What happens when the evolving train wreck you have been watching turns out to be the one you are riding on?

Last Tuesday was typical of our chaotic existence. My adult son had just left to go home after coming in for a few days to visit. As most mothers do, I shed a few tears as he drove off. Then the dam burst and I began to sob, missing him terribly. Our 17 year old cat had been peeing blood over the weekend and we needed to take her to the vet as a walk in. Doug left work to take her as I had to wait for the furnace service guy to come and give us an estimate to re-insulate our heating ducts. I had planned on going into work for a few hours, but by the time I settled the cat back into the house, taken the dogs out, mostly recovered from my bout of missing my son, and finally gotten a return call from UNC hospitals about a mix up in my next two appointments, it was just about the end of the day and I just wasn’t feeling up to it. Though I really had been staying pretty calm in the midst of what was all going on with us these last months, that evening the straw finally broke the camel’s back. Several months ago I splurged and bought myself an iPhone. It become my best friend as it allowed me to check email, facebook, read news and books and I was addicted to a certain solitaire game. Because I had a history of accidents, usually involving water, with previous cell phones, I had been extra careful with this one. I use a waterproof container when I am at the dock, and since I use it to entertain myself when I am seated for a long period of time, have taken to keeping the toilet seat cover down so an accidental dropping won’t turn into a disaster. Well, between the time I lifted the seat cover and prepared to sit myself down, my precious cell phone leaped out of my hands and directly into the toilet. Shouting one of the terms for what I was planning to actually drop into the toilet, I made quick to fish it out, removed it from its cover and did the best to clean the outside hoping that it might still work. I continued shout words of frustration as I stormed into the kitchen to, thanks to some recent posts by friends on facebook, place the phone into a bag of uncooked rice. Later on my husband comes into the bedroom holding my little dog Mattie, who was nearly catatonic from the emotional upset that had permeated our usually calm house. After apologizing profusely and telling her that I was not angry at her, I hugged her and let her cuddle up on my lap as I lay in bed, my phone hopefully drying out in the rice. I was somewhat aware of an impending train wreck, but at the moment thought I was safely on the station platform hoping for a near miss.

Just as we were ready to turn off the lights and go to sleep Doug remembered that he had forgotten to go to my daughter’s apartment to feed her cats as she was away for the week. He got back around 45 minutes later and we finally fell asleep. Usually Doug gets up before 6 am and takes the dogs out and feeds everyone. However, when our oldest dog came to my side of the bed whining, I realized it was after 7 am and Doug was still sound asleep. Knowing that she doesn’t usually make demands and won’t wet inside even if she is desperate to go, I got up and took her out. When I got back Doug was up and about ready to take the other two out and feed everyone. I was sitting on the couch trying to get a piece of rice that had wedged itself inside the docking port of my iPhone and hoping that there was no permanent damage to my precious. All of the sudden Doug begins to curse and tells he me thinks he accidently gave little 12lb Rosie 50lb Trooper’s medicine. Both dogs are on thyroid medicine, Rosie .1 mg and Trooper .5 mg. We usually give them their medicines in order, Trooper first, with a dollop of butter. Since it had become so routine, we don’t normally have to think too hard and this time his hand went to Rosie first instead of Trooper. We both got upset and I tried to call the vet but they were not open yet. I called the number I have always had programmed into my phones for poison control but I got some odd recording telling me to press 1 and a text will be sent to me with some information about this phone number. I was getting frustrated and when the text came it stated that there will be a $9.95 charge for the service. I was about to scream. That was when I realized both Doug and I were not only on the front seat of the train as it barreled towards something solid and inflexible, we were the train wreck.

