All sorts of things

Some of the little things, or the not so little things that make me feel better:

  • A friend checking in daily from her vacation in France
  • A co-worker telling me that seeing me go through this has changed his outlook on letting things “get to him” both at work and at home
  • A friend dropping off soup and flowers after I returned from the hospital
  • Texts from my nephew reassuring me of my beauty
  • Texts from  a dear old friend reminding me of the bonus of being hairless while riding in a convertible – so true!
  • Priceless stories from my oldest friend of herself and others fainting
  • Making people laugh retelling my fainting story
  • Having everyone at work tell me “how great (my) hair looks like this” – thank you Raquel Welch wigs and Progressions Hair Salon and Wig Boutique
  • Knowing my kids are supporting each other
  • My mother reading my large stem cell transplant binder while I cook her dinner and telling me that I can’t have salad or raw vegetables for a year, only to read it myself last night and see that it is only salad bars I can’t eat from for a year – the salad/raw vegetable limitation is only for a month – wait, is that a good thing – well, in the end it is, I am incredibly relieved and I’ve gotten a lot of laughs telling that story too
  • Waiting to leave the house with my buff on after a long day of wearing my wig (gets very itchy) and having Scot come downstairs looking like this:

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  • Reminders from those who have known me since I was born that I was bald until I was two years old
  • A former teammate and my cancer buddy reminding me that I am an athlete and that cancer is my competition right now
  • And all the love, emails, messages, texts, and comments on the blog from family and friends alike from near and far – you are all loved right back

P.S. Wearing that blouse and that buff, my kids and I determined that I looked exactly like Lucille Ball in the I Love Lucy episode where she is stomping the grapes (the blouse has poofy sleeves and I was also wearing a skirt) believe you me it was true!

Ruse

Saturday afternoon it was clear that my hair was more than thinning. So as soon as I had a moment, after doing prom make-up, I started hacking off my hair with scissors. Although I had been emotional on and off preceding that, once I started to do something about it I was fine.

I put on my wig and went to take prom pictures where I got lots of teen approval. Came home to Sarah, Demian and the two little ones who didn’t notice a thing different about me.

 Sunday morning I got up early to start preparing brunch for 25. It was a little hot and itchy in the wig. When almost everyone was gone Sarah buzzed my head with Demian’s trimmer – aaahhhh so much better!

Monday I got my pre stem cell transplant cleaning and evaluation done – North Branford Dentists – they were fabulous. I need a few things done, but they assured me they could do it in time, even if they had to work longer hours!

Then I went to work, the big test. By the end of the day I was practically embarrassed to be pulling off the ruse so easily; “your hair looks great straightened, did you do it yourself?”, “love your hair”, “looks great”, “loving it straight”, etcetera.

I am sure some people might be wondering. But thankfully no questions.

Overall it’s not bad, not bad at all.

My reputation preceeds me

I have been feeling, well, I’ve been feeling like myself (yay!) since Monday. I’ve worked out every morning (modified a bit) this week (yay me!). And today when I went for my blood work all of the key blood component numbers are trending up and I am no longer neutropenic. So, while I still can’t shave my legs (low platelets), and I should maybe be feeling tired, which I’m not (low red blood cells), I can garden again and eat sushi if I so choose.

I am feeling very excited by the news.  My body is recovering well from the treatment (or tolerating it well as the doctors like to say) even if I do not know yet how well the treatment worked, a couple weeks yet for that.

I have taken to warning whichever nurse is drawing my blood that I did pass out last week, you know, just in case… The nurse today was shocked, she said, “I would never think that Heather would pass out!” – so there’s that!

Attitude and Support

Attitude and support, support and attitude – they go hand in hand. I am fortunate to have a wide and deep variety of support. I have my family – parents, my kids, siblings, aunts, uncles, cousins, and my husband’s family. I have friends who are like family who I have known my entire or life or 37, 34, 0r 25 years. My book club peeps, my work friends, Trumbull friends, my kids’ friends, basketball friends, friends who are cancer survivors, friends who  are getting cancer treatment, and my Facebook friends. And there is my boyfriend who supports me in so many ways, literally nourishing me, body, heart and soul.

I have been listening to a guided imagery from Health Journeys and a section of it goes like this:

“as the expanding circle of light approaches you with its generous energy, and gently surrounds you, you become aware of a warm presence surrounding you. And looking around in this remarkable light you can see that you are encircled by gentle loving beings, immediately recognizable as allies, loving friends with special gifts and powerful abilities, a whole circle of smiling well-wishers in the bright humming light….all gathered around you, warming you with their protective presence, nodding and smiling.”

I have absolutely no problem, seeing this, feeling this and seeing all the faces, feeling the love and support, because I live it every day.

