Battle Fatigue in the War on Cancer

It's been almost two years since I first received the diagnosis that I had rectal cancer and that it had metastasized to my liver, making it the dreaded stage four. Once upon a time, a stage  four diagnosis of rectal cancer was an imminent death sentence but new  advances in treatment have changed that. Although the long term survival statistics are still not all that good, there are  many people who have survived longer than five years and who enjoy an active lifestyle. Although my cancer is not considered "curable" we plan to "manage" it as though it's a chronic  disease, fight it and keep it too weak  to fight back and spread its tentacles into other organs.

So my body has become a war zone in the war against cancer. I am the head of  my own little kingdom that has been invaded by a formidable enemy and have had to call in some troops from outside to help wage this war. The surgeons,  radiologists, oncologist, and I discuss and plan the strategies; the nurses, medical techs, phlebotomists, pharmacists and  others behind the scenes prepare and administer the weapons.

There have been advances, retreats, skirmishes and all out battles as different chemo combinations have been tried out. I received a surgically implanted port that could be used to infuse the drugs and also the contrast dye for CT scans. I  received eight  chemo treatments using a combination of FOLFOX and Avastin.  Although these drugs  can cause some nasty side effects, I was very fortunate to have escaped the worst of them and  they did seem to  work on shrinking the tumors.  Next I went to 28 radiation treatments while simultaneously hooked up  to a 5-FU chemo pump that delivered chemo 24 hours a day 5 days a week. That shrank the rectal tumor but the liver tumor was growing, and was joined by several tiny spots that were too small to diagnose as  cancerous. Emphasis  shifted to the liver and another chemo combination was tried with limited success. Finally, we began using a targeted therapy of Irinotecan (Camptosar) and Cetuximab (Erbitux) that has been shown to be effective in stage four  colorectal cancer.  Finally,the  liver tumor was small enough to be treated with radio frequency ablation.  The liver surgeon performed the ablation in August.  I came away  from the procedure with  five little incisions and was told he had gone in eight times and had also burned out the small lesions, just to be on the safe side. The procedure left me quite sore; it took a couple of days at home before I was able to stand completely upright!

Meanwhile, a fibrin sheaf had formed around the port's catheter and it had to be removed.  The new port was  implanted  on Tuesday, two days before Thanksgiving, by a vascular surgeon, who ran the catheter from the port, over my collarbone and directly into my jugular vein. In the process, my lung got nicked resulting in a pneumothorax, or  partially collapsed lung, so a chest tube was inserted and I was admitted to the hospital and told I would probably be there a few days. Determined not to spend Thanksgiving in the hospital, I worked like crazy with my yoga breathing exercises to try to  assist the chest tube in re-inflating  my lung.  It all seemed to work, the tube was removed the next day and I was discharged on Wednesday night at 7PM so we were able to spend Thanksgiving day   with our son, daughter-in-law and granddaughter at their house as  planned.

Since then,  I've been back on the cycle of receiving an infusion of the Erbitux and  Camptosar every other Wednesday.  Before those drugs are infused I receive several other drugs, including steroids, antihistamines, anti diarrhea drugs  and a couple more to  prevent  side-effects. Today was one of those Wednesdays and I received the 18th  treatment with this  combination. After three or four hours in the infusion chair, I definitely feel the battle fatigue almost as soon as the nurses unhook me and tell me I'm good to go. My speech is slurred, I'm wobbly on my feet. I hit the bed as soon as we get home and sleep off and on all afternoon, waking up to eat a little, drink fluids and suck on ice chips to prevent dehydration. Other than that, I'm pretty much useless all day and poor Mr. G  acts as my minion. 😄 I hope these drugs are continuing to work.  We'll know more after next Wednesday, when a CT scan  is scheduled. Whatever shows up on the scan will determine  whether to continue the current regimen or to develop a new strategy. Cancer is wily and relentless, and may win in the end, but we've kept  the enemy at bay for nearly two years and I have no intention of going down without a fight, battle weariness notwithstanding!

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!

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!