How much stress can two people take? When Doug’s mother passed away early last year after slowly fading away from Alzheimer’s, we thought we’d have a reprieve from stress for a while. Though he visits to her several times a week had fit nicely into our other routines, the last few months he was going every day and near the end twice every day to coax a few spoons full of food into her. Starting that summer we were under the rising cloud of possible layoffs at his place of employment. We had hoped to purchase a new car and I wanted to do some needed remodeling and repair work on the house. That was put off until we were more sure that his job wouldn’t be cut. In November we rescued a little pregnant and starving dog from the shelter and spent a lot of time and money getting her well, which, though stressful, was also very rewarding. By February the job situation had still not resolved and Doug was commuting an extra 20 minutes each way to a satellite office to work on a temporary project until a new contract could be signed that might include work for him at his original office. His new job also involved travel and he was scheduled to go to Virginia for a few days. Four days before he was to leave for that trip he woke up with a pounding in his chest and an elevated heart rate. A scary trip to the ER revealed he had gone into Atrial Fibrillation and he was now a heart patient. The local cardiologist we saw seemed more than emept and we went for a consult at UNC and was referred to a cardiologist in New Bern, only an hour away as opposed to the 2 ½ hours to UNC. He was placed on a blood thinner and was getting his blood tested every three days as his level continued to go up and down like a yo-yo. As we were adjusting to this new phase on our lives, Sarah’s 1988 Volvo and our 1993 Toyota van began to fail and we now needed two cars instead of one. We found two used cars, a 2007 Prius and a 2006 Honda for what we might have spent on a new car. I gave Sarah my old car, which was only 10 years old and still running OK at 175,000 miles. Doug spent a week in 29 Palms, California for work and was scheduled for a cardioversion to shock his heart back into rhythm when he returned. All went well with the procedure and we thought we might be in for some smooth sailing after that. Four days later, as we were just finishing up our Passover Seder with just the three of us, Doug had a stroke. Though we didn’t dodge the entire bullet, we were spared the worst of it as his stroke, though not small, only affected his speech and some sensations on his right side. He was granted short term disability at 60% of his usual pay and three months family medical leave. With a lot of hard work he made steady progress and by the middle of June was able to return to work full time, and once again we thought we were back on course for our sail. As you know, that was not to be, as by the beginning of July I had learned that my cancer had returned and by the middle of July that it had metastasized to my bones. Between repeated trips to Chapel Hill, painful tests, problems with the new medications and bouts of pain in my arm and ribs, we were dancing a fine line of sanity. But we continued to feel blessed with having each other, a lovely place to live, wonderful children and family, our beloved pets around us, and a positive attitude. What we forgot to recognize was that we were not immune to stress and ours was growing daily. Though minor, the episodes last night and this morning were warnings and we had to acknowledge that and figure out how to deal with it. Unfortunately, we are stumped. My illness is not going away, and though a very long way from where the stroke originally left him, Doug still has some speech issues and is still struggling to keep the level of blood thinner in the correct range. His temporary position is nearing its end and as of yet he has not heard if any extensions of the contract will be signed. Our older pets are showing signs of age, as is the house. I haven’t been down to see my mother since the month before Doug’s stroke and our frequent trips to Chapel Hill has depleted his already low paid time off at work. In other words, the train is speeding up and we don’t know if there are any seat belts of other protection aboard.

I have been reluctant to post this type of blog as I was afraid it would sound whiney and self pitying. However, in talking to my boss, who is also a licensed family therapist, and a good friend, she assured me that if she were in my position, not only would she offer blanket invitations to everyone she knows to attend her pity party, but it would be a command performance. So after getting that validation, I may be inclined to post a few more discourses in my blog that are less than stoic and humorous.

My First Appointment at the New NC Cancer Hospital

After another night of difficult sleep, I got up at 6:30 am so we could leave by 8 to get to my first appointment in Chapel Hill by 11. Since that appointment was at a satellite office, parking, checking in and seeing the doctor all went smoothly and we were out a little after 12 to get to the new Cancer Hospital (just across the way from the old cancer clinic building) for my 12:40 pm appointment. We arrived and parked in the usual parking garage and took the ramp to the front door of the new building with a little time to spare.

