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.

So Much To Say & So Many To Thank

Where do we begin? How can we possibly express how grateful we are to all of you? Thank you just doesn't seem enough. But...THANK YOU for all of the love and support you've shown our family - the cards, emails, texts, posts - all the kind words, the visits, the beautiful flowers, the meals, the groceries, the home baked cookies and apple pie, the Nothing Bundt Cupcakes, the thoughtful Care Packages from near and far, the custom made candles, for dinners, magically, from Ohio, for taking the boys out for some fun, to the teachers who care about and keep an eye on our boys, to Monica for carefully shaving Josh's head when I was too scared to, to my mom for squeezing onto that tiny cot with me in that horrible hospital room and our family for caring for and loving our boys, for driving the boys to & from school, for talks on the phone to keep me calm while Josh was in surgery, for walking with Josh, for Julie who somehow always swoops in at the perfect times, for the continual positive thoughts, for the generosity and for the gift of true friendships...
It has all meant so much to us and has been a huge part in getting us through these rough times.  It's such a good feeling to know so many people care about us - right here at home and from all over the world, including Josh's awesome Streetboarding family.
Thank you for keeping Josh's spirits up and giving him motivation to keep on...
Love,
Josh, Fay, Dylan & Hayden

Bran Tumor Surgery Recovery Progress - 4 weeks

Week 4 - Not much has changed with therapy sessions since week 3. 

Occupational Therapy: I requested my strength to be tested again because I've noticed a significant improvement. I was shocked to learn that I have only increased 5 lbs of strength in my right hand! I thought and expected my hand was nearly as strong as my left. I'm still at about 50% of my left hand!  Disappointed for sure.

Field of Vision Test

I took a field of vision test to rate my processing speed, divided attention, and selective attention. I was nervous to take the test as it could have a possible impact on my driving. A small car or truck would flash in a white box (very briefly) and I would have to click on which one I saw. Then, in addition to the object in the box, either a car or truck would flash somewhere on the computer screen (out of my direct line of vision - testing my peripheral vision). I had to determine if it was a car or truck and click on the area that I saw it flash (see picture). The speed of the flashing objects increased quickly and greatly. The test was really hard. Thankfully I passed at "normal" in all categories. 


I continued to practice at the fairly simple task (video below). The first video is my left hand compared to my right (dominant but weak) hand a week ago and the second part of the video was taken today.  I think I may have mistaken strength for dexterity.


Speech Therapy: I was pretty tired today and didn't do that well in speech class. I was having issues describing attributes of items, like a tree or house.  Needless to say, I was glad when it was over. I have some homework to complete when I'm not so tired.

I really wanted to use my left hand

Physical Therapy:  
Nothing new to report after my Physical Therapy session. However, my friend Julie, was kind enough to take me on my first hike this week. We made it much further than I planned - 5 miles at Rancho San Antonio. Barbara, a friend who is a physical therapist, offered to help me try and straighten up and walk better. The kindness of friends is really helping me get through things.


State of Mind: I've read everywhere that it's important to have a daily exercise routine in place before going into radiation therapy to help combat the fatigue. I will attempt to walk 4 miles every day and run at least 1 mile every week. I may need to adjust as necessary but I'm going in with this plan. I'll add a radiation section next week to keep everyone updated.

I feel for Fay for having to drive me to the thousands of appointments and I appreciate it very much. I know I don't make the drive any easier - sorry Fay!

We will also need to cancel all future therapy sessions and work around the radiation schedule. Occupational and Speech therapies are a priority -  in that order with Physical therapy being last.

Feeling "irritated" in moving into this new phase, which is an upgrade from last weeks feelings of being "defeated"

"Thoughts, feelings and most of the typing by Josh, organization and editing by Fay"

Recovering From Brain Surgery

Here are a few really good articles about the horrible recovery process after brain surgery. Isn't the brain remarkable? I'm also going to touch on a few of the items I'm having issues/difficulties with.

