Checking Back In...by Fay

Today I got a call while I was picking up Dylan from school.  It was Josh - telling me that his hair is falling out. We were told that it would happen, but it is still startling to see it happening.

What I'm about to say is negative. I know it. And, after I say it, I also know that we are fortunate. Things could be worse. People are worse off than us. I shouldn't complain. But, knowing all that, still doesn't make things any easier.

Things haven't been great. We are both on edge and snapping at each other. The drive to and from Radiation each day isn't pleasant. We hardly talk. Though we do laugh about the fact that not a drive has gone by that we haven't heard Taylor Swift's, "Blank Space" at least once and Maroon 5's "Sugar". It's OK for me but I think Josh might go crazy. 
The whole experience is really wearing me down. I can't imagine how it must be for Josh. You can't really imagine how much of a time sink it is. And, the emotional toll it is taking. Today was treatment #14 out of 30.
In an attempt to have something to look forward to, we plan one day a week that we get to buy lunch on the way back from treatment. So, on Wednesdays, we've been going to The Habit for burgers and fries.

Josh is definitely tired. When I came home from taking the boys to school this morning, he was already back in bed and asleep. He alternates between naps and walks.

If we haven't said thanks lately, please know that we feel thankful to have such supportive family and friends. The kindness does not go unnoticed. I feel like I'm just barely keeping my head above water - I always plan to send thank you notes but...
Thanks Mom, for the chicken pot pie, helping on the Rainforest diorama and for being such a good listener. We couldn't do it without you.
Thank you to Esther for taking care of Hayden.
Thank you to Monica and family for the beer. Josh really appreciated it. All the little notes and flowers mean so much, too. Monica - I guess he won't be needing your hair cutting services again any time soon.

After writing all this, I realize that I need an attitude adjustment. Starting tomorrow, I will re-set and start fresh. Wish me luck!

Here's a look back at that first shave after surgery.

Radiation Effects - Week 3

I suppose it was inevitable - my head is red with a bad "sunburn" AND more fatigue.

The sunburn hurts. Between the lotion three times a day and aloe vera I'm not sure what more I need to do.

The fatigue is incredible and is expected to get worse. I thought my daily exercise plan would give me a shot at fighting it. I still get my exercise and just take naps at other times. I will have small times where I have energy and then others when I don't.

We took Hayden out of school early on Friday because he has shown interest about where I go everyday. Before treatment began, Dr. Swift said that it can be healthy and helpful to show children the mask and the radiation machine. The Radiation Technicians are so wonderful and explained everything to him. He was a bit intimidated and a little scared, but in the end, it was a good idea.

With Hayden at the controls and speaking to me over the intercom system I was certain I was in good hands. I don't even get to see the control panel!

 

Visitors and Radiation Week 1-2

Week 7 of recovery from brain surgery and I'm officially RECOVERED - from brain surgery that is. I can lean all the way forward without the vice like pressure. I'm still working with Speech and Occupational therapies but that has been put on hold until I finish my Radiation Treatment.

Today, I'm definitely feeling the effects of radiation. I still plan to walk 4 miles everyday, but it will be incredibly hard. I'm exhausted. I slept about 10 hours last night and the night before and am still taking 2-3 naps a day. The radiation is a cumulative effect and I'm already this tired!

Julie and Chris were kind enough to read my last blog when I was complaining about my Doctor's order of a 1 beer limit. I said something about the Doctor not specifying how large of a beer. Well, they were awesome and brought me a fairly large beer.

Victor, Saori and Shoka came up for another visit from Southern California. It was so good to see them. Enjoy your trip back to Japan Shoka and Saori! See you again soon.

Saori, Shoka, my beer and Chris

It's been awhile since I have seen this view - Thanks Julie

One Mile Times - Just to see how I am recovering from surgery and how the radiation fatigue impacts me....

Week 4 - 8:51
Week 6 - 7:52 - Ran on 3/16 - Started radiation 3/17.
Week 7 - 7:19

I will probably rethink this 1 mile plan. Maybe like hours walked/run during the week. I need to think on it.

Many thanks to everyone that has helped keep me and my family's spirits up with cards, texts, email, visits, etc. I still have an uphill battle and my down days but as I write this post I can't believe how far I've come. Radiation and Chemo doesn't have anything on the horrible recovery process from surgery.  Mental State: feeling fortunate

For those that are interested, I've uploaded the entire video of the "Cancer Killing Machine". The machine takes two x-rays to ensure I'm lined up correctly then the radiation begins at 3:40.

