Hello everyone, I apologize that I haven't posted in a while but I just have not been feeling too well. Yesterday, I almost did not have my second chemo treatment. My white blood count was borderline to being too low to get treatment. But we pressed forward. So I went to my chair and began another trip down chemo lane. It did not go so well. You all may remember that I mentioned last time that they had to put lidocane in with one of my chemo meds so I could handle the pain, unfortunately the lidocane is burning the blood vessels in my arm and they are now at risk of infection. To make matters a little more complicated as I am writing this blog we are monitoring the streaking and black marks on my arm to see if I am going to be making a trip to the ER sometime in the next few hours. I sure hope not. I have been in the hospital enough!!! Oh well not too much I can do now. On the up side I am surprising the doctors for the fact that I haven't lost my hair yet. Most Hodgkin's patients lose their hair right away. I joked with the doctors and the nurses not to talk about it so loudly because the reason I haven't lost my hair yet is because my hair doesn't know I have cancer. So sshhhhhh... Maybe I will get to keep it.
I find it so interesting that when people see me they often comment on how well I look. While I am glad that I still look so handsome and dashing, I sometimes wonder if people would rather if I looked like death warmed over. I actually work pretty really hard to keep my spirits up and to always present a happy outward expression to others. I shower every day, still iron my clothes, and buff my shoes before I head to school. I am still alive and very thankful for everyday I get to have to share with my friends and family. While it takes me a little longer to get up in the morning, to take a shower, to walk down the hall at school, grade papers, and just carry out my everyday functions, it is still wonderful. But ... ...
It is hard.
But they say that the best things in life usually are.
And now for a random transition. (I have been having a lot of these)
The things in my life that I have been reflecting about:
1. the value of cushioned chairs
2. the ticking sound of a mechanical clock
3. the magic of remote controls
4. driving
5. the mystery of the mailbox deliveries (cards vs. medical statements)
6. the ties that bind (family, friends, integrity, and love)
7. Spring
8. bark dust
9. the hearts of humankindand
... ...
10. birthdays
As I am writing this blog my nurse, the caretaker of the house, the mommy to two adorable girls, the program technician for the Farm Service Agency for the USDA, the daughter of Chuck and Dinah, and my wife is scurrying around keeping me comfortable, the kids happy, the house presentable, and planning a bithday parties for our daughter next week and one for her mother tomorrow. She has to be soo tired but she keeps a smile on her face and just keeps carring on.
amazing!
In closing, I would like to thank all who have continued to send me messages. From former students who have justified that I have done some good as a classroom teacher, to former
Boy Scout scoutmasters and troop members, to the Knights of Columbus for the continued prayers and the beautiful Mass (so sorry I could not attend), to all of the prayer circles that keep me and my stuggels in their thoughts, my teaching partner that has been driving me back and forth everyday from Pendleton to Hermiston to teach (I do not think she knows how tired I really am and how I could not work if it wasn't for her), to the wonderful meals people have brought over to my family (although I have not been in the mood to eat too much my kids devouer all of the great meals), to my wonderful freinds and family, and to the whole community that has come together to help my family overcome this disease. Thank you.
For my wife, I must acknowledge the amazing outpouring of support that her fellow coworkers locally and across the great state of Oregon have given to her so that she can be away from work to help care for me and transport me to and from all of my medical appointments. Thank you.
For those who wish to help in a specific way please email either me at chris.demianew@gmail.com or contact one of the helping leads posted on my last blog. I have rewritten this last paragraph twenty times trying to find the words to ask for help but
I just can not seem to get them to say what I want them to say. The problem is that I am out of sick leave and have few options if I get too sick to work, traveling costs are expensive, and I am really really tired.
Well, enough of that serious stuff. Now I need to ccheck my arm snd call the oncologist back and see if I get the honor of a trip to St. Anthony's Hospital. Thanks again and good night.
