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Update: You Can't Unbreak Glass…but the Fragments Can Be Contained

Mar19

Final lessons from a pretty, but fragile, aqua bulb lamp.

Aqua Bulb Lamp_Desk 1 #3

   The Patient Path . . .

Aqua Bulb Lamp_Desk 2 #2

       Yields Illumination

Last weekend, I got the call from Pier 1 that my “new new” lamp was finally in. I had broken the “old new” lamp 10 days before while making the purchase and had felt so bad about it I had to do something with the experience. That something was the March 6, 2014 post. I had waited patiently for the new lamp so I could properly illuminate my office with this second lamp on my second desk.

I went to pick up the lamp and was helped by a different store clerk than the one who’d helped me previously. Thankfully, this lamp, unlike the other one, was in a box and not just bubble-wrapped. Then I looked at the top of the box, which, strangely, was printed with a different model name on it. The clerk called the manager over, a different one and not the one who had helped me during the initial purchase. The manager offered to unpack the lamp so I could make sure it was the correct one. On second glance, the correct model name was printed on the sides of the box. Odd. We opened it, and “my” lamp was inside despite the identity confusion on the outside. I quietly took my new lamp home, eager to set it up on my second desk.

While putting it together, I saw that the threaded top where the finial is screwed on to secure the lamp shade had been soldered on crooked, which meant the lampshade pitched forward. Hmmm.

Bent Lamp Harp_30%

So, I called the 800 customer service number, and the representative said I could swap out the lamp for a new one. I couldn’t bear to do this again, and she offered to call the Flemington store on my behalf to see what they could do. She did, and the store had another lamp in stock (in case I should need it?). I called the store and spoke with the manager, who had already dealt with me once that day, but she was agreeable and she said I could swap out either the harp or the entire lamp. I took the bent harp and went back to the store.

While the manager was unpacking the stock lamp, the first young woman who had sold me the one I’d broken 10 days before appeared. She didn’t recognize me, but I “confessed,” and the manager said with mock anger, “Oh, she‘s the one.” They were good natured, but I was uncomfortable and wanted to turn the experience around. So I thanked them for being so nice about the situation and told them about the story on the blog. The young woman looked it up on her smart phone and seemed eager to read it, especially after I said I’d complimented her and the store for their handling of my bungling. I swapped out the harps and left the store, feeling that all had ended well.

When I got home, I finished setting up the second lamp and stood back to admire how softly pretty and glowing my office looked. Then I took the box to the garage and thought about the two different model names on it, unsure of how such a thing could happen. But I decided to take it as a final message about the entire lamp experience. Whereas the first lesson was about the paradox between sturdiness and fragility, and then how vulnerability can become strength once again in the human heart, this lesson seemed to be about patience. But more than that.

This final lesson was also about identity. Just as sturdiness can mask vulnerability, external labels can create confusion about what’s inside. In this case, the true thing–my lamp–was inside a box with two names. Currently, I am working on a story about identity for my writing group, so the occurrence of labeling ambiguity has symbolic meaning that I will be exploring more deeply as I continue to write.

In the meantime, though, I am thankful that the “wrong” name was on the top of the box. Because that name was Sophia–Greek for “wisdom.”

________________

MARCH 6, 2014 POST

Aqua Glass Desk Lamp - 2_50%

Lessons from a pretty, but fragile, aqua bulb lamp.

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My Current Story, Update: Uterine (Endometrial) Cancer–You Can't Unbreak Glass…but the Fragments Can Be Contained

Mar6

Aqua Glass Desk Lamp - 2_50%

Lessons from a pretty, but fragile, aqua bulb lamp.

This story was updated on March 19, 2014.

