Saturday, May 1, 2010

City of Hope 34th Bone Marrow Reunion

Day T minus 6 to transplant – City of Hope 34th Bone Marrow Reunion Day


Today W received his first chemo treatment to condition his body for transplant. This was to be the strong “stuff” that would likely cause some uncomfortable side effects. In the past, W. has been very fortunate in the variety of chemotherapies he has encountered, he had very little, if any, side effects from it. This time, seems to be the same. Thank you Lord. His appetite is good. In fact, he has been given the directive from the dietician to eat anything he wants. How could life be any better? W is on a low bacteria diet, but other than the foods designated restricted, like salads and fresh fruit, he can order anything. He must be in heaven.

I had an invitation from W’s doctor to attend their Bone Marrow Transplant Reunion today! The City of Hope sure knows how to throw a party and celebrate. They had a barbeque for hundreds, perhaps thousand people. There was food non-stop for 6 hrs. For the kids they had bouncers and carnival games. There was a special atmosphere all around of happy friendliness and celebration. Bone or stem cell recipients wore large round buttons and T-shirts indicating how many years they had their transplant. There were many reunions between donor and recipient. Seeing those 10 year plus badges was very encouraging to me. There were a lot of them. I struck up a conversation with a young mother who had her transplant 7 years ago, diagnosed with Leukemia 1 month after having her 4th child. She gave me some very good advice on how to keep up my husband’s spirits up during this transplant time. Her experience was very valuable to hear about. There were also some speakers and a comedian who did a monologue of his experience as a bone marrow recipient. He was very funny.

Earlier in the day, a blood mobile was set up, but I missed it. I am saving my blood for the Hospital to call me to donate for W. anyway. I did, however, sign up for the World Bone Marrow/Stem Cell Registry, which only took a swab of the inside of my cheek to do. Perhaps I can save someone elses life with my stem cells, like W is having his life saved. Nowadays, collecting stem cells is like giving blood. Can you imagine how many lives can be saved if everyone was on the registry?

T minus 5 days to transplant

W spent the day with his laptop watching episodes of Dr. Who on Netflix. The hospital has a DSL line for its patients to use. This has kept him very entertained. He does feel fatigue, as usual, and takes naps several times a day. Today, I was helping our eldest son pack up and move to a new apartment. Talk about stress. Hopefully, the worst of it is over.

The other day we received an email from a friend. “W, when this is all done, will you let us know if you have any new super powers? We can keep your secret identity secret.” This gave us a chuckle. We will have to keep watching closely for those “super powers”. Perhaps, he will be the next Iron Man or Chemo Man.

Thursday, April 29, 2010

The Calm before the Storm

Although I have very little real experience in being in a tornado, I recall seeing the movie “Twister”, a movie about chasing tornados. Between tornados there is always this eery calm before the next twister. I feel as if we have been going through this calm.

Admission to the hospital has been delayed. One of the cord blood transplants is coming from Europe and flights have shut down because of the volcanic ash spreading over Europe from Iceland. So everything has been moved back a week and we’ll know today if W. will be admitted to the City of Hope to start the process of receiving the transplant.

So as we wait, we have been accomplishing a few things. We now have a new garage and front door and they look beautiful. The contractors, Triangle Construction, were wonderful and I highly recommend them. Walter rounded up enough energy to patch a rather large hole in one of our walls. And I have started my Spring Cleaning, focusing on sorting my stash of fiber, yarns and projects.

I was shocked to learn that I have over 50 lbs of fiber and roving to spin up. This should get me through a lot of cold winters, and then some. Last night I counted all my UFOs (unfinished objects), which amounted to 40 projects. I decided to frog (unravel or “rip-it”) 15 of them. Eleven of them are finished except for sewing up or adding some buttons. That left about 14 active projects to work on. I must have some kind of OCD as I am fighting the urge to start something new.

My next step is to count and sort my yarn---O my! Any guesses as to how much of that I have? I think the local woman’s charity is going to be very happy with my donation of yarn this year, if I can bear to part with it.

W.and I have tried to do as much as possible to celebrate his freedom before he goes into the hospital for a month or more. Fatigue prevents him from doing a lot along this line, but he does like to eat. His big thing was searching for the best Banana Split in the area. I think he has decided that Millie’s Restaurant has everyone beat. He has been stocking up on audiobooks to pass the time in the hospital. We are awaiting to see if he can take his laptop so he can have other means of entertaining himself in isolation. The only thing that we were unable to do is see the upcoming movies that W. wants to see, i.e. Iron Man 2. He will, however, have access to some movies, in the hospital cable TV.