Back in the Infusion room, but it was a good day

Today was the first day of my  new round of chemotherapy to try to shrink the  liver tumor that  metastasized from  the original rectal tumor. When  I finished up the  eight  FOLFOX plus Avastin treatments  in September a CT scan showed that the liver tumor had actually shrunk while on that regimen, but it grew while I was   receiving chemoradiation for the rectal tumor in November and December, so the tumor seems to be quite chemo sensitive. The oncologist wanted to get me back on chemo  as soon as possible to shrink it back to a size amenable to ablation. Since the rectal tumor has shrunk to almost nothing and seemed stable, the  colorectal surgeon also saw the liver mets as a major problem, so they decided to delay surgery and go after the liver lesion with chemotherapy again.

Low white blood cell counts had been the major side effect of the  Folfox  treatments, which delayed  a couple of rounds last  spring and finally ended up with my having to take Neupogen shots between treatments to raise the counts. That was not much fun! The Oxaliplatin also causes quite a few nasty side effects, including  neuropathy in your hands and feet, which I got but it wasn’t  a major problem. This time, I’m getting the FOLFOX without the OX- just the fluorouracil (5-FU) and levoleucovorin (Fusilev),  no Oxaliplatin.  But I am getting the bevacizumab (Avastin) along with them.

It was 24°F when we left for the clinic this morning!  The wonderful Mr. G had braved the cold to start the car a little earlier so it was nice and warm inside. We needed to leave during rush hour to get there in time, and were afraid we’d run into traffic congestion, but it didn’t happen and we were actually fifteen minutes early!  I was weighed, had my blood pressure checked, gave a urine sample and had some blood drawn for testing. My blood cells, both red and white, were high enough to begin the treatment, thank goodness! There weren’t many patients in the infusion room and I was able to pick my favorite chair with the most essential amenities: close to an end wall with a plug for my Kindle recharger, and the chair closest to the bathroom. 

I settled in reading a book on my Kindle and got all cozy under my blanket as the infusion nurses hooked up the IV tubing to my port and began infusing. The first IV bags hooked up contain drugs to lessen the effects of the later drugs: dexamethasone, a corticosteroid that is an anti-inflammatory that acts to reduce swelling, prevent allergic reactions, treat nausea and stimulate appetite in certain cancer patients. Then come the anti-nausea drugs, palonosetron hydrochloride and Fosaprepitant dimeglumine (Emend).  Last, they hook up the Fusilev, then the Avastin. When they have dripped out , the nurse  injects a  syringe filled with   5-FU directly into the  port catheter tubing.  This is called a bolus injection and  is a booster for the 5-FU   infused via the portable pump for the next 46 hours. Once the portable pump was hooked up, I was all finished, got the card for my next appointment in  2 weeks and was on my way home, feeling pretty good but became very tired as the chemo fatigue hit. In fact when we got home today there was a package on the porch, but I was too tired to open it.  I headed straight for the bedroom and took a nice long nap. Agatha and Patches joined me on the bed and hogged my covers.

The birds had emptied two of the feeders while we were gone, and  some of the   plants had dried out as the sun heated up the  greenhouse. When I woke up I actually felt perky enough to  refill the  feeders and water some plants. And I checked the package that had arrived.

It was  Kitchen Gadgetry! As you may know, the wonderful Chef’s Catalog closed up shop after 36 years.  Before they   did, I bought a couple of things at terrific prices in their going out of business sale. That’s what was waiting for us on the porch.  One of the items was  a 5.5 inch Zwilling Pro Ultimate prep knife, described thusly by Zwilling:

“This amazing prep knife will become the go-to knife in your kitchen. It excels at a multitude of tasks—peeling and chopping vegetables and fruit, slicing meats and cheeses, butterflying chicken breasts, deveining shrimp and much more. The well-designed blade allows for plenty of knuckle clearance when you’re chopping on a cutting board yet is small enough for in-hand paring tasks, such as peeling and trimming apples and potatoes. Cooks with small hands will appreciate the compact size of this versatile knife.

The user-friendly ZWILLING Pro prep knife was created by renowned Italian designer Matteo Thun and made in Germany by ZWILLING J.A. Henckels, the company that sets the standard for exceptional cutlery worldwide. It features a unique curved bolster that supports the professional grip, with thumb and index finger on the blade, for safe, precise cutting and less fatigue. The redesigned blade has a broader curve in the front to facilitate the rocking motion of Western cutting, with a straight back that’s ideal for Asian chopping. The full length of the blade can be used when cutting.”

What cook with small hands could resist such a wonderful tool?  Not this one!

