Misc. Updates #6
Back To Plan Z
Because my surgery in Los Angeles on 12/10/20 was cancelled, it’s back to the grind trying to figure out Plan B, Plan C, Plan D…
As always, I’m running multiple plans simultaneously so that I always have backup options in play.
Los Angeles Plan with Dr. Sheikh
I’m in a “wait and see” holding pattern with Los Angeles. When COVID numbers drop and more ICU beds become available, the hospital will call me to reschedule my surgery.
On 12/8/20, the hospital said that it would likely be at least 2-3 weeks before they call me back for surgery.
Today, I saw a headline that 1 American is dying every 40 seconds from COVID. Even though vaccines are on the way, it will be quite awhile before widespread distribution is completed with the general public.
In the meantime, people will be gathering for Christmas and New Years. Because of the delayed incubation period, the COVID numbers will probably peak in the 2-4 weeks after New Years. The worst is yet to come.
So I’d be surprised if I’m able to return to Los Angeles until sometime in mid- to late-February.
Seattle Plan with Dr. Starnes
It took 5 weeks of effort, but I finally got a video call consult with Dr. Starnes yesterday.
I had really hoped that he would give the green light for surgery and work me into the schedule soon. But he is requiring me to do a celiac plexus block (CPB) first, which means a delay of a few months, because it takes FOREVER to get a CBP—anywhere from 3-5 months.
As a reminder, a celiac plexus block is an outpatient procedure where 2 needles are inserted through the back, past the spine into the midsection near the celiac ganglion nerves (about 2-3 inches below the sternum). Anesthetic (and sometimes steroids) are injected to numb the nerves. If the patient is able to eat without pain, it’s confirmation that MALS surgery should provide relief.
Thankfully, I had already started the process back in October for getting a CPB scheduled. Again, I’m running multiple options in hopes of getting the soonest possible procedure date.
2 Options for a Celiac Plexus Block
CPB with Dr. Christiansen in Portland
TIMELINE: I’ve been in process with Dr. Christiansen for 2 months now and have another month to go.
It took about a month to get the referral completed.
It took another month to get a phone consult, which happened yesterday 12/15/20.
It will be another month until the procedure which is scheduled for 1/19/21.
That would put MALS surgery with Dr. Starnes sometime in February or March.
PAIN RELIEF: Dr. Christiansen uses 50% fast acting anesthetic that works within 10 minutes, plus 50% long-action anesthetic that should last up to 12 hours.
BENZOS: Dr. Christiansen can do a CPB without benzos and regularly does it that way, so I’ll likely recover quickly enough to eat and confirm that the CPB worked.
NEXT STEP: Now I just wait for the CPB procedure on 1/19/21 and hope that insurance covers it without a fight. It’s possible that I could get the CPB done sooner if there are cancellations, BUT… that also depends on insurance. Dr. Christiansen said that it’s usually quite a fight with insurance companies to get a CPB covered. She’s used to that and has a process for contesting it, but that could mean further delays past the 1/19/21 date.
CPB with Dr. Jeffery Chick in Seattle
TIMELINE: I’m just starting the process with Dr. Chick, who Dr. Starnes referred me to yesterday.
PAIN RELIEF: Dr. Chick’s CPB patients report having sustained pain relief for anywhere from a few hours to 20+ days. That probably means that he uses steroids in addition to anesthetic in the block mixture.
BENZOS: I’m not sure if Dr. Chick will allow me to do the CPB without taking Versed or other benzo drugs. This is important because I react very badly to benzos and might not wake up in time or be able to eat to confirm if the CPB worked.
NEXT STEP: I have a phone consult on 1/15/21. Then we would schedule the actual CPB, which would probably be done in mid- to late-Feburary.
That would put MALS surgery with Dr. Starnes sometime in March or even April.
Which To Choose?
I don’t seen an option that gets me surgery any time soon. At best, it could be back to Los Angeles in late January. More realistically, it will be February or March regardless of whether it’s Los Angeles or Seattle.
I can imagine a scenario where both Los Angeles and Seattle work out for surgery dates around the same time. If that happens, I have the same conundrum of which to choose.
For general care and post-operative pain management, I lean toward Los Angeles.
But for confidence in the surgeon and convenience for all people involved, I lean toward Seattle. So that’s probably what I’ll choose if it comes down to a tie.
Endurance Strategies
In the meantime, it’s becoming increasingly harder to wait things out. My pain and discomfort are getting worse.
It used to be that I could have months with no pain and fatigue. Then weeks. Then 2-3 days. Then a few hours.
Now it seems like I’m dealing with pain, discomfort and fatigue 24/7. I wake up already exhausted. It’s hard to find a comfortable position, even when lying down. The only relief seems to be when I don’t eat at all. Even the liquid nutritional drink is difficult to tolerate.
My strategy for making it until surgery is:
Give myself permission to be sick.
I have to remind myself every day that it’s okay if all I accomplish that day is being sick and resting.
Taking life just an hour at a time.
Just get through the next hour and don’t worry about what comes after that.
Psych myself up for dealing with “crashes”.
The start of a “crash” isn’t too bad. Mostly just some brain fog and fatigue. But coming out of a “crash” is really unpleasant. The gut pain increases along with a somewhat painful head buzzing that is difficult to describe. Most “crashes” last about an hour, with the last 15 minutes just lying in bed slowly regaining consciousness. I’m in pain, but unable to move. Even after that, it takes another 30 minutes before I feel well enough to get out of bed.
Because I know what’s coming, I sometimes have a bit of anxiety before a “crash”.
After a “crash”, I have more anxiety about eating. Eating and drinking are something I dread. I’m always trying to choose something I think my body can tolerate, but every food has betrayed me at one point or another. So it takes courage each time I have to eat again.
To deal with all of this, I have certain “go to” phrases I lean on:
This too shall pass.
Now is not forever.
You’ve been here before. You can do it again.
This is nothing compared to what else you’ve been through.
So far, your success rate of getting through difficult days is holding steady at 100%.
Distract myself with whatever I can.
I’ve splurged a bit by subscribing to a few video streaming services like Disney+ (The Mandalorian!) and CBS All Access (Star Trek Discovery and Picard!). That helps pass the time when I have to be in bed.
When I can, I try to write some using some online writing prompts.
I can usually pass an hour or so playing Star Wars Battlefront II on the PS4 at night. By now, I know the game so well that I can put my brain into automatic and just shoot the bad guys for awhile.
Sometimes it helps to walk veeerrrrrrrry slowly—as slow as the treadmill can go—for 15-20 minutes.
It’s nice to play a quick, easy board game on the evenings where I can manage it.
I miss being able to play music or draw. Those take more brain power than I have currently, but it helps to have those to look forward to in Life 2.0.
I know that relief is on the way and that I can make it another few months. For now, I’m going to get through today.