W and I have had some time to talk about worst case scenarios. We are in agreement with decisions that should be made if things should worsen. I think we have a peace about that. However, I cannot escape some little trepidation and fear when reality hits. Nevertheless, I am the sort of person that has not panicked in crisis and God will help me through any event. I have total confidence in this and I trust HIM. In my personal bible study, I was asked to write a psalm. Here it is……

Diana’s Psalm


Praise the Lord for he is good,

His love and mercy endures forever.

He provides courage for the sick and troubled.

He walks besides us leading the way.

He dries our tears and comforts our fears

And folds his loving arms around us.



Praise the Lord for he is good

He provides for all our needs when we trust him

Overwhelming worries become like dust

When we turn it all over to him

Like the sparrows of the earth who are tenderly cared for

He tenderly cares for us to provide everything we need.



Praise the Lord for he is good

He brings people to comfort and encourage us

He lifts us up like leaves on a big tree.

To see the love and support around us on sturdy branches.



Praise the Lord for giving us peace

He gives us hope for a better future

He promises us a home with him eternally.

The troubles of the world disappear.



Praise the Lord for He is good

His love and mercies endure forever.

Saturday, April 17, 2010

The Tornado of Life

W. and I have been caught up in a whirlwind of activity these past few weeks. There has been the medical tests, pulmonary, heart, blood, bone marrow, multiple lab tests, to see if W.s body can handle this very intensive procedure and recovery after a stem cell transplant. There are multiple doctor consults, and education classes to attend. A lot of the time is spend in waiting rooms. I fear I have gained weight by just sitting too much. What a drag.


This procedure is very important. It is a BIG DEAL! This might be W’s only chance at a stem cell transplant and a longer life span. We are jumping through every hoop we can to make this happen.

There is also some sense of finality about this. Although the hope is there for a future, it has some big risks associated with it. The worst case scenario is that Walter will not come home. We have spoken about this possibility and I think we are both somewhat at peace with this and we are both in a mode of sharing every moment possible getting the house ready. For what I know not. We know God is in control and we trust him for whatever he wants for us. I think Walter is trying to squeeze every ounce of strength and energy out of his body and do something with it, knowing that he is likely going to have to rebuild his strength again from scratch after the transplant. I have finally allowed W. to drive again, regaining some sense of independence, he has craved since last January.


The other day, I shared with Walter that I did not have a desk or room for myself. My stuff, i.e fiber and yarn stuff, is spread throughout the house. Now, we have two extra rooms and so he decided we should each get one for our “stuff”. So we have been moving furniture and sorting through our collection of stuff, paring it down and organizing.

Since we were blessed with a tax refund this year, the first in many years, we decided to finally replace our garage and front doors. So in the one week we have left together before he enters the hospital for his transplant, we have been trying to get all this done.

Doing all of this is very therapeutic for our emotional health. It helps distract us from our hidden fears. It helps us be productive and prepare for the future whatever it might be. It gives us a sense of living life to the fullest, a sense of normality, when over the past year it has been anything but normal. God has been good to us. It almost feels like the week before our wedding. All the planning is done. You know your life is about to change dramatically, and you are trying to stay in control of your emotions, your fears, your hopes and dreams for the future.

Monday, April 5, 2010

It's All about Heart!

Perhaps you’ve been wondering what has happened to my knitting in the midst of all this. It may sound that my husband’s health has taken over my life, and to be truthful, it has. However, what keeps me calm is my knitting. I cannot imagine going anywhere without it. It has become my 3rd arm.



With the exciting, yet fearful news that W. will be undergoing a stem cell transplant, we have been swept up in a whirlwind of appointments: lab tests, x-rays and scans, nutrition classes to learn how to prevent food borne infections, biopsies, blood evaluations for every virus known to man. I’m not kidding when I tell you since last Wed to next week, we have over 20 medical appointments! With this always comes the “Sit and wait” time and I try to relax to knit a portable project and this time it is Vanilla Socks. Vanilla socks, in knitting lingo usually means knitting a basic sock pattern, however, this time I really am knitting some Vanilla socks, an off-white elastic cotton I found in my stash that I needed to do something with.


I was browsing through Michaels Crafts, my favorite store, and came across a book called Socks from the Toe Up, by Wendy Johnson. She is a well-known, at least to the knitting and sock making world, who first developed this technique of making socks. The book had a variety of patterns from plain socks, using different cast-ons, different heel techniques and bind-offs, to beautiful lace and textured patterns.


