Why did it have to be that way. I know God has a plan for all of our lives, but I still wish it didn't have to all happen so fast. Tom and I both knew this time would come, but never expected it to go so fast. The past 9 months changed our lives..... and not like the kind of 9 months that changed our lives in 2008 when we added to our family. This 9 months in 2010 was so different. We never lost hope, faith or love. But in the end, the physical being loss is still shocking. Even though we knew the capabilities of this cancer that we were facing, it still all happened so fast.
The past few days Nathan and I have been watching home videos. Nathan requests, "See Dada, See Dada." Tom had recorded a message for Nathan the day before he had surgery in August. It brought me to tears the first time we watched it together. Since, we've seen it multiple times and every time I still wish he was here. I'm so grateful he did that for not only Nathan, but me too, and the rest of our family. His message not only shows his love, but also his faith. I love you, hunny.
It all happened so fast, I knew life would be just me and Nathan in the end, and as hard as it was to bear the thought of Tom not seeing Nathan off to kindergarden, I still never imagined everything would happen so fast. I know I keep saying that, and I can't help it. Just two months prior was Nathan's 2nd birthday party, and watching the video now, knowing how sick Tom was inside, he was full of life on the outside. After presents were done, he makes everyone laugh as he says, "ok, presents done, time to chug beer!" Those who don't know my husband's sense of humor won't really understand that he didn't really intend to actually "chug beer" but it was just way of getting people to laugh. He loved to do that, he loved getting people to laugh.
Still, it all happened so fast. I would not have wanted to know 9 months ago how life's events would change, but still, right up until the last days, even knowing Tom was home on hospice, a part of me had hope that he would get better. It was a hard day when I realized it wasn't going to happen. That's when I knew everything I was doing to help my husband to be comfortable as he transitioned from this life to his new life, wasn't going to bring him back to me in my earthly life. I yearn for the day I can see him again. Until then, I have to figure out what this life means for Nathan and I, what we will do, and trust in God that He will show us and teach us. It's not going to be easy, so I hold on to hope and faith to get me through.
Sunday, February 27, 2011
Tuesday, February 22, 2011
How are you doing?
This is a difficult question. One that I have been asked quite frequently the past couple days, and I greatly appreciate everyone's sincerity, so this post is my attempt to answer the question.
I am a little lost.
I am tired.
I am missing him.
I love him.
I am relieved that he's not in pain anymore.
I am still in shock.
I wish it didn't have to be this way.
I am grateful for him.
I hurt deep inside.
I'm sad for Nathan.
I cry when no one is around.
Psalm 61:1-3 says, "Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is heigher than I. For you have been my refuge, a strong tower against the foe"
The burden of losing my best friend, my husband, the father of my son, Tom, is far too heavy for me to carry alone. I trust in the Lord, and come to Him to help me learn how to cope, and ask Him to carry this burden from my heavy shoulders. It doesn't happen overnight, in a day, in a week, a month; I have to learn to let go. It's not easy because I yearn to have Tom back, but I have to ask the Lord to teach me patience to live the life He has laid out for me until the day that Tom and I are reunited. Until then, Tom's life and memory of him will never be forgotten. I have a wonderful support system of family and friends that will help Nathan and I through our life here on earth. We all help each other. Who can't take their eyes off of Nathan; he is his father through-and-through, after all.
I am so blessed to have Tom's wonderful buds in my life to help take Nathan under their wings and teach him all of the things Tom would have taught Nathan himself. There is no doubt in my mind that Nathan will not know and understand the person his daddy was. I look forward to watching Nathan grow into the man Tom was. Tom was a devoted and loving husband, father and friend. It's the person he was to each of us that we will never forget.
So, the question, "How are you doing?" I don't have a definitive answer. But I do have faith in the Lord, and Him to lean on to carry this burden of pain of losing my husband. I will teach Nathan the same. It won't be easy, I don't know that it ever will become easy. The strength I have isn't mine alone. It's blessed upon me through my faith in God. Jesus died for our sins so that we may have eternal life. He gives me strength.
I've heard friends say and ask this question, in general, not directed to me.... 'how do we move on?' My friends, I don't have the answer, and I don't know that any human on earth could answer that question. We must ask Him. If you have faith, ask Him. He's listening, always listening. Lean on Him. If you are someone who does not know Jesus Christ as your Savior, just ask Him "Come to me." You must first approach Him and then talk to Him and quietly listen. The answers don't always come out directly, but watch your daily life, live what He has laid our for you, and ask him to carry your burdens, and you will see your life change. I'm not saying daily living is easy, after having experienced this great loss, but it is as simple as asking to help find peace. Tom would say the same. The Lord will carry you if you ask Him.
I will always miss Tom.
I will always love him.
I will always feel a little lonely.
I will always be grateful to him.
I will always have a pain deep inside my heart.
I will always talk to Nathan about his daddy.
I will always celebrate the life Tom lived.
