Another eventful morning for us - Phil woke up nauseated and had dry heaves which has been the norm for over a week now. I suggested we shower together because he was vey unsteady and that way I could make sure he wouldn't fall. By the end he was totally exhausted and had to go back to bed for awhile. He was nauseated again and we ran late to the appt.
Dr. Kossman took a good look at him and reexamined all his nodes and systems. The supraclavicular node measured 2 cm still but the axillary one is 3 cm at it's longest. His liver span is 1 cm down from it's maximum of 4 cm when he was hospitalized for the out of control blood sugar. His spleen is tender but not enlarged. His wt today is 190, up from 185 last week but is falsely elevated - that 5 lb difference represents water weight since he is hardly eating and has 3+ pitting edema in his feet and ankles, extending just to above his knees.
Of major significance, his platelets were only 22K today after being transfused on Friday. They were 20k on Friday before transfusion so are rapidly being destroyed. Also, it's been 4 days since his last thorocentesis when almost 2 liters of fluid were removed from around his left lung and he's now got about 3 inches difference in dullness to percussion again. This is the shortest interval yet in which his pleural effusion has developed.
The low platelets are Kossman's biggest concern today. It's hard to tell whether they are low from the Campath or from lymphoma in the marrow without doing a bone biopsy. But if there is active disease elsewhere it is very likely to be in the marrow as well. So, we're at a philosophical junction again. Do more Campath and risk a further plummet in platelets? Or stop Campath and watch platelets for a few days then restart treatment (risking further time with unopposed disease)? And how do we best judge the overall effectiveness of Campath?
Dr. Kossman also spoke the words "we're running out of bullets" and mentioned the drug Romidepsin as the real last resort. It is for cutaneous T cell lymphoma and maybe an orphan drug (approved for only one diagnosis) for that matter and not to be approved by insurance. It's in the $10k range per dose which, without approval or well documented studies regarding efficacy, presents a whole additional set of philosophical questions. Anyway, he told Phil he thought the disease had reduced by about 50% on Campath but was still very active and he still has significant issues with the effusions, edema, platelets, continued marrow involvement and nodes in chest, neck, axilla that aren't fully responding. He says most patients have full response by 12 weeks but that after 12 DOSES it is usual to reevaluate.
Phil chose to go on with treatment today. It is going to be a Herculean effort on his part. Tomorrow will be Ambisone. Then Dr. Kossman will see him on Wed. and recheck the CBC. Otherwise, Kossman wants to give the last 2 doses he has here in the office (IV) then re-evaluate where Phil is and where to go at that point.
And that's the update for today. I'm tired but managing. The kids are struggling and crying more often. They are sensing what is going on and are very aware of Phil's diminishing capacities. We all are and it gets more difficult to watch as the days pass. We love him and see him fighting and hope he will get better. Those of us who know him well can imagine a scenario wherein he'll never say quit. Can see the circumstances dictating the outcome for him rather than him ever crying "Uncle". Such is the way of my warrior. No surrender.
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Monday, October 31, 2011
Wednesday, October 26, 2011
God at Work
Not wanting to sound like Debbie Downer all the time I thought it might be a good exercise for myself and a nice testimony to share with you the myriad ways God has shown up lately. Bennett has been having difficulty getting to sleep so we have been praying specifically every night. His anxieties about all that is going on and the tremendous stress he is under culminate at night so he is struggling a lot. He has had tears, fears and separation anxieties and they have been brewing into a real sleep disorder. Accordingly, I have been talking a lot about the promise of peace God makes to us in Philippians 4:6-7 and Bennett and I have been praying together every night about Phil, the range of emotions he is experiencing and God's big plan for our lives~ even when we can't see or understand what He's up to. It's been one more intense road to walk down with my son on this journey with cancer. A heartbreaking path but also a wonderful opportunity to share with him the Truth of who God is and to teach him about the loving and faithful character of God.
Philippians 4:6-7 says "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
My sister Anita recommended that I write down on Post-It notes or in a journal how God answers prayers so Bennett can see God at work. He's been told many times about the story of my pregnancy with him and his miracle birth (Post-It #1) and we will be adding to his original Post-It from now on.
