Tuesday, November 27, 2018

Pie in the Sky


My mother loved cookbooks, and in an early American cookbook, she found a pumpkin pie recipe. The recipe made about a dozen pies so she worked it down to a filling that would make 2-3 pies, depending on their size. Our daughters associated pie with grandma to the extent that, when my mom died, our older daughter saw a hand holding out a piece of pie in the clouds on the way home. Everybody, including a good friend from high school, loved that pie, but she did not want to share the recipe she worked so hard on. As she got older and the holiday baking was passed on to me, she finally relented and said I could share the recipe. My friend was very happy, but as often happens with recipes, they never quite come out the same when someone else does them. At Thanksgiving, I bake pies for my sister and our kids and mail them out. This year, I had a spare I was going to give away at Christmas, until I heard from that high school friend’s daughter that she had ovarian cancer. I packed up that pi, mailed it out, and surprised her with it. To say she was happy was an understatement, but what really made me happy was her comment that it was just what she needed. 

Anyone dealing with a chronic disease or medical condition needs acts of kindness, cancer patients more so than some. A Fellow from the Institute for Healthcare improvement stated that “simple acts of kindness can be a potent antidote to negative emotions and may improve outcomes for those experiencing the frightening journey called cancer.” If you play to your strengths, there are so many ways you can help someone get through their therapy. Life happens every day no matter how someone feels, and having a friend come by to cook, clean, garden, chat, or whatever you can do to help is much appreciated. 

For those who like to knit or crochet, there are many projects you can do. For example, not all breast cancer patients can afford a prosthesis after their lumpectomy or mastectomy.  One woman put her hands to work and knitted knockers were born. Any cancer patient undergoing chemotherapy appreciates a chemo cap, not only for the warmth, but often as a fashion statement. Prayer shawls are also a popular item to make, warming both the person who made it and the person who received it. 

Knitting and other hand crafts are also good for the patient, providing a meditative project to get their minds off of their treatment. One small company partnered with Lion Brand yarns to provide knit kits to young adults. If your friend/family member is interested in some other craft, make up your own kit to give them. And don’t forget books, DVDs, puzzles, etc. They all provide much needed relief. When life gives a friend lemons, think about making a lemon meringue pie and serve them with love.

Wednesday, October 31, 2018

Mighty Mite

I have been on allergy meds for many a year, but this year, I started having trouble with my ears. The simple act of blowing my nose would cause my ears to clog up, and they often felt like I had climbed a large elevation. No amount of chewing, yawning, or other tricks did any good, so it was off to the ENT. Since I have no clue as to what exactly I am allergic, testing seemed appropriate. If you have never had this done, consider it good training if you are thinking of getting a tattoo.

After all the poking, the result showed only two things: cat and dust mites. Since the cat said he was going nowhere, I decided to see what could be done to mitigate the dust mites. My big takeaway was that maybe my husband should do the housecleaning, but that's probably not going to happen either, but here's what experts have to say.

Dust mites are related to spiders and ticks, and they live in our homes year round, happily munching on the dead cells we keep flaking off as well as those dust mites who have passed on. Their favorite places to hang out are pretty much the same as ours: beds, upholstered furniture, carpets. For those of you with an inclination to leather, here's your excuse to buy that leather suite you've been longing for. I wonder if it could be called a medical tax deduction, but I digress.

There are many things you can do to cut down on the mite population. Luckily for me, we do not have carpets, so that's one less thing to worry about. For the bed, you want to at least use mattress and pillow encasings that are made for the job. There are also certified sheets and blankets, but simply washing those once a week in hot water should do the trick. And keep the pets and stuffed animals off the bed, unless you want to be washing them weekly also You will want to wash your curtains in hot water more frequently than the seasonally that I tend to do, and if you can get rid of the wall-to-wall carpeting, all the better. Throw rugs can be used if you're willing to wash them frequently.

Invest in a vacuum with a HEPA filter and an upholstery attachment. It will only get the surface mites off the sofa but it's better than nothing. Dusting is best done with a cloth that is damp or sprayed with furniture polish. This way less dust ends up in the air. If you can't convince someone else to do your cleaning, purchase some face masks to wear while you work.

Mites like the same temperatures we do, 65 to 80ish, but one thing you can do is to change your furnace filter often (at least every 3 months) and purchase minimum efficiency reporting value (MERV) filters of 11 or 12. If your furnace has a humidifier, set it below 50, as mites like it moist. 

Some folks can get by with over-the-counter allergy medications such as Allegra or Nasacort. If this type doesn't do the trick, allergy shots may be your next step, although the FDA has just released a new under-the-tongue medication that has seen success. The neti pot is also your friend, especially after you have finished doing anything that stirs up the dust. And remember, your symptoms may be all in your head, but that doesn't mean you're nuts.

