(micro) Managing

One of the things I have struggled with since being diagnosed is my, what some might call, my control issues. (Think the National Car Rental commercial “I’m not a control freak, more of a control enthusiast.”). Once you become a patient you do lose a lot of control, not all, but a lot. I admit, that where I can, when dealing with my personal things I do like to try and take control. (I can literally hear those that know me well making all kinds of snide and sarcastic comments – it’s o.k. I can take it!)

Managing my time off from work is one of those areas that I have tried to take control. From my perspective I should be able to do it and I need to do it. Let me preface by saying that my boss and workplace are very understanding about my condition and situation, unequivocally great. Additionally, my place of work gives a very generous sick  and paid time off benefit. However, when my husband was sick and dying I used all of my accumulated sick time. So 3 years ago I was starting at ground zero. Work is flexible and I typically arrive at work 30-45 minutes early. When I take a half day to go to Boston for treatment I check email and respond where I can even if I can’t actually “produce” any work. I try to be fair, sometimes more than fair, I am good with that, I rest easier if I do it that way. Which brings us to treatment days (days 1,4,8 and 11 in a 21 day cycle).

My actual treatment, including have two nurses check and cross-check the drug takes less than 5 minutes.  The give me 4 small pills of dexamethasone (decadron) and then give me an injection in the fat of my lower belly.  I don’t have to wait after that,  I can just walk out.  Simple, right?

Here’s the thing that I try to do.  I try to beat the system. I have an 8:30 am treatment appointment, the lab opens at 7:00 am. I figure I’ll quick get the blood work and then go to work for a bit and come back for treatment. I arrive at the lab at 6:50 am.  Surprise – I am not the only one with this idea, there is a line and they aren’t even open yet. Foiled! I now go to the lab right in my town at 7:00 on my way into work.

I arrive early for my treatment appointments. I am ever hopeful. But – the drug hasn’t been ordered, have to wait for MD to approve a slightly low blood count, they didn’t mix the drug because of the snow storm they didn’t know who would show up, the drug hasn’t been mixed (no explanation), etc. Suffice it to say, it’s always something.

I am not, by nature, a patient person (again I hear the guffaws). I do try to be reasonable. When I am scheduled to see a doctor for an appointment, particularly an oncologist, I have learned that you often have to wait, however you are never rushed out of an appointment. The doctor will take all the time he/she and you need.  So you wait, but then the time is yours until you are completely done. And when I arrive at 7:20 for a 7:30 appointment I truly do not start to get irritated until 8:10. Because by 8:10 I know that I will not get to work on time. Does my boss care if I arrive 15, 20 or 30 minutes late?  Not at all. But I do. Partially because I am working so gosh darn hard to get there on time! And I know that stress and anxiety is not good for me, not good for my body, my immune system.  Maybe once I learn to meditate (on my list) I can make better use of that waiting time.

This morning, I arrived (with a terrible cold) at 7:20 for my 7:30 appointment. One of the nurses comes out and starts chatting with a patient who she has befriended who she does not have today. Picture me sitting there, and all I can think, as she is chatting away, is if she is MY nurse!!@$#@$!! She wasn’t. Then the medical assistance arrives, she is the sweet older woman, perfectly lovely and efficient. She greets the receptionist and the receptionist starts telling her that some friend of hers, or her friend’s sister or something (breaking every HIPAA regulation there is!) was hospitalized, blah, blah, blah, blah, blah… She finally takes three of us back to be weighed (you get weighed before every treatment and at every visit) and she tells me the nurse I have – score! – the smart, nice, super efficient and very thorough one. I go to my room and wait. The MA does my vitals (I’ll have you know with all this impatience etc. my blood pressure 118/72 – I credited all of my swearing, an excellent release). Then the nurse stops in.  She just stops in because she forgot her badge at home this morning, but her husband is meeting her in front of the hospital to give it to her, because he is awesome like that, and then she is going to do this other woman’s blood draw, it’s really quick, buy my velcade is there and my blood work looks great.