As for my list, it starts with a conversation I had on Sunday. I've been attending church at Jamul Community Church where I feel loved even though I'm hardly known, which Bennett absolutely loves and which Olivia is slowly warming up to (per usual). My dear neighbors Jim and Catherine and their daughter and son-in-law go there as well. Pastor Gary has been teaching from Luke and each sermon I've heard has seemed especially meant for me. I can't make it every Sunday due to Phil's health status but this past Sunday I was able to go and spoke with Pastor right after service. I could barely talk because I was so moved but I told him how overwhelmed I am and how difficult it is to get there regularly, how I needed help, etc. Before I finished getting the words out, he took my hand and said the body was there to help and asked if he could he pray for me. He put his arms around me and said he was a "hugger" and hugged and prayed for me and my family while we both cried. It was...perfect and beautiful and the comfort I have needed from the church body for so long. I have found my church home. Hallelujah!
Yesterday I called the church office and talked about needing meals a few times a week and to have some firewood cut up on our property. Within a few minutes a woman from the congregation called me and by that afternoon she was at our house delivering a casserole, salad, fruit and garlic bread. She also has an idea for getting our wood cut and stacked and just needs the go-ahead. She is part of a care group and they want to more or less adopt us. Later that evening I was telling all this to Jim and Catherine over our fence (and thanking Catherine for the generous check she gave me last week along with a beautiful basket of pumpkins). We talked about how challenging it still is for me to ask for help and how I am trying to stop saying "No" for everyone. So, I told them about the firewood and our poor heating situation - another blog topic perhaps - and she texted me later that evening to say she and Jim had firewood to bring over to us today. I said Yes they could bring it over : )
Lastly, earlier in the day I had a visit from Trenna. She told me that she and several of our friends had talked about either taking me out to make Dream Dinners or if I couldn't go, to make them for me. She and her work out partner also plan on taking a day off from "real" working out and coming over here instead and moving all my boxes off of the dank floor and onto pallets in my storage area. What I did to deserve such love and acts of service I'm sure I don't know ~ it's the Body of Christ at work in the lives of His loved ones.
God IS showing up and He is blessing us demonstrably in this maelstrom. Take note Bennett! The Post-Its are piling up because He loves you and I and Olivia and your Daddy fiercely. You will sleep soundly again. Great is His Faithfulness.
Philippians 4:6-7 says "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
My sister Anita recommended that I write down on Post-It notes or in a journal how God answers prayers so Bennett can see God at work. He's been told many times about the story of my pregnancy with him and his miracle birth (Post-It #1) and we will be adding to his original Post-It from now on.
As for my list, it starts with a conversation I had on Sunday. I've been attending church at Jamul Community Church where I feel loved even though I'm hardly known, which Bennett absolutely loves and which Olivia is slowly warming up to (per usual). My dear neighbors Jim and Catherine and their daughter and son-in-law go there as well. Pastor Gary has been teaching from Luke and each sermon I've heard has seemed especially meant for me. I can't make it every Sunday due to Phil's health status but this past Sunday I was able to go and spoke with Pastor right after service. I could barely talk because I was so moved but I told him how overwhelmed I am and how difficult it is to get there regularly, how I needed help, etc. Before I finished getting the words out, he took my hand and said the body was there to help and asked if he could he pray for me. He put his arms around me and said he was a "hugger" and hugged and prayed for me and my family while we both cried. It was...perfect and beautiful and the comfort I have needed from the church body for so long. I have found my church home. Hallelujah!
