Update

cindysuetoyou

Once again I don't know where to start. It's 1:30 am and I'm one-finger typing on my iPhone in the dark in my recliner in David's room. So bone-weary and exhausted.

We have been out of the hospital one week as of today. David had developed another abscess in a very sensitive place---between his front and his butt. He also had shingles all around his eye and he was in excruciating pain. We went to ER per OHSU's direction and they aspirated the abscess first and then had to do a procedure where they made a large drainage hole. That has also been excruciating for David. During that stay, lots happened and I was a total mess, crying so hard, meeting with David and pallaitive care drs, talking to David about his death....I don't have the ability to adequately express the mental agony I felt during this last hospital stay. We were discharged on Thursday. My daughter's wedding was that Saturday. So incredibly difficult and sad. David was too sick to go to the wedding.

I am back to dressing and packing David's abscess wound many times each day. David is recovering from the abscess and the shingles pretty well, but his overall status is terrible and it's breaking my heart. He is totally incontinent, totally bedridden. Talking is too hard for him. I have to feed him---it's too hard for him to lift silverware to his face. He has a terrible time swallowing pills and food. We had an MRI done and it showed that his overall mass effect was "significantly improved" and that he had noticeable reduction of tumor load. But he also had a "significant brain hematoma." A brain bleed. It's at least four to five weeks old. Our NO says its very difficult to find the correlation when David started to go downhill and when that bleed occurred. So no more Avastin for David. He's really upset about not being able to take it, especially since we had that favorable MRI.

There's so much more that I just am not up to writing---not major stuff but significant details. I'm just too tired to write it or even think about it.

I don't think I will post here in the "brain tumor" section any more. I am going to move to the Caretakers and the Emotional Support boards. I've felt really selfish and guilty about posting devastating updates on this area because there's too many people battling and coming to this site for encouragement and hope, and I don't want to make it harder for them. I'll still lurk and post here occasionally, but they will be safe, generic posts. So if you want to know how David is doung, please look for me on the Caretakers page. And I'll still comment every once in a while on the brain cancer wall. There are so many of you who have been so supportive and who have prayed and encouraged me...I want to stay in touch with you.

Love and blessings, always.....
Cindy

BenLenBo

Bless Your Heart
Cindy,
I am so, so, sorry to read David is struggling so hard. He is fighting with everything within
him to be here for everyone. What is causing all the abcesses and shingles, is it the Avastin playing havok on the body, or side effects from the chemo/ radiation treatment received at the
beginning of his diagnosis? Benjamin's doctors, say that side effects from radiation can take years to rear its ugly head. Just doen't seem right!
We will pray for you to have the strength daily and for David to continue fighting as he wishes on a daily basis.

Carol

dasspears

So sorry
I'm so sorry for all you are going through right now. It's so difficult and I just can't imagine but bless you for all you are doing for David. You may not feel strong but you are. I think that expressing yourself - such as posting on this board - is cathartic and helpful so please do not think that you are being selfish. Many are here for you. Take care, Cindy.
Debra

falcon69

Thoughts and prayers are with you
My heart goes out to you Cindy. You and David have both endured so very much. I think of you often and say a prayer for you each day. I can only imagine the agony you are going through right now. May God be with both you and your dear son, David.

Blessings,
Julie

I_Promise

falcon69 said:

Thoughts and prayers are with you
My heart goes out to you Cindy. You and David have both endured so very much. I think of you often and say a prayer for you each day. I can only imagine the agony you are going through right now. May God be with both you and your dear son, David.

Blessings,
Julie

I will follow your updates
in the other section. I always check this website to have news of you and David. I think your writing is true and important and I want to bear witness to all of it. I send you my love,

Julia

connsteele

Cindy, I can say that I

Cindy, I can say that I truly feel your pain and it is excruciating. I am so sorry. You and David have are such fighters, but I imagine you wonder how much more you can bear. I know, because I've been there. I would say the emotional pain, at least for the caretaker, is worse than any physical pain I've ever experienced.

Before my son David passed, I subscribed to the Brain tumor care givers email list and it has been so helpful. The caregivers on there have really been through it and don't hold back any of their hurt, anger, frustration, or grief. They understand everything that you are feeling. The email is: btcaregivers@braintrust.org.

I'm sure that the caregivers list on this site is good, but btcaregivers list is for brain tumor caregivers. Because as we all know, brain tumors are in a league of their own and the issues associated with them are unique among cancers.

In fact, I have started an ongoing email friendship from a woman on that list who lost her 22-year old daughter in February. Writing to each other has provided so much comfort. I hope you can also find it helpful.

