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Rob was sprung from the hospital on Saturday and was able to spend Christmas eve at home – the best anniversary present ever. On Christmas day our dear friends John and Jo Ann brought a wonderful dinner of fresh crab and smoked salmon, which we were able to enjoy with Rob’s sister Marnie, who flew in from Rhode Island. Rob is now completely bedridden and sleeps much of the time, but he is comfortable and in no pain (he’s no longer needs any pain meds). This is remarkable since only a couple of weeks ago he was in excruciating pain from the sciatica — at least the radiation therapy worked for those symptoms.
His desire for food and drink has diminished, one of the signs that the end is growing near. There’s no way to know exactly how much time he has left, but we are focused on making his remaining time as comfortable and full of love as possible. The Hospice by the Bay team has been wonderful. It’s reassuring to know that there’s a number I can call 24/7 for help with any issue that might arise.
Thank you to everyone who has written. I read every letter and email to Rob, even though they are bittersweet for him. He especially likes to remember stories from his adventures over the years. Hearing is supposedly the last sense to go, so please keep them coming. He is incredibly sad that his life is being cut so short. One of the social workers explained that while we are losing him, he is losing all of us — everyone and everything in his life. Unbelievably difficult.
A number of friends have asked about visiting. Rob is sensitive to having people see him in this diminished state, and has asked that this final time to be spent privately with family and only a few friends.
If all goes according to plan, Rob will be released from the hospital this afternoon and we can celebrate our anniversary and Christmas at home. Yes, Rob was admitted to the hospital on Thursday after suffering a seizure at home. The seizure only lasted a few minutes, but it was terrifying to witness (luckily Rob doesn’t remember anything about it). Somehow I managed to call 911 quickly, and the Southern Marin Fire District station 4 paramedics arrived at the house in less than 10 minutes. The five or six guys who arrived were great and quickly had Rob in an ambulance to the Kaiser San Francisco hospital ER. We’re getting a little too familiar with this ER!
After about six hours of tests (blood, brain CT and MRI) and observations, Rob was admitted into the hospital for further evaluation. Yesterday Rob saw five different doctors including Dr. Liu. There is no definitive cause of the seizure, but the leading theory is that there are some circulating cancer cells in the fluid surrounding the brain. The WBR treated the brain metastases, but cancer cells in the spinal fluid can remain. As I mentioned previously, the inability of Xalkori (crizotinib) to cross the blood-brain barrier is considered its achilles heel. Although the cancer is still under control in Rob’s chest and abdomen, it is not necessarily under control in the brain. He’s now on an anti-seizure drug (Keppra) to help reduce the likelihood of another occurrence.
So where do we go from here? One problem we face is Rob’s lack of mobility. He has continued to get weaker physically, and has trouble walking. Hospice services can help with at-home care, and Marin’s Hospice by the Bay (HBTB) has an excellent reputation. For reasons I haven’t been able to figure out, if Rob goes into the HBTB program, his Xalkori (at $10,000 per month) will no longer be paid for. Since the drug is still providing significant symptom relief for the lungs and liver, taking him off of it would ensure his rapid decline. The Kaiser palliative care social worker tried to find a way to have Kaiser continue to provide the Xalkori, but to no avail. Once someone is transferred into hospice, Kaiser won’t provide any medications – no exceptions. Because of the cost of the drug, hospice can not provide it either. This is the first time since Rob’s diagnosis that Kaiser has denied us a treatment option based on cost or bureaucratic red tape.
Now, I’m trying to figure out if Rob qualifies for Pfizer’s assistance program. The response to my initial inquiry was no, they don’t provide assistance to patients who are in hospice – but since Rob was in the clinical trial, they will push the request up a level. I should hear back from them next week and hopefully it will be good news, but I’m working on some alternative plans if that doesn’t pan out.
I’m writing this blog post on the iPad from Rob’s hospital room, with lots of interruptions, so I hope it’s not too incoherent.
