Monday, June 15, 2015
Last Thursday, June 11th, I went for my annual CT scan and cancer check-up. It’s been 11 years since I was first diagnosed and operated on. I used to dwell on cancer a lot more in the early years, especially the first five. Then, over time, I thought about it less and less and only when I needed to make my appointments. My CT scans came out fine again this year, and there was immediate relief. No change and no new findings are the best news you can get. But then my doctor follows up with a little physical exam. Usually there is nothing remarkable and our visit is concluded. This time that was not the case.
This time she found that on the left side of my rear jaw the salivary gland (the parotid) was slightly swollen compared to the right side. She didn’t feel any lumps and said, “It’s probably nothing.” For most people, that phrase might be very comforting, but for cancer patients it sounds the alarm. After all, we have heard that line before. When you first go to see the doctor and they haven’t run any tests, they don’t want to frighten you with all the negative possibilities running through their heads, so they say, “It’s probably nothing, but we will want to run some tests.” Several times after that, when little spots showed up on my lungs or liver I would hear, “It’s probably nothing, but we will retest you in three months or six months to see if there are any changes.” Even when those tests come out fine, you’ve still gone through all the “what ifs.” You wonder why there are new spots, what could they be, and then you pray for good results. The good results that allow you to resume your daily life and not have to think about this for another year.
So my doctor, who I love, seems a little perplexed by her findings. I can see the wheels spin in her head as she searches for answers, but none are forthcoming. As she tries to reassure me that this is probably her tendency to be overly cautious and that I shouldn’t worry, she mentions she may want to have the area tested. She isn’t sure what would be the best test, a CT scan or ultrasound. In the end, she says she will consult with a colleague about it, she may just have me return to see her in two months. I have to call her today to see what her final decision is in exploring what is “probably nothing.” Meanwhile, my dormant paranoia has awaken with this turn or events.
And, since Thursday, when I left her office, this minor swelling is all I can think about. It’s barely noticeable. I didn’t see it when I looked in the mirror before. I don’t feel anything, no discomfort. Now I can see it. I study my face to see if it’s changed or gotten bigger. I look it up online, which is the worse thing you can do. Every cause possible is listed, none of them say “probably nothing.” It’s always something.
No matter if you are 5 years, 10 years 15 years or more “cancer free,” you are never really free of cancer. The thought of it possibly returning haunts you. After all, no one can tell you why you got it in the first place. It’s unpredictable. And the truth is once you have had cancer, you are at a higher risk for other forms of cancer.
So, I will call my doctor this afternoon to see what she has decided to do. She has decided on the ultrasound.
UPDATE: June 19th, went for the ultrasound hoping to be done with this year's round of tests. The technician spent 15 to 20 minutes scaning my neck and I was getting a bad feeling. Of course she is not allowed to tell me anything, a doctor has to interpret the results. But then she says, I'll be back, I'm going to get the doctor. Well that can't be good. The doctor arrives within 5 minutes, that seems like an eternity. She repeats the test. She asks when I noticed the slight swelling on the left side of my face. I tell her I didn't, I only noticed it last week after my doctor saw it and wanted to check it out. And where is the swelling she asks (so did the techician). The swelling is very slight and hard to see, so I place my hand in the area. She proceeds to scan the area over and over. Finally, she looks at me and says she sees something, but she can't say what it is. The results are inconclusive, but she will study the images again and write her report. The best she can tell me is that I will probably have to go and get a CT scan of the area. That will undoubtedly be her recommendation to my doctor. I can feel the anxiety building up in me already. That's not what I wanted to hear. I get a little emotional. Neither the doctor nor technician want to deal with that, they are busy and maybe behind schedule. Now I have to wait for my doctor to call and tell me more or less the same bit of news. I don't think she will tell me it's probably nothing this time. This time there is something, we just don't know what it is yet.
In the meantime, while I wait for my doctor to call, I am breaking the doctor patient cardinal rule of not doing research on the internet. What else can I do while I am sitting here? So I look up everything on salivary glands, untrasound tests, swelling of the parotid gland. What I learned is the salivary glands do get tumors, most of them turn out to benign. Reassuring, but I have a history of cancer. Ultrasound tests are supposed to pick up on tumors. There was definitiely something there, but my test was inconclusive. Does that mean it's not a tumor? I also learned that salivary glands can develop stones, like the kidneys. Ultrasound tests do not idenify calcifications. Could that be what the doctor saw but couldn't diagnosis from the test? Who knows? I'm just twiddling my thumbs waiting for the call to set the appointment for the CT Scan.
