Yes, I sound like a broken record, but I have to go there again - by 'there' I mean FEAR. I knew going into retirement that it would be very important to keep my mind occupied, so that I didn't have extra time to over analyze every new ache, pain or shortness of breath.
For the first few weeks of retirement, I was busy. It wasn't all fun - I had multiple dental and optometry appointments and deferred maintenance projects around the house and yard. But fear is sneaky. It is constantly looking for access to my brain. Following a fun trip to the San Juan Islands in the fall, a shocking number of tragedies occurred: hurricanes reaking havic in Texas and Florida, mass shooting in Vegas, fires in wine country 60 miles north of my town in the East Bay, fire and then mudslides near Santa Barbara, and with each tragedy, I was glued to the tv and internet, letting all of it was soak my brain in constant terror and anxiety bath about what would happen next.
So it is no surprise that by Early 2018, it became clear that the Opdivo was no longer working and I was faced with conventional chemo. In the 2 weeks, prior to my first round, my brain was completely awash in terror.
Saturday, April 14, 2018
Sunday, July 2, 2017
in the face of adversity, there is nothing wrong with a little hope.....
I have arrived at retirement. Friday, June 30 was my last day of work in local government. Thank god I am able to retire at age 55 with medical benefits and a good pension. Yet another reason to stay positive. During these last 2 years, it was the job and the people that I worked with that were a great source of strength, humor, and general support. Going to work was the one constant in a swirl of medical craziness, and for that I will be forever grateful. I was very apprehensive and stressed out during the final few weeks, as my post working future seemed to be a big gray void. That final day was so special and emotional, but I realized something on that last drive home, I am ready to begin my next chapter! In fact, I have to admit that I haven't stopped smiling for the past 2 days. RETIREMENT IS AWESOME - BRING IT ON!!!
Friday, April 28, 2017
Dealing with Difficult Days - the Yervoy and Opdivo experience
The good - I have finished my 2 remaining Yervoy treatments.
The bad - Yervoy has some serious side effects like nausea, diarrhea and extreme fatigue. Side effects that have lasted a few weeks now, and I'm finding that staying mentally positive and joyful is difficult when I'm feeling crappy and tired.
The crazy - I filed paperwork and will be officially retiring in 2 months! (more on this in a future post)
Four weeks after the last Yervoy / Opdivo infusion and I am still trying to get the side effects under control. The fatigue has reduced the frequency and intensity of extra activities like working out at the gym and walking the dogs, and the nausea and diarrhea are annoying as hell. It got to the point that I didn't want to leave the house (aka the safety of a private bathroom) to go to the movies, shopping or out to dinner. A little tip - the doggie pick-up bags from the park make good barf bags in a pinch!
I tried over the counter medicine for nausea, but it made the diarrhea worse. I tried medicine for the diarrhea and it made the nausea worse. So I turned to my Oncologist. After trying Zofran and another anti-nausea drug that Dr. C prescribed, I still had no relief, so I had to go back on steroids for a week. After 24 hours the nausea subsided, and after 4 days the diarrhea finally let up. Unfortunately, the steroids raised my blood pressure and I had to wind down the Prednisone sooner than planned. Of course the nausea and diarrhea showed up again.
So I scoured the internet and finally found the idea to try probiotics from a previous Yervoy/Opdivo patient blog post. After a few days of eating yogurt and taking a supplement, the symptoms have subsided, so hopefully, I've turned the corner for the better on the intestinal distress. In addition, I found another patient account that described their gastro intestinal issues as subsiding after a couple of months, so hopefully I won't be tied to the bathroom any longer.
After an additional week delay, I am back to the original every two weeks for an hour Opdivo schedule. Hallelujah!
So how do I deal with difficult days? BADLY I have tried breathing exercises, meditation, getting on with life while trying to ignore it all, talking about it, not talking about it, basically driving myself and those around me crazy! I mostly just want to imitate George Carlin and go on an epic swearing rant.
The bad - Yervoy has some serious side effects like nausea, diarrhea and extreme fatigue. Side effects that have lasted a few weeks now, and I'm finding that staying mentally positive and joyful is difficult when I'm feeling crappy and tired.