Shattered Glass & Fragmented Spirits

Part of my personal treatment plan is to sort through all of my possessions–mounds of them, many of them paper records and memorabilia–and consolidate and clear out as much as possible. This is excruciatingly difficult. I am a collector of personal and business organization books and have poked my nose in most of them, but practical advice disintegrates in the face of emotional attachment to the things that give silent witness to your life. Coming face to face with the reality that our time here is finite has had the effect of making me yearn to locate, categorize, and memorialize “lost” mementos from a past that is quickly slipping away while simultaneously making me want to travel lighter and more open into my future. Most of my efforts thus far have been on the order of redistributing, rather than discarding, these things. But I feel the need to know what I have, and where I have it, before I can take bolder steps–I’m not quite ready for big leaps just yet.

I had just managed to clean up my home office to the point that I wanted to prettify it a bit and get it ready for whatever is next. The story of my career is difficult and painful and will wait for another time. At present, my work–my most important job–is to continue to heal and take care of myself while better managing my immediate environment–not only my physical home, but my personal world. So, despite not having an income, I decided to make a few small investments around the house to raise the level of order, calm, and attractiveness a little. Clearing out one small space or adding one fresh touch has powerful cleansing and lightening effects, and the more I do the better I feel. (That is, until I unearth yet more boxes of stuff–my things from my past and my grown son’s things from his past that he swears he doesn’t want–but I don’t quite believe him.)

A week or so ago, I wandered into Pier 1 and found the desk lamp pictured above, which has a white shade lined with the same aqua color as the pretty glass bulbs. I might not have chosen this lamp in isolation, but I knew it would look good in my existing office, which is painted in calming aquamarine colors. It looked so good in the office that I was then inspired to replace a utilitarian black pole lamp with one that matched the desk lamp. Then I looked at the “light naked” second desk in the office and thought I’d better buy a matching desk lamp while it was still available. So I ordered the second aqua desk lamp online and went to Pier 1 yesterday to pick it up, happy with my decision (a rarity).

Well, maybe because it was Ash Wednesday (although I’m not Catholic or a practicing Protestant), or maybe because I was overwhelmingly fatigued (although I’d slept OK), or maybe because I have a lifetime of careless habits (no “althoughs” here), I came home empty handed. I had expected the lamp to be boxed up, as the others were. But it was bubble-wrapped. The saleswoman gave me an explanation I didn’t quite follow, but assured me it wouldn’t have been wrapped if it weren’t in good condition. Nevertheless, she offered to unwrap it and let me inspect it (they don’t offer discounts for floor models). Everything looked good, and the sales clerk rewrapped it and handed it to me over the counter. I put it on the floor as she came around the counter carrying the shade, asking me whether I needed help getting the lamp to the car. As I was rapidly trying to figure out how to manage the lamp, the shade, and my purse, I turned toward the clerk, and the purse hanging from my left arm knocked the bubble-wrapped glass lamp to the floor, shattering those pretty aqua bulbs.

The clerk called her manager over, and they were very nice about it and ordered me a new lamp, returning this one to inventory as “damaged.” This could have gone another way, but I was grateful that these ladies were so gracious and professional about the situation. I apologized and told them I felt terrible, not because I was leaving empty-handed, but because I had “laid to waste” such a pretty lamp. It had felt so heavy and looked so sturdy with its solid metal square base; but in the end, it was quite fragile.

While thinking with sincere regret about being so impulsive and careless, I reflected on the paradox of sturdiness and fragility–this solid-based lamp had survived the handling of manufacture, transport, and store display for who knows how long and had remained upright and intact until circumstances (me) caused it to come crashing down, shattering its delicate heart. It was painful seeing those aqua shards inside the bubble wrap; but as the sales clerk said, at least the fragments were contained.

This seemed like a good analogy to human circumstances, but with a twist: as strong as life may have made us, and as sturdy as we may be on our own feet, some quirk of fate can knock us down at any time. The difference between a shattered lifeless object and a fractured living soul is what we do about it. The lamp had fallen and couldn’t get back up; it couldn’t be repaired–but I could order a new one. I, too, had fallen, but could get back up; I couldn’t order new body parts–but I could repair my spirit.

Maybe we all have a sort of spiritual bubble wrap around our own fragile parts–we may fall, we may crack; but the fragments can be contained, and our essential selves can remain intact. Our attitudes can shift. Our hearts can heal. Our spirits can revive.

