This year ---No Fireworks!

How does one account for the worst month in one’s life?

July 4^th was W’s birthday! In the past, our family celebrated it together with a barbeque followed by fireworks in the front yard. This year- no fireworks! We didn’t have the heart to have them without “DAD”. W was still in the hospital and fortunately was moved from ICU to a room facing a west window on the 6^th floor which was the Bone Marrow Floor. He was still having some breathing issues but not serous enough to stay in ICU.

After our family barbeque at home, we visited W, bringing him balloons and gifts. The nurses had earlier given him a small birthday cake but he was unable to eat it due to nausea. We spent an hour celebrating with him. He was getting concentrated oxygen but I think he enjoyed it. We were unable to stay to see fireworks with him but he told us the nurses turned his bed facing the window so he could see the aerial fireworks over Monrovia.

A week after, he had pneumonia and a virus in the blood which was treated aggressively with antibiotics. W tried hard to get better, wanting to do everything possible to return home. He tried to keep up his strength up with physical therapy but constantly battled drops in his blood pressure. He shared with me that on a good day, the nurses talked him into getting masked and covered to be allowed to walk outside his room in the hall. This was the first time he was able to leave his room in 3 months. It helped him feel like he was just a little closer to going home.

Over the next few weeks his condition worsened to the point of returning to ICU. After another bronchoscopy, the doctors informed us that the bacteria in his lungs was resistant to all the antibiotics and his new stem cells were not strong enough to fight the infection-there was nothing else that could be done. Walter passed into his heavenly home with his family surrounding him July 27, 2010 at sunset. I now have the memories of 33 years of a loving marriage to cherish. .

Hospital Transient

Just when one gets comfortable with the way things seem to be going, there is something that throws a kink in the chain of events.


I wish I could say that W’s recovery is going as expected but it hasn’t. It seems that God wants to keep us guessing what he wants for W. We knew going into this stem cell transplant that there might be a few issues, especially relating to W’s heart. Actually the stem cell transplant, after seeming to be sleeping is holding its own. There is definitely something happening, but W’s CHF (congestive heart failure) is testing the body reserves even more than usual. From the Bone Marrow Floor at City of Hope he developed a minor heart irregularity and was moved to ICU. Weeks later, his heart rate and blood pressure was under control and he was moved to a Telemetry unit to monitor his heart. Now, the fluid retention is still an ongoing problem. Fluid continues to collect in the lungs making it difficult to breathe and he is back on the Bone Marrow Floor. Soon we will be reaching Day 60+ in the hospital. The only daylight he has seen is through his hospital window and when they take him to the x-ray department. What a field trip!

I’m trying to stay calm. Do I have doubts? Yes! God, you are in control, aren’t you? You will make him comfortable, won’t you? He will have a nice birthday, right? I thought when he moved out of ICU, it was a signal that it wouldn’t be long to have him home. I shampooed my carpets today in anticipation. The house should be a dirt and germ free home while he is still immune compromised. I want him to come home.

I arrived today to share my ordeal shampooing carpets and find him moving to another floor and in respiratory distress. Every breath is an effort. My, how things can change in an instant, when you not looking! I feel helpless to see him suffering. I’m numb with confusion. All I can do is hold his hand and rub his head and let him feel my loving touch calming his pain and discomfort. Although, medication is the real relief, putting him into an amnesic stupor. Thank God for small blessings.

I try to remember the Serenity prayer….how does it go again? Stress must be setting in…..

The Thing about Setbacks is.......

W's  pneumonia was a setback that wasn’t expected. It was miraculous that in his immune-compromised state, he had not caught some infection until now. I am very gratified that he is in the perfect place to have it treated quickly. The doctors and staff of City of Hope do not wait for anything. They act quickly, for minutes of delay could cost a patient’s life.

As I followed W down to ICU, and after he was settled, I could see that he was discouraged and feeling bad. I shared with him something a co-worker told me about an email he received. It helped me feel hope, even with this set back. I want to share it with you to store away when you have set-backs.