I know what you mean about not wanting to put everything you are experiencing on this discussion board, because you hate to feel like you might cause others to lose hope.

For all of those on this list who are doing well and beating the odds, I am so glad for you and celebrate with you everytime one of you gets a good MRI. There are success stories out there and this site is a wonderful place to share them.

Also Cindy, feel free to email me: connsteele@msn.com.

Prayers and hugs to you.

Connie
mother of David
dx medulloblastoma, 1985, age 8
26 years remission
dx AA3 April 2011
passed away April 14, 2012

Unknown

Thinking about David and an update on DavidO
Cindy, I have been following your updates and appreciate the love and support you have given to so many of us here. You and David have been and will continue to be in my prayers - I know this has been an exhausting journey for you.
Unfortunately, my Dave's journey changed from an earthly one to a heavenly one on June 18th. He had his 4th surgery on May 15th and they were able to take out about 80% of the mass, but it had grown so explosively that there was nothing further they could do for him. We transferred him to an inpatient hospice unit (because of the paralysis) in early June and he was gone a short time later. I haven't wanted to write until now because I needed some time to get used to the reality of all of these changes in our lives, but we did have some sweet time toward the end which I'm very thankful for.
I understand your reluctance to post the grim realities which come with this disease when people are looking for hope - I share your concerns as I think about my Dave's journey, but I wanted to let you know that your courage and strength have blessed many lives. You have written so compassionately about this incredibly difficult path, and have united many of us who would otherwise have felt so terribly alone. Thank you for being real - I needed to be real, and there aren't many people who can go down this road - only those who have lived with the reality of each day's sorrow and hope can understand the roller coaster fully.
I am thankful that you have the courage to hold up a light in the darkness - it really does make a difference to more people than you know. You and David and the love that you share will be forever in my heart. CindyO

4theloveofmysis

you
My heart goes out to you. Please dont feel bad in any way for posting the truth on here. The truth of this cancer is it just plain sucks!!! We are all here for you. I will follow you to the other page because I would like to be there for you. You were so sweet to me and so many others on this page. You are such a special woman and mother.
Brenda

Raani01

4theloveofmysis said:

you
My heart goes out to you. Please dont feel bad in any way for posting the truth on here. The truth of this cancer is it just plain sucks!!! We are all here for you. I will follow you to the other page because I would like to be there for you. You were so sweet to me and so many others on this page. You are such a special woman and mother.
Brenda

I am with you, CIndy
It is been 3 months since I wrote,I guess. But,I often checked this site. I don't know why I didn't write.. I know some of you on this site will remember me.When I wrote last time, I have been struggling to make a decision on whether to do radiation treatment for my husband, Jacob.Well, we decided not to and it was a good decision as I look back. A lot happened in this time. Jacob is at home hospice since April 3rd and now bedridden , and no repsonse. He opens his eyes on and off and make some noices.He still eats enough which is the only comfort I have.I took 3 months FMLA and sat in our bedroom.It is heatbreaking to watch my husband is decining in front of eyes.When I was home full timewith him, all I wanted to do was to take care of him and didn't feel like writng.My kids are old enough to take care of then and they kind of let me with thier dad:-) My boys got summer break, my FMLA ended and I went back to work. I go to work because I know how important is to have insurance. I have read with pain that Connie lost her David and now my heart is aching for Cindy. In April Jacob had an infection and the dr told us he would only have 2 more weeks.Well, good Lord is keeping my husband with me still and I am living one day a time and letting GOd to handle my tomorrow.Cindy, I will join you in the Caregivers page also.
It is a comfort to know we have each other,
Raani

cindysuetoyou

BenLenBo said:

Bless Your Heart
Cindy,
I am so, so, sorry to read David is struggling so hard. He is fighting with everything within
him to be here for everyone. What is causing all the abcesses and shingles, is it the Avastin playing havok on the body, or side effects from the chemo/ radiation treatment received at the
beginning of his diagnosis? Benjamin's doctors, say that side effects from radiation can take years to rear its ugly head. Just doen't seem right!
We will pray for you to have the strength daily and for David to continue fighting as he wishes on a daily basis.

Carol

Hello
Hello, Carol.

I'm trying to work my way down the replies to this post...I don't know if I can answer them all in one night.

The doctors say that because David had chicken pox when he was a child, the shingles virus is in his system, and because his immune system is compromised, he is more susceptible to shingles outbreaks. Apparently it is not uncommon for chemo patients to develop shingles. It's the same thing with the abscesses. We all have the same type of flora on our skin and in our digestive tracts but for David, when it gets into a break in his skin, he develops an abscess because he is immune-suppressed from the chemo. It is not from the radiation.