Yesterday I called the church office and talked about needing meals a few times a week and to have some firewood cut up on our property. Within a few minutes a woman from the congregation called me and by that afternoon she was at our house delivering a casserole, salad, fruit and garlic bread. She also has an idea for getting our wood cut and stacked and just needs the go-ahead. She is part of a care group and they want to more or less adopt us. Later that evening I was telling all this to Jim and Catherine over our fence (and thanking Catherine for the generous check she gave me last week along with a beautiful basket of pumpkins). We talked about how challenging it still is for me to ask for help and how I am trying to stop saying "No" for everyone. So, I told them about the firewood and our poor heating situation - another blog topic perhaps - and she texted me later that evening to say she and Jim had firewood to bring over to us today. I said Yes they could bring it over : )
Lastly, earlier in the day I had a visit from Trenna. She told me that she and several of our friends had talked about either taking me out to make Dream Dinners or if I couldn't go, to make them for me. She and her work out partner also plan on taking a day off from "real" working out and coming over here instead and moving all my boxes off of the dank floor and onto pallets in my storage area. What I did to deserve such love and acts of service I'm sure I don't know ~ it's the Body of Christ at work in the lives of His loved ones.
God IS showing up and He is blessing us demonstrably in this maelstrom. Take note Bennett! The Post-Its are piling up because He loves you and I and Olivia and your Daddy fiercely. You will sleep soundly again. Great is His Faithfulness.
Sunday, October 23, 2011
The Great Haircut
Monday, October 17, 2011
A Better Day
Phil came home from the hospital on Saturday after his blood sugars came down to normal. For you medical people out there, he was metabolically acidotic (highest blood glucose was 588) and required 2 units of packed RBCs and a unit of platelets. The Campath had taken his hematocrit down from 30% to 24% in 48 hours. Seriously potent stuff.
Now it's Monday and he just finished his second dose of Campath at 5mg (3mg previously) and tolerated it fairly well. Just felt cold at the end but had no actual chills or other side effects like before. After the Campath a liter of normal saline was run in and he started feeling pretty lousy with a bit of nausea and vomiting but some anti-emetics helped with that. Overall, it was a much much better day!
Dr. Kossman examined him and feels he has responded "remarkably well" to the Campath considering what a small dose he was given. His lymph node size has diminished drastically from 2 cm to 1.5 cm in his supraclavicular area and there are no palpable lymph nodes in his underarm or in his neck where previously there were nodes there of 1 and 2 cm respectively. This is phenomenal considering Phil has only received 3% of the total recommended dosage!!
The roller coaster keeps on rolling and we keep hanging on. Today has been pretty good all things considered. We will go home and await the next dip and turn, thankful for the peacefulness of this day thus far. Thank you for your prayers and petitions.
Now it's Monday and he just finished his second dose of Campath at 5mg (3mg previously) and tolerated it fairly well. Just felt cold at the end but had no actual chills or other side effects like before. After the Campath a liter of normal saline was run in and he started feeling pretty lousy with a bit of nausea and vomiting but some anti-emetics helped with that. Overall, it was a much much better day!
Dr. Kossman examined him and feels he has responded "remarkably well" to the Campath considering what a small dose he was given. His lymph node size has diminished drastically from 2 cm to 1.5 cm in his supraclavicular area and there are no palpable lymph nodes in his underarm or in his neck where previously there were nodes there of 1 and 2 cm respectively. This is phenomenal considering Phil has only received 3% of the total recommended dosage!!
The roller coaster keeps on rolling and we keep hanging on. Today has been pretty good all things considered. We will go home and await the next dip and turn, thankful for the peacefulness of this day thus far. Thank you for your prayers and petitions.
Saturday, October 15, 2011
A Moment's Rest
I suppose if you wait long enough things do change. In our case, Phil's blood sugars came down, he was transfused with platelets and RBCs and we both got some much needed sleep. My migraine finally subsided and my hacking cough has settled down a bit. I hesitate to say that we both feel more like ourselves again. He certainly is looking more like himself than he has in about three weeks.
The first wave of the Cavalry (Tricia) left only to be reinforced by my sister Anita who drove down from Pasadena yesterday at rush hour - God bless her through and through. I arrived at the hospital to bring him home today to find him dozing off for a quick nap after breakfast. There's no hurry to get home other than the obvious desire to get outta here so I'm letting him catch some Zzzz's before the nurses come in and do their discharge song and dance. Then we'll be on our way home to rest up until Monday's appointment with Dr. Kossman for the next round of chemo.
