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.
Showing posts with label Chemo. Show all posts
Showing posts with label Chemo. Show all posts
Monday, October 17, 2011
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.
Monday, September 12, 2011
Again with the effusion?
We're back in the office again, seeing Dr. Steven Kossman this time around since his old man Charles is on photo safari in Botswana. (I just gotta say I totally dig Chuck's choice of vacation spot, by the way.) Anyway, Phil is due to start another round of chemotherapy today but he's been feeling really crappy this week. His energy has been poor and he continues to have left sided chest discomfort and a weak cough.
A chest xray was done last week which showed a small infiltrate (a haziness) in his left lung but NOT an effusion so he was started on an antibiotic to treat a possible infection. So here we are and he still feels fairly rough around the edges though he's had no fever or sweats, no chills or other signs of worsening infection. According to Phil, this deal in his chest feels just like the other two effusions he's had prior to this, one on his right side and one on his left side. As of about a month ago, his PET/CT scans and bone marrow biopsy were really good so we are a bit confused as to what might be causing this again, if indeed it is another effusion.
His blood counts and lung field exams today were mostly normal. There was some dullness on the left but not enough to stop him from receiving his treatment. The plan was to get the chemotherapy this morning then go over to the hospital for an ultrasound of the lung and tap it if it is an effusion. Otherwise, it's full steam ahead. Keep on beating on this sucker with chemo until it's fully gone.
Phil's ultrasound showed he definitely had a large left-sided pleural effusion. The radiology techs drained off more than 1 liter of fluid and Phil is much more comfortable. The fluid will be sent off again for all the usual studies, including ruling out further lymphoma involvement/advancement. It is a "paranoid" time per Phil. To be on the brink of the BMT and to have this spring up again is very frustrating and disheartening. Especially because it was the tap of his left lung that came back positive for recurrence before. Phil said today that he realizes this is a bit like a "wrestling match" and that no sooner does he get one thing pinned down then he's got another situation popping up somewhere else. There is always a new opponent it seems.
He is scheduled to fly to Atlanta late next week to spend time with his best friends and his hopeful prayer is that he is well enough to do that. Of course, wisdom and discernment about the best choice for his ultimate health is our ultimate prayer request. With the BMT option on the horizon, each decision from here on out bears very thoughtful scrutiny.
Phil is very physically tired from the successive and cumulative toll of 3 (and now a 4th round) of chemotherapy. He is run down emotionally and psychologically after more than a year of chemo/surgery and complications and now, from confronting the daunting list of things that will be required of him for the BMT. Your faithfulness, your cards, wall posts, emails and prayers are keeping us all afloat as we walk through this most difficult of journeys. We continue to rely on you more than you will adequately know. You, the unseen team we look to for strength and determination when we feel depleted. I personally have felt revitalized this week and covet the prayers said in my stead. Thanks Team~
A chest xray was done last week which showed a small infiltrate (a haziness) in his left lung but NOT an effusion so he was started on an antibiotic to treat a possible infection. So here we are and he still feels fairly rough around the edges though he's had no fever or sweats, no chills or other signs of worsening infection. According to Phil, this deal in his chest feels just like the other two effusions he's had prior to this, one on his right side and one on his left side. As of about a month ago, his PET/CT scans and bone marrow biopsy were really good so we are a bit confused as to what might be causing this again, if indeed it is another effusion.
His blood counts and lung field exams today were mostly normal. There was some dullness on the left but not enough to stop him from receiving his treatment. The plan was to get the chemotherapy this morning then go over to the hospital for an ultrasound of the lung and tap it if it is an effusion. Otherwise, it's full steam ahead. Keep on beating on this sucker with chemo until it's fully gone.
Phil's ultrasound showed he definitely had a large left-sided pleural effusion. The radiology techs drained off more than 1 liter of fluid and Phil is much more comfortable. The fluid will be sent off again for all the usual studies, including ruling out further lymphoma involvement/advancement. It is a "paranoid" time per Phil. To be on the brink of the BMT and to have this spring up again is very frustrating and disheartening. Especially because it was the tap of his left lung that came back positive for recurrence before. Phil said today that he realizes this is a bit like a "wrestling match" and that no sooner does he get one thing pinned down then he's got another situation popping up somewhere else. There is always a new opponent it seems.
He is scheduled to fly to Atlanta late next week to spend time with his best friends and his hopeful prayer is that he is well enough to do that. Of course, wisdom and discernment about the best choice for his ultimate health is our ultimate prayer request. With the BMT option on the horizon, each decision from here on out bears very thoughtful scrutiny.