I also bought a set of utensils, but more about them later.  All in all, it was a pretty good day. And I got more good news- the foundation that helped with my chemo co-pays last year is out of funds for colorectal cancer and couldn’t help again, but the patient financial counselor at the clinic had submitted my info to another foundation and they DO have funds, and approved me for co-pay assistance. What a relief that is!

A day for surgeons, shopping and seeds

I met with the colorectal surgeon today. He's   concerned more  now with the secondary liver tumor than with the rectal tumor, which has shrunk to almost nothing. We have decided not to do surgery  until we can shrink the liver tumor so it can be removed either by ablation or resection. In a way, that's a relief. I was not looking forward to having surgery and  recuperating during the beginning of gardening season!  So I 'll be  going back on chemo  the week after next.  This time, unless the oncologist changes her mind, the mixture will not contain oxaliplatin but it will contain the 5-FU and Avastin plus Fusilev.  I don't know yet how many  rounds are planned this time, will find out  that when I meet with the oncologist on  February 10. Hopefully  there will be few side effects and I'll do as well as  I did on the first round.

After  the appointment we  stopped by Publix for groceries.  I had made up   menus for the week using my two new cookbooks plus  some recipes from Jacques Pépin's More Fast Food My Way. I've been doing this for the last few weeks and  discovered it keeps me from buying ingredients, usually fresh produce, for dishes  that I  think  I might like to cook, then decide against, while the  lovely produce gets left in the crisper drawer until it's no longer fresh. Today I bought  a nice variety of fresh produce and have a definite plan to use it all.And that includes artichokes, which have intimidated me in the past, but after watching Annabel Langbein prepare  artichokes vinaigrette, I decided to give them another try.

Seeing all the fresh veggies, and learning that I  wasn't going to get any surgery for a while  gave me the impetus I needed to  get serious about setting up my seed starting  area in the greenhouse.  I did more than get it set up, though- I actually planted  some seeds! It's too early to start most seeds, since our last frost is  mid-April, and it's best to plant  eight to ten weeks before  the  last frost.  If I have to keep the plants in  the greenhouse too long before setting them out they tend to get weak and leggy so I'll wait  until next week or the week after to start most of the seeds.

But lettuce is perfect for starting now, and I can plant  successive crops for a while. Last  year  I transplanted the lettuce seedlings into long window box containers that I  could  easily move in and out of the greenhouse as the weather warranted.  I was also able to keep them going  in the heat without having them bolt or go bitter by moving them into  cooler  areas on the deck.  We had  lovely fresh lettuce   well past spring, enough to share with  neighbors!

So today I started lettuce seeds. Here's my seed starting set-up.Mine is in our little greenhouse, but it's basically the same set-up I  once used indoors with a smaller mortar tub. Now I use a  big  plastic mortar/concrete mixing tub on the  bench with a fluorescent light hung just above the box.  I fill the tub with sand, then arrange a heating cable in it, topped with more sand to keep it buried just under the surface. In the second picture I've moved some of the sand aside to show the yellow cable. This provides bottom heat the seeds  need to germinate and keeps the temperature in the seed containers at around 70°F, which the seeds seem to like.  Lettuce will germinate at a lower temperature, but  70° seems to work fine for it, too. I   keep a thermometer in the tub to monitor the temperature.

                                      

Next I  round up my containers. I use  whatever plastic containers I have on hand: margarine tubs,  mascarpone tubs, pet food  containers, etc. I punch holes in the bottom for drainage

I wash them, then disinfect them in some bleach water and let them dry. Then I fill them with horticultural grade vermiculite.  There are a number of different mediums   that can be used, but I've always had good luck with the vermiculite. I should have filled these up a little more since the vermiculite  didn't expand  with the moisture as much as I thought it would,  but hopefully  they'll be OK. When the containers are filled I  dampen the vermiculite by setting the containers in  trays filled with water. wetting the  vermiculite lets me plant the seeds without  worrying about displacing them by top watering later. While they're  soaking, I prepare my labels.

