Join me as I continue my journey through life that includes stops in the land of cancer not once, but twice! Laugh and cry with me, but most important, learn how love is what it is all about!
The Miracle of the Shoes
The old adage of waiting for the other shoe to drop was one used by a bunch of us in an email support group years ago where, because of difficulties outside of our control, we seemed to get hit with crisis’s all too often without any warning.
In the last year or so I’ve been the beneficiary of quite a number of shoes. You’d think they would have to run out, or at least get to the slipper section over time, however with every shoe that drops, a new pair miraculously appears precariously positioned over my head, just high enough to give a good wallop when it too falls, and we are talking about good solid footwear.
I spent so much time this fall worrying about dying, I forgot about living! So, with my recent staging scans reporting that the cancer is holding steady (not shrinking, but not growing), it is time for me to crawl out from under the cover of depression and doom and face the world head-on once again.
To prevent me from seeing my own shadow and diving right back under the covers, I decided to make some changes in my life. First off I’ve decided to retire from the work force. It wasn’t as easy a decision to make as it might seem. Since I was only working part time, the loss of my income won’t be a dramatic change. However it did provide some extra spending money so I didn’t feel so guilty when I got carried away with some online shopping opportunities and it could be a problem as our medical bills continue to grow. Another issue is that I will miss interacting with my boss and the other people I see at work. However, with the monthly trips to Chapel Hill and the times I just don’t feel well, I wasn’t able to give the extra time to get everything done at work. Though it was a 10 hour a week job, most weeks I spent 15 or 20 hours which I could take as comp when things were not so busy. But I have not been putting in the extra hours lately and I seemed to be constantly playing catch up and just couldn’t get things done the way I like them. The feeling I wasn’t doing the best job I can do, and dealing with the other issues in my life right now, I decided that it was time to let go of this particular stressor. So, as soon as Missi can find a replacement, and I can get them trained in all the “procedures” I developed trying to automate the office somewhat, I will join the ranks of the unemployed. Though I will get unused vacation pay, I will lose all the accumulated sick leave, which, since I had so much comp time, I rarely used, is over 200 hours. That is almost a half a year! Unfortunately I can’t even donate them to another state employee who may be in need… Oh well. Then there is the conundrum of having the free time to do more things that I want to do but then not having the funds to do them.
The next issue I need to face is doing some work around the house. The bathrooms need upgrading, the kitchen counter needs resurfacing, the basement needs waterproofing and painting. About a year and a half ago I played with a design for a wonderful master bedroom and bath that I’d love to live in. I put that idea away when employment concerns and then health issues made a big remodel seem impossible. When I thought about revisiting the idea, a few things came up. Number one of course is finances. Whatever we do around the house, it needs to add to the real estate value but not over-value the house. I also don’t want to totally deplete the money we had put aside several years ago. Number two is how much disruption and mess I can tolerate while the work is being done. I’ve lived through several remodels, and they are horrible. In the past they have mostly been done in preparation for selling the houses, which was even worse since I wasn’t going to be enjoying the fruits of my misery. So, how much and how long am I willing to live in a construction zone? I do have several options: I can give up the dream of a luxurious and spacious bed and bath and just do a simple superficial update in the bathrooms. This will be the most cost effective and the time involved a lot less. But it leaves us with a tiny master bedroom, tight closet space and a teeny, tiny bathroom. Not a great selling point in the future and not so much fun right now. Water proofing the basement will still be a costly and disruptive process, but one we don’t really have an appropriate alternative. What I need is one of those shows that come in and do the work in two days. However, I know once we get started, there will be more issues brought up, silly things like getting the electrical up to code, re-wrapping the heating ducts that the hell kitten (also known as the seemingly permanent foster cat Jessie, that’s another story) has ripped up, and fixing all the leaks that bring rain water into the house from the chimney, windows and a few other places. Doug and I are great at just putting up with stuff like leaks, inadequate wiring and cramped spaces, but them get forced to correct them when it gets time to sell a house.
