When my favorite Thai restaurant closed a few years ago, I searched in vain for a crab fried rice that was good as Nana's. Turns out I didn't have to go far to find it.
Go to Open Mouth, Insert Fork to learn how to make Thai crab fried rice - a dish where the crisp flavors of fish sauce, lime juice and ginger complement the subtlety of the crab.
Wednesday, June 30, 2010
Feeling Tired and Agitated
Yesterday I was a tired puppy. I thought I slept well thru the night but got up feeling tired and agitated. I had breakfast and then laid down for what turned out to be a two hour snooze. Still feeling out of sorts, I decided to get out of the house and shop to burn off some steam.
Well that didn’t really help either as I just got more tired and grumpy as the day wore on. After supper, I ended up taking half an Ativan and hit the pillow just before 8.
This morning I’m up and feeling pretty good. I’m not agitated and that’s great because I have afternoon coffee lined up with the Sears group gals and supper with some friends I used to work with.
Doxil day 3
Although I really overdid it yesterday, I am satisfied with the way I feel so far on Doxil. The Emend has successfully prevented any nausea. (I took the last pill today.) I'm experiencing a little tingling in my right palm, a possible early warning of hand-foot syndrome, and have called the naturopath to ask about taking vitamin B6 pyridoxine to treat and/or prevent this from worsening. I am a touch paranoid about getting hand-foot syndrome in my left arm due to the potential impact on my lymphedema.
The orthopedist said yesterday that I had increased extension in my left arm from 50 degrees to 35 degrees, a significant improvement. We don't know if this is due to sleeping with the plastic brace gizmo for the past three weeks; NOT wearing it on Monday night with the lymphedema bandaging as part of hand-foot syndrome prevention; or the 8 mg of Decadron steroids I received on Monday as a chemo pre-med. Evidently steroids have some positive affect on joint issues. At any rate, Dr W is allowing me to stay out of the brace for two weeks to see if I continue to improve.
I wish I could say I slept better without it, but at least I wasn't forced by the gizmo to extend my arm as straight as possible all night long. I still awoke several times with severe hot flashes, the kind that leave sweat standing on my head and neck. And having Bobka's furry dog butt pressed up against my back may not have helped. But he is so cuddly.
The orthopedist said yesterday that I had increased extension in my left arm from 50 degrees to 35 degrees, a significant improvement. We don't know if this is due to sleeping with the plastic brace gizmo for the past three weeks; NOT wearing it on Monday night with the lymphedema bandaging as part of hand-foot syndrome prevention; or the 8 mg of Decadron steroids I received on Monday as a chemo pre-med. Evidently steroids have some positive affect on joint issues. At any rate, Dr W is allowing me to stay out of the brace for two weeks to see if I continue to improve.
I wish I could say I slept better without it, but at least I wasn't forced by the gizmo to extend my arm as straight as possible all night long. I still awoke several times with severe hot flashes, the kind that leave sweat standing on my head and neck. And having Bobka's furry dog butt pressed up against my back may not have helped. But he is so cuddly.
Tuesday, June 29, 2010
Advocating for Yourself
One of the most important lessons I've learned being diagnosed with a rare cancer is that it is really important to be your own advocate. It is important to research and learn about your disease (as difficult as it may be to find information) and to seek out those physicians and oncologists who have treated many cases of your particular cancer. Many good oncologists and physicians may not have experience with rare cancers.
I have been in touch with 700 patients diagnosed with appendix cancer and am all to familiar with cases of misdiagnosis (one woman was treated for ovarian cancer for 5 years before she was correctly diagnosed with appendiceal cancer- she lost her battle). I have also communicated with many who received incorrect treatment initially and only sought treatment with rare cancer specialists when their cancer recurred, often in advanced stages; by then their choices were more limited than if they had sought specialized care initially.
One good resource is NORD, the National Organization for Rare Disorders, though that list of rare diseases is not complete (appendix cancer is not listed there, though Pseudomyxoma Peritonei (PMP), a syndrome caused by mucinous appendix cancers is listed). Other good web sources are the National Cancer Institute or National Institutes of Health.
Many rare cancers also have on-line forums, and while you need to be cautious of the information posted on these boards, often you can find good information about disease treatment and specialists from patients who share your diagnosis.
The best thing you can do is to arm yourself with good information and to compile a written list of questions to ask physicians when you seek opinions for treatment; often it is good to get more than one opinion on treatment protocols. You can self-refer for a second opinion, the request for a referral to a specialist does not always have to be made by your attending physician.
In my case, I sought three opinions before agreeing to treatment, and though it delayed my treatment for a month and a half, it was a good thing, as I in the end treated correctly for my disease. A great article to read about experiences others have had when diagnosed with a rare cancer is Cure Magazine's Rare Cancer Survey, published in April of 2009. Being aware of the pitfalls others have faced may help you avoid your own as you seek treatment for your rare cancer.
I have been in touch with 700 patients diagnosed with appendix cancer and am all to familiar with cases of misdiagnosis (one woman was treated for ovarian cancer for 5 years before she was correctly diagnosed with appendiceal cancer- she lost her battle). I have also communicated with many who received incorrect treatment initially and only sought treatment with rare cancer specialists when their cancer recurred, often in advanced stages; by then their choices were more limited than if they had sought specialized care initially.
One good resource is NORD, the National Organization for Rare Disorders, though that list of rare diseases is not complete (appendix cancer is not listed there, though Pseudomyxoma Peritonei (PMP), a syndrome caused by mucinous appendix cancers is listed). Other good web sources are the National Cancer Institute or National Institutes of Health.
Many rare cancers also have on-line forums, and while you need to be cautious of the information posted on these boards, often you can find good information about disease treatment and specialists from patients who share your diagnosis.
The best thing you can do is to arm yourself with good information and to compile a written list of questions to ask physicians when you seek opinions for treatment; often it is good to get more than one opinion on treatment protocols. You can self-refer for a second opinion, the request for a referral to a specialist does not always have to be made by your attending physician.
In my case, I sought three opinions before agreeing to treatment, and though it delayed my treatment for a month and a half, it was a good thing, as I in the end treated correctly for my disease. A great article to read about experiences others have had when diagnosed with a rare cancer is Cure Magazine's Rare Cancer Survey, published in April of 2009. Being aware of the pitfalls others have faced may help you avoid your own as you seek treatment for your rare cancer.
PICC Line Covers R - us
I just got back from having coffee with RJ, one of my knitting group buddies. She is an amazing knitter and whipped up this PICC line cover for me. Not only does it look great but if fits real good too.
RJ is going to send me the pattern that she created just in her head. And I’m going to go out and get one more set of circular knitting needles to see if I can whip up something similar. I’ve been trying different sizes of knitting needles and different types of yarn and still haven’t come up with something that works for me. I guess I just don’t have that creative gene. Somehow making these PICC line covers has become more of a challenge for me now. More than anything, I’m going to make one that looks and feels good too … and that’s final.
The morning after
Either my anti-depressants have really kicked in, or I am still getting benefit from yesterday's steroids, because I slept well all night (except for three hot flashes that were borderline night sweats at 2 AM, 5 AM and 7 AM).
I have no nausea this morning; took my second of three Emend tablets and they seem to be doing the job. I even asked Dr G to give his hopefully positive opinion on taking our planned beach vacation, if I continue to feel well.
I feel back to my normal routine today. Walked the dog (sigh... only one dog), hope to be able to see the orthopedist, meet with an estate planning attorney, and attend an afternoon meeting. That would be a lot for me on a regular day, much less the day after chemo.
Even my left arm feels more extended after NOT sleeping in the black plastic orthopedic gizmo. We'll see what the orthopod says about that. Remember, I'm not bandaging for three nights to prevent hand-foot syndrome from starting.
Say it with me. Doxil will be::
I have no nausea this morning; took my second of three Emend tablets and they seem to be doing the job. I even asked Dr G to give his hopefully positive opinion on taking our planned beach vacation, if I continue to feel well.
I feel back to my normal routine today. Walked the dog (sigh... only one dog), hope to be able to see the orthopedist, meet with an estate planning attorney, and attend an afternoon meeting. That would be a lot for me on a regular day, much less the day after chemo.
Even my left arm feels more extended after NOT sleeping in the black plastic orthopedic gizmo. We'll see what the orthopod says about that. Remember, I'm not bandaging for three nights to prevent hand-foot syndrome from starting.