“Medicine sometimes snatches away health, sometimes gives it.” Ovid, born 43BC
Not much has changed in the past 2054 years! Most cancer treatments beat you up before making you better. Rob has fared remarkably well through the many different treatment regimens of the past two years. For the most part, the medicine was tolerable, and provided more relief than symptoms. Unfortunately this hasn’t been the case for the treatment of the sciatica. The five sessions of radiation to his lower lumbar spine, sacrum, and pelvis was uneventful, but the narcotic pain meds and steroids (to reduce inflammation around the sciatic nerve) have taken a serious toll. Hallucinations, mental confusion, and muscle weakness combined with other unfortunate side effects from the pain meds have made the past few weeks extremely difficult. However, it seems that the radiation is reducing the sciatic pain, and we’re finally able to start tapering Rob off the offending drugs. Only now, the fatigue from the radiation has set in, so although Rob’s pain is better, he is still extremely weak.
But wait, there is some good news. Rob’s latest CT scan, taken last week, shows that the cancer in his lung, lymph nodes, and liver — is stable! So, we just have to get him back on his feet so he can start to build some strength back and enjoy this reprieve, however long it lasts.
We have no plans for the holidays except for Christmas eve day when Rob will have a brain MRI to ensure that the WBR was completely successful in eliminating the brain metastases. It’s also our second wedding anniversary, a date neither of us expected to see at this time last year. We have some major celebrating to do!
(Oops, somehow this post was deleted inadvertently – so here it is again.)
Sometimes no news is good news, sometimes there really is no news, and sometimes there’s just too much going on (good or bad) to write a blog post. The past few weeks have combined all of the above. First the ‘good news’. We had a nice, quiet Thanksgiving with Rob’s long-time friend Suzanne. We all ate too much, and after three days of leftover turkey we had definitely had enough. This week we were treated to a visit by our dear friends Katie and Jason who flew down for a few days from Vancouver, BC. They helped out with various projects around the house, cooked us some wonderful Thai food, and provided much-needed humor and smiles. We have so much to be thankful for; wonderful family and friends, a great medical team, and even our precocious bengal cat. But first and foremost we are thankful that Rob is still here!
On the ‘no news’ front, we spent the past couple of weeks trying to unravel the mystery of Rob’s continuing sciatic pain. He saw a physical therapist and a pain specialist, had EMG (electromyogram) and nerve conduction tests to check for nerve damage (negative), and yet another MRI this week to look at the details of the sciatic nerve. Initially it seemed as though he might have a condition known as piriformis syndrome, where the piriformis muscle in the butt pinches the sciatic nerve. The treatment can involve Botox injections in the butt (buttocks botox?), and we had some good laughs about that possibility. However the docs didn’t think this fully explained the severity of Rob’s pain, hence another MRI. As anyone with cancer can attest, the uncertainty while awaiting test results is very stressful!
Which brings us to the ‘too much going on’ to write front. Rob’s sciatic pain has really overshadowed everything else in our lives for the past couple of weeks. Combined with the side effects from the pain meds, Rob has not been especially coherent, and has needed quite a bit of assistance with everyday tasks – hence no time to write for either of us. However, this morning we did finally hear from Dr. Liu with the results of the MRI – not the news we wanted, but news none-the-less. The MRI appeared to show a possible tumor at the S1 (sacral1) nerve root, which would explain Rob’s symptoms. Unfortunately, the images were not definitive, but given the circumstances it seems prudent to pursue radiation to treat the area. So this afternoon we hoofed it back down to South San Francisco for a consultation with one of the radiation oncologists. She reiterated that the scans were not definitive, but given Rob’s history she would recommend radiation to the lower lumbar region and most of the sacrum. The side effects should be minimal, and if it is cancer, Rob should have pain relief within one to two weeks. Whereas with the WBR Rob was fitted with a mask that kept his head in the same position from treatment-to-treatment, for other parts of the body they use tiny tattoos. Rob got three – one below his belly button, and one on either side of his belly. I think he might need some piercings next…
That’s all the news for now — hopefully the next blog installment will have mostly good news!
