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Sunday, May 08, 2016

I've got you under my skin

That is my song for Erbitux today. It is definitely under my skin, and not in a good way. Today I am going to indulge in a little (or a lot of) whining. The nasty Erbitux rash has spread from my face down to my neck and beyond, itches and burns like crazy and  my skin is unbelievably dry and flaky!  Mr G says it looks much better today than it did yesterday, but it sure doesn’t feel any better!

We had grand plans yesterday to go to Pepper Place Market and then do some grocery shopping and pick up some herbs for my herb garden, but decided it might be a better idea for me to stay in out of the sun, since sunlight exacerbates the rash. I’ve been slathering SPF30 sunblock on my exposed skin, wearing a hat, sunglasses and long sleeved shirt when I’m outside, etc., but maybe I should just become a nocturnal creature and venture out only after dark. I guess gardening is on hold, too, which is a big disappointment.  I’m not sure that gardening after dark is such a good idea.  There’s no telling what the neighbors might think if they looked out their windows and saw me wielding my spade and digging holes in the back yard! So we’ll just wait and hope the rash subsided wirhin the next few days.

I’ve been using the Clindamycin gel the doctor prescribed, and it did seem to work after the first and second Erbitux infusions, but doesn’t seem to be doing much good this time around. The itching and burning woke me up  last night and the night before, and I was unable to  get back to sleep, so took a Benadryl.  I don’t know whether that was a good idea or mot, but it did let me go back to sleep. If the rash  hasn’t improved by tomorrow I plan to call the clinic to see if there is something else I should be doing for it, but in the meantime, I’ll just gripe and complain.  I’m getting really good at it, too- just ask Mr. G!

Here’s a pic Mr. G took this morning of my “looks much better today” rash.

Thursday, May 05, 2016

Three Treatments Down

Yesterday we left for the clinic at 8:45 AM and arrived back home at 3PM.  Five of those six hours were spent in the infusion chair. It was a LONG time! I watched other people come and go, get hooked up and unhooked.  Only my fellow infusee in the next chair was in there almost as long as I was and we chit-chatted a little when both of us were awake- although we both drifted off a few times.  He has pancreatic cancer and has been  on chemo for almost a year, too. He said he'd lost about 70 pounds  since his diagnosis and lost all his hair at one point, although most of it has grown back now. He couldn't believe I had lost neither weight nor hair. He is a fairly upbeat person, although most of the people I've talked to who come in for treatment the same time I do are philosophical about the whole thing and are pretty upbeat.  My chairmate told me there was no family history of cancer, but that he had already lost a son to cancer several years ago, before he himself was diagnosed. His son left behind a four year old and a five year old child. We commented how hard it is to watch a young person with  his or her whole life ahead of them be struck with this devastating disease, and it does seem that an increasing number of younger people are being diagnosed. I sometimes wonder whether it’s because diagnostic tools are much more precise and are able to detect disease earlier, or whether there really is an increase caused by environmental factors.

Yesterday was my third treatment with the Irinotecan and  Cetuximab. I did have one mishap.  On one of my trips to the restroom, (and after all that liquid is pumped into one there are many trips, believe me) I managed somehow to  pull the needle out of the port.  That was  quite a shock and I didn’t have the presence of mind to close the clamps on the tubing so I leaked a little of the chemo, but I’ll know to do that if it happens again. Fortunately, the nurse was close by and got me rehooked straight away. Except for the fatigue and the skin rash I’m tolerating the treatments  well so far.  I did go to sleep when we got home yesterday and slept most all of the evening and into the night, with frequent wake up calls by my bladder. I still feel tired this morning, and the rash and flushing are spreading down my neck and onto my chest. Most of the acne-like pustules that formed during the first and second treatments have pretty much cleared up, thanks in part to the clindomycin gel the doctor prescribed- at almost $100 a tube. I also had some eye problems that developed after the first treatment- my eyes were crusted shut when I’d wake up and then start running and itching.  That cleared up after a few drops of the prescription eye drops. Now I am  left with very red, very rough, very dry and flaky patches of skin.  I feel as though  tightly stretched alligator hide has replaced my skin! I have switched from coconut oil to emu oil- I figured a bird might be a better adversary for an alligator than a coconut would be and so far, so good.