Yep. The next round. It will be smaller than previously thought due to the infusion reaction and the chances of having another just like it. Phil does have the option of stopping the Campath and will have the weekend to consider this option. He know's it's his last best option for a chance at remission. He also knows there is the continued possibility of an infusion reaction with the next dose or two and the need for steroids should that happen. However, the literature suggests some people never have another reaction and that is what we are praying for. There is just no way of knowing.
His endocrinologist is concerned that there may be some other underlying metabolic issues at play with his blood sugar control. He did a cortisol suppression test to look at Phil's adrenal gland function while he was here in the hospital. Prior to the Campath and the high blood sugars Phil was having incredibly LOW blood sugars in the morning and I was having difficulty rousing him from sleep. His diabetes has been a very difficult disease to manage given the backdrop of lymphoma and the metabolic disturbances it creates. I do not know the outcome of the suppression test yet but know that Phil's clinical picture continues to be confusing and very challenging to manage. The road ahead narrows and his options lessen daily. Nothing is easy or clear cut anymore. I believe Monday will tell us a lot about the direction things will go from here.
Until then we will enjoy Phil feeling better and having energy. Olivia's 7th birthday will be celebrated with her friends at the bowling alley and we will praise God for the blessing and delight she is. There will be joy in our home, laughter and respite from the troubles of the last few weeks. We will enjoy this temporary peace. We will rest. We will be together. Blessed be His name!
The first wave of the Cavalry (Tricia) left only to be reinforced by my sister Anita who drove down from Pasadena yesterday at rush hour - God bless her through and through. I arrived at the hospital to bring him home today to find him dozing off for a quick nap after breakfast. There's no hurry to get home other than the obvious desire to get outta here so I'm letting him catch some Zzzz's before the nurses come in and do their discharge song and dance. Then we'll be on our way home to rest up until Monday's appointment with Dr. Kossman for the next round of chemo.
Yep. The next round. It will be smaller than previously thought due to the infusion reaction and the chances of having another just like it. Phil does have the option of stopping the Campath and will have the weekend to consider this option. He know's it's his last best option for a chance at remission. He also knows there is the continued possibility of an infusion reaction with the next dose or two and the need for steroids should that happen. However, the literature suggests some people never have another reaction and that is what we are praying for. There is just no way of knowing.
His endocrinologist is concerned that there may be some other underlying metabolic issues at play with his blood sugar control. He did a cortisol suppression test to look at Phil's adrenal gland function while he was here in the hospital. Prior to the Campath and the high blood sugars Phil was having incredibly LOW blood sugars in the morning and I was having difficulty rousing him from sleep. His diabetes has been a very difficult disease to manage given the backdrop of lymphoma and the metabolic disturbances it creates. I do not know the outcome of the suppression test yet but know that Phil's clinical picture continues to be confusing and very challenging to manage. The road ahead narrows and his options lessen daily. Nothing is easy or clear cut anymore. I believe Monday will tell us a lot about the direction things will go from here.
Until then we will enjoy Phil feeling better and having energy. Olivia's 7th birthday will be celebrated with her friends at the bowling alley and we will praise God for the blessing and delight she is. There will be joy in our home, laughter and respite from the troubles of the last few weeks. We will enjoy this temporary peace. We will rest. We will be together. Blessed be His name!
Thursday, October 13, 2011
More Crap Different Day
Well the hits keep coming and it is only natural to ask "how much can one person stand?" Apparently the answer to that question is "quite a lot" because to coin a popular 60's advertising phrase ~ Phil takes a licking and keeps on ticking.
This morning found him admitted to Alvarado Hospital's 3 South with very high blood sugars, dehydration and nausea and vomiting. The last 48 hours have been brutal to say the least and absolutely heroically endured. Phil had been struggling with nausea that barely responded to his medication, dry heaves and vomiting and the discomforts that come with blood sugars in the 400-500 range (normal being 80-120). He's had no appetite, was dry mouthed and thirsty all the time and couldn't sleep. Incidentally, every bone in his body hurts, he's stiff all over and unstable when walking too. Sheesh. Brutal, brutal brutal.