My brain after 5th surgery. One side is NOT like the other

http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html

http://www.everywhereist.com/20-things-you-can-expect-after-brain-surgery/

• When I lean my head forward, it feels like someone is squeezing my head in a vice. There is fluid on the inside and the outside of your brain after surgery. When you bend over, it creates an uncomfortable, painful sensation.  The more I bend down the tighter the vice gets. This makes things difficult - like putting my shoes on, sitting down, and picking things up. A little more than four weeks out and I'm almost able to bend over completely with no pain. I expect in the next week or so this will no longer be an issue.

• It HURTS to open my jaw. I've noticed this in past surgeries and always dread this. They cut the muscles that connects your mouth to your hairline during surgery. Put your finger on your temple and close and open your mouth and you will see what I am talking about. Eating has been fine, but yawning is painful and the dentist today was excruciating. 

  

  No fashion comments - Notice the lean

  
  
  "If your operation was near your temple (between the side of your eye and your hairline), you may find that your jaw is stiff and painful a few days or weeks after surgery. You may find it difficult to open your jaw. This is because the surgeon had to move or cut the muscles of the jaw during your operation. The stiffness gets better by itself in a short time. Making chewing movements or chewing gum helps." http://www.cancerresearchuk.org/about-cancer/type/brain-tumour/treatment/surgery/after-brain-tumour-surgery#wound

• Sneezing and Coughing: I think the body knows that it is damaged. My first sneezes were on 2/28, yes I recorded the date because I hadn't sneezed since my first surgery on 2/2. Oh yeah, it hurt. I was finally able to blow my nose without pain on 3/6. Coughing is a different story. It still hurts.

• Bumps: Driving over the smallest bumps on the road hurts my head like crazy. The drive from Stanford to our house was the worst 22 miles. I would cringe when I would see the car in front of me hit even the smallest of bumps in the road. This subsided about 2 weeks into my recovery.

• I can count the number of T.V. shows I've been able to watch on both hands since my surgery. The effect of the brain surgeries on my attention span is very REAL - it's been getting better with time, but it has been slower than I've experienced with my last two surgeries.  

We had a follow up with my Epilepsy doctor on Tuesday. I have physical, speech and occupational therapies on Thursday and Friday, an MRI on Sunday and Radiation Therapy begins this Tuesday, 3/17.

"Thoughts, feelings and most of the typing by Josh, organization and editing by Fay" 

Seizures - 4 Weeks Out

Seizure Update: I'm extremely happy to report that I haven't had a seizure since I left the hospital, and I don't really remember those ones. I am on two anti-seizure medicines and the ultimate goal is to be able to go to zero.

March 26 is Epilepsy Awareness Day - Wear purple and most importantly read what to do if someone is having a seizure:

 www.epilepsy.com and www.epilepsymichigan.org.

I think I have said this before, but seizures are the WORST part of my life. Worse than the tumor, surgeries, prior recovery, current recovery process, past and future chemo, radiation and anything I have to go through in my life.

I had a major seizure just before this past Thanksgiving. So, I was put on a second anti-seizure medication.  Between November and my recent surgeries, I was having about 3-4 Aura's a week, a type of seizure (also called simple partial seizures). Fortunately, I can sense one coming on and I take an Ativan (in my case, used as a rescue med), lie down on the ground and wait it out. Occasionally, my right arm will start moving uncontrollably, my head will pull to the right, and I cannot talk. During Aura's, I don't lose consciousness and they typically last only a minute or so. Because I can sense them, I have time to put on calming music and I feel like I can stop them, sometimes, by concentrating on the music and deep breathing. I'm very fortunate that I usually feel these seizures coming. Once I get through radiation, I hope to get down to one medication and then over time be taken off  both. This is a huge goal of mine since I don't like the way the medications make me feel.  Thinking and functioning is hard.