UPDATE #2 - Monday, June 22nd. Spoke to my doctor about the ultrasound being inconclusive. There is something there that's 3/4 of an inch big. She says it still could be nothing, but she is sending me for an MRI on Wednesday, June 24th. I guess we are pulling out the big guns since we skipped over the CT scan. The MRI imaging gives 3D pictures so hopefully we will know how to proceed next. If it's something requiring a closer look, she will send me to a specialist, probably a ENT onologist. Here we go again. Thank God my doctor is thorough and cautious. No one else has been able to see this slight swelling without me pointing it out. If anything she caught it early.
UPDATE #3 I went for my MRI on Wednesday, June 24th and promptly called the doctor's office on Thursday afternoon for the results. I didn't get a call back so I waited till Friday afternoon and placed another call. My call was not returned. Now, I know I have to face the weekend with anxiety and have to hold it together until I can speak to the doctor on Monday. I have refrained from doing internet searches and tried to distract myself with hobbies and keeping busy. Sometimes it's hard to breathe. I hate waiting. I have no choice. It's finally Monday and I'm hoping to get a call in the morning. Nothing. By three in the afternoon I am getting antsy and call again. The secretary tells me the doctor is out of the country until next Monday and she will try to have the covering doctor call me with the results. I'm stunned and in disbelief. I don't know what to think. I don't know what to do except to wait for a stranger, a doctor I don't even know, to call me and explain my test results. I have convinced myself it's something serious and want to move forward, but I have to wait. I'm exhausted. I'm worried. I'm scared.
UPDATE #4 Thursday, July 1st- Just got off the phone with the Doctor's assistant who emailed the doctor concerning my MRI test results. The doctor said there is a tumor that is probably benign, close to or on the carotid artery and/or facial nerve. She is communicating with a specialist who is reviewing the tests. We'll see what they decide soon enough. I wish the results were posted so now I can read exactly what the location is. This news was supposed to put my mind at ease.
UPDATE #5 Friday, July 3rd my MRI results were posted online and I printed them. I didn't read them because I was afraid of what I might see. Instead my husand, who understands very little aboutmedical terms, skimmed the document and looked up something he saw in the conclusion section. He tells me they think the mass is benign. I give in a read the report. It does sound hopeful. I want to talk to my doctor about how to proceed next, but have to wait till Monday when she returns from vacation. On Tuesday, July 7th, I call my doctor's office to ask how we will proceed based on the test results. The mass is located between the internal and external carotid arteries and I know enough to know the location is not good. The secretary tells me she hasn't gotten back to me because the specialist is on vacation this week. My reaction internally was distressed, but I kept my wits about me and asked if we can at least make an appointment with the specialist for when he returns. She says yes and later gives an appointment for July 16th.
On July 16th I am finally called in for the appointment I have been waiting for for 5 weeks. The doctor comes in and tells me I have something that is very rare. Eleven years ago I was told the exact same thing, another very rare condtion. How lucky can one person be? Two very rare conditions in one life time. He explains that the problem with the location is not so much that it's between the carotid arteries but that there are two nerves in that location, one that controls the tongue and the other the voice. Any surgery would be risky and the risks would not outweigh the benefits at this time. This mass is very slow growing and has probably been there 10 to 20 years already. His plan is to do a needle biopsy next week to make 100% sure it's benign and after that he will watch it by annual MRIs to see how it's progressing. All in all this is probably good news considering the alternative. If it was cancer, it would have to be surgically removed and chances are there would be serious consequences to the nerves in the area. Plus, I would mostly like need radiation and I know that in that part of the body that would also be very bad. So I thank God for sparing me from the worst and I pray this mass grows extremely slowly and doesn't have to be dealt with for a very long time.
UPDATE #6 A few days after my appointment I get a call from the doctor's nurse. They can't schedule the appointment this week because the radiologist that my doctor wants to perform the biopsy is on vacation for two weeks. My appointment will be on Ausgust 5th. That makes a total of four weeks of doctor vacations that I have had to wait through to put this behind me for about 6 months until my next MRI. I guess it's good no one feels a sense of urgency about this except me.