Say it with me. Doxil will be::
Very effective
Manageable side effects
Well-tolerated
Monday, June 28, 2010
First Doxil
Today I received my first treatment of Doxil (doxorubicin). First they gave me a new anti-nausea drug called Emend (given by IV), then i took Decadron (a steroid) and Ativan (for anxiety) orally. Then they finally set up the Doxil. Two chemo nurses sat with me to monitor how well I reacted and to make sure there were no problems. They gave it very slowly at first, then began increasing the speed. It took about 90 minutes - two hours for the whole infusion.
Doxil is a bright peach color, or as one nurse put it, exactly the shade of peach Jello. I don't eat too much Jello but I liked her softer imagery.
I felt quite chatty, especially compared with my morose behavior of the past few days. Either the Zoloft (anti-depressant( is kicking in quickly, or the steroids gave me just enough lift. D and C came to visit and I was able to have good interactive conversations with them both. D called me "perky." Either way, I rose to the occasion and provided the nurses with information they needed.
One bit was about the interaction of lymphedema with hand-foot syndrome. Evidently, if you get this, it comes on for a few days immediately after treatment and then eases. You can help prevent it by taking tepid showers; not using knives or tools; not kneeling or leaning on your arms. So far none of the providers recalls treating anyone with hand-foot syndrome who also has lymphedema. I have left a message with my physical therapist asking about her experience and I'm sure she will call back if she has a solution to offer.
Meanwhile we have decided that for these first three or so days post-Doxil, I will cease all lymphedema management to avoid putting undue pressure on my palms, and then return to night-time bandaging more loosely (if I can do this). At least I have a plan.
We came home with two prescriptions: Emend is given via IV on treatment day, and then via oral pill on each of the next two days. I have oral Zofran to manage additional nausea, should I experience any. And despite his not wanting to order me additional Ativan last week, Dr G wrote a new scrip for Ativan today, so I am covered for both anxiety and nausea.
It all went very smoothly. I was surprised that my counts were high enough to permit starting this treatment, but Dr G thinks it's best to start asap and he's the boss of my cancer. And last Thursday he said in plain words, "Your cancer is going to get better."
Doxil is a bright peach color, or as one nurse put it, exactly the shade of peach Jello. I don't eat too much Jello but I liked her softer imagery.
I felt quite chatty, especially compared with my morose behavior of the past few days. Either the Zoloft (anti-depressant( is kicking in quickly, or the steroids gave me just enough lift. D and C came to visit and I was able to have good interactive conversations with them both. D called me "perky." Either way, I rose to the occasion and provided the nurses with information they needed.
One bit was about the interaction of lymphedema with hand-foot syndrome. Evidently, if you get this, it comes on for a few days immediately after treatment and then eases. You can help prevent it by taking tepid showers; not using knives or tools; not kneeling or leaning on your arms. So far none of the providers recalls treating anyone with hand-foot syndrome who also has lymphedema. I have left a message with my physical therapist asking about her experience and I'm sure she will call back if she has a solution to offer.
Meanwhile we have decided that for these first three or so days post-Doxil, I will cease all lymphedema management to avoid putting undue pressure on my palms, and then return to night-time bandaging more loosely (if I can do this). At least I have a plan.
We came home with two prescriptions: Emend is given via IV on treatment day, and then via oral pill on each of the next two days. I have oral Zofran to manage additional nausea, should I experience any. And despite his not wanting to order me additional Ativan last week, Dr G wrote a new scrip for Ativan today, so I am covered for both anxiety and nausea.
It all went very smoothly. I was surprised that my counts were high enough to permit starting this treatment, but Dr G thinks it's best to start asap and he's the boss of my cancer. And last Thursday he said in plain words, "Your cancer is going to get better."
An Inspiring Cancer Video
My friend Hans from theBluesman sent me this very inspiring 16 minute video.
As taken off the TED website …
As taken off the TED website …
Renowned classical Indian dancer Ananda Shankar Jayant was diagnosed with cancer in 2008. She tells her personal story of not only facing the disease but dancing through it, and gives a performance revealing the metaphor of strength that helped her do it.
Sunday, June 27, 2010
PICC Line Stuff
Friday I was at the clinic getting my PICC line redressed … it’s a weekly event. It‘s been a while since I had seen this particular nurse. She asked how I was doing. I went over my particular situation, reminding her I was stage 4. Oh she says, I probably knew that at one time but forgot.
She cleaned up the skin around my PICC. For a while now, I have had a scab forming around the line itself. Every nurse I’ve talked to says the same thing; we won’t pick on the scab. If it happens to fall off while we’re cleaning it then that is ok. Otherwise we’ll wait for it to come off on its own.
Tho I’ve knitted a few well-fitting PICC line covers, I prefer to cover my PICC line with something called Coban wrap. It can be bought at medical supply stores or at veterinary supply stores. If price is a concern, the vet stores offer it for a much better price than the medical supply stores.
I prefer the skin tone color as it helps camouflages it well … but if you prefer a bit of color … Coban comes in many bright and exciting colors. The best part is that this stuff does not move at all. It grippes the PICC gently and stays put for a week at a time …and I like that a lot.
Saturday, June 26, 2010
American Cancer Society - Choose You
The American Cancer Society is launching a new nationwide movement that shines the spotlight on a sobering statistic: one in three women will get cancer in her lifetime. Choose You is a unique new initiative designed to inspire women to take control of their lives and put their health first to stay well and help prevent cancer. For more information about the Choose You movement, log on to ChooseYou.com.
CSC news update 2010-06-26
For links to recent news items about CSC, visit this [Topsy] page. An example of a news item that has received attention in the past week:
Max Wicha: Breast cancer stem cells (4 min video) http://bit.ly/bhoNWn (via @cells_nnm). Hashtag: #cancerSC.
On glioma recurrence and CSCs
Decreasing glioma recurrence through adjuvant cancer stem cell inhibition by Josh Neman and Rahul Jandial, Biologics: Targets & Therapy 2010(Jun 19); 4: 157-62 [OA review][FriendFeed entry]. Abstract:
Gliomas remain one of the most challenging solid organ tumors to treat and are marked clinically by invariable recurrence despite multimodal intervention (surgery, chemotherapy, radiation). This recurrence perhaps, is as a consequence of the failure to eradicate a tumor cell subpopulation, termed cancer stem cells. Isolating, characterizing, and understanding these tumor-initiating cells through cellular and molecular markers, along with genetic and epigenetic understanding will allow for selective targeting through therapeutic agents and holds promise for decreasing glioma recurrence.
Friday, June 25, 2010
Help for depression
Today I was diagnosed with moderately severe depression and I start sertraline (Zoloft), an anti-depressant tomorrow morning. I also had an echocardiogram to discover if my heart is healthy enough to tolerate the Doxil.
I realized how fortunate I have been to have bone-only disease for the past seven and a half years which responded well to aromatase inhibitors and other anti-estrogenic, oral meds. How quickly I forgot that I felt well most of that time. (Aside from the pain of a broken leg, new bone mets, back pain...)
Chemo freaks me out and yet I read every day that so many of my mets-sisters manage to live well on it long term. Still, having Abraxane fail after only two months scares me.
This evening I suddenly realized that I have dealt with cancer for 20% of my life -- 11 years. I barely remember the other 80%: it flew by when I wasn't paying attention. Or maybe that's the depression talking.
I realized how fortunate I have been to have bone-only disease for the past seven and a half years which responded well to aromatase inhibitors and other anti-estrogenic, oral meds. How quickly I forgot that I felt well most of that time. (Aside from the pain of a broken leg, new bone mets, back pain...)
Chemo freaks me out and yet I read every day that so many of my mets-sisters manage to live well on it long term. Still, having Abraxane fail after only two months scares me.
This evening I suddenly realized that I have dealt with cancer for 20% of my life -- 11 years. I barely remember the other 80%: it flew by when I wasn't paying attention. Or maybe that's the depression talking.
Healthy Spirits: Beer of the Month Club July 2010
...is ready for pick-up!
cheers,
dave hauslein
beer manager
415-255-0610
Fatigue Setting In
After 20 treatments of Taxotere, I thought Xeloda was a holiday. My energy level was coming back. I was feeling stronger both mentally and physically and that made for a pretty good quality of life. It kinda felt like I was accelerating.
Now that I’m finishing my second cycle of Vinorelbine I’m being reminded of some of the fatigue I experienced with Taxotere. I am starting to feel tired all the time. I am losing some of my enthusiasm to do stuff. Everything requires a bit more effort these days. I just want to constantly go for a nap.