It just goes to show you, it’s always something.

P.S. Got to work at 8:51.

Treatment

In December my doctor at Dana Farber said it was time to start treating my disease. The treatment is a 3-week cycle. I need to go to get a subcutaneous injection of a chemotherapy drug, velcade, on days 1, 4, 8 and 11, along with a dose of dexamethasone (a steroid) and I take a pill every evening for days 1-14 of revlimid and then i get 7 days off.  Because of the frequency of the treatment it was decided that I would get my treatment at Smilow (Yale New Haven).  How the relationship between my treating doctor at Smilow and my primary doctor at Dana Farber will work has been a little bit stressful. No one was very clear as to precisely what the parameter were.

I started treatment at Smilow on January 5th.  It was a scramble to start it that day, and it was the day I “needed” it to start. The timing starting that date worked best for my daughter’s wedding and for my February trip to Florida.  Fortunately we got it done.

I am halfway through the third cycle now.  Side effects are nothing terrible and are mostly predictable.Day 1 is a weird combination of the stimulating effect of the steroid coupled with the flu-ish and tired feeling from the chemo drugs. Day 2 is usually a good day (even if I don;t sleep much the night of Day 1 from the steroids), Day 3 I am really tired and then it repeats.

I didn’t realize the subtle ways that the treatment affected me until my first “off week” when I woke up the first morning “drug free” and immediately thought, “this is just me, I feel like myself”.

On top of the chemo regimen I now also take acyclovir (antiviral medication) twice a day, every day even my off week, an aspirin to prevent blood clots, a multivitamin, and a variety of things to help with the nagging side effect of constipation. So, I have gone from being so proud of being middle-aged and on no medications, to having a medicine cabinet full of drugs I take every day.

I also have some neuropathy in my feet (a common side effect) and irritation at the velcade inject site (the administer it in your belly fat – lovely!).

So nothing onerous, haven’t missed any work (except for appointment time), just try to schedule events appropriately, avoiding my really tired days – definitely do-able.

Sharing

People always say that you never know how you will react until it happens to you.  And I can tell you that that couldn’t be more true. When I was going through the testing leading up to the diagnosis I only told my boyfriend Scot, and two close friends. Much like with the thyroid issue, I just didn’t want to needlessly worry my loved ones. My husband had only been gone 2 and a half years, it all seemed too close.  But then when I did find out I had cancer I simply could not tell my kids, I shard with my sister, but not my brother nor my mother and father.

I was diagnosed with smoldering multiple myeloma, one step above MGUS and one step below active multiple myeloma.  I would not need treatment until my disease became active.  So, I decided that I would not tell my children or the rest of my family until I had to be treated.  If anyone had ever asked me, “If you found out you had cancer what would you do?” – keeping it a secret would not have been my answer.  And yet I did.  My daughter was newly engaged.  My goal was to hopefully keep it a secret until after the wedding.

For the most part keeping the secret was easy.  Telling people you have cancer, an incurable cancer, really isn’t something you look forward to. I did share it with a few other friends.  Always making sure it wasn’t someone that somehow it would get back to my kids. Someone told me that when you someone says they won’t tell anyone, they tell only two people.  And you know, I think that’s probably true.

I decided to get my care at Dana Farber in Boston, it was between Dana Farber and Memorial Sloan Kettering in NYC – my sister wisely suggested that maybe we should just try a change of scenery (my husband was treated at Sloan).  I feel that I am getting world class treatment there.  My clinician, Dr. Munshi is smart, thoughtful and kind-hearted – smart being the most important factor for me.

In November there were some changes in how of active multiple myeloma (MM) was defined.  And I saw that I met some of the criteria.  Dr. Munshi scheduled a bone marrow biopsy.  I was anemic. And at my December 11th appointment he told me that it was time we started to treat my MM.  He eased into it, in the gentlest way.  And when I cried he reminded me that when I first came to him I was anxious to do something, to get some treatment (there was a promising clinical trial of a vaccine, but I was missing the antigen required). My sister and I laughed later in the car yelling “Fuck him for reminding us of what we wanted!!”

