It’s Frankensteen…

Day of Surgery, Tuesday, February 5th

Awake before 2:45 am alarm (Scot was already up for over an hour). Showered and hit the road right on time at 3:30 am. Chose to take the Merritt Parkway, which turned out to be a mistake as a dense layer of fog covered the windy unlit highway. So, just an added ounce or two of pressure on a fun-filled morning!

We arrived right on time at 5:00 am, just when the valet parking opened, went through security, had our passes printed, and then it was up to admissions on the 3rd floor. We were met there to be taken for my pre-op MRI. I suppose I was fairly relaxed as I fell asleep twice during the MRI!

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6:35 am post-MRI waiting to go to pre-op

Typical pre-op meetings and questions: nurse, neurosurgery resident, anesthesiologist, and surgeon (Dr. Sisti). Then at 7:30 am, pretty much right on time, I kiss Scot goodbye (the nurse takes his cell phone number and tells him when he should expect to hear reports, etc.) and they walk me down the hallway into the operating room. Along the way they realize they have not given me a cap for my hair, so as we walk I am trying to stuff my gigantic mass of hair into one of these caps. (I realize now that they probably took it off almost right away, so what was the point?)

I lay down on the table, they tell me they will give me something to relax, adjust pillows and put an oxygen mask over my face and tell me to take deep breaths and I’m out.

I now know that part of the pre-surgical prep included stapling the surgical drape – to my scalp! And pinning my hair back, also with staples into my scalp. So strange to think that stapling things to your head is the way they do that!

At approximately 1:30 pm Dr. Sisti came to the family waiting area to report to Scot that the surgery was successful, they removed the tumor, one of my olfactory nerves was totally crushed, the other one was slightly pushed to the side and that it was very close to my optic nerves.

Waking up in recovery, I suppose is what one might expect post-brain surgery: pain and nausea. Scot just told me the other day that I looked at him and said, “Whose idea was this?”

Visiting rules in Neuro ICU are quite strict, a 30 minute visit every 2 hours. And I would say with good reason. Attempting to engage with a visitor while in intense pain and being extremely nauseous is quite difficult and not helpful. You know what is helpful? Pain meds and and anti-nausea meds which induce sleep. Sleep is very helpful. Not being awake – very helpful. Dilaudid, fentanyl, and zofran were my friends. And the nurses. The nurses were amazing.

Sarah and Scot made the call to keep visitors to the hospital to just family. Definitely wise.

Wednesday, February 6th

The next morning the surgical resident, Dr. Smith, came to visit me, ran me through the neuro tests (this happened many, many times a day during my hospital stay): shining a light in my eyes, follow the fingers, how many fingers here, how many fingers there, how many fingers here, lift your feet up, push against my hands, pull my hands, etc. He left but came back a few minutes later with one more thing: had I smelled coffee yet? I had not. Did I have coffee? Well, I did have a cup of instant Maxwell House they had given me (I was thinking perhaps some of the nausea and headache was caffeine withdrawal, at this point I was 2 days with no caffeine, far from my normal), but I told him it was disgusting and does not really smell like coffee under normal circumstances. However, he was holding a Starbucks cup, so I asked if I could smell his coffee. He kindly complied – and I could smell it – success! Olfactory senses intact!

The next big event was getting moved out of Neuro ICU. Unfortunately, there were not any rooms available. They moved 6 of us to another floor, but not to regular rooms. The increased nausea while physically moving on the gurney was unpleasant, like seasickness, I had to close my eyes.

My first visitors on Wednesday were Kyle and Andreah. Poor things couldn’t find me since the hospital didn’t have an updated record of my location. Somehow they found a helpful person who not only knew where I was but personally escorted them to me. I am afraid I was not really any more exciting to visit Wednesday morning than I was Tuesday post-op. They sweetly kept telling me not to try to stay awake. I think their visit ended with me vomiting. Good times.

Here I am Wednesday morning in my fancy turban. I have to say part of me liked the look – wide turban with curly mop sticking out of the top!

