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“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!
The latest chapter in our ongoing medical drama started off poorly, but actually didn’t end that badly — kind of a wash, actually. Just after we celebrated the two-year mark, we got thrown another curve ball in the form of pain in Rob’s left leg and now-pathetically skinny (his words) left butt bone. The pain increased dramatically over the weekend, until it was excruciating on Monday morning — bad enough that he passed out three times. The third time was in my arms as I tried to get him to the car for our last trip to the Brain Bakery.
After consulting with Dr. Liu, an AMR transport ambulance took Rob to the Kaiser SF-ER at a leisurely pace (no lights or sirens, thank goodness). Naturally, Rob protested the whole way. We’ve seemingly become regulars over there, and were greeted by our favorite nurse from our last visit! Drawing blood and inserting IVs has become a challenge after all the chemo treatments — it took three attempts to finally get an IV started, get blood drawn and provide some strong IV pain juice. As the ER doc told us, when you’re a cancer patient and you come into the ER with severe pain, the first thing they think of is that the cancer is the cause (in the same way that someone with chest pains is worked up as a potential heart attack). Had it not been for the cancer, they would have suspected sciatica of some kind. They did an MRI on his spine, which showed one suspicious spot, so they ordered another MRI to look at the lower spine and pelvis. Three hours later, when the tests were completed, the nurse took the IV out rather quickly and blood geysered everywhere, hammering Rob’s pants and their rug (evidently they weren’t aware that Rob is on blood-thinners). Nearly eight hours later, we returned home, where we both spent a restless night wondering if the cancer had spread to the bones/spine.
Thankfully, Dr. Liu squeezed us in during his lunch hour yesterday, and told us that the results of the MRI really didn’t show any evidence of cancer. Just to be sure, he ordered a bone scan, so Rob went to the hospital two blocks away and got injected with the radioactive tracer that is absorbed by the bones over the course of a few hours. (The scan then measures the uptake of the tracer into the bones which can indicate areas of cancer.) After the injection, it was off to South San Francisco for Rob’s tenth and final WBR treatment and a meeting with Dr. Wara. Rob was even given a graduation diploma, and naturally we gave them baked goods in return! Then it was back to the hospital for the bone scan, which we learned this morning didn’t show cancer. Finally, a break!
Rob's diploma.
So where are we? Rob is shedding his once-reddish locks rapidly, and you could have knitted a sweater for a small animal (a woodchuck?) from what was on his pillow this morning. He is so far resisting the imminent buzz cut, but it’s getting so gross that he is now waffling on the subject, which will surely involve a Mohawk Moment….
Our cat isn't the only one who's shedding these days.
The pain in his left leg and butt-bone is related to his back somehow, and hopefully will go away through rest and gentle exercise / physical therapy. The pain killers are keeping him comfortable, but are only masking the problem and not fixing it. The fatigue from the WBR regimen hasn’t been too bad, and should go away in the next couple of weeks, so he should be more lively soon. Rob’s appetite is back to normal and he is gaining weight, another very good sign, but he needs to start building some muscle tone again. The cough is all but gone, except late at night if he has been talking too much. We are getting improbably good at the daily Lovenox injections – but neither of us likes them. All in all, we think we are on the comeback trail.
On a happier note, we enjoyed a great visit last Sunday from two of three of Rob’s Minnesota first cousins on the Moore side of his family. John and Jen, who moved from Denver to San Francisco last year, and Dave and Cathy, from Minneapolis, came over and we had a grand time catching up. Rob hardly knows this half of his small family, but is really happy to like them all so much. They have a lot in common — love of the outdoors and libraries come immediately to mind. We are working on a theory that Minnesota produces some of the nicest, most normal people around — any input?
The Moores--Rob, Dave, Cathy, Jen, and Jon.
Finally, we were stunned, amazed, thrilled, overjoyed, gratified (you get the idea!) to receive a huge donation in the name of the VAHC (Vernal-Almonte Hiking Club) for the National Lung Cancer Partnership. The donors — people Rob has known for a long time — have requested to remain anonymous, but we can’t resist pointing out that they way more than doubled what we had already raised. Thank you, dear friends!
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.