Notes of Gratitude 

As I sort through my past, I feel keenly what I have lost. My physical losses are internal and invisible. My nonphysical losses are ephemeral and unseen. But I am thankful that all of these things have been a part of my life. Contentment may not be mine, but as spring approaches and I continue to mend, I realize that although I can’t restore what I once had, I can refresh my life. This is a solitary and mostly lonely process. The flood of support and attention I received at the beginning of my health crisis has become somewhat less as the situation has become the new normal and has been absorbed into my changed life–and other people’s perception of it. But as with the bereaved after a funeral, we are all left alone to cope with grief, loss, and an altered life after everyone goes home, back to their own lives and their own challenges.

Yet support still comes, now in an occasional gentle wave. Any act of kindness or caring is balm to the spirit. My hope for us all is that we can journey through life knowing we have our fellow travelers’ hearts in our hands . . . and that they can be shattered like glass lamp bulbs when knocked off of their (apparently) sturdy base.

Pictured here are two symbols of gratitude:

In an eerie portent of things to come, for my 60th birthday in 2012, my sister, Vicki Sue, gave me a “Kohl’s Cares” package of coordinated pink-ribbon birthday gifts–Kohl’s donates 100% of the net profit to support breast cancer. By doing something caring for me, she was doing a kindness for unknown others. The strange thing was that this scarf wasn’t so “pink,” but more a peachy salmon, the ribbon color for uterine (endometrial) cancer–with which I was diagnosed a year later:

Peach Ribbon 1_50%

And last week, friend Kathryn and I had a lovely lunch in a local teashop, a very special place, at which she presented me with my first and only official uterine cancer ribbon pin:

Peach Ribbon 2

Finally, a special thanks to the ladies at Pier 1 for ordering me a new aqua glass  lamp. I promise to treat it with care.

A Bit More about “The New York Way”

In my February 20, 2014 post, I described “The New York Way” of delivering radiation treatment post-hysterectomy for uterine (endometrial) cancer and also discussed some side effects of vaginal brachytherapy. My short-term side effects are now subsiding, but about a day after the last post and a week after my third and final brachytherapy treatment on Valentine’s Day, I developed full-blown cystitis (constant irritation and burning on urination) and increased bowel changes (gas, frequent BMs, and some leakage). Apparently, these effects were right on schedule according to some of the online patient information I’ve come across. (I’ll update the technical information in a future post.)

Back around the winter holidays, starting a week after my hysterectomy, I had a bout of lymphorrhea, as discussed in the January 10, 2014 post. To make sure I didn’t have a fistula between the bladder and vagina, my surgeon had prescribed a “dye test” using phenazopyridine (Pyridium), pills that turn urine orange–and are also used to soothe the urinary tract for patients with an infection. (I passed the test–no orange showed at the top of the test tampons, and the lymphatic leakage stopped soon after.) I don’t know why, but he had given me several refills of the pills, so (without calling anyone) I went to the pharmacy and got more Pyridium to treat my cystitis. Note that these pills do NOT kill the microorganisms that cause UTIs, but I didn’t have an infection–just burning from the radiation. I took the pills for a week, and they did indeed help. I no longer have burning. The bowel issues have also improved.

What hasn’t improved much is the fatigue, which is worse some days than others. Often, it is related to exertion as I become a bit more active, but not necessarily. I am also waiting for the longer-term side effects to set in and believe I am just starting to notice some of those effects now. But I will discuss these in detail after my first post-radiation checkup, which has been pushed back from March 17 to March 25, when I will also have my first three-month surgical checkup. At that time I’ll know more about radiation effects and how to manage them and will also discuss more of “The New York Way” with my doctors as I continue to read and learn more about different treatment models.

But what’s on my mind now are effects that aren’t physical and healing that isn’t allopathic.*

*A system of medical practice that aims to combat disease by use of remedies (as drugs or surgery).