Dr. Kossman checked Phil over thoroughly this morning and ordered an MRI of Phil's head to check on the status of the mucor, a chest xray and blood cultures to rule out infection as an additional cause of the high blood sugars and a whole host of labs. (As of this post his MRI and chest xray are unchanged from previous). Phil has a slightly enlarged liver which could be from progression of the lymphoma ~ we won't know that until he has a CT scan of his abdomen tomorrow. This could all be secondary to the Campath so it is on hold indefinitely until things settle down. The first priority is stabilizing the blood sugar and returning his metabolism to a normal state. He will have one on one nursing with an IV insulin drip and hourly blood sugar checks until his blood sugar is normalized. Each hour the sugar has been coming down and he has felt better with the fluids, well enough to eat some of Alvarado's fine fare.
Unfortunately, his platelets and hematocrit are very low and he will be getting both platelets and RBCs today. This is either a result of the Campath or from furthering disease in the marrow - a real shit show either way. Fortunately we live in an age of pharmaceuticals and transfusions so with a little tincture of time and some good nursing Phil will be feeling about 500% better than he did this morning. I plan on bugging out of here soon to get some much needed sleep for a few hours then I'll be back in the morning to see what's transpired. Lord willing, there will be a bit more breathing room.
This morning found him admitted to Alvarado Hospital's 3 South with very high blood sugars, dehydration and nausea and vomiting. The last 48 hours have been brutal to say the least and absolutely heroically endured. Phil had been struggling with nausea that barely responded to his medication, dry heaves and vomiting and the discomforts that come with blood sugars in the 400-500 range (normal being 80-120). He's had no appetite, was dry mouthed and thirsty all the time and couldn't sleep. Incidentally, every bone in his body hurts, he's stiff all over and unstable when walking too. Sheesh. Brutal, brutal brutal.
Dr. Kossman checked Phil over thoroughly this morning and ordered an MRI of Phil's head to check on the status of the mucor, a chest xray and blood cultures to rule out infection as an additional cause of the high blood sugars and a whole host of labs. (As of this post his MRI and chest xray are unchanged from previous). Phil has a slightly enlarged liver which could be from progression of the lymphoma ~ we won't know that until he has a CT scan of his abdomen tomorrow. This could all be secondary to the Campath so it is on hold indefinitely until things settle down. The first priority is stabilizing the blood sugar and returning his metabolism to a normal state. He will have one on one nursing with an IV insulin drip and hourly blood sugar checks until his blood sugar is normalized. Each hour the sugar has been coming down and he has felt better with the fluids, well enough to eat some of Alvarado's fine fare.
Unfortunately, his platelets and hematocrit are very low and he will be getting both platelets and RBCs today. This is either a result of the Campath or from furthering disease in the marrow - a real shit show either way. Fortunately we live in an age of pharmaceuticals and transfusions so with a little tincture of time and some good nursing Phil will be feeling about 500% better than he did this morning. I plan on bugging out of here soon to get some much needed sleep for a few hours then I'll be back in the morning to see what's transpired. Lord willing, there will be a bit more breathing room.
Monday, October 10, 2011
The Hardest Times
I've had some tough times in life for certain but these last few weeks have been the toughest. I thought about keeping a record of all the mini-tragedies and the macro-drama but I lost heart and lost count after awhile. Besides, after a point, what is the point? It only makes me feel like a pathetic sad-sack. Suffice it to say that a lot more shit has gone down around here since the last post. In general terms, Phil has continued to slowly deteriorate, my children and I have continue to watch it, my TO DO list grew and I became engulfed by it, and lastly I succumbed to yet another heinous migraine episode which was not ameliorated in the slightest by the Urgent Care Cocktail I'd been prescribed. I hit my wall hard and knew it was time to call in reinforcements.
