At this point in time Dana has completed her chemo and had her stem cell transplant. According to the doctor and nurses everything is going according to plan. Sounds great right? Allow me to detail what that plan has included since she finished chemo on the 26th. She spent Friday, Saturday and Sunday hardly able to keep anything down. Every time they thought they had the anti-nausea cocktail correct it would come right back. In addition to this she had absolutely no energy and all she wanted to do is sleep. That was fine because she was doing what her body said it needed. On Monday, the mouth sores started and got so severe she had to have IV pain meds along with a concoction of topical agents to put in her mouth to help with the sores.
By the end of the week all of her blood counts have dropped to either non-existent or low enough to require transfusions. I have had the easy part from a physical standpoint. For me the emotional toll has really kicked me this week. If I was at the hospital where Dana needed me I was watching her suffer which is never an easy thing to do with someone you love. By being there I felt like I was letting our kids down and left them at home with grandmas screaming and crying for me not to go. I have spent the past almost two weeks feeling like I was never in the right place because I knew someone else needed me. I have no idea how many trips between home and the hospital I have made or will make in the coming weeks. No matter how pissed I get at the situation I continually have to remind myself that I need to try and put myself in our kids shoes. They have been able to see Dana actually quite a bit which is great. Dugan has become a little protector of Dana and wants to be there all the time.
I realize though that they have no point of reference in order to process all of this. I wonder all the time if I am doing the right thing for them in how I am spending time with them and taking them to see Dana. Rationally, I know I am being a support for Dana, but emotionally I feel like I am not doing anything because I cannot take away the suffering.
Today was the day Dana decided to shave her head after her hair was coming out in clumps. As I mentioned before that is incredibly painful to watch. I cannot tell her enough how beautiful of a bald lady she is, but it doesn't change the fact that she has cancer and is still in the hospital and still feels terrible.
My goal in all of this is to let others in to what if feels like to go through this. The short answer is that I have been so angry this week I feel like I want to jump out of my skin. Everything I have written to this point is just an update on what has been going on with Dana. I cannot even begin to describe the level of anger I have about cancer and the toll it takes. My list of things I am angry about is a mile long, but somehow I am keeping it together. To quote Mr. T from my childhood A-Team days, "I pity the fool" that crosses me.
Sunday, September 4, 2011
Friday, August 26, 2011
Day 4 in Dana's Spa Like Prison
Today is Day 4 of chemo for Dana and we have not been able to keep up on getting updates out to everyone so here it is. This the last day of chemo for Dana. It has completely knocked her out. I don't know if this is due to a combination of the chemo or slew of anti-nausea drugs they have given. She has been able to sleep a ton, but it is frustrating for her because that is all she wants to do and pee. The peeing part has gotten old due to being attached to an IV pole 24 hours a day. They are pumping ridiculous amounts of fluid through her to not only keep her hydrated, but protect her kidneys and bladder from the chemo.
On a positive side she has been able to manage the nausea and still has her hair. Unfortunately, it sounds like next week is going to be the roughest week. It is then where her white blood cell counts will bottom out and she will feel the worst.
Thank you to everyone that has called, emailed, texted, facebook messaged, etc over the past several days. She is getting them, but has not had the energy to respond yet. That will come in time. I took a walk with her around the unit today and that zapped her strength.
We will do our best to keep everyone updated on things, but thought this was a quick way to get to everyone.
On a positive side she has been able to manage the nausea and still has her hair. Unfortunately, it sounds like next week is going to be the roughest week. It is then where her white blood cell counts will bottom out and she will feel the worst.
Thank you to everyone that has called, emailed, texted, facebook messaged, etc over the past several days. She is getting them, but has not had the energy to respond yet. That will come in time. I took a walk with her around the unit today and that zapped her strength.
We will do our best to keep everyone updated on things, but thought this was a quick way to get to everyone.
Tuesday, August 23, 2011
What a Day!
It is almost 1:30 on Wednesday morning and I am still going from Tuesday morning. Today was Dana's first day of chemo. The day started out as a complete cluster. From the get go at admissions there was uncertainity as to where she was supposed to be, when she was to report there and what she was supposed to have done etc. The day only became increasingly frustrating as it was after 7:30 before she was finally moved to her room. I can only imagine the emotional and mental toll of fear and anxiety this takes on her. As we entered the cancer center all the memories came back for me from the last time she had chemo. I was reminded again of how brutal a process this is.