Mentally, the fatigue is a challenge; I can’t stay on top of anything. I’m feeling a bit melancholy. And this is only cycle two of Vinorelbine. I’ve got mixed emotions, if it works and the shrinks my tumors I’ll be extremely happy … but on the other hand, I won’t be happy with just the fatigue.
Thursday, June 24, 2010
Liver lesions
Yesterday's CT scan revealed seven liver lesions which did not appear on the last scans in 2008. We have no way of knowing how recently they appeared. I have no symptoms, but these are the first active soft-tissue mets since one lung met at time of diagnosis in 2002.
The plan is for me to switch to Doxil, scheduled for Monday. It can be hard on the heart, so I am having an echocardiogram on Friday. Usual side effects of hair loss, nausea, low blood counts, etc. plus a risk of hand-foot syndrome. I immediately worried about the impact on my lymphedema. Both Dr G and Dr B basically said we'll deal with that if it comes up. I should get Doxil every 21 days. It is both more powerful and more toxic than Abraxane.
After finishing with Dr G the oncologist I saw Dr Bufi the naturopath, who came up with a plan for keeping me healthy while on Doxil.
Dr G made a joke: "Sometimes the first boyfriend (meaning Abraxane) just isn't the right one." We laughed out loud. Who among us had the right first boyfriend?
I coped as long as I could and got into bed for a few hours, then ate a bowl of cereal. (I wasn't hungry all day long.)
Say the medication mantra with me (note the new prioritization and phrasing):
The plan is for me to switch to Doxil, scheduled for Monday. It can be hard on the heart, so I am having an echocardiogram on Friday. Usual side effects of hair loss, nausea, low blood counts, etc. plus a risk of hand-foot syndrome. I immediately worried about the impact on my lymphedema. Both Dr G and Dr B basically said we'll deal with that if it comes up. I should get Doxil every 21 days. It is both more powerful and more toxic than Abraxane.
After finishing with Dr G the oncologist I saw Dr Bufi the naturopath, who came up with a plan for keeping me healthy while on Doxil.
Dr G made a joke: "Sometimes the first boyfriend (meaning Abraxane) just isn't the right one." We laughed out loud. Who among us had the right first boyfriend?
I coped as long as I could and got into bed for a few hours, then ate a bowl of cereal. (I wasn't hungry all day long.)
Say the medication mantra with me (note the new prioritization and phrasing):
Very effective
Well-tolerated
Manageable side effects
Boston Med (TV show)
I like this show Boston Med. I get to see my old stomping grounds from my days living in New England. I also got to view some of a lung transplant which was interesting, and hits home as I am eternally grateful for the gift my donor and his family gave to me and mine as I am still hear trying to do the right thing. Anyway like the show....or at least I like it so far.
Cancer in 2030
Reuters reports ...
U.N. report: 13 million around world will die each year, twice those in 2008
U.N. report: 13 million around world will die each year, twice those in 2008
LONDON - Cancer will kill more than 13.2 million people a year by 2030, almost double the number who died from the disease in 2008, the United Nations' cancer research agency said on Tuesday.
The International Agency for Research on Cancer (IARC) also said that almost 21.4 million new cases of the disease will be diagnosed annually in 2030.
Launching a new database on global incidence of cancer in 2008, the latest year for which figures are available, the IARC said the burden of cancer was shifting from wealthier to poorer nations.
For the complete story ... follow this link ... http://www.msnbc.msn.com/id/37451524/#storyContinued
For the complete story ... follow this link ... http://www.msnbc.msn.com/id/37451524/#storyContinued
Depression update
Although I am still as deeply depressed, I have taken some steps in both directions (including some back into bed).
I contacted my former shrink, who called me immediately and offered to speak with Dr G about anti-depressants. I guess I will hear the results when I see him today and find out about yesterday's scan.
The CT scan required me to drink a bottle of barium solution, then get my port accessed, then drink another bottle of barium solution. Sometime in the midst of being accessed, I vomited up a portion of the barium. The taste was awful, my stress level is sky-high, I had a hot flash and the nurse couldn't quite get the needle in the right place in the port. POOF -- vomit. The nurse then walked me back to the radiology department and confirmed for them that I had indeed vomited and should not drink the second bottle of barium.
From there the scan went smoothly and was over quickly. I asked for a place to lie down for a few minutes and was given a pillow and blanket to soothe me. I practiced my yoga breathing for a while and then was able to meet a friend for lunch.
Lunch was just the opposite of what Dr G has requested in terms of low carb diet. I wanted something gentle on my upset tummy and what could be more bland than noodles with alfredo sauce? I wasn't hungry but forced myself to eat anyway. L and I took a short walk in the sunshine and I went home to crash.
I tried to contact Pacificare Mental Health and get a referral to a psychiatrist who specializes in chronic illness, but was again thwarted. There is only one such doctor contracted in the entire city of Seattle. The one who didn't return my call from Monday. The Pacificare "care advocate" offered me an appointment with someone in Bellevue, but I explained that I have so many medical appointments already, I didn't have the time or energy to drive to Bellevue once a week.
As soon as possible, I wrapped my arm, put on the plastic orthopedic gizmo, took a milligram of Ativan, got undressed and into bed. I got up occasionally, once to take a call from my primary care doc. She insisted that I call her office today and get in to see one of her colleagues while she is on vacation. So on Friday I have rearranged my schedule to see yet another doctor who can hopefully assess my situation properly and begin prescribing me the right medication to treat this depression.
I also contacted my naturopath to get his take on this situation. A friend from my online support group mentioned that when you wear fabric (scarves, hats) over your bald head, you prevent any UV light from reaching your pineal gland. I must ask him about this.
So far it's not affecting me to eat only two meals a day. Skipping dinner three days in a row has not impacted my weight or made me particularly hungry in the morning. I will eat because I know I have to, not because I want food.
I contacted my former shrink, who called me immediately and offered to speak with Dr G about anti-depressants. I guess I will hear the results when I see him today and find out about yesterday's scan.
The CT scan required me to drink a bottle of barium solution, then get my port accessed, then drink another bottle of barium solution. Sometime in the midst of being accessed, I vomited up a portion of the barium. The taste was awful, my stress level is sky-high, I had a hot flash and the nurse couldn't quite get the needle in the right place in the port. POOF -- vomit. The nurse then walked me back to the radiology department and confirmed for them that I had indeed vomited and should not drink the second bottle of barium.
From there the scan went smoothly and was over quickly. I asked for a place to lie down for a few minutes and was given a pillow and blanket to soothe me. I practiced my yoga breathing for a while and then was able to meet a friend for lunch.
Lunch was just the opposite of what Dr G has requested in terms of low carb diet. I wanted something gentle on my upset tummy and what could be more bland than noodles with alfredo sauce? I wasn't hungry but forced myself to eat anyway. L and I took a short walk in the sunshine and I went home to crash.
I tried to contact Pacificare Mental Health and get a referral to a psychiatrist who specializes in chronic illness, but was again thwarted. There is only one such doctor contracted in the entire city of Seattle. The one who didn't return my call from Monday. The Pacificare "care advocate" offered me an appointment with someone in Bellevue, but I explained that I have so many medical appointments already, I didn't have the time or energy to drive to Bellevue once a week.
As soon as possible, I wrapped my arm, put on the plastic orthopedic gizmo, took a milligram of Ativan, got undressed and into bed. I got up occasionally, once to take a call from my primary care doc. She insisted that I call her office today and get in to see one of her colleagues while she is on vacation. So on Friday I have rearranged my schedule to see yet another doctor who can hopefully assess my situation properly and begin prescribing me the right medication to treat this depression.
I also contacted my naturopath to get his take on this situation. A friend from my online support group mentioned that when you wear fabric (scarves, hats) over your bald head, you prevent any UV light from reaching your pineal gland. I must ask him about this.
So far it's not affecting me to eat only two meals a day. Skipping dinner three days in a row has not impacted my weight or made me particularly hungry in the morning. I will eat because I know I have to, not because I want food.
Wednesday, June 23, 2010
This and That
Yesterday was a busy day. I visited C from the Second Cup Coffee group. She hasn’t been well enough to join us so lately and I thought I’d stop by her place and visit. She has a lovely back yard on a ravine. There we had tea and cookies and enjoyed all the birds using the bird bath. Hope you can soon join us at Second Cup C.
Then I spent the remainder of the day with family. My sister is visiting from the States and my niece and nephew and their newest little one are in from BC. Wow the family sure is getting big.