Two auspicious milestones to report today — the 100th blog entry in ‘Rob’s Adventure’ and, more importantly, this is the two-year anniversary of my diagnosis with Stage IV lung cancer. Leslie and I will never forget the day we got the bad news, the day our lives changed from being relatively carefree ‘normal’ people, to full-time cancer fighters. (A lesser milestone is that I quit Latitude 38 six years ago on November 1, which began four wonderful years of sailing and traveling.)
Anyone can keep a blog; not everyone can live with this type of cancer for two years (and hopefully longer!). It’s really a tribute to a great team of doctors and Leslie’s relentless advocacy on my part that I am still here and, on the whole, doing better lately. Just two more trips to the ‘brain bakery’, as my friend Rodrigo calls it, and I will be done with those treatments and can concentrate on regaining some strength. The blood clot issue will take longer to resolve and, unbelievably, we are opting for a daily injection of the blood-thinner rather than the slightly less reliable pills (the blood draws are almost as numerous as the injections!).
For those of you tuning in late, I have been though five different therapies now: 1) cisplatin/Avastin/Alimta; 2) docetaxel; 3) crizotinib; 4) Gemzar; 5) AUY922; and now back to the recently FDA approved criz (now called Xalkori) through Kaiser.
There have been many important developments in lung cancer treatment over the past two years. When I was first diagnosed there were limited treatment options. Traditional chemotherapy was really the only option. At the time of my diagnosis genetically targeted therapies were only starting to make their way into treatment protocols, and it wasn’t yet standard practice to test biopsied tumor tissue for known mutations such as EGFR, KRAS, and ALK. We insisted on having the EGFR test done since there was a relatively new targeted therapy, Tarceva, that was proving to be extremely effective for EGFR+ cancer. Unfortunately the biopsy tested negative for the EGFR mutation. Leslie spent hours scouring the internet for information on other options and stumbled upon news of a new drug from Pfizer, crizotinib, that was showing good progress in treating people with the EML4-ALK mutation, which is more common in never-smokers. She figured out how to get my tissue tested as part of a clinical trial and, amazingly, it was positive for ALK. I was able to enroll in Pfizer’s crizotinib clinical trial that had recently opened at Stanford, and when I did finally get on the crizotinib arm of the trial I had a dramatic response. Unfortunately, after about four months I washed out of the trial when the disease showed up in my liver.
After another round of traditional chemo (Gemzar), I opted to enroll in the Norvartis AUY922 clinical trial at UCLA, but withdrew after six weeks when the side effects, mostly vision-related, overwhelmed me. We had some very dark days as it wasn’t clear, after five different regimens, whether anything would be effective in controlling the now severe progression in my lungs and liver. Now, I’m back on the recently FDA approved crizotinib which was given the fancy commercial name Xalkori – and it’s working again. For various reasons, only one percent of lung cancer patients enroll in clinical trials — I’ve been in two, and without the successful response in the criz trial, and its subsequent FDA approval, I might not be here to write this blog today.
Through all this I have had four biopsies and a bizarre number of CT scans, MRIs, blood tests, eye exams, EKGs, etc. Three trips to the ER, five nights in the hospital over two trips, hundreds of needles, and so on. Not fun, but we are throwing everything we have at this deadly disease.
It’s been a real roller coaster ride, one that we would rather not be on, but you deal with the hand that you’re dealt. We’ve had some great doctors and nurses along the way, first and foremost our Kaiser oncologist Dr. Raymond Liu. He’s the quarterback of the team, and we couldn’t ask for a smarter or more compassionate man to lead us (he went to Harvard, but we have decided not to hold that against him!).
Dr. Raymond Liu, a great guy and a great doctor.
Our oncology nurse at Kaiser, David Sexton, a hardcore road biker, is equally competent and kind — and I have come to trust him with the intricacies of injecting poisonous chemos into me. I don’t know that either of these men read this blog (a doctor/patient barrier that not all health professionals cross, or should) — but thank you.
Another great guy -- our oncology nurse and avid biker, David Sexton.