I had never tried a textured pattern before and found one I thought simple enough to do without too much concentration…..a heart pattern.

The yarn is a cotton yarn, spun in boucle fashion with a strand of lycra, that makes it stretch. With summer coming, cotton is breathable and I wanted to try to knit a well-fitting sock that would hug my foot without being too tight. This is my experiment and it is going well so far.

It certainly has sparked the interest of many fellow “waiters” at City of Hope. It’s amazing how easy it is to start a conversation with strangers there. The fact that we are all going through some kind of cancer or health situation binds us all together in many ways. Anywhere we go there in the City of Hope, there is tremendous compassion and support, among the staff and fellow patients and caregivers. All hospitals should be this way.

Friday, March 26, 2010

Who Knew?

Who knew the reason why after almost dying from heart arrythmias, drug interactions and miscommunication among doctors, W would live to see another few months painfree, regaining weight and having the best health in months?

Who knew that all our financial obligations and health care costs would be taken care of so easily without much stress or trouble when W. was diagnosed with cancer?

Who knew that we would be blessed with supportive friends and family who would continue to give us the courage to hang in there, with their love surrounding us?

Who knew that W.’s health would improve so dramatically as to make him a good candidate for a stem cell transplant in four weeks?

God knew!!


God knew that when his attending cardiologist had given up on him, and asked if we considered hospice for his cancer, that W. would live to prove his assumptions wrong. God was not finished with him yet.

God knew that when I was called to the hospital at 3am because W. had been having seizures for over an hour that I would again see him alive and breathing.

God knew that when W. took so long to wake up from his sedation, hearing my prayers to be able to speak with him again, I would be able to carry a conversation with him without any loss of cognition or his wonderful sense of humor.

God knew when I needed to be home with him, driving him to doctor appointments, handling the little ups and downs of his blood levels, his heart issues and very complicated medication needs, my work would generously allow me a family leave to help him recover.

God knew when I asked and trusted him to provide for all our bills, he knew our insurance would be there for us and that there would be few problems among the complicated maze of co-payments and provider reimbursements. God knew that the expensive chemotherapies would be covered. God knew that our application for disability would be accepted with lightening speed allowing up to keep up with health insurance and car payments without my income to help.

God knew that our family and friends would care and be there for us when we needed emotional support. God knew he would give me an extra measure of calmness of spirit and courage to do what needed to be done.

God knew that when we were disappointed that his living siblings were not good matches to donate some bone marrow stem cells to give him the best chance of long remission, two cord blood donors would be found in the world to give him that chance.

God knew that while we had no idea of when a stem cell transplant would be scheduled, we would be notified that he would have one in FOUR WEEKS.

God knows how we love him for loving us, and that no matter what happens, life or death, he has our humble gratitude and adoration for being so good to us and giving us a future.

Saturday, March 13, 2010

Are we there yet? …….No!

I am feeling quite blessed that W. is doing so well. His flaky skin has cleared. It looks soft and smooth as a baby’s skin. A sure fire confirmation that something is going well is that he is growing hair on his body again. W. is looking very human again.

He is getting stronger and able to do more activity, but must still watch himself. He wants so much to resume all of his pre-cancer activities, he forgets that he is not completely whole, yet. His independence has allowed me to go to work for a few hours, however, I have a new worry to think about, W’s stubborness. The other day, we talked about putting together a corner desk our son has abandoned in the garage in pieces, as he moved to his new home. This would make an excellent workspace for W. to start to do things he used to enjoy like model building. He purchased a Skill level 2 model of a Clipper Ship that he spied at a hobby shop. He was anxious to get started. He is moving around better but his strength and stability are not 100%. I cautioned him not to move the heavy desktop part without help. It had taken the two of us, my son and I, to move it to the garage and weighed at least 40+ lbs.

One day, as I left him to attend a work meeting for a few hours, he decided he couldn’t wait any longer. He moved the small pieces of the desk into the house. Mr. Genius thought if he could put the heavy desk top on a rolling dolly, he could roll it into the house. Well, he thought wrong and has lived to regret it. The desk top slipped, sliding down his shins and scrapped them up. By the time I drove up, saw the dolly and the desktop moved from its place, I was horrified to think what had happened. As a rushed in, he was calmly sitting on the recliner with his legs up, looking as calm as could be. He was sitting as proud as a peacock of taking care of his leg wounds all by himself, which extended on both legs from his knees to his ankles. I wanted to wring his neck! I couldn’t help but smile at his resourcefulness, but also was disappointed to have a long ordeal of healing his open wounds without getting an infection, which could be potentially devastating.