It must have been a bit too exciting of day for me because my sleep last night wasn’t great. I woke up numerous times. I had some breakfast and watched a bit of TV and still felt ‘grumpy’.
So I decided to take a couple of Tylenol and hopped back in bed. Two hours later, I woke up feeling so much better; I can’t even tell ya. Then D was staring at the ceiling and said, “That’s good you had a great sleep because you were snoring so loud, I thought I’d find cracks in the ceiling.” Too Funny!
Anyways, I’m feeling good and ready to face the day.
Tuesday, June 22, 2010
A Trio of Good News
My PT scans were clean.
My EOS are under control.
I got to hang out with my friend Nancy, who also had appointments at City of Hope.
My EOS are under control.
I got to hang out with my friend Nancy, who also had appointments at City of Hope.
The Bruery's COTON: Please Read Carefully
The Bruery's COTON has arrived. Due to limited quantities, bottle sales will be limited to 1 per customer.
BEER OF THE MONTH CLUB members may call to reserve their bottle.
For everyone else, get it while you can!
Cheers!
dave hauslein
beer manager
415-255-0610
What's new
I was reminded today by a good friend that I haven't posted here in a few days. Things are generally okay but when piled together, I find I am in need of professional support.
1. Treatment with Abraxane continues to be very tolerable with minimal side effects. I have a CT scan tomorrow (and get the results on Thursday) which should indicate any response so far. Dr. G's plan is to treat me until he sees a response, then add two more months. I think that puts us at re-scanning in three months, getting the hoped-for response, and maybe ending treatment in November. You can see how so many months of chemo appears daunting to me.
2. Lymphedema continues to bug me in the same way -- too much edema in the hand, which is exacerbated by wearing the sleeve and glove. I've been taking a psychological break by not wearing anything during the day, and wrapping at night. This has gone on for about a week. I was measured for new custom sleeves last week. This new brand is supposed to be worn with a glove of the same brand; together they presumably put less compression on the wrist. A regular sleeve and glove, when worn together as appropriate, put MORE pressure on the wrist, thus giving the potential to increase edema in the hand by forcing more fluid there. More stress from this.
3. The left elbow continues to be stuck at about 40 degrees of extension. Even after wearing the black plastic brace every night for two weeks, over my lymphedema bandaging, I still have only 40 degrees of extension. My therapist worked with me to position the brace in a more effective spot on my arm, which may result in additional extension. Or not. I see the orthopedist next week. I do not sleep well at night while I wear this gizmo and yet it seems to be the only thing that will return full extension to my elbow joint. Again, more stress.
4. Pumpkin's death continues to hit both of us hard. He pops into mind at odd moments. It's hard to close my eyes and not visualize him looking back over his shoulder to see where I am. Having Bobka helps a lot but still...
5. Eating the low carb/low sugar diet that Dr. G recommended is very fatiguing. I am tired of having to think about every bite, having to plan my carbs each day. Yesterday after my low carb breakfast of cottage cheese, fruit and a latte, I was hungry again at 10 AM. A coffee and half a piroshky helped, as did the (rather dry) tuna sandwich later supplied by the Cancer Institute. I didn't eat dinner last night (read on). Today I ate bread at breakfast, which pretty much consumes my carbs for the rest of the day. But at least I felt full.
I feel so overwhelmed by all that I am managing that last week I decided to seek professional help. I had lined up an appointment with one of the two psychiatrists associated with Swedish's Cancer Institute only to discover that neither of them is part of my mental health benefit network. I found this out yesterday, after spending six hours at the Cancer Institute, and was given one name, in all of Seattle, of a psychiatrist who specializes in treating people with chronic illnesses. He has yet to return my phone message from yesterday. I feel I am in serious need of anti-depressants but would prefer this kind of drug to be managed by a mental health professional rather than my oncologist or even my primary care doc, who is not in this week anyway.
When things are too much for me, my preferred method of coping is to go to sleep. I got into bed at 3 PM, with instructions to Rik to wake me if the one shrink called. I did get up a couple of times, but basically I self-medicated and spent 18 hours in bed. I woke up this morning, not exactly refreshed, but feeling more ready to take on a new day. That lasted until now, when I started writing this post.
Long story short, if you don't see a new post from me, it doesn't necessarily mean all is bad. In the past week I also chaired my first meeting of the synagogue board as president; went shopping for makeup with a friend; and laughed through an animated movie. In coming weeks we may go out of town. I appreciate that you all care and I promise will keep up on my blogging as much as my energy permits.
1. Treatment with Abraxane continues to be very tolerable with minimal side effects. I have a CT scan tomorrow (and get the results on Thursday) which should indicate any response so far. Dr. G's plan is to treat me until he sees a response, then add two more months. I think that puts us at re-scanning in three months, getting the hoped-for response, and maybe ending treatment in November. You can see how so many months of chemo appears daunting to me.
2. Lymphedema continues to bug me in the same way -- too much edema in the hand, which is exacerbated by wearing the sleeve and glove. I've been taking a psychological break by not wearing anything during the day, and wrapping at night. This has gone on for about a week. I was measured for new custom sleeves last week. This new brand is supposed to be worn with a glove of the same brand; together they presumably put less compression on the wrist. A regular sleeve and glove, when worn together as appropriate, put MORE pressure on the wrist, thus giving the potential to increase edema in the hand by forcing more fluid there. More stress from this.
3. The left elbow continues to be stuck at about 40 degrees of extension. Even after wearing the black plastic brace every night for two weeks, over my lymphedema bandaging, I still have only 40 degrees of extension. My therapist worked with me to position the brace in a more effective spot on my arm, which may result in additional extension. Or not. I see the orthopedist next week. I do not sleep well at night while I wear this gizmo and yet it seems to be the only thing that will return full extension to my elbow joint. Again, more stress.
4. Pumpkin's death continues to hit both of us hard. He pops into mind at odd moments. It's hard to close my eyes and not visualize him looking back over his shoulder to see where I am. Having Bobka helps a lot but still...
5. Eating the low carb/low sugar diet that Dr. G recommended is very fatiguing. I am tired of having to think about every bite, having to plan my carbs each day. Yesterday after my low carb breakfast of cottage cheese, fruit and a latte, I was hungry again at 10 AM. A coffee and half a piroshky helped, as did the (rather dry) tuna sandwich later supplied by the Cancer Institute. I didn't eat dinner last night (read on). Today I ate bread at breakfast, which pretty much consumes my carbs for the rest of the day. But at least I felt full.
I feel so overwhelmed by all that I am managing that last week I decided to seek professional help. I had lined up an appointment with one of the two psychiatrists associated with Swedish's Cancer Institute only to discover that neither of them is part of my mental health benefit network. I found this out yesterday, after spending six hours at the Cancer Institute, and was given one name, in all of Seattle, of a psychiatrist who specializes in treating people with chronic illnesses. He has yet to return my phone message from yesterday. I feel I am in serious need of anti-depressants but would prefer this kind of drug to be managed by a mental health professional rather than my oncologist or even my primary care doc, who is not in this week anyway.
When things are too much for me, my preferred method of coping is to go to sleep. I got into bed at 3 PM, with instructions to Rik to wake me if the one shrink called. I did get up a couple of times, but basically I self-medicated and spent 18 hours in bed. I woke up this morning, not exactly refreshed, but feeling more ready to take on a new day. That lasted until now, when I started writing this post.
Long story short, if you don't see a new post from me, it doesn't necessarily mean all is bad. In the past week I also chaired my first meeting of the synagogue board as president; went shopping for makeup with a friend; and laughed through an animated movie. In coming weeks we may go out of town. I appreciate that you all care and I promise will keep up on my blogging as much as my energy permits.
Lymphedema Update
Yesterday I had an appointment with the physiotherapist at the clinic. As we walked over to the examination cubicle, she asked me how I was doing. I told her I was feeling ok but my back and shoulders were really achy. I told her that sometimes I’d wake up in the night all sore and uncomfortable. As I was talking to her, I felt a little embarrassed because I know that if I was vigilant on doing my stretches and my exercises, I probably wouldn’t be having these problems.
Anyways, she was very kind to me. She said the best thing you could do is stop sitting around and start moving … something as simple as walking could do it. She said while I’m walking, I should swing my arms too.
She said … unfortunately, most of us have a poor sitting posture, allowing our shoulders to fall forward. This stretches out the shoulder muscles at the back and weakens the front shoulder muscles. This causes the aches. Well, I’ve decided to get moving and walk more.
