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!

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.