was procrastinating I'd be tidying up the apartment and reorganizing my library.  I still prefer Dewey, if you're interested. 

And now it's time for Ru Paul's Drag Race followed by Rachel Maddow.  Monday is Ladies Night.  See you later and wish me luck.

Chemo midterm

The oncologist stopped by to see me on Monday during chemo because I'm at the mid-point of my chemo schedule.  Part of what he stopped by for was to warn me that there could be another extension in my future.  It was just a warning.  If it had been an actual extension he would have already had the results from the tests he was having done on the massive quantities of blood siphoned out of me at the end of my treatment.  It wasn't quite half a liter but it was close.  I get the results on Thursday. 

After that I decided to get a snack and take a 14 hour nap.  That worked out pretty well. 

Today I talked to a doctor I haven't heard from in a long time--my chiropractor.  He was just checking in, asking me how things were going.  His office provided x-rays to the neurosurgeon back in those early scary days when it looked like I'd need surgery for the tumor in my neck.  He was very happy to hear that the tumor had disappeared with the help of a little nuclear radiation zapping.  I still think all those chiropractic treatments kept the paralysis at bay for a few months even with the pain caused by the nerve compression.  It also seems to me that the treatments isolated the effect to my right side, mostly the right arm, rather than allowing it to cut off everything from the shoulders down.  I'm also convinced that the reason I have been able to regain so much function is the way the chiropractic treatments protected my spine and kept the nerve pathways clear until the tumor maxed out all the available empty space.  Since the radiation treatments started within 72 hours of the paralysis and had an immediate and dramatic effect on the size of the tumor, the nerves weren't nearly as damaged as the neurosurgeon feared.  But I can't prove any of this.  It would be nice if peripheral neuropathy wasn't one of the main side effects of my chemo,  That means that even as the paralysis lifts I still have problems with my hands and legs because the medications interfere with nerve conduction and cause tremors, numbness and lose of fine motor control  Good thing I don't play the violin.

I'll have another update late Thursday or early Friday (remember the 14 hour nap part) to talk about my test results.  I asked him if there'd be extra credit.  He's been out of school too long and didn't get it.

No chemo this week but another quarter heard from

I’m having a seven day break from chemo.  That means I go to all the other doctors, fight with the insurance company over medical bills and do all the things a massive dose of steroids give me the energy to do before I collapse and sleep for 14 to 20 hours.  Hey, it’s a system. 

Today’s doctor was my primary care physician.  Let’s revisit the steroid thing for just a moment.  The point of steroids is making sure I don’t become one of those emaciated people living with cancer.  I’m sure you have a picture or personal experience in mind.  Well, for me it works far, far too well.  I’m from hearty peasant stock and could survive the winter with a store of leaves and roots.  I’m hoping to be a case study in a journal article or maybe an experimental subject for a hibernation study.   The doctor was alarmed.  Curse you Little Debbies and Oreos.  I have loved you over well.
 
Tomorrow it’s a trip to visit the laundry ladies and a throw down with all those folks that continued to bill Humana after UofL (in its wisdom) dumped Humana and switched to UHC on January 1.  That’s a series of conversations that won’t end tomorrow or any time soon.  The pharmacy at the cancer center will also want to see me sometime this week to pick up more steroids and the more-precious-than-gold revlimid.  The pharmacist prefers I start those the weekend before the chemo resumes.  I have to take a quiz and fill out forms every time I go the oncology pharmacy.  The FDA is serious about tracking anything related to thalidomide and making sure you know the information included on the patient fact sheet.
 
There’s not a lot of other news between the mood swings and the napping.  Some very old but new to me White Wolf game books have come my way so those are now in my pile of books to read.  I can’t survive on steam punk novels and the writings of beloved queer radicals alone.

Flying solo for chemo

I drove myself to and from chemo.  There was no drama.  While boring it certainly proved that I can do it.  The real drama was being awakened at 4:30 a.m. for the tornadoes.  Funny, though; the local TV news is saying city sirens did not sound.  Perhaps one of my neighbors has a weather alert radio or I heard UofL’s alert on my phone.  Who knows.  Regardless, it was worth about 20 minutes of TV news and most of “Sister Act” watching the storm drift through.  My neighborhood was spared but there were three touchdowns around, but not in, Louisville. 