While we’re ‘rolling the credits’, thanks also to Dr. Jahan (UCSF cancer guru who recommended Dr. Liu), Dr. Heather Wakelee (Stanford lung cancer specialist who ran the criz trial) and her assistant Melanie; Dr. Lecia Sequist (lung cancer specialist at Mass General specializing in new targeted drugs), Dr. Edward Garon (UCLA, AUY922 trial) and his fun staff of Lisa, Heather and Jelani. My radiation oncologist, Dr. William Wara, is also fantastic, as are his ‘bakers’ Nate and Barbette. We also thank Michael Broffman of Pine Street Clinic in San Anselmo, who has provided us with advice on complementary and Chinese therapies which vary depending on which chemo regimen I am on. We’ve dealt with literally hundreds of health care professionals over the last two years, and we are grateful to all of them.
Friends, family and especially my wonderful wife Leslie have also helped us get through this, but there’s no way I could mention everyone. It’s a cliche, but combating this thing truly ‘takes a village’, and I am privileged, proud, and always somewhat amazed to find out how many villagers are out there for us.
Leslie on the Mt. Tam hike -- thanks to Clark Miller for the photo!
Two years — just think of it! Our heartfelt thanks to all.
I am really proud of Leslie for organizing the Free to Breathe® hike on Mt. Tam on Sunday in observance of National Lung Cancer Awareness month. Despite threatening weather, 17 friends met at Rock Springs parking lot on Sunday at 10:30 a.m. to partake in either the 1-mile walk up to Dad O’Rouke’s Bench or the 5-mile hike on Coastal/Laurel Glen/Cataract trails and back to the parking lot. Leslie led the short hike, as she wanted to be in the first wave of hikers back to the house, while Mt. Tam gurus John and Jo Ann Comstock led the longer ramble.
Thanks to Clark for shooting this photo at the beginning of our hike! Click to enlarge.
John shot this photo of the hikers at O'Rourke's Bench before the groups split up. Note all the hiking poles -- they seem to be gaining in popularity as we get older.
Kudos to the irrepressible Charlie Mohn for toughing out the long hike despite his injuries from a bike accident earlier this year — it was the longest he’s walked since then. Don Wieneke got a pair of bad blisters, but toughed it out with a smile. Highlights of the hike included the serpentine power point (from Gary Snyder’s circumnabulation as described in Tamalpias Walking), the acorn grainery tree (Clark photographed five acorn woodpeckers on one branch of a neighboring tree!), O’Rourke’s bench (arguably the best view from the mountain, but everyone has their favorite), the ancient rusted car on Coastal, and the lush hike up Cataract. Apparently it was a moody day — sun/clouds, wind/calm, hot/cold… a real sampler of Mt. Tam in all its glory.
A perfect day for a hike on Mt. Tam!
About 20 friends came by our house afterward for hot chili and adult beverages. Sailing was the common denominator among the crowd, with the Yucca crew well represented (our leader Hank, Charlie, Laurence, Robin), two longtime Latitude friends (John A., Mitch), former Elan owner Bill Riess, Lulu owner and cancer advocate Don Weineke, and Katrina veteran Kevin Riley with wife Carolyn and daughter Jane. Pete McCormick (Morpheus) and his gal-pal made the hike, but had previous plans for the afternoon. We also had two hardcore underwater photographers/world travelers (Clark Miller and wife Audriana) and my two heroes from the Friends of the Mill Valley Library, Joanne Hively and David Robinson. Of course, John and Jo Ann — hikers, kayakers, occasional sailors — were there for us too, as always. It was quite a festive gathering! I’ve been a bit of a hermit lately, so it meant a lot to me to see so many friends under our roof.
Many other people donated to the cause, but couldn’t make it. Our two biggest donors live in New England and are observing the Free to Breathe® national walk week in their own way. Globetrotter Meg Campbell was climbing the Inca Trail up to Machu Picchu and ‘wins’ our humble fundraising effort on all counts! No report yet from Stephen, who hikes the trails from his home in Massachusetts’ Pioneer Valley when he’s not sailing or hanging out on the Vineyard. We hope to have some photos from Meg when she returns, but we did receive some from my sister Marnie and husband Scott who reportedly had a lovely 6+ mile walk around the Blackstone Valley bike path in Rhode Island.
Together we raised somewhere over $2,700, with donations still dribbling in. It’s not too late to make a donation to this worthy organization. Many thanks to everyone who participated in any way!