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I’m not exactly sure what the blister on my upper lip was from, assuming the intubation.

Next visitors were my mom and sister Kirsten. They were NOT happy with my situation, still on a gurney with my feet hanging over the end of it, and not in a room. They immediately took action, making phone calls, finding people, I don’t even know what they did. First, the hospital was able to scrounge up an actual hospital bed for me, one where my feet did not hang off the end. I had not realized how much I was missing being able to control the angle and positioning of the bed. Laying only on your back is not comfortable, and requires a lot of adjusting. When I was on the gurney I had to ask the nurse to adjust the back for me.

Nausea and pain continued pretty consistently on Wednesday. The nursing staff alternately thought the nausea/vomiting was a reaction to the anesthesia, or from the opioid pain killers. I suppose we’ll never know which it was.

Shortly after my mom and sister left, they moved me up to a semi-private room where I was immediately assaulted with a wall of tv screens, mine and my neighbors, with both volumes up. I had not realized how I was enjoying the lack of stimuli. Sadly, my roommate had been in the hospital for a month post-stroke. She was somewhat non-compliant and a fall risk as she often tried to get out of bed on her own. It turned out that she had a one-on-one aide to make sure she didn’t do that. This added further to the commotion/noise as the aide watched tv all night, snacked and had visitors herself.

Sarah in the meantime had been keeping watch and managing things via phone from home, talking to nurses and eventually Dr. Sisti late in the day on Wednesday when she called the nurses’ station and he happen to be in the room with me. When she expressed concern about the pain he told her it was likely from the pressure bandage, they agreed that he would loosen it, if I got a black eye, so be it. He cut it a bit to loosen it but left it on. I don’t recall if I had immediate relief but I can tell you that on Thursday I finally felt a little bit human.

Another interesting thing Dr. Sisti said to me when he asked me how I felt and I said “meh”, he asked, “Do you feel like you had major brain surgery? Be cause you did!” I feel that up until that moment he had somewhat downplayed the surgery.

Thursday, February 7th

Thursday my dad and Andrea came for a visit, and I was happy to have some company that I could finally engage with – I think I might have even been up in a chair! They also came with a bag of candy which was also good timing as I finally felt like I could eat something.

Sarah also decided that she was tired of being long distance and took the day off of work on Thursday to come a little earlier than planned. (To complicate this, Kensley got sick with a fever and Andreah saved the day and came to East Haven to babysit! It turned out that poor Kensely had a double ear infection and the flu.)

Also Thursday morning, the surgical resident removed the bandage completely and I had my first look at my staples/surgical site. (See title of blog above.) I was a little surprised to see the staples beyond my hairline, somehow I had the impression that everything would be back behind the hairline.

Also note the lovely neosporin hair gel (blech!). I would not be allowed to wash my hair until I got home.

Sarah arrived and got to know the goings on of my roommate and her husband as well as I did. I suppose it was entertaining if nothing else! It was good to have her company, but I was also glad she had the chance to hang out with her cousins for dinner and an overnight.

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It’s funny how being a little bit swollen makes you look younger! Smooths away some of those wrinkles 🙂

Heading home, Friday, February 8th:

Sarah’s training as my daughter really came into play when she asked a few key questions, at the right time, of the right people to get me discharged and us on the road by 12:30 pm on Friday!

I was finally able to get a good look at the surgical area after washing my hair on Saturday.

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The closest I came to a black eye, a little bit of green and yellow

Home life these last two weeks has been pretty boring: resting, Tylenol, daily walk, more resting, thinking about updating the blog, being too tired to update the blog, rinse, repeat.

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Making it work with staples still in for a visit for Andreah’s birthday

Had the staples removed at Dr. Sist’s office last Thursday, February 14th. He advised me that the meningioma is determined to be a grade II meningioma because of the “microscopic foci of brain invasion”. What this means to me mostly is that the follow-up (MRI) starts in 3 months instead of 6 months.