The Little Things

- By Author Unknown

As you might know, the head of a company survived 9/11 because his son started kindergarten.

Another fellow was alive because it was his turn to bring donuts.

One woman was late because her alarm clock didn't go off in time.

One was late because of being stuck on the NJ Turnpike because of an auto accident.

One of them missed his bus.

One spilled food on her clothes and had to take time to change.

One's car wouldn't start.

One went back to answer the telephone .

One had a child that dawdled and didn't get ready as soon as he should have.

One couldn't get a taxi.

The one that struck me was the man who put on a new pair of shoes that morning, took the various means to get to work but before he got there, he developed a blister on his foot. He stopped at a drugstore to buy a Band-Aid. That is why he is alive today.

Now when I am stuck in traffic, miss an elevator, turn back to answer a ringing telephone ... all the little things that annoy me. I think to myself, this is exactly where God wants me to be at this very moment..

Next time your morning seems to be going wrong, the children are slow getting dressed, you can't seem to find the car keys, you hit every traffic light, don't get mad or frustrated; God is at work watching over you.

May God continue to bless you with all those annoying little things and may you remember their possible purpose.

Today Walter had a bronchoscopy (putting a tube with a camera in his lung). This revealed evidence of a fungal infection. As I write now, he is being treated and feeling better every hour, and miracle of miracles his white blood cells are increasing. Awesome! Praise the Lord!

Keep praying. Yesterday W's white blood count passed the magic number of 1000. God is working miracles.

A Turning Point

This last week, we reached a turning point. After 30 something days, W’s doctor decided to a bone marrow biopsy to see if engraphment had taken place. The results were positive. Those little donor cells have been sleeping soundly slowly making blood cells. It is well known that cord blood cells take longer to engraph than regular bone marrow cells. This news was a great relief to me, and shortly thereafter, we have seen W’s blood count start to elevate. Although there is still some fluctuation, there is definite increases going on.

Just when I was ready to celebrate and get ready for possible homecoming in the near future, suddenly, there is a set back…….Fever, infection! W is now in ICU. Although things are uncertain right now, I have confidence that the City of Hope will do everything they can to abate and treat this infection. Everything is happening so fast. In the blink of an eye and within 10 minutes, he was moved with all his belongings to an ICU bed.

I should feel quite blessed and fortunate that W was infection free for the 40+ days he’s been in the hospital. This is a true testament of the good care he is receiving. I am also gratified that this infection happened when his cell counts were improving and not when his immune system was weaker.

Lately, I have been loosing my knitting mojo over the past few weeks. All I have been able to think about is getting the house ready for W. I cannot think about any projects that take too much of my concentration. Time and preservation of my energy has been precious to me. I’ve got to keep healthy and yet, get the house cleaned to reduce the chance of added infection when W does come home. Much is to be done….Drapes & blinds cleaned, a good scubbing of the kitchen and bathroom, carpets shampooed, bedrooms dusted & vacuumed.

I’ve been trying to keep some of my knitting mojo by small projects such as knit hats. I made an owls hat that came out nice. I sewed some buttons for eyes to make it really look like owls. I’m now working on a basketweave hat. These mindless projects will likely be donated to Hats for the Homeless.

Plumb flabbergasted.....!

Until now, I have felt I was handling everything fairly well. All the daily things are being done, bills paid, house in some order, work is plugging away, car taken for servicing, W is being cared for at he hospital. No worries…..so I thought. Then my peace was shattered…..


The other day, I sprug a leak in my refrigerator hose for the ice maker. Coming home to a counter filled with water was not great. Yet, no damage seemed to be evident. Also I noticed a lot of water around my lawn sprinklers that should not be there when sprinklers are off. So now I have two plumbing leaks to worry about. Plumbing was W’s job. I had no clue how to start to fix it. So I talked to W about it. He quickly tells me how to do it, but I try turning one of the valves and water shut-offs and it doesn’t budge. I ask one of my son’s to help me and he looks at me blankly. I realize my husband never taught the boys to fix plumbing problems. What do I do now without calling out an expensive plumber to fix a few minor looking leaks?


