We're at the end of a long week of chemotherapy now, having awoken bright and early every other morning to get to the hospital for morning rounds (7 a.m.) for the medication we're pinning our hopes on. At first I kinda liked this new way of doing chemotherapy. I falsely thought it would end up being a lot easier on me. Trick!!
On the face of it, it sounded pretty good- no more 4 day stays in the hospital for Phil with the horrible food, the long absences away from the kids, the long stints of my single parenting. I really don't know what the heck I was thinking. I mean, the man is doing chemotherapy still and is a hurting unit. And this business of getting up at o' dark thirty to be at the hospital by 7 a.m., driving there in morning traffic? I am a Lehmann for God's sake. We don't DO o' dark thirty, at least not well, and certainly not arrhythmically every other day for crying out loud. That is a one way ticket to a migraine or at least, major connective tissue pain. My sibs ~ Anita, Terry, Cherie, Peter and Stephen ~ can I get an Amen? You may not have to be a Lehmann to be shanked by this schedule but I can testify that it sucks big time. I do think it is better than having Phil inpatient for 4 days for sure, but on my end, it has been pretty ugly. Just ask my kids - they'll set you real straight. I haven't been the Mommy I want them to remember when they look back.
Perhaps it's the mild heat wave, perhaps it's that I'm still unpacking and trying to find a place for everything and I don't like the level of chaos around me. Perhaps it's that our house is a bit of a jalopy and keeps presenting me with opportunities to breathe deeply. Perhaps it's that Phil and I are coming up on our 16th wedding anniversary a mere week prior to the one year anniversary of his diagnosis and both feel so deeply depleted that celebrating isn't precisely on our radar. One things for dang sure, I am losing my ability to let things roll off my back. Nope, things have been piling right up.
And then, Saturday night a compassionate group of loving, generous friends and childhood neighbors, led by the amazing Kathi Taymans McShane, came together in Pittsburgh for an auction and raised nearly $10,000 on our behalf - because of Phil and who he is to them, who he was as a kid in Edgewood. Because of cancer and the scourge it is and the way it has touched and hurt many. Yet again, as I reflected on how sick and tired I was of being sick and tired, someone in the body of Christ came alongside to do what I could not. Kathi showed me when I could not see or recall it to mind that God is at work through His people, surrounding us with many shoulders to carry this burden - prayerfully and financially. Through people to love on my kids when I'm not Mommy of the year and friends who call or drop me a note to remind me I'm not living in isolation.
Phil is in the recovery phase of his chemotherapy now. Tired, tired, tired. And me? I am in crisis stage again, I just didn't recognize it for what it was until now. I am tired, tired, tired. I do not know what will happen for my husband or for my family. I'll hope to know more in about three weeks. Then there will be another decision tree and yet another path on this road. This really isn't any way to live. But hey, it really is.
Tuesday, July 19, 2011
Thursday, July 14, 2011
Today Was a Good Day
Yesterday was the first day of Phil's new chemotherapy drug, Arranon (nelarabine), and he did pretty well with it. We arrived at 7 a.m. to 3 South and although they were expecting us, the pharmacist waited until we'd fully checked in to prepare his medication and send it to the floor. It costs $6800 per dose so they don't take any chances with no-shows. By 9:30, after his pre-chemo medications and several mis-starts for one reason or another, he was on the I.V. and doing fine. It only took about 2 1/2 hours and then after a little bit of paperwork we were on our way home. Incredible compared to those 4 day stints!
Some mild nausea was about all Phil experienced while in the hospital and it passed once he took his regular medications at home. It wasn't until early evening when he really crashed and felt the full effects - turning into what looked like a couch pillow, slumping over with zero energy and literally running out of "gas". It was off to bed and a hard night's sleep. Thankfully though, no serious side effects.
Today went fairly well. He watched the Tour de France (on Bastille Day!), ate well, and even managed a few trips to help me take things to the storage area below the house. Amazingly, he felt well enough to happily agree to have two of the kid's playmates over and slept like a newborn baby on the couch while they ran in and out of the house screaming like banshees. That tells you a lot about where he was today. God how I wish I could sleep that deeply.
Tomorrow and Sunday he gets up and does it all again. Then we watch and wait over the next 2-3 weeks as his body takes it's time to recover and the cancer cells hopefully die a quick death. In another few weeks when he is feeling stronger he will have his CT scan repeated and we'll see where we are. See what the future holds. But that comes later.
We live our lives one day at a time and today was a good day.
Some mild nausea was about all Phil experienced while in the hospital and it passed once he took his regular medications at home. It wasn't until early evening when he really crashed and felt the full effects - turning into what looked like a couch pillow, slumping over with zero energy and literally running out of "gas". It was off to bed and a hard night's sleep. Thankfully though, no serious side effects.