Finally, I plant  the seeds,  lightly cover them with a little more vermiculite, then set the containers in a  flat inside the mortar tub. I use flats without any drainage holes in the bottom so I can  bottom water the seedlings as they grow without disturbing them too much. Then I label the containers so I  know what's in them

and the date they were sown, and cover the mortar tub with a sheet of Plexiglas.  I move the Plexiglas off  on sunny days when the temperature in the greenhouse rises, then replace it  as the temperature drops in the evening.  With some seeds, I set the   fluorescent light   just a few inches above the flats and move it up  as the seedlings grow,  Lettuce isn't all that  picky about having light to germinate but as soon as the tiny sprouts appear they need light to grow.  They get a lot of natural light on sunny days, but I turn the fluorescent  lights on in the evening  to extend the time they're exposed to light and keep them under the lights on  cloudy days.

So  the lettuce seeds are now doing their thing and if everything goes as it should they'll  break through the vermiculite in a few days. It's always exciting to see them sprout! I can hardly wait!
 

Fellow Travelers on a Rocky Road

When Lisa Bonchek Adams used her blog and her social media accounts to chronicle her eight-year journey with the breast cancer that eventually  metastasized and  killed her, she gained admirers and followers all over the world. She was also criticized by some, including one prominent columnist who questioned the propriety of Adams’ sharing what she dubbed the “grim equivalent of deathbed selfies.”

I have also read comments from fellow cancer patients on some of the various cancer forums I frequent complain about other cancer patients (notice I am  avoiding the term “cancer victims”) who post on social network sites about their condition and treatments.  These posters are sometimes accused of posting simply to garner praise, sympathy or to capitalize on their condition in some way. Or as my daughter would put it to “play the cancer card.”

I don’t know how people feel about my posting, but as more people learned  about my diagnosis and began to ask questions, I began posting to keep friends and family  informed about what was going on, how I was doing and what  treatment I was  having, etc. I do sometimes get comments about how brave or strong I am, or how someone admires me, but that was not and is not my goal nor my intent.

 Quite frankly, when I began this cancer  adventure, I went looking for information.  Not just information on the treatments, the research behind them, the techniques, etc.  I was certainly interested in all those things too, but what I wanted was some reassurance that other people, ordinary people like me, had gone down this bumpy, rocky, dangerous road and had not fallen into the ditch or  been  set upon by demons, or worse, but had  remained  in control of their  sanity and been able to  retain their sense of  humor , their joy in living and their dignity as they lived out their lives under very difficult circumstances. 

I found what I was looking for in articles,  in forums and on blogs, including Lisa Bonchek Adams’ blog.  Many   cancer patients had written  about their fears, their hopes, their despair, their  love for their friends and families.  They helped me learn  about what to expect when I went to have a port placed in my chest before beginning chemotherapy. They warned me about some of the side effects of  that treatment: about the fatigue, the frustration and the mental fog that often envelops  us  as the  chemo kills off brain cells along with cancer cells.

This is a  journey that is different for everyone who makes it.  Everyone  reacts differently to treatment, and some  suffer  more or less than others. But knowing that it is a journey that others have made is reassuring, somehow.  There have been happy endings as people hit the  five year mark or the ten year mark of  being cancer-free, and there has been sadness as  family members post information on funeral information for those who reached the end of the road much sooner than  any of us planned.   But even in the sadness, there is  the memory of a  person who knew his or her journey was nearing the end and faced the inevitable, sometimes with anger, sometimes with fear, but often with grace and  dignity and with humor. In doing so, they  had kicked some of the rocks and obstacles out of the road making it a little smoother for those of us who travel after them. I don’t know that my posts are helping anyone who has to travel down that rocky road,  but I would like to think that I have kicked a few rocks out of the  way and made the road a little less forbidding and fearsome, a little less lonely.

Not exactly what we'd hoped for

Met with my  medical oncologist and  my radiation oncologist today and  got the results of the CT scan I had on Friday.  Instead of my metastatic liver tumor shrinking, it has grown. The  report states that  everything that showed up on the previous scan is stable except for the  liver tumor.  Which is very disappointing.   It  was 1.5cm when first discovered in May, then after 8 rounds of   aggressive chemo it shrank to 1cm. I finished up the last  FOLFOX plus Avastin treatment on September 30, had a month off to recover, then  began chemoradiation on November 16, finishing up on Dec. 30. So after 28 treatments  of radiation aimed at the rectal tumor, during which I was hooked up to a chemo pump that delivered  5-FU  twenty-four hours a day 5 days a week,  the liver tumor grew like Topsy and is now 3x2.4cm. 