Wow, just reading what I wrote, I see myself heading back to that blanket… damn, all the pets have gotten there first and there is no more room for me…. Well, hello world……
So I was thinking, I’m really sick of lemonade. Life has not been very nice to me this year and I don’t think I need to find the good in it, right? I mean, lemonade may taste good for a glass or two. But squeezing all those lemons is the putts. The juice gets in your eyes and stings any cuts on your hands. Then you have all these squeezed out lemon halves to deal with along with all the sugar that’s got all over your counter top. Sometimes it is easier to say life sucks and that’s it!
Well, tomorrow is a big day. We head back up to UNC for some blood work, a bone scan, chest,abdomen and pelvis CT and a head MRI. But the fun part is we are going to have dinner with some friends from Ossining, NY whom we have not seen since 1991! It's great when we can cross paths with old friends!
Then we wait, at least until Thursday when we go back up to Chapel Hill to see my doctor and get the test results. These tests are important because they will show how well the treatment I've been on for the last 4 months are working. Best scenario: all bone mets have disappeared or at least remained in just the one spot and not gotten any bigger. Worst: more spots and in places other than the bone.
What would you expect when you walk into a roomful of women with breast cancer? A bunch of older, morose women? Lots of anger, tears and pitiful faces? Well, you haven’t been around enough women with breast cancer. I recently attended a three day yoga retreat put on by the Libby Ross Foundation (http://www.thelibbyrossfoundation.com/) for women with breast cancer. Though most refer to themselves as survivors, I prefer to refer to us as warrior queens, women of exquisite strength and grace!
My friend Connie had attended one of these retreats last year and insisted I had to go, even though she would be unable to go with me. My first inclination when walking into a group of strangers is to mentally pigeon hole and label the different types of people and to see with whom I have the most in common. At first glance this was not easy as there were such a variety of women there, young, old and in-between. Some had outward signs that they were dealing with cancer: wigs, head scarves, recently returning hair. Some looked like they were tri-athlete competitors; some looked like the average every day woman you see on the street. One thing I did notice about most of the women there: their smiles. The retreat promised three days of pampering and yoga, but as we introduced ourselves to the group there was more of a commonality that we were there to connect with other women battling this disease and to give and receive strength from the bond that had unfortunately united all of us.
In the capable hands of the two instructors, who both have a connection to breast cancer, we breathed, stretched, moved and breathed some more. There was no coddling and pitying of our situations, just adaptations to our unique abilities. We were encouraged and sometimes pushed to learn what we were capable of, not what we were not. We were also taught how to calm and restore our energies, spirits and sense of well being. Though most of the time was spent learning and practicing the art of yoga, during meals and free time we could get to know each other and learn who everyone was, how breast cancer had affected us, who each of us were before and after our diagnosis’s.
Personally, what I got from each of my new friends and sisters varied with each woman I got to know. Some of the women were so energetic and joyful that I could feel my own energy and joy grow with each moment I spent with them. There were several women whose constant giggles embedded in me a lighter sense of my own struggles and I loved them for that. Some women, who were more on the spiritual side, bestowed to me a calmness and an inner connection to my own spirit and hope. Others, whose inner strength radiated outward, helped me find my own strength. Even those whose illness made them appear more vulnerable, seemed to allow me, and others, to feel free to express our own fears and not feel ashamed or weakened by them.
Though I’ve classified some of these women by certain attributes, the real truth is that each had a little bit of the spiritual, vulnerable, strong, joyful, and, especially when encouraged by our yoga instructors, energetic side of them! I think we instinctively knew what someone else needed and gave that part of ourselves to encourage what someone else needed at the moment of our interaction.
Our three hosts, Lori, Gabby and Kathryn, made it their mission to make sure that each and everyone felt relaxed, papered and cared for. The facilities were wonderful, the food exquisite and the little treats and goodies were all very much appreciated. I can’t thank them enough for sponsoring this event where all but transportation and accommodations were provided by the foundation. Yet, each time we thanked them, they insisted on thanking us for attending. These women gave their all and have lived up to the foundation’s mission and in doing so honored Lori’s mother, the name sake and inspiration of the foundation!
