Fear Interferes with Fine After 50

Sometimes it’s really hard to be fine after 50 — especially if something’s going on inside your body that scares you. Fear prevents your mind from convincing you to feel fine after 50 when your body is telling you otherwise. So what do you do? What do I do? I’m getting ahead of myself….

Last February (2011) I nearly died from a massive abdominal infection I didn’t even know I had until a day after I woke up following 11 1/2 hours of surgery. I’ll spare you the gory details and just say that I lost my bladder, prostate, rectum, and all urinary plumbing. I’ve since learned to get along reasonably well with two ostomy bags attached to my stomach, into which urine and stool are respectively collected through a stoma for each. (Kinda gross, but you get used to it after awhile.)

During my recovery, I was taking high doses of three antibiotics in an effort to kill the abdominal infection, which had impacted my pelvic bone. I stopped taking the medication on June 2nd due to peripheral neuropathy in my feet, lower legs and fingers. Fortunately a subsequent CT scan indicated that the infection was gone.

On June 24th, my physical therapist discovered a large DVT (deep vein thrombosis or blood clot) in my lower right leg. It ran from behind my knee cap all the way down to my ankle, so chances are it had formed weeks earlier and had gone undetected until then. Immediately I was given Lovenox for five days and placed on Coumadin (a.k.a. Warfarin).

Shortly after I started taking Coumadin, I began to notice some occasional spotting of blood in my underwear coming from both orifices. Now there had always been some occasional rectal fluid leakage ever since the surgery, but nothing from the front side. Everything is disconnected there.

The spotting seemed to fluctuate up and down in accordance with the Coumadin dosage, which changed just about every month. That is, until a week ago. Suddenly, on Monday, December 19th, the bleeding increased to an alarming rate. In addition to the pads I was already wearing in my underwear, I started to insert double paper towels, triple-folded. They’d be blood-soaked in a matter of a few hours. Naturally I was worried.

On Thursday morning I saw my primary care physician (PCP) who is managing the DVT treatment and Coumadin dosage. He liked the numbers from my previous blood test and was not going to change anything. Then I told him about the alarming bleeding I was experiencing, and that I had NOT taken my Coumadin that morning for fear it was the cause. He told me I needed to go immediately to the USC University Hospital ER and ask to see the surgeons who had operated on me, because only they knew what they had done to my insides, and what might be causing the excessive bleeding.

As Tina drove me the 45 minutes to downtown Los Angeles, I called the offices of my two surgeons to inform them I was on the way to the ER and why. I had visions of being admitted to the hospital for a battery of tests and scoping procedures. I prepared myself for the worst: being in the hospital on Christmas, and more surgery to stop whatever internal bleeding was going on. It turns out there is no ER at USC University Hospital. I was told to go to the Evaluation and Treatment Center (ETC) and that they were expecting me.

Expecting a patient with a scary condition thought to be an emergency and being ready to see that patient as soon as he arrives are two completely different things in today’s high-tech world of medical care. Three hours after arriving, when I was finally able to see one of my surgeon’s assistants and she asked to see what was going on, to my shock and disappointment, the bleeding had virtually stopped! I felt like the doctor must think I was making much ado about nothing. I kept saying, “But you should have seen it yesterday!” (I had actually saved a bloodied paper towel from the day before to bring in as a sample, but I accidentally left it at home.)

A CBC blood test revealed a slightly low red cell count and a slightly elevated white cell count. I didn’t have a fever; I didn’t have any other symptoms consistent with an infection or problem in my abdomen. The doctor who was seeing me, who was in contact with my surgeon, reported that my surgeon “is not surprised” that I’m having a bleeding episode from both orifices. It’s “not unusual,” she says, in cases as complicated as mine. I was sent home with a prescription for Ciprofloxacin (CIPRO) for the possible infection.

While I was relieved and somewhat comforted to hear that my bleeding was “not unusual,” I still had many questions. Why had the bleeding increased so suddenly and so drastically? How can they just dismiss this without even wondering whether or not something has changed inside my abdomen? Why did they not take a urine sample to find out whether or not I was dehydrated, which would have affected the CBC results? Why didn’t they take a culture from the soiled underwear pads or paper towels and run sensitivity tests to determine whether or not CIPRO was an appropriate antibiotic?

Concluding that the excessive bleeding must have been related to the high Coumadin dose (7.5 mg) which I had just started on November 28th, I didn’t take it again on Friday. But the bleeding resumed! Now I’m walking a tightrope between taking or not taking Coumadin, taking or not taking CIPRO (which I fear will make my neuropathy worse even though the doctor said it wouldn’t; the CIPRO medication guide says otherwise), and what I still consider to be excessive bleeding — which no one at USC has actually observed.