I have been able to remain active, for the most part,  attending events and   working in the garden. On the Friday of the off week between the first and second treatments I attended a wonderful performance of Beethoven’s Fifth Symphony performed  by the Birmingham Symphony Orchestra  at one of their coffee concerts. These concerts, held in the morning, are less formal, less expensive than the evening concerts and are not as crowded.  I have  been lucky in being able to get my favorite seats in the Dress Circle very close to the exit and   almost in touching distance of the bass  section. I also get a wonderful side view of  our marvelously dynamic conductor, much better than looking at his back for the whole concert!

Our forty third anniversary fell two days after my second treatment, on Friday, April 22.  I slathered on some SPF 30  sun block,  donned my hat and a long sleeved shirt and we celebrated by attending the Magic City Art Connection, a wonderful  three day  show of arts and crafts held in  Linn Park in downtown Birmingham.  The weather forecast hadn’t been too promising but  the rain, except for a few sprinkles, held off for the duration of the show. It was great to   visit  some of my artist friends  who had work for sale, to enjoy the live jazz music, and to run into two of my favorite street photographers and a few other friends while we were there.

My gardening efforts are ongoing, but there is still a lot of work to be done. We’ve had a few rainy days, which seemed to give a lot of slow starters the impetus to get going. I t also   gave the weeds a  growth spurt, so there’s always some  good and some bad effects  when it rains.  The beans are coming along nicely and  will need to be thinned out, I think since the seeds seem to have drifted and  they look quite  crowded in spots. I  planted out some of the calendula I’d started from seed, some strawberries in the tub planter and  Mr G dug up and moved a clump of Echinacea, some Tagetes lucida, a couple of thyme plants and  I re-potted some of the plants that go on the deck, so it does look as though something has been accomplished.  Today it’s quite windy, sunny and a little chilly, so in between the weather and my fatigue I won’t even try to get out and work in the garden today.  Maybe tomorrow, because, after all, to plan a garden or to plant a seed is to believe in tomorrow.

Tuesday, April 12, 2016

Weak, Woozy and Wet Weather

I may have overdone it by going to the market on Saturday.  I spent most of Sunday feeling weak and woozy, which was most frustrating. I did get a few things accomplished but not much. I decided on something simple for supper, so made  a chicken and avocado salad with  almond/orange dressing, using a recipe from Annabel Langbein’s cookbook.  The chicken was surprisingly tender and juicy, which was a surprise since most of the breasts we’ve cooked lately have been tough and tasteless. I’ll probably use her method of poaching chicken using mostly residual heat, from now on.

By Monday I was feeling a little more energetic and got plenty of exercise by going up and down the basement stairs to do several loads of laundry. For only two people Mr. G and I seem to have a lot of dirty laundry. Sometimes, when I view the pile of laundry that needs to be washed, I wonder if   someone isn’t sneaking in and dropping off their laundry hoping I won’t notice.  But alas, it is all ours. After getting the laundry washed, dried, folded and put away, I  decided to cook some of the shiitake mushrooms we had bought on Saturday.  I chopped about half of them, along with some white mushrooms I already had, and made a  mushroom velouté. I don't know if it was the mushrooms or just time doing its thing, but I do feel more energetic today and not nearly as fatigued as I have been feeling.

I had hoped that when my energy level improved we’d be able to get some things done in the garden, but the weather hasn’t been cooperative-  it’s been rainy, windy, cloudy and  generally not good weather for being outside, and it looks like the forecast is calling for more of the same.  There’s plenty that needs to be  one inside, so I won’t be idle- but it’s more fun  to be outside playing in the dirt!  Meanwhile, I’ll  look at  pictures of past efforts in the garden and  keep hoping I’ll be able to  get out there soon to finish  weeding and bed prepping and get on to the business of planting!  Last year, not sure  how I was going to react to the chemotherapy, I pretty much   did my gardening on the deck, in containers, which worked out well,  as  you can see from these pics, 

but  I’d like to get some stuff in the ground  again this year, and  rework my  little raised beds again   These pics are from 2014, and that’s what I’m aiming for, as well as having a  nice deck garden again. Except for the Squash.  I will not grow squash.  Squash vine borers and other  critters that have attacked   my squash plants every year leaving a   limp and wilted  mess rather than the nice  healthy robust plants I began with have convinced me that I am no match for them. I have tried every non-toxic remedy I could find, to no avail.  I admit defeat. I will concentrate my efforts instead on picking off the  tobacco hornworms that  seek to destroy the tomatoes every year. Organic gardening in the Deep South is a challenge.  I love a challenge- as long as it isn't TOO challenging ;-) 