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Staples removed, enjoying some time with this little nugget

Most difficult limitations are not being able to drive and not being able to lift more than 10 pounds. The 10 pounds comes into play mostly in that I can’t pick up Kensley, finding all kinds of work arounds without actually telling her that I can’t pick her up! And I guess the wound is not very noticeable since Kensley has not mentioned it – and she misses nothing!

In the meantime, I started back in with my multiple myeloma treatment last week. Monday, I have my semi-annual appointment at Dana Farber and Thursday it’s back to New York Presbyterian for my post-op release from Dr. Sisti and treatment at Smilow. And then Monday the 4th, if all goes as planned I’ll be back at work.

The love and support from far and wide has been heartwarming and healing: visits, flowers, cards, texts, emails, Idaho breakfasts (!), all of it. Thank you one and all.

The Hair Story

I have been meaning to write this for a while now. And I’m not sure why I even feel I need to write it. Maybe it’s because losing your hair is such an emblem of being a cancer patient. Or maybe it’s because my hair is a big part of me, literally, my hair is typically gigantic.

So, the prospect of losing it, was for me like for most cancer patients, something I was not looking forward to.

First, to prepare, the trying on of wigs:

I thought it might be fun to try to be a blonde, nope. Shorter wigs are easier to care for, but it just didn’t feel right and soon enough I would have very short hair! I went with the Raquel Welch “Showstopper”. Something about a Raquel Welch wig made me smile.

I learned an important and expensive lesson after I purchased my wig. Connecticut has a statute that requires insurance companies to cover up to $350 towards the purchase of a wig when your oncologist writes a prescription for a “cranial prosthesis”. My wig cost $478. When I submitted my claim it was denied. When I questioned the denial I was told that I had purchased my wig “out of network”. I had never even considered that there would be In network places to purchase a wig. Anyone going through this – read your insurance coverage carefully!

So, after my DCEP treatment, and before my stem cell transplant I was told my hair would likely start to fall out in about two weeks. So I waited. And then this happened.

And this is what it looked like:

The next day I eventually cut it short to my head and put on my wig to go to my stepdaughter Tess’ junior prom pictures. No one I saw even batted an eye.

I found sleeping on that short hair actually hurt. Somehow the short hairs are pushed against the grain of the way they normally lay and it HURTS, a lot. So on Mother’s Day my daughter Sarah came over and we shaved my head. Just like that. Wearing the wig took some getting used to, for instance in this Mother’s Day photo it is clearly falling too low on my forehead!

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I wore the wig to work every day. And everyone thought my hair looked so great! (Very few people at work, a handful really, knew I had cancer.) But wigs are uncomfortable, they itch, they tangle and they are hot, so at home it was often just my bare scalp.

And then there were the buffs and hats.

And everyone’s favorite the hat/hair!

Occasionally, I revealed my baldness in public.

But mostly I wore the wig, itchiness, tangles and all. At one point I even had to pay for a “haircut” for the wig! I needed to make it a touch shorter so it wouldn’t tangle so much on the bottom.

And then the growing out began.

Where it went from chic, to really not chic at all. My son Kyle was always the most brutally honest (not politically correct to share all the things he called me)!

At one point it was feeling oh-so-not-chic-at-all and in desperation I went for a haircut, where she thinned my hair in spots so it would lose some of it’s bushiness. It worked for a bit, although the growing out of the thinned layers was not so great – not sure I would recommend it.

And then there were the difficult times, which for the most part I found humorous (do excuse my mascara circled morning eyes in lots of these, morning hair was often the most “special”).

But one of my all-time favorites was when I sent a bad hair day photo to my nephew Hunter and he came back with the perfect response in seconds!

And I am still waiting for a great blowout…

In the meantime, some good hair days, some bad hair days…

But, really every day is a great day—and to be fair I’ll always have crazy hair!

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365 days past and leaping into the next 366

(I haven’t been blogging much lately for two reasons. One, there isn’t much to say; that is there isn’t much going on in my multiple myeloma world. Two, I’ve been very busy with everything else – a hectic fall photography season and the holidays. So two “good” reasons.)

