This is a time of slow and careful reflection, as you can well imagine. Despite the busyness of work and family, I still have a lot of time to think. I think about the past year and a half and what we’ve been through. I think about the shock of Walter’s diagnosis and as this news sank in, the journey toward building faith, trust and acceptance that God is in control no matter what happens. Even beyond this, the realization that God chooses things to work perfectly and I have no doubt he will continue to do this in my life.
I think about the little things God has taught me through this experience, the little lessons in character building.
Patience
I always thought that when God was handing out gifts, he had given me an extra share of patience. Nevertheless, he made sure to give me an extra helping with Walter’s illness. There was so much waiting: waiting in doctor’s offices, waiting for lab and diagnostic results, waiting during chemo treatments, waiting to speak to the doctors during the eight hospitalizations Walter experienced, waiting for the morning to come to report a concern, waiting at home to care for him. Although these periods had the potential for causing extreme anxiety, God also gave me a means of calming my heart and hands and listening to him….my knitting. I made Walter arm warmers, hats and mittens to keep him warm. At other times I made socks and hats for others. It was very comforting and productive and each finished object rewarded me for my patience.
Trust
When one hears the diagnosis of cancer, there is a natural reaction to ask God, “Why? Why us? Why now?” When you can get through the shock and disbelief and accept it, one moves through to, “Ok, God. It is there, so will you help us get through this?” There is just no other alternative but to trust that He knows all, He will be in control, and He has a plan.
Compassion and kindness
This is very different from pity and sympathy. Compassion is having a deep heartfelt understanding of another’s plight and imagining what it is like for the other in pain and discomfort. Anyone can “ pity” and have sympathy for another, but compassion goes a step further and does something to make another feel better. I have had a measure of compassion for others, being a nurse as my profession. It’s not always easy to feel the same for a family member, or a person you live with day in and day out. I had to dig deep to show that compassion and caring when Walter was stubborn and I felt he wasn’t doing his part to get better and follow doctor’s recommendations. Despite my fatigue from my 8-9 hr job, I was able to come home to make him comfortable and respond to his needs at a very intimate level. I think he recognized that this was truly from a “Love” for him, no matter how difficult he was. He would frequently say, “How will I ever make it up to you?” His acknowledgement was all I needed.
Courage and inner strength
I suppose it could have been easier to fall apart and let others take over. However, this was never acceptable for me. I have always felt better to have a small measure of control in my life. Looking ahead at the realization of the impact that cancer can do to a person and their future was frequently frightening. There were several times I was so overwhelmed I struggled with depression myself. Yet, there was a realization that a lot of people were counting on me; my workmates and the families and children I serve, my family who looked to me as an anchor in keeping the family home going, and my dear husband who learned to be totally dependent on me, when he could not advocate for himself among the medical professionals caring for him. It took tremendous courage and strength to keep my emotions under control and not break down in a helpless heap of tears. When things seemed overwhelming, I turned it over to God and let him take care of us, which he did in everyway. He lead us to compassionate medical staff at the City of Hope, and he sent people to help us apply for benefits to keep our finances and bills taken care of. He brought generous friends and family who gave us respite and gifts of encouragement. This all helped me have strength and courage to keep functioning, making decisions to get through each day.
Even now, as Walter has passed and I miss him terribly, I keep that courage and strength going as I now have to find a new future without him and a new life. I feel I have become a better person from this experience and hope in some small way I can pass on some of this to those I come in contact with.
“I believe…..Help Thou my unbelief
I walk into the unknown trusting like a child….”
From a Bill Gaither Song
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Tuesday, August 24, 2010
Friday, August 6, 2010
This year ---No Fireworks!
How does one account for the worst month in one’s life?
July 4th 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 6th 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. .
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.
Amen.
--Reinhold Niebuhr
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
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 http://www.cancer.gov/cancertopics/factsheet/Therapy/bone-marrow-transplant
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.
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 http://www.cancer.gov/cancertopics/factsheet/Therapy/bone-marrow-transplant
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.
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.
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.
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, April 17, 2010
The Tornado of Life
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.
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.
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! ;)
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, January 19, 2010
Thankfulness and Compassion
I need to breathe a sign of relief and have a humble appreciation for all the prayer warriors that have prayed for my husband and I. The prayers were answered. W. is recovering from the worst health crisis he has had yet in this struggle to battle lymphoma. These two weeks have reminded me that God is very gracious to heal my husband’s heart and give me more time with him. We hope that he will be home this week.