Saturday, April 09, 2016

This Little Piggy Went to Market

Today was the first market of the new season at Pepper Place Farmers Market, and I was determined to go because it’s become a tradition. So, heeding the warning to avoid sun exposure while on Erbitux, I slathered on the SPF 30 sunscreen, donned long sleeves and a hat and off we went.  The long sleeves, and the turtleneck I wore turned out to be a good choice because it was   a tad on the chilly side this morning.  As we neared the market, the streets were lined with cars for blocks and people were walking.  I didn’t know if I was quite up to walking a great distance since I still felt just a little weak and wonky, but sometimes the fates smile upon us, and they did today. We lucked out, and found a spot just across the street from the market on our first pass.

The market is usually crowded on opening day, but today was as crowded as I have ever seen it. 

You could barely move.  And dogs! It seemed like every other person there had brought his or her dogs.  It would be nice if they would also bring pooper-scoopers and not let their dogs on retractable leashes  tangle  themselves around folks' legs, but. . .Some dogs were very well behaved; others   seemed to be over stimulated by the sights and scents. This guy was one of the calmer ones, waiting patiently for his folks to finish making their purchase. I could never take Agatha and Victoria- the excitement would be too much for them and they'd  most likely have conniption fits and never recover!

There were vendors with all manner of food and craft items.  The fresh veggies and strawberries were in abundance and there were two mushroom vendors. We bought some spinach, strawberries and shiitake mushrooms. We decided to grab a cup of coffee and something to eat and sit at one of the tables.  Mr. G bought some boudin sausage and I grabbed a chocolate croissant. It was nice and relaxing to sit and listen to Debbie Bond and Rick Asherson play the blues and watch the little kids grooving to the music and dancing, having a grand time. 


It was a fun morning, but I was   quite tired so we decided to head for home.   
Once  home I took a nice long nap. Altogether it was a pretty good Saturday, perfect weather with blue skies, a wonderful market with fresh veggies, happy little kids, and blues music for entertainment. Who could ask for more?

Thursday, April 07, 2016

Progress Report- Good News and Bad News

 Spent another long day in the oncology clinic yesterday; we got there at 8:30 AM and left just after 2 PM.  One of the oncology nurses had phoned on Monday to ask if I could get there an hour early because the doctor was changing my chemo drugs and the new combination would need to infuse at least four hours.  I figured the CT scan results from last week’s scan must not be what we had hoped for. As it turns out there was some good news and some bad news on the CT scan. The bad news is that the liver tumor has increased in size by 18%. The good news is that all the other hypodensities in the liver and pancreas have remained stable and that the stomach, small bowel, appendix and colon appear normal and the rectal mass is still unseen. Based on the growth of the liver tumor, my oncologist started me on a new chemo regimen today.  I thought at first that I would be getting FOLFIRI plus Erbitux, but I’m actually just getting the Erbitux and Camptosar (Irinotecan), both of which have some fairly nasty side effects, but have shown a lot of promise in clinical trials, especially in patients with wild type KRAS gene, which I have.  So I guess that makes me a wild child. I’m hoping I can tolerate the side effects without having to stop the treatment early. One of the side effects of the Erbitux is an acne-like rash which I hear is quite unpleasant.  The doctor said if I did get the rash to call and they would phone in a prescription for a gel to use on the rash.  I hope it doesn’t come to that.  One should not have to deal with acne in one’s seventies; I am sure there are better ways to fake a youthful appearance!