I will always cry when no one is around.
But with all that, I have faith, I have the Lord to help carry the burden weighing down my shoulders, and give me the strength I need everyday.
Still, whenever I am asked "How are you doing?" I might not have an answer because it's too difficult to say for sure. I'm not feeling "good" because I just lost my husband. I'm not "horrible" because I have faith in God. I'm not just "ok" because I have a loving family and wonderful friends. So, maybe, for now, I'm "alright" because I always have Him to carry me.
Love,
Roxanne
I am a little lost.
I am tired.
I am missing him.
I love him.
I am relieved that he's not in pain anymore.
I am still in shock.
I wish it didn't have to be this way.
I am grateful for him.
I hurt deep inside.
I'm sad for Nathan.
I cry when no one is around.
Psalm 61:1-3 says, "Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is heigher than I. For you have been my refuge, a strong tower against the foe"
The burden of losing my best friend, my husband, the father of my son, Tom, is far too heavy for me to carry alone. I trust in the Lord, and come to Him to help me learn how to cope, and ask Him to carry this burden from my heavy shoulders. It doesn't happen overnight, in a day, in a week, a month; I have to learn to let go. It's not easy because I yearn to have Tom back, but I have to ask the Lord to teach me patience to live the life He has laid out for me until the day that Tom and I are reunited. Until then, Tom's life and memory of him will never be forgotten. I have a wonderful support system of family and friends that will help Nathan and I through our life here on earth. We all help each other. Who can't take their eyes off of Nathan; he is his father through-and-through, after all.
I am so blessed to have Tom's wonderful buds in my life to help take Nathan under their wings and teach him all of the things Tom would have taught Nathan himself. There is no doubt in my mind that Nathan will not know and understand the person his daddy was. I look forward to watching Nathan grow into the man Tom was. Tom was a devoted and loving husband, father and friend. It's the person he was to each of us that we will never forget.
So, the question, "How are you doing?" I don't have a definitive answer. But I do have faith in the Lord, and Him to lean on to carry this burden of pain of losing my husband. I will teach Nathan the same. It won't be easy, I don't know that it ever will become easy. The strength I have isn't mine alone. It's blessed upon me through my faith in God. Jesus died for our sins so that we may have eternal life. He gives me strength.
I've heard friends say and ask this question, in general, not directed to me.... 'how do we move on?' My friends, I don't have the answer, and I don't know that any human on earth could answer that question. We must ask Him. If you have faith, ask Him. He's listening, always listening. Lean on Him. If you are someone who does not know Jesus Christ as your Savior, just ask Him "Come to me." You must first approach Him and then talk to Him and quietly listen. The answers don't always come out directly, but watch your daily life, live what He has laid our for you, and ask him to carry your burdens, and you will see your life change. I'm not saying daily living is easy, after having experienced this great loss, but it is as simple as asking to help find peace. Tom would say the same. The Lord will carry you if you ask Him.
I will always miss Tom.
I will always love him.
I will always feel a little lonely.
I will always be grateful to him.
I will always have a pain deep inside my heart.
I will always talk to Nathan about his daddy.
I will always celebrate the life Tom lived.
I will always cry when no one is around.
But with all that, I have faith, I have the Lord to help carry the burden weighing down my shoulders, and give me the strength I need everyday.
Still, whenever I am asked "How are you doing?" I might not have an answer because it's too difficult to say for sure. I'm not feeling "good" because I just lost my husband. I'm not "horrible" because I have faith in God. I'm not just "ok" because I have a loving family and wonderful friends. So, maybe, for now, I'm "alright" because I always have Him to carry me.
Love,
Roxanne
Wednesday, February 16, 2011
Services details
After a 5 year battle with Metastatic Melanoma skin cancer, Tom took his last breath here on Earth and is now at peace with God, pain and cancer-free. I will always love you, Tom my hunny, and look forward to the coming years watching Nathan grow into the man his father was. Thank you, everyone, for your love and support.
Funeral arrangements:
Saturday, February 19th, 2011
Whiting Community Baptist Church, 1020 Tullar Road, Neenah
9:30am Visitation
11am Service
*In lieu of flowers, a trust fund will be set up in Nathan's name
A luncheon will follow at Bridgewood Conference Center, 1000 Cameron Way, Neenah (next to Ground Round) from 12noon - 2pm.
*all food and beverages will be provided, no carry-ins allowed.
Thank you, everyone, for all of your continuous love, support and prayers. Please feel free to continue to share your memories and pictures of Tom on the Facebook Group page Friends of Tom Schwandt.
Love, Roxanne
My Love
I love you, Tom my hunny. You are the love of my life, and always will be. You taught me a lot, made me laugh so much more than I ever imagined, and gave me the most miracle of gifts that anyone could ever give; our son.
Like you always say, keep it simple, so I will do my best to just keep this simple. Only you and God know everything else going through my mind.
