Brain Surgery ("It's not a toomah!")

I realize that brain surgery and tumors are not funny subjects, but they say that "laughter is the best medicine." So, let's begin this post with a bit of humor:

 

From Sam's journal entries:

July - Full body CT and bone scans. No indications of a tumor present in my brain. 

October 5 - Had my first episode of flashing lights in my eyes while driving on the freeway. It lasted maybe a minute and then stopped, but it was enough to make me nervous/feel weird about it. 

October 6 - I started having more flashing, but this time it seemed only to be happening in my right eye, and more on the outer, periphery of my eye. It reminded me of strobe lights. The flashing resumed about 12pm and lasted for about 20 minutes. It subsided, but picked up again around 4pm, this time lasting for about 45 minutes. Feeling really weird about all the flashing, I called my eye doctor and was able to get a visit scheduled for the next morning. 

October 7 - Dr. Seeholzer looked at my eyes and explained that what he believed was going on was posterior vitreous detachment--annoying but mostly harmless. He said the best thing to do was to continue monitoring my eyes and if they started getting blurry or my vision became impaired, then I should come back in to check for a tear. 

I forwarded the information to Dr. Buys' office and she called me later tonight to get more information on my visit with Dr. Seeholzer. Dr. Buys didn’t think the floaters were related to the treatment I am receiving (herceptin/tamoxifen), but said we would talk more on Friday when I have my visit with her. 

October 9 - Dr. Buys and I discussed my eye problems. We agreed that we would continue to watch it as I wasn’t having any other symptoms apart from the vision problems. If the vision got worse, or if I developed other symptoms (headaches, nausea, loss of balance) then I was to get back in touch with her. 

October 25 - Had my next episode of flashing in my eyes. Probably lasted for about 20-30 seconds and then dissipated. No other symptoms. 

Mid-November - I began to notice that I was having a hard time concentrating when reading. Letters, especially the far-right letters of words looked like they were disappearing. If I looked at the word “and” it would appear as “anc.” I know “anc” is not a word, but why were parts of the letters disappearing? Also, when I was focusing on a computer screen or phone it was really hard to concentrate. I had the thought that maybe I am looking at screens too much, although compared to most people I spend very little time looking at screens.

I told my acupuncturist that I was having weird vision issues at my visit with her just before Thanksgiving. She recommended that I call the Moran Eye Center to get another opinion on my eyes. 

November 30 - Scheduled an appointment with the Moran Eye Center for January 4, 2021. Problems with vision concentration continue. 

December 8 - This morning for about 20-30 seconds I had more flashing in my right eye. This time it looked like the shape was a diamond and instead of flashing white lights it was a kaleidoscope of colors. Weird. Subsided for a bit, then I had the weird flashing on the side of my eye along the periphery, which has happened in the past. That lasted for about a minute.  No other episodes of flashing the rest of the day.

December 9  - Again this morning I had flashing lights in my right eye. It doesn’t matter if I close or open my eye. The flashing is there. It is still flashing as I write this journal entry. More than two minutes so far.

After the initial flashing this morning a headache set in. I laid down for 20-30 minutes and took some Tylenol. It didn't do much. I said a little prayer to be able to get through the day, and I have! If I don’t shake my head, bend over, or move too fast, the pain is manageable. The flashing in my eyes persisted all day. This is the longest it has gone on. I drove to pick up some pizza tonight and it made me nervous. I can’t see well out of the periphery of my right eye. Reading is a challenge as it looks like words blur together, jump off the page, and even disappear. I am going to go to sleep hoping that will help make the headache go away. I have thoughts that perhaps I have COVID. A severe headache is a symptom of COVID but I don’t have any of the other symptoms. 

December 10 - Today was an emotional day. I woke up around 3am and had a hard time sleeping. The headache was still there and not improving. I was restless for 2-3 hours and then got a little more sleep. I called Dr. Buys' office just before 8am to see what they wanted me to do. I still had the headache, and the flashing lights and impaired vision were increasing in intensity, and I am scheduled to get an infusion tomorrow. Did they want me to get a COVID test? Did they want to evaluate me for some brain issues?

I got a call back about 2 hours later and Sharon (one of the nurses) explained that Dr. Buys is very concerned about my symptoms and she decided to schedule a brain MRI. Not the news I wanted, but I am not really surprised. I knew something with my vision has been weird since October, and just in the last 24 hours the headache on top of it is a cause for a concern. I am scheduled to get the MRI tomorrow morning. My mom will be able to drive me, which is probably the safe thing to do because I really don’t see well at all. 

The headache persisted all day. I was able to rest some in the afternoon which helped due to the lack of sleep, but the headache is intense. Pain killers do not reduce the pain. Again, as long as I sit still and keep my head still, I can tolerate the pain.

December 11 - Today I go in and get the brain MRI. Overnight a miracle occurred. My head doesn’t hurt anymore. I have a very slight feeling of pressure on the front part of my head, but it doesn’t hurt. My vision, on the other hand, seems worse. I was reading my scriptures earlier and it is really difficult to read. The words are jumbled and things are blurry in my right eye along the periphery. I still have flashing. Weird. 