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My Story – High Cholesterol: A Family History of Cardiovascular Disease

Nov27

White and Blue Daisies_10% One more–and one less–thing to worry about: heart disease. Maybe.

We all need to be aware of our family history as we embark on our personal travels through the world of healthcare and health and well-being.

As discussed in the “My Mother’s Story” posts (see this morning’s update), my mother, Marie Bond, had a heart attack in March 2013 followed by cardiac bypass surgery. She didn’t even know she had heart disease, even though she had known peripheral artery disease (PAD), and her 91-year-old sister, Cecilia Braddock, has a defibrillator-pacemaker. Even more alarming, their mother, also Cecilia, died at age 42 of chronic endocarditis (inflammation of the inside lining of the heart chambers and heart valves) and acute dilatation (enlargement) of the heart. My aunt remembers my biological grandmother, but my mother does not. They had a wonderful stepmother, and Madeline Braddock is the nana I grew up with. I’ll be talking more about my mother’s medical history at a later date.

My mother was put on Plavix (clopidogrel) and baby aspirin (both are anticoagulants, or blood thinners) after her heart attack and also on a statin drug, Lipitor (atorvastatin) 20 mg, as a precaution because her total cholesterol level was a little high at 200 mg/dL (it should be 199 or less). The drug and a low-fat diet brought it down to 137, which is very good. My father was on a statin drug for high cholesterol some years ago. He had a diet rich in fat, which my mother does not–but he refused to change his habits. Also, I recall his saying that he stopped taking the statin because of acute muscle pain, which is a known side effect in some people. (My father died in 2008, but not of heart disease. He also had colon cancer at a younger age, which was cured with surgery alone. It was COPD–chronic obstructive pulmonary disease that caused his death.)

When I went for my pre-D&C blood work in October, my total cholesterol level was 263–dangerously high–and my LDL (low-density lipoprotein, “bad” cholesterol) level was 161–also dangerously high (it should be 99 or less). The only good news was that my HDL (high-density lipoprotein, “good” cholesterol) level was 78, which is high and good (it should be 39 or more in men and 49 or more in women according to the American Heart Association). My doctor warned me that I was at high risk for heart disease and advised me to go on a statin, which I didn’t want to do. She had tried putting me on the non-statin cholesterol drug Zetia (ezetimibe) some months ago, but I had gastrointestinal side effects and lightheadedness and stopped taking it. I told her I’d been on a statin in 2007 and had associated muscle pain, but she said this wasn’t in my records (!). Fortunately, I keep my own records; but by the time I’d looked them up and found that I had been on Zocor (simvastatin) six years ago, which I believed caused my muscle pain, she had already ordered Lipitor 10 mg. So I decided to try it because she said Lipitor is a more effective and safer drug than Zocor. So I started taking it on October 29, 2013.

Earlier this week when I had my pre-hysterectomy blood work done, my doctor also tested my lipids. This was two weeks earlier than she had intended, but I was fasting (needlessly, as it turns out, for the pre-op tests), so she decided to save me a trip (I’ll be otherwise occupied in two weeks anyway). When she called with the results, we were both very surprised—and pleased—to learn that my total cholesterol had dropped from 263 to 178, and my LDL had dropped from 161 to 90; my HDL is still good. And this happened in just under four weeks of therapy and on a very low dose.

Fortunately, I have not experienced muscle pain with Lipitor. My only reaction has been some relatively minor gastrointestinal changes, although I’m under a lot of stress because of the upcoming surgery—a significant contributing factor. My gastroenterologist also said that uterine cancer can cause GI symptoms. (We’ll know whether I have any new GI problems after my colonoscopy and esophagogastroduodenoscopy [EGD] on December 11–two days before my hysterectomy.) My family doctor had advised me to take the supplement CoQ10 (coenzyme Q10), a natural substance similar to a vitamin, to reduce the risk of muscle pain, and I have been taking it.