Unfortunately, we have perspective on treatment. To me this makes this worse and I know it does for Dana. She knows what to expect. She knows which anti-nausea drugs work and don't work. I have the perspective of watching again stupidly, toxic chemicals being put into my wife's body. When you watch the nurse put a gown on with gloves to attach a bag to an iv pole and to a line it scares you. When they have to give multiple doses of one drug to protect her bladder and kidneys against another drug because it is so toxic I just feel like I have been kicked in the gut again and again. Having perspective in cancer treatment doesn't make it easier it only makes it more difficult because you know how bad it will be and you just wait for it to hit.
Before her treatment even started for Dana we had friends flaking out on commitments and promises they had made. In talking to other patients, close friends, caregivers, etc., it seems as if individuals just can't deal with things. So either they say something incredibly stupid, because they don't know what to say or they just fade into the background letting down patients who desperately need what they were offering. It can be as simple as a quick text message saying, I was thinking about you and wanted to know how you were doing. The problem is that you have to be prepared for a patient to tell you it has been a terrible day or they feel like crap. That is okay. Sometimes the best thing you can say is this situation really sucks and I hate that you have to through it. The continuous keep it positive sentiments burn you out. You want friends that can listen, commiserate and make you laugh when needed. I watched the smile grow on Dana's face when she saw our kids tonight and she has friends coming to see her tomorrow that will make her laugh in spite of the situation.
That's when you know you have true friends. When they can see you at your worst, not care about it and still make you laugh or cry in a good way. They can also let you cry in a bad way and not think a thing about it.
Unfortunately, we have perspective on treatment. To me this makes this worse and I know it does for Dana. She knows what to expect. She knows which anti-nausea drugs work and don't work. I have the perspective of watching again stupidly, toxic chemicals being put into my wife's body. When you watch the nurse put a gown on with gloves to attach a bag to an iv pole and to a line it scares you. When they have to give multiple doses of one drug to protect her bladder and kidneys against another drug because it is so toxic I just feel like I have been kicked in the gut again and again. Having perspective in cancer treatment doesn't make it easier it only makes it more difficult because you know how bad it will be and you just wait for it to hit.
Before her treatment even started for Dana we had friends flaking out on commitments and promises they had made. In talking to other patients, close friends, caregivers, etc., it seems as if individuals just can't deal with things. So either they say something incredibly stupid, because they don't know what to say or they just fade into the background letting down patients who desperately need what they were offering. It can be as simple as a quick text message saying, I was thinking about you and wanted to know how you were doing. The problem is that you have to be prepared for a patient to tell you it has been a terrible day or they feel like crap. That is okay. Sometimes the best thing you can say is this situation really sucks and I hate that you have to through it. The continuous keep it positive sentiments burn you out. You want friends that can listen, commiserate and make you laugh when needed. I watched the smile grow on Dana's face when she saw our kids tonight and she has friends coming to see her tomorrow that will make her laugh in spite of the situation.
That's when you know you have true friends. When they can see you at your worst, not care about it and still make you laugh or cry in a good way. They can also let you cry in a bad way and not think a thing about it.
Tuesday, August 9, 2011
What you don't know
My original intent was to somehow share what if feels like to be the spouse of a cancer patient. I think I may have set my sights a tad high, because I am finding that impossible. Monday, Dana was scheduled to have a temporary central line placed for her stem cell collection. We spent almost three hours in the waiting room alone. This is what Dana had to deal with after that.
So that looks uncomfortable, but not unbearable. It was placed so she could have her stem cells harvested today. This involves being hooked up to a machine with her blood being pumped out one line, run through a massive machine to collect stem cells and then pumped back in through the other line. Doesn't sound too bad to the average person. However, when you are watching your wife's blood being pumped out there is no way in the world you can't freak out. Now for the part you don't know going in for the placement is what they are putting into your neck.
As a point of reference that is an ipad, not an ipod. This procedure was done after she spent the last four days giving herself two injections every morning to boost her blood counts and move the stem cells to the bloodstream. This causes major bone pain that Dana described as feeling like she was kicked by a horse in both hips or labor from the waist down. Again, this isn't her treatment yet, this is the prep for the treatment. As a husband this kills me because I cannot take the pain away.