Before the retreat I stopped in Savannah to spend a few days visiting my mother. Due to her Alzheimer’s I felt I could not be completely frank with her about how I felt and how I was doing. It was torture. I don’t know if it was because she could not remember that I had told her of the cancer’s return and I didn’t think it was fair to constantly remind her of that, or because she taught me so well that I felt guilty lying to her each time she asked me how I was doing. I felt an acute need for her to be my mother, to put her arms around me and comfort me, but I couldn’t ask her for that, and it hurt. None of her children live nearby, but because of circumstances, I was able to visit more often. We are very similar and even as she lost much of whom she had once been, visiting her had always been pleasurable. She began to lean on me and I enjoyed doing things to help her, even though her stubbornness sometimes made doing so extremely frustrating. I hate that I cannot be there for her as my treatments and health make it increasingly more difficult. My siblings have stepped up, but she continues to let me know how much she misses me when I’m not there. So I have lost the ability to have the mother I need and be the caretaker I chose to become.
On a lighter note, here is an interesting fact I learned this weekend: Saline implants glow in the dark in a disco setting!
Sorry for my silence, I find that I can’t seem, or don’t want to, write when I am depressed, and depression overtook me for a few weeks. Part of it was dealing with some chronic pain, which may or may not be related to my cancer. Part of it has been dealing with doctor’s offices, insurance companies and the everyday hassles of managing a house, a job and a family. Our home owners insurance was raised by $1000 due to our area being prone to storms. However, we haven’t had a big one in the 6 years we’ve been living here and I come to find out that they have lumped us in with the vacation beach areas. We don’t have a vacation home, but we get to share in their financial risk pool. Then our medical insurance raised our co-pays and deductibles. What we pay for our medical insurance and my co-pays just for my monthly treatments will come out to over $11,000 for the year, out of our pocket. Our yearly pay increase doesn’t come close to that. That doesn’t even count our pharmacy costs and any special tests I will have to see where my cancer is going. Nor does that count Doug’s expenses, which include a $15 charge every time he has to call into his cardiologist because his INR is too low or too high and they tell him how to adjust his Coumadin dosage. Insurance will not cover that at all. However, without insurance, just my monthly treatments alone would costs over $60,000 a year. Not that the insurance company pays that, they get discounted rates so they pay about $36,000.
***warning: political opinion*** If you don’t understand the need for Health Care Reform, think about this. We pay $8000 a year for our insurance premium, with Doug’s employer paying, I presume, a good bit more. The insurance company pays out their discounted rate of $36,000 (but remember that if a policy holder doesn’t get sick, they and their employer still pay the premiums, and the insurance company adds that money to their profit.). However, for people without health insurance, they would pay the entire $60,000, unless of course they are indigent, then they possibly get free, but maybe substandard, care that I subsidize both in my insurance premiums and my co-pays and co-insurance, or when I have to pay it all out of pocket because I haven’t used up all of my assets to become indigent yet. There is something wrong with this picture.
Taking a look at the actual bill for my treatments, I think that the office visit charge for my oncologist is very reasonable at $136 considering her years of training, continued research, knowledgeable treatment considerations and the personal care she gives me and all her patients. The cost of the care for the nurses and medical staff are also well deserved. I do question the extreme cost of the medications I receive, which is approximately 90% of the $5000 monthly treatments I get. Yes, over $4500 goes for two medications I get. I would love to know the actual costs for manufacturing them. I understand we are paying for the research and development, but if there are just 1000 other people on these medications (and I’m sure there are many, many more across the US) would $54,000,000 still not cover the cost of research and development?
