Monday, October 19, 2015

Day +77: Status Quo & Hand Puddy

Days home: 66

The changes week to week aren't as significant as they were in the beginning.The blog updates may spread out to every two or three weeks. I think there is a way to "follow" the blog so you get emailed when there are changes, but I'm not sure how.

Last week was excited because I started OT. My therapist confirmed I have 50% the strength, speed and use of my right hand compared to normal. My left hand is mildly impaired, but is closer to 85-90% of normal.  I got green hand Puddy!!! Lots of exercises for my hands. Looking forward to seeing changes. Although he does think the majority of this is nerve damage, and will just take time. But our main goal is to get me holding a pen, writing and typing closer to normal.

I have gotten more "steps" in on a daily basis - since last Thursday -  than the entire time I have been home. I count my bike riding in there as well (strap it to my shoe). It shows an increase in stamina overall.  I still nap daily. And today, I think as a result of said steps, I have an abundance of pain in my legs. An evening stroll nets 1.1 miles and about 3,000 this view.....

The beau took me on a drive to Half Moon Bay Saturday and we decided to stop by the Art & Pumpkin Festival. Free admission and handicapped parking! It's fairly open and not so crowded (compared to some of our local art/wine festivals), so it was easy to stay away from dense crowds. We were only there a couple hours so between grabbing lunch and peeking at the art booths, it wasn't overly taxing. There were areas to sit and listen to one of several musicians so plenty of places to rest as well. The sunset on the way home was beautiful.

I'm becoming a crock pot pro. I have made some extraordinary meals in my crock pot.....and it's now and addiction. Dinner made easy!!! Lol. Here is one of my faves.

I added baby bok choy and a ton of spices. When served put grated cheese and avocado on top. Yum!

There has been a lot of positive feedback about my last post on depression. Just as a disclaimer, for those that I worried, I am not in a deep depression. In the 77 days, maybe 7 of them have been "blue". It was something that I wanted to address for those in my support groups, as well as for my friends to
be aware of. Having the support system I have, it's hard to stay down for long. I  have some awesome mentors who I can reach out to, they have been through transplant, and can snap me out of a pity party in a hot minute. It's  good to discuss as I think it's not acceptable for depression to ever be a taboo topic.

I'm glad to get on with outpatient therapy. It wipes me out because its hard, but I love it. I expect that 2x a week I will come home to a 3 hour nap.

Overall things are improving. It may be very slow, but i can tell an obvious change from 30 days ago.
Things you shouldn't take for granted if you are able bodied and these are simple tasks:

  • Taking a fork/spoon out of the utensil drawer
  • Un-twisting that twist tie that comes on just about everything
  • Opening a water bottle or soup stock with the round twist off top
  • Opening a car door with a pull up/out handle
  • Opening a house door (first with the key and then pressing down the leer)
  • Zippers, bottons or hooks....of any kind!
  • holding a coffee/tea cup from the handle
  • carrying anything, no matter how light, with one hand
  • pulling up the sheets when you get chilly
  • putting on or taking off socks
  • tying your shoes
These are struggles for me. Sometimes I'm so weak I have to wait until someone gets home. Sometimes i find the pliers that help. It's humbling reverting back to the skills of a 5 year old. So my friends....enjoy these simple mundane tasks. You have no idea how you will miss them when you can't.

have a great week!

Tuesday, October 13, 2015

Day +70: Riding the waves & Sadness is ok

Days home: 59

I have listed the improvements and challenges (continued or new) below. The improvements are tiny, yet monumental. Some challenges come and go..some days better than others, but still an overall struggle. Hence, foot nerve pain is in both.

  • Nerve pain in feet
  • Strength in legs
  • Write more like an 8 yr old  vs. a 5 yr old 
  • Hair growth - eyebrows filled back in, eyelashes are trying, and I am filling in on top
  • Took 4k or more steps per day at least 3x a week (I am determined to get to 10k eventually)
  • Nerve pain in feet
  • Balance
  • Right hand function
  • Right drop foot
  • Driving
  • Energy
  • Asthma (bummer)

This week I start weekly PT to do the real work. Last week was consult, eval and baseline setting. I will also need OT for my foot and hand. Being right hand dominant, I have two choices: learn to write/dominate with left hand OR try to improve right hand function. There is a lot of nerve damage in that hand.

I also meet up with the pulmonologist about the asthma. :( I still have breathing issues sans inhaler, so I may continue treatment for several months. There is still hope that it is allergy induced. In the last couple weeks, my allergies have pushed past the daily allergy meds I take. 

