My parents decided to go away for a short getaway this weekend. They recently won a prize for a stay at a nearby hotel and tickets to the musical Mamma Mia! I don't think they are big ABBA fans, but, heck, why not? I'm glad that she's feeling well enough to go away, even if its just a local trip.
I spoke to my mom from Moscow. She had gone through her chemo for the week and had a couple of good days. But she said she's worried about my father. "He doesn't like to show it," she said, "but he's under a lot of stress." She asked me to say a prayer for him.
The New York Times has an article "For the Families of the Dying, Coaching as the Hours Wane". They discuss the details of the hospice movement in the US and how it can help families deal with the impending loss of a loved one. The article also talks about the final hours of a death vigil and the different emotions and dynamics people go through.
But I must admit, this article didn't really appeal to me. It's not something I want to think about right now. But perhaps others will benefit from it.
I'm travelling in Europe on business for just over a week. I'm in Helsinki, Finland and then I'll be in Sweden, Germany and Russia. Honestly, it's not as glamorous as it sounds.
I've been able to call back to my folks to see how my mother is doing. Today she sounded much better than earlier in the week. It was a brief call, but she did not sound as out of breath as she has been previously.
Since overseas cell phone calls are very expensive I've been using a computer service called Skype. Skype has amazing voice quality and it's free for calling from computer to computer and cheap for calling from a computer to a regular land line. (Cheap here means about 2-3 cents per minute, which is 50-100 times cheaper than European hotel or roaming cell phone rates.) You just download the software, register and plug in a headset. It's really easy.
If you want to see what I'm up to in Europe, you can go to Splashblog and see photos from my cell phone, like the airline food I had on my flight from Munich to Helsinki the other day. (Click on the photos to see them full size.)
Happy Birthday, to Mary Urlocker! It's my mom's birthday today, but I won't say how old she is. (Or rather, I won't say how young she is.)
And the good news is, she's out of the hospital. They drained 850 cc of fluid from her left lung, which is also good. Even better, my father found her wedding band. They had lost it two weeks ago when she went into the hospital for surgery. But luckily, my father put on the same pants yesterday and found the ring in his pocket. I told my mom it's a good omen.
I'm in Finland on business and I will try to call her and wish her a happy birthday. I hope you will too.
My father took my mother back into the hospital this morning. She's having trouble breathing again and are planning on draining her lungs and her abdomen tomorrow. Apparently this time, it is her left lung which is having the most trouble. She can't quite get a full, deep breath, and that makes her very anxious. Hopefully she will be in for just two days and then be out in time for her birthday, which is Wednesday May 17.
My brother Michael is in town for a couple of days, so he'll be able to stop by and see how she's doing. Meanwhile, I'm heading out of the country on business for ten days. So it will be a bit tougher to know exactly what's going on.
My wife and I sent my mother four dozen roses for Mother's day. It's a mix of roses of different colors. There are 48 roses to represent the 48 years she has been a mother. And I suppose the thorns represent something in that also.
We spoke to my mother for a few minutes only. She's having trouble breathing again. She did the chemotherapy on Thursday, and the next day was ok, but Saturday and Sunday have been rough. My father thought about bringing her into the hospital, but they decided to wait and see if her breathing improves. It would suck to be in the hospital on Mother's Day.
That made me sad. And then I listened to an Irish song called The Curra Road sung by Jim Fidler, a folks singer from Newfoundland. His music is quite inspiration, but today it didn't help.
I can't find an easy way to play the song, so I have linked to it below on the Podshow network, where Jim Fidler's music is used in Podcasts such as Phedipidations, the show about running. The music and the words are beautiful but haunting. "We won't worry about the Winter, worry 'bout it raining, worry 'bout the snow..."
The Curra Road
Copyright (c) Ger Wolfe 2002In the Summer we'll go walking, way down to the river, down the Curra road. There's the blue sky we'll walk under, listen to the humming bees and on we'll go.
We won't worry about the Winter, worry 'bout it raining, worry 'bout the snow. In the Summer we'll go walking, way down to the river, down the Curra road.Past the cattle at their grazing, through the woods of hazel, holly, birch and oak. Past the robin on the gatepost, singing to the bluebells, sunlight is their host.
We won't worry 'bout the radio, worry 'bout the traffic, worry 'bout the phone. In the Summer we'll go walking way down to the river, down the dusty road.There is music in the river, listen to it dancing, underneath the bridge, and the wind is hardly breathing, words unto the willow branches overhead.
We won't worry 'bout the government, worry 'bout the video, worry 'bout the day. In the Summer we'll go waltzing, hand in hand together, down the dusty way.
If you click on the link to PodShow below you should be able to play the song by clicking on the small arrow below the word "Listen."