Once we finished up with that, we got on to the business of measuring up my arm to see if the lymphedema is worse or better than my last visit in January. Well my measurements were up a bit but no biggie. I’m on chemo and we decided that the fluid is going to fluctuate because of that.
My existing sleeve and glove are all stretched out, time for a new set … my my, does the time go by fast or what?
Son of Son of Meltdown/I am Zapped
One symptom of my polycythemia vera is itchy skin. All over? two people asked in one day. No, not all over. Not my hands or feet or face or scalp. But just about everywhere else, so much of everywhere else that it seems like everywhere. It stings as well, sometimes as bad as backyard ants that attacked me while I was trying to rescue my sister, who was being dragged by her (unwitting) friends one night through an ant bed. We rushed inside and ran to the bath tub. I ran water all over my legs and R, all over her head, where the ants had nabbed her. This was in Texas, but before the era of Fire Ants, or else we might not be here to recall the event. Today I'm home, trying to take a short nap and my skin is stinging and I already took a 24-hour Zyrtec (which was mislabeled--should be 24-minute) three hours ago. The itch and sting cause panic and weeping and thoughts that it will always be this way, I can't do anything about it, the medicine doesn't work, Atarax was great while it lasted, before it stopped working, I'm helpless; time stops and this becomes my whole life, I can't go anywhere, I can't escape into sleep. I'm living in the moment, can't see beyond it except to an entire life bounded by this, making me unable to leave the house and it's so bad I cancel my therapy appointment later in the afternoon. I try to reorder some gabapentin, but my prescription is outdated, and the gabapentin didn't work anyway, but it was a fleeting reassurance to think about gabapentin, that there might be something out there that I could reach.
That was a couple of weeks ago. I ended up taking more Zyrtec, and I think a benadryl, and I slept three hours. I'd been to a dermatologist who specializes in skin problems caused by non-skin diseases. He was born in Colombia and his father grew up with a kid who always said he wanted to be a writer. Yes. Garcia Marquez. The dermo said that was a 50/50 chance that phototherapy would help, and his people said they'd check with my insurance. Last week I called to see what the insurance decision was and found out it was in my favor! So yesterday I got zapped. I went to a little office without windows with two nice ladies in it in solid-color uniforms. There were three or four big upright tanks (reminding me of the big round French outdoor bathrooms) and I changed into a gown and paper footies and went inside (luckily, the one that was open on the top), wearing stiff dark goggles over my eyes, attached by an elastic strap, my eyes closed. The lady in green set the machine for 38 seconds and I could hear whooshing around me and could see, through my closed lids and the goggles, purple light, and it seemed to last about two minutes. Then the sound and light stopped and I put on my gown and footies and pushed on the metal bar to open the door. I felt like I'd been in Mr. Peabody's WABAC Machine and that I should be stepping out into the 18th century or any other era. But I was back in the Office of the Two Ladies with dream catchers and psoriasis bulletins on the wall.
L saw me a few hours later and asked if I was still itching.
I was zapped on Monday and now it's Thursday. I'm taking one-a-day Zyrtec just once a day. But I've also been inside a lot; being outside can make my skin itch because there are so many allergens out there.
[Dog scratching pic: http://www.fotosearch.com/photos-images/itching.html]
Monday, June 21, 2010
New Healthy Spirits Bottle Bags!
Pick up one of these cool bottle bags for just $2.99, or for free when you buy 6 bottles! (not including 6-packs).
It's a great way to look sophisticated in public, while caring about the environment.
But that's not all! Every time you fill your bag until the end of the year, you will get 10% off your bottle purchase! Not too shabby.
If you are a member of Beer of the Month Club, you will be getting one of these with July's selections.
cheers,
dave hauslein
beer manager
415-255-0610
Sunday, June 20, 2010
Lifelong and Long Life
It's easy to forget that I'm a "lifer" patient at the City of Hope. But on Tuesday, I'll have several reminders of my forever Hope status.
I'll start off the day with a shot of "Vitamin P," the notorious drug that Michael Jackson mainlined on a daily basis. Unlike the King of Pop, my propofol will be administered by a licensed anesthesioligist in a clinical setting. I'll fall to sleep right before my doctor jabs my rear with a thick needle to extract bone marrow for my annual bone marrow biopsy. And then I'll wake up 15 minutes later, feeling as thought I slept for ten straight hours. I can't wait!
Then I'll spend the next two hours wandering the campus for a mammogram and a bone density scan. (My choice of the word "wandering" is because of my nonexistant sense of direction.) I know it's probably a "business" decision for CoH to encourage patients to come to them for these services, but it's also convenient for me and a comfort to have all of my medical records in one place.
And, finally, I'll meet with Dr. Forman to discuss the results of the PT scan I had last week. The scan will confirm if I'm still in remission or if I've relapsed. Strangely enough, I'm not feeling the usual funny little "is she or isn't she" butterflies. I think it's because my non-patient life has been creating so many flutters that I can no longer tell the difference. I'll also find out if my pesky eosinophils (aka EOS) are behaving themselves.
It will be a long day, but, truth be told, I don't mind being a "lifelong patient," as long as that means that I'll have a nice, long life.
By popular demand: The little man in my life. I love to make him laugh.
I'll start off the day with a shot of "Vitamin P," the notorious drug that Michael Jackson mainlined on a daily basis. Unlike the King of Pop, my propofol will be administered by a licensed anesthesioligist in a clinical setting. I'll fall to sleep right before my doctor jabs my rear with a thick needle to extract bone marrow for my annual bone marrow biopsy. And then I'll wake up 15 minutes later, feeling as thought I slept for ten straight hours. I can't wait!
Then I'll spend the next two hours wandering the campus for a mammogram and a bone density scan. (My choice of the word "wandering" is because of my nonexistant sense of direction.) I know it's probably a "business" decision for CoH to encourage patients to come to them for these services, but it's also convenient for me and a comfort to have all of my medical records in one place.
And, finally, I'll meet with Dr. Forman to discuss the results of the PT scan I had last week. The scan will confirm if I'm still in remission or if I've relapsed. Strangely enough, I'm not feeling the usual funny little "is she or isn't she" butterflies. I think it's because my non-patient life has been creating so many flutters that I can no longer tell the difference. I'll also find out if my pesky eosinophils (aka EOS) are behaving themselves.
It will be a long day, but, truth be told, I don't mind being a "lifelong patient," as long as that means that I'll have a nice, long life.
By popular demand: The little man in my life. I love to make him laugh.
Official - feet are no longer icebergs
Last night in bed, D and I were talking about how my feet are no longer icebergs like they were most of 2009. That Taxotere did a real number on me … me and my feet were always cold. At night I used to snuggle up to D and I’m sure he’d get a cold chill up his spine every time I snuck up with my feet. Often I’d go to bed with a heating pad at my feet and it would still take hours to warm those babies up.
Now I’m finding my feet are hot and I’m looking to cool them down … especially now that summer is here. At night, I’m always kicking the covers off to cool down. So here I go … different chemo different side effects.
One of the other things with Taxotere is that it was really hard on my immune system and somewhere along the way, I picked up a planters wart. I was disappointed to say the least. Anyways, because I was on active treatment, we couldn’t treat it. To my surprise, after my switch to Xeloda, the wart disappeared. Don’t know exactly when but along the way, the Xeloda burnt that baby right out of its den… horray!….a win for me.
OncoMed Has 'Wnt' in its Sails
OncoMed Has 'Wnt' in its Sails; Bayer Deal Adds $40M Up Front by Jennifer Boggs, Bioworld, June 18, 2010. Excerpts:
[OncoMed's] latest accomplishment is another early stage deal, this time with Bayer Schering Pharma AG, to develop drugs targeting the Wnt signaling pathway. It's an agreement that brings $40 million up front, with the potential for more than $1 billion in future milestones.
.....
The Wnt pathway is believed to be a key target in halting cancer stem cell activity. But only a few other firms - Avalon Pharmaceuticals Inc. (now part of Clinical Data Inc.) and 2008 start-up Wintherix LLC, for example - have entered that space, largely because Wnt is not an easily druggable target.News release from Bayer: Bayer Schering Pharma and OncoMed Pharmaceuticals Enter Strategic Alliance to Develop Anti-Cancer Stem Cell Therapeutics, June 17, 2010. Excerpt:
Bayer Schering Pharma AG, Germany, and OncoMed Pharmaceuticals, Inc., today announced a global strategic alliance to discover, develop and commercialize novel anti-cancer stem cell therapeutics targeting the Wnt signaling pathway. Cancer stem cells are a subset of tumor cells believed to play a significant role in the establishment, metastasis and recurrence of cancer and agents targeting the Wnt pathway have the potential to be developed as pan-tumor drugs.Comment: The Bayer-OncoMed strategic alliance has received attention via the social media. See, for example, the results of this FriendFeed search.