My mind never stops. I fall asleep only because I have nothing left to give at the end of the day. To say that I am scared may be the equivalent saying the US has a small debt problem. I have a constant pit in my stomach, a constant fear of not being able to help Dana, a constant fear that I am not giving my kids what they need when Dana is away. I don't think it is possible to truly understand these feelings unless you are the husband or wife of a cancer patient, a parent with a young child with cancer or a military spouse with your spouse deployed. It just isn't the same unless you are under the same roof.
What you don't see is your best friend so tired they can barely move or cleaning out a bowl of vomit because you know the next one is right around the corner. You don't see the raw emotion of someone losing their hair. You don't see the reactions your kids have when mommy is sick. To be slightly biased I am very good dad. I am involved. I adore my kids. I would die for them, but I am not mommy. I am scared to death that when Dana is in the hospital I won't be enough for them. I will make countless trips between our house, my job and the IU Cancer Center in the coming weeks for Dana, for me, for the kids, for friends and family. But I cannot help but wonder will it be enough?
My mind never stops. I fall asleep only because I have nothing left to give at the end of the day. To say that I am scared may be the equivalent saying the US has a small debt problem. I have a constant pit in my stomach, a constant fear of not being able to help Dana, a constant fear that I am not giving my kids what they need when Dana is away. I don't think it is possible to truly understand these feelings unless you are the husband or wife of a cancer patient, a parent with a young child with cancer or a military spouse with your spouse deployed. It just isn't the same unless you are under the same roof.
What you don't see is your best friend so tired they can barely move or cleaning out a bowl of vomit because you know the next one is right around the corner. You don't see the raw emotion of someone losing their hair. You don't see the reactions your kids have when mommy is sick. To be slightly biased I am very good dad. I am involved. I adore my kids. I would die for them, but I am not mommy. I am scared to death that when Dana is in the hospital I won't be enough for them. I will make countless trips between our house, my job and the IU Cancer Center in the coming weeks for Dana, for me, for the kids, for friends and family. But I cannot help but wonder will it be enough?
Sunday, July 31, 2011
It's Not Just Hair
I begin to type this as I am syncing Dana's brand new ipad 2. Dana has decided to move forward with the stem cell transplant and high dose chemo after seeking additional opinions from Northwestern University and the Cleveland Clinic.
Why do I say it's not just hair? Very simply, because that is one of the hardest things Dana will have to go through again and I hate the fact that she has to endure it AGAIN. You could shave my head as I type this and I wouldn't think about it. That isn't the same for the most important woman in my life and not for any of the other women I have talked to where I actually value their opinion.
From my humble, male perspective and listening skills, hair to women is part of their identity. It is part of what makes them so beautiful to us cavemen. Our three year old daughter already knows that girls are pretty in part because of their hair. It is what makes them unique. It is a routine. By losing it you take all that away. It then makes them a patient. It makes them different. It jacks up their routine. I am quite biased when it comes to how beautiful Dana is and for me she could be bald for the rest of her life and I wouldn't care. But that isn't what my point it is.
My point is this, cancer sucks. I would trade places with Dana in a heartbeat to take every ounce of pain and suffering away from her. If you haven't had a close family member or friend go through cancer treatment you don't know how much it sucks. I am preparing to have my wife and mother of our children in the hospital for about a month. Think about that. It's a big difference from the routine business trip or get away weekend most folks take. Then once she comes home she still has one-two months of recovery at home. She had a battery of tests late this week as part of the screening process for the transplant. Over the next two weeks she will take injections to move her stem cells to the blood stream from the bone marrow and then harvest them. Once she is in the hospital she will have five days of high-dose chemo. That is one of the worst parts for me, because all I can do watch.
I apologize for the down note, but we have taken an unofficial position to help educate everyone on what really happens when someone has cancer and is treated for it. The impact is on the patient physically and mentally. The caregiver begins an incredible juggling act of schedules that will make your head spin. That is for the adults. We can process it and understand what is going on and why things are being done. But we also have young kids, I am really worried about how they will handle it as well. My hope and prayer is that somehow I will have the strength to keep them on tract and get mommy home and better.
Why do I say it's not just hair? Very simply, because that is one of the hardest things Dana will have to go through again and I hate the fact that she has to endure it AGAIN. You could shave my head as I type this and I wouldn't think about it. That isn't the same for the most important woman in my life and not for any of the other women I have talked to where I actually value their opinion.