We have a new issue that we are fighting. David has neuropathy from the shingles. Even though the shingles outbreak has cleared up, his nerves are still causing him terrible excruciating pain. We have been giving him so much pain medicine that it's frightening. He has an appt. on 8/1 for a nerve blocking shot. I am praying that it will bring him some relief.

I'm so glad that your son Benjamin is doing so well. I love reading that he is fighting so hard and he is overcoming this cancer.

Love and blessings,
Cindy

cindysuetoyou

connsteele said:

Cindy, I can say that I

Cindy, I can say that I truly feel your pain and it is excruciating. I am so sorry. You and David have are such fighters, but I imagine you wonder how much more you can bear. I know, because I've been there. I would say the emotional pain, at least for the caretaker, is worse than any physical pain I've ever experienced.

Before my son David passed, I subscribed to the Brain tumor care givers email list and it has been so helpful. The caregivers on there have really been through it and don't hold back any of their hurt, anger, frustration, or grief. They understand everything that you are feeling. The email is: btcaregivers@braintrust.org.

I'm sure that the caregivers list on this site is good, but btcaregivers list is for brain tumor caregivers. Because as we all know, brain tumors are in a league of their own and the issues associated with them are unique among cancers.

In fact, I have started an ongoing email friendship from a woman on that list who lost her 22-year old daughter in February. Writing to each other has provided so much comfort. I hope you can also find it helpful.

I know what you mean about not wanting to put everything you are experiencing on this discussion board, because you hate to feel like you might cause others to lose hope.

For all of those on this list who are doing well and beating the odds, I am so glad for you and celebrate with you everytime one of you gets a good MRI. There are success stories out there and this site is a wonderful place to share them.

Also Cindy, feel free to email me: connsteele@msn.com.

Prayers and hugs to you.

Connie
mother of David
dx medulloblastoma, 1985, age 8
26 years remission
dx AA3 April 2011
passed away April 14, 2012

thank you
Thank you, Connie, for your note.

I agree--I think that the emotional pain is the worst thing I've ever experienced in my life. I'm an emotional person in my makeup anyway---I've always felt things intensely and I tend to be a passionate person, but what I am going through with David...it's in a league all of its own. We moved David out of his apartment on Thursday, and when we were done, I was waiting outside for my husband to move the U-Haul, and I looked down the street to the Starbucks and stores that David used to love to walk to, and I thought about how he would never ever come back here and how he had loved his life in Portland and his little neighborhood, and I couldn't believe the grief that came over me and how awful I felt. The grief is like a physical thing that seems to swallow me up and it pulls me down and I feel so black inside and full of despair and misery. I hate it. I fight hard against it, but so much of the time I end up crying so hard and so long that I can't breathe or talk.

I think of you often and I tell myself that you have experienced this same situation and the same loss that I am facing, and that you survived it, and so I can survive it too. I am fighting hard to stay strong, and I still trust God, always. It's just such a miserable life right now.

Thank you again for writing to me.
Love and blessings,
Cindy
PS When I feel more like writing, I will check out that brain tumor care givers site that you mentioned. Right now I can barely keep up here on csn...in fact, I'm not doing too good at keeping up here....

cindysuetoyou

I_Promise said:

I will follow your updates
in the other section. I always check this website to have news of you and David. I think your writing is true and important and I want to bear witness to all of it. I send you my love,

Julia

hello
Hi, Debra, Julie, and Julia.

Thank you for writing to me and helping me not to feel alone. I know you all are fighting your own battles like me, and you understand the pain and despair. I know that I'm not the only one going through hard times, but sometimes I just need to vent here and to read your comments and feel your support.

I still plan on posting on the caregivers and emotional support boards but i wanted to say thank you for writing to me.

Love and blessings,
Cindy

cindysuetoyou

unknown said:

Thinking about David and an update on DavidO
Cindy, I have been following your updates and appreciate the love and support you have given to so many of us here. You and David have been and will continue to be in my prayers - I know this has been an exhausting journey for you.
Unfortunately, my Dave's journey changed from an earthly one to a heavenly one on June 18th. He had his 4th surgery on May 15th and they were able to take out about 80% of the mass, but it had grown so explosively that there was nothing further they could do for him. We transferred him to an inpatient hospice unit (because of the paralysis) in early June and he was gone a short time later. I haven't wanted to write until now because I needed some time to get used to the reality of all of these changes in our lives, but we did have some sweet time toward the end which I'm very thankful for.
I understand your reluctance to post the grim realities which come with this disease when people are looking for hope - I share your concerns as I think about my Dave's journey, but I wanted to let you know that your courage and strength have blessed many lives. You have written so compassionately about this incredibly difficult path, and have united many of us who would otherwise have felt so terribly alone. Thank you for being real - I needed to be real, and there aren't many people who can go down this road - only those who have lived with the reality of each day's sorrow and hope can understand the roller coaster fully.
I am thankful that you have the courage to hold up a light in the darkness - it really does make a difference to more people than you know. You and David and the love that you share will be forever in my heart. CindyO

i am so very deeply sorry
Oh, Cindy, I am so very very sorry to read this. I am so deeply saddened to hear that your Dave died. I feel shocked--I thought he was doing good. I have said it before...I must live in denial because I cannot believe it when I read that he had died. This disease is so absolutely heartbreaking.