Tuesday, Feb 8th - Sunday, Feb 13th
Tom was released from AMC to come home, on hospice care (as previously stated in the below post)
Tuesday night I was on my own with Nathan and Tom. All Tom wanted to do all the time was take a shower because the hot water felt so comforting and relaxing on his sore aching body. I wished I could have given him every shower he asked for, but the pain patch on his neck could not get wet for 12 hours. It was difficult to explain to Tom why he couldn't have a shower, and why he needed to wait. Tom was still experiencing considerable confusion as a result of the seizure and growing cancer, as well as weakness in his body. I was up with Tom about 3 or 4 times that night.
Hospice came for the first visit/consultation on Wednesday morning. Tom was displaying a great deal of anxiety. His care team and Dr decided upon proper dosage of meeds to help his pain relief and anxiety. My sister Suzie was able to come help me, she arrived late Wed evening. Had she not gotten here when she did, I don't know what I would have done in the morning. Sorry, but this event that happened is private. No one got hurt.
It's getting difficult for me to remember each day individually, but each day that passed, Tom showed significant progression in the dying process. Again, had my sister not been here to help me at night, I couldn't have gotten through the night's events. Greg, Tom's best friend, also came over overtime I called him when we needed his support and help, no matter what time it was.
Thursday night it was very difficult for Tom to stand up on his own legs, and it was hard for me to help him get into bed. We had called in for help to get him in a more comfortable position, then the following day, a hospital bed was ordered and arrived. It would be much more comfortable and easier for Tom, and it was.
I am sparing a lot of detail because much of what went on is very private and nothing that I feel is necessary to share. The natural dying process is very difficult to watch the love of your life experience.
It came to the point that Tom was unable to swallow his medications, even crushed and syringed. The hospice nurses and social workers were here at the house daily, sometimes twice or more a day to help coach us through the process and to monitor Tom's progression.
Every day seemed to have such change, and everything happened so fast. By Sunday, Tom became increasingly unaware and unresponsive. We knew he could still here us as his spirit is very much alive, just his body was what was dying.
Monday, February 14th
When the hospice nurse arrived early Monday morning, she gave Tom a thorough exam and explained a lot of signs she was seeing. She explained to us that this is the time we needed to ensure family and close friends that wanted to come say anything to Tom. The day was filled with just that. I wanted to be sure and give everyone their own alone time with Tom to tell him what they wanted without worrying about what others would think of what they said. It is a private time, a private moment to have with your beloved husband, father, brother, son, and friend.
The evening progressed more and more, another nurse came, finally a pain pump was hooked up into Tom's port, and I was giving him other meds in the form of a topical cream rubbed onto his wrist. This all due to the fact that Tom no longer had a swallowing reflux.
As the evening went on, and signs became more pronounced, my sisters and I had a private moment with Tom praying over him. I called Greg to come, and in the short time that I had, Tom took his final breath. It was easy and calming, relaxing and gentle for him.
After my private time with Tom following his passing, we phoned family and the nurse. Official time of death is announced by the hospice nurse when she arrives, which wasn't until 12:45am February 15th.
Sparing the rest of the details...private for family present. Nathan and I, together, gave daddy a last kiss.
I'm only able to write this post through because I have the support of my family, and my sisters are here in the room with me, as well as Nathan at my side. If it weren't for Nathan's smiling little sweet face, I don't know what I would do. And when my sister's leave my house, I know everything will change, but I do have a lot, a ton, of supportive friends and family, so while I know Nathan and I will never be alone, it still won't be easy.
Thank you for all of your love, support, help and prayers. Funeral arrangement details will be in the next post. You can also find information on the Friends of Tom Schwandt group page on Facebook.
Love,
Tom, Roxanne & Nathan
Like you always say, keep it simple, so I will do my best to just keep this simple. Only you and God know everything else going through my mind.
Tuesday, Feb 8th - Sunday, Feb 13th
Tom was released from AMC to come home, on hospice care (as previously stated in the below post)
Tuesday night I was on my own with Nathan and Tom. All Tom wanted to do all the time was take a shower because the hot water felt so comforting and relaxing on his sore aching body. I wished I could have given him every shower he asked for, but the pain patch on his neck could not get wet for 12 hours. It was difficult to explain to Tom why he couldn't have a shower, and why he needed to wait. Tom was still experiencing considerable confusion as a result of the seizure and growing cancer, as well as weakness in his body. I was up with Tom about 3 or 4 times that night.
Hospice came for the first visit/consultation on Wednesday morning. Tom was displaying a great deal of anxiety. His care team and Dr decided upon proper dosage of meeds to help his pain relief and anxiety. My sister Suzie was able to come help me, she arrived late Wed evening. Had she not gotten here when she did, I don't know what I would have done in the morning. Sorry, but this event that happened is private. No one got hurt.