Once in the infusion room I saw that someone had already taken my favorite chair so I wasn’t as close to a plug for my Kindle. It didn’t really matter as it turns out because I kept drifting off to sleep anyway and didn’t use the Kindle much.  I took the Tylenol the nurse brought, and then she hooked me up with some benadryl and  anti-nausea drugs. After that, we got the heavy stuff.  A short while after the Erbitux began flowing I began to itch.  Furiously. On my arms, legs, abdomen, buttocks. Then welts started popping up.  I looked and felt like I had been closed up in a roomful of angry, hungry, biting mosquitoes!  The nurse stopped the Erbitux and hooked up something to stop the itching.  It worked, thank goodness!  She told me my mouth would get very dry, like it had cotton stuffed in it. Sure enough it did, but she had brought me a cup of water and a peppermint candy- they helped a lot. We were able to continue the infusion of the Erbitux, then they hooked up the Camptosar and after another hour and a half, I was unhooked  and on my way.  The best part is that I’m not on the pump any more! The doctor took me off 5-FU. Hallelujah!

Much as I dislike this whole set of circumstances, I am constantly reminded that some people are a lot worse off.  One poor elderly woman who came in for her first treatment didn’t yet have a port.  It took three nurses to try to get a vein that would work.  She kept hollering in pain telling them to take it out, she’d just come back tomorrow.  They finally gave up and   took her down to radiology, so she might be getting a combination of chemo plus radiation. I hope she gets her problem sorted out, but she has a rough road ahead, for sure.
When I went back to the waiting room to find Mr.G he said I looked pale as a ghost, and after looking in the mirror I have to agree with him.  I could probably try out for a part on the Walking Dead and not even need make-up! Once we were in the car, I kept dozing off and went straight to sleep once we got home.  I slept most of the afternoon, off and on and felt completely wiped out.  This morning I still look like death warmed over, but am feeling much perkier, although my face feels hot (no fever) and has a strange mottled appearance with some red blotches, grey skin  areas. To make things worse the bags under my eyes look like I’ve been packing them for a trip. This too shall pass.  At least I hope so!

Tuesday, March 29, 2016

CT Scans and Craneflies

I had a CT scan yesterday with contrast.   Since I had a nasty reaction to the barium solution I drank beforehand for the  previous CT scan,  I was told to arrive an hour or so before the scan to drink  a solution they had  at the center.  After I  registered  a nurse brought out a bottle of what appeared to be clear water.  It was Omnipaque, an iodine solution in powder form mixed with water. It actually was  nearly tasteless and much easier to get down than the barium solution.  Best of all, it caused no  nasty reactions. About an hour after I’d  finished drinking it,   a technician called me back,  took a finger prick blood test to  check kidney function and had a nurse access my port. While they were doing the preliminary positioning, test scans, etc., we discovered that the buttons on my new shirt are not plastic, as I thought, but have some metal component that  screwed up the image, so we  began over, sans shirt, and they  began pumping in the iodinated intravenous contrast. That is always such a strange sensation and I’m so glad the tech warned me about it he first time I had a scan. Within   seconds of the dye pumping in, you  feel   a lot of heat,  especially in the groin area,  and get the sensation that you  are wetting yourself.  If they had not  warned me I would have sworn I WAS actually wetting myself. It’s very strange, but passes quickly.  The table slid  into the CT doughnut,  the whirring began, a disembodied voice ordered me to " Breathe in," "Hold your breathe," "Breathe!" a couple of times and   before I knew it, the tech was telling me we were finished. Now to wait for the results and keep fingers and toes crossed that the rectal tumor and  metastasized  liver tumor have shrunk, there are no new lesions anywhere, and the existing  spots and lesions have disappeared or remained stable.