Saturday, March 28, 2009
Thursday, March 19, 2009
March 19th
Hello,
Well, a week has almost passed since my first chemo treatment. Overall I am doing okay. The biggest issue that I am having so far is that my mouth is completely raw. On Monday, my oncologist prescribed me a mouth wash which taste a little like banana and has the consistency of pudding. If you can imagine that, try to imagine swishing pudding in your mouth. (quite the visual huh!) It doesn't work too well, but it is better than nothing. The medication helps for about 45 minutes but then it wares off and the pain returns. Not Fun. I am pretty tired most of the time and every night at about 6:30 I get a migraine headache. I think I am getting that from teaching all day and I just get exhausted. My body also hurts in more places than I thought could hurt. I am still really sore from the thoracic surgery from a couple of weeks ago but now every joint in my body is so swollen. I try to move around to help from it getting to bad but my energy just doesn't seem to last. So, I tend to sit around and just throb everywhere.
Another hard thing is that my kids have not been well. RyLee has had chronic croup, and little Katelyn has been battling something for a while now too. They want to be with their daddy so much but with my raw mouth I can not be around them too much for risk of infection. The good news is that our new and wonderful pediatrician gave us antibiotics for the two girls so I am thinking that they will be getting better soon. I am going to get enough energy saved up to take the girls to the park during spring break and spend some time with them. I know I might over do it a little but for them it is sooo worth it.
Emma Lee is an amazing person. I really do not know how she has been keeping up. This week alone she had to take the girls to the doctor in Walla Walla, work out day care because our providers daughter was sent home from school ill (Everybody just seems to be ill), go to work, take care of all of our banking and personal business, take care of three sick people, laundry, baths for the girls, dishes, and on and on and on. I know she is just exhausted but every morning she gets up first and gets the girls ready and makes my morning drink(it helps my mouth), packs the daycare bag, and somehow gets herself put together looking amazing. I love her so much. I will give her some more help as soon as I can. I am thankful that her parents have decided to have the girls over for a "sleep over" for tonight so she can get some rest. It was also really nice that my mom reschedule her morning yesterday so she could help watch the girls when we did not have a daycare option and Em really needed to go into work. Em is working so hard.
A message to all who are following this blog:
I have found out that some people are having trouble posting or are not comfortable about posting . I just wanted to say that if that applies to you feel free to email me at chris.demianew@gmail.com or demianew@gmail.com to contact Emma Lee. Getting a message from you often is the little lift that helps to carry us onto the next challenge.
Another note is about the wonderful contact people who are helping us out. To help Emma Lee and I many people have volunteered to coordinate the ways people can help us out. Below is a list of the people who are being kind of a "lead" helper and if you would like to help they would love to hear from you.
In Pendleton:
Tom and Karen Demianew
45667 Best Rd
Pendleton, OR 97801
In Hermiston:
Ethan McDonald
ethan.mcdonald@hermiston.k12.or.us
&
Jessica Charleton
jessica.charleton@hermiston.k12.or.us
In Vancouver:
Patti Lundy
plundy@egreen.wednet.edu
I really am uncomfortable about asking for help. But I also am the kind of person that when I want to help somebody out I do not like not knowing what I can do to help or feeling like not being able to provide someting that is needed. So, I am trying to make it as open as possible for people to know how they can help and who to talk to. One of the biggest ways people can help is if you want to make a donation to help my family shoulder the costs of my treatments Patti and Ethan both have deposit slips to the account set up at Bank of America. They are the most wonderful people and I appreciate so much what they are doing to help me out. If you would like the account number just email me and I can send that to you or I can mail a slip if you would like. My mailing address is 704 SW 28th street, Pendleton, OR 97801
As you can imagine we are still in the early stages of my treatment and it will most likely get worse before I get better. I wish that I could take more time off to rest but my sick leave has been exhausted and I now take unpaid leave if something else doesn't work out. I am so thankful for the meals that have been provided for my family. It has been a BIG help to have all of the assistance with the meals. Evenings are so hard on Emma Lee and I and having a meal that is easy to get ready is a big plus.
As for all of you, thank you for your continued prayers and messages. It is so nice to open my email or mailbox and see a message from you. I hope you are all well and I look forward to posting again soon.