The crazy - I filed paperwork and will be officially retiring in 2 months! (more on this in a future post)
Four weeks after the last Yervoy / Opdivo infusion and I am still trying to get the side effects under control. The fatigue has reduced the frequency and intensity of extra activities like working out at the gym and walking the dogs, and the nausea and diarrhea are annoying as hell. It got to the point that I didn't want to leave the house (aka the safety of a private bathroom) to go to the movies, shopping or out to dinner. A little tip - the doggie pick-up bags from the park make good barf bags in a pinch!
I tried over the counter medicine for nausea, but it made the diarrhea worse. I tried medicine for the diarrhea and it made the nausea worse. So I turned to my Oncologist. After trying Zofran and another anti-nausea drug that Dr. C prescribed, I still had no relief, so I had to go back on steroids for a week. After 24 hours the nausea subsided, and after 4 days the diarrhea finally let up. Unfortunately, the steroids raised my blood pressure and I had to wind down the Prednisone sooner than planned. Of course the nausea and diarrhea showed up again.
So I scoured the internet and finally found the idea to try probiotics from a previous Yervoy/Opdivo patient blog post. After a few days of eating yogurt and taking a supplement, the symptoms have subsided, so hopefully, I've turned the corner for the better on the intestinal distress. In addition, I found another patient account that described their gastro intestinal issues as subsiding after a couple of months, so hopefully I won't be tied to the bathroom any longer.
After an additional week delay, I am back to the original every two weeks for an hour Opdivo schedule. Hallelujah!
So how do I deal with difficult days? BADLY I have tried breathing exercises, meditation, getting on with life while trying to ignore it all, talking about it, not talking about it, basically driving myself and those around me crazy! I mostly just want to imitate George Carlin and go on an epic swearing rant.
Monday, March 6, 2017
Is it ethical for drug companies to make sooooooo much money from people with cancer?
I have been fortunate to be treated with Opdivo for a year and a half, even though I haven't had any treatment in over 2 months. Yes, I hope to return to get my Yervoy/Opdivo combo treatment this week, as long as my liver enzymes cooperate. And yes, I do hope to continue with immune and target therapies for as long as I can. All that said, something has been really bugging me for a while now, especially when just about every article about cancer research is focusing on immune therapy drugs as if they are miracle drugs - what is bugging me is the fact that these therapies are continuous and NOT A CURE .
Just today, I read another article that said that former President Jimmy Carter was cured. He isn't cured, and just like the rest of us, he has to continue to get regular Keytruda treatments every couple of weeks. There is NO end to paying out for these very expensive drugs. In other words, the for-profit drug companies are making a SHIT LOAD of money at the expense of those of us with advanced cancer.
Let's put it another way: while I am grateful to be alive and have a decent quality of life, The for-profit drug companies have NO incentive to cure me or my fellow cancer patients. These companies instead are VERY HAPPY to have an extremely expensive drug that we literally have to purchase from them every two weeks or we DIE.
Here is the thing, the Republican controlled government is in the process of repealing the Affordable Care Act (ACA). ACA removed the spending cap per person that insurance companies used to place on how much they will cover. I have recently read that the spending cap may be reintroduced in the Republican's health care replacement. If that happens, it won't take long for those of us who rely on these ridiculously expensive treatments to reach their spending limits, and since these drugs cost thousands each month, unless we are rich, we will all just DIE.
Bottom line, my life may be in the hands of the idiots currently in charge of the gov't - unless the greedy drug companies lobby to not have a cap in the ACA replacement, so they can continue to exploit their captive cancer clients.
Either way, NOT a comforting thought.
Just today, I read another article that said that former President Jimmy Carter was cured. He isn't cured, and just like the rest of us, he has to continue to get regular Keytruda treatments every couple of weeks. There is NO end to paying out for these very expensive drugs. In other words, the for-profit drug companies are making a SHIT LOAD of money at the expense of those of us with advanced cancer.
Let's put it another way: while I am grateful to be alive and have a decent quality of life, The for-profit drug companies have NO incentive to cure me or my fellow cancer patients. These companies instead are VERY HAPPY to have an extremely expensive drug that we literally have to purchase from them every two weeks or we DIE.