I’m reminded yet again that all of my days on this earth were preordained by God long before I was born. I have no idea how many more days I’ll have. My life is “just a vapor that appears for a little while and then vanishes away.” (James 4:14) All I can do is try to make the most of each one…

And then there’s the promise in Isaiah 41:10, in which God says, “Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you; yes, I will help you; yes, I will uphold you with the right hand of My righteousness.” And I try my best to trust Him in spite of my fears. And life goes on…. for now.

Balancing the Good and the Bad

As Phil shared earlier, I found out on 13 September 2011 that my life-partner/fiance Michael (we have lived together for 25 years now) has what appears to be Stage 1 multiple myeloma, a form of bone marrow cancer that impacts the cells responsible for for creating antibodies. I say “appears to be” because there is something called smoldering myeloma or MGUS that is the precursor to full-blown multiple myeloma; he could still possibly be in this shadow zone where the disease slowly progresses but does not yet require treatment. When Michael and I looked up the disease on the Internet, we discovered that his numbers were potentially still in this shadow stage as much as they were in the Stage 1 category. Whether it is smoldering or Stage 1, though, it is really a numbers game from this point on.

Michael’s hematologist did what I refer to as the “partial disclosure.” He did not discuss staging or life expectancy or cure rates–he did not even mention the word “cancer.” He did not offer to give us copies of the blood test results. He simply smiled, spoke calmly and gave us enough information so that we would be forced to look this up later after the visit, which of course we did. He answered specific questions if we asked them but neither of us knew enough about this particular disease to ask the appropriate questions. I find this to be a common scenario, especially during the first “here is your diagnosis” visit. Not only is there the shock value to contend with but those of us on the receiving end are also at the wrong end of the learning curve. We have no way yet to put the information we are receiving–or later gathering–into context. It is extremely easy to misunderstand and to make false assumptions.

So, for those of you who may be in the same position that Michael and I are in right now, I make this one suggestion: gather as much information as you feel comfortable doing–or have a trusted friend do so for you–but simply hold on to the information for now without making assumptions or interpreting it for yourself. It’s good to gather information so that you can ask more targeted questions  and so that you will better understand the answers but it can be detrimental to read the data in lieu of asking medical professionals the appropriate questions. All of this takes time. Give yourself the time to absorb and to accept.

In Michael’s particular case, his bone marrow is overproducing plasma cells that produce a certain antibody: he is overproducing IgG, one of the major antibodies that I no longer make. (How ironic is that?!? Michael and I have always joked that we frequently are at the extreme ends of the continuum from one another–if there was ever an example of it, it is this.) So even though Michael and I were familiar with the terminology that his doctor was using, it still was not enough to help us understand the bigger picture of Michael’s disease.

What I know to be true–today, two days after learning that the love of my life has an incurable progressive disease–is that his diagnosis is only one part of a multidimensional, rich life that completely transcends any particular specific circumstance. I can choose to grieve over future projections of loss or I can be at peace with what I can be at peace with today. Michael’s diagnosis is just one thing–and things constantly change. It is one bad thing among many other things. I may not be able to change the circumstances but I can control and transmute my reactions to them. Otherwise, how can I be available to Michael completely? How can I be with him completely? How can I be open to God’s presence–which ultimately is the source of all comfort and security? My grief and my sorrow simply get in the way. All I can do is to feel what I feel as it comes up, recognize it, and then allow it to soften and to go.

At the beginning of this particular journey, this is the best that I can do. And if you are in the same place, it might be the best that you can do, too. Trust me–it’s enough.

 

 

Embracing Your Partner’s Unembraceable Physical Challenge

My heart goes out to Tina Fox, my friend and FineAfter50 business partner. Her own physical challenges have recently reached the point where they are very close to being unembraceable both mentally and emotionally (see the previous blog post on this page). There are days when it’s very difficult for her to win the battle against discouragement and depression. But on Tuesday morning this week, things suddenly and unexpectedly got a whole lot worse.

Tina found out on Tuesday, December 13th, 2011 that Michael, her partner for more than 25 years, has multiple myeloma in his blood. It’s an incurable cancer that starts in plasma cells in the bone marrow. The cancerous plasma cells multiply and basically crowd out red and white blood cells, thus preventing the immune system from doing its job of protecting the body from germs and other harmful substances. The average life expectancy of a person with multiple myeloma of the blood is from four to seven years.