So this past year has been, well, huge. Just a few days over a year ago I told my kids and my family and friends that I have multiple myeloma. A year ago on  January 5th I started treatment. I got the flu. I had a weekend hospitalization with a neutropenic fever. My daughter got married. I was hospitalized for 5 days for DCEP treatment. I bought a wig. I lost my hair. I had a stem cell transplant. My daughter got pregnant. I went back to work. My son got a dog. I had a busy fall season of photography shoots and editing. My hair started to grow back. I started maintenance therapy. And then the holidays.

The coming year is already chock full of things to look forward to:

  • Sarah’s baby shower
  • A trip to Naples, FL, staying with Dennis and Ruth Ellen and vising many others
  • The birth of my grandchild (sex currently unknown)
  • Graduation of two of Scot’s daughter’s (Maia (college) and Tess (high school)
  • A cousin’s daughter’s wedding in GA
  • Another week in the Hamptons
  • Our wedding (Scot and I)

And the ongoing maintenance therapy. And hopefully that is all on the myeloma front.

And of course the ongoing hair saga. More on that later.

As I wrap up this past year I want to thank everyone again for their love and support. You are my strength.

Coffee, Peanut Butter, Wine, Buffs and the Ocean

My stay at Dana Farber/Brigham & Women’s ended Sunday night with what felt like a miracle.  Not unlike the story of the Chanukah oil/menorah, only in reverse. The last bag of chemotherapy was scheduled to end at 11:00 p.m. At almost 8:30 I decided to start packing up my belongings, just to pass the time. As I was dragging my IV pole around the room, I glanced at the furthest most tube and saw that it was no longer dripping – the chem bag (covered by a colored sleeve to keep it protected from the light) was done all except for what was in the last piece of tubing! We were home right around midnight – total score! (The nurses jokingly teased that I had changed the settings to get out sooner.)

Since getting home I have felt pretty well, nothing terrible, some nausea, some fatigue, mostly just not feeling like myself. Case in point, I have absolutely no desire to have, what most people consider my three staples: coffee, peanut butter and wine,  It is the strangest thing.

On Monday, worried that my hair would start falling out in clumps at any moment (I am unclear as to the actual timing), I went to an outdoorsy store and bought a buff, just so I would have something on my head (see video here on how to wear a buff) in case I suddenly looked ridiculous. I chose a nice neutral shade, a cream that would go with everything. I put it on, and actually thought it looked pretty good, that is until I realized that the nice neutral cream color, absent my dark curls sticking out, will just look like a skull cap, precisely the look I am trying to avoid! (I exchanged it yesterday for a deep purple with fuchsia print.)

In other news, I fainted for the first time in my life on Tuesday. I was getting my first blood draw from my PICC line. It took a bit of time and the nurse was flushing the lines several times and I was feeling nauseous from the smell of the heparin. I told the nurse I was feeling nauseous and lightheaded. She told me to take slow deep breaths, which I did. And then I told her I was feeling really lightheaded. And then, that I thought I was going to throw up. She held a pan in front of me and told me to take slow deep breaths and look at her,  I felt terrible and all I could think was, “That’s it?  I’m in a hospital, with a nurse and all you got is ‘slow deep breaths’ and ‘keep looking at me’!?!? Really??” The next thing I knew I was dreaming, a rather pleasant dream (although I could not recall the details and my sister advises that likely it was a hallucination as opposed to a dream). And then I woke to my name being called and very surprised that I was not home snoozing in bed.  Apparently, I was passed out for about two minutes. But, some IV fluids, anti-nausea meds and a ride home I was fine.

I am continuing to wrap my head around the details, appointments, restrictions, etc. of my upcoming stem cell transplant (SCT),  I spoke to the SCT coordinator today about several things, but I was keen to find out if she thought I would be able to go on my annual vacation to Hampton Bays, NY in August.  And….she did not think that would be a problem!  And not only that but she added that I would be able to swim in the ocean, which is probably my favorite thing to do in the world.

Life is good.  It really is.