It's getting difficult for me to remember each day individually, but each day that passed, Tom showed significant progression in the dying process. Again, had my sister not been here to help me at night, I couldn't have gotten through the night's events. Greg, Tom's best friend, also came over overtime I called him when we needed his support and help, no matter what time it was.
Thursday night it was very difficult for Tom to stand up on his own legs, and it was hard for me to help him get into bed. We had called in for help to get him in a more comfortable position, then the following day, a hospital bed was ordered and arrived. It would be much more comfortable and easier for Tom, and it was.
I am sparing a lot of detail because much of what went on is very private and nothing that I feel is necessary to share. The natural dying process is very difficult to watch the love of your life experience.
It came to the point that Tom was unable to swallow his medications, even crushed and syringed. The hospice nurses and social workers were here at the house daily, sometimes twice or more a day to help coach us through the process and to monitor Tom's progression.
Every day seemed to have such change, and everything happened so fast. By Sunday, Tom became increasingly unaware and unresponsive. We knew he could still here us as his spirit is very much alive, just his body was what was dying.
Monday, February 14th
When the hospice nurse arrived early Monday morning, she gave Tom a thorough exam and explained a lot of signs she was seeing. She explained to us that this is the time we needed to ensure family and close friends that wanted to come say anything to Tom. The day was filled with just that. I wanted to be sure and give everyone their own alone time with Tom to tell him what they wanted without worrying about what others would think of what they said. It is a private time, a private moment to have with your beloved husband, father, brother, son, and friend.
The evening progressed more and more, another nurse came, finally a pain pump was hooked up into Tom's port, and I was giving him other meds in the form of a topical cream rubbed onto his wrist. This all due to the fact that Tom no longer had a swallowing reflux.
As the evening went on, and signs became more pronounced, my sisters and I had a private moment with Tom praying over him. I called Greg to come, and in the short time that I had, Tom took his final breath. It was easy and calming, relaxing and gentle for him.
After my private time with Tom following his passing, we phoned family and the nurse. Official time of death is announced by the hospice nurse when she arrives, which wasn't until 12:45am February 15th.
Sparing the rest of the details...private for family present. Nathan and I, together, gave daddy a last kiss.
I'm only able to write this post through because I have the support of my family, and my sisters are here in the room with me, as well as Nathan at my side. If it weren't for Nathan's smiling little sweet face, I don't know what I would do. And when my sister's leave my house, I know everything will change, but I do have a lot, a ton, of supportive friends and family, so while I know Nathan and I will never be alone, it still won't be easy.
Thank you for all of your love, support, help and prayers. Funeral arrangement details will be in the next post. You can also find information on the Friends of Tom Schwandt group page on Facebook.
Love,
Tom, Roxanne & Nathan
Tuesday, February 8, 2011
The Road Ahead
Before I move on to the title of this post, I just need to catch up a little from yesterday.
After leaving Tom Sunday evening, with him walking me down to the elevators feeling pretty good, I was fairly confident he would be able to come home on Monday. I spoke with his nurse before I went to bed and he was doing good. I didn't get a chance to call in the morning before I rushed out the door, leaving Nathan behind with Auntie Sasha (making a nice mess of toys for her!).
When I arrived by Tom, I asked his nurse how the night went and it went horrible. He was up every 2 hours needing pain meds, anti-anxiety and required a babysitter (a clinical technician) to sit in the room 24 hours because he kept trying to get up, setting off the bed alarm. He needed help (and still does to a degree) getting from bed to bathroom. I was heartbroken to hear this turn of events which made everything sound like he wasn't going to get to go home (monday), and he didn't.
The Road Ahead
It is going to be rough and only get harder. I need to remind you a little about the progression of Tom's cancer over the past 8 months.
May '10 - found lump, learned cancer had returned
June '10 - spent going back and forth to Madison for tests, and consult with Melanoma specialist.
August '10 - had final major surgery in groin (original site where the Melanoma keeps returning)
Sept '10 - post surgery follow-up CT scan showed growth due to microscopic cells having been left behind from surgery. (yes, it happens, there are no set of eyes and no medical equipment that can detect microscopic cells)
Oct '10 - recovery from surgery, followed by beginning of 6 weeks intense radiation
Nov '10 - completed radiation, CT scan follow-up showed significant growth in the groin as well as lymph nodes up to underneath his lungs causing uncontrollable hiccups.
Dec '10 - recovery form radiation
Jan '10 - one cycle of Temodar chemo pill, our vacation, confusion began
Feb '10 - went in for pain (especially in the neck), confusion, and necessary blood work before second cycle of Temodar chemo pill. CT scan and MRI showed major progression throughout Tom's body, full of melanoma, as well as a leision on his C2 vertebrae. Spent 6 1/2 days in the hospital.