When I let go of my concerns about the financial end of things, I start to contemplate my future. I think of the things I always thought I would do ‘someday’ and realize that someday will never happen. Between all the medical appointments, feeling sick and expenses, much of these dreams have been relegated to wishful thinking. Even goals to fix up my house have been tucked away into my little secret box of unessential wishes. Even with a positive outcome, I don’t know how the job market may influence our place of residence and our planned timetable for retirement is now totally derailed. I weight hoping for a good prognosis and a long time being around, thus needing to conserve funds, with planning to live each day to the fullest and realizing some of my wishes in the time I have left. But most of all, I think it is the uncertainty that bothers me the most.
When I first had cancer I was told, don’t be pessimistic, many people survive breast cancer now days. Then when it returned and metastasized, I was told, yes, this is terminal, but with new treatments, you can live with this for a long time. Now, how am I going to be strong when I don’t know how long I’ll have to be living this way? I’m sure I could do it for a few months, suck in the pain and fear, settle my affairs and put on a brave front. But, if I’m going to be terminal for twenty years, that makes it a lot more difficult.
How do I figure out what future to plan for? Do I just go on like before? How do I incorporate having stage IV cancer with planning for retirement, grandchildren, long wanted trips? What do I tell myself? Then, how do I prepare for the end? I mean, my planning will be much different if I’m going to die in a few years as opposed to a couple of decades. Sure, anyone can die tomorrow, but when you have cancer, the reality of it smacks you in the face every minute of every day.
One more bit of grumbling before I stop my ranting for today. Recently I’ve been paying more attention to tributes to people who have died of cancer. Almost always you read how this person was strong, fought a brave battle, never complained and lived each day to the fullest, right up to the end. I’ve known some people like that. And yes, like everyone else I have admired them for it. However, sometimes I feel it is just one more impossible standard to try to live up to. I’m not saying that we should memorialize our loved ones and friends by including that they were sometimes whiny, complaining, and demanding as I’m sure everyone gets to be one time or another when fighting this disease. I just wish that I didn’t make myself feel like I have to be as stoic, strong, and wonderful as I think the others were. And yes, I know this is of my own making, the quiet hero we all would like to see ourselves as. I guess I’m not going to be that quiet hero, I don’t think it is in my nature. But hopefully I can still inspire those of you reading this to continue to love, laugh and cry with me and to appreciate every day you can take a breath in and breathe it back out.
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.
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.
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!
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.
I was laying there in the exam room with a doctor sticking needles into me, preparing to send pluses of electricity through my body and I thought “what else can be done to my poor body.” No, this wasn’t another biopsy looking for more cancer cells, nor an infusion aimed at killing them, or even an emergency life-saving procedure. It was an acupuncture treatment aimed at my immune and endocrine system hoping to aid my body in the fight against my cancer cells and other maladies my body is dealing with. You see, several years ago, my daughter and I went to a doctor at a local “doc-in-a-box.” Instead of rushing us through, she actually sat down and listened to us. We followed when she eventually left and started her own practice. Recently she became certified in acupuncture, and as sort of an internship, offers it free to her patients. Though I can be skeptical, I am also open to thinking outside of the box and decided to give it a try. The first treatment was OK, but I didn’t get the mind relaxing benefit I had expected and actually felt no different during or after. Since I learned that my cancer had returned, I have been waking up every morning feeling drained, nauseous and overall, yucky. Yesterday was no exception. In fact, I had been feeling especially bad. I was more depressed than usual, I needed to return to work but really did not want to, and felt like my GI system was planning an all out attack on me. All I wanted to do was crawl in bed and take a nap. I managed to get through the day, even spending a few hours at work. By the time I got to my doctor’s office, I figured if nothing else, a few minutes to just lie on a table with nothing to do on my part would be nice.