In 2012, I fractured the transverse process at C7 in my back when I fell during a seizure at work. I was alone in my office and  was unconscious for about an hour before coming to. My neck was extremely sore for a few weeks and the nerve running down my left arm was sore for nearly a year. Moving my arm at all during the first month sent a sharp nerve pain down my left arm and was unbelievably painful at my elbow. Also, my finger tips were numb. I finally regained the feeling of my pointer finger after about a year.

The fall also impacted my left shoulder. I had been going to physical therapy for about two months up until my recent surgeries. My shoulder was constantly hurting me and I was unable to move it in certain directions. I have about 80% of the movement now. The only benefit of my recent hospital stay was that my shoulder was not used and was rested. I remember being surprised that it wasn't aching like it usually does. It felt a lot better - either that or I had larger issues and was just unaware of the shoulder pain. Now that my right hand is only functioning at about 50%, I'm over using my left arm which has caused my shoulder pain again. I plan to mention this to my physical therapist - I'm clearly broken and what better time to work on my shoulder too.

I have no idea how others deal with the recovery process AND having to deal with seizures. I'm not sure that I could do it...

"Thoughts, feelings and most of the typing by Josh, organization and editing by Fay" 

The Making of The Mask - Pre Radiation Set-Up

Well, today was the start of my radiation therapy. I had to fast for three hours - I ate at exactly 3 hours before and RIGHT after. Fay made sure to pack me lunch.

I checked in and was brought back to get my IV line put in - ON TIME again - awesome. It wasn't like the hospital experience where one nurse missed my vein a total of five times. The nurse today got it on the first try and I was all set to go....then we were told that they were running an hour behind schedule... ugh. So much for on time.

After a few more questions for Dr. Swift, my Radio-Oncologist, and an hour wait we were brought into the Computed Tomography (CT) room where Fay documented the entire process with pictures and some video.


They brought the "mask" out and I was shocked. It was a thin piece of flat plastic about the size of a piece of binder paper. It was placed into a bath of hot water for several minutes and was pulled out with tongs.

The technician then placed the mask around my face and head. Stretching it and molding it around my face. Then attaching the flat piece to the table with plastic clips.

It felt like a very hot blanket on my face. For someone with claustrophobia, it would be their worst nightmare. It's crucial that I don't move my head when I'm inside the radiation machine, so the mask will ensure that I am still.

Before

The plan is to merge, on a computer, my MRI before surgery, my MRI just after surgery and the two CT scans from today in order to identify the exact location and treatment for my tumor. Then Dr. Swift creates a map that the radiation machine uses to "zap" (technical term) my tumor from 360 degrees every day, except weekends, for 6 weeks.

CT scans are pretty quick compared to MRI's which can last 45 minutes to one hour.  After the mask hardened, the technician left the room for my first scan. Since I was asked to keep my eyes closed, and stickers were placed on my eyelids, I couldn't keep track of time but the first one felt like no longer than 5 minutes.

I was brought out of the device, eyes still closed, connected to the CT contrast material and sent back in the machine for another scan, this time with contrast.

After

It started with a voice, over a loud speaker, saying that the contrast was being put into my veins.  Then, I felt a warming sensation all over my body. It slowly got warmer and warmer and then my body got down right hot! It only lasted a minute or so. It was the opposite of the MRI contrast, which sends a cooling sensation. Then after approximately 5 minutes I was done and the Mask was FINALLY removed!

I was in the mask for approximately 15 minutes. As time passed, I became more and more panicky. Especially, with my eyes closed.  I have no idea how someone who has any difficulty with claustrophobia handles it.

We were then given a date for our first radiation appointment (Tuesday, March 17th), my IV was removed, and I was told to drink eight 8oz glasses of water to help flush the contrast from my body, and we were allowed to leave.

The entire experience was surreal...

"Thoughts, feelings and most of the typing by Josh, organization and editing by Fay" 

Brain Tumor Recovery Progress Report

I'm just past three weeks since my brain surgeries and I continue to improve in all areas. Since I am on short term leave from work, this blog has been a good outlet for me to stay busy.

