Sunday, May 30, 2010

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.


--Reinhold Niebuhr

Saturday, May 29, 2010

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!

Saturday, May 22, 2010

Day 16 Post Transplant: Waiting for “Engraph”….

After all this waiting, one might ask what are you waiting for? We are all waiting for “Engraphment”. This is when the donor stem cells migrate to the bone marrow and start to produce red, white and platelet cells in the body. This happens around 2 to 4 weeks.

I was talking to W’s nurse and she shared that in most transplants this happens from the 25 to 40 days after transplant. There is a great website explaining this at

Right now Ws blood and platelet cell count is very, very, low. This is the time where preventing infection is critical, since he has practically no immune system to combat it. He is given blood and platelet transfusion periodically. On the outward side he is doing well. He is still getting up to walk around his room and sitting up in a chair for several hours. His mind is sharp enough to joke around with the nurses and his family and doing Soduku puzzles. We have always called him Mr Pun Man. He is a master using word puns. The Recreation Therapist taught him a card game called Kings Corner. It’s a fun solitaire game with two people. He taught me today, and I got lucky winning both games we played. Tomorrow we are going to learn a game called Traps and Treasures.

The inside of W is another story. Lab results are starting to show some slight changes in his heart, lungs, liver and kidneys. Doctors are monitoring this very carefully, as getting them to work together, eliminating the fluid in his body, is becoming a challenge. The major culprit is his heart and history of heart failure (CHF). We knew, if anything, this might be the kink in the chain of risks coming into this process. We need to be praying for this right now. The heart needs to pump effectively to prevent the other vital organs from being affected.

The doctors are pleased at what they see on the outside, as they say, and if they can get the heart working well with medication, all should be OK. I have to say, it is a pleasure to discuss W.’s condition with the City of Hope doctors. They really listen to family members. They give a significant amount of time listening and answering questions. I have never seen such dedicated MDs and nurses in my experience. This is saying a lot as W has been hospitalized in several hospitals and I have worked in others, although be it many years ago.

Knitting: I am still plugging away on the Red Owl Sweater. The Owls are half done. I will be doing the second cable soon. This is an ingenious pattern. As the weather starts to get warmer, it may be too hot to knit wool, so I am trying my hardest to finish this sweater/cardigan.

We've had unusually mild Spring this year in Southern California. I cherish the mild sunny days in May. Flowers are still blooming and my front planter is looking marvelous, especially since I hired a gardener. It makes me wonder why I didn't do this sooner. For over a year I have valiantly tried to care the the yards myself, when W didn't have the strength or energy because of his cancer. The gardener is worth every penny. Seeing the flowers and lawns look so nice just lifts my spirits to no end and I thank God for such a gift of beauty.

Thursday, May 20, 2010

Post Transplant- Day 13: Hair today….gone tomorrow.

After coasting along without any serious side effects other than the usual fatigue, we have hit a more than minor snag. W has been experiencing fluctuation in his blood counts needing transfusions of blood and platelets. He is feeling more nauseated and believe it or not he is losing his hair. After several courses of chemo over the last year, he has never lost his hair until now. The nurse noticed it on his pillow. He would reach up to smooth his hair and end up with a handful. Fortunately, he doesn’t have much to lose. I keep telling him I will bring him one of my knit hats to keep warm, and that now he fits in with the rest of the patients on the ward, who already have shiny pates. We tease each other about this to keep his spirits up. The hardest thing is the nausea. This means he is not eating and it is possible the doctors will put him on IV nutrition to keep his blood sugar under control. He had been eating so well over the last 13 days that I thought he was looking rounder around the middle, perhaps even gaining weight. We are told that it takes longer for a cord blood transplant to start working well. Does this mean that W. will be in the hospital longer? Time will tell.

I’ve been working full-time days lately. After work I go see W. and then come home to catch up on some chores and emails. I think all this is taking its toll on my energy level. The stress at work right now is not helping. This week is Staff Appreciation week, but I can hardly enjoy it.

One thing I will have to share from work is what happened yesterday. One of my coworkers found out that yesterday was our new boss’s birthday, so we planned a surprise potluck. Everyone was to bring something. There were no plans for a gift so I decided to buy some flowers for her from the entire staff. Before she arrived I put them in her office. Unknowing to me, there were four other staff members who did the same after my contribution. Someone came to me and said, “Have you seen the boss’s office? It looks like a garden!”. Apparently 5 other coworkers had brought flowers too. She was definitely surprised!

Status on the Knit Red Owl Sweater….I’ve joined the sleeves and body. Had a little difficulty getting the amount of stitches correct for the Owl pattern, but now have started in on the Owl pattern for the yoke. There going to be a lot of owls. I hope it will look right with the decreases.

Monday, May 10, 2010

Day 4 After Transplant---Coasting along….

Everything seems to be going very well. Day 1 was very uneventful. There was no unusual reactions, except for the normal fatigue. The nurses were declaring his response as “exceptional”. Compared to other patients going through the same procedure, most had been put on TPN, which is IV nutrition, by the second day.