Chris
Well, a week has almost passed since my first chemo treatment. Overall I am doing okay. The biggest issue that I am having so far is that my mouth is completely raw. On Monday, my oncologist prescribed me a mouth wash which taste a little like banana and has the consistency of pudding. If you can imagine that, try to imagine swishing pudding in your mouth. (quite the visual huh!) It doesn't work too well, but it is better than nothing. The medication helps for about 45 minutes but then it wares off and the pain returns. Not Fun. I am pretty tired most of the time and every night at about 6:30 I get a migraine headache. I think I am getting that from teaching all day and I just get exhausted. My body also hurts in more places than I thought could hurt. I am still really sore from the thoracic surgery from a couple of weeks ago but now every joint in my body is so swollen. I try to move around to help from it getting to bad but my energy just doesn't seem to last. So, I tend to sit around and just throb everywhere.
Another hard thing is that my kids have not been well. RyLee has had chronic croup, and little Katelyn has been battling something for a while now too. They want to be with their daddy so much but with my raw mouth I can not be around them too much for risk of infection. The good news is that our new and wonderful pediatrician gave us antibiotics for the two girls so I am thinking that they will be getting better soon. I am going to get enough energy saved up to take the girls to the park during spring break and spend some time with them. I know I might over do it a little but for them it is sooo worth it.
Emma Lee is an amazing person. I really do not know how she has been keeping up. This week alone she had to take the girls to the doctor in Walla Walla, work out day care because our providers daughter was sent home from school ill (Everybody just seems to be ill), go to work, take care of all of our banking and personal business, take care of three sick people, laundry, baths for the girls, dishes, and on and on and on. I know she is just exhausted but every morning she gets up first and gets the girls ready and makes my morning drink(it helps my mouth), packs the daycare bag, and somehow gets herself put together looking amazing. I love her so much. I will give her some more help as soon as I can. I am thankful that her parents have decided to have the girls over for a "sleep over" for tonight so she can get some rest. It was also really nice that my mom reschedule her morning yesterday so she could help watch the girls when we did not have a daycare option and Em really needed to go into work. Em is working so hard.
A message to all who are following this blog:
I have found out that some people are having trouble posting or are not comfortable about posting . I just wanted to say that if that applies to you feel free to email me at chris.demianew@gmail.com or demianew@gmail.com to contact Emma Lee. Getting a message from you often is the little lift that helps to carry us onto the next challenge.
Another note is about the wonderful contact people who are helping us out. To help Emma Lee and I many people have volunteered to coordinate the ways people can help us out. Below is a list of the people who are being kind of a "lead" helper and if you would like to help they would love to hear from you.
In Pendleton:
Tom and Karen Demianew
45667 Best Rd
Pendleton, OR 97801
In Hermiston:
Ethan McDonald
ethan.mcdonald@hermiston.k12.or.us
&
Jessica Charleton
jessica.charleton@hermiston.k12.or.us
In Vancouver:
Patti Lundy
plundy@egreen.wednet.edu
I really am uncomfortable about asking for help. But I also am the kind of person that when I want to help somebody out I do not like not knowing what I can do to help or feeling like not being able to provide someting that is needed. So, I am trying to make it as open as possible for people to know how they can help and who to talk to. One of the biggest ways people can help is if you want to make a donation to help my family shoulder the costs of my treatments Patti and Ethan both have deposit slips to the account set up at Bank of America. They are the most wonderful people and I appreciate so much what they are doing to help me out. If you would like the account number just email me and I can send that to you or I can mail a slip if you would like. My mailing address is 704 SW 28th street, Pendleton, OR 97801
As you can imagine we are still in the early stages of my treatment and it will most likely get worse before I get better. I wish that I could take more time off to rest but my sick leave has been exhausted and I now take unpaid leave if something else doesn't work out. I am so thankful for the meals that have been provided for my family. It has been a BIG help to have all of the assistance with the meals. Evenings are so hard on Emma Lee and I and having a meal that is easy to get ready is a big plus.