Quite disappointing results, especially since the  5-FU caused nasty side effects like mouth sores and peripheral neuropathy. So  as much as I would like to say that the nasty treatment was worth it given the results, in all honesty I can't.  But now  we just have to move on and figure out what  to do next.  I meet with the colorectal surgeon on Friday to see  if an exam and possible scope of the rectal tumor shows the positive response the CT scan shows, or whether he feels we need to  go ahead with  surgery on the rectal  tumor. After that and after the oncologist and surgeon  decide on a plan, they'll  determine when we  go back to treating the  liver with another blast of chemo in order to shrink it again  before doing an ablation or a resection. The medical oncologist is concerned that we not wait too long since it does seem very chemo-sensitive and   is afraid it will continue to grow  as long as it isn't being treated.    On a  little bit of a positive note,  when the  radiation oncologist read the  scan report, he decided to pull up the actual axial images with the slices from the scan.  He says that the images are not quite as alarming as the   written report  and he  was much more optimistic after seeing them. I'm hoping his optimism is justified. 

Meanwhile, I'm still planning to  start seeds, plan a garden, keep refilling the bird feeders,  go to yoga classes, enjoy bird watching, moon gazing, cooking and finding ways to aggravate poor Mr. G.  In  other words,  do  all the things  that I normally do and still can do as long as I am able to, because, as I mentioned before, life goes on.  Until it doesn't.  So we may as well go on with it and continue the business of living instead of wasting time worrying about dying. 

Ponderings about life and death and living well

I have begun this blog post  several times, only to  delete everything I've written.  The news this week that  David Bowie, Alan Rickman and now Celine Dion's husband, René Angélil, have all died from Cancer within days of each other  is depressing enough.  But then to read in today' newspaper that a young man, full of hope and promise, from  a town just up the road was shot and killed in a robbery as he waited in line  to buy a hamburger  at a fast food restaurant is almost too much  to process.

When you have  stage IV cancer, you realize that the odds are it is going to kill you, you just don't know when.  It's sort of like waiting for the other shoe to drop.  Meanwhile you go on with life  in as normal a way as possible, because you also realize that   any of us could die  at any time, even  while waiting in line for a hamburger.  So  you   decide that you can either spend your days worrying  about dying or you can get on with the business of living. And you do that in between waiting for the next scan or test to be scheduled, the next  doctor appointment, the next treatment. But in between all those tests, appointments, treatments, some of which  sap your  energy, make you   ill, cause you to have numb  feet and fingers, there are  meals to plan, shop for and cook,   dogs and cats to  feed, walk, take to the vet, bird feeders to refill, gardens to  plant and weed,  and even toilets to scrub.  And there are sunrises and sunsets to marvel at,  birds flitting about, squirrels  scampering up tree trunks, and friends and family to talk to and interact with. 

 And life goes on.  Until it doesn't. And that's OK, because today is all we have, and  the best we can do is  live today in the best way we know how and not take it for granted.  To squeeze every drop of joy and love and life  from every day and  share  that love and  joy as best we can with those around us.  As Francis Bacon said: “We have only this moment, sparkling like a star in our hand and melting like a snowflake...” Let us live that moment well and fully.

Gut Feelings- Half Way There!

When I went back for my third chemo treatment  on  June 24th the blood tests came back with flags all over the place because my white  blood cell count was  way down. This is known as neutropenia and is not all that uncommon while on chemo. The oncologist seemed to think that an extra week would give the white cells time to build back up, so treatment was rescheduled for the next week.  Sure enough when I returned the following week, the blood test showed the counts were back up.  They weren’t up a lot, but enough to continue the chemo. 

I was also beginning to   feel the effects of yet another side effect of chemo. Researchers call it chemotherapy-induced cognitive dysfunction/impairment or cancer-therapy associated cognitive change. Those of us who have it call it chemo-brain. On the one hand, it's quite frustrating to keep experiencing memory lapses and brain farts. On the other hand, it's nice to have something to blame besides old age!  It’s as though your brain is a big, overstuffed, disorderly filing cabinet: everything is in there, but it’s in no particular order. So in the middle of a sentence, the word that was on the tip of your tongue just disappears, or you  forget the name of someone  you’ve known for years.  You have to go digging in the recesses of your brain file to find it, sometimes successfully, sometimes not. 