Not having had anything to eat or drink since supper the night before I was ravenous when we got home at around  1 P.M. and desperately craving  a cup of coffee. Mr. G made some coffee, and  ham and cheese sandwiches, with loose leaf lettuce from our own little crop growing on the deck.  After that I napped for a little while before going outside to do some watering in the greenhouse and weeding in my little jungle of a garden bed.  It is somewhat frustrating to get tired so very easily, but   working fifteen or twenty minutes then taking a ten or fifteen minute break DOES get the job done, albeit a bit slower than I would like. The plan was that   I would cook supper early than take a short  break before getting ready for yoga. I had told the instructor that I probably wouldn’t be there because  I’m usually so fatigued for  three or four days after I get unhooked from the pump, but this time, I had a lot more energy, so I planned to go. Problem is, I fell asleep on my “short” break and by the time I woke up  it was too late to even think about cooking supper, getting showered and going anywhere, so I missed yoga class.  We did have a nice supper, though: more recipes from Annabel Langbein: Mediterranean baked fish and a slightly tweaked version of her parsley mashed potatoes (I added sour cream), and  spinach bacon and avocado salad with raspberry vinaigrette.

Today I’ve been back outside weeding the jungle, fighting to control the  ever expanding soapwort, watching   the cedar waxwings   gobbling the berries off the holly tree, and  wondering why these two,  who I think are craneflies, were at it for well over an hour on the back door didn’t  get a room somewhere!

Sunday, March 27, 2016

More Political Ponderings

Since I  was first diagnosed  with cancer last year, my Medicare  supplemental policy insurance has been billed just over  $307,000 for the  physician care, tests, biopsies,  scans and treatments I’ve received. Because Medicare and the insurance company have been able to negotiate lower costs with the providers, they have paid only a portion of that amount, and  my total  out-of-pocket expenses are capped at $6700 per year. It’s still a hefty amount which threatens to destroy whatever meager savings we have managed to accumulate, but I am extremely grateful  to have the coverage and wish all Americans could have the security of knowing  they  can get affordable care, should they face a similar diagnosis or a catastrophic accident requiring extensive care. Which is why the idea of universal coverage as Bernie Sanders proposes appeals to me a great deal.   I like a lot of Bernie Sanders plans in theory.  But I have a lot of questions on how some of these plans would actually be implemented and question his and his campaign managers’ grasp of financial matters,  I find myself asking, "How?" to most of what Sanders says he is going to do. "How do you plan to convince Congress to increase taxes on the rich, increase wages, create jobs, extend Medicare to all as well as guarantee a free college education, etc.?" How much does Sen. Sanders actually know about how Medicare works? Does he realize how much those of us receiving Medicare have paid into it, how much our monthly premium deducted form our Social Security checks for Part B coverage is? Does he know that we have a pretty hefty out of pocket expense and that while it does provide many preventative services, Medicare does not cover most dental or eye care services, and does not cover hearing aids? What about the current  Medicare portion of the FICA payroll tax  paid by both  employers and employees to  cover Medicare premiums? Now the Medicare tax is 1.45%  for those earning under $200,000. Those earning   more than that amount also pay an additional 0.9% Medicare surtax.  Will that be increased or will the   tax be scrapped and rolled into an all inclusive payroll tax for universal healthcare? What about the unemployed?   How will their  tax be covered? Medicare is  truly a wonderful thing as is the idea of  universal healthcare is a goal we should strive for.  I believe the Affordable Care Act is a first step in the right direction toward achieving that goal, but when I look at the  Republican congressional opposition to it, the number of efforts to overturn the law and the  many Republican governors who have refused to expand Medicaid  so that their  constituents are eligible , I wonder just how realistic  many of Sanders sweeping proposals and promises are as opposed to Secretary Clinton’s more pragmatic approach and her determination to   support  down ticket Democratic candidates at  state  levels. Because   it is as the state and local level that a lot of legislative change and political  leverage  is needed

 A  question about Bernie Sanders’ free college  for all plan.   According to the summary on his site, Sanders’ plan  states that total tuition at public colleges and universities amounts to about $70 billion per year. Of that cost, under the Sanders plan the federal government  would be responsible for  67% of the cost while the states would be required to pick up the remaining 33% . But according to data from the Center on Budget and Policy Priorities, states have been cutting funding  for K-12 programs since the 2008 recession and most states have not restored those earlier levels.  In fact, in about half the states reporting, less general aid  per student is being  provided now than in 2008, and In three states, including Alabama, funding  cuts are 15% or more.