As for all of you, thank you for your continued prayers and messages. It is so nice to open my email or mailbox and see a message from you. I hope you are all well and I look forward to posting again soon.
Chris
Monday, March 16, 2009
Suggestions for head coverings
One of the things I have noticed is how easily I get cold. I also know that there is a possibility that I may lose my hair so I decided to create a thread for suggestions of what kind of hat I should get. I have never been much of a hat wearer but I will need to find something.
So if you have ideas get them posted.
So if you have ideas get them posted.
Sunday, March 15, 2009
... ... continuing with the last post
The last post was pretty short but I have been having some early reactions to the chemo drugs. I have been having pretty rough flu like symptoms (sore joints, stiff neck, and jaw has been sore) and a pretty sore mouth and throat. These are known side effects they just do not usually set in so quickly.
I wanted to give my email address to all of the followers who may not have my email address. It is chris.demianew@gmail.com Also my mailing address is 704 SW 28th Street Pendleton OR 97801. These are some things that people have been asking for.
Once again Emma Lee want to thank you for helping us through this time. Thanks
Chris
I wanted to give my email address to all of the followers who may not have my email address. It is chris.demianew@gmail.com Also my mailing address is 704 SW 28th Street Pendleton OR 97801. These are some things that people have been asking for.
Once again Emma Lee want to thank you for helping us through this time. Thanks
Chris
One down ... ??? to go.
Chemo went ok yesterday. The treatment lasted for a little over six hours but some of that was a pre-treatment check up with the doctor. So when I was told the treatment could take seven hours I guess they were not too far off. I thought that all was going well and I was going to get out of the treatment center early when the first three chemo drugs went smoothly. They were a "push" drug which means that they are added to a saline drip through a syringe by the nurse. The drug that was bad news was the last one! It came in a bag that was twice the size of the saline drip bags. Almost immediatly after they started it I had a severe burning sensation in my arm where the the IV was hooked up. They changed it to a pump machine to try to slow it down and added more saline but that did not help much. Finialy they added lidocaine to the bag kept it on a real slow drip and I was able to manage the burning sensation. All I can say to try to communicate how the whole first treatment went is "wowah".
On to another subject, Patti Lundy has agreed to be the contact person at Heritage for the account number to make deposits at Bank of America to help Emma Lee and I pay for gas, medical bills, and other costs that we are facing as we treat my cancer. We really appreciate any assistance we can get and are very thankful for all of the help we have had so far. So if you would like to make a donation you can either email me and I will send you the account number or you can see Patti and make arrangments with her.
thank you again. I will post again soon. I am not feeling well right now and need to rest
On to another subject, Patti Lundy has agreed to be the contact person at Heritage for the account number to make deposits at Bank of America to help Emma Lee and I pay for gas, medical bills, and other costs that we are facing as we treat my cancer. We really appreciate any assistance we can get and are very thankful for all of the help we have had so far. So if you would like to make a donation you can either email me and I will send you the account number or you can see Patti and make arrangments with her.
thank you again. I will post again soon. I am not feeling well right now and need to rest
Thursday, March 12, 2009
Here we go.
Tomorrow will be the first chemo appointment. I was a bit surprised to find out that the treatment may take 7 hours to administer. I am taking a couple Family Handyman and Wood magazines, a book (Guns, Germs, and Steel by Jared Diamond) and a portable DVD player to keep busy. I hope I can stay mentally distracted. Em will be there right by my side so we may need to take a deck of cards. I hope she lets me win a couple games ;)
I received good news yesterday from my oncologist. My bone marrow test came back negative. That was very reassuring to me. That means at this time there is most likely only the tumors in my chest attached to the pericardium around my heart and to my phrenic nerve. The trick for me over the next several months is to stay as healthy as possible and to get as much rest as possible. This is going to be quite a challenge when I think about the fact that I have two young children who like to share everything with everybody and that I am a teacher at a large public high school but, I'll have to just be as careful as possible.