Enter Tricia Reece. My best friend and the hardest working woman I know from Washington. She has loved my family for over a decade and has seen me through every major crisis. We are twin sisters from different mothers if you know what I mean and there isn't anything we wouldn't do for each other. She also happens to adore Phil and my kids and they her. She rocks. Since her arrival she's cleaned my bathrooms, steam cleaned my carpets, cooked, folded laundry, entertained my parents, doted on Phil, taken Olivia on a date and endured the puppy licking her toes. That's love. Today she's taking the kids shopping and to the beach so Phil and I can do medical appointments. Yes, she rocks. Love love love her.
Phil and I will be seeing Dr. Kossman to review the PET scan and hear about the progression of disease in his chest and pleura and hopefully Phil will get yet another thorocentesis. You know he is feeling badly when he asks for one. He has been extremely weak (as weak as I've seen him) and very short of breath. He is exhausted by taking a shower. Today is the day he is to start his new chemotherapy as well - Campath-1H, a monoclonal antibody designed to attack and kill off T-cells. It kills all T-cells so he will be very immunocompromised. It will be a big day and there will be a lot to talk about and hopefully accomplish. I have no idea how long we will be gone when we step out the door. I have no idea what we will hear when Kossman tells us about the report or what to expect from the chemo. But as ever, I do know God will be with us. I do know Tricia will be with my kids. I know we will be held in the hands of love and will be OK. I know that at the end of the day we will know more than we do now and that Phil's suffering will look different than it does now.
Enter Tricia Reece. My best friend and the hardest working woman I know from Washington. She has loved my family for over a decade and has seen me through every major crisis. We are twin sisters from different mothers if you know what I mean and there isn't anything we wouldn't do for each other. She also happens to adore Phil and my kids and they her. She rocks. Since her arrival she's cleaned my bathrooms, steam cleaned my carpets, cooked, folded laundry, entertained my parents, doted on Phil, taken Olivia on a date and endured the puppy licking her toes. That's love. Today she's taking the kids shopping and to the beach so Phil and I can do medical appointments. Yes, she rocks. Love love love her.
Phil and I will be seeing Dr. Kossman to review the PET scan and hear about the progression of disease in his chest and pleura and hopefully Phil will get yet another thorocentesis. You know he is feeling badly when he asks for one. He has been extremely weak (as weak as I've seen him) and very short of breath. He is exhausted by taking a shower. Today is the day he is to start his new chemotherapy as well - Campath-1H, a monoclonal antibody designed to attack and kill off T-cells. It kills all T-cells so he will be very immunocompromised. It will be a big day and there will be a lot to talk about and hopefully accomplish. I have no idea how long we will be gone when we step out the door. I have no idea what we will hear when Kossman tells us about the report or what to expect from the chemo. But as ever, I do know God will be with us. I do know Tricia will be with my kids. I know we will be held in the hands of love and will be OK. I know that at the end of the day we will know more than we do now and that Phil's suffering will look different than it does now.
Saturday, October 8, 2011
Ten years ago today God fulfilled our wishes for a baby. It had been over five years of grief, sorrow and barrenness and after 5 miscarriages, countless tears and unending prayers, Bennett Fischer Conrad was born. Today we are celebrating his enormous spirit, his lust for life and our deep love for him.
God answered our cries and heard our prayers then and this is the same God to whom we are calling out to today on Phil's behalf. He is faithful and hears the prayers of his people. Those were long years and they were filled with sorrow and grief. But they were also filled with times of intense blessing during which our marriage was solidified and our faith was deepened. Although understanding is sometimes hard to find in the midst of our circumstances, we trust God to be faithful, again. That doesn't mean we will receive what we want, but that God will remain with us throughout all of what comes to us.
"You give and take away. You give and take away.
My heart will choose to say, Lord blessed be your name."
God answered our cries and heard our prayers then and this is the same God to whom we are calling out to today on Phil's behalf. He is faithful and hears the prayers of his people. Those were long years and they were filled with sorrow and grief. But they were also filled with times of intense blessing during which our marriage was solidified and our faith was deepened. Although understanding is sometimes hard to find in the midst of our circumstances, we trust God to be faithful, again. That doesn't mean we will receive what we want, but that God will remain with us throughout all of what comes to us.
"You give and take away. You give and take away.
My heart will choose to say, Lord blessed be your name."
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