As I come up for air, my heart breaks for the people of Haiti and the desperate need for survival that they are experiencing. Stephanie Pearl McPhee, AKA The Yarn Harlot, has put out a call to Knitters to help by donating to Doctors without Borders. In answering this call, I can’t help but feel this is such a small gift for a very great need. Yet, we knitters are many and mighty. Together, we can make a difference.
This event makes us realize how fortunate we are to have so many resources. Haiti, the poorest nation in this hemisphere, has very little. It is a wonder to see the capacity for compassion that many have, that would sacrifice their money, time and even their own comforts to help humanity in need. This is what God calls us to in any way we can.
My favorite verse:
Matthew 25:40 Jesus said “ I tell you the truth, whatever you did for the least of these brothers of mine, you did for me.”
As I come up for air, my heart breaks for the people of Haiti and the desperate need for survival that they are experiencing. Stephanie Pearl McPhee, AKA The Yarn Harlot, has put out a call to Knitters to help by donating to Doctors without Borders. In answering this call, I can’t help but feel this is such a small gift for a very great need. Yet, we knitters are many and mighty. Together, we can make a difference.
This event makes us realize how fortunate we are to have so many resources. Haiti, the poorest nation in this hemisphere, has very little. It is a wonder to see the capacity for compassion that many have, that would sacrifice their money, time and even their own comforts to help humanity in need. This is what God calls us to in any way we can.
My favorite verse:
Matthew 25:40 Jesus said “ I tell you the truth, whatever you did for the least of these brothers of mine, you did for me.”
Sunday, January 10, 2010
A Hard Week and A New Purpose for the New Year.
I finally received my computer repaired. The keys now work just fine. Lately, I haven’t had much time for anything and this has been the worst week of my life. My husband fainted in my arms as I helped him to the bathroom on New Year’s night and was gravely ill with heart failure and the severe complications that can result from this. He’s been in ICU since and as of today I can say his condition is upgraded to guarded. I’m just living day to day trusting God to keep me and my husband going. I’ve been sitting by his side daily, trying to help the nurses and communicating with the doctors as they treat him.
Yesterday was a deep sigh of relief as he seems to be awakening and able to answer questions by nodding in his weakened state, despite the tube in his mouth helping him breathe. I thank God for granting this to me. However, he is still not out of the woods yet.
All of this happened at the same time as my two sons bought a home and moved. It will not be easy for me adjusting to the change, but I know God will help me through it. He has always given me a purpose. Perhaps, this purpose is now to take care of my husband full time.
This has been the most challenging time of my life, and I thought raising 3 sons was the challenge. It’s like I’ve stepped into a new purpose. As my last son launches himself on a life of independence, I was beginning to question what next? I’m proud of all my sons and the good independent lives they are leading. I do not worry too much about them. I feel my husband and I have done well in raising them.
I’ve been thinking about how I can knit down my stash of the Acrylic yarn. I love listening to CogKnitive podcast. They are starting a Knit Along for the Mother Bear Project that knits bears for South African children who have HIV. There is a myth that adults with HIV can be cured by having sex with virgins. Many children have contracted HIV in this way, along with the emotional devastation that comes from being raped and loosing ones parents to AIDS. A teddy bear becomes a small comfort for these traumatized children. This would be a great project to start. I’ve made one bear but still have to embroider the face features. My next bear will be a ballerina bear.
So…as I sit by my husband’s side in ICU, I knit not only for my own comfort and peace, but with the hope that as I sit attending my husband, a child somewhere in the world can also be comforted with the bear I make for them.
Taken on Christmas Day 2009
Yesterday was a deep sigh of relief as he seems to be awakening and able to answer questions by nodding in his weakened state, despite the tube in his mouth helping him breathe. I thank God for granting this to me. However, he is still not out of the woods yet.
All of this happened at the same time as my two sons bought a home and moved. It will not be easy for me adjusting to the change, but I know God will help me through it. He has always given me a purpose. Perhaps, this purpose is now to take care of my husband full time.
This has been the most challenging time of my life, and I thought raising 3 sons was the challenge. It’s like I’ve stepped into a new purpose. As my last son launches himself on a life of independence, I was beginning to question what next? I’m proud of all my sons and the good independent lives they are leading. I do not worry too much about them. I feel my husband and I have done well in raising them.