August 5th I go in for the biopsy to confirm what the MRI indicated. The doctor is very nice and explains the procedure thoroughly. First I get one shot in the neck for local anesthisia to the outside area. Then she uses a fine needle to do the biopsy and removes some tissue. She checks with another doctor to see if she has enough of a sample or has to use a larger needle. When she comes back she says she can do two more fine needle passes to get addition tissue samples. So after four needles in the neck I am done and have to wait 5 days for the results. In the meantime I make some vacation plans of my own. I write my original oncologist a note updating her on my latest tests and she answers immediately and says she will call me as soon as the results are in. She calls on the 5th day to confirm the mass is benign and I will be followed for this condition by the neck specialist. However, the neck specialist never did call me with the results as he said he would. So for now I can put this all to rest and wait for testing in January to assess the situation or probably to see how much change, if any, occurred within a six month period.
August 14th we leave for a nice family vacation, no tests, no doctors, no needles! Bye!
Sunday, June 7, 2015
I read a blog recently that reminded me so much of my mother and her "third" language. My mother's first language was the Sicilian dialect of Italy, her second language was Brooklynese, a corrupted form of English. Her third language was Italian and American Idioms and Proverbs. I acquired all three at a very early age from my mother because we were together virtually 24/7. My mother loved to use idioms and proverbs to make her point or for special emphasis. You could not argue with her because these expressions were so well known and widely used that they must be true, right?
For example, my mother would ask me or my brother to help her with something or she would need help and we were blind to it. It could be something as simple as helping her carry groceries, drying a few dishes, etc. When we didn't rise to the occasion, as most kids don't, she would pull out her popular Italian expression: Two parents can take care of 100 children, but 100 children can't take care of two parents." Did I mention my mother had a Ph.D. in guilt? Another one of her Italian expressions was used when we would would tell her we would finish something later. Postponing anything never sat well with my mother as she thought we would never get back to it. She was probably right. "There's an old expression in Italy, while you are dancing keep dancing." I interpreted that to mean once you sit down and take a break you won't get up again. Then, if one of her friends or family asked her to do something and she really couldn't help them, we would hear: "You can do 100 good things for people and they forget it, but if there is one thing you can't do, that's what they remember." When we would take big helpings of food (and my mother always knew exactly how much we could eat) she would tell us, "You're eyes are bigger than your stomach." Of course my mom was always right. And God forbid I didn't get 100 on a test, just a 95, and I told her about all the kids who got less than me, she would always say, "Look at the ones who did better than you, not the ones who did worse."
My mother was never at a loss for an English idiom or proverb either. They rolled off her tongue in practically every conversation. "It's raining cats and dogs!" "Absence makes the heart grow stronger." "Actions speak louder than words." "Ask me no questions and I'll tell you no lies," "Better safe than sorry." "Easier said than done." There are just too many to count. These nice and neat little packages of wisdom spiced up many of our little talks. Without even knowing it, I was using them myself and with my slipping memory I sometimes confuse two and combine them much to my daughter's delight. Apparently she has them instilled in her too and she immediately recognizes when I make a mistake and corrects me.
Now you might think that's all there is to it, but no. About seven years ago I took a French class in college on proverbs and idioms, expecting to learn a few from the French culture. Seems that most cultures have their own ways of saying the same identical things. So the professor gave us a list of French proverbs to translate into the English! Now my "third" language, which I learned from my mother, came in very handy. I had no trouble running down almost the entire list and finding the English equivalent for the French proverb. However, most of my young classmates had never heard of the English proverbs and even when they heard them they had no clue what they meant. One asked me, "What does kick the bucket mean?" I explained that one and a few more and she just looked perplexed. Nothing made sense to her. How can they figure out the equivalent proverb when they never heard of them before? I kept raising my hand, all by myself, to give the answer the professor was looking for. Finally I was embarrassed and said she could call on me if she needed a response. Half way through the exercise she turned to me and said she should have let me teach the class that day.
I thought to myself that it's a shame these young people have no clue about all these proverbs and no use for them either. They just shrugged them off and were happy to move on. Most of these tiny bites of wisdom are easy to remember and still apply today. They are timeless. Many cultures thought enough of them to have their own variation to express the same piece of wisdom. They must have been appreciated and passed down from generation to generation for a very long time, but like with many other traditions and values in this day and age, they have fallen to the wayside.
Saturday, June 6, 2015
"It's a gonna happen to you."
From the movie Marty with Ernest Borgnine
which I highly recommend!