Over Christmas, I encouraged my mother to try medical marijuana as a way to deal with nausea and discomfort from chemotherapy. Studies have shown conclusively that marijuana has been effective in increasing appetite, combatting nausea and improving the well-being of patients. It's hard not to write about marijuana without getting into the politics of the situation. While I am no expert, it appears that the laws in the US have been driven without regard for the benefits of medical marijuana in treating terminal diseases such as cancer.
Since medical marijuana is not technically available in Florida, there were a few challenges along the way. Not only is marijuana illegal, but if you're seventy-three, it's just not that easy to come by. There are no medical marijuana distribution centers in Florida, no compassion centers, no network that we knew of. Unlike say, Colorado, where pot is easily acquired by patients , Florida laws are tough and posession of 20 g (less than an ounce) is a felony, so it is very hard for a stranger to buy pot there. But a friend of my mother's had offered her marijuana a couple of years earlier when she was previously going through chemotherapy. I told my mother, "if she offers again, take her up on it."
My mother was initally uncomfortable with the idea of smoking marijuana, but the side-effects of her anti-nausea medicine were sometimes severe and conventional treatment wasn't working. She had qualms about using an illegal drug, but my parents read a study by Safe Access Now and we read up on some sites by some local activists. We also spoke to some doctors and none said it would be a bad idea. She tried it and it relieved pain and it helped stimulate appetite.
Later in January, doctors gave her a prescription for Marinol, a synthetic form of THC, one of the ingredients in marijuana. Marinol is more expensive than marijuana, at about $900 a month and unfortunately less effective. My mother said the Marinol was helpful for a few days. Shortly after, it seemed less effective than smoking pot, she said. Compared to natural marijuana, its psychoactive effects are sometimes overwhelming. Once my mother started with the hospice program in late January, they refused to cover the expense of Marinol, so my parents gave up on it, and used medical marijuana instead.
Through friends of friends, cryptic conversations and stealth package drops from unidentified sources, my mother was able to get a small but steady supply of marijuana. She had smoked cigarettes for many years, so she was able to take a couple of puffs once in a while as required. I don't think she ever got "high" from it --she never had cravings for Cherry Garcia ice cream --but it worked better than any of the prescription drugs at relieving nausea and pain. She said it was a god send. We teased her about smoking pot and got her a tie-dye t-shirt and an ash tray with the "Flying Nun" picture by Santa Cruz artist Janet Ellinger, shown above.
Thank you for all those anonymous people who helped out with this project. You made my mother's final months more bearable.
Think what you will about whether marijuana should be legalized or whether it's better or worse for society than alcohol or tobacco. But for medical purposes I defy anyone to look a cancer patient undergoing chemotherapy in the eye and deny them access to the one drug that is proven to help them. For those seeking more information, I have listed several links below which may be helpful.
Note:
I chose not to write about my mother's use of medical marijuana until after she died. I asked her on one of my visits if she was ok with me writing about it and she agreed.
I spoke to my mother a couple of times this week. She sounded better tonight than she had the last couple of times. She had more strength in her voice and seemed to be doing well. My parents were weighing whether to start the new chemotherapy treatment this week. My mother was still recovering from her recent surgery, but she said if she felt well enough on Thursday, she'd go for it.
She said she doesn't always like to be realistic about things, but as she put it, she's choosing life. It sounds pretty grim if you think about it that way, but it is the reality of the situation. It's either chemotherapy to extend her life or...
Or what? I guess you just have to have faith. I'm not particularly religious, but I do have faith and I hope that whatever power there is in prayer or positive thinking or alternative medicine or a greater power can have some impact. Because there doesn't appear to be too many options at this point.
The graphic above is a painting by a Santa Cruz artist Janet Allinger that my wife bought. The name of the painting is "Our Lady of the Immaculate Consumption" and yes, that's a pint of Guinness she's holding. I thought it was quite irreverant and I suppose it reminded us both of my mother. She always used to have stories of the nuns who taught her in nursing school.
Today I learned of a web site called www.janesappeal.com, a site developed by breast cancer survivor Jane Tomlinson. Tomlinson, a mother of three from England, was diagnosed with terminal cancer in 2000 and given only 6 months to live. She has proven the doctors wrong by a wide margin, and has gone on to complete the IronMan Triathlon in Hawaii, three London Marathons, the New York Marathon, several Triathlons and two long distance bike rides across England, raising more than $2 million for charities.
She is now starting a new campaign to ride across America, which at 4,200 miles, appears to be the greatest endurance feat attempted by someone with terminal cancer.
Thanks to Steve Runner for pointing out Jane's Appeal on his Podcast, Phedipidations. Steve also mentioned this blog and my mother on his Podcast #43 at around 34:40 into the story.