Tom's Oncologist has explained to me and the family how every step we took to fight this, the melanoma came back as if it was saying 'na na, I'm still here...' and had spread/grown each time. With Tom's state of confusion and it having become worse after the seizure he experienced on Thursday morning, we had to really think about, and ask Tom, what to do next. There is another chemo option, but the chance of it even touching this amount of melanoma that now fills his body is maybe a 1 in 10 chance. So, say he goes through this chemotherapy. He will get even weaker, be extremely sick, have very little quality of daily living. Knowing what Tom went through in 2005, I know for a fact that he never wanted to go through that again, and if he had to, to give him 5 more years with Nathan and me, he said he would do it. The Dr explained to Tom his options and Tom said, No, that he just wanted to be with this family. At this point, Tom's whole body is weakening. For example, Wed morning last week, Tom went in the fridge to grab the new full gallon of milk to pour himself a glass of milk at breakfast, and the gallon was very difficult for him to manage (I stepped in and helped him). Then, on the way to the 10:30am appt, on the highway just before our exit, I could see him fiddling around and his hand went to the door handle and I quickly locked the doors and freaked a little 'ah, that's the door!'. He then rolled the window down a little and sat there. I asked him if he was too hot, I could turn the heat down, and he said No, he wasn't. So I asked why he rolled the window down, and he replied, frustrated, that he didn't know, so I rolled it back up. We got off our exit (still having about 4 miles to go) and he said something to the effect that the car ride seemed to take forever. Those are just a few minor examples of the difficulties Tom has been facing, prior to the seizure.
What's next
Tom was able to understand and sign important paperwork that allows me, whom he named, to make decisions on his behalf if he should be unable to do so. That night, the family and I met together to discuss how we felt about Tom's next steps, keeping in mind Tom's wishes and what he has expressed to all of us over the past 6 years. We all were in consensus that we do not want Tom to have to endure anything painful and torturous that would not give him a better quality of life after going through such treatments. This has been extremely difficult for all of us, including Tom, to accept. This is not something you think you will ever have to even consider, especially at our age. So, to make this clear, and I am having a difficult time even typing this.... Yes, Tom is now on hospice care.
Tom's Oncologist and Palliative Care Doctor both came in to visit Tom this morning. His Palliative Care doctor was his first Oncologist in 2005, so he had seen Tom through chemo at that time, then in 2006, he named his replacement who has been Tom's Oncologist since, through today. Both Doctors commended Tom on his strength and courage having gone through as much chemo, surgeries and radiation as he has in his lifetime. They both agreed that Tom has gone above and beyond fighting such a tough battle, and told Tom not to ever wonder if there was something else he could have done.
I hope you all are following me on this. Please know and believe that as hard as this is, it is even more difficult to write about it. Tomorrow, the hospice nurse and social worker will be here to help us get everything we need to ensure Tom's safety and comfort. Tom clearly understands what this means, being on hospice care, and this is what HE wants, and his family and I stand behind him in support and love.
So, how is Tom doing right now?
I know this is a top question on all of your minds. Tom is very glad to be home! Back up to this morning... Tom took a relaxing hot shower (his favorite thing to do because the heat feels so good on his sore body), and settled into bed. We spoke with the Drs again (which is explained above), and confirmed he would be going home today. The care management team worked on getting us an appt and confirming insurance with the hospice agency. It took quite a while this morning waiting for that and discharge paperwork, and Tom was very antsy. He kept asking to take a shower. He has a pain patch on his neck that lasts for 12 hours and cannot get wet, so we had to keep reminding him of that, being the reason he needed to wait till before bed to shower. A few minutes after I arrived at the hospital, I realized Tom was talking to me, to hold a conversation, and was not making any sense at all. He struggled to get the words out that he wanted to speak, and what he put together didn't make sense whatsoever. I asked him if he was confused and he said No. I alerted the nurse because he wasn't doing that the day before, although he did sleep most of Monday after a busy weekend of visitors. That, and it wasn't the same kind of confusion as he had previously (car ride on Wed, as well as confusion during our FL vacation). She said he had been doing that last night and this morning before I arrived.
It's hard to explain. Tom knows who he is, he knew he was in the hospital, he knows who other people are, recalls times past, but when he wants to express something (a feeling, an idea, a desire, dices something around him or on tv), he has a difficult time finding the words he wants to say, and what he does say doesn't form a complete thought nor do the words he says make any sense when used together. Tom does not think he's confused, he feels he makes sense. He has been using the word 'intense' to describe anything.
I need you to understand this. This confused/odd talk is normal, unfortunately, and it will probably only get worse. It is caused from that melanoma lesion on his C2 vertebrae high up in his neck, affecting his brain. It's only a matter of time before the melanoma attacks his brain and causes more damage. Hospice care will help me to learn how to manage it to best help Tom get through his thoughts.
I don't know how to conclude this post. I know a lot of you probably have questions, and I'm sure a lot of you would like to come visit Tom. We don't want to overload Tom with too many visitors per day, because it is very wearing on him. We also have our household to run, and family and friends will be helping me get things done as well as hang out with Tom when I need to be away from home. Tom does need 24 hr care, and for at night I have a baby monitor set up in his room so that I can hear him and wake up if he wakes. (yes, if you hadn't known, Tom sleeps in our big bed by himself, a result of many difficult nights for him finding a comfortable spot to sleep and my snoring problem, haha, at least Nathan doesn't mind --we co-sleep).