So, my head doesn’t hurt, but my vision is worse. I prayed that the MRI technicians will capture an accurate reflection of what is going on in my brain so that my doctors can confidently recommend a course for action. I also went and walked on the treadmill for 20 minutes since my body feels good. I just can’t see well. It is really good that I won’t be driving today. 

The brain MRI this afternoon was a routine affair. I wish I could have sat up as that would have made my head feel a little better. The pressure builds if my head is not upright.  Later tonight, around 6pm, Dr. Buys called me to tell me that a tumor had been detected on the back, left-side of my brain. She explained that she was already in contact with Dr. Jensen (neurosurgeon) and Dr. Burt (radiation oncologist) and that they were working out the details of the plan they would recommend moving forward. She explained that the initial recommendation was to do a surgery to scoop out the tumor as it appeared to be on the lining of the brain. She said that while brain surgery seems scary and complex (and it is), that she would recommend that I do the surgery as it would most likely offer me the best outcome. Also, with my tumor where it is located, she said this procedure would be considered relatively simple for Dr. Jensen compared to other brain surgeries that he does. 

Dr. Buys also submitted a prescription for dexamethasone (steroid). I picked it up tonight, took one, and will continue to take two each day. It is supposed to help reduce the swelling and hopefully some of my symptoms (vision problems and headaches). Dr. Buys indicated that I should have some relief soon. 

December 12 - The steroid is working. Already I notice some improvement in my vision and I have no headache. It does keep me awake though, which I was warned about. It's nice to have some relief from my symptoms. 

December 14 - This morning was a flurry of phone calls from various coordinators from the offices of Dr. Jensen, Dr. Buys, and Dr. Burt. Tomorrow is going to be a busy day. Here is the schedule:

-10:00 am - Infusion at the Farmington Clinic (I was supposed to get it last Friday, but it was cancelled because I needed to get the brain MRI. I need to make up the infusion before this Friday’s surgery.)

-10:20 am - Consultation with Dr. Jensen (neurosurgeon) - virtual visit

-2:30 pm - Covid test and labs at Farmington Clinic

-3:30 pm - Another brain MRI

On Wednesday, at 9am I will have a consultation with Dr. Burt (radiation oncologist). 

December 15 - Today wiped me out, but we got everything done! Infusion, consultation, labs, Covid test, and MRI. I am anxious to get my Covid test results because the surgery is dependent on me getting a negative result. They told me results should be posted in 24-48 hours. 

The consultation with Dr. Jensen was very informative and reassuring. I feel like I am in very good hands. He reviewed my MRI results from Friday and explained that he expects my surgery to last 3-4 hours. I would then spend one night in the ICU and 2-4 nights on the regular floor. Obviously there are risks to any major surgery, and worse case scenario in his opinion is that my current symptoms would get worse and not better. However, he said that he fully expects that I will see a huge improvement of my current presenting symptoms (vision problems and headaches) during the first 1-2 weeks post-surgery. He recommended that regardless of whether the pathology for the tumor comes back as benign or cancerous, I should do at least one radiation treatment after the surgery, which would most likely take place 2-4 weeks after surgery, if all goes well. 

December 16 - This morning I had a virtual consultation with Dr. Burt. First, we met with the resident, Dr. Rock, who explained the radiation process. Dr. Burt talked with us afterwards and it all seems pretty straightforward. I’ll include details about the radiation process when we get to that point in a month or two. When it is all said and done, radiation may turn out to be the easiest of the three (chemo, surgery, and radiation). 

I felt very comfortable with Dr. Burt and Dr. Rock and am impressed with how they work with my other doctors, Dr. Buys and Dr. Jensen, to make sure I get the best care they can offer. 

Also, after a very anxious day of waiting for my Covid-19 test results, the results were posted tonight around 8:30pm. It came back NEGATIVE! The surgery is a go for Friday. The anxiety of postponing the surgery was killing me more than the tumor. 

December 17 - Today was a day of preparation for tomorrow. I got items prepared for my hospital stay and Daniel and I drove the kids up to Logan this afternoon. They will stay with Grandma and Grandpa for the next couple of days. 

I got a call this afternoon from the Huntsman Surgical Center.  I have to report tomorrow at 6am and the surgery will begin at 7:30am.

From Daniel:

I made the following video in case the doc accidentally clipped the wrong vein and Sam lost all memory of me. 😁

December 18 - We drove to the hospital at 5:00 this morning. Sam checked in at 6:00, signing forms and talking to everyone involved in the operation (surgical team, anesthesia team, etc).

They wheeled her back to the operating room at 7:30. I'm sitting in the waiting room until they complete the procedure (3-4 hours).

Sam is patient 612246 in operating room #1. They have this cool tracking system where I can see Sam's progress, probably to avoid being pestered with questions from loved ones.

I also receive updates via text message.

9:06 AM - Surgery has started, the patient is doing well.