Walking into the new hospital is like walking into a posh new hotel with its gorgeous and spacious lobby. We managed to find the reception desk where we were given a number and instructed to watch the huge TV screen around the corner. Immediately we saw our number flashing and we went to look for the door with the flashing light above it to check in. That also went fairly smoothly. Then we were directed to go to the second floor to the Hematology/Oncology desk, only to be redirected to the lab further on down the way. No one was at that desk but there were directions to lay my paperwork in the tray on the desk and have a seat. Finally someone come out, picked up several files and called three names, including mine. We were all lead into the lab where there are a line of “stations” open front and back. We were told to look at the number circled on the top of our paperwork and go to the corresponding station. Now, in the old building the lab was in a room across from the waiting area and the lab tech sat in a chair in front of your seat. She always had a few kind words as she readied her needles and your arm. Having been a medical paraprofessional at one time, and having way too much experience as a patient or loved one of a patient, I have strong ideas of how medical staff should conduct themselves. First off, we come in sick, or scared, or unsure of what is and will be expected of us. Many times we have rushed to get to an appointment on time only to wait what can feel like, if not actually, hours to be called into the exam room (my record was 4 hours at a local doctor here in Jacksonville). You expect that the staff dealing with you knows who you are and why you are there. You expect professionalism and you expect to be the center of that person’s attention. It really doesn’t feel very good when a staff person acts as if you coming in for the service they provide is an annoyance to them or that they want to be anywhere else but there with you at that moment (since usually you feel like you’d rather be anywhere else but there at that moment). Then if they don’t have everything prepared for your procedure and need to go get something else and they walk slower than a snail making its way up a three story drain pipe, you might feel the littlest bit annoyed, especially if you are past your original appointment time and you have another appointment close after that one. Now, in the past, if you were having an infusion (chemotherapy) after your appointment, they used to put in a catheter to draw the blood and leave it in so you didn’t have to be stuck more than once. I understand policies change, and since the hospital has only been open for two weeks, the lab tech should know that someone coming in for the first time will not be aware of any new policies, am I correct? Well, when I asked if they were going to put the catheter in she said “no.” Just “no”, not, ‘we don’t do that anymore,’ or ‘there is a new policy,’ just “no.” So I said “but I’m having an infusion, will I have to be stuck twice?” “Yes” she answered. Not ‘we have a new policy,’ not ‘I apologize but we can’t do that here anymore,’ just “yes.” I do grant that she got me on one stick, but it hurt. Could be that my heightened state of annoyance caused me to feel the pain more, or maybe she was just not concerned with doing in a way that it was less painful. I can only guess.

So, that being completed, we went over to the first desk we had approached and were told to take a seat. It was now after 1 pm. I overheard someone behind me complain that her appointment had been at 11 am and she had still not been seen. Well, being an old hand at cancer visits, I was used to waiting. I also knew that my infusion appointment, which was scheduled at 2 pm, was flexible as long as I got there before they closed. I did hear the woman say that she heard that “Dr. Carey was good, but this was ridiculous waiting this long.” I didn’t want to say something, but I thought 'yes, she is that good and well worth waiting for.' I also know that she doesn’t slack off and that she will spend as much time with a patient or that patient’s loved one as they need to have things explained or be reassured in a scary and troubling time. So I am prepared to wait as I know she gave me the time when I needed it and I wasn’t about to begrudge that time to anyone else. The only problem for us is that we had not eaten since early that morning and we knew it would be a while until were going to be able to grab a bite. But again, it was something we were used to, since you don’t always get lunch breaks when you are fighting cancer. We were finally called back and put into a nice new spacious room (compared to the old Gravely Building) with a love seat instead of the two hard metal chairs we had been used to. Now that made sense. Many times I needed to sit and have Doug put his arm around me as we waited for news we usually knew wouldn’t be good, but couldn’t easily because the chairs didn’t allow them to get that close together. Wow, someone who decorated these rooms knew what cancer patients needed! As we sat and waited, and waited some more, the nurse practitioner stopped in to apologize for the wait, it had been one of those day and they were slammed. When Dr. Carey arrived she also apologized saying that a mix up at registration didn’t send any one up to clinic until after 9:30 and they were suppose to start at 8. She looked frazzled for a moment but then sat down and all of her attention was directed fully towards me.