To say that this news was a shock to Tina and Michael is putting it mildly. They have both lived their adult lives as many of us do, believing theoretically that their lives are in God’s hands and that He ultimately will determine the number of their days, while assuming on a practical level that they would both live into old age and enjoy a period of retirement from the rigors of working to earn a living. Moreover, they have both assumed during all the years that they’ve been together that Tina would die first and that Michael would quickly get over her passing and move on with his life. Tina believes that she’s more dependent on Michael than he is on her.

Now, all of a sudden, everything is reversed. Backwards. Flipped upside down. It’s not supposed to be like this. Tina can’t imagine living without Michael; the thought has never crossed her mind until this week. She’s not prepared for this. The prospect of her outliving Michael and being alone — without him –is extremely upsetting and depressing.

This situation brings to the surface a whole new aspect of the concept of being fine after 50. It’s one thing to embrace your own physical challenges and accept your own limitations and define your own “new normal,” but how do you embrace the physical challenges of your spouse or child or other loved one that you love dearly? How do you accept the limitations of a loved one who is suffering from an incurable, debilitating, fatal cancer?

To cope successfully with such brute reality, I think we need to develop and nurture a totally new mindset. I think the apostle Paul gives really good advice in this regard in Romans 12:2 when he says, “And do not be conformed to this world, but be transformed by the renewing of your mind…” One translation says, “Don’t let the world around you squeeze you into its own mold…”

Different religious persuasions may disagree on whether the renewing of the mind is done internally by oneself or requires outside spiritual help, but one thing we know for sure from the ancient Greek manuscripts: the renewing of the mind is not a one shot deal; the Greek verb tense used for this word implies a continual action. In other words, we need to develop a habit of thinking differently — in this case, regarding human life in general, and regarding the life of our loved one in particular — and take every opportunity to apply that new way of thinking to the events and circumstances of our daily lives.

Here’s an example of what I’m talking about. The sudden deaths of my parents and 19-year-old brother in a plane crash on June 27th, 1969 taught me that no one is guaranteed a long life on this earth. Not me, not my wife, not my kids, not Tina, not Michael; no one. We shouldn’t expect to live past a certain age; we shouldn’t count on it; we definitely shouldn’t think that we have a right to it or that we deserve it.

Why not? Because accidents happen every day. People die unexpectedly every day. We know this; we are constantly reminded of it by the news media. We just assume that it will never happen to us or to one of our loved ones. Bad assumption…

When you hear or read a news report about an accidental death or a natural disaster that takes lives, how often do you think about the loved ones of those victims and what they are going through as they deal with their grief? How often do you think about what YOU would do if that news report were about the death of one of YOUR loved ones? It would be good for us over-50 folks to begin trying to put ourselves in the shoes of those who are going through the grief of a sudden and unexpected loss of a love one, because every day the chances of such a loss happening to us increases.

Consider this: Michael could have suddenly lost his life in an accident the day before he learned he has multiple myeloma. But he didn’t. Instead, he received unexpected news that he has incurable cancer. If Tina had been given the choice last week between Michael losing his life suddenly in an accident or learning that he has an incurable cancer that may reduce his life expectancy to four to seven years, I’m pretty sure she would have chosen the four to seven year option. I would have chosen the four to seven year option instead of the sudden plane crash option for my parents and brother.

So do you see how framing the unexpected and unpleasant cancer diagnosis and prognosis in terms of a sudden accidental death (always a possibility) changes the picture from one of sadness and depression to one of joyful anticipation of another four to seven years together? Tina and Michael will have many days and weeks to be together, to do fun things, to enjoy each other’s company, to talk and share and say their good-byes — all of which were not possible for me to do with my parents and brother, nor would be possible for Tina to do with Michael were he to have lost his life suddenly in an accident.

Another aspect of renewing the mind is developing an attitude of thankfulness. I’ve written about this elsewhere: the idea that every breath we take and every heartbeat is a gift from our Creator, and that we should be aware constantly of His grace in our lives. I often forget, but I try to say a prayer of thanksgiving every morning when I wake up — for the new day, for my life having been preserved and sustained through the night, for the privilege of one more day of life on planet earth to enjoy the beauty of God’s creation.

Here are some things Tina and Michael can be thankful for right now: (1) the cancer is Stage 1; it was caught early. That’s certainly much better than if it were Stage 2 or Stage 3; (2) Michael has good health insurance through Tina’s former employer; (3) Tina and Michael live in Los Angeles county and thus have nearby access to some of the finest medical experts, hospitals and cancer treatment centers in the country; (4) Tina is no longer working long, stressful hours as a technical writer and program manager, so she has more time available than she otherwise would have to support Michael and help him with research regarding various treatment options.