Saturday, June 19, 2010
Day One After Chemo
Yesterday afternoon I threw a blanket under a shade tree and laid down. Then I just closed my eyes and just enjoyed what nature had to offer … a nice breeze, baby and momma birds chirping, leaves rustling, some dogs barking in the distance, wow this is what I needed. It was so nice our dog Daisy joined me and stood guard.
After about an hour or so, I made my way back inside … had some supper, some tv and off to bed at around 8:30. As D was tucking me in, I asked him to open the window just a crack so I could get some of that fresh air going past my face. Before you knew it, I was sleeping like a baby.
I woke up this morning with a headache; par for the course. So I grabbed the Tylenol and decided to quit being a martyr.
I’m a bit down on energy but feeling pretty good overall.
Friday, June 18, 2010
Healthy Spirits: The New Stuff
1. Xyauyu Silver (awesome, rare 4 year old Italian
barleywine)
2. Xyauyu Gold (different version of the same awesome 4
year old barleywine)
3. Ducato Imperial Stout
4.De Dolle Bos Keun
5.De Dolle Extra Export Imperial Stout
6.1809 Berliner Weisse
7. Abbaye De Saint Bon Chien 2007 and 2008
8. Baladin Al-Aksir
9. Baladin Wayan
10. Le Coq Russian Imperial Stout 2008
11. Alvinne Podge Stout (Magnum!!!)
12.Ballast Point Sculpin is back! (limited quantities)
13. Firestone Walker Solace 6pk (low price!)
14. Lagunitas Lucky 13
BOOM!
dave hauslein
beer manager
415-255-0610
Chemo Day
I just got back from my Vinorelbine chemo. Normally my appointment takes just over an hour but today it was two hours. The nurses were busy with someone who was having an allergic reaction to their chemo, so everything got backed up a bit. They kept apologizing for the wait … I said no troubles … I would want the same attention if it were me. Besides, it gave me a chance to make small talk with the neighbors.
Once the nurse started my infusion, it didn’t take long for me to feel nauseous, way more than last week. As it was all going into me, I could really taste and feel the chemo and the saline flush. Yik! And on top of that, my nose was really sensitive to all the medical smells. Don’t know what was going on with me today but boy o boy was I glad to get outta there.
It’s sunny and warm here and my next move is to throw a blanket under a shade tree in the back yard and lay down. I need some of nature’s good healing
CIRM and Wisconsin sign a Declaration of Cooperation
Wisconsin Governor Jim Doyle and California’s State Stem Cell Agency Sign Declaration Of Cooperation to Advance Stem Cell Research toward Cures, News release, California Institute For Regenerative Medicine (CIRM), June 17, 2010. Excerpts:
The California Institute for Regenerative Medicine (CIRM) and the state of Wisconsin, coordinated through and led by the University of Wisconsin-Madison, expect to identify opportunities to further the advancement, promotion and funding of stem cell research and the development of stem cell therapies.
.....
CIRM currently has similar agreements with the Cancer Stem Cell Consortium of Canada, the State of Victoria in Australia, the JST in Japan, the MICINN in Spain, the MRC in the United Kingdom, the BMBF in Germany, MOST in China and the state of Maryland, and the New York Stem Cell Foundation.
Thursday, June 17, 2010
Mayo test results are in, and ...
... Bon Jovi, put some clothes on, for the love of God! Aren't you getting cold?
Yeah, my M-spike is up to 3.6. I want to stress that, even though 3.6 freaks me out a little, Dr. H says she is NOT AT ALL FREAKED OUT BY THIS. She said she totally understands how it would freak me out to watch it move from 1.7 to 3.6 in a year's time, but she sees myeloma patients all day, every day, and she's seen people who move from 1.7 to 3.6 in one week's time, so I'm actually doing very well. All of my other numbers are fine. I'm a teeny bit anemic, but, again, not enough to freak out Dr. H.
That said, she also thinks it's time to start thinking about some drugs again, probably within the next couple of months, just to be on the safe side. I have a few options. One is to return to Revlimid, either with or without the dex (I vote for without). The other is to enroll in a clinical trial of pomalidomide plus dex at the Mayo Clinic. If you read my highly scientific and insightful posts about ASCO, you already know that pomalidomide is Revlimid: The Next Generation:
Yeah, my M-spike is up to 3.6. I want to stress that, even though 3.6 freaks me out a little, Dr. H says she is NOT AT ALL FREAKED OUT BY THIS. She said she totally understands how it would freak me out to watch it move from 1.7 to 3.6 in a year's time, but she sees myeloma patients all day, every day, and she's seen people who move from 1.7 to 3.6 in one week's time, so I'm actually doing very well. All of my other numbers are fine. I'm a teeny bit anemic, but, again, not enough to freak out Dr. H.
That said, she also thinks it's time to start thinking about some drugs again, probably within the next couple of months, just to be on the safe side. I have a few options. One is to return to Revlimid, either with or without the dex (I vote for without). The other is to enroll in a clinical trial of pomalidomide plus dex at the Mayo Clinic. If you read my highly scientific and insightful posts about ASCO, you already know that pomalidomide is Revlimid: The Next Generation:
I haven't decided what I'm going to do yet. On the one hand, pomalidomide is supposed to be a better drug, with fewer side effects than Rev, and I would get it for free, since I'd be on a clinical trial. On the other hand, I feel like I should exhaust the Revlimid (which was still working for me when I quit), before I move on to the next drug. Plus, I'd have to go to Mayo once a month for the pomalidomide trial, and I'd be required to take it with dex, at least at the beginning. With the Rev, I have the option to try it without dex to see if it worked alone.
Decisions, decisions. What would Bon Jovi do?
Patent application: Levels of Oct1 as a method of identifying CSCs
(WO2010065400) Cancer Biomarker and Methods of Using Thereof.
Excerpt from PCT Biblio. Data:
Excerpt from PCT Biblio. Data:
International Application No.: PCT/US2009/065742Excerpt from Description:
Publication Date: 10.06.2010
Described herein are biomarkers which can be used for identifying a subject at risk for or evaluating the progression of cancer. In certain aspects, these biomarkers can be used to identify cancer stem cells. These biomarkers can include Octl or molecular variants thereof and downstream targets of Octl. In addition, described herein are methods for reducing the expression of these biomarkers associated with cancer.
Blood Test for Chemo
This morning I was at the clinic getting my blood drawn and tested in anticipation of chemo tomorrow. I didn’t see the Onc … just the nurse who went over my blood work with me. My white cell count has recovered to 2.5 and that’s really good so chemo is a go tomorrow.
The nurse and I discussed my schedule. No chemo next week because it’s week three of my cycle and a no visit the following week because of Canada Day falling on my chemo day.
So I get a two-week break. I’m not crazy about skipping the chemo on the second week because I’ve skipped so many lately because of my PICC line infection.
Otherwise I’m feeling really good on Round One and that’s great.
Wednesday, June 16, 2010
ok
I want to let you all know (those of you who have been asking, wondering or worrying) that the reason I've not blogged since Friday is that I've been incredibly busy and that I haven't fallen completely apart.
I'm still feeling incredibly sad but there have also been some unbelievably beautiful moments in the last few days and those have kept me going.
I'll try and find some time to blog tomorrow afternoon but I wanted to take a moment tonight to say thanks to each one of you who have offered your love, support and understanding.
We're keeping J-Dog as comfortable as we can for as long as we can and I am spoiling him rotten (lots of treats, feeding him from the table, wet food and lots of cuddles).
Pumpkin's theme songs
When we first got Pumpkin I was so goofily in love with him that I decided he needed theme songs. Not one, but three. Who couldn't benefit from a song that defines you?
(Sung to the tune of Hava Nagila)
Pumpkin
He is a Cocker
A Cocker Spaniel
And a King Charles Cavalier (2 x)
Pumpkin’s a happy dog
He has a wiggle butt
He is a shmoopy boy
With a wiggle butt. (2 x)
Pumpkin is a doggy!
Pumpkin is a happy doggy
With a very wiggle butt.
Pumpkin is a happy doggy
With a very wiggle butt.
Pumpkin IS
A Cocker Spaniel AND
A King Charles Cavalier.
