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Just a quick note to let everyone know that Rob’s condition is more-or-less stable right now. He continues to rest comfortably, but in his words, he is “cosmically tired”. I haven’t been able to respond to everyone who has written to Rob, but please know that he takes in every word and is overwhelmed (as are Marnie and I) by the stories and sentiments.
One thing that won’t die with Rob is my commitment to erasing the stigma of lung cancer and supporting research for early diagnosis and treatment. So, as 2011 comes to an end, I also want to thank all of you who contributed to our Free to Breathe lung cancer fundraising endeavor. I am happy to report that, through all your generous gifts, we raised $10,000 for the National Lung Cancer Partnership and their efforts to increase awareness and funding for lung cancer. If your New Year’s eve plans include any last minute charitable giving, please consider making a gift in Rob’s honor to this excellent organization.
There haven’t been many photos lately, but I hope you’ll enjoy this collage as much as we have! Thanks Jim!!
From Jim Gregory - fun times with Rob on Morpheus and Agent Smith
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!