Here is the thing, the Republican controlled government is in the process of repealing the Affordable Care Act (ACA). ACA removed the spending cap per person that insurance companies used to place on how much they will cover. I have recently read that the spending cap may be reintroduced in the Republican's health care replacement. If that happens, it won't take long for those of us who rely on these ridiculously expensive treatments to reach their spending limits, and since these drugs cost thousands each month, unless we are rich, we will all just DIE.
Bottom line, my life may be in the hands of the idiots currently in charge of the gov't - unless the greedy drug companies lobby to not have a cap in the ACA replacement, so they can continue to exploit their captive cancer clients.
Either way, NOT a comforting thought.
Thursday, February 9, 2017
Doing It My Way
2017 New Years Resolution - experience joy every day! So I am taking a break from self-help books, I plan to enjoy food, enjoy movies, enjoy friends and family, and feel as well as I can, despite not having any treatment since the end of December. I spent 2016 lazar focused on learning and making rigorous life style changes to support healing, so now it's time to give myself a bit more balance. In essence, I am a grad student on an extended spring break - okay, but with green drinks not alcohol :-(
Update - so I have had 2 of the 4 Yervoy treatments before my liver enzymes started registering too high for chemo. Currently, I am enjoying a few weeks on prednisone, which so far has been awesome! Gym workouts are amazing, and I have had plenty of energy for long walks with the dogs, extra yard and housework that's been neglected, and an overall feeling of clear headedness and clear breathing. I'll admit that I am worried about the changes taking place in my body, but I am choosing to focus on how I feel today, not what the future holds for me tomorrow.
One of the self-help items that I studied and even took a class at the library on last year was meditation. Based on my research, I tried to set a daily time and place for meditation, following some of the formal instructions and practices that I learned. However, what I have found is that for me, it works better if these introspection sessions are more organic and spontaneous, such as closing my eyes while sitting in a waiting room, or maybe while I am laying in bed, after I've awoken, or am on a quiet walk in nature. I'm finding the length of time doesn't matter, some times it's 2 minutes, other times it may be 20. On this cancer journey I am finding out that if I get quiet, breathe, and take my mind below the surface crazy and noise, that I can hear and follow my own inner voice much easier. And, by doing it my way, I actually look forward to meditation.
When I was growing up and learning to swim, once I mastered diving deep and staying under water, I could look up at all of the kids legs and arms splashing and causing waves. Surface noise was muffled or non-existent, and I could just hang out for a few seconds in peace. So while a formal meditation practice continues to be a challenge for me, if I make it more spontaneous and flexible by visualizing my young swimmer self, I can quiet my mind more easily and better focus on making decisions and plotting a path forward. This will be crucial for my health, given the current political climate and fears over what the future may hold.
So 2017 will be the year that I integrate the self-help information that I have learned to enrich and enjoy life, not just live a Spartan restrictive existence to extend it.
Interestingly enough, I find that when I make a course correction, such as I am doing now shifting from an intense learning focus to an implementation focus, the directions and the guides seem to show up for me. Here is a great example of this. It's a pbs news story on immunotherapy:
https://www.pbs.org/newshour/amp/bb/cancer-immunotherapy-life-saving-powers-limits
Update - so I have had 2 of the 4 Yervoy treatments before my liver enzymes started registering too high for chemo. Currently, I am enjoying a few weeks on prednisone, which so far has been awesome! Gym workouts are amazing, and I have had plenty of energy for long walks with the dogs, extra yard and housework that's been neglected, and an overall feeling of clear headedness and clear breathing. I'll admit that I am worried about the changes taking place in my body, but I am choosing to focus on how I feel today, not what the future holds for me tomorrow.
One of the self-help items that I studied and even took a class at the library on last year was meditation. Based on my research, I tried to set a daily time and place for meditation, following some of the formal instructions and practices that I learned. However, what I have found is that for me, it works better if these introspection sessions are more organic and spontaneous, such as closing my eyes while sitting in a waiting room, or maybe while I am laying in bed, after I've awoken, or am on a quiet walk in nature. I'm finding the length of time doesn't matter, some times it's 2 minutes, other times it may be 20. On this cancer journey I am finding out that if I get quiet, breathe, and take my mind below the surface crazy and noise, that I can hear and follow my own inner voice much easier. And, by doing it my way, I actually look forward to meditation.