From my humble, male perspective and listening skills, hair to women is part of their identity. It is part of what makes them so beautiful to us cavemen. Our three year old daughter already knows that girls are pretty in part because of their hair. It is what makes them unique. It is a routine. By losing it you take all that away. It then makes them a patient. It makes them different. It jacks up their routine. I am quite biased when it comes to how beautiful Dana is and for me she could be bald for the rest of her life and I wouldn't care. But that isn't what my point it is.
My point is this, cancer sucks. I would trade places with Dana in a heartbeat to take every ounce of pain and suffering away from her. If you haven't had a close family member or friend go through cancer treatment you don't know how much it sucks. I am preparing to have my wife and mother of our children in the hospital for about a month. Think about that. It's a big difference from the routine business trip or get away weekend most folks take. Then once she comes home she still has one-two months of recovery at home. She had a battery of tests late this week as part of the screening process for the transplant. Over the next two weeks she will take injections to move her stem cells to the blood stream from the bone marrow and then harvest them. Once she is in the hospital she will have five days of high-dose chemo. That is one of the worst parts for me, because all I can do watch.
I apologize for the down note, but we have taken an unofficial position to help educate everyone on what really happens when someone has cancer and is treated for it. The impact is on the patient physically and mentally. The caregiver begins an incredible juggling act of schedules that will make your head spin. That is for the adults. We can process it and understand what is going on and why things are being done. But we also have young kids, I am really worried about how they will handle it as well. My hope and prayer is that somehow I will have the strength to keep them on tract and get mommy home and better.
Thursday, July 14, 2011
The Tour
As an update on Dana's cancer since confirming the relapse of her Hodgkin's disease Dana and I have made a pretty decent tour of some incredible medical institutions. Last week's tour stop was Northwestern University to meet with their lymphoma expert. Her recommendation was the most aggressive treatment plan including radiation therapy, high-dose chemo and an autologous stem cell transplant.
This week's tour stop was the Cleveland Clinic to see their top radiation oncologist and lymphoma expert. The consensus from them was high-dose chemo and an autologous stem cell transplant. The rationale for this is that it gives Dana the highest chance of curing the cancer. Which is exactly what I want as her husband.
So what does that really involve, here is the breakdown, 2-3 treatments of chemo which will require about 2 days in the hospital for each one roughly 2-3 weeks apart. After that they will do another PET scan to make sure no disease is present and then do the stem cell transplant. That requires the oncologist to harvest her own stem cells and then give them back to her. The hospital stay for this is typically 3-4 weeks in an isolated transplant unit.
I don't know how to accurately describe what it feels like to love your spouse more than life itself and then be completely powerless to help them. Impotent doesn't do it justice. Failure isn't accurate. As a dad, a husband and average guy I want to fix things. It doesn't mean I am always good at it, but if you bring a problem to me I try to fix it. If our kids fall down and scrape a knee I can fix that. Broken toy, no problem. Rough day at work, well I will give you a solution whether or not it truly fixes the problem is up for debate. But this I can't fix this for Dana and I truly hate that feeling. Dana hasn't asked why me and quite honestly it doesn't matter, because medically no one knows what causes it.
I have all the confidence in the world that she will beat this again, but it won't be an easy fight. Hopefully, her three biggest groupies give her all the incentive she ever needs to fight through everything to be cured.
Dana's groupies.
This week's tour stop was the Cleveland Clinic to see their top radiation oncologist and lymphoma expert. The consensus from them was high-dose chemo and an autologous stem cell transplant. The rationale for this is that it gives Dana the highest chance of curing the cancer. Which is exactly what I want as her husband.
So what does that really involve, here is the breakdown, 2-3 treatments of chemo which will require about 2 days in the hospital for each one roughly 2-3 weeks apart. After that they will do another PET scan to make sure no disease is present and then do the stem cell transplant. That requires the oncologist to harvest her own stem cells and then give them back to her. The hospital stay for this is typically 3-4 weeks in an isolated transplant unit.
I don't know how to accurately describe what it feels like to love your spouse more than life itself and then be completely powerless to help them. Impotent doesn't do it justice. Failure isn't accurate. As a dad, a husband and average guy I want to fix things. It doesn't mean I am always good at it, but if you bring a problem to me I try to fix it. If our kids fall down and scrape a knee I can fix that. Broken toy, no problem. Rough day at work, well I will give you a solution whether or not it truly fixes the problem is up for debate. But this I can't fix this for Dana and I truly hate that feeling. Dana hasn't asked why me and quite honestly it doesn't matter, because medically no one knows what causes it.