The room was filled with the soulful sound of flutes and a steady drum beat, candles flickered, and as I lay on the table I could feel myself relaxing a bit. The insertion of the needles isn’t too bad. You sometimes feel a slight pinch and if she got it in just the right spot, you can feel sort of a mild ache. Needles were placed at specific points on my feet, legs, hands and elbows. This time she added a few on my abdomen. Those didn’t hurt (fat can be useful for something!) but as I have always been really ticklish, I tended to jump each time she placed one in. After all of the needles were in (I purposely didn’t count how many there were, I figured I didn’t need to think about being a porcupine), she lite a sacred Egyptian aromatic herb, called moxa, and held it by each needle to bring heat to that point. It actually felt pretty good. Then she hooked some of the needles to a small electrical stimulator and turned it up as far as I could tolerate it. I could take it where it made the needles pulse slightly; I didn’t like it when they tingled more intensely! After placing one of those space-age silver blankets over me (yes, that didn’t fit into the zen like feel of the procedure, but it did keep me toasty warm) I was left to relax and let the energy, or chi, of my body converge through the selected spots and adjust and alter my body's energy flow into healthier patterns. Though she could have used a better choice of words, she left saying she would leave me to “cook” for a while and then be back in. I can’t say I zoned out into a mind clearing meditative state, however I did find I could relax and let the music flow through my mind instead of all the thoughts that had been running amuck around in there. By the time she returned and removed all the needles, I was feeling more relaxed than I had in a while.
As luck would have it, her husband, who is a licensed massage therapist and also doing a type of internship, was there and she offered me a free massage after my treatment. Since I am still a little worried about my bones being weakened by the cancer, I opted just to have my feet and hands massaged. If all the pain and suffering I had been dealing with these past few months were necessary just in order to get to that few moments of having my feet and hands massaged, I would happily do it all over again! It was, literally, just what the doctor ordered. When I left her office my body felt like rubber: relaxed and mushy.
Now, here is the thing, I woke up this morning and felt something was wrong. I didn’t feel quite right. When I sat for a moment to observe what my body was experiencing, I realized what was wrong….I felt good! I didn’t have that familiar nauseous, mildly uncomfortable feeling I was so used to. I felt energetic and was looking forward to getting up and starting the day, an unfamiliar sensation in recent weeks! Whether it was the acupuncture, the massage or just my body finally shaking off some virus or medicine side effect, I’ll never know. I do know that I am going to continue the acupuncture treatments and hope that the massage continues to be available also! You know, I could learn to like this new feeling of well being!
Perspective comes with time and, paired with wisdom, can do a lot for a person. Here I am, five months beyond experiencing the scariest moment of my life, watching my husband suffering a stroke, six weeks past learning that, not only has my cancer returned, but has metastasized and six days into a voluntary quarantine for swine flu, and I’m OK. In fact I’m better than OK, I’m feeling normal and am looking towards the future with normal optimism and fear, not unrealistic optimism or agonizing fear.
Yes, our lives and plans for our future have had to be adjusted, but don’t we always have to continually change course as we navigate along in life? Sure, more uncomfortable tests and treatments are now a certainty and will be a constant in my life. Yes, my husband has to constantly check his blood thinner level and adjust it accordingly in order to prevent another, possibly catastrophic, stroke from occurring, and yes, our lives will certainly be shortened, but when we do get to that end is as much a mystery today as it was before and as it is for most beings. So, sitting months, weeks and days from the initial acknowledgment of our situation, perspective has eased the initial panic that is a given for such instances. Wisdom, which has come to me not from having done well in the past, but from where I have really sucked and have had to learn to do better, is what is fueling my acceptance of our situation and my determination to continue to keep my life one worth living. In other words, ain’t much I can do about it, so I might as well find something nice about it!