Being Sad
I wanted to discuss the emotional side of this journey because its not specific to my disease or my treatment. Depression is common in general. It's especially common for the chronically or terminally ill. Depression is one of the five stages of grief. 

Grief is brought on by any kind of loss: job, home, relationship, loved one, health, ability, etc. Its ok to experience this stage of grief. They key is to try not to stay there too long. 

I spent many days crying, screaming into a pillow, throwing things....and I still get upset over having to ask for help to open a bottled water, or dropping and shattering a bowl for the 2nd time that week. It's less and less, but it's there. In time I will get upset and less and less and I accept my "new normal". Acceptance being the final stage of grief.

The fascinating thing abut my journey is that I mourned my healthy self when I was diagnosed. Now I am partially mourning my ill self as it slowly disappears, but I also have new challenges and loss of ability that I have to reconcile. 

I come from a long line of mentally strong (insert stubborn) people, which in my case, is helpful. Before I lost my grandfather last year we discussed this treatment and the recovery. He didn't say "I will support whatever you decide" he said "you will do this, and you will get better" if he just knew. That is what I focus on when a meltdown presents itself.

Hair is a funny thing
Reflecting on my journey, there has also been a hair journey....thought I'd share this collage of my hair through it all. 

The pic just before the blue wig was taken yesterday. Kinda getting a hair line, but it's quite light.

Onwards and Upwards!
Hope you all have a great week. Be grateful, lean on a friend in hard times,cherish the simple things, cry/scream when you need too, thank your caregivers (if you have them), tell the people in your life you love them, laugh often, read a good book (I have recommendations!).

Tuesday, October 6, 2015

Day +63: Joint pain and awe-inspiring stories

Days home: 52 (as of Monday)

This last weeks biggest hurdle was joint pain and balance. Every joint from my neck to my ankles hurt, like they had all been crushed or twisted out of sorts. I have heard of post chemo joint pain, didn't realize it can come on like the bone pain did. It has subsided some, which is nice of it.

The noggin
I pulled out the blond wig again, determined to make it looks somewhat decent for an outing. I think I accomplished it. Just needed some curls.....

Chad and I went out to dinner. I had salmon. And polenta. And hair (albeit fake). It was so nice to feel like I was part of society again. Hooray for celebrating my 60 days illness free! (Minus the brief stay in the ER that one time, and the random asthma issue LOL). However I can say no major infections or fever. Thanks to my dear friends who although wanted to follow through, on a few occasions cancelled plans due to sick kiddos at home.

Blue is still a fave and is fun to wear. I'm normally just in a beanie

PT & Labs
Outpatient PT starts Wednesday. I ha e a feeling it's going to be torture, and yet I am looking forward to it. I have been good about doing my balance exercises from my in-home therapist. However balance is still a big challenge. Also have thrown in an intense core workout to assist with balance. Completed week one, hoping to see some impact in the weeks ahead. Most aqua therapy pools in the county leverage public gym pools which are off limits, so it's just physical therapy .....but anything will help.

Took labs today. I now go every two weeks. So far numbers have been good. There can be a delayed drop in WBC following Rituxan (chemo), so I anxiously await my results to see if I need to go back into "bubble mode"....but so far so good.

In Awe
Today I am giving a shout out to a girl who is awe inspiring. I met her mother through our support group. They are both in the super hero league. Her name is Madalyn and she heads to Chicago this week for this treatment. She is a youngin' of only 18 with a very rare auto immune disease called AAG. This attacks the receptors of autonomic ganglia in the autoimmune system. It's rare, complex and both the disease and treatment make her very ill. This girl has been through hell and back and yet is always smiling. If HSCT provides remission for this disease it's a major medical milestone. Her mother started a non-profit to help families navigate the medical system when a child has a rare disorder.

If you have an extra minute, please go to the link below and vote for "It Takes Guts":
Oh, and tell a friend. Please and thank you.

This grant money could go to amazing awareness and education campaigns in 2016.

You can learn more about AAG here:

Got this card from my work team last week. the irony is that our mascot is a turtle and those are foundation colors.....

Keep on keeping on. Practice patience. Let it be. (My latest head chants). There are chores I still find mindless, boring and dreadful. Yet I am grateful that little by little I have the energy/strength/stamina to do them. Someone posted this the other day, and it really spoke to me.

Hope you are all well. Have a great week!!