Today went fairly well. He watched the Tour de France (on Bastille Day!), ate well, and even managed a few trips to help me take things to the storage area below the house. Amazingly, he felt well enough to happily agree to have two of the kid's playmates over and slept like a newborn baby on the couch while they ran in and out of the house screaming like banshees. That tells you a lot about where he was today. God how I wish I could sleep that deeply.
Tomorrow and Sunday he gets up and does it all again. Then we watch and wait over the next 2-3 weeks as his body takes it's time to recover and the cancer cells hopefully die a quick death. In another few weeks when he is feeling stronger he will have his CT scan repeated and we'll see where we are. See what the future holds. But that comes later.
We live our lives one day at a time and today was a good day.
Monday, July 11, 2011
Power of Prayer
My sister Terry is currently in Israel in conjunction with her work as a mammography technologist and educator working for the Department of Defense at Naval Medical Center here in San Diego. In addition to lecturing and educating the local professionals, she is sharing her travels with her son Josh, my nephew, whom you've heard plenty about and he is enjoying some well-deserved R and R.
As Terry said before she left, it feels weird for our families to be apart. They have been on the frontline during this siege from day one and have been there for every single episode in the saga. They are on speed dial, know where everything is in our house, know the kids routines for bedtime, and have our backs for everything and anything. There is nothing they haven't done for us or won't do. It's just an understanding and it is priceless.
Having said all that we are so happy for Josh's opportunity to go with Terry on this trip, to see the wider world and take a break from being amazing for awhile. For him to just be a 27 year old guy and live for himself a while. We'll be here when he gets back, believe me. And Terry, well, Mother Teresa she will always be. But for the next 10 days or so she can ponder the mysteries of the Holy Lands, refresh her soul, deepen her faith and capture the beauty of it all in her camera lens.
No matter what, they are ceaseless in their efforts on our behalf, and they continue their prayer efforts half way around the world. We are blessed to have them as family.
As Terry said before she left, it feels weird for our families to be apart. They have been on the frontline during this siege from day one and have been there for every single episode in the saga. They are on speed dial, know where everything is in our house, know the kids routines for bedtime, and have our backs for everything and anything. There is nothing they haven't done for us or won't do. It's just an understanding and it is priceless.
Having said all that we are so happy for Josh's opportunity to go with Terry on this trip, to see the wider world and take a break from being amazing for awhile. For him to just be a 27 year old guy and live for himself a while. We'll be here when he gets back, believe me. And Terry, well, Mother Teresa she will always be. But for the next 10 days or so she can ponder the mysteries of the Holy Lands, refresh her soul, deepen her faith and capture the beauty of it all in her camera lens.
No matter what, they are ceaseless in their efforts on our behalf, and they continue their prayer efforts half way around the world. We are blessed to have them as family.
Josh praying at Christ's Tomb
Candles at The Church of the Holy Sepulchre
Saturday, July 9, 2011
Relapse
If you haven't heard, the Conrad Family has been through some changes of late. We moved to a new home over the first weekend of July and were accused by our mover-friends of being hoarders. It was the hottest week we could have picked to do the move and I, too was kinda mortified by how much stuff we still have. I truly did downsize when we left Washington but realized anew that our situation has changed yet again. While we find ourselves blessed to be living in a cool old rustic 1500 sq ft house built in the 30's-50's, we're trying to fit 2800 sq feet of household into it. Not gonna work. So, my garage sale is turning into an Estate Sale and I'm OK with it. Nothing like a good purge to set things right!
Our summer is well underway and Bennett is now hitting 50 mph in the batting cages and is excelling in baseball playing catcher, 2nd base and center field depending on where his arm and "leadership" are needed. He's got a great coach and team and has stayed with the core members since early last year. Olivia is Bennett's favorite understudy, catching well and hitting hard enough that we have to direct her away from the house. She swims like a fish and sings all the time. She continues to have a sweet and happy heart. A puppy and a kitten are tops on the list for them once we get settled into our new domicile - promises made in WA and long awaited to be fulfilled.
As for Phil, I mentioned in my last blog that he is no longer in remission and we are at a crossroads concerning his treatment. To review, during his last chemotherapy course he developed another pleural effusion and a CT scan and thoracentesis were performed. Those results were compared to the previous CT from 9 weeks prior and showed the return of a 5 cm lymph node in his chest and pleural fluid full of cancerous lymph cells. Fortunately however, despite some very tough days once he came home he was able to remain out of the hospital and without complications with this last course of chemo and he avoided having a blood transfusion! It was the only time he's made it through a course without any "problems"! Better late than never : )
It has been an intense few weeks of recovery for he and I. We are in the midst of a major move. There has been much to ponder. There have been decisions to be made about what if anything to say to the kids. Initially we had to wait until Phil was through the worst of the recovery before we could even begin to address what comes next. Then slowly Dr. Kossman began to explain that the nature of Phil's disease has changed. He told us to think of it as more of an ALL picture, acute lymphoblastic leukemia, the most common type of childhood leukemia. Not only has the name changed but he will no longer be treated with the Hyper-CVAD regimen because he relapsed on it. Initially Kossman spoke of trying various chemotherapeutic drug combinations to try to "buy some time". Sobering words.