I’ve been thinking about how I can knit down my stash of the Acrylic yarn. I love listening to CogKnitive podcast. They are starting a Knit Along for the Mother Bear Project that knits bears for South African children who have HIV. There is a myth that adults with HIV can be cured by having sex with virgins. Many children have contracted HIV in this way, along with the emotional devastation that comes from being raped and loosing ones parents to AIDS. A teddy bear becomes a small comfort for these traumatized children. This would be a great project to start. I’ve made one bear but still have to embroider the face features. My next bear will be a ballerina bear.
So…as I sit by my husband’s side in ICU, I knit not only for my own comfort and peace, but with the hope that as I sit attending my husband, a child somewhere in the world can also be comforted with the bear I make for them.
Friday, December 4, 2009
Cancer coping
This week has been a very hard week emotionally for my husband and I. The skin pain and itching from his cutaneous lymphoma seem to be increasing intensity. We have been trying to figure out what pain medication will give him the most relief without making him a zombie or worse than this, not able to get up at all. One medication will pretty much knock him out and results in uncomfortable side effects. Another seems to relieve the pain to a manageable level so he can still get around, but doesn’t last long enough and taking too much in one day can cause liver damage. Beyond all of this, it’s the itching that is the most unbearable. This has him so depressed and desperate, even scratching until his tender skin bleeds doesn’t give him relief. We saw a pain management doctor today. We are hopeful that she will be able to coordinate his pain and coping meds to give him some quality of life.
It is not easy to see the love of your life, strong and tall, reduced to a frightened, weepy, pain filled creature, depressed and withdrawn. I want to take away everything that is uncomfortable for him, but am helpless to do so. All I can do is be there and hold his hand or rub his back. I try to be strong and do the things that need to be done that he cannot do. I release my tears of grief and sorrow in quiet when I am alone. I guess I have always been the strong one of my family. My family counts on me to be there and functioning. Even I am realizing my limitations.
I have spoken with my boss to ask permission to reduce my hours to be at home more with W. I also need to conserve my mental and physical energy to work out all the disability paperwork, doctors appointments, medications and daily care for my husband. I am grateful my boss is graciously understanding in allowing me the flexibility to work as I can and take care of W. I didn’t think this talk would happen so soon. We were told, perhaps optimistically, that people with this kind of lymphoma could live a normal lifespan with treatment, but there is no cure. Perhaps it sounded to good to be true. No one said the quality of life would be so compromised. I should have taken the cue from the dermatologist, who first suspected the condition, that this lymphoma was not so pleasant. However, even with this realization, what is one to do to prepare for such a life ahead? No, perhaps it’s better to undergo some denial in the beginning and learn to cope gradually.
I am grateful and appreciate so much the little kindnesses people in our lives have done for us. Being a recipient of such kindness and compassion reminds me not to be so self-centered in my own problems. I count my blessings and know that there are others still worse off that us. God has truly answered my prayers and taken care of our financial needs to keep us going. It has allowed me to return some of his generosity to others as well. What is it called? Paying it forward? Thank you all for loving us.
That reminds me, I have to finish knitting Scott’s socks tonight!
Matthew 25:40 Jesus said “ I tell you the truth, whatever you did for the least of these brothers of mine, you did for me.”
It is not easy to see the love of your life, strong and tall, reduced to a frightened, weepy, pain filled creature, depressed and withdrawn. I want to take away everything that is uncomfortable for him, but am helpless to do so. All I can do is be there and hold his hand or rub his back. I try to be strong and do the things that need to be done that he cannot do. I release my tears of grief and sorrow in quiet when I am alone. I guess I have always been the strong one of my family. My family counts on me to be there and functioning. Even I am realizing my limitations.
I have spoken with my boss to ask permission to reduce my hours to be at home more with W. I also need to conserve my mental and physical energy to work out all the disability paperwork, doctors appointments, medications and daily care for my husband. I am grateful my boss is graciously understanding in allowing me the flexibility to work as I can and take care of W. I didn’t think this talk would happen so soon. We were told, perhaps optimistically, that people with this kind of lymphoma could live a normal lifespan with treatment, but there is no cure. Perhaps it sounded to good to be true. No one said the quality of life would be so compromised. I should have taken the cue from the dermatologist, who first suspected the condition, that this lymphoma was not so pleasant. However, even with this realization, what is one to do to prepare for such a life ahead? No, perhaps it’s better to undergo some denial in the beginning and learn to cope gradually.