Thank you, everyone, for offering your help and sending me your phone numbers to call. I greatly appreciate all of the help and support. I will not hesitate to phone you if I need. Thank you, from the bottom of my heart. Keep the prayers coming, as we need them now, just as much as ever. Thanks for adding us to your various prayer chains as well. Please pray for comfort and peace of mind.
Love,
Roxanne
After leaving Tom Sunday evening, with him walking me down to the elevators feeling pretty good, I was fairly confident he would be able to come home on Monday. I spoke with his nurse before I went to bed and he was doing good. I didn't get a chance to call in the morning before I rushed out the door, leaving Nathan behind with Auntie Sasha (making a nice mess of toys for her!).
When I arrived by Tom, I asked his nurse how the night went and it went horrible. He was up every 2 hours needing pain meds, anti-anxiety and required a babysitter (a clinical technician) to sit in the room 24 hours because he kept trying to get up, setting off the bed alarm. He needed help (and still does to a degree) getting from bed to bathroom. I was heartbroken to hear this turn of events which made everything sound like he wasn't going to get to go home (monday), and he didn't.
The Road Ahead
It is going to be rough and only get harder. I need to remind you a little about the progression of Tom's cancer over the past 8 months.
May '10 - found lump, learned cancer had returned
June '10 - spent going back and forth to Madison for tests, and consult with Melanoma specialist.
August '10 - had final major surgery in groin (original site where the Melanoma keeps returning)
Sept '10 - post surgery follow-up CT scan showed growth due to microscopic cells having been left behind from surgery. (yes, it happens, there are no set of eyes and no medical equipment that can detect microscopic cells)
Oct '10 - recovery from surgery, followed by beginning of 6 weeks intense radiation
Nov '10 - completed radiation, CT scan follow-up showed significant growth in the groin as well as lymph nodes up to underneath his lungs causing uncontrollable hiccups.
Dec '10 - recovery form radiation
Jan '10 - one cycle of Temodar chemo pill, our vacation, confusion began
Feb '10 - went in for pain (especially in the neck), confusion, and necessary blood work before second cycle of Temodar chemo pill. CT scan and MRI showed major progression throughout Tom's body, full of melanoma, as well as a leision on his C2 vertebrae. Spent 6 1/2 days in the hospital.
Tom's Oncologist has explained to me and the family how every step we took to fight this, the melanoma came back as if it was saying 'na na, I'm still here...' and had spread/grown each time. With Tom's state of confusion and it having become worse after the seizure he experienced on Thursday morning, we had to really think about, and ask Tom, what to do next. There is another chemo option, but the chance of it even touching this amount of melanoma that now fills his body is maybe a 1 in 10 chance. So, say he goes through this chemotherapy. He will get even weaker, be extremely sick, have very little quality of daily living. Knowing what Tom went through in 2005, I know for a fact that he never wanted to go through that again, and if he had to, to give him 5 more years with Nathan and me, he said he would do it. The Dr explained to Tom his options and Tom said, No, that he just wanted to be with this family. At this point, Tom's whole body is weakening. For example, Wed morning last week, Tom went in the fridge to grab the new full gallon of milk to pour himself a glass of milk at breakfast, and the gallon was very difficult for him to manage (I stepped in and helped him). Then, on the way to the 10:30am appt, on the highway just before our exit, I could see him fiddling around and his hand went to the door handle and I quickly locked the doors and freaked a little 'ah, that's the door!'. He then rolled the window down a little and sat there. I asked him if he was too hot, I could turn the heat down, and he said No, he wasn't. So I asked why he rolled the window down, and he replied, frustrated, that he didn't know, so I rolled it back up. We got off our exit (still having about 4 miles to go) and he said something to the effect that the car ride seemed to take forever. Those are just a few minor examples of the difficulties Tom has been facing, prior to the seizure.
What's next
Tom was able to understand and sign important paperwork that allows me, whom he named, to make decisions on his behalf if he should be unable to do so. That night, the family and I met together to discuss how we felt about Tom's next steps, keeping in mind Tom's wishes and what he has expressed to all of us over the past 6 years. We all were in consensus that we do not want Tom to have to endure anything painful and torturous that would not give him a better quality of life after going through such treatments. This has been extremely difficult for all of us, including Tom, to accept. This is not something you think you will ever have to even consider, especially at our age. So, to make this clear, and I am having a difficult time even typing this.... Yes, Tom is now on hospice care.