Here is the issue. In 2002 after four rounds of chemotherapy, my periods stopped. Not an unpleasant side effect. I had several episodes of break through bleeding and each time had an endometrial biopsy to make sure there wasn’t anything sinister going on in that uterus of mine. **WARNING: EXPLICIT DESCRIPTION*** An endometrial biopsy begins with the usual cold speculum (for unmarried males reading this, imagine a giant duck bill, no duck, just the bill) being inserted into your vagina and expanded. Then a long tapered plastic thingy is inserted and the tip placed into and through your cervix to dilate it. I wouldn’t say it felt as bad a trying to push an eight pound baby out of your womb, but it did caused cramps. Doesn’t it seem that men complain bitterly about the one finger physical exam while we grin and bear untold invasions of our sensitive private parts? Anyway, after the cervix is dilated some kind of scraper thing (I choose not to look and see what was being stuck up there) was inserted and according to my impression, scored along the wall of my uterus like someone scraping sun dried mud off the patio floor. ****OK DESCRIPTION OVER****
The third time I had to have one of these biopsies, I suggested that maybe they should just take that old bothersome uterus out, it had done its job well in growing my two children and I wasn’t going to use it anymore. However, they preformed a D&C (a more extensive biopsy procedure done under anesthesia), and I had a bit of a reaction to it. Since the biopsy results were clear, I decided to just let it be and figure the bleeding was just a normal part of my body causing me trouble. However, after starting the hormonal treatment last month (a daily pill that keeps any and all estrogen from connecting to anything in my body), I once again started to bleed. When I called the oncologist about this, she said to stop the aromasin, that I may not actually have been in menopause. She explained that as my body senses the lack of estrogen, my brain alerts my ovaries to make more. Ovaries in true menopause are long shut down and requests to produce estrogen fall on non-responsive organs. However, if any bit of the ovary is still active, maybe just resting, it will begin produce estrogen. For me, estrogen is the absolute enemy. It is what feeds and grows my cancer, although it also keeps my skin nicely elastic and other parts lubricated and expandable. Cancer verses smooth, unwrinkled skin and more comfortable sex, hum which one to choose….. My doctor decided to scrap the aromasin pill and go for another treatment that can be used for pre and post menopausal and will do the trick just as well. It is given as a shot in the rear end and I can get it along with my Zometa infusions once a month. Oh boy!

For the last couple of weeks I had been having deep throbbing pain in my left upper arm. She explained that when they first start treatments the cancer can flare up, so the unspecified spot in my arm has probably expanded. Again, oh boy. They will be doing another set of “staging” tests to see where my cancer is in a couple of months, so we’ll see if it has gotten into more places or if it has behaved itself and stayed small or even gone dormant. So until then I can only wait and guess.

When I first had chemotherapy seven years ago, the infusion room was in the basement of the Gravely Building. It was small and cramped and full of people sitting in chairs with tubes hooked up dripping all kinds of chemicals into their veins. I remember a bag leaking and the nurses actually donned hazard suits, gloves and masks to clean it up, and that was what was dripping into my body! Chemo is usually infused over several hours, so by the time you got seated, hooked up, pre-meds ordered and taken and the chemo actually started, you could spend 5 or 6 hours sitting there. Volunteers walked around offering crackers, soda and warm blankets and a straight chair was next to your “lounger” for a loved one or friend. Several times the spot next to me was occupied with a resident of one of the local jails or prisons, so the patient was handcuffed to the chair and an armed guard sat in the chair next to him or her. There are many reasons a person might be incarcerated, and I’m not going to get into prisoner verses victims’ rights, but knowing how both that prisoner and I were going to be feeling in a few hours after undergoing chemo, all I could think about was how horrible to go back to a cold jail cell with no one to really care for you while you heave your guts out and suffer the after effects of this treatment. No one deserves to have cancer. Of course I might have some envy of having a toilet right next to the bed as I contemplated the distance between mine and bed I was laying in.

Anyway, the new infusion area was nice and spacious, with big windows, real loungers and individual TV sets. As always, the infusion nurses were great. I sent Doug down to get himself something to eat and they hooked me up and started my infusion. The actual time the zometa takes to go in is 17 minutes, but by the time they hook you up, let the saline run for a little while and order the meds, it all takes about an hour. Better than the five hours it took for my original chemotherapy. When Doug returned he brought a plate of hummus and baby carrots, the only thing left in the little café down stairs. We woofed that down and then it was time to remove the IV and give me my Faslodex injection. As we drew the curtain around my little space, the nurse assured me that the big glass window was too dark on the outside for anyone to see in. “After giving birth and having cancer, all modesty is gone anyway” I replied. The woman in the chair next to me laugh and said “amen to that!” Yep, cancer women know how it is!!