I pray…Lord, help me figure out how to fix this!. I get a “Plumbing” how to book. I get some tubing that I think might fix the refrigerator leak and I get the water shut off on my Kitchen cold water to keep the spray from ruining anything else. I am stressed and fretful. I cancel a dinner date with my brother’s family, who was going to take me out for my birthday, so I can work on this while I still have weekend left.

Lo and behold, God answers my prayers. Instead of showing me how to fix it, he sends two people to fix it. My brother brought me my dinner from the restaurant, and also brought his tools to fix the refrigerator leak. While waiting for my brother to show, God sent over my gardener who said he would fix the sprinklers for a reasonable price. I thought how good God is!

I never appreciated enough all the things my husband did. He was Mr. Fix It. Now that he is not able to Fix It, it leaves a big hole in our ability to keep the house fixed. Thank goodness, we have a God who can send us people to help us. He continues to provide for my needs. I am so grateful and very humbled by His provision.

Caregiving: When the going gets tough…..

This has been a hard week. Stress at work, working 8-9 hr days, under a new leadership style, stress with the ups and downs of dealing with W's nausea, lack of appetite and low blood counts, the stress of not knowing when “engraphment” will take place, or if it will ever take place. And then, when you have time for yourself, you keep giving… trying to support other family members with their health needs, and trying to cope with the stress of handling the house alone. It takes its toll on a person.

This week has left me weak and exhausted. In attempts to gain some control of my life, I have decided to take life slower and say no to over ambitious plans to clean my house. I was reading a pamphlet I was sent called “Caregiver Guide for Bone Marrow/Stem Cell Transplant” by National Bone Marrow Transplant LINK. It says “Caregivers experience the same, if not more, distress than the survivors themselves and are usually less likely than survivors to get the help they need”. How true this is! I ask myself, “Who has the time?” It’s not like you can check out of everything.

Well,…maybe you can, but this is not an option for me. As one takes on all of this responsibility, including the superhuman emotional strength to try to keep W’s spirits up, no one realizes, including the caregiver, that this awful sick feeling deep inside making one weepy could be “depression”, which is difficult to control and climb out of. Any little thing can make the world so overwhelming to cope with. It’s like falling into a deep empty hole in the ground without a ladder. Perhaps it’s time to go back to the Prozac……..

Can it get any worse? Apparently, it can, but I’m not ready to share that yet. The worst of my nightmares is about to come true. It’s like an episode of the old TV series, West Wing, where President Bartlett, makes up a terrorist scenario to scare his daughter into taking her Secret Service protection seriously and it actually comes true a season later. I predicted a scenario for one of my sons, and I fear if things don’t change drastically, it is likely to come true. The results of making wrong choices. Is it dejavu or premonition?

So I reach into my coping bag, full of “detachment”, “denial”, “anger”, “hysterics”, “lethargy”, “heart-sickness”, “meet a friend”, “going to a movie”, “buy something”, “binge eating”, “prayer”, “isolation”, “courage”, “crying”, “helplessness”, “sleep”, “mutism”, “suffering in silence”, and what do I pull out…….?

Serenity Prayer

God grant me the serenity

to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to peace;

Taking, as He did, this sinful world

as it is, not as I would have it;

Trusting that He will make all things right

if I surrender to His Will;

That I may be reasonably happy in this life

and supremely happy with Him

Forever in the next.

Amen.

--Reinhold Niebuhr

Owl Sweater Progress

I'm on the home stretch for finishing the sweater.

First owl pattern is done. I've decided to make a second row before I end the neck.

I want to sew some pearls or beads for eyes. Which one look good to you?

Old Beady Eyes!