This week I have received it in spades. Lisa drove me to Boston and stayed overnight to visit the second day, Alison came for a 6 hour visit today, Scot came up and surprised me for a quick 2 hour visit (plus the 2 1/4 hour ride up and back), Sarah comes on Saturday and will stay with a friend to visit on Sunday too.  And then Scot comes back to pick me up on Sunday. I have received loads of emails, texts and phone calls. My nephew Hunter sent me a youtube playlist of videos to cheer me up. Everyone keeps asking if I am bored – I actually don’t have time to be bored!

This support allows me to maintain a very upbeat attitude. The staff here has been regaled with peals of laughter from my room, me with a friend, me alone with a silly video from my sister.  I’ve been trying to maintain some fitness walking laps in the hallway, or like today dancing laps in the hallway with my headphones on.

I had a ton of delays before they finally got the treatment started at 5:00 p.m. yesterday, more than a full day after I was admitted, But I really didn’t get too aggravated. I try to be understanding while staying on top of what I need,  My attitude is appreciated by the staff, who have really been terrific here. It is service like you would expect in a fine hotel.  Every time anyone comes to my room it’s, “Do you need anything?” or “Is there anything I can do for you?”

The love and support from friends and family on top of the confidence I have in my doctor and care team here leaves me generally feeling calm, secure and peaceful.

Don’t get me wrong, I have my moments, I worry about the future, I have mourned the impending loss of my hair (just trying to come up with a solution now) and stress sometimes over all the self-management of my care that is required.

Because, you know, it’s always something…

Today it was chemotherapy and an ever-growing list of other meds (including finding an anti-nausea med that is working), laughing at cat videos, delivery of my bubbly water and a stack of magazines, dancing in the hallways, surprise visits, a completed crossword puzzle or two, godiva chocolate and love from everywhere.  I’ll take it.

Now if I can just figure out how to get some sleep between the dexamethasone and all the necessary overnight visits from the staff!

Next

So, the new regimen also did not exactly do it’s job, so Dr. Munshi at Dana Farber has prescribed a different treatment, CDEP, Dexamethasone, Cyclophosphamide, Etoposide, Platinum (Cisplatin). The four drugs are given in combination over four days, dexamathesaone in a pill and the other 3 via a slow, constant infusion as an inpatient. I am going to Boston late morning tomorrow and will be admitted to Brigham and Women’s (across the street from Dana Farber, where they do all of their inpatient treatment).I should be discharged on Saturday. My understanding is that I will mostly be bored (maybe I’ll blog!). The following week I may not feel great as my blood counts will likely be very low. I will be watched by my doctor here at Smilow and may need transfusions and/or the support of neulasta (again).
And the following week, I may lose my hair – eek. There will at least be thinning – which I can well afford, as long as it isn’t in a big clump right on my forehead!  But, I am mentally preparing to lose it all. And even if not from this treatment then certainly from the stem cell transplant that this treatment is preparing me for, which will likely be in about 8 weeks or so.
Aside from total vanity, losing my hair means that the world will know I have cancer.  Although it is not a secret, I am not “out” at work, nor on Facebook. I just don’t want any pity parties!
The other problem with losing my hair is covering my head, my huge, gigantic head. I did some rough measuring and from my calculations I am just on the outside of the largest size in women’s wigs. I already know my head is too big for women’s hats. So, it shall be interesting…
The best suggestion so far came from my friend Michael, and I quote,”more cleavage”  Yes, there is always that. It reminds me of that old W.C. Fields quote that Ken use to repeat (often),

“If you can’t dazzle them with brilliance, baffle them with bullshit.”

or cleavage, same thing…

Cycle #4

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Lily pads at the Victoria Falls Hotel, Zimbabwe

I started my 4th cycle of revimid/velcae/dexamethasone this morning. My doctor at Smilow would like to see me making quicker progress and would like to add a 4th drug. My doctor at Dana Farber is pleased with my progress and does not want to make any changes at this point. When I spoke to the APRN at Dana Farber late last week she actually said that sometimes with a very quick response there is also a faster relapse, that sometimes a slower, steady response is better. “Sort of like when you lose weight too fast and then gain it all back”, she said. I am happy with Dana Farber’s plan. I have virtually complete trust in them, they are the experts, this is all that they do.

My mom accompanied me to my appointment this morning (for the first time). We had a very long wait in the exam room after seeing the fellow, waiting for the doctor. I finally said to her “You know Mom, if you want to have cancer you need to be more patient than this!”

I did have the flu (influenza A) for about two weeks. So there’s another good thing about cancer, if I had the flu and did not have cancer, I probably would have never known I had the flu, I would have not gotten the rest I needed and I would have just kept pushing myself and wondering why the heck I couldn’t get over this terrible cold – so there’s that.

Now I have two weeks of treatment and then the off week leading up to my daughter’s wedding, which is perfect.  Lots to do, exciting stuff, can’t wait to see my baby girl get married and visit with family and friends from near and far.

(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.IMG_9610

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.

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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.IMG_9304b

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?IMG_9296

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.