So there we were, December 11th, he wanted me to start treatment right after New Year’s (or sooner).  I had to tell my kids.  December 18th was the anniversary of their father’s death. We had fun family holiday events planned that I didn’t want to ruin with my “news”.  I wanted to tell the two of them together, in person.  I kept throwing dates around, trying to figure it out, how to get them together without raising their suspicions, but tell them together.  It came down to Sunday, December 28th.  We were going to NYC to see my stepson and his family.  I decided I would tell them on the way home.  And then my son “blew us off” and didn’t come. I figured we would stop on our way back at his place and I would tell them then.  My daughter told me that she and her fiance would be driving separately. So I finally decided I would tell her before we went our separate ways in the city and then I would stop on my way back and tell my son. Not ideal.  And I hemmed and hawed the whole time, do I, don’t I.  My heart was racing, I was having terrible anxiety.  I was a mess.  I ended up telling my daughter standing on a street corner in NYC.  Which is oddly private, probably more private than sitting in a restaurant. It was noisy, no one cared what we were doing, that we were crying. It was one of the hardest things I have ever had to do.

And then I call my son to tell him I am going to stop by.  He isn’t home, out with a friend, “why what do you want to talk about?” – so I tell him over the phone.  Best laid plans…

My sister was tasked with telling my mother, father and brother – she is my hero.

My sister-in-law told my husband’s family. And I believe the word has spread, a bit.

But this brings me to here, this blog.  When my husband was sick I created a CaringBridge page for him.  He knew so many people, had so many friends, it was truly onerous to think about keeping everyone informed as to his status.  There were always people who wanted to talk to and tell himself after an appointment, but the site became a way for everyone else to know and reach out to him.

I couldn’t bring myself to make my own CaringBridge page. This seems less morbid, even thought it may serve the same purpose.

Did I ever think I wold have a blog? No. Did I think I would be diagnosed with cancer at age 52, no. But here I am, and well, here I am.

Incidental Findings

So, since this is about my health, well, me and my health.  Let me start by saying I’ve always been pretty healthy, at times even very healthy.  A whole slew of orthopedic issues: toe that dislocates, ankles I’ve been spraining incessantly since I was 9, and then all of the achilles issues (both legs) including partial ruptures, debridement surgery.  Most of which I “blame” on my level of activity, playing tackle football with the boys in the neighborhood, frisbee football (where I first dislocated my toe playing in the grass barefoot), years of volleyball and basketball. I did have a benign tumor removed near my clavicle in my late teens, which I only mention because Dr. Bernie Siegel was the surgeon who removed it.  And I had tachycardia starting when I was 18, which did land me in the emergency room a few times, but was resolved with a cardiac ablation in 2010.

For a while there I took great pride in “approaching” middle age and not taking any medications.  Low cholesterol, low blood pressure, etc. But when my husband was dying, the stress definitely started to take its toll.  My body was doing strange things: my hair was falling out and I had terrible sweating and body odor (neither of which I had ever had before, and terrible is really an understatement). And when he dies I stopped sleeping,  With Ambien I was only getting 3-4 hours of sleep per night, every night, for about 9 months straight. I don’t know how I functioned. And then I noticed a weird lump on my throat.  It was my thyroid.  After a series of tests it was determined that I had a toxic multinodular goiter (as pretty as it sounds).  It was not malignant. It was causing me to have slightly overactive thyroid, but just needed to be watched.  This started only a few months after my husband died.  I told almost no one.  It just seemed like too much, to have a “medical issue” going on (especially for my children) so soon after my husband died.  And it really only had to be watched.