(Sung to the tune of Tzena Tzena)
Pumpkin (7 times) He’s a dog, a very happy doggie.
Pumpkin (7 times) He’s a dog, a happy dog.
He is better than the other Cockers
And the Cavalier King Charleses too.
You should see him wag his little tail
To Jill and Riki he’ll be true!
Pumpkin (18 times) He’s a happy dog!
(Sung to the tune of "The Lion Sleeps Tonight")
A wiggle butt (16 x)
In Seattle, in grey Seattle
There lives a little dog.
His name is Pumpkin
He is a Cocker
And a Cavalier King Charles
Chorus:
He….
Has a wiggle butt (he does)
He….
Is a wiggle butt (a dog)
When Pumpkin was just a little puppy
His fluffy tail was cut.
When he’s happy,
He wags his stump and
He shows his wiggle butt.
Chorus
He….
Has a wiggle butt (he does)
He….
Is a wiggle butt (a dog)
Oh --
A wiggle butt, a wiggle butt!
La Nausée dans le Métro
Nausea makes me feel gentle, compassionate toward everyone sitting with me. Slows me down. Makes it so I can't read on the L. I have to look. I feel sorry for people. The man with the bump in his nose with his head down. Somber. I feel open to others: the two boys with freckles and tan hair and baggy tan shorts in the two seats that hug the wall, their mother catty-cornered. The older one's (maybe 10?) eyes open, alert, waiting and watching for Grand. Finally, they're there and leave for the excitement that awaits them there.
Nausea can be subtle. You pay attention to yourself. Is it gone? Where is it? What was the matter again? What did I feel? It comes back when you're unaware. There it is again. Pressing against the soft palate, the nape. Back again, inside the head, between the nape and the palate. Alighting as softly as a moth. Now somewhere down the throat.
I had La Nausée Monday night (threw up--not so subtle) and the next day. Tuesday morning I went to the drugstore to pick up Effexor, which had been waiting there for me for a few days. I'd kept meaning to pick it up. Monday night I was going to, but then there was the chance to see Metropolis at the Music Box, in all its restored silent-movie science-fiction proto-Nazi benevolent-dictator-propagandistic Deco-Expressionist-melodramatic glory.
It ended at 11, after the pharmacy closed. At the CVS Tuesday morning, N, one of the few techs who has stayed there for years, was speaking casually in Spanish to a couple. When they left she got my Effexor and I said I had una pregunta por la farmacia--, happy that I remembered the word for question, since it's a cognate in French, which is usually the primary second-language that pops into my head. N corrected me: La farmacéutica, and I kept repeating it after her to capture all the syllables. I told la farmacéutica (in English) that I had felt nauseated, and that I'd run out of Effexor for a couple of days, and I was thinking the two were connected. Yes, she said, that's a symptom. Withdrawal.
I took the two big red capsules of Effexor with the water I'd brought (or brung, as we used to say in my Texas childhood) with me, and wanted to feel better immediately. I didn't. It took about 12 more hours to be entirely free of the nausea.
The stupidest illnesses are those that we can control. Nausea caused by sloth.
{Breugel the Elder, The Seven Deadly Sins]
Tuesday, June 15, 2010
More Pumpkin memories
Pumpkin came to us in 2003.
He had been abandoned at a "kill" shelter and was rescued originally by a woman specializing in cocker spaniel rescue. (A "kill" shelter is one where, if no one claims the abandoned animal after a certain number of days, it is euthanized.) This wonderful woman took him home, had him checked out by a vet who estimated his age at seven and neutered him. She named the dog Pumpkin, groomed and socialized him and then advertised on Petfinder.com for a "forever" home. We passed her inspection and Pumpkin arrived during Passover, dressed in a blue bow and looking like the perfect dog.
My parents happened to be in town for a visit and friends with a dog who had a good grasp of doggy temperament came over to check out Pumpkin. Arturo Tosca-bow-wow gave Pumpkin his approval and we took to one another immediately.
We three went to obedience training and Pumpkin learned to walk nicely on a leash without pulling, sit, stay, down and come when called. He was very motivated by dog cookies to excel!
That summer, when we moved into the current house, Pumpkin loved exploring the yard and the neighborhood. The fence wasn't complete and he would frequently roam at night. We would have to go after him with a flashlight and his leash to make sure he wasn't hit by a car. We usually found him a few doors down the block, eating the cat food left out by our neighbors. We quickly finished fencing the yard completely.
We started going to the beach and Pumpkin loved to romp in the sand, chase birds and even swim a little in the ocean (as long as I went in with him). On one trip with friends, both dogs got caught up in the mighty Moclips river current and were in danger of being washed out to sea before we could leash them and pull them to safety.
After Pumpkin came into our lives, three sets of friends also got dogs. Pumpkin was a good example of how a loving, friendly dog can become part of your family.
For the first five years he was with us, I was still limited in mobility and Pumpkin worked as my service dog. He could go to a cafe or restaurant, to the movies, to the doctor (but not the dentist). Dr. Judy, Arturo's person, used to say that Pumpkin had the uncanny ability to become a piece of furniture and not call attention to himself. Once I brought him to a large benefit luncheon of more than 1000 people. He went quietly into a down under the table, which had a floor-length cloth. I had neglected to warn our server that there was a dog present, and he unknowingly stepped on Pumpkin's protruding foot. The dog yelped, the waiter startled, and the whole banquet room full of people looked around for what caused the noise. I don't know who was more mortified, the waiter or me.
After the field near our house was turned into a housing development, we went to the nearby off-leash park. Pumpkin would romp around, be the dog police and bark at other dogs if he thought they weren't playing nicely. He particularly loved running between Rik and I, back and forth, over and over again. He refused to chase a ball more than once or twice in a row and then he was done playing. After one play session, I went past a dog show and on the fly, Pumpkin was able to qualify for the AKC's Canine Good Citizen award. He wore the patch proudly on his little doggy service vest.
More recently Pumpkin lost his hearing, although he always knew when I moved around the house and would follow me from room to room faithfully. In this respect he was truly a velcro dog. He had separation anxiety issues and would drool and pant if he was left alone in the house. It didn't matter if it was five minutes, five hours or five days, Pumpkin hated being alone. I think this was due to being abandoned and it is common among rescued shelter dogs.
In some respects, Pumpkin was the child that infertility, cancer, and failed adoption attempts prevented us from having. If we appear to mourn his loss more than some would expect, now you know the reason. As much as we saved him, he saved us.
Several of our friends who were here on Sunday to celebrate Rik's birthday sent beautiful messages to us yesterday:
Pumpkin played a very special place in my life and in the life of my family. I am speechless and at the same time I have so much to say. I saw so many shades of love through all those that loved and enjoyed Pumpkin. His lovable doginess started a movement with our dog and changed our family life!
Pumpkin was very lucky to have you during the second half of his life. You showed him consistency and love and care - you went to all lengths to give him a safe and comfortable life, and he brought a lot to your lives. I will miss his little wagging tail.
You were so good for Pumperdoodle and he was so good for you. Our son's love of Pumpkin was one reason we got a dog ourselves.
What I am sure of is that Pumpkin is thanking you even now for making a difficult but wise quality of life decision.
Pumpkin had a place in all of our hearts. We share your loss.
Drop Everything and Fight Cancers Below the Belt
As taken off their website ...
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Monday, June 14, 2010
The Rainbow Bridge
Just this side of heaven is a place called Rainbow Bridge.
When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge. There are meadows and hills for all of our special friends so they can run and play together. There is plenty of food, water and sunshine, and our friends are warm and comfortable.
All the animals who had been ill and old are restored to health and vigor; those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by. The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind.
They all run and play together, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent; His eager body quivers. Suddenly he begins to run from the group, flying over the green grass, his legs carrying him faster and faster.
You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.
Then you cross Rainbow Bridge together....
Author unknown
Remembering Pumpkin
We had to euthanize Pumpkin around 6 PM.
It turns out that for a couple of weeks he had been walking around on a pathologically fractured leg (sound familiar?). He saw the vet last week but did not have an xray taken, was given anti-inflammatories. Yesterday he came down hard on that bad leg, yelped in pain, and today's xrays revealed cancer and the fracture.
The vet suspected the cancer had already metastasized and that even with surgery and chemotherapy, or an amputation, Pumpkin would only have about six months. The vet could not manage his pain other than with intravenous opiates which we could not administer at home. A fentanyl patch would have taken 12-18 hours to be effective with no way to make him comfortable at home in the meantime. So rather than have P spend his last night in distress at the clinic, in order for us to have one more day with him, we made the right decision, which all pet owners have to face at some time or another, to take care of his pain in the only way left.