I also wanted you all to know that I got the account set up at Bank of America. I was told that some branches will allow a deposit if you just ask them to look up my account and say that it was opened at the Pendleton Oregon branch but most won't. They will want an account number. I am nervous about posting the account number on a blog that is open to everybody in the world, so I am going to have a person at Heritage High School have it and you can get it from them or you can email me at chris.demianew@gmail.com. I have not asked anybody yet at HHS to be that person but once I do, I will post the name of that contact person.
As I move into another difficult phase of this disease treatment, I welcome notes and messages to me and my family. This disease is not just about me. It is also about my two little girls who are and will continue to struggle to understand what is wrong with their daddy. It is about my wonderful and beautiful wife who carries a burden and worry about the care for her husband and children. For those of you who know Emma Lee, you recognize that Em is a very very private person. She has never been one who reached out for help and shared with people about her worries and needs. I ask that as you think about me and my issues that you also pray for strength and courage for my wife and children. To be completely open and honest about my greatest concerns is that they are for my family. It consumes me at times about whether their needs are going to be taken care of. While I will be the one who will look like hell on the outside, it is the invisible trauma inflicted on my daughters and wife I worry about going unnoticed.
So, thank you again for your continued support and concern for my health. I cherish all of my freinds and family and am very thankful for all of the good times, memories, and influence you have had on my life. I am who I am because of you all. I look forward to times we may get to share in the future.
Thank you again.
I look forward to posting again soon.
I received good news yesterday from my oncologist. My bone marrow test came back negative. That was very reassuring to me. That means at this time there is most likely only the tumors in my chest attached to the pericardium around my heart and to my phrenic nerve. The trick for me over the next several months is to stay as healthy as possible and to get as much rest as possible. This is going to be quite a challenge when I think about the fact that I have two young children who like to share everything with everybody and that I am a teacher at a large public high school but, I'll have to just be as careful as possible.
I also wanted you all to know that I got the account set up at Bank of America. I was told that some branches will allow a deposit if you just ask them to look up my account and say that it was opened at the Pendleton Oregon branch but most won't. They will want an account number. I am nervous about posting the account number on a blog that is open to everybody in the world, so I am going to have a person at Heritage High School have it and you can get it from them or you can email me at chris.demianew@gmail.com. I have not asked anybody yet at HHS to be that person but once I do, I will post the name of that contact person.
As I move into another difficult phase of this disease treatment, I welcome notes and messages to me and my family. This disease is not just about me. It is also about my two little girls who are and will continue to struggle to understand what is wrong with their daddy. It is about my wonderful and beautiful wife who carries a burden and worry about the care for her husband and children. For those of you who know Emma Lee, you recognize that Em is a very very private person. She has never been one who reached out for help and shared with people about her worries and needs. I ask that as you think about me and my issues that you also pray for strength and courage for my wife and children. To be completely open and honest about my greatest concerns is that they are for my family. It consumes me at times about whether their needs are going to be taken care of. While I will be the one who will look like hell on the outside, it is the invisible trauma inflicted on my daughters and wife I worry about going unnoticed.
So, thank you again for your continued support and concern for my health. I cherish all of my freinds and family and am very thankful for all of the good times, memories, and influence you have had on my life. I am who I am because of you all. I look forward to times we may get to share in the future.
Thank you again.
I look forward to posting again soon.
Monday, March 9, 2009
The Situation.
Hello friends,
Well, this is still a very hard thing for me to write about. But it has been very reassuring to me to have such a great group of friends and family reach out to help my family and I through this very difficult time. To give you all some background to my health I thought I would give you a recap as of today. I have been diagnosed with Hodgkin's Lymphoma stage II. Back on February 17th at Providence Portland Medical Center I had a large tumor (about the size of a softball) partially removed during a VATS procedure (Video Assisted Thoracic Surgery). I was in the cardiac intensive care unit for three days before being moved to a room on the respiratory floor for a short time and then going home. Since the surgery, I have been healing and learning more about my cancer, and having many tests and medical procedures done to prepare for my treatment.