Switching gears: all is status quo on the medical front. Six down and four to go on the WBR treatment. Not drooling yet, so I assume they haven’t hit anything important as they fry the ‘bad guys’. I’ve barfed a few times and am pretty fatigued, but this too will pass (as will my hair, which is slated to go next week). I am less reliant on the oxygen tank, though it is comforting to know it is there when I need it. Leslie has been bravely injecting me with Lovenox twice a day, which is to combat the blood clots that showed up in my lungs in last week’s CT scan. I am maybe the most needle-phobic person on the planet, and cover my head every time she closes in on me (I have never looked at a needle or an injection in 58 years. It’s irrational, I know, but I just can’t).
We have a meeting with Dr. Liu tomorrow, during which I intend to throw myself at his feet and plead for blood-thinning pills instead of injections. This decision has its pros and cons (pills deliver the dose less reliably, and therefor require frequent blood tests), and must be examined from all sides. We have also been meeting with a Kaiser social worker about end of life issues such as how hospice works, which is really heavy stuff and a little hard on me. But knowledge is power, and Leslie is really good at keeping one step ahead all the time.
On the whole, I feel like I’m rallying a bit thanks to Criz and just need to get through the next few weeks of feeling crappy until the effects of the radiation treatments wear off. I also realize that this is a grace period, that none of these treatments or drugs will beat this horrible disease forever. Rather, you co-exist with it, make peace with it, and try to enjoy every day. Sunday was the best day I’ve had in a long time — thanks, everybody!
We’re both still recovering from yesterday’s bonus trip to the ER. Happily it didn’t require an overnight stay this time! Rob will have his fourth WBR treatment today and will have the weekend off. No sign of hair loss yet, but we know it’s coming (or is that going?).
The technician positions Rob for his WBR treatment.
Thanks to everyone who is joining our Free to Breathe® hike on Sunday, and many thanks to everyone who is supporting us with a donation to the National Lung Cancer Partnership! It’s unfortunate that fall weather patterns are moving into the Bay area — the forecast for Sunday currently shows rain showers in the morning. We’ll hike rain or shine unless it’s too windy. We’re 40% of the way to our fundraising goal of $5000 — and donations can be made until the end of the year. $5000 may seem like a drop in the bucket, but consider that this amount will provide 10% of the yearly funding for a lung cancer researcher – it does make a difference!
And finally, another short video about lung cancer. This one from the physicians at Stanford, including one of Rob’s oncologists, Dr. Heather Wakelee.
How quickly things can change. I started writing this post this morning, intending to finish it this evening. I started the blog with “there’s really nothing much to report.” Ha!
But let me start back at the beginning. This morning Rob had his 6-week CT scan to check on the progress of the crizotinib. Then, in the afternoon he had the third of his ten WBR treatments. He’s doing well so far, with just a little additional fatigue, slight nausea, and headache – all manageable so far. We’re getting into a rhythm with the drive to and from the Kaiser center in South San Francisco. So the day was tiring, and Rob had a couple more needle sticks than he would have liked, but everything was fine. Until 5pm when the phone rang. Caller ID showed that it was someone at Kaiser and I thought perhaps it was Dr. Liu with some good news about the CT scan. Instead, we learned that the CT showed some blood clots in Rob’s lung, and Dr. Liu strongly advised us to go to the ER for some tests (blood, EKG) and an injection of a blood thinner. So, we spent about 2.5 hours at the ER in San Rafael. Dr. Liu had called ahead so the ER doc was prepped. The EKG and blood tests were normal, but Rob had two more needle sticks and was sent home with a prescription for a blood thinner which I will have to inject twice a day. Not fun for either of us!!!
There was some very good news today, although it was a bit obscured for a while — the CT also showed that the cancer in the lung, liver, and lymph nodes has decreased! The criz is doing its biz! We’ll get all the details next week when we have our regularly scheduled visit with Dr. Liu.
Lately, I feel like the scarecrow in The Wizard of Oz — I’m all skin and bones now, and can’t gain weight no matter how much I eat (hovering on either side of 160, but the trend is downward). And last week, we learned that my brain has a few problems. Twelve of them, to be exact.