I am grateful and appreciate so much the little kindnesses people in our lives have done for us. Being a recipient of such kindness and compassion reminds me not to be so self-centered in my own problems. I count my blessings and know that there are others still worse off that us. God has truly answered my prayers and taken care of our financial needs to keep us going. It has allowed me to return some of his generosity to others as well. What is it called? Paying it forward? Thank you all for loving us.
That reminds me, I have to finish knitting Scott’s socks tonight!
Matthew 25:40 Jesus said “ I tell you the truth, whatever you did for the least of these brothers of mine, you did for me.”
Saturday, October 31, 2009
Finish--itis
Finish-itis, (Please excuse the hypen. It looks better this way)
I haven’t blogged in awhile. I just haven’t had much time to collect my thoughts. Stress has overwhelmed me the last two months. The job: breaking in and adjusting to a new boss, trying to meet the demands of starting school, preparing for a pandemic and disaster planning, training new office staff has been stressful. All this in addition to trying to cope with W. not responding to his latest treatment, unable to function more than moving from the recliner where he sleeps all day to the bed, where he sleeps more, having to do all the housework, his and mine is exhausting. The only thing that keeps me sane is my knitting.
I have finished a saddle sweater for my 22 yr old son, a knit skirt for me and miscellaneous items. The knitting is complete. It just the finishing….the weaving of seams, the blocking, etc. that needs to be done.
I don’t know why this is so difficult for me….to finish or not to finish. That is the question! This seems like such a easy task but I struggle to get motivated to do it!
I am on a sweater knitting jag right now. Having finished the Elizabeth Zimmerman Yoke sweater and the Elizabeth Zimmerman Saddle sweater, I am now making a Elizabeth Zimmerman Cardigan in the round with steeks. I plan to steek the opening and knit a border when I am done. This is slow-going but the color (red) keeps me knitting on. I love red. I’m tired of knitting with drab greys. I need some color in my dreary life.
Life has been a little lonely lately. W. has not felt good enough with his lymphoma to do much, other than an occasional outing to dinner or fast food. I am feeling the struggle of deciding to either find a part-time job that is less demanding or quit or retire, so I can take care of my husband and manage all the paperwork associated with his cancer treatment.
I’m not sure we can afford my loss of income just yet. Slowly but surely, we are reducing our debts and I will feel better about a change when that happens. It is very hard to think about changing a job I’ve been at for 20 years, two blocks from my home. However, I am feeling that he needs me more at home and my desire for my job is waning. I have been told I am good at what I do, but my focus is just too distracted by his needs. Rather than be a nurse for the 250 children in my care, I will be a nurse for one. It’s not really changing jobs. It’s only relocating. I am only one year away from early retirement but I got a late start of saving for retirement, so the income won’t be much. Yet, I have never been a high maintenance woman. We just need enough to live a modest life and take care of the bills.
So why am I afraid of finishitis? What is it that keeps me hanging on?
I haven’t blogged in awhile. I just haven’t had much time to collect my thoughts. Stress has overwhelmed me the last two months. The job: breaking in and adjusting to a new boss, trying to meet the demands of starting school, preparing for a pandemic and disaster planning, training new office staff has been stressful. All this in addition to trying to cope with W. not responding to his latest treatment, unable to function more than moving from the recliner where he sleeps all day to the bed, where he sleeps more, having to do all the housework, his and mine is exhausting. The only thing that keeps me sane is my knitting.
I have finished a saddle sweater for my 22 yr old son, a knit skirt for me and miscellaneous items. The knitting is complete. It just the finishing….the weaving of seams, the blocking, etc. that needs to be done.
I don’t know why this is so difficult for me….to finish or not to finish. That is the question! This seems like such a easy task but I struggle to get motivated to do it!
I am on a sweater knitting jag right now. Having finished the Elizabeth Zimmerman Yoke sweater and the Elizabeth Zimmerman Saddle sweater, I am now making a Elizabeth Zimmerman Cardigan in the round with steeks. I plan to steek the opening and knit a border when I am done. This is slow-going but the color (red) keeps me knitting on. I love red. I’m tired of knitting with drab greys. I need some color in my dreary life.
Life has been a little lonely lately. W. has not felt good enough with his lymphoma to do much, other than an occasional outing to dinner or fast food. I am feeling the struggle of deciding to either find a part-time job that is less demanding or quit or retire, so I can take care of my husband and manage all the paperwork associated with his cancer treatment.