10:15 AM - Dr. Jensen (the surgeon) came out to talk to me. They are finished. He said the surgery couldn't have gone better. Sam's skull parted perfectly and the tumor easily detached from her brain. He believes the tumor is a breast metastasis, which means the cancer moved to Sam's brain. The tumor was sent to pathology and they will confirm or deny the doc's opinion by Wednesday. If Dr. Jensen is correct, then Sam will likely receive one treatment of focused radiation in the next two-three weeks to the area where the tumor was residing, followed by brain MRIs every two months for the foreseeable future in order to detect any other tumors that start to grow, and deal with them (likely via radiation) before they cause any damage.

I'm thrilled! They will move Sam to the ICU and I hope to see her within the hour.

11:15 AM - She knows me! I walked into Sam's ICU room, said something to the nurse (Natalie), and Sam said, "Is that my husband?" 😁👍 She's still waking up.

2:30 PM - Sam is sleeping. They have her on three different pain medications to control the throbbing in her head. The only one I can remember (or spell correctly) is Tylenol. She has multiple staples in her head where they put her skull back together. I've been feeding ice, crackers, and jello to her. I rub her hands and feet, raise and lower parts of her bed to make her more comfortable, and summon the nurses when I can't help Sam myself. It feels good to serve my wife in her hour(s) of need.

6:00 PM - Prior to today, the longest period of time I've gone wearing a mask is six hours (two hours in the airport and a four-hour flight). I've had a mask on my face for 12 hours so far today. I pull it down now and then when I talk to Sam (she doesn't have her hearing aids in), but it hasn't come off my ears since 6:00 this morning. Going for a record! 😷😁

8:00 PM - I have to leave now. I don't want to leave, but visitors are not allowed in the ICU after 8pm thanks to COVID-19. I will come back tomorrow. However, unless Sam is moved to a regular floor, visitors are not allowed in the ICU until 4pm. She is scheduled for yet another MRI at 6am and based on those results, and how Sam is feeling during the day, they will move her to a regular hospital room for the next few days. Visitor hours are much better in the regular rooms (9am to 9pm). 

This is Sam's brain before the tumor was removed. You can clearly see which part doesn't belong in the brain.

See that gray wave moving up from the back of Sam's head? That was the swelling caused by the tumor.

I only included this one because it looks like Sam is angry about something. A tumor, perhaps?

December 19 - I didn't sleep very well last night. Finally got up at 5:30am, anxious to return to the hospital to see Sam. I occupied my time cleaning, doing laundry, reading, talking on the phone, etc. At 9am I called the ICU to check on Sam's status. They had not yet taken her for the MRI. At 10:45am Sam FaceTimed me. She said she walked around (with help) for the first time this morning. They are slowly reducing the pain medications, which she is not particularly happy about. At 11:30am Sam called and said they would take her soon to do the MRI. I decided to come to the hospital to see if they would let me in early. I figured I could wait at home or wait at the hospital. Either way I would have to wait. 

They didn't let me in. They wouldn't even let me wait in the lobby of the hospital. No visitors means no visitors. So, I wandered around outside, made more phone calls, texted Sam from outside her window, ate my lunch in the car, and now I'm sitting in the car updating the blog using my phone as a wifi hotspot. 90 more minutes until they will let me in. I don't understand why the ICU's visitor hours are 4-8pm. Yes, the nurses can give her more pain killers, check her blood pressure, change the dressing on her head, and empty her urine container, but I do other things to help Sam. I massage her arms and feet, help her eat, adjust pillows and blankets to make her more comfortable, wipe her body with a wet cloth, apply chapstick to her dry lips, converse with her, read to her, etc. Healthcare is good, but healthcare plus companionship from loved ones has no equal.

They let me in at 4pm. This is recovery in an ICU during the COVID-19 era. Sam is happy to have the IVs out of her arm and foot. They only use her port now.

This is the back of Sam's head. Did I say "multiple" staples above? I counted 19. I was shocked when I saw her head. For some reason, I thought the incision was much smaller.

8:30 PM - We were misinformed about the visitor hours. Apparently, the 9am-9pm hours only apply to the main hospital, not the Huntsman Cancer Institute. When they moved Sam to her new room this evening, which is just down the hall from her old room, I was unpleasantly surprised to learn that the visitor hours are 4-8pm for the duration of Sam's stay. It's more frustrating for me than it is for Sam. She remains positive. Before I left tonight I asked the nurse if they would make an exception for me on Monday, Sam's birthday, because I'm away from my family for work during much of the year and I flew back to Utah earlier this week. I'll take an extra hour, I told her. I'll take any amount of extra time they will give me. The nurse said she would talk to the manager.

Overall, Sam is feeling much better today than she was yesterday. She walks for a few minutes every hour. She is happy to be using the bathroom on her own (no more catheter). She still has a hard time reading, looking at photos, etc., but that should improve as her wound heals. She has her phone with her, but she doesn't use it much due to the difficulty concentrating. She's in good spirits and has a nice, warm room with good doctors and nurses looking after her.

And she is thoroughly enjoying the lime jello. 😊

I would be remiss if I ended this blog post without expressing some gratitude.

Thank you, Grandma, for taking care of our children.

Thank you, friends and family members, for all of your kind words, thoughts, prayers, and actions. We are surrounded by angels.

Thank you, Heavenly Father, for watching over my dear wife.

I will post another update after Sam's birthday on Monday.