 We ran into the same problem of low white cell counts  when I went for  my fourth treatment. This time the three week wait hadn't helped, so  the oncologist decided I would benefit from  Neupogen shots and another week's delay.  Neupogen is known as a granulocyte colony-stimulating factor analog , which means that it is a substance that stimulates the production, maturation and activation of neutrophils (a type of white blood cell) from the bone marrow. It also causes some pretty nasty side effects, including   bone pain. I was scheduled to receive three shots over three days. When I  went in for the second shot I had mild to moderate low back pain, and the nurse told me that  many patients find that taking a Tylenol before receiving the shot  seems to help, and others have reported that an antihistamine  like Claritin works also. If only I  had known that BEFORE I  got the shot! That night I woke up with every bone in my body hurting, even my skull, which felt like it might split open.  It was horrible. I took a Tylenol and was  able eventually to go back to sleep.  Heeding the nurse's advice, I took another Tylenol before going in for the third shot.  It worked like a charm- no more bone pain! My blood test  the next week when I went in for the fourth chemo treatment showed that  my white cell counts were back up.  Both my lymphocytes and granulocytes were almost back to normal. So now I’m halfway through the  chemo! Four more to go! You can see how happy I am about that in this pic.  

The infusion chairs are pretty comfortable, but I'm so  lightweight that I need help getting mine to recline. I usually take a shawl or pashmina to put round my shoulders and the center supplies us with blankets to keep us warm- the purple fleece blanket was made by some volunteers, and I was told it is  my blanket to keep and bring back every week. We also have a good wifi connection so  we're able to use our electronic devices.  I  take my Kindle Fire so when I'm not   talking to  my infusion mates or the nurses, I can  check e-mail, play on facebook, stream movies from Amazon, Netflix or PBS, read or listen to music.

 I received three more Neupogen shots this week.  I had no bone pain, thanks to the Tylenol, and was able to attend yoga class Monday night. I  got the third shot in the series yesterday and  am hoping  everything  will be on target when I go for my fifth treatment next Wednesday.

Gut Feelings Part 7

The second chemo treatment, two weeks later went off without a hitch, and I’ve been lucky that  the usual side-effects haven’t been a problem.  The worst  side effect has been fatigue-but that’s manageable and I’m fortunate in that I’m able to   do what I can, then rest when I need to.  Some people, especially those with children or other family responsibilities don’t have that luxury, and I’m sure that adds to their stress level.

 The woman in the treatment chair next to mine was having her first chemo treatment.  She sat there with tears rolling down her face.  I couldn’t tell whether she was in pain or scared or what, probably both. The nurses tried to cheer her up, and her daughter or another relative would come back to the treatment area for a few minutes, but she would go back to the silent tears as soon as they left. I asked her if this was her first time and she opened up a little.  She told me that her husband had suffered a stroke last year and wasn’t able to do much for himself and now, in addition to having to deal with her own cancer diagnosis, not knowing how the treatment was going to affect her and her ability to care for her husband, she felt quite overwhelmed. And then she was worried about whether she’s  get nausea or be too tired to do anything and how she  could take a shower while hooked up to the pump at home. My feeling is that sitting in a chair  for three or four hours with nothing to do but watch  fluids drip into your veins gives you too much uninterrupted time to dwell on the negatives, so  I decided to keep asking her questions and answering any she asked me.  I was eventually able to get her onto some other subjects and managed to make her laugh a few times.  My treatment finished up before hers did; as I was getting hooked up to my pump getting ready to leave, she thanked me for making her laugh.  I haven’t seen her in the treatment room since then, but my schedule got messed up after that treatment, more about that later.  I hope she was able to come to terms with her situation and get some of her stress and worries relieved.

Speaking of relieving stress, I decided to take up yoga.  My first class was on June 22.  It’s quite wonderful, and the emphasis is on doing what you can do, and what you feel comfortable doing, not in trying to keep up with what everyone else is doing. Since I’ve been having   a little dizziness when I lie down or bend over, I did mostly chair yoga, but did manage a warrior pose, although I did feel like a somewhat wimpy warrior J. The breathing and relaxing meditation we did at the end of class was SO relaxing that I’m surprised I didn’t fall out of the chair.