Last Monday, I had a ‘high-res’ MRI of my head, which takes longer than a normal MRI and involves doubling the contrast juice they inject. Unfortunately, it revealed seven more small lesions in addition to the five they found on the ‘normal’ MRI. With five small spots, I was a candidate for the less-invasive Cyberknife procedure. Twelve tumors is too many for that route; hence, a regimen of whole brain radiation (WBR) is necessary.
Intellectually, I understand that this must be done — the tumors are time-bombs which could trigger strokes, seizures, vision loss, speech impediment, and who knows what else. Emotionally, I am not exactly thrilled by this turn of events, but will do what it takes: ten consecutive weekdays of radiation, beginning on Tuesday (I do get weekends off). We will be doing this treatment at the Kaiser facility in South San Francisco under the wise direction of Dr. William Wara, a 40-year veteran (Professor Emeritus at UCSF) of this stuff and a really nice person. He tells us to expect the usual side effects: fatigue, hair loss, and some memory loss six to twelve months down the road (too bad you can’t select which memories to erase). He also says to stop referring to the treatment as a ‘lobotomy’.
The good news, I suppose, is that this is a one-time deal — the brain ‘mets’ (medical slang for metastases) apparently only need to be fried once, and if any lesions are somehow left after this cranial holocaust, they can Cyberknife them. I also will finally get to wear all the hats I have collected over the years, as I expect to be bald as a cue ball in about two weeks.
On the lung/liver front, I have an all-important CT scan scheduled for Thursday, and will meet Dr. Liu the following Tuesday to hear the verdict. I am coughing less, and less reliant on the oxygen machine, which are hopefully signs that the criz is doing its biz. It worked for 4.5 months the first time I used it, but no one is sure how long — or if — it will work the second time around. Lung cancer is ‘smart’, as opposed to some other cancers, and eventually figures out how to get around criz or anything else you throw at it.
On a more pleasant subject, we just enjoyed a five-day visit from Steve Rubey, my ‘big brother’ from Lopez, and his girlfriend Kathryn. Steve and I have known each other since the Blade Runner days, and we saw each other frequently over the last two years as our yurt is in his meadow… Speaking of yurts, we just got back from a nice picnic with John and Jo Ann at the picnic tables next to the yurt at Slide Ranch, overlooking the ocean. It was shorts and t-shirt weather (be jealous, you East Coasters!) — a beautiful day to be alive.
Just a quick update to let everyone know that Rob got home yesterday at 5 pm, plea-bargaining his way out of the hospital after a three-day incarceration. We came home with an arsenal of antibiotics and a new toy called a ‘nebulizer’, which will be perfect for Halloween. The final diagnosis was severe sepsis/pneumonia, and he’s responding well to the antibiotics which will continue for another few days.
We were both shaken by this whole turn of events, as it was serious enough that who knows what could have happened. When admitted, his blood pressure was ~ 85/50 and declining, which was serious enough to send him to the ICU. In retrospect, even Rob — who protested mightily about going to the ER — admits that it was a good thing that I dragged him there.
Rob has been doing well since getting out, sleeping solidly for 10 hours last night and showing an increased interest in food. His breathing is still labored, and he’s still running a slight fever, but the trend is in the right direction. Hopefully things will be back to the ‘new normal’ — or better — in the next few days.
Breaking news — We just got a phone call from our friends Damon, The Curmudgeon, and Robin on the Swan 53 Katrina, who did a race over to Catalina this afternoon. They dedicated the race to their absent shipmate Rob, which was a really nice thing to do — and they won! Unfortunately, somewhere near the finish line they got a little too close to shore, sailed through a kelp bed, and abruptly smashed a rock while speeding along at 7.5 knots. Everyone except Robin, who was driving and somehow didn’t break the wheel, did cartwheels and most of the crew is bruised in some fashion. Ouch! As we ended the call, the crew was headed for shore in search of liquid medication… There must be a moral to this story, but it escapes us at the moment.
Leslie's Adventures 