Tom's Oncologist and Palliative Care Doctor both came in to visit Tom this morning. His Palliative Care doctor was his first Oncologist in 2005, so he had seen Tom through chemo at that time, then in 2006, he named his replacement who has been Tom's Oncologist since, through today. Both Doctors commended Tom on his strength and courage having gone through as much chemo, surgeries and radiation as he has in his lifetime. They both agreed that Tom has gone above and beyond fighting such a tough battle, and told Tom not to ever wonder if there was something else he could have done.
I hope you all are following me on this. Please know and believe that as hard as this is, it is even more difficult to write about it. Tomorrow, the hospice nurse and social worker will be here to help us get everything we need to ensure Tom's safety and comfort. Tom clearly understands what this means, being on hospice care, and this is what HE wants, and his family and I stand behind him in support and love.
So, how is Tom doing right now?
I know this is a top question on all of your minds. Tom is very glad to be home! Back up to this morning... Tom took a relaxing hot shower (his favorite thing to do because the heat feels so good on his sore body), and settled into bed. We spoke with the Drs again (which is explained above), and confirmed he would be going home today. The care management team worked on getting us an appt and confirming insurance with the hospice agency. It took quite a while this morning waiting for that and discharge paperwork, and Tom was very antsy. He kept asking to take a shower. He has a pain patch on his neck that lasts for 12 hours and cannot get wet, so we had to keep reminding him of that, being the reason he needed to wait till before bed to shower. A few minutes after I arrived at the hospital, I realized Tom was talking to me, to hold a conversation, and was not making any sense at all. He struggled to get the words out that he wanted to speak, and what he put together didn't make sense whatsoever. I asked him if he was confused and he said No. I alerted the nurse because he wasn't doing that the day before, although he did sleep most of Monday after a busy weekend of visitors. That, and it wasn't the same kind of confusion as he had previously (car ride on Wed, as well as confusion during our FL vacation). She said he had been doing that last night and this morning before I arrived.
It's hard to explain. Tom knows who he is, he knew he was in the hospital, he knows who other people are, recalls times past, but when he wants to express something (a feeling, an idea, a desire, dices something around him or on tv), he has a difficult time finding the words he wants to say, and what he does say doesn't form a complete thought nor do the words he says make any sense when used together. Tom does not think he's confused, he feels he makes sense. He has been using the word 'intense' to describe anything.
I need you to understand this. This confused/odd talk is normal, unfortunately, and it will probably only get worse. It is caused from that melanoma lesion on his C2 vertebrae high up in his neck, affecting his brain. It's only a matter of time before the melanoma attacks his brain and causes more damage. Hospice care will help me to learn how to manage it to best help Tom get through his thoughts.
I don't know how to conclude this post. I know a lot of you probably have questions, and I'm sure a lot of you would like to come visit Tom. We don't want to overload Tom with too many visitors per day, because it is very wearing on him. We also have our household to run, and family and friends will be helping me get things done as well as hang out with Tom when I need to be away from home. Tom does need 24 hr care, and for at night I have a baby monitor set up in his room so that I can hear him and wake up if he wakes. (yes, if you hadn't known, Tom sleeps in our big bed by himself, a result of many difficult nights for him finding a comfortable spot to sleep and my snoring problem, haha, at least Nathan doesn't mind --we co-sleep).
Thank you, everyone, for offering your help and sending me your phone numbers to call. I greatly appreciate all of the help and support. I will not hesitate to phone you if I need. Thank you, from the bottom of my heart. Keep the prayers coming, as we need them now, just as much as ever. Thanks for adding us to your various prayer chains as well. Please pray for comfort and peace of mind.
Love,
Roxanne
Sunday, February 6, 2011
Super Bowl Sunday
Tom has known Sunday was the big game, so I had our day all planned out. The morning didn't go quite as I had hoped, but that's ok. I brought Nathan to the hospital in the morning, and my sister Sasha came with. Nate had on his Packer shirt and I brought Tom's Packer blanket. I wanted to get a Daddy-Son pic of them together, but Nathan didn't want to cooperate. Well, guess that's what ya get with a toddler. The boys were happy to see each other though!
I could tell Tom was definitely feeling much better. With his pain manageable and seemingly under control, and friends visiting, he had a busy morning. Got some appetite, and although everything didn't go down as well as he'd hoped, at least he's feeling hungary and trying to eat! Gotta keep this up before he can leave.
Tonight when I came back to watch the game with Tom, he was very antsy. I know he's tired of being laid up in bed, and he's been asking yesterday and today when he can leave to go home. He has a bed alarm on his bed so that if he tries to get up, an alarm goes off to alert the nurse. Well, apparently he's pretty quick because another nurse tech has now been assigned to hang out with Tom. (LOL) He's still been picking at his IV cord and fidgeting, I think, out of boredom at this point. He does have some memory loss of Wed/Thrs/Fri/Sat due to the seizure he experienced on Thursday morning. I gave him the timeline when we arrived, why he was admitted, what happened on Thrs, the visitors he's had, and that we will find out tomorrow if he can come home.
