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Thursday, February 23, 2017

Catch-Up Number 3

My chemo treatments for December were timed perfectly! I had a treatment on December 14, with the next treatment not scheduled until Dec. 28. Oldest son Brian announced he would be coming in from Illinois on December 20 and would stay until Dec. 26, which meant I had plenty of time to recoup my energy from the 12/14 treatment, decorate the house and have everyone over for dinner just as we’d always done without having to worry about chemo side and after-effects.

And decorate we did!  The snowman and reindeer were set up outside to greet visitors, then we got the tree up, the mantel decorated and the stockings hung by the chimney
 with care- even though it’s an electric fireplace and there is no chimney, but you get the idea.  We even had snowmen cavorting in the kitchen window.

Brian arrived safely, we had family come down from North Alabama for a visit and soon it was Christmas day'  I cooked our traditional Christmas roast beef and Yorkshire pudding with crispy roasted potatoes and veggies.   There was a  delicious cranberry eggnog trifle for dessert, and I had baked some gingerbread men and gingerbread reindeer cookies for the kids to snack on.

Jeff, Tonya and the grandkids, Kaitlyn and Brandon, couldn’t come up from south Alabama this year since Jeff was recuperating from surgery, and Heather  didn’t make it  home from Australia, but  Misty and the boys, Nicholas and Bradley, came from Hartselle and Jonathan, Sharil and Abby came from just up the road in  Mulga. We  popped our Christmas crackers, put on our paper crowns, read the silly jokes from the crackers out loud, and had a  happy family at the table in our little kitchen to enjoy the  food before  opening our presents.

One of Brian's old friends from high school was visiting from Texas, and he, his daughter and another  old friend stopped by Christmas evening for a visit. I finally remembered to have Mr. G take a picture of Brian and me before he left and here it is-I wish I'd remembered to take the tacky green sweater off, too!
Next morning Mr. G drove  Brian to the airport for the trip home to Illinois, and the house got quiet again.  Agatha and Victoria missed all the company, I think and moped around for a while. My chemo treatments resumed on December 28 and we were back in the old groove again as we closed out 2016.

I had two more treatments in January and another on  February 8 with no problems from the port. And that brings us up to the present, finally. 


Tuesday, February 21, 2017

Catch up- Part 2

I met with the vascular surgeon on  November 21.  He asked when I would like to have the surgery.  I told him the sooner the better. He said he could do the surgery the next morning, which was a Tuesday, and that way I could  have  my chemo treatment on Wednesday,  11/23 using the new port.

We arrived at the out-patient surgery center bright and early and I had the preliminary blood work,  x-rays, etc. I  was wheeled  to the operating room, given  anesthesia and promptly went to sleep.  I woke up in the recovery room with several young doctors hovering over me. One of them asked if I knew what a pneumothorax was.  I replied that yes, I did- it was a collapsed lung. Turns out that’s what I now had in addition to the new port. I was told the port  placement went well that the new port was placed on my right side with a subclavian approach.  Turns out that means my new port has a  catheter that runs  on top of my  collar bone and  up into my jugular vein. In the process of placing it, my lung got nicked resulting in a 20% pneumothorax.  After calling Mr. G in to tell him what was going on, they said they were going to  place a chest tube and admit me to the hospital.  So much for out-patient surgery and having chemo the next day!

The young resident placed the chest tube while I was still in the recovery room and I was taken up to a room and told I’d probably be there for several days.  I told them I had no intention of being there over the Thanksgiving holidays so I began to think positively, visualizing my lung fully inflating as I practiced some yoga breathing.  Oddly enough, the lung didn’t hurt when I breathed and had it not been for the tube, which was quite uncomfortable, I’d not have known anything was wrong. I spent the night and had several visits from various medical personnel the next morning.  My breathing and positive visualizing efforts were working! After a series of x-rays showed that my lung was fully inflated, they said they would remove the tube and if everything checked out I could go home later that day. The young resident who had placed the tube and an intern came in at around 2 o’clock to remove the tube. That was quite an interesting experience. First they took a big piece of gauze and covered it with something resembling Vaseline. They placed the dressing over the tube and snipped some sutures that held the tube in place.  The young doctor told me they were going to apply some pressure and when they did I should take a deep breath and hold it. Which I did, and as I did one of them said, “pull” the other one pulled and out came the tube.  They taped the dressing in place and said they’d need to check for a few hours to make sure everything was OK.  That meant several more x-rays.   My oncologist stopped by to check on me and told me to call the office on Monday to reschedule my missed chemo session, and I was discharged   at 7PM on Wednesday.  So I didn’t have to stay in the hospital over the Thanksgiving holidays after all and we were able to eat Thanksgiving dinner at  Jonathan and Sharil’s house as planned!  Yippee!