Friday, September 28, 2018

Hold, two, three, and breathe.

My family has been long-time members of the Syracuse area YMCA. I go at least once a week to do a hydrorun class and maybe another day for some cardio on the bike, but mostly, I get try to get out for a walk. As the former running coach said: "get out for 15 minutes, 6 days a week; then you can build from there," and I was mainly in the prebuilding stage. So I was never a big exercise buff, until that cancer diagnosis. Then, I started taking a closer look at what general shape I was in. Where I might have slacked on the walking, I would push myself out the door, mentally chanting "15 15 15." And luckily for me, the YMCA has two great programs for people with cancer. Livestrong is a program that many Ys across the country have. It's a 12-week group exercise program that gives you a well-rounded routine that includes cardio, balance, core work, weights, and stretching. The National Cancer Institute's fact sheet on physical activity and cancer talks about the many ways exercise, along with a healthy diet, help not only during the treatment process, but afterwards, possibly reducing the risk of some types of cancer. At the Syracuse area Ys, participants receive free, family membership during the 12-week course. Most Ys also have financial assistance if you want to continue membership, so don't let money stand in the way of your health. A program that's special to Syracuse area Ys is Laurie's Hope. This one is for breast cancer patients only, giving a free, one-year family membership, along with support programs and a restorative yoga class, as long as you go to the Y at least once a week.

No matter where you live, if you have cancer, be sure to reach out to the groups and programs in your area, particularly if you have a Livestrong program. There's an extra bit of strength you gain working out with other people who have "been there, done that," as far as cancer is concerned. And be sure to set yourself a goal. One Livestrong graduate had a simple goal; he wanted to be flexible enough to touch his toes. Took him the full 12 weeks, but he did it. I've never, ever done a chin-up, but every year at the state fair, I walk by the Marine's booth and see folks taking the chin-up challenge. My goal is to become strong enough to go to that booth next year and do one chin-up. See you there. Oorah!

Thursday, August 2, 2018

Can You Hear Me Now?

I finished my radiation on Friday the 13th, which puts me in the "this is an auspicious day" camp. Mostly when you have radiation, you see the technicians, but the physician schedules a few visits  to keep tabs on how the treatment is affecting you. This usually involves a check of the skin being irradiated and questions on your fatigue level, etc. When asked how I was doing, I replied: "Fairly tired, as predicted, and my IBS (irritable bowel syndrome) has started acting up." Both doctor and nurse looked at me like I was speaking in tongues and he said: "The radiation doesn't go near your stomach." I knew what area was being irradiated, and I have the tattoos to prove it, but I resisted whacking him upside the head, he being young enough to be my son, and said: "Yes, but my body is now under stress, and stress is a trigger for IBS." He just kind of made a note of that, which is an acknowledgement of sorts, and I went home and took a peppermint oil capsule, which seems to work for me. This exchange made me think that specialists can be too specialized, and that physicians need to remember that many patients are pretty in-tune with their bodies and how they work, so they need to at least consider what the patient sees as real. That is a matter of building good communication skills. Communication is a two-way street, talking and listening, and the Amputee Coalition of America has a great article on how a patient can do just that.

As it is a two-way street, physicians also need to learn and practice the art of effective patient communication. If you want to increase your odds of getting a whole-body approach to your health care, you can check to see if there is a practitioner of  osteopathic or functional medicine in your area. These MDs are trained to look at the sum of your parts with an eye towards the preventative rather than just treating individual symptoms. Many of us, though, are happy with our physicians, so it is up to us to help them along with understanding what is going on in our bodies. Always write up a list of questions you want to discuss: some patient portals have this option in the appointment confirmation feature so you don't have to worry about leaving your list at home. If it's an issue that has been going on for awhile, try to keep a journal of what symptoms happen when. Providing your physician with whatever relevant information you have can go a long way in getting the conversation started, and getting you back on the road to good health.

Tuesday, June 26, 2018

Like a Robin.

After much consideration, I decided thumbs up for radiation therapy; thumbs down for aromatase inhibitor. I consider myself fortunate in having only 16 sessions scheduled, with weekends and holidays (thank you Independence Day) off. Having gone through a few sessions, right now the worst thing is the country music station the technologists like to listen to, but since a session only lasts for a couple of songs, I can deal. So what does radiation therapy do? In a nutshell, it's a super-powered x-ray that can kill cancer cells, along with some of your healthy cells. But the healthy cells can replicate themselves while the cancer cells are not so talented.