Here is another thing I have learned: it is nice when you like your partner as well as love him. Doug and I have had LOTS of togetherness lately. I stayed home to take care of him after his stroke, we have spent lots of time together driving back and forth to Chapel Hill and in waiting rooms, and we have been in voluntary quarantine for the last 6 days due to swine flu. Luckily our house is large enough for us to find alone space, our pets are silly enough to keep us entertained, cable has On Demand movies, and we’ve learned to not take the other’s crankiness personally! The only down side to all this time spent together is we’ve used up almost all of our paid time off and still need to take off at least once a month for my treatments from now on. So, my determination to actually take a real vacation together, our first, may be put back on hold. Heck, what really is the difference between hanging together, let’s say, at the Grand Canyon, and hanging out together at home like we’ve been doing? I mean really, we’ve seen pictures of the canyon, how much better could it really be in person? And, gee, a few nights in the mountains at a cozy little cabin, dinning at a romantic lakeside bistro, and hikes along trails full of natural beauty, breathing in fresh mountain air? Really, what fun would that be? And of course, if we don’t get health reform passed, we’ll need all that money we don’t spend on a trip to pay for all the medical bills insurance won’t cover because it doesn’t have to, if we still have health insurance at all once they figure out all the trouble we cause by having strokes and getting cancer…
So, stroke, cancer and swine flu, what could be next?
I was up early to take the big dog back to the groomers as everyone, dog included, were too tired to finish at the last grooming appointment. Just as I take a left turn out of my neighborhood, I see a bright green anole (lizard) crawl up from the windshield wiper onto my windshield. Holding on for dear life, he gives me a look like “what the heck are you doing?” So I pull over into a shopping center parking lot and get out. Now, my daughter would have caught the little critter in her hand and safely removed him to a nice tree or bush. I want to spare his life but I’m not brave enough to actually catch him in my bare hand. Now, it is not that I am afraid he will bite me; I just don’t do well with things that move really fast and wiggle! So I shooed him off the car, and of course, he made a b-line for what he thought was the safety of the shade under my car. I tried to get him to skedaddle over to the grass, but he wasn’t moving. So I ascertained his was right in the middle between my tires, and I carefully and slowly backed up and left him sitting in the middle of the parking lot.
I delivered Trooper to the groomers and on my way back home stopped to see if Mr. Daredevil Anole had found a nice shady spot to call his own. Well, he is still sitting in the middle of the parking lot. He’s not squished, so I didn’t run over him, he just looked stunned to be left in that strange and barren spot. So I stop my car and get a small container with the hopes of catching him and transporting him back home to return to familiar places. He was having no part of me and immediately ran to the shade, which unfortunately, was under my car. Not being 25 any longer getting down to look under my car was no easy feat, but I did it anyway. I tried to shoo him out hoping to be able to catch him in my little plastic shoe box (hum, shoe box became a shoo box as I waved it under the carriage of my car, how funny). Well, he was having none of it. When I went around to the other side and looked under the car he was gone. Now, I looked around and saw no sign that he had actually moved from under the car, so my only guess is that he had found a place to jump to ON the car. The choices were somewhere on the under carriage, or, onto one of the tires. Gees, I was trying to save his life and now he may have gone to the one place that affords him no safety at all. What was I suppose to do? So I got back in my car hoping that the engine would scare him out and away from the car. Now, you have learned that I am an animal lover and might have guessed that I am an environmentalist, so of course I drive a Prius, a hybrid electric car. There is no engine noise when I am running on the battery as I was at that moment. So all I could do was very slowly back up hoping that he would find the rolling tire a little too unsteady for his taste and jump to safety. Well, I didn’t see him running madly from the moving car, and fortunately I didn’t see a squishes lizard on the pavement in front of me, so I guess he found a nice place to hitch a ride back home on, or so I hope!
In the mean time I am having some unusual symptoms and I called the oncology nurse practitioner this morning. Seems that being medically induced into menopause by chemotherapy is not really menopause…. so I might be going through menopause, AGAIN. I get to not only experience some not so wonderful things in my life, but I get to do them more than once. What next, puberty and all the fun social experiences I had with that one more time?
Wow, what a great time to have cancer…ok, no time is a great time, but believe me this is a great improvement over the old space where I was treated the first time! I used to imagine how to design a state of the art infusion center (where the chemotherapy is given) and then I’d donate it to UNC if I ever won the lottery! Well, I didn’t win the lottery, but UNC cancer patients all did! The hospital opens August 17th and my next appointment is September 3rd so I get to use the new facility right away!!
