The New Order - “Safer at Home “

The Governor has relaxed the “Stay at Home” order.  Now the order reads - “Safer at Home”.  

Most people are working from home.  Schools are still cancelled, so kids are doing online studies.

Most businesses require employees and those who frequent their establishments to wear masks. 

Fort Carson’s PX and commissary not only require everyone to wear masks, but to answer a list of questions regarding their health, stop at a hand washing station, and have their temperature taken before entering.  There are also specific hours for those of us who are considered high risk.  As an aside, I sat in the car once while Jim went shopping and watched the variety of masks that the soldiers and family members wore.  (This is what I do for entertainment!)

Funny animal videos have become very popular, as have “Virtual Choirs”.

 

This is Getting Old

I don’t know how long the stay at home order will be in place.  We are being told that the next few weeks are going to be horrific with deaths exceeding what we saw as a nation in 9/11 and Pearl Harbor.  Dr. Fauci, the nation’s top infectious disease expert is my hero.

Stay at Home Order

The Governor has issued a “Stay at Home Order” for Colorado.  I’ve been home for two weeks now, so it’s nothing new for me.  However, now it is a law rather than as strongly worded suggestion.  I wonder how that law will be enforced.

Video Chats

How do I stay connected to my family and friends during this time of uncertainty?  My siblings and I have been been meeting up via video chats.  It’s pretty hilarious actually.  Also, my church is streaming the service live, but it’s weird taking communion with our own crackers and our own juice sitting on our own couch in our own living room. My Bible study small group is using Zoom to video chat about the lesson.  

How do I keep busy?  I can get library books online mostly. 

My sister  was wondering what time of day she should get out of her pajamas.  I’m still in mine and it’s 3:00 in the afternoon!

Staying Home

Things continue to change, rapidly.

Schools are closed.  People are working from home.

Colorado’s governor declared a “state of emergency”, and the entire state of California is on lock down.  Hardest hit are small businesses and restaurants.

My parents live in a patio home in a retirement community and essentially the virus has restricted them to their home. They cannot have any visitors, and meals are brought to their door.  They are considered high risk.  My dad is 90, and my mom is 87

My siblings and I purchased  a device for them called a “portal”, so that we can video chat with them and most importantly see them.

Oh My ... the Coronavirus has Arrived!

In the past week things have GONE CRAZY!  The coronavirus is now not just a topic of conversation, but THE topic of conversation among all the talking heads, government officials, etc.  Every hour there are new restrictions and new closures.  Grocery store shelves are bare.

A new phrase, “Social Distancing”, has entered our vocabulary.  Fist bumps are the new hand shake. The mandated size of group gatherings has gone from 250 people to 10.

For me, my oncologist has ordered monthly infusions of IVIG (intravenous immune globulin) and  vitamin B12 shots since my lab results were below normal levels.

So here it goes again.  This will be my “new normal”.

Bone Marrow Transplant Reunion

On August 20, 2017, Jim and I attended my Bone Marrow Transplant Reunion in Denver.  As you can see from the photo there were so many patients, care givers, family members, nurses and doctors  in attendance. (I'm peeking over the shoulder of the large man in the orange shirt at right center.)The patients were wearing large buttons that stated how long they had been a survivor.  It has been 8 years for me.  I saw a few people who have been a survivor for 10 or 11 years, but for most patients, their survivabilty was measured in months.

STILL ALIVE AT 8 YEARS POST TRANSPLANT!!

I had my 8th post transplant anniversary this week!  University of Colorado Hospital 's transplant department had a reunion for all transplant patients and their families. Also all the nurses and doctors were there.  It was pretty awesome.  I wasn't the the longest living patient.  I did see a couple of patients who had lived 11 years, but most were recent patients whose survival was only listed in months.

Still alive

It's been six plus years since my stem cell transplant.  I was doing OK until I fell and broke by left humerus (upper left arm) and got a very bad wound on my left shin which needed a skin graft.  All of this was from reaching for news paper on the front porch. (This was Gracie's chore, but she flew to heaven in August after a bad illness.  She was 14 when she died.)