Homemade torture device

Occupational Therapy: I didn't have occupational therapy this week. Though, at home, I continue to work with the Thera-Putty on strengthening my right hand. It's difficult to explain but I have to think about what movements I want to do. Do this: lay your dominant hand flat on a table with your fingers and thumbs together. Now "walk" each finger out starting with your thumb, then the fingers. I need to concentrate on moving each finger on my dominant right hand. It's very discouraging the amount of thought and energy I need to expend to do this simple process.Think about which finger I need to move, then engage, then focus on lifting it up, engage, move it, etc. See video below.

I've noticed my strength and accuracy getting a little better, I have touch typing back (with errors) but I still have a long way to go. I've also asked my father-in-law to build me my own torture device. I'm happy to report that I no longer drag the nut backwards.

Speech Therapy: Don't my speech therapists look nice - well once we get into what my youngest son calls "1st grade worksheets" (he's in 2nd grade) my therapists become...not so nice.  Just kidding, they are so nice. They are always smiling and always encouraging me but, I still can't stand the work. It's the most challenging of my therapies for sure. More worksheets completed and more homework assigned. Recently, they've started an exercise where they give me 4 words and I have to use them in a sentence and then at the end, recall the original 4 words. A week ago, I wasn't able to retain three words.  As the brain swelling goes down and since I've tapered off of the pain medication, I've noticed an improvement.

My Speech Therapists

Notice the clean face shave - I can finally handle a razor (with two hands) however, it took me quite a long time



Physical Therapy: I had physical therapy today as well. It's amazing how far I've come! I've gone from walking around our house in terrible pain to recently running a mile! The only thing is my head still hurts if I lean forward and I still have a right side droop. If I can get my core muscles back to normal and fix my lean I should be back on track. I'm anxious to get back to running and hiking to stay fit and keep my mind off of all of the other issues that I am dealing with. Including the new wrench in the puzzle, fatigue caused by radiation.

Finger strengthening exercises with "Putty"

State of Mind: I'm still struggling. The surgery and recovery process has been extremely difficult on my mind, no pun intended, and body. Radiation begins soon and I'm really worried about the side effects, mostly fatigue and memory concerns. I know I'm fortunate for someone in my position and have come through five surgeries "relatively OK" but, it doesn't always feel like that... Feeling defeated.

"Thoughts, feelings and most of the typing by Josh, organization and editing by Fay" 

Radiation Oncology Appointment - 3/4/15

The appointment went as well as could be expected. A lot of information, in a short amount of time. Speaking of time, we were called in ON TIME - no waiting!

Below are some answers to some of the major questions that were asked in my Radio-Oncology appointment.

Dr. Swift

We will be using Intensity-Modulated Radiation Therapy  (IMRT) for 6 weeks, 5 days a week. I guess tumors stop growing on the weekends?? (Thanks Julie)

The beams of radiation will rotate around my head, 360 degrees, and every beam is slightly different. The focus being on the tumor and little surrounding area. After the initial 30 minute treatment visit, they will then last about 15 minutes. The actual radiation treatment, once the beams are on, is less than 2 minutes. In addition, I will meet with Dr. Swift once a week so he can check in to see if there are any problems.

What side effects can I expect given the location of the tumor, type of tumor and amount/duration of treatment?

Short Term Effects:
Fatigue, possible patchy hair loss, nausea, sore skin, possible headaches from swelling. If I develop headaches, I will be put back on steroids to control it.

Long Term Effects:
Two long term risks were mentioned:
*Possible new tumor (about 15 years on average) could be a benign or malignant brain tumor (1/300)
*Less than 1% chance of needing surgery to remove healthy cells that were damaged by radiation.

What is the sum of radiation that I can expect over the course of my treatment?
The dose is unknown until mapping and CT scan are complete. But for my type and grade of tumor, the dose range is 54-60 unit gray.
A personalized mask will be made (see picture) to ensure I do not move during treatment. I have an appointment to have this done this Friday, March 6.