I feel so humbled that you could write such a gracious letter to me, extending such compassion and encouragement to me in the midst of your loss and suffering...it is really amazing and unselfish. Thank you for taking the time to write to me.

I will continue to pray for strength and peace for you and your family. I'm so sorry for all that you have been through, and for the loss of your dear husband and the father of your children. May God grant you an extra measure of grace for the hard times you are going through.

Love and blessings,
Cindy

cindysuetoyou

4theloveofmysis said:

you
My heart goes out to you. Please dont feel bad in any way for posting the truth on here. The truth of this cancer is it just plain sucks!!! We are all here for you. I will follow you to the other page because I would like to be there for you. You were so sweet to me and so many others on this page. You are such a special woman and mother.
Brenda

Thank you
Thank you, Brenda, for being here for me. I know that you totally understand the pain and grief I am going through. I hate how much we have suffered, and I hate how many there are of us. But I am glad that you and others understand and are there for me.

I will post more about David and our ever-changing situation on the caretakers boards in a few days. I feel so drained these days....I used to be desperate to post here and vent but lately I'm so emotionally weary that it's hard for me to write much.

Love and blessings,
Cindy

cindysuetoyou

Raani01 said:

I am with you, CIndy
It is been 3 months since I wrote,I guess. But,I often checked this site. I don't know why I didn't write.. I know some of you on this site will remember me.When I wrote last time, I have been struggling to make a decision on whether to do radiation treatment for my husband, Jacob.Well, we decided not to and it was a good decision as I look back. A lot happened in this time. Jacob is at home hospice since April 3rd and now bedridden , and no repsonse. He opens his eyes on and off and make some noices.He still eats enough which is the only comfort I have.I took 3 months FMLA and sat in our bedroom.It is heatbreaking to watch my husband is decining in front of eyes.When I was home full timewith him, all I wanted to do was to take care of him and didn't feel like writng.My kids are old enough to take care of then and they kind of let me with thier dad:-) My boys got summer break, my FMLA ended and I went back to work. I go to work because I know how important is to have insurance. I have read with pain that Connie lost her David and now my heart is aching for Cindy. In April Jacob had an infection and the dr told us he would only have 2 more weeks.Well, good Lord is keeping my husband with me still and I am living one day a time and letting GOd to handle my tomorrow.Cindy, I will join you in the Caregivers page also.
It is a comfort to know we have each other,
Raani

I am so sorry
Oh, Raani, I wept when I read your post. I am so sorry that Jacob is so ill. When you say that it is heartbreaking to watch your husband decline in front of your eyes...I know what you mean. I look at David in his hospital bed in my master bedroom and my heart is in agony. I walked in my garden and I thought, "my son is dying in my bedroom while I am walking around in the sunshine," and I cannot believe it.

David is also totally bedridden, totally incontinent, unable to move his legs or his left arm. He can only feed himself about 20% of the time. He can talk but he rarely does because it takes so much effort. He says maybe two or three sentences or words a day on some days---other days he never says a word. Sometimes he seems like a zombie---staring blankly at nothing and seemingly unaware of our presence. Other days he makes eye contact and nods or shakes his head when we ask simple questions.

Is Jacob in pain? I so much hope not. David has a lot of pain but we are working with pain management doctors and I'm praying that they can help him.

Our doctors said about a month ago that they thought David had 4 to 6 months left but it's hard to predict. That's if he dies from the tumors...he could die sooner from a catastrophic event, like a brain bleed, a seizure, a pulmonary embolism, a stroke, etc. I am trying to take it one day at a time but it's hard. We have had some sweet moments but overall, I feel like I am dying too. I know that you must be going through the same feelings and I feel so bad for you too. What a nightmare it is for us to see Jacob and David like this.

I am still trusting God for David, no matter what the outcome may be. I know that as terrible as this time is, that there is a better life ahead for David--and for me--in eternity. It's just that this life right here and now is so miserable and full of pain and sorrow.

I will see you on the caregivers boards.

Love, blessings, peace, and strength to you,
Cindy