Almost 3 years post transplant

I apologize for not keeping my blog up to date. For the last 6 months I've been undergoing physical therapy, cognitive therapy and occupational therapy. The occupational therapist helped me to learn to drive again. Jim is retired now and is my full time caregiver and can drive me anywhere, but it is nice to know that I can drive if I need to, even if it is just to the grocery store. I enjoyed cognitive therapy the most because it was challenging. My cancer degraded my thinking skills, which of all my new disabilities, was the most disappointing to me. I was considered "gifted' when I was in elementary school and became a Mensa member when I was in college.

New Hips!

Had my second hip replaced in February (the right; the left was replaced in August). So I am a new woman! I'm looking forward to being able to run , do yoga, etc.

Fourteen Months Post Transplant

More good news...I only have to have blood tests every month now instead of every week, and only have to see my oncologist every 3 months rather than every month! Things are stable...

Wonder Woman!

Last week I had a total hip replacement because my left hip had degenerated due to acascular neucroasis (from Prednisone use and from chemo). Once the left hip heals, I need to have the right hip replaced also. I can get a card from TSA allowing me to go through security at airports without too much hassle (I have a metal prosthesis). Right now I am using a walker to get around and am going through Physical Therapy. It hasn't been too much fun.

9 1/2 Months Post Transplant

Some good news...

I drove for the first time in 18 months last night. I did really well too!

My hair is now 1 1/2 inches long and really, really curly and easy to take care of.

Sean, Corrie and the girls (Jenna - 5 , Sophie - 3 , and Rachel - 3 months) are arriving here this evening to stay for a week until they can move into their new home in Colorado Springs. They are moving from the Naval Post Graduate School in Monterey, CA , back to 10th Special Forces Group at Fort Carson. Sean enjoyed grad school and did really, really well.

P.S. I'm on Face Book now.

Seven Months Post Transplant --- Good News!

I had another routine appointment with my oncologist last week. My doctor gave me quite a bit of good news! All my blood counts are stable and getting stronger. I'm allowed to drive again, (I haven't driven for 15 months), fly again, I don't have to wear a mask when I'm in large crowds or at the hospital, I'm in the window now where it is less and less likely that the Epstein Barr Virus will return and trigger another occurrence of lymphoma, and at 18 months to 2 years post transplant, the doctor will start using the "cure" word!

Also, he gave me permission to go back to work. I have an interview tomorrow at Fuller Seminary where I worked before I got sick. My previous position opened up again (with some additional responsibilities in marketing). The work atmosphere at Fuller is absolutely wonderful, and I love to be around students. (I graduated from Fuller Seminary in 2006 with a Master of Arts in Theology.)

All of this good news is pretty amazing considering twice last year the doctor didn't think that I would live. Thanks to all of you who prayed for my recovery. God is good!

P.S. My hair is coming back...curly!

The New Normal

I've been home from the hospital for 2 months today and getting stronger every day. I can walk with a cane now rather than using a walker. I can take a shower by myself, help Jim with a few of the household chores (dusting, setting the table). I don't need a nap everyday, or Jim's help in the bathroom. My occupational therapist (OT) had me playing balance games using Wii Fit, which was a lot of fun, and my physical therapist (PT) had me walk unassisted (no cane) and bat a balloon in the air as I walked around the house.

I've been doing OK emotionally, but I really miss my family. Sean, Corrie and the girls (all three of them including a third granddaughter who is due Feb 4!) will be stationed back at Fort Carson this summer once Sean finishes grad school. Having them so close to us will be a huge blessing. I also miss my parents and siblings. Three out of five siblings and their kids celebrated my parents' birthdays this past week at my parents' new house in TN. Dad turned the big "8-0" and mom turned 77. (We would have been there too, but I can't travel yet, especially on an airplane, because I am immune compromised.)