Radiation Treatment & Check-In with Dr. Swift

Clink to enlarge - Hard to see, but the Pink Area receives 100% radiation

3 down! So far, so good. Although the mask is too tight, I'm happy with how the radiation is going. Really, getting our car back from valet takes 5x's as long as the entire time I am in the room. Actually, it takes more time parking than we are actually in the hospital.


The mask is put on, and then the entire cancer killing machine (my technical name) rotates around me. It starts above my face then moves to the left around my head. It's crazy to think that it is spitting out radiation the entire time it rotates. Then it stops, rotates the other way and then I'm done.

The door to the room is crazy thick. They tell me I'm not radioactive, but given the thickness of the door, you would think that I am. 

After my radiation treatment, we met with Dr. Swift to discuss how it was going and to see if I was having any issues. Fay asked him if I could shave my head. We were told by the nurse, after my first treatment on Tuesday, that I should not because it would irritate my skin too much. Thankfully, Dr. Swift said yes! I haven't grown my hair out for six weeks since I was 15. I can't imagine what I would look like. I'm UPSET that Fay asked how many beers I can drink per day during treatment. Dr. Swift said one. ONE. Can you believe that I am limited to ONE. Though, he didn't say how large of a beer....

We had to cancel all physical, occupational and speech therapy sessions this week due to the timing of the Radiation Therapy. But, I've been doing my homework and stretches at home and I have walked 4 miles per day. I've had to nap every day, but I'm trying to limit the naps to 1 hour.

I took a picture of my MRI's the day after my surgery, Feb 10th, to compare with the one from last Sunday, March 15th. Amazing how much of the fluid has been absorbed. 

After surgery on left, 5 weeks out on right

1 Down... 29 To Go

Today was Josh's first Radiation treatment. It was no joke!

The waiting room was NOT awesome. When you first get there, there is a waiting room like any other - chairs, tables, plants, coffee, water, magazines, etc. But then, there's THE waiting room. This one sucks. This is where patients wait in their gowns and it is depressing! Most patients looked pretty sick. Like the walking dead. I kept thinking, we don't belong here.That sounds awful to say, but it's true. It was sad and scary.

We sat there, among them, waiting for Josh's turn to be radiated.  I was so glad they let me go with him. I was actually scared to be left there.  I know it's not the right thing to say, but this Blog is about being truthful and sharing our experiences.

Once inside the Radiation Room, it was all business. No small talk. They had him on the table, mask on, lined him up, put stickers around eyes, and told him it would just take a few minutes. There was no easing into it. Next thing I know, I'm leaving the room with the technicians and he is left in there alone.

I was brought to another "waiting area" just outside the Radiation Room, which was like a cubicle. I hadn't even been seated but a minute when I saw the BEAM ON sign start flashing. It was SCARY. They were radiating my husband. I actually began to shake. The sign stopped flashing. Then a minute later the BEAM ON sign started flashing again.

A minute later, Josh was walking out of the room and that was it. It was over...but only for today, 29 more to go. When Josh got to me, his face had marks all over it. The mask was so tight that it left severe marks. It made my stomach hurt looking at him. Next, we were brought to a room where a nurse told him what to expect, precautions to take and gave us the times for our next three sessions.

We were told to expect fatigue that will increase over time and will continue for about a month once treatment is over (there will be a cumulative effect).  Josh was told about avoiding sun (more radiation), using sunscreen and wearing a hat, moisturizing the area 3-4 times per day (treat the area like a sunburn), wash with only lukewarm water, use baby shampoo, and do not shave the area. Hair loss/patchy hair can be expected around week 3.

As we were sitting there, Josh asked if it was normal to feel nauseous. The nurse said that some people do experience it and that they would get him a prescription to use before his next appointment. I was thinking that this traumatizing experience was enough to cause anyone to be nauseous.

I know what I was thinking and feeling all day...the anticipation of the appointment, the drive there, the walk into the building, the waiting room, the radiation room, the waiting... I can only imagine what Josh felt.  He showed no fear. And, I don't know how.

I'm sure, at some point, he'll have something to say about it.