It didn’t stop there. He wants to drive again. He wants his independence back. I guess I should be grateful he is wanting to be more independent, but this can be dangerous. The other day, I was baking cookies for a Dr. Seuss event at my preschool. The oven was on, cookies were baking, my arms up to my elbows were covered in flour and sugar sprinkles. Suddenly, W. announced that he wanted to drive to Home Depot to get some screws for his desk. Over the past few weeks, he has started carrying his car keys in his pocket. The light in my head started to go on. I am realizing that the desktop fell on the wrong part of him. If it had dropped on his head, perhaps it would have knocked some sense in him.

I asked if he could wait until I finished my cookies baking. He could not. My whole being was panicked. We were unsure W’s legs were strong enough to brake. He had been exercising his legs and they were stronger but I wanted to make sure I was with him if his strength suddenly failed, at least on the first time. Well, as I was trying to convince him to wait, lo and behold, his guardian angel brought our son walking through the door just then, and I asked him to go with him just in case he needed rescuing. As W. got into the driver’s seat, God made it clear to him he was not ready as he tried to step on the brake pedal to start the Prius. He couldn’t lift his leg high enough to do this simple move. Thank God for small interventions. Lord, help me to prevent him from killing himself……or I may kill him first! ;)

Tuesday, March 2, 2010

Ravelympics/Olympics Come to an End


The Olympic torch has gone out. The Olympics have ended. Let us shed a tear of sadness as it disappears into the sunset.

I enjoyed watching the Olympics this year. My favorites were everyone else’s favorites…the Snowboarding, the figure skating, the skiing, and the short track events. Every American seemed to behave with respect and decorum, even when they were disappointed not to get the Gold or be disqualified. Our athletes behaved very well and I hope gave the world a demonstration of the goodness Americans are all about. I am very proud to be an American.


I participated in my own Ravelympics and won a Ravelympic medal for finishing my Red Splendid Shawl. It came out beautifully. I finished one day before the closing ceremonies.



I’ve been itching to start the Waves of Leaves shawl with my newly redyed wool yarn. This is going to be a challenge for me as lace knitting takes so much concentration. I have already ripped out rows about 5 times to figure out and correct a mistake. Yet, I am determined not to give up. Once the pattern is established, I will find my mistakes sooner and be able to correct them without too much trouble. Perhaps I should think about using “lifelines” on this one. I heard on a podcast about someone who used Knit picks needles to make a lace project. She threaded dental floss into the small holes of the Knit picks needles that were interchangable, knitting as she went and…..Voila! Instant lifeline! What a great idea. I will have to try it.



Hit between the Eyes

Just when things are looking great, there is always something that hits you between the eyes and upsets the delicate balance of life.

My husband was making wonderful progress since coming home from a month long hospital stay in January to address some heart problems. Every day he seemed to be making progress. He was eating well, his diabetes practically disappeared, not needing any medication for it. His heart had been doing well with perfect blood pressure and good rhythm. He was gaining some weight back and his atrophied muscles were getting stronger, allowing him to graduate from a walker to a cane to aid him in his balance. Even his skin was looking wonderful, in response to a new chemotherapy treatment he had been receiving. We were talking about my returning to work part-time and perhaps venturing out to take some day trips around Southern California, which is now so green and beautiful, in response to the recent rains.

Then all of a sudden he woke up with a fast irregular heart beat called Atrial Fibrillation, which seemed to upset everything. Over the weekend the doctors and I attempted to adjust his medications to get everything back in balance. After a very long weekend and a big sigh of relief, I think we did it! However, it reminded me what a very fragile condition W. is in and how I should not take anything for granted.

You may have heard of the term “fragile diabetic”, which is a person with newly diagnosed diabetes, whose blood glucose goes up and down needing constant adjustment in medication. Our visiting nurse called W. a “fragile patient”, meaning that with so many conditions that needs to be monitored, any one of them can throw his body out of balance. I am thinking that God made me a nurse for this purpose, for it would be difficult for the average lay person to manage all of this without some medical knowledge.

Life is full of challenges, isn’t it? I try not to see challenges as God’s punishment for something done wrong, but challenges for what God wants me to learn. He always seems to be preparing me for something…..an encounter with someone who might benefit from the knowledge and experience his puts in my path.