So although I’ll need to stay on Lipitor indefinitely–I’ll have my cholesterol checked again in three months and then at six-month intervals after that–at least something about me is “normal.” Although I had resisted taking cholesterol medicine, at the moment I’d say it’s very much worth it.

Oh—and I am modifying my diet. But not tomorrow. Thanksgiving is, after all, my favorite holiday.

My Mother’s Story – Cardiovascular Disease: Right Femoral Stent Insertion Monday

Nov27

White and Blue Daisies_10% In yesterday’s post, I gave a brief summary of the stent procedure that my mother, Marie Bond, had on Monday for arterial disease. Here’s an update.

Last night, she was transferred from ICU to Telemetry. She had had to go to ICU after the surgery Monday because she takes Plavix (clopidogrel) and baby aspirin, both blood thinners (anticoagulants) used after a heart attack, which caused a hematoma (pooling of blood) in the wound area of her arm where the stent had been inserted and then routed to her right leg.

I called her this morning, and she sounds fine. She was sitting up in a chair waiting for the surgeon to come in, which he did while I was on the phone, so I heard the conversation. He said she was doing very well. As soon as Physical Therapy comes in to make sure she’s stable enough to walk on her own, she will be discharged to home. She has to return to see him next Wednesday to have the clips (staples) removed from her arm, which is still very sore but seems to be healing well.

So all seems to be well with Mom at 8:00 AM.

And she can go to Thanksgiving dinner with us tomorrow.

Thanks for your concern on her behalf!

My Mother’s Story – Cardiovascular Disease: Right Femoral Stent Insertion Yesterday

Nov26

White and Blue Daisies_10% In yesterday’s post, I gave a brief summary of the medical challenges my mother, Marie Bond, has faced this year and described a procedure she was having yesterday for arterial disease. Here’s an update.

Yesterday, my mother had a right femoral angiogram, angioplasty, and insertion of a stent to increase the blood flow to her right leg. Access was by way of her left brachial artery, through the aorta, and down to the right femoral artery–a long way around from the left arm to the right leg.

The procedure was done fairly late in the day, but went well. Last night, she had to go back in the OR because of a hematoma at the insertion point in her arm, mid way between the elbow and shoulder on the inside. She takes Plavix (clopidogrel) and baby aspirin, both blood thinners (anticoagulants) used after a heart attack, and evidently hematoma formation (pooling of blood) is a common problem because blood pools in the wound area. The procedure to clear it up also went well, although they transferred her to the ICU instead of to a regular room. The original plan was to send her home today, but we’re still waiting to hear.

I just talked to my mother on the phone, and she sounds a big groggy from the two twilight anesthesias yesterday. Otherwise, she sounded good and said she felt fine except for her left arm, which is swollen and sore. The doctor checked her pulses and said they sounded great–in both legs. Apparently improving blood flow in one also has benefit in the other.

My mother is in a suburban Pennsylvania hospital that we’ve all been pretty impressed with, and she seems to have found a very good vascular surgeon.

So we do have things to be grateful for, even though we don’t quite know what our Thanksgiving will look like on Thursday. . . .

My Current Story, Update: Medical Monday for Me–and Also for Mom

Nov25

White and Blue Daisies_10%

My Current Story, Continued – da Vinci Hysterectomy Scheduled for Friday, December 13

As I mentioned in the November 22, 2013 post, which really wasn’t much about me and was mainly about healthcare delivery and reform (it has important links–take a look), I need to go for my medical clearance visit with my family doctor today to prepare for the hysterectomy in 18 days (see the “My Current Story” posts and updates). Last week, I received three phone calls from her office about today’s visit after getting conflicting instructions about whether I had to fast for the blood work–I was given alternating yes and no answers, depending on whom I spoke with. I decided not to take chances and started fasting after breakfast this morning–you need to stop eating and drinking everything but water for 8 hours to be considered fasting, so I should be OK for the 4:00 PM appointment.