When I was growing up and learning to swim, once I mastered diving deep and staying under water, I could look up at all of the kids legs and arms splashing and causing waves. Surface noise was muffled or non-existent, and I could just hang out for a few seconds in peace. So while a formal meditation practice continues to be a challenge for me, if I make it more spontaneous and flexible by visualizing my young swimmer self, I can quiet my mind more easily and better focus on making decisions and plotting a path forward. This will be crucial for my health, given the current political climate and fears over what the future may hold.
So 2017 will be the year that I integrate the self-help information that I have learned to enrich and enjoy life, not just live a Spartan restrictive existence to extend it.
Interestingly enough, I find that when I make a course correction, such as I am doing now shifting from an intense learning focus to an implementation focus, the directions and the guides seem to show up for me. Here is a great example of this. It's a pbs news story on immunotherapy:
https://www.pbs.org/newshour/amp/bb/cancer-immunotherapy-life-saving-powers-limits
Tuesday, January 17, 2017
New Year - New Hope
I refuse to let cancer, politics, news, and fear of the unknown rule my life in 2017! I know - easier said than done.
November 8th, 2016, the day I would like to erase from my brain, the day a scan showed my cancer growing again, and instead of the first well-qualified female president of the US being elected, we have another big-egoed conservative dude, with NO government qualifications, trying to trample on the first amendment, women's rights, healthcare, and the environment, about to take over the country.
To say that 2017 will be challenging for me is an understatement, however I also believe that everything happens for a reason. I have spent the end of 2016 angry, sad, and scared. The one thing I know for sure is that if I let these emotions continue into 2017, I probably won't see 2018.
November 8th, 2016, the day I would like to erase from my brain, the day a scan showed my cancer growing again, and instead of the first well-qualified female president of the US being elected, we have another big-egoed conservative dude, with NO government qualifications, trying to trample on the first amendment, women's rights, healthcare, and the environment, about to take over the country.
To say that 2017 will be challenging for me is an understatement, however I also believe that everything happens for a reason. I have spent the end of 2016 angry, sad, and scared. The one thing I know for sure is that if I let these emotions continue into 2017, I probably won't see 2018.
Thursday, December 1, 2016
Change...Fear...Anger......
I haven't written about this before because I had to process it first. According to my latest CT scan taken 11-8-16, my lung tumors are growing again. Dr. C has added Yervoy (ipilimumab) to my Opdivo chemo regime for the next 4 cycles. I have had one cycle so far.
Once again, emotions ran strong and took over for a while. It wasn't the shock and sheer terror that followed diagnosis, this time I had an overwhelming 'angry at the world' feeling because my treatment was letting me down. Instinctively, for the next few weeks, I let the anger run its course, until it and other repressed emotions were expelled. Once again, Bernie Siegel's question, 'do I want to live?' had to be examined and answered within myself. I recommitted to health.
A big THANK YOU to Mom and my family for putting up with me through the emotional cancer craziness. I recently found a blog post that best sums up what it is like to have cancer. It is written by a chemo nurse who was diagnosed with colon cancer. Here is a link: https://herecomesthesun927.com/2016/11/14/dear-every-cancer-patient-i-ever-took-care-of-im-sorry-i-didnt-get-it/
lighthouse on a recent trip to Mendocino, CA
Once again, emotions ran strong and took over for a while. It wasn't the shock and sheer terror that followed diagnosis, this time I had an overwhelming 'angry at the world' feeling because my treatment was letting me down. Instinctively, for the next few weeks, I let the anger run its course, until it and other repressed emotions were expelled. Once again, Bernie Siegel's question, 'do I want to live?' had to be examined and answered within myself. I recommitted to health.
A big THANK YOU to Mom and my family for putting up with me through the emotional cancer craziness. I recently found a blog post that best sums up what it is like to have cancer. It is written by a chemo nurse who was diagnosed with colon cancer. Here is a link: https://herecomesthesun927.com/2016/11/14/dear-every-cancer-patient-i-ever-took-care-of-im-sorry-i-didnt-get-it/
lighthouse on a recent trip to Mendocino, CA
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