Then just a few days ago at our last meeting, he told us of a new FDA-approved drug specifically for relapsed T-cell lymphocytic lymphoma and ALL. It is so new that he has no experience with it and spent the weekend reading up on the medical literature. It is also very expensive and we are waiting to hear if our insurance company will be covering it. We are hopeful as Phil is the perfect candidate. We have received approval from Alvarado Hospital to treat him with it there and are happy to learn that it is an outpatient therapy given one time every week and a half! No more 4 day stints with bad food!!
To prepare, Phil had another CT scan this week to determine what his last chemotherapy regimen accomplished. We are hoping the 5 cm chest mass was shrunken somewhat by the chemo and we are anxious to hear about that. His kidneys are still a bit taxed from all the medications but he is still strong enough to move some furniture around, unpack boxes and soldier on. He is far from done fighting and we are thanking God for His incredible timing on this new drug. We have yet to really fill the kids in on all the changes that are going on. We figure they've seen their Dad come home from chemo, the usual tired and run down guy. He's bounced back and is doing better, for now. To try to explain all the nuances is more complicated than they need when everything all looks the same to them. When things start looking different or Daddy isn't responding to the new drug then we'll have something to talk about. As Phil says, they've had plenty of sadness and worry already.
It's interesting though, the other day when Phil was particularly tired and napping on my sister's couch, Bennett could be overheard saying aloud to no one in particular, "I don't think Dad's in remission anymore".
Our lives are, as ever, in His precious hands.
Our summer is well underway and Bennett is now hitting 50 mph in the batting cages and is excelling in baseball playing catcher, 2nd base and center field depending on where his arm and "leadership" are needed. He's got a great coach and team and has stayed with the core members since early last year. Olivia is Bennett's favorite understudy, catching well and hitting hard enough that we have to direct her away from the house. She swims like a fish and sings all the time. She continues to have a sweet and happy heart. A puppy and a kitten are tops on the list for them once we get settled into our new domicile - promises made in WA and long awaited to be fulfilled.
As for Phil, I mentioned in my last blog that he is no longer in remission and we are at a crossroads concerning his treatment. To review, during his last chemotherapy course he developed another pleural effusion and a CT scan and thoracentesis were performed. Those results were compared to the previous CT from 9 weeks prior and showed the return of a 5 cm lymph node in his chest and pleural fluid full of cancerous lymph cells. Fortunately however, despite some very tough days once he came home he was able to remain out of the hospital and without complications with this last course of chemo and he avoided having a blood transfusion! It was the only time he's made it through a course without any "problems"! Better late than never : )
It has been an intense few weeks of recovery for he and I. We are in the midst of a major move. There has been much to ponder. There have been decisions to be made about what if anything to say to the kids. Initially we had to wait until Phil was through the worst of the recovery before we could even begin to address what comes next. Then slowly Dr. Kossman began to explain that the nature of Phil's disease has changed. He told us to think of it as more of an ALL picture, acute lymphoblastic leukemia, the most common type of childhood leukemia. Not only has the name changed but he will no longer be treated with the Hyper-CVAD regimen because he relapsed on it. Initially Kossman spoke of trying various chemotherapeutic drug combinations to try to "buy some time". Sobering words.
Then just a few days ago at our last meeting, he told us of a new FDA-approved drug specifically for relapsed T-cell lymphocytic lymphoma and ALL. It is so new that he has no experience with it and spent the weekend reading up on the medical literature. It is also very expensive and we are waiting to hear if our insurance company will be covering it. We are hopeful as Phil is the perfect candidate. We have received approval from Alvarado Hospital to treat him with it there and are happy to learn that it is an outpatient therapy given one time every week and a half! No more 4 day stints with bad food!!
To prepare, Phil had another CT scan this week to determine what his last chemotherapy regimen accomplished. We are hoping the 5 cm chest mass was shrunken somewhat by the chemo and we are anxious to hear about that. His kidneys are still a bit taxed from all the medications but he is still strong enough to move some furniture around, unpack boxes and soldier on. He is far from done fighting and we are thanking God for His incredible timing on this new drug. We have yet to really fill the kids in on all the changes that are going on. We figure they've seen their Dad come home from chemo, the usual tired and run down guy. He's bounced back and is doing better, for now. To try to explain all the nuances is more complicated than they need when everything all looks the same to them. When things start looking different or Daddy isn't responding to the new drug then we'll have something to talk about. As Phil says, they've had plenty of sadness and worry already.
It's interesting though, the other day when Phil was particularly tired and napping on my sister's couch, Bennett could be overheard saying aloud to no one in particular, "I don't think Dad's in remission anymore".
Our lives are, as ever, in His precious hands.
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