Day 2 and Day 3, W started to feel a little queasy and had less appetite. He had to make a conscious effort to drink some soup and applesauce (one of his favorites). His white cell blood count continued to decrease. This means that the chemo and radiation was doing what it was intended to do and that was to kill the cancerous lymphocytes (white blood cells) and that his blood cell count was decreasing, as expected. However, this low count lowers his immune ability to fight any germ that takes hold. Therefore, he is confined to his room.

He has a very nice private room. It is about 15 x 15 room. It has a beautiful view of the valley and nearby freeway from the 6th floor. He has all the amenities of a hotel: TV, VCR and DVD, a private bathroom with shower and daily maid/PCA service. His nurses are very attentive. One night while using the bathroom he bumped his hand and scraped it on something, making it bleed, while trying to navigate the IV pole around. He wasn’t sure what to do for his bleeding hand so he pulled the emergency cord and all the nurses on the ward came running to help. Sheepishly he told them what he had done, but they were quick to call the doctor to get an antibiotic to prevent infection, knowing how a little infection could be deadly. I have a very high regard for the caring and diligence these nurses demonstrate in everything they do. I believe there is one nurse assigned to two patients.

To pass the time W has his laptop and I pod. He likes to watch movies on Netflix and listen to audiobooks and read the Entertainment and Popular Science magazines I bring him. I come to see him everyday and he appreciates the visits from his family. When he gets “ansy”, he likes to pace around the round and do his physical therapy exercises. He remembers all too vividly his last hospitalization and the debilitated condition he was in from being in ICU for two weeks. He is determined to prevent this from happening again if he can help it. I am so proud of how he is taking an active role in his care and recovery. It would have been easy to let others do it for him, but he has learned this will not get him home any sooner. When his blood count gets to a certain limit, he will be allowed to venture out of his room with the protective equipment on that all his visitors and staff have to wear in his room: gown, gloves and mask.

Another result of the chemo is a lowered red blood count. When the red blood cells, which carry oxygen, get too low, a blood transfusion is needed. W has needed blood transfusions on Day 2 and Day 3. On the second transfusion, I noticed a tag on the bag that said “designated donor”. This means that W is getting the blood from the generous friends and family who agreed to donate. Thank you so much for your love and gift.

It is with utmost certainty that W’s condition is a result of all of people praying for him. God has answered in a very clear and positive way. He is listening to all the prayers you have sent up for W. We both appreciate them so much.

Knitting things that comfort and calm me while W recovers:

1) Brown variegated pair of socks on dpns.

2) Red Owl Cardigan on circular needles

3) Pink lace scarf on circs.

Thursday, May 6, 2010

Happy Transplant Birthday!

“Today is the 1st day of the rest of your life!” Today is like a rebirthing day for W as he had his Stem Cell Transplant today. There were four units of cord blood from two donors infused quickly into W. Nurses and doctors were watching vigilantly for any adverse reactions while this all happened. I sat nearby watching and praying that all would go well. It all took about an hour. At 2:55 pm W got a second chance of a quality of life.

God is very good. There was no reactions, but W. is still groggy from the pre-medication he was given. He just wants to have a good nap. Over the next few weeks, there is likely to be some side effects but these Nurses are amazing. They are so knowledgeable and do everything right down to the letter. A lot of checking and rechecking goes on for every medication, treatment, order, etc. Everyone entering the room wears protective clothing, mask and gloves to protect the patient. There are no shortcuts taken. Being a nurse myself, I am familiar with what should happen and I must say this hospital and staff is #1 in my book.

Today is also National Nurse’s Day. I was surprised that I had to remind W’s nurse of the day. These City of Hope nurses and staff have my thanks and appreciation for their careful care of W. They deserve to celebrate Nurse’s day everyday! It’s no surprise why they are so successful with these transplants. They have the best staff who really know their stuff and care about their patients.

Wednesday, May 5, 2010

T minus 1 day before transplant

W. has been passing the days quite happily watching videos, listening to audiobooks, eating what he wants. These are all his favorite things to do. For him this is a little bit of heaven. Yesterday was the first day, since starting his daily conditioning chemo that he has felt any different. He is getting more fatigued and feeling like he is dragging his body around. Yet, he is still able to converse and joke around, albeit between very long napping. Today is the Total Body Radiation day, where he gets a relatively lower dose of radiation to kill the cancer cells, ready for the infusion of stem cells tomorrow.

This is considered Day 0 of the Stem Cell Transplant. Every day after is like a new life, a birthday! The nurses tell us that the doctors start counting these days to track how likely the transplant will be a success. The magic number is 100. If the patient reaches this without any complications, it is more likely to continue a success. So this is the time to pray, pray, pray.

I have been trying to put in some time at work, while W. is in the hospital. This fills my day as I haven’t had a lot of time to think about what’s next. Our sons have been visiting and keep in touch with whats going on. I am surrounded by caring people who ask how things are going. I am very blessed. I know it is God who is arranging for these people to pop in to give me encouragement. I seem to be running into old friends in the grocery store who I haven’t seen in awhile, as well. Perhaps God felt I needed some uplifting. He was right and I enjoyed the encounters greatly.

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.