As of today things are looking quite favorable. Last week I had a PET scan, respiratory function test, echo cardiogram, and a bone marrow test (ouch!!!). I do not know the results of the bone marrow test yet, but everything else did not reveal any new problems. I am starting chemo this Friday and I have a lot of anxiety. I am nervous about my own strength, the strength of my family, and the future, but I have an abundance of hope.
Many of my wonderful friends have asked how they can help since they are too far away to bring by a meal or help me get my garbage can to the curb (which is quite a task). To help provide an easy way to help us, my brother is helping me set up an account at Bank of America where people can make deposits to an account. This would be a great help to Emma Lee and I as we drive over 500 miles round trip for my PET scans, bone marrow tests, and chemo appointments, over 140 miles for my radiation appointments, and 120 miles for my other doctors appointments. It will also help because I have very little sick leave left. Moving from Washington to Oregon I was unable to transfer my large sum of sick days from Evergreen to Hermiston and the Hermiston School District does not allow for teachers to donate time*. I am getting amazing help from many freinds in the district but any additional help is certianly welcome.
You can also help by staying in contact. During the initial days of my diagnosis, I found myself in deep worry many times but was quickly reassured by an incomming email, card in the mail, and other gifts of notes, flowers, and well wishes and prayers. This is the biggest challenge I have ever faced. The one lesson I have learned is that I can not be my normal self; independent, self-reliant, and private. I need to reach out and ask for help if I am going to beat this disease. So thank you for you help, prayers, and well wishes. I will continue to post to this blog with updates and hope to continue to hear from you all.
Thank you and look forward to tomorrow.
Chris
Well, this is still a very hard thing for me to write about. But it has been very reassuring to me to have such a great group of friends and family reach out to help my family and I through this very difficult time. To give you all some background to my health I thought I would give you a recap as of today. I have been diagnosed with Hodgkin's Lymphoma stage II. Back on February 17th at Providence Portland Medical Center I had a large tumor (about the size of a softball) partially removed during a VATS procedure (Video Assisted Thoracic Surgery). I was in the cardiac intensive care unit for three days before being moved to a room on the respiratory floor for a short time and then going home. Since the surgery, I have been healing and learning more about my cancer, and having many tests and medical procedures done to prepare for my treatment.
As of today things are looking quite favorable. Last week I had a PET scan, respiratory function test, echo cardiogram, and a bone marrow test (ouch!!!). I do not know the results of the bone marrow test yet, but everything else did not reveal any new problems. I am starting chemo this Friday and I have a lot of anxiety. I am nervous about my own strength, the strength of my family, and the future, but I have an abundance of hope.
Many of my wonderful friends have asked how they can help since they are too far away to bring by a meal or help me get my garbage can to the curb (which is quite a task). To help provide an easy way to help us, my brother is helping me set up an account at Bank of America where people can make deposits to an account. This would be a great help to Emma Lee and I as we drive over 500 miles round trip for my PET scans, bone marrow tests, and chemo appointments, over 140 miles for my radiation appointments, and 120 miles for my other doctors appointments. It will also help because I have very little sick leave left. Moving from Washington to Oregon I was unable to transfer my large sum of sick days from Evergreen to Hermiston and the Hermiston School District does not allow for teachers to donate time*. I am getting amazing help from many freinds in the district but any additional help is certianly welcome.
You can also help by staying in contact. During the initial days of my diagnosis, I found myself in deep worry many times but was quickly reassured by an incomming email, card in the mail, and other gifts of notes, flowers, and well wishes and prayers. This is the biggest challenge I have ever faced. The one lesson I have learned is that I can not be my normal self; independent, self-reliant, and private. I need to reach out and ask for help if I am going to beat this disease. So thank you for you help, prayers, and well wishes. I will continue to post to this blog with updates and hope to continue to hear from you all.
Thank you and look forward to tomorrow.
Chris
I have decided to use this website as a means for keeping in contact with all of you and while giving you a place to get the latest information on my road to health. My road is long from over and I look forward to the wonderful blessings that I get to have every day ahead of me. Look forward to hearing from you all.
Chris
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