The apostle James sums up the new mindset I’ve been talking about above, and that I recommend we over-50 folks work at adopting and applying in our lives:
“Come now, you who say, ‘Today or tomorrow, we shall go to such and such a city and spend a year there and engage in business and make a profit.’ Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanishes away. Instead, you ought to say, ‘If the Lord wills, we shall live and also do this or that.'” (James 4:13-15)

May we all no longer be conformed in our thinking to the world view that our media and our culture ram down our throats: that we deserve long life and comfort and constant pleasure and a perpetual youthful appearance; but may we instead be transformed by the continual renewing of our minds. Selah. (“selah” means “Pause and calmly think of that!)

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If you are having difficulty dealing with physical challenges, either your own or those of a loved one, and you’d like to talk, feel free to contact us. We may be able to help, or refer you to someone else who can help.

Embracing Unembraceable Physical Challenges

Embracing physical challenges is one of the aspects or steps of managing expectations, which is one of the keys to learning how to thrive in body, mind and spirit after the age of 50. But what if the physical challenges one faces are so chronic and so severe that it’s nearly impossible to embrace them at all, much less with a positive mindset?

Such is the case with my colleague and very close friend Tina Fox. Tina suffers from Common Variable Immunodeficiency (CVID) — also known as Acquired Hypogammaglobulinemia (say that one five times in rapid succession) —  a group of approximately 150 primary immunodeficiencies which supposedly have a common set of symptoms. I don’t know about you, but any disease that has both “common” and “variable” in its name sounds like trouble to me. That may be the understatement of the century.

CVID is believed to be a family of genetically determined primary immune defects that are produced by variable underlying causes. The result of these defects is that the patient (victim would be a more accurate term if you were to ask me) doesn’t produce sufficient antibodies in response to exposure to pathogens. As a result, the patient’s immune system fails to protect against common bacterial and viral infections. In other words, the patient is susceptible to illness. Another understatement.

The list of symptoms and side effects of CVID is scary long. Just one of a bulleted list of 19 symptoms found on Wikipedia says, “Recurring infections involving the ears, eyes, sinuses, nose, bronchi, lungs, skin, GI tract, joints, bones, CNS, parotid glands, etc.” Et cetera? Really? The list of infections is quite long enough without the et cetera, thank you very much! And note the word recurring. I can’t even begin to imagine what it’s like to deal with this sickness every day of your life.

Tina has Crohn’s disease; she has asthma; she has nerve damage on one side of her face and nerve damage in one elbow that goes down her forearm and into her hand; she has almost constant joint pain; the discs in all of her vertebra are degenerating; she is starting to lose peripheral vision in one eye. She’s had to have surgery on her left shoulder and faces surgery on her right shoulder next month. And she is suffering other symptoms and side effects which I won’t mention here. All because of a genetic disorder she was probably born with, but which didn’t manifest itself in detectable ways until she was an adult.

Tina has to give herself an infusion with three needles and syringes and a mechanical pump once a week that takes two or three hours to administer and which gives her flu-like symptoms for two or three days after. But the manifestations of the side-effects of the infusion vary from week to week. Tina may feel okay one day and horrible the next. She never knows from one day to the next how she’s going to feel or how much energy she’s going to have. She’s a living illustration of the proverb that says, “Do not boast about tomorrow, for you do not know what a day may bring forth.” (Proverbs 27:1)

Oh, did I mention the last of the 19 bulleted signs and symptoms of CVID? It’s this: “Anxiety and depression, usually as a result of dealing with the other symptoms.” Not surprising considering the other 18 symptoms, all of which are recurring if and when treatment for them stops. How does Tina, or anyone else suffering from CVID at the age of 50+, manage to conquer anxiety and depression and maintain a mindset of “fine after 50?” It’s hard — very hard some days.

One thing that helps is focusing on the conditions and circumstances of others, not on her own problems. Tina is a pastor of a small community of believers, and as such, she is responsible for serving and ministering to others on a daily basis. One family in her congregation in particular has a bright-eyed, gregarious three-year-old boy who was recently diagnosed with a terminal illness. Tina’s mind and heart, and what little energy she has, are being directed toward that little boy and his parents, and toward all the members of her community. When the focus of your life is on other people and their problems and needs, your own problems and needs seemingly become less acute.

Tina also appropriates the comfort of the words of Jesus in Matthew 11:28-30, “Come to Me, all who are weary and heavy laden, and I will give you rest. Take My yoke upon you, and learn from Me, for I am gentle and humble in heart; and you shall find rest for your souls. For My yoke is easy and My load is light.”