My chemo treatment was rescheduled for   Wednesday, 11/30 and the new port worked well for both the blood draw and the treatment, which was quite a relief.  The port and catheter were quite uncomfortable for quite a while afterwards, though, whenever I turned my head or moved my arm a certain way, and the dry skin   across my chest did not help. A post op visit with the vascular surgeon confirmed everything seemed to be healing well and there haven’t been any problems with blood draws or treatments since the surgery.

I had a CT scan on December 12 that showed a decrease in the size of the ablation focus in the liver and there was no evidence of new metastatic disease, so that was a relief and meant I could enjoy the Christmas season without worrying about what the latest scan  would show. And now we’re almost caught up to the present- one more blog entry should do the job.

Saturday, February 18, 2017

Catch up Post

I guess I’ve been so caught up in political discussions for the last several months that I haven’t thought to post  any updates about what’s happening with my health and in my  life. Quite a bit has happened since  last June as it turns out. This   account will catch   me up to November.  I'll try to  get it all up to date in the next post, so please bear with me.

I had a CT scan  on June 22 that showed the  mass in my liver had decreased in size, so  my oncologist set me up for an appointment with a liver surgeon for a possible resection or ablation. The surgeon  ordered an MRI, PET scan and ultrasound, and decided to do a radiofrequency ablation rather than a resection. I was hoping   we could get it done  right away, but he wanted to wait until after my next appointment with the colorectal surgeon to get his input. Finally we got a date set and I checked into the hospital on August 16 for the procedure.

If you’re wondering what’s involved in a radiofrequency ablation, it can be done either surgically,  percutaneously or laparoscopically. Mine was done laparoscopically.  The surgeon made five incisions, then using  ultrasound imaging as a guide, he inserted  a needle electrode into the tumor.  Since there were several small  cysts that  may or may not have been  cancerous, he  attacked them too. Once the needle  is in position in the tumor, high-frequency electrical currents are then passed through the electrode to ground pads placed on the body, creating focal heat that destroys the cancer cells surrounding the electrode. It may take several  zaps with the needle in different positions to destroy the tumor. I understand  the surgeon went in eight times to zap mine. I was pretty groggy when it was all over and once the anesthesia wore off I was pretty sore too! They kept me overnight and I was discharged the following day.  It was a few days before I could actually walk upright in comfort!

I was scheduled to resume chemo two weeks later, but when I went in on August 31 they were unable to withdraw blood using my port. I   got the blood drawn from a vein and  got a shot of a declotter through the port, but still no draw and chemo was cancelled.  It was cancelled again  on Sept. 14 for the same reason, but   miraculously,   the port  was more cooperative on Sept. 28, and while   they were still unable to draw blood, they were able to go ahead with the  chemo, the first  one since the ablation. When I went in for Chemo treatment number 8 on October 14, I had a nasty  pain in my neck and shoulder as soon as they hooked up the  chemo.  They stopped the treatment and I was sent to radiology for  a fluoroscope to see what was going on with the port.  Turns out that a fibrin sheaf had built up around the catheter, blocking the end,  so chemo was cancelled for  the day.

The docs decided that the port needed to come out and a new one placed. The colorectal surgeon who had  done the  surgery to place the port  did the removal surgery on  October 25. All went well but he  said he would rather have a vascular surgeon  place the new port, so   that was scheduled  for 11/22.  In the meantime  my chemo treatments  were given  via  a needle in my arm.  Oh, how I missed that port!

