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.

Gonna Have a Good Day

Spent some time with Sarah, Kensley, and Minka at a park yesterday afternoon. Tons of texts and calls from family and friends far and near wishing me well, sending prayers and good vibes. And Pepe’s pepperoni pizza with my guy for dinner!

5:00am MRI and 7:30am surgery at New Yprk Presbyterian Hospital-Columbia University.

I got this.

Good Day by Nappy Roots

Home Again

I am home and adjusting to my new energy level and all of my restrictions.

When I got home Sunday evening I had to stop to rest halfway up the stairs both times I went up.

Monday I was feeling much more energetic, unpacking, reading my mail, opening mail order packages (I swear I’m going to stop shopping!) and dealing with some prescription and appointment issues (it’s always something!). Sarah came over in the morning and picked up my prescriptions for me. Of course the one that was most essential was not there, mephron. Mephron is the antibiotic I need to take to keep from getting pneumonia. It is by far the most disgusting medication I have ever taken. It looks like something they would have made for Nickelodeon, it is a neon yellow, thick oral suspension (why not a pill? why?!?!) that tastes like banana-flavored paint thinner.  This is not an exaggeration, that is EXACTLY what it tastes like. So in my “it takes a village fashion” after several phone calls (the pharmacy in Boston, the unit where I was inpatient, CVS locally, etc.) and several hours later my mom had to go out to a different pharmacy and bring me the mephron.

Later in the afternoon Sarah “walked” me. I am supposed to walk daily, but not alone. (I will go over all/most of the restrictions at a later date, I don’t have the energy for it yet. But suffice it to say that any of them taken alone don’t seem onerous, but once you start layering them – oy vey!) Yesterday we went to the beach in East Haven, very manageable. But I insisted on collecting shells. Squatting down, getting back up, over and over again. After a while I realized that I shouldn’t be doing that and stopped.

This brings us to this morning. I felt like I had been run over by a truck. I had to rest in between the tiny steps of whatever I was doing. My legs were sore. I was totally exhausted. Sarah came to take me to an appointment I had at Smilow for a blood draw and if needed, a transfusion of blood products (platelets or red blood cells).  I was sure I would need red blood cells.  Well, let’s say I was sure that I needed a transfusion, or I did too much on Monday or a combination of the two. So, I probably did too much – no transfusions needed – which is actually good news!

Sarah and I headed to Trumbull to pick up Minka and made a quick pit stop at my sister-in-law Lynn’s summer rental on the beach in Milford to drop off a plate that had been at my house.  Great to see her and a bonus as my mother-in-law Lillian and other sister-in-law Tobi stopped by too!

It is so good to have Minka home (of course there are more rules and restrictions connected with her). There is nothing like a sleepy dog as your partner in crime while you are supposed to be resting.

iPhones

I don’t know how people managed to get through cancer treatment without cell phones. 

Although I am kidding I am also grateful to be able to utilize this technology today as I start the stem cell transplant process with the mobilization chemotherapy at Dana Farber. 

This is essentially an all day affair starting with my 4 am alarm (on my iPhone) and hitting the road with Lisa, who slept over the night before. 

iPhone utilization this visit:

  • Lisa kept a list of the questions I wanted to remember to ask the SCT coordinators in her Notes for  me (we’re both in our 50’s and can’t remember sh!t). 
  • We used the Waze app to get here and more importantly navigate the horrendous Boston traffic. 
  • I ended up walking the last quarter mile (yes, the traffic was THAT bad) and was able to text Lisa where I was. 
  • Checking blood test results for labs that were taken an hour prior. 
  • I will be hooked up to this IV pole for 9 hours. But Lisa and her iPhone are my eyes to everything outside of this room. I’ve been able to browse the gift shop and peruse the cafe offerings all with photos from Lisa!
  • And then there is the entertainment portion, Drop7 (me), Farm Heroes Saga (Lisa), Facebook, Instagram, etc. helps to while away the hours. 
  • Also an excellent resource for argument solving; is it catmint or catnip? We were both right!
  • Lastly, but not least, the texts, emails and messages wishing me well today. 

I am ready for this next step and all it brings (both side effects and healing) but I have enjoyed these last few weeks being treatment free, just me. And to my credit (yes, I’m giving myself credit, oh the power of a blog!) I appreciated and acknowledged it daily. 

Addendum: I almost forgot – I used my iPhone to update my blog too!