Tom had a shower this morning, and again about 5pm. He squirmed around in bed for quite a while as we watched the Super Bowl, and finally he asked to take another shower. This is a good sign to know he is back to himself because he was taking showers frequently throughout the day at home simply out of boredom and also to warm up if he was feeling cold. I suggested we go for a walk, so at half-time of the Super Bowl, I had to leave to go pick up Nathan and get him home to bed, so Tom walked me to the elevator (with 2 nurses required to accompany him for safety), and he continued to walk around the corner to take a lap around the 7th floor.
Oh, this is kind of funny, and really tells how much Tom just wants to get out of the hospital now. Two times during his stay since Wed, he's pulled out his IV (needle right out of his port). And this evening when the nurse and I weren't looking, he pulled off his name wrist band! they got a new one for him right away,
Thank you for all of your prayers! I know there have been so many being lifted up and it has really made a difference already! God is holding Tom in his hands for sure.
Love,
Roxanne
I could tell Tom was definitely feeling much better. With his pain manageable and seemingly under control, and friends visiting, he had a busy morning. Got some appetite, and although everything didn't go down as well as he'd hoped, at least he's feeling hungary and trying to eat! Gotta keep this up before he can leave.
Tonight when I came back to watch the game with Tom, he was very antsy. I know he's tired of being laid up in bed, and he's been asking yesterday and today when he can leave to go home. He has a bed alarm on his bed so that if he tries to get up, an alarm goes off to alert the nurse. Well, apparently he's pretty quick because another nurse tech has now been assigned to hang out with Tom. (LOL) He's still been picking at his IV cord and fidgeting, I think, out of boredom at this point. He does have some memory loss of Wed/Thrs/Fri/Sat due to the seizure he experienced on Thursday morning. I gave him the timeline when we arrived, why he was admitted, what happened on Thrs, the visitors he's had, and that we will find out tomorrow if he can come home.
Tom had a shower this morning, and again about 5pm. He squirmed around in bed for quite a while as we watched the Super Bowl, and finally he asked to take another shower. This is a good sign to know he is back to himself because he was taking showers frequently throughout the day at home simply out of boredom and also to warm up if he was feeling cold. I suggested we go for a walk, so at half-time of the Super Bowl, I had to leave to go pick up Nathan and get him home to bed, so Tom walked me to the elevator (with 2 nurses required to accompany him for safety), and he continued to walk around the corner to take a lap around the 7th floor.
Oh, this is kind of funny, and really tells how much Tom just wants to get out of the hospital now. Two times during his stay since Wed, he's pulled out his IV (needle right out of his port). And this evening when the nurse and I weren't looking, he pulled off his name wrist band! they got a new one for him right away,
Thank you for all of your prayers! I know there have been so many being lifted up and it has really made a difference already! God is holding Tom in his hands for sure.
Love,
Roxanne
Saturday, February 5, 2011
Good day but I'm exhausted
It's been a long day for me, and I'm really exhausted so I'm going to just copy/paste some updates I had put on the Facebook Group page today. Thanks for understanding.
Tom is alert this morning. Sort of annoyed to be here by his attitude sometimes, but it's mostly due to the pain meds. He's had some very lucid moments, but also vivid hallucinations. Thus far, we believe it is due to coming down off of one pain med he's been on, but his pain seems to be leveling off, so we don't want to give him anything. Gotta keep his brain thinking. He knows the Super Bowl is tomorrow and the teams playing. I'm looking fwd to family and friends visiting this aft. Early appologies to you guys if Tom seems 'short' with any of ya.
Tom has been awake and alert all day so far. I can tell he's pretty tired tho. He had family and some friends come visit this afternoon. Had us all in laughter. Tom knows what's going on for the most part, but still confused and saying weird things, but seems to be in better spirits this afternoon. I am going to head out soon for a little bit, then I will be back before bedtime. Tom needs to take a good nap now. Thank you everyone for your continued support and prayers! It is so wonderful and amazing!
Good night, Love,
Roxanne
Tom is alert this morning. Sort of annoyed to be here by his attitude sometimes, but it's mostly due to the pain meds. He's had some very lucid moments, but also vivid hallucinations. Thus far, we believe it is due to coming down off of one pain med he's been on, but his pain seems to be leveling off, so we don't want to give him anything. Gotta keep his brain thinking. He knows the Super Bowl is tomorrow and the teams playing. I'm looking fwd to family and friends visiting this aft. Early appologies to you guys if Tom seems 'short' with any of ya.
Tom has been awake and alert all day so far. I can tell he's pretty tired tho. He had family and some friends come visit this afternoon. Had us all in laughter. Tom knows what's going on for the most part, but still confused and saying weird things, but seems to be in better spirits this afternoon. I am going to head out soon for a little bit, then I will be back before bedtime. Tom needs to take a good nap now. Thank you everyone for your continued support and prayers! It is so wonderful and amazing!
Good night, Love,
Roxanne
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