I have all the confidence in the world that she will beat this again, but it won't be an easy fight. Hopefully, her three biggest groupies give her all the incentive she ever needs to fight through everything to be cured.
Friday, July 1, 2011
How do I handle this again?
At this point we have met with Dana's primary oncologist for his treatment recommendation and a radiation oncologist at the IU Cancer Center. Next week brings a trip to Northwestern to see the lymphoma expert there and the week after is a trip to the Cleveland Clinic to see their lymphoma expert and radiation oncologist.
So you may ask how do you handle the stress of this? Well, in part you don't sleep. I have found that I cannot shut my brain off now. It is only from pure exhaustion that I eventually fall asleep. As I talked to a friend of mine this week who watched his child undergo pretty stressful testing you start to wonder how do we do it? Not only to both of us work full time, but we have 2 young children and we are both incredibly involved parents. I found the first time around I existed on pure adrenaline and a constant state of confusion. I am hoping this time around I will be able to get rid of the confusion part.
As a husband I want to have this aura of strength for Dana, and as a father I want to have that strength for my kids. They know mommy is sick and will have to get very strong medicine, but at their young age it doesn't seem like they understand the severity of cancer. That is a probably a good thing at this point in time. After writing all that I look back and wonder where I am going to pull that strength from again. After watching the new Transformers movie tonight with friends I wish had some alien energy source like the Autobot's to save everyone. At least my son and I would think that was cool.
Over the past several weeks in relaying the events leading up to this with friends a common theme is apparent-you do what you have to do to get through things. You look at your wife and see her fighting through things and you know you can't let her down so you push a little harder, you unload the dishwasher when you want to crash, you read an extra story to your kids or lay down with them to get them to sleep even though you have a couple of hours worth of work to still to do.
Bottom line is that it isn't about you, at least not primarily. It is about taking care of your wife as the patient and your kids because one of their heroes is laid up in the hospital or in bed. I didn't take care of myself the last time around and I have to fix that. Maybe I will pick up running again and find the relief runners always talk about, but has always escaped me.
I guess whatever stressful situation you find yourself it seems like we always find a way to get through it.
I would be willing to bet that if I surveyed my friends and co-workers we wouldn't be able to accurately state how you get through something other than you just do. My apologies for the rambling this evening, but in my defense is it 2:30 am.
Todd
So you may ask how do you handle the stress of this? Well, in part you don't sleep. I have found that I cannot shut my brain off now. It is only from pure exhaustion that I eventually fall asleep. As I talked to a friend of mine this week who watched his child undergo pretty stressful testing you start to wonder how do we do it? Not only to both of us work full time, but we have 2 young children and we are both incredibly involved parents. I found the first time around I existed on pure adrenaline and a constant state of confusion. I am hoping this time around I will be able to get rid of the confusion part.
As a husband I want to have this aura of strength for Dana, and as a father I want to have that strength for my kids. They know mommy is sick and will have to get very strong medicine, but at their young age it doesn't seem like they understand the severity of cancer. That is a probably a good thing at this point in time. After writing all that I look back and wonder where I am going to pull that strength from again. After watching the new Transformers movie tonight with friends I wish had some alien energy source like the Autobot's to save everyone. At least my son and I would think that was cool.
Over the past several weeks in relaying the events leading up to this with friends a common theme is apparent-you do what you have to do to get through things. You look at your wife and see her fighting through things and you know you can't let her down so you push a little harder, you unload the dishwasher when you want to crash, you read an extra story to your kids or lay down with them to get them to sleep even though you have a couple of hours worth of work to still to do.
Bottom line is that it isn't about you, at least not primarily. It is about taking care of your wife as the patient and your kids because one of their heroes is laid up in the hospital or in bed. I didn't take care of myself the last time around and I have to fix that. Maybe I will pick up running again and find the relief runners always talk about, but has always escaped me.
I guess whatever stressful situation you find yourself it seems like we always find a way to get through it.
I would be willing to bet that if I surveyed my friends and co-workers we wouldn't be able to accurately state how you get through something other than you just do. My apologies for the rambling this evening, but in my defense is it 2:30 am.
Todd
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