And then I went to my neurologist (I have a neurologist because I have suffered from migraines ever since my first child was born, however I had not been in years) because I was having days and days of migraines, which was unusual for me.  She gave me some medicine to try (which I ended up not liking) and thought I should get a baseline MRI of my brain, you know, “just in case I was ever in North Dakota, came down with a bad migraine and ended up in an ER where they did an MRI, found something weird and operated on my brain” – you know, like that. So I get the MRI and it turns out I have a golf ball size tumor (benign) an olfactory cortex meningioma.  This has nothing to do with my migraines, simply an incidental finding.  Although initially the local surgeon wanted to operate practically immediately (a craniotomy, you know, cut in your hair line, peel your forehead down over your face, cut into your skull – pretty!), the surgeon at Columbia-Presbyterian took a much more conservative approach, feeling that my risk of losing my sense of smell/taste was greater if it was operated on than the chances were of it growing. Phew – right?

Then I decide I need to get a new internist and I need a physical.  I see this great young doctor who is very thorough and smart.  I mention some stomach issues I have that seem to be associated with wheat products and he tests me for celiac disease. And then he called me and said he wanted to run a couple of more tests. And then he called me and told me I had these extra proteins in my blood, monoclonal proteins and that I had something called MGUS (mononclonal gammopathy of undetermined significance) and that he wanted me to see a hematologist.  Hematologist sounds so benign, but hematologists are hem/oncs, or hematologist/oncologists, so not so benign.  I did my online research and knew that I could have multiple myeloma, or my MGUS could turn into multiple myeloma.  I also knew that the only way to determine where I was at was to have a bone marrow biopsy.  So I was not surprised when at my first visit to the hem/onc they did a bone marrow biopsy. I was surprised to learn a few days later that I did have multiple myeloma.  I had no symptoms, I felt great, an incidental finding.  Nothing to do with my multinodular toxic goiter or my olfactory cortex meningioma, but as of May 2014, I had cancer.

About Me

I never thought I’d be writing a blog, and certainly not one that is all about me, and yet, here I am. For me life has always been interesting, not mundane, not always exciting per se, but hardly ever the norm.  When I say “It’s always something…” I don’t hear it as my life is a mess, it’s always something.  It’s more of life is challenging and evolving and messy and inspiring and wondrous, it’s always something.

I grew up in suburbia, but my grandfather was the head of the Communist Party in the U.S. I was raised keeping that a secret, so that was something.  I am tall, always have been, really tall (6’1″), I was taller than every human being in my elementary school when I was in 6th grade, that is still something.  My parents divorced in my teens. I got a full basketball scholarship to Duke University. I married my high school basketball coach, 18 years my senior. I raised a stepson.  I had two amazing kids of my own. We had a multicultural household, secular christian (I guess that’s what I would call it, you know Santa and the Easter Bunny) and Judaism, I used to say if it was a holiday – we celebrated it!  We were uber involved in our community, mostly through youth athletics, coaching, managing and spectating.

Our kids grew up, I started a photography business on the side (I hope to share some photos here) and we planned to travel a bit together, went to Portugal for our 25th anniversary and then my husband was diagnosed with stage 4 prostate cancer, initially they gave him 5 years, but he only survived for a little over two. I was going to say lived, but really, it was more like surviving.  That, indeed, was something.  I became a widow at 49. It was the worst thing that ever happened to me. But, then it was something in another way. I relearned who I was. You don’t realize how much of you becomes a combination of you and another person in a relationship.  And not in a bad way, it is essential, and you don’t lose yourself, you just evolve. And I found myself suddenly alone, and learning about myself and who I had become over the years, what was just me, and what was part of who we were together.  Which in retrospect, was probably hardest on those around me who had gotten used to the old me, or never even knew the original me.

A year later I found love again.  Sold my home of 31 years and moved closer to work. I became more fit, ate more healthfully and was amazed that I could be happy, truly happy, in the wake, no not wake, but the shadow of such profound grief. And that is truly something, something amazing and unexpected.

And then, through some routine blood work in April 2014, and a visit to a hematologist and bone marrow biopsy in May, I was diagnosed with multiple myeloma. And so, yes, for me right now it’s multiple myeloma, but that is not all, there are still highs and joys, and the mundane and the rest, but something like cancer does cast a pretty long shadow.