Medical clearance by a family doctor includes a brief physical examination; blood work (which is good for 30 days), including a complete blood count (CBC) and a complete metabolic profile (CMP–this is why I have to fast); urinalysis (UA); EKG (which I had done in October before the D&C and is good for six months, so that’s one less thing needed today); and a chest X-ray (which will be good for one year should I–heaven forbid–need another procedure). During the visit I also need to discuss when to stop taking prescription medications before the surgery.

I wish doctors would take a few minutes to educate their staffs about such simple matters as office-visit preparation, but maybe it just doesn’t occur to them (?). I’ll mention it, gently, when I see my doctor today.

Now, I have another story to tell–or at least to begin. This one is about my mother.

P.S. During my visit with the doctor this afternoon, I mentioned the confusion about fasting. She said you never have to fast for pre-op blood work and that a nurse probably told the receptionist I had to fast because glucose level is part of the testing. But the fasting was not in vain because she was also able to test my lipids (for cholesterol) so I don’t have to go back for that in two weeks, when I will be otherwise occupied. Also, I called the radiology center at 1:15 to try to get a walk-in appointment for my chest x-ray at 3:00 and did. So the appointments today went very smoothly for me. And I was grateful for that and for my family doctor, who is new to me (and young!)–she showed the right combination of professionalism and concern.

But things didn’t go quite as smoothly for my mother, as I will describe in tomorrow’s post.

My Mother’s Long Story, Ongoing – Procedure for Arterial Disease Scheduled for Today

Last March, my mother, Marie Bond, had a heart attack, for which she had cardiac bypass surgery. I will discuss heart disease and treatment in a future post–a very important topic.

But this was just the beginning of a very tough year for her. She had a major complication following surgery–not with her heart, which did fine, but with a MRSA (methicillin-resistant Staphylococcus aureus) infection in her feet that she had picked up in one of the medical facilities. This went undiagnosed for a few weeks. I will also be discussing this insidious problem in a future post.

Fast forward to June, after the MRSA had finally been identified and was being treated–but wasn’t healing, and my mother needed an urgent appointment with a vascular surgeon for poor circulation in her right leg. He found no pulses, which is why the MRSA infection wasn’t healing in that foot, and he also said she was in danger of losing her leg. She had known peripheral artery disease (PAD) that had gotten worse. I will also discuss this serious problem later.

The surgeon performed an urgent right femoral-popliteal bypass graft using a vein from the same leg and also a femoral endarterectomy to remove the plaque buildup in the artery to restore the blood flow in her legs and feet, which was successful. (Apparently, she obtained some benefit to her left leg from the surgery on her right leg.) Over the following months, she slowly got stronger. But she needed repeated visits to the Wound Care Center for an open, unhealed area in her groin and for the MRSA that was slowly disappearing from her feet.

Recently, she had an ultrasound to determine how good the blood flow to her leg was. It wasn’t. She saw the surgeon again last week, and today he is scheduled to do a right femoral angiogram, angioplasty, and insertion of a stent by way of her left brachial artery–a long way around from the left arm to the right leg, but he can’t take a chance on reopening the groin wound. The procedure should take about 1 1/2 hours. If all goes well, she will be in the hospital just overnight. Her left arm will be sore from putting the stent through it, but she should be OK to go out to Thanksgiving dinner with us on Thursday.

Thanksgiving 2013

This will be an interesting Thanksgiving. I usually have dinner here, but this year I’m giving myself a break. Next year, all the fancy linen and dishes will come out, and we’ll have a house full of people to celebrate with. And I won’t mind wrestling with the turkey at all (as long as there’s wine–I can wrestle with almost anything if there’s wine).

In the meantime, we do have things to be grateful for–including the medical interventions that are saving our lives. And my son, Matt, will be coming from Boston to join my husband, Farok, and me, along with my mother and her 91-year-old sister, Cecilia Braddock–who also has heart disease, but is doing well. It is worth noting that their mother, my maternal biological grandmother, died of heart diseas eat the age of only 42. My mother was still a baby at the time.

Look for an update on my mother soon, as well as more information about her various medical challenges–these problems affect so many people