I’m not sure we can afford my loss of income just yet. Slowly but surely, we are reducing our debts and I will feel better about a change when that happens. It is very hard to think about changing a job I’ve been at for 20 years, two blocks from my home. However, I am feeling that he needs me more at home and my desire for my job is waning. I have been told I am good at what I do, but my focus is just too distracted by his needs. Rather than be a nurse for the 250 children in my care, I will be a nurse for one. It’s not really changing jobs. It’s only relocating. I am only one year away from early retirement but I got a late start of saving for retirement, so the income won’t be much. Yet, I have never been a high maintenance woman. We just need enough to live a modest life and take care of the bills.
So why am I afraid of finishitis? What is it that keeps me hanging on?
UPDATED 11/11/09
My finishitis is cured! I finished the Saddle Sweater and Bell Curve Skirt. See pictures below .
Saturday, January 24, 2009
For Better or Worse: Lymphoma
I have tried to start this several times and I’m still struggling with how to write about what’s happening to our family. There is just no easy way to put it….My husband has been diagnosed with Cutaneous T-cell lymphoma, a blood/skin cancer. What started as red, dry skin turned out to be cancer. Never in a million years did I imagine that this would end up to be cancer.
My years of being a nurse has trained me to be calm and not panic but there are moments that my mind succumbs to the many possibilities. I try not to get ahead of myself, but I’ve always been a person who considers the road ahead. Only this time, it is very fuzzy and this is a bit unsettling. I feel that this is a situation where I have no choice but to let God take over. I have to surrender to His Will. This is something that can be so overwhelming, only He can calm my heart and give me and my husband the strength to get through it. Experience has shown me how God can give me strength of mind and spirit when I need it most, and I have no doubt He will do just that in this situation.
As I slowly inform family and friends of the diagnosis, it is so hard to know how best to respond to their messages of sympathy and support. On one side it is nice to know that so many care, and on the other it seems I end up comforting them rather than they comforting me. Is this the nurse in me? I know they are afraid for me and my husband. There are times, I am afraid for myself.
I still haven’t heard from many and even this I understand because I have fallen into this uncomfortable situation myself. When one hears the bad news of someone having “cancer”, it is just very difficult to know what to say, so you say nothing. You want to say something that will comfort and reassure but there are so many unknowns you don’t want to say the wrong thing. Along the way, you eventually get up enough courage to say something to show you care.
While my husband continues to undergo tests to determine the extent of his disease and the course of treatment needed, I imagine that this will be a long road towards remission. With the advances in health care, better treatments are giving better outcomes and I am hopeful.
Life goes on and even as I grow older, I am learning to appreciate everyday the beauty in this world, the special moments I share with him, and the togetherness we have held these 32+ years. My parents will be celebrating 60 years of marriage this year. They are wonderful examples of love, sacrifice, long-suffering, and commitment The glue of love is strong in our families.
My years of being a nurse has trained me to be calm and not panic but there are moments that my mind succumbs to the many possibilities. I try not to get ahead of myself, but I’ve always been a person who considers the road ahead. Only this time, it is very fuzzy and this is a bit unsettling. I feel that this is a situation where I have no choice but to let God take over. I have to surrender to His Will. This is something that can be so overwhelming, only He can calm my heart and give me and my husband the strength to get through it. Experience has shown me how God can give me strength of mind and spirit when I need it most, and I have no doubt He will do just that in this situation.
As I slowly inform family and friends of the diagnosis, it is so hard to know how best to respond to their messages of sympathy and support. On one side it is nice to know that so many care, and on the other it seems I end up comforting them rather than they comforting me. Is this the nurse in me? I know they are afraid for me and my husband. There are times, I am afraid for myself.
I still haven’t heard from many and even this I understand because I have fallen into this uncomfortable situation myself. When one hears the bad news of someone having “cancer”, it is just very difficult to know what to say, so you say nothing. You want to say something that will comfort and reassure but there are so many unknowns you don’t want to say the wrong thing. Along the way, you eventually get up enough courage to say something to show you care.
While my husband continues to undergo tests to determine the extent of his disease and the course of treatment needed, I imagine that this will be a long road towards remission. With the advances in health care, better treatments are giving better outcomes and I am hopeful.
Life goes on and even as I grow older, I am learning to appreciate everyday the beauty in this world, the special moments I share with him, and the togetherness we have held these 32+ years. My parents will be celebrating 60 years of marriage this year. They are wonderful examples of love, sacrifice, long-suffering, and commitment The glue of love is strong in our families.
Subscribe to:
Posts (Atom)