How about side effects? The one experienced by most people is skin irritation in one form or another, most often a red, sunburned look. (Just call me Robin Red Breast.) You can help minimize this effect in a number of ways. My physician recommended a 1% hydrocortisone cream once a day to lessen the amount of skin peeling. Washing with a fragrance-free moisturizing soap like Dove or Dr Bronner's castile baby soap will cut down on irritation. Using a lotion 3 to 4 times a day on the area (Moisturize me, Moisturize me!) helps with dryness. I went for My Girls Skin Care, as it's all natural, but there are many others out there. There's some research on a sandalwood/turmeric cream (available online or at your local Indian grocer), but as I'm not a perfume wearer, the smell of the sandalwood oil was a bit too heavy for me. (My daughter also wondered if you'd end up with a breast like an Oompa Loompa due to the turmeric.) You can also eat turmeric, which is a natural anti-inflammmatory agent, just don't take the supplements until after your treatment is done as the higher dose in them may affect how the radiation works. I particularly enjoy ginger/turmeric tea or golden milk.

Many people get tired as their body rebuilds those cells. It's important to be kind to yourself, rest, eat well, and continue your exercises. Yoga helps some people stay calm and may help with treatment depression. And what better excuse to get Indian take away then: "I'm too tired to cook and I could use the turmeric in the curry." Works for me. Finally, you're not on this journey alone. Talk with your care team, your friends and family, a support group, anyone who you feel can help you. Maybe now is the time to binge on that comedy series you wanted to see, or to stop watching the news. Like John Lennon sang: "Whatever gets you through the night is alright." Do what you need to get you through this night and then be there for someone else when their night comes.

Thursday, May 31, 2018

Back in March, my routine mammogram had some suspicious spots. An ultrasound showed calcium deposits, and a needle biopsy showed cancer cells. The good news was that it was DCIS, ductal carcinoma in situ, and it was noninvasive. One lumpectomy and a re-incision later, and I had nice clear margins all around the area. All that went along like clockwork, each decision leading to the next without too much thought on my part. Yes, I could, of course, have chosen a wait-and-see approach, since the area was not overly large. For me, I knew just the knowledge of a cancer, no matter how confined, just happily coexisting in my milk duct would have driven me nuts. I also knew that in 20% of women diagnosed with DCIS through needle biopsy, invasive cancer was found only because they had a lumpectomy. Now that the surgery is over, the hard part for me, as far as decision making goes, is at hand.

Post-surgical treatment can be radiation therapy, endocrine therapy, or both. There's a magic formula, known as a nomogram, available for some cancer types, including breast cancer. When my specific information is plugged in, the physician came up with a 14% chance of the cancer reoccurring. Undergoing radiation therapy cuts that risk by one half to two thirds, so 5%-7%; endocrine therapy alone closer to one third, so 9% about. Combining the two therapies would only reduce the chance of recurrence by two percent better than radiation alone. So, I could just wait-and-see, having a mammogram every six months on the affected breast; go for the radiation alone; go for the endocrine therapy alone, or get the combo platter. Part of me thinks wait-and-see would be nice, since each therapy has the possibility of side effects and 86% chance of not having breast cancer again are pretty good odds. Part of me thinks radiation might be the way to go, since the first lumpectomy found some outlier cells in the area that should have been the safe margin, cells that didn't show up on the ultrasound, so there may be others floating about. There's a part of my that really does not want to do endocrine therapy because I'm not a big fan of medication and I get enough hot flashes as it is. As Dirty Harry says: "you've got to ask yourself one question: 'Do I feel lucky?' Well do ya, punk?" Luck and chance; I've never done well at the casino so in that sense, I'm not very lucky. Maybe the question, for me and for everyone, is what will give me peace of mind, what decision can I live with. "May the odds be ever in your favor."

Friday, March 30, 2018

I Don't Understand

"I don't understand." Three simple words, but when dealing with health issues, a phrase not used as much as it should be. Recently, I had some medical news I needed to share with friends and family. I wrote up what, to me, seemed a pretty simple "Just the facts, ma'am" description and sent it off. One friend replied "I don't understand everything you said, but I have your back." I appreciated the support, but the idea that what I thought was a pretty clear explanation was, indeed, not so clear, was troubling. Granted, as a medical librarian, I have a different background from many, but I really tried to not use jargon. Obviously, it wasn't enough, and this brings me to the topic of health literacy. MedlinePlus' definition states "Health literacy refers to how well a person can get the health information and services that they need, and how well they understand them." You may be well read, but when it comes to your health, it can be like reading another language. And for those who cannot read well, or at all, things get even scarier. Why is this important? People who do not understand their treatment generally have poorer health, and may not have the ability to make the right medical decisions for themselves. Health literacy needs to begin in the physicians' offices and in hospitals, which need to be sure that the information they give to patients, whether written or verbal, is provided in a way that that individual can understand. The National Institute of Health has classes and tools to help create information that is understandable. But patients also need to learn to Ask Three Questions: What are my options? What are the benefits and possible risks? How likely are these risks and benefits? And they should never be afraid to say those three simple words: "I don't understand."