I don’t know why they call younger women high maintenance, but they ain’t seen nothing yet. I’ve written about this before, but getting old is not cheap and the amount of work that goes into it is very time consuming and stressful. I have noticed, from the time I turned 30 and every decade after, there has been a decline in perfect health. It starts gradually, so gradually that you might not even notice at first. Maybe it’ll happen when you pick up your child’s medicine bottle and can’t be sure you are reading the dosage right. And, because it affects your child, you make an appointment for the eye doctor, who tells you you now need mild glasses. Those glasses will be forever “tweaked” year after glorious year. Let’s fast forward, shall we?
What happens in your forties and fifties? Well there is premenopause that can last about seven years before you get to the end of this most uncomfortable journey. Your flow may last a lot longer, mine was up to ten days and came about every two to three weeks. Then there are the hot flashes and night sweats and mood swings. Your body has to adjust to the change and so does your family. “Open the damn window, close the window. Is it hot in here or is it me?” Any good gynecologist will advise you to get a bone density test to see if you have osteoporosis and to what degree. Well I went for mine and discovered I have the bones of an 80 year old. Another prescription for Fosamax and calcium is required to stop bone loss. I need to eat better and exercise . . . blah, blah, blah. I know this already, I just have another good reason to get motivated. Of course, being diagnosed with a rare cancer at age 50 wasn’t in the plan, but it happened. The only good thing that happened at that time was my doctor, who I love, asked me if I was 40 and when I said “No, 50,” she said no and looked at my chart to check it and appeared stunned. I also discovered during these years that I had some hearing loss, but nothing to worry about, I don’t need a hearing aid just yet. So I expected, when I turned 60, to face another series of medical issues and my body did not let me down.
About a year and a half ago I discovered that my blood pressure was high and went to the doctor to have that checked out. It was pretty damn high. Here comes the prescription pad for a water pill. Guess what? The old cholesterol is high too, very high. I tell the doctor I’ll try to lower it by diet (like that was going to work). He reluctantly agreed and scheduled me for another blood test soon. Suffice to say, my plan didn’t work and instead I get a script for Lipitor. Good news! I am very responsive to Lipitor. My cholesterol drops dramatically by the next blood test. Eventually, he cuts the dosage in half, but I remind myself I am 60.
But it never ends there does it? The last two years I have been complaining nonstop about my eye glasses. I wear bifocals and kept saying they put the line in the wrong place. It’s aggravating. I just got a new pair a couple of weeks ago and I am having the same issues. WTH is going on??? Yesterday I went with my daughter to the ophthalmologist for her eye exam and to offer a second opinion on new frames she wanted to pick out. As he is talking to her, he turns to look at me and says I should get new glasses. Even when it’s not MY appointment, they find something wrong with me. I tell him I just did and I’m not happy with them. He says he can see that because I keep poking them to keep them up on the face. He says the metal frames are heavy in the front and will keep sliding down. Besides that, when a person is in their fifties and sixties they can’t use bifocals any more. No? No. How old are you he asks. I reply, “I’m sixty. So he says, “Okay so you look young for your age.” But he still insists I need “progressive” lens for in between distances. Just great, now my eyes are playing tricks on me. So he says he can give me a good deal in July, plastic designer frames and progressive lens, when they have their sale. Given my current glasses cost me nothing I may go back and see what he can do to help me see better.
Today I went for my umpteenth CT scan in the last eleven years. It’s a precautionary check-up that I guess will go on for the rest of my life. I’ll see my doctor this coming Thursday for the results. Hopefully, it will just be my “well visit” once again. But there is always a cloud over my head. It’s always something.
Now I will get on my soapbox for a minute. For all you young women this is my parting advice to you. I know you are busy . . . very busy . . ., usually taking care of others, but you really should consider this now, while it’s not too hard. Take care of yourself now. Try to buy healthy foods and leave out snacks, you can‘t eat what isn‘t there. Eating well and giving your body the proper nutrition leads you to good health and energy. Get as much sleep as you need. Sleep is very important for your coping skills and handling stress. Find time in your regular every day schedule to do some exercise you enjoy, even if it’s walking 30 minutes a day for starters. Exercise also gives you an energy boost and can be addicting if you do it daily. Go for your annual physicals and other exams you may need for your stage in life. Do not neglect yourself. Little things turn into big things, curable things turn into chronic and even fatal conditions. As you get older, these things are harder and harder to do. You can make a lifestyle change and be a role model for your children, family and friends. You can be a better, healthier you. Do it! Take it from a wise, high maintenance, old lady who wants to keep her Facebooks friends healthy and happy!