I shouldn't be too sad because Jim's brother and wife will be spending two nights with us this week, and our daughter Anna will be coming to live with us (to escape an abusive relationship). It will be different having an adult child back at home, and both Jim and I are a little anxious since we've had an empty nest for fourteen years. But Anna needs a safe place to live for now and needs the opportunity to get some counseling.

I really miss my job at Fuller Theological Seminary too. The work environment was so refreshing and I love to be around students. I think I may audit a course next quarter. One of the perks of being a graduate is being able to audit a course at no cost. (All my cognitive skills including short term memory and mentation have returned - thank God!).

So, this is the new normal for me, and I'm not sure that I like it, but it beats the alternative.

Anniversaries

This past month has been full of anniversaries and, of course, we celebrate the start of a New Year tomorrow. A year ago today we got the formal diagnosis of central nervous system lymphoma, and that anniversary followed the anniversaries of the onset of neurological symptoms, an abnormal MRI, and a brain biopsy. So 2009 began inauspiciously and turned out to be a year we won't be sorry to see in the rear view mirror.

On the other hand, the past year reinforced to us the preciousness of relationships. Jim and I learned that, while we love our comfortable home in the shadow of the mountains, when we just have each other in a hospital room, it's enough. Family members sacrificed again and again to lovingly care for us. And both old and recent friends showed us what friendship really means when times are tough.

One key anniversary a week ago was the date we celebrate as Christmas, when God became a tiny human being so that we can have abundant life, both now in the midst of the ups and downs of this life, and in the eternal life to come. That hope has kept us going.

Finally, a quick update. I'm currently off of all IV meds and growing a little stronger each day as physical and occupational therapists work with me almost daily. My intestinal issues are healing more slowly that I would like, but there's progress there as well. My blood counts are stable if not particularly robust yet so I'm able to get out occasionally for a meal or retail therapy. :-)

So Happy New Year to everyone who has been following my saga! Thanks for your prayers and encouraging comments, and may God bless 2010 for all of us.

Home Sweet Home!

Jim has been keeping up my blog, and yes I am home! I came home with two IV meds that I had to continue. One I am already finished with, the other IV will be finished by the end of the week, and then I'll have more flexibility with out being attached to an IV pole.

We have had great in home nursing help. I have a CNA (Certified Nursing Assistant) coming twice a week to help me with my shower, a physical therapist who comes three times a week, an occupational therapist who comes a few times a week, and an RN that comes on Mondays to draw my blood. I also have regular oncologist appointments every other week.

I was in the hospital so long this time (90+ days), and in bed most of that time, that I've lost my ability to walk, but do OK with a walker. My goal is to walk unassisted and to even climb up and down the stairs by myself.

Being home is wonderful. I get to sleep in my queen-sized bed with my husband, Jim! (Two people don't fit in a hospital bed...we tried that.) I don't have to eat hospital food (Jim is a great cook and our friends have generously made meals for us).

Stem Cell Transplant, Day + 93

We're finally home! Denise was discharged from the hospital on Monday, the 16th, but the doctor wanted us to stay closeby for a week or two. So we stayed at the Fisher House until yesterday when the doctor decided that Denise's labs were so stable that she could go home without much risk. She still has some mobility issues and her GI tract is not back to normal yet but staying in the hospital wouldn't have made those any better. It's good to be back in our own space although it was nice to have a nursing staff, housekeeping, and room service at the hospital.

Stem Cell Transplant, Day+87

Early in the week, it looked like Denise might have been discharged today, but her mobility and GI issues have improved more slowly than we hoped. The doctors are shooting for a release Monday now. I'll let you know when we leave. It looks like initially we will go to a Fisher House a couple of blocks from the hospital for a week or two (I'm already staying there). The Fisher House is a guest house for families of patients who are veterans, much like a Ronald McDonald House if you're familiar with them. This one was previously the Commander's Quarters for the old Fitzsimons Army Medical Center, so it's pretty comfortable. Anyway, please continue to pray for rapid improvement in Denise's mobility and GI tract, and for her confidence.