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!
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