The yoke that Jesus was talking about is a yoke designed for two oxen, not a yoke for a single ox. When we take the yoke of Jesus upon ourselves, we are joining forces with Him. We no longer face the burdens of life alone. He actually does the heavy lifting; we pretty much just go along for the ride. That’s how to be fine after 50, no matter what physical challenges and burdens we may be facing today or tomorrow.

P.S. Find articles about Tina’s physical burdens and challenges here and here.

Children vs. Fine After 50

If you are a regular reader of this blog, you will soon learn, if you haven’t already, that in our opinion the keys to feeling fine after 50 — in spite of one’s physical condition and in spite of one’s circumstances in life — are (1) to have a personal relationship with God based on trust in His word, and (2) to maintain a positive mindset regarding the present and the future.

There is great debate over what it means to have a personal relationship with God, how such a relationship comes about, and what is necessary on our part to maintain it. There are also differing opinions as to what is the source of a positive mindset regarding the present and the future, and what is necessary on our part to maintain such a mindset. These questions will be discussed and debated in ongoing blog posts on both FineAfter50 and Structured Ink — but not in this article…

I’ve found that it’s usually much easier for me to trust God regarding my own life than it is to trust Him concerning someone else’s life. And it’s much easier for me to develop and maintain a positive attitude regarding my own life than it is to do the same regarding someone else’s life.

Case in point: I’ve been in a funk for the past two days. I’ve felt profoundly sad as well as sorry for my 23-year-old son. I haven’t felt fine after 50.

My son was out with his girlfriend and three Hispanic friends in Hollywood two nights ago. As they were all walking back to their cars to go home, the three Hispanic guys were attacked by a group of eight men, at least one of which had a knife. My son did not participate in the street fight that followed, but stayed close enough to the melee to be spotted by the police when they arrived. At that point, my son and his girlfriend turned and continued walking to their car.

As the attackers scattered, the police gave chase, but only caught up with my son and his girlfriend since they were walking, not running. (All of the attackers got away.)

The police yelled, “Stop!” My son froze in his tracks, his back to the officers. One of them said, “Turn around and put your hands behind your back.” My son did not comply. He was then taken to the concrete sidewalk hard by one of the officers. When he verbally objected to being slammed to the ground, three officers kicked him and beat him while he was on the ground. They forced his girlfriend to sit on the ground and face a wall and not look at what was happening.

My son is now being held at the West Hollywood Sheriff’s Station until Tuesday, when he will appear in court on the charge of “obstructing the duties of an officer.” Because I’m a civilian volunteer with the Lomita Station of the Los Angeles Sheriff Department (LASD), the watch commander at the West Hollywood station allowed me to have a “video conference” with my son from the lobby of the station. Just one problem with that: my son could see me, but I couldn’t see him; the video monitor in the station lobby was blank.

I don’t know why my son refused to turn around and put his hands behind his back when the police officer told him to do so. I don’t think he knows either. Prior to that moment, he hadn’t done anything wrong. He deserved to be taken to the ground for ignoring a direct, lawful command from a law enforcement officer. But I don’t think he deserved to be severely beaten after he had already been subdued, regardless of what he said to the officers. He had to be taken to the hospital before being taken to jail for booking. His only “crime” was not turning around and putting his hands behind his back when he was instructed to do so.

I feel so badly for him. I’ve been sad all weekend. I’ve felt miserable. I’ve wanted to pray for him, but I haven’t known how to pray or what to pray for. And I haven’t known how to get out of my funk. Then today, a breakthrough.

I was listening to a CD in my car called Hymns for Guitar. One of the cuts was a hymn called, “Tis So Sweet to Trust in Jesus.” As I listened to the guitar music, I whispered the words: “Tis so sweet to trust in Jesus, just to take Him at His word; Just to rest upon His promise, just to know ‘Thus saith the Lord.'”

Then I remembered a promise from God in Hebrews 13:5-6. It says, “Let your way of life be free from the love of money, being content with what you have, for He Himself has said, “I will never desert you, nor will I ever forsake you,” so that we confidently say, “The Lord is my helper, I will not be afraid. What shall man do to me?”

I realized that God is with my son even as he sits in jail for three days, waiting for his day in court. I also realized that I should pray for my son that he would remember that God is with him; that he would know that he’s not abandoned. Also I’m praying that he will learn two important lessons from this experience: never ignore or disobey a command from a police officer even if you think it’s unreasonable or unfair, and never, NEVER mouth off to a police officer even if you are certain you are being treated unfairly.

I still feel sorry for my son that he’s having to go through this experience. I’m still sad for him also. But I’m now back to feeling Fine After 50, thanks to an old, old gospel hymn and a Bible passage I memorized years ago. In other words, thanks to God.