Chemo was no fuss.  There was a new nurse and we chatted a little bit.  I read and napped the entire time.  My each and every visit CBC (complete blood count) came back fine, at least for me, with its usual anemia and low white cell count.  I am still a long way from needing a transfusion and my immune system sputters but still runs.  I drove home with no problems and then napped some more.  Napping as a lifestyle choice will probably not put me ahead in the race to success game but it’s very slacker. 

My next chemo is Thursday and then I’ll be treatment free for a week.  That’ll be nice. 

What's going on for the week without chemo

I'm in my seven day break between chemos.

The schedule is now a bit extra confusing.  Originally I was having six chemo treatments of two treatments per week for two consecutive weeks and the two weeks to recover.  My recovery period was shortened to one week after the first few treatments so I was excited about finishing early.  Now, however, the number of chemo treatments has been increased from six to eight.  The unofficial end of my chemo treatments is now mid-May.  That's still pretty exciting as far as I'm concerned.  I have no idea what kind of tests the doctors will give me to prove I'm in remission or how long they have to wait from the end of chemo until the testing starts.  I still think it's mostly all good news and I'm very thankful for it.

Now on to practical things--my next set of treatments begin Monday and, as always, I need people to tote me to the doctor's office and keep me company while cancer killing toxic chemicals are pumped through my borg implant.  It's not very exciting but the nurses are fun and there are snacks.  The dates and times for this round are:

Monday, February 21, 1:30 p.m.
Thursday, February 24, 1:30 p.m.
Monday, February 28, 1:30 p.m.
Thursday, March 3, 1:30 p.m.

The first treatment on Monday February 21 will be the longest because I have to have extra blood tests and get checked out by the doctor.  Eric usually takes that one.  The others last about 90 minutes (two possibly three IVs, five syringes of stuff coming in or going out).

Other than that I've been trying to maintain a low profile.  By "low" I mean reclining on the couch with my swollen feet propped up on a cushion.  Other than side-effects that involve me drinking lots of prune juice, the main grief I get from my treatments are feet the size of rowboats and big poufy legs.  If it was still the 80s I could corner the market on leg warmers and try to brazen it out.  As it is I just try to stay off my feet as much as possible and use my cane when I'm out and about.  Since the non-invasive but very slimy ultrasound proved I don't have any blood clots the doctor would prefer not to heap more medications on the pile.  My pill prep area already looks like a pharmacy shelf so I'm OK with that.

A few change-ups for my chemo treatments

It’s the month for changes and new stuff at chemo.  Some of the changes, like labs and blood work, are easy.  The trip to the hospital for the ultrasound was inconvenient but turned out well in the end.  This  time they threw me a curve.  New-to-me treatments have been added to the schedule.   Instead of two more rounds of treatments I will have four or perhaps six.  That’s why I’m having the blood work and labs every visit.   However, this means that I’m still going to be finished around my original finish date because my break between treatments was reduced from 14 days to seven when the first new drug was added.  The new schedule means I’ll have chemo through June as originally scheduled.  I’m not going to finish early after all. 

I was really looking forward to finishing “early” but it’s just not to be. 

Other than that bit of disappointing but not scary news, things are going as expected.  My legs are still puffy and swollen.  That’s one of the expected side effects of the medications.  I’m supposed to stay off my feet as much as possible and keep them up.  I’m also even more cantankerous and grumpy than usual because of the massive amounts of steroids I’m taking.  That’s supposed to be off-set by some other meds.  Well, sometimes it works and sometimes it doesn’t.  I’ll leave that to others to tell me.  Beware of doped up curmudgeon.  You have been warned.  Maybe I can go back to napping all the time. 

I hope this finds you and yours well and happy.  We’re also having dodgy weather here in Louisville so there are constant alarums of snow on the way and the sky is gloomy.  Personally, I prefer the dim twilight over the searing glare of noon but that’s part of the oddness not caused by the medications.  The cold and bad roads, however, I could do without.  I guess all of us are looking forward to the end of this winter for one reason or another.