Some interesting side effects of either the Zometa or the Aromisine is that I’m hot and cold all at the same time. Not hot in part of my body and cold in another, I’ve been like that for years (kick cover off feet, pull tight around shoulders, back on to the feet, off shoulders, repeat every few minutes….) but I was trying to isolate the cold and hot and couldn’t, it was both at the same time in all parts of my body. Really, really odd. Also my hands and feet hurt. You know when your hands or feet are really cold and it hurts right down to the bones? Well it’s like that but without the cold, so warming them up doesn’t do anything. And forget sleeping! I’m tired and think I am ready to close my eyes and drift off, but as soon as I close my eyes, my mind starts in on me. Man, am I a nag! Either I’m thinking of all I need to do, of an idea I want to do, or, understandably, I think about the cancer. So I pick up a book, which if it is a good book, I don’t realize how long I’ve been reading until I look at the clock and it is already 4 AM. Or I surf the web from my iThingy, reading news, surfing for new free apps or playing solitaire. I’ve mastered one game so I actually don’t like it when I win because it takes all the fun out of it to keep having the cards stack so nicely! Then I think I am ready to fall asleep but decided to check my email and news just one last time, and bam, I’m wide awake again! The last time I had cancer I took sleeping pills. However, taking them for the 6 or so months that I needed them took me over 3 years to get off them, so I’d really like to avoid them. Probably getting up and moving during the day might be a good solution, if only I weren’t so tired from not sleeping. Can you say “vicious circle?”
Did I tell you about the ducks? We live on a wonderful little creek where I can walk down to our dock and feed the fish and turtles in the evening. Most of my turtles have moved on since a wild gang of mullet have taken over. These guys are like sharks, swarming and circling and having a feeding frenzy. Well, the fact that they are madly attaching cheerios takes away some of the adventure, but it is interesting nonetheless! Anyway, several months ago a pair of the Muscovy ducks came down stream and discovered the free snacks we were giving out. Muscovy ducks come from Brazil and are the size of geese. They are also ugly as sin with large bumpy red skin covering most of their face and head. A large group of them live on our creek, mostly up stream away from our alligator. Muskovys are also very assertive and used to come up the hill to our drive way looking for handouts. We have tried to avoid feeding them because of this and the dogs have helped kept them distrustful of us for most of the time we’ve been here. However, our cheerios and pond food must have been just too good to pass up.
Have you ever watched ducks mating? It is very violent. The male chases the female and then grabs the back of her neck in his beak. Then, he holds her head under water, only bringing it up occasionally so she can breathe. The first time we saw this we tried to ‘rescue’ the female by yelling at the male thinking he was trying to kill her! This time I had my camera, so we just watched and videotaped (is there is a market for duck porn?). Now the interesting part is that, well, male ducks have corkscrew penises. I mean like curly cue pasta, and I have tape to prove it! Wow, what they didn’t teach me in biology class! Anyway, the female duck started waiting at the dock for us in the evening when we’d go out to feed the fish and turtles. Figuring she was pregnant, I made sure she got her fair share before the fish pushed her out the way. Last week, she was there as usual, but this time she was accompanied by eight, itzy bitsy little balls of fluff! They were so cute, trailing behind mama swimming as fast as they little web feet could go. She guided them along the shore so they could nibble up whatever goodies little ducks nibble on, while she waited patiently swimming off to the side. Sometimes she’d move on and the little ones would scamper to catch up to her, the littlest one bringing up the rear! After a while she brought them over to the dock. She let them gobble up the cheerios for a moment before moving them on to a spit of alligator weed along the shore, I guess so could eat their vegetables and not fill up on treats! Such a sensible mama duck! Of course my dogs just couldn’t believe all those wonderfully chase-able little creatures coming right up to the dock and no way to run after them. And yes, just in case, both little dogs wear life jackets! So far none of them have tried to jump in, but Mattie has run off the dock onto the creek bank trying to get them. Now she gets her own cheerio if she sits still and just watches them. I love our creek!