The vet was extraordinarily sympathetic. He brought Pumpkin out to us for a last cuddle and P was very stressed, even with morphine to ease his pain. The vet administered an overdose of anesthesia and P relaxed and was dead within moments.
Yesterday Pumpkin was running around the yard, sniffing out his turf, and willing to sit on everyone's lap even after he was hurt. This has been a really tough birthday for Rik.
We are both very sad. Pumpkin was a very good dog. He was about 15 and we were lucky to have him for eight years.
Down and up and down and up and down
The past few days have felt like being on an out-of-control elevator: down and up and down and up and down again.
Thursday
The lymphedema therapist listend to me kvetch about my continued frustration with lack of elbow response and edema issues and recommended I choose not wearing compression garments either for a couple of days or nights. I chose daytime and went without a sleeve and glove for the remainder of Thursday, Friday and Saturday. This was an UP.
Friday
Because I had a naked arm (one of only a few occasions in the past eleven years), I overdid things. I took the dog to the vet, had a morning meeting, went to my yoga class, ate a quick lunch, bought groceries, picked up Rik and got the dry-cleaning. By the time we came home I was prostrated with exhaustion from running around for more than six hours straight. I immediately went to the sofa but was unable to sleep. I also couldn't move, so there I lay until evening. We ate a bad frozen pizza from Trader Joe's for dinner, and Rik went back to school for a meeting. DOWN DOWN DOWN.
Saturday
I woke up feeling refreshed enough to go to synagogue. (I am also constitutionally incapable of being in the house for 24 hours.) I cam home and despite the bright, sunny, warm day, again had to lie down but was unable to nap. My arm began to show not having been in a daytime compression garment for two days. DOWN.
Sunday
I put on the compression sleeve without the glove in hopes that the sleeve alone would be enough. Went to the grocery store to pick up a pie for Rik's 50th birthday. UP. Tried to pull some weeds from the yard -- couldn't. Stupid elbow! DOWN. Decided to accomplish something within my capabilities and did some ironing. Definitely UP. Put out pie, bubbly and freshly made lemonade for our friends. UP.
Not five minutes after the first people arrived, Pumpkin came down on his bad left rear leg and yelped. HUGE DOWN. We called the vet, they told us about the nearby emergency clinic. In the meantime more people are arriving and everyone has to know what's happened. In this barely controlled chaos, N intervened, suggested we celebrate Rik's birthday by toasting him and eating the pie; we could always go to the emergency clinic later if Pumpkin didn't improve. N sat on the chaise outdoors with Pumpkin on her lap, where he relaxed and we began to as well. After toasting Rik, eating strawberry-rhubarb pie and vanilla ice cream, we all felt better. More UP.
Later, after everyone had left, N came back with some doggy anti-inflammatories and Pumpkin ate one with his dinner. He finally relaxed enough to sleep. I wrapped my arm (my hand was very puffy from being in the sleeve but no glove all day) and was very cranky from all the stress. DOWN. Tried to nap, again couldn't sleep but couldn't move from the sofa. DOWN.
Rik ordered Chinese food for dinner but didn't realize the restaurant had given us someone else's order. Instead of tea-smoked duck and steamed vegetables with rice cakes. we received two containers of unidentifiable fried food which were covered in chili peppers, noodles (but no vegetables) and white rice. Is this how the rest of America eats? DOWN. One container appeared to hold pork, the other perhaps fish. I was tired and hungry and disappointed but not energetic enough to insist Rik return and get our correct order. He ate the noodles and fish. Since I'm eating a low carb diet and had already had pie and ice cream, noodles were out for me and the "fish" was inedibly spicy, even for me. Rik offered to make me something, but I had already eaten eggs that morning. I tried but could not summon the energy to even open the jar of peanut butter. DOWN DOWN DOWN DOWN.
I gave up and went to bed. After dropping the pills on the floor twice and roaring with rage and frustration, I took a sleeping pill and some ativan and pulled the covers over my head at 7 PM. DOWN.
Monday - Rik's 50th birthday
I slept until 5 AM with brief lucid periods when I heard Rik bring Pumpkin in the bedroom and talk on the phone. I never did hear him come to bed.
Chemo went fine today. UP. I again tried to nap afterwards but couldn't sleep. Maybe I need to try a different location.
At 3:00 we took Pumpkin to the vet. He is still there, being sedated for an xray and given IV pain meds for an examination by the doctor to determine what's wrong. Apparently his knee is injured but that's all we know now. DOWN. More later.
Haopy birthday, Rik. What a way to celebrate.
Thursday
The lymphedema therapist listend to me kvetch about my continued frustration with lack of elbow response and edema issues and recommended I choose not wearing compression garments either for a couple of days or nights. I chose daytime and went without a sleeve and glove for the remainder of Thursday, Friday and Saturday. This was an UP.
Friday
Because I had a naked arm (one of only a few occasions in the past eleven years), I overdid things. I took the dog to the vet, had a morning meeting, went to my yoga class, ate a quick lunch, bought groceries, picked up Rik and got the dry-cleaning. By the time we came home I was prostrated with exhaustion from running around for more than six hours straight. I immediately went to the sofa but was unable to sleep. I also couldn't move, so there I lay until evening. We ate a bad frozen pizza from Trader Joe's for dinner, and Rik went back to school for a meeting. DOWN DOWN DOWN.
Saturday
I woke up feeling refreshed enough to go to synagogue. (I am also constitutionally incapable of being in the house for 24 hours.) I cam home and despite the bright, sunny, warm day, again had to lie down but was unable to nap. My arm began to show not having been in a daytime compression garment for two days. DOWN.
Sunday
I put on the compression sleeve without the glove in hopes that the sleeve alone would be enough. Went to the grocery store to pick up a pie for Rik's 50th birthday. UP. Tried to pull some weeds from the yard -- couldn't. Stupid elbow! DOWN. Decided to accomplish something within my capabilities and did some ironing. Definitely UP. Put out pie, bubbly and freshly made lemonade for our friends. UP.
Not five minutes after the first people arrived, Pumpkin came down on his bad left rear leg and yelped. HUGE DOWN. We called the vet, they told us about the nearby emergency clinic. In the meantime more people are arriving and everyone has to know what's happened. In this barely controlled chaos, N intervened, suggested we celebrate Rik's birthday by toasting him and eating the pie; we could always go to the emergency clinic later if Pumpkin didn't improve. N sat on the chaise outdoors with Pumpkin on her lap, where he relaxed and we began to as well. After toasting Rik, eating strawberry-rhubarb pie and vanilla ice cream, we all felt better. More UP.
Later, after everyone had left, N came back with some doggy anti-inflammatories and Pumpkin ate one with his dinner. He finally relaxed enough to sleep. I wrapped my arm (my hand was very puffy from being in the sleeve but no glove all day) and was very cranky from all the stress. DOWN. Tried to nap, again couldn't sleep but couldn't move from the sofa. DOWN.
Rik ordered Chinese food for dinner but didn't realize the restaurant had given us someone else's order. Instead of tea-smoked duck and steamed vegetables with rice cakes. we received two containers of unidentifiable fried food which were covered in chili peppers, noodles (but no vegetables) and white rice. Is this how the rest of America eats? DOWN. One container appeared to hold pork, the other perhaps fish. I was tired and hungry and disappointed but not energetic enough to insist Rik return and get our correct order. He ate the noodles and fish. Since I'm eating a low carb diet and had already had pie and ice cream, noodles were out for me and the "fish" was inedibly spicy, even for me. Rik offered to make me something, but I had already eaten eggs that morning. I tried but could not summon the energy to even open the jar of peanut butter. DOWN DOWN DOWN DOWN.
I gave up and went to bed. After dropping the pills on the floor twice and roaring with rage and frustration, I took a sleeping pill and some ativan and pulled the covers over my head at 7 PM. DOWN.
Monday - Rik's 50th birthday
I slept until 5 AM with brief lucid periods when I heard Rik bring Pumpkin in the bedroom and talk on the phone. I never did hear him come to bed.
Chemo went fine today. UP. I again tried to nap afterwards but couldn't sleep. Maybe I need to try a different location.
At 3:00 we took Pumpkin to the vet. He is still there, being sedated for an xray and given IV pain meds for an examination by the doctor to determine what's wrong. Apparently his knee is injured but that's all we know now. DOWN. More later.
Haopy birthday, Rik. What a way to celebrate.
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