Thursday, November 10, 2016

An Open Letter to President-Elect Donald Trump

Thursday,  November 10, 2016

Dear Mr. Trump:
 I am one of the 60,122,876 people who didn’t vote for you on Tuesday. I didn’t vote for you because as far as I can tell you have neither the experience, knowledge nor temperament to be President.Furthermore, you seem to have only a tenuous grasp on reality and an inability to tell the truth. But most of all, I didn’t vote for you because you have, with your belligerent, bullying, demeaning rhetoric, fanned the flames of hate and anger in many of your supporters, legitimizing their racist, misogynist, hateful attitudes toward  women, blacks,  Latinos,  other ethnic minorities,  Muslims,  people in the  LGBT community, people with disabilities and  many others.  Just this week,  two of my friends and neighbors have been accosted and traumatized by  people whose hate and anger you have legitimized.

Maybe you didn’t see this coming, but a lot of us did, and it terrified us. It still terrifies us. You say you want to be the President of all the people, but how can that be when you have in effect told your followers that it’s all right to attack and accost those you have targeted in your speeches? How can that be when you have bragged about how smart you are for not paying the taxes that support our schools, our libraries, our hospitals, our  police, our military, our veterans, taxes that guarantee that we have safe food to eat, clean air to breathe and water to drink, that our roads are built and kept in repair, that provide a safety net for those who  fall through the cracks, for the  elderly, for people with disabilities, for the working poor who often work two jobs and still have trouble keeping  their children clothed and fed? Which leads me to question how you  can be pro-life, yet talk about cutting back or taking away services and programs that help to sustain and improve life for those already born? You say you want to make America great again, but how can you do that when you have encouraged your followers to turn on their fellow citizens much as the KKK turned on blacks and Jews and Catholics, when hangings and cross burnings were common during some of the darker, not so great periods of our recent history? And now you have the endorsement of the KKK and some of its leaders, who now feel so emboldened that they are distributing flyers in neighborhoods close to me.

You said that you will bring back jobs and industries that once thrived but are now shuttered, the jobs shipped out of the country. Mr. Trump, a lot of those jobs aren’t coming back, they’re finished. But we do need to encourage innovation for new products, particularly in areas of green energy so we can build up supply chains with skilled jobs that pay well.  We need to support labor unions with their training and apprentice programs to provide a well-paid, skilled workforce. We need to replace the coal and retrain miners for these new jobs so that they can become productive, able to support their families and  be proud of the work they do.  But of course, you believe climate change is a Chinese hoax, don’t you, so no green energy jobs, I guess.  We need to support companies that pledge to  keep jobs here and invest in their workers rather than outsourcing or shipping their operations  abroad, while avoiding paying their share of taxes. We need to find a way to encourage small businesses, and to support American farmers and manufacturers through effective, efficient and fair trade policies and tariffs  that benefit us and our trading partners.

We need to strengthen our ties with our allies, not threaten to abandon them by withdrawing from NATO, and we need to stand up to Russia’s threat of aggression in the Baltic states, not check our balance sheets to determine whether they“have fulfilled their obligations to us.”  That’s kind of rich coming from someone who doesn’t even pay his federal taxes. No, Mr. Trump, I don’t have much confidence in your abilities, nor in your program and policy proposals, and even less in the people you  are reported to be  looking to  appoint  to Cabinet positions.

I would love to be proven wrong, that the great plans, the best plans that you refer to, whatever they are, actually will work well for the nation as a whole. But I would remind you that while you may have won a stunning victory in garnering the most Electoral College votes, you did not win a mandate from the people.  Your opponent actually won the popular vote by roughly 300,000 votes at last count.  Those of us who voted for Sec. Clinton are watching you, and we will let you know how we think you’re doing. Meanwhile I suggest that you make some attempt to rein in your supporters, whose sparks of anger and fear and hate have been fanned into  a raging fire that, if not checked, will burn this nation to such a degree that we will not be able to recover for perhaps generations.  I don’t think you, or any of us, want that.

Grace K. B. Smith

Thursday, June 02, 2016

First and Fifth

On the first of every month my grandmother always said “Rabbits!”  for luck when she  woke up.  I forgot to say “Rabbits”  yesterday. That may account for my most unusual and LONG day at the infusion clinic for my fifth Erbitux/Camptosar treatment on June first.