 


What did the Tumor Board recommend?
Everyone at the Tumor Board agreed with being as aggressive as possible so that we stop the tumor from growing into some very critical areas (motor cortex) and we can prevent serious, permanent long term deficits.

Damage to the Hipacampas?
The Doctor said that they try to spare it if they can. He said that the location of my tumor is above it and not touching it. Therefore, in my case, radiation will not involve this part of the brain.

Will radiation cause difficulty in future readings of my MRI's?
All teams are familiar with reading MRI's of people who have had radiation. No concern.

What, if any, impact will it have on my seizures? Radiation treatment can cause seizures. However, since I already have a history of seizures (I am currently taking two anti-seizure meds) it would be impossible to know if the radiation treatment was the cause.
The ultimate goal is to be taken off of all seizure meds after treatment is completed.

All in all, this was a very informative discussion and I'm proceeding as recommended.

Tumor Location - Click to enlarge

"Thoughts and feelings by Josh, organization and editing by Fay"

Radiation Concerns

I'm feeling very nervous that radiation might impact me more than I expected. Especially, after talking with a family friend whose husband just passed away from a brain tumor.

She was more than generous to take time, even though she is going through so much, to talk with me about some things that she wish she had known before her husband started radiation. She gave me some really good information and good questions to ask the doctor. I'm so thankful to her for our talk.

There are a lot of factors that come into play - there are more than 120 different brain tumor types, different grade levels (how aggressive), types of radiation, amount/length of radiation, and the location of the tumor in the brain that effect treatment outcome.

After learning more about it, I'm really apprehensive about starting radiation therapy. I'm anxious about tomorrow's meeting with the Radio-Oncologist.

National Brain Tumor Society Support

Many thanks to the National Brain Tumor Society for featuring my blog, on Facebook, the morning of my third brain surgery. I've been involved with this great organization now for 10+ years and plan on helping them for many more. 

I wound up having an emergency surgery, which meant that I had three surgeries in a week's time. I'm home now and struggling through physical, speech, and occupational therapies. I am also about to face 5 weeks of radiation followed up with a year of Oral Chemotherapy (Temodar) to address the remaining 20% of inoperable tumor. 

I intend to continue raising funds to fight brain tumors and will be at their San Francisco Walk on May 2nd.

Thank you NBTS - Josh 

"Northern California Brain Tumor Community: While you can't see it I'd like to share the incredible support that was shown to Josh because of each of you...his message reached over 20,000 people, over 100 comments of love and support were posted. Josh we are all pulling for you this week! "

Up and Running

So, I attempted to run today. The plan was to run/walk for 1 mile just to get a new baseline. Of course it was dependent upon how I felt. It's only been a few weeks since my brain surgeries so I told myself I would take it slow - that went out the window. My headache went away in the first 100 meters so I was able to keep running for the mile.

Results of my track workout: 1 mile in 8:51 minutes. While this is far slower than I run, I was happy with the result. I was expecting somewhere between 10-12 minutes with a combination of walking and running. I was dragging my foot occasionally around the track so I expect I wasn't running straight the whole time.

Also, my max heart rate is 180 and I was running at 182 so I won't be pushing myself that hard again for quite some time.

Fay took a picture of my "lean". As you can see, I'm pretty crooked. My body is leaning and it's most noticeable in my elbows. My left elbow is more than an inch or two above my right. I still have some work to do!


On Saturday, I continued to work on my memory and played some brain games with my niece Lola and my oldest son, Dylan. Dylan is so helpful, too helpful - he won't let me do or lift anything around the house.


I showed Lola the 15 different occupational exercises I do with my Thera-Putty which is meant to improve my fine motor skills. Just trying to roll and shape the putty into a round ball is crazy hard, not to mention all the specific exercises I have to do.

I ended the weekend by meeting up with Chris and Julie for a visit and some drinks. They have been absolutely wonderful to our family during this difficult time. Taking the boys out, dropping care packages off, and making us meals.  I don't know how we'll ever repay them!


"Thoughts and feelings by Josh, organization and editing by Fay"