So I dropped my draws and she alcohols a spot on each ‘cheek’ before sticking a long needle in one side. THEN she tells me that the liquid is very thick and it takes a while to push it in. Being my usual flippant self I said “Cancer is sure a pain in the ass,” and the nurse, lady in the next chair and I all said at the same time “literally!” After what seemed like many, many minutes, she was done with the first one and we started on the second injection. I think after this I will only be getting one shot, or at least I sure hope so! After she finished with that one she taped two wads of gauze to the injection sites and I pulled up my pants, ready to head off. My head started to spin a little and I said I might should sit for a minute. Then the oddest thing happened. All of the sudden my ears clogged up. I could hear everyone talking but it sounded like it does when your ears are under water, or stuffed with cotton. The nurse seemed puzzled and said she never heard of that happening before. She called the doctor, took my blood pressure and temperature, which were both normal. Then just as suddenly as it started, it lifted and all sounds retuned to my ears loud and clear. After having me sit for a few more minutes to make sure I was OK, Doug and I were allowed to leave, it was just after 5:30 pm

We stopped for some supper and I wanted to stop in at the Healthy Back store next door, one of my favorite places to see what is new and innovative. The clerk suggested we try out the new massage chairs. I got into the really space age looking one and Doug got into the one next to it. After a few minutes he got up saying it wasn’t very comfortable. Well, mine was AMAZING. It did a series of different actions hitting every part of my body, including massaging my hands and feet. I was in heaven. I told the clerk I wasn’t sure if I wanted to know how much it costs and I was right, I didn’t want to know. On sale it was $6495. However, with the way this chair felt, it was one of only a few really expensive things that I felt was actually worth the price listed, not that we were going to purchase one, but still. I made Doug try it next. He normally doesn’t like things like this, but after it started up I heard him say “wow!” I got into another of the massage chairs as he finished the complete series of full body massages in the ‘Wow’ chair. The clerk was really nice and I told her that I had to come up once a month for cancer treatments and she said “well, stop in anytime on your way home and sit in our chairs.” We finally got home around 11:30 pm; it had been a very long day!

Twaddle

How I wish I were a real writer. So many times I see something that may be ordinary, but I experience it as something so wonderful that I want to convey that experience to others, but I can’t always translate it into words. Yesterday, as I was sitting on my dock watching the turtles and fish, I had such a strong desire to paint it all with words so that you can see what I saw. I wanted to write about the grace of the turtle as it glides through the water, the curiosity of one as it eyes me, swimming closer to check out this odd creature sitting on top of the water, or others that dive down as soon as our eyes meet. To document the antics of fish as they take the food, some slow and easy, others attacking and fleeing as if they know that food put out by humans maybe attached to long strings that take them away. I want you to feel the cool breeze blowing across my arm, hear the music of nature, be filled with the emotions that envelope my mind as I look around me. I want to write of the colors of the sky and the water. I especially want to describe the water. The little ripple currents, the reflections of the sky, the bubbles trailing up from the bottom, so you can see, and experience it just as I do.

I just don’t know the words that can evoke what I feel inside. How do I describe the feeling of joy, wonder and enrichment that permeates my soul as I sit on the dock, eyes glued to the activity around me that I cannot predict or control? What words would let you see through my eyes as I watch a teeny tiny lizard scamper along the leaves next to me, to let you feel the wonder of the web spun by the giant garden spider in my carport, to feel the contentment of two little dogs cuddled on either side of me?

I want you to know the expanse of emotions I experience every day; the good things along with the fear and pain of living with cancer. I can put into simple words some of the things in my life, how grateful I feel for all I’ve had and how disappointed I am that there are things I will never have or do. I can describe some incidents, but can it give you a true sense of the fullness of the emotions connected to these experiences? Real writers could describe on paper (or on screen) the joy and pain, both physical and emotional, that curses through my body so that any insights I realize you will realize also. A real writer could gift to the reader a fuller experience. Let you really feel the joy, see the wonder and, yes, live the fear. But when I try to put it down, I get lost in the words. What I see in my mind’s eye, or feel in my heart just doesn’t spell out. It is not that I want to make you feel sorry for me, or see some kind of strength in living with cancer, it is just I don’t want these experiences, these insights, to lay alone in my head. Of course what I perceive as an astounding insight into the universe we all share may simply be twaddle that means nothing to anyone but me. (I did learn a new word: twaddle, meaning insignificant nonsense as found in Merriam-Webster Online Dictionary) But even if twaddle, a real writer could put it in a way so that it is easy to make sense of and give it meaning… So since it is me writing this, and not a real writer, your job is harder as you muddle through and try to find the meaning in my tangle of words and sentences. For that, I apologize, but for the twaddle, well, indulge me this one pretense at offering some words of value as I share my thoughts and experiences.