My appointment was for 8:45 AM and since they ask you to be there fifteen minutes early, we  arrived at 8:30. I signed in, paid my co-pay and was called back to the lab to be weighed, have my temperature taken and my  blood pressure recorded. My temp was below  normal and my blood pressure was slightly low, but  neither seemed to be a problem. Getting blood through the port for the blood test, however, was a major  problem. The phlebotomist, after several attempts in which she had me raise my arm or turn my head, was unable to get my port to draw, so she sent me over to the oncology nurses to see if they could get it to work. They sat me in one of the recliners and tipped it  all the way back so I was nearly standing on my head.  Nothing seemed to work.  The phlebotomist, meanwhile, took blood from my arm so as not to hold  things up any more than was needed. They then injected what the nurse referred to as a liquid plumber to break up any obstruction in the catheter and I was  put in a cold room to give it time to work. Did I mention that the temp in the building is kept just slightly above the temperature in a meat cooler? I was beginning to wonder if my blood had frozen solid and that’s why they couldn’t get it to come out. 

After about an hour in the  exam room the doctor came in, apologizing for all the delays.  Seems they are in the process of converting all the paper patient files to an electronic format, so instead of bringing in my usual thick green folder, she was carrying a little mini computer. Evidently there is a steep learning curve and computer people were constantly bustling about and everything was delayed, even  getting the orders for  the infusions. 
I told the  doctor about the skin reaction I had over the weekend, which was  a LOT worse than the previous  outbreak and caused intense  itching and burning, leaving me with bright red skin,  big welts all over my neck and flaking, dry skin that  was peeling off. I got it under control with some Aveeno products and was amazed at how well they worked on calming the rash and redness down and softening my skin. The doctor said she thought I was probably having a reaction to the doxycycline. She had asked me before prescribing it if I had an allergy to tetracycline, and I told her I had no idea, since I had taken so few drugs in my life. Turns out I may have an allergy or a sensitivity to it after all. We’ll see how it goes this time without the doxycycline.  She said I’ll have my sixth treatment in two weeks and then another scan the week after that to see how the drugs are working. I told her that  between my thinning hair and  scaly flaking skin I thought  I was transmogrifying into a hybrid cross between Lizard Lady and Gollum, so they had better be working just to make all this worthwhile! Meanwhile the nurses tried a few more times to get blood to draw, to no avail. I was told they would send someone  to take me to radiology to see if the port and catheter have shifted or become obstructed and needed to be removed and replaced. I kept my fingers crossed that the problem was a minor, easily corrected one.

I went back   to the waiting room to… yes, wait.  So I waited and waited for the wheelchair person to show up. Finally, after making a few calls and determining that  everybody was tied up  for emergencies, one of the receptionists from the oncology department wheeled me over.  That was quite a trip, down hallways, around corners, through the walkway connecting the clinic to the main hospital, then down more hallways.  It was a regular maze and I would never have found my way over there on my own, even if I had been able to walk that far without collapsing!

Once I was up on the radiology table and the plates were placed under me, the doctor moved the machine into position, assuring me that the arm would come very close to me but wouldn’t actually touch me. Then he had me hold my breath while the machine did its thing. It was kind of neat to actually see the port in place and how long the catheter was. The radiologist was able to draw blood with no problem, there was no obstruction or kinking and nothing had shifted, so they don’t know what the actual problem was. I was wheeled back out and waited once more for the valet service to take me back.  I thought, since it was already past 1:00 and my infusion has been taking between four and five hours, that they might reschedule, but they decided to go ahead and told me I should be finished up by 4:30. The rest of the afternoon was fairly uneventful. Well, except for the trips to the rest room that became extremely frequent once the infusions began,    prompting the nurse to move me to a chair just outside the bathroom door so I wouldn’t have to drag my pole and infusion bags so far.

Mr. G left at one point to go home and let the dogs out. We were worried they might have accidents all over the house since they hadn’t been out in quite a while. He said they were most anxious to get out, too, and made a mad dash to the back door when he got home.

He came back and spent another hour in the waiting room.  Finally I was finished and we arrived home at around 5:15 PM, nine hours after we’d left.  I was hungry and exhausted, but fell asleep before I got a chance to eat. Mr, G  made me a sandwich and I ate a little when I woke up at 7:30 before falling asleep again. I slept on and off all night and am finally beginning to feel almost normal, or as normal as I usually feel after an infusion. You can rest assured that  on the first of July, I will wake up saying “Rabbits!” to avoid another occurrence like the fifth on the first!

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 subsides within 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 not, 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.