The cuts also affect higher education. While state funding for higher education has been rising slightly in the last  couple of years, there is still a large reliance on student tuition to fund higher education.  US News reports that, “ Overall, half of states now receive more financial support from tuition dollars than from state or local funding. And the reliance on tuition revenue varies widely between states, from a low of 15.1 percent in Wyoming to a high of 84.5 percent in Vermont.”

Sanders’ plan calls for  financing the federal  funding  by Imposing a Robin Hood Tax on Wall Street, a Wall Street speculation fee on investment houses, hedge funds, and other speculators of 0.5% on stock trades (50 cents for every $100 worth of stock), a 0.1% fee on bonds, and a 0.005%fee on derivatives. He estimates that this fee will raise the necessary  money with some left over, but nowhere  in the plan does he address the problem of where the already cash-strapped states are going to come up with their share, nor of what happens  if  there is another  recession or a drop in speculation, stock trades, etc.

Sen. Sanders said, “I promise at the end of my first term we won't have more people in jail than in any other country. .But according to the Bureau of Justice Statistics, of the  2.2 million Americans in prison at the end of 2013, only 215,000 inmates, less than 10% were in federal prisons. The rest were in state and local facilities. Even if he freed every prisoner in federal prisons, we would still have 2 million   people in prison.

And  back to taxes:  Many of the tax inequalities in this country are due to  state and local taxes. According to the Institute on Taxation and Economic Policy (ITEP), “On average, the poorest 20 percent of taxpayers nationwide pay more than double the effective tax rate paid by the richest 1 per cent of households (10.9 percent v. 5.4 percent). ITEP’s analysis factors in all major state and local taxes, including personal and corporate income taxes, property taxes, sales and other excise taxes.  And a lot of those taxes are state and local taxes that  affect the poor. Here  in Alabama, the poor pay more than 1½ times as much of their income on state and local taxes than the rich. Alabama also has some of the nation's highest sales tax rates, which disproportionately affects middle - and lower-income earners, and we also pay a tax on groceries.  Yet  Sen. Sanders' plan calls for adding  even more of a tax burden on the middle class.  As he noted in an October 2015 interview with George Stephanopoulos,“If you’re looking at providing paid family and medical leave – which virtually every other major country has – so that when a mom gives birth, she doesn’t have to go back to work in two weeks or if there is an illness in the family, dad or mom can stay home with the kids, that will require a small increase in the payroll tax.”  Right now there are federal  laws being proposed to deal with these issues including the Family And Medical Insurance Leave (FAMILY) Act, which would create a national paid family  and medical  leave insurance program  that would provide up to 12 weeks of partially - paid leave for reasons covered by the FMLA.  Also, more than $2.2 billion proposed in the Department of Labor’s Fiscal Year 2016 budget that would hel p states fund and implement new paid family and medical leave programs, and $35 million proposed for states to create the infrastructure needed to develop new state paid leave programs . Does Sanders propose to build on these policies or scrap them and  start from scratch? How does he  intned to get   Republican governors and state legislators on board, given the opposition they have shown to the Affordable Care Act?

I worry, with so many  Sanders supporters vowing that they  will not support  Clinton if Sanders loses the nomination,  that all the enthusiasm for the “revolution” that Senator Sanders is calling for  will  die down and that his followers will drop out rather than continue to work on passing progressive legislation and in getting  progressives elected to  local and state offices.
 So, yes,  I have a lot of misgivings about Senator Sanders’ proposals, and policies and the  way he has used the  Democratic Party he has scorned as being  part of the establishment responsible for our current   inequities and problems to further his own candidacy without supporting other progressives within the party.  Both candidates have flaws, all politicians do, and no politician is  going to be able to please 100 percent of  his or her constituency  all of the time.  What I wonder about is, do Sanders and his supporters realize that bankers and the 1%  are also part of the fabric of this country with rights and interests.   Their interests shouldn’t outweigh the interests of middle class and poor Americans as they have in the past and do now,  but in order to institute reforms and rein in   the influence of money in politics, compromises will have to be negotiated. In order to accommodate the interests of a diverse populace and best serve the needs of the country as a whole, adversaries with different ideologies will have to work together. Given that Sanders has castigated and alienated the banking industry and the rich to  a large degree, I’m not sure Sanders  is the best candidate to effect those changes, reforms and  compromises.