Phil is very physically tired from the successive and cumulative toll of 3 (and now a 4th round) of chemotherapy. He is run down emotionally and psychologically after more than a year of chemo/surgery and complications and now, from confronting the daunting list of things that will be required of him for the BMT. Your faithfulness, your cards, wall posts, emails and prayers are keeping us all afloat as we walk through this most difficult of journeys. We continue to rely on you more than you will adequately know. You, the unseen team we look to for strength and determination when we feel depleted. I personally have felt revitalized this week and covet the prayers said in my stead. Thanks Team~
Tuesday, August 23, 2011
Phil's Latest
While I was in WA, Phil finished a second round of chemo. His mother and brother David stayed with him and saw him through the down days. He had no complications, thank you Jesus, and managed to go on some sightseeing outings with his Mom toward the end of the cycle. He is scheduled to start a third round with the nelardapine this Wednesday/Friday/Monday.
Phil had a bone marrow biopsy yesterday and it was quite the painful experience. That is actually a good thing in his case. It suggests that he has nice hard bones and not diseased lymphoma growing in there. Dr. Kossman said as much and confirmed this when he was finished with the procedure - having had to take two, not one, core sample from Phil's pelvis. OUCH. OUCH. The final pathology results will take a few days to return but from the sample Dr. Kossman took the tissue looked fine and felt like cortical bone (synonymous with compact bone, it supports the whole body, protects the organs, stores and releases chemical elements such as calcium, etc). This is exactly what we wanted to hear!!
Today Phil will be having a PET/CT scan to re-stage his cancer. The PET scan images the biology of disorders at the molecular level while the CT scan provides a detailed picture of the body's internal anatomy. Together they give pinpoint information about the cancer's activity and guide decisions regarding treatment. We want to hear that all is clear and Phil is in remission again. He will complete this third round of chemo and then...
We'll be having a conference with Kossman on that soon. Everything has changed since he relapsed and with this new chemotherapy. Once we know where he stands with the new cancer staging we'll know what comes next, what to expect for the longer term picture. Stay tuned Team Conrad and thanks for being with us this far!
Phil had a bone marrow biopsy yesterday and it was quite the painful experience. That is actually a good thing in his case. It suggests that he has nice hard bones and not diseased lymphoma growing in there. Dr. Kossman said as much and confirmed this when he was finished with the procedure - having had to take two, not one, core sample from Phil's pelvis. OUCH. OUCH. The final pathology results will take a few days to return but from the sample Dr. Kossman took the tissue looked fine and felt like cortical bone (synonymous with compact bone, it supports the whole body, protects the organs, stores and releases chemical elements such as calcium, etc). This is exactly what we wanted to hear!!
Today Phil will be having a PET/CT scan to re-stage his cancer. The PET scan images the biology of disorders at the molecular level while the CT scan provides a detailed picture of the body's internal anatomy. Together they give pinpoint information about the cancer's activity and guide decisions regarding treatment. We want to hear that all is clear and Phil is in remission again. He will complete this third round of chemo and then...
We'll be having a conference with Kossman on that soon. Everything has changed since he relapsed and with this new chemotherapy. Once we know where he stands with the new cancer staging we'll know what comes next, what to expect for the longer term picture. Stay tuned Team Conrad and thanks for being with us this far!
Tuesday, August 2, 2011
Finding Your Happy Place
Apparently 3 weeks have gone by since my last post. We've been in and out of one form of fatigue or another during this time and suffice it to say, there is a reason you haven't heard from me. Personally, I've been wandering in a desert of sorts; a desert of fatigue, migraine, emotional distress and even abject nothingness. What's more, this is a desert within me and a landscape I hardly recognize as myself. It makes me sad that cancer's fallout has taken up even an inch of real estate within me, let alone what feels like a parched acre of my soul that will forever be altered.
Tomorrow Phil starts his next round of new chemotherapy and we are thankful- that the chemo appears to be working, that he is able to actually stick to this regimen of every 3 week treatment, that he recovered quickly from the last round without any complications. But honestly, we are tired and have to remind ourselves to stop and count our blessings sometimes. I could be imagining it but it feels like it takes us days what it takes others hours to accomplish, hours what it takes others minutes. We move at a pace unlike anyone we know and share a lifestyle with no one.
I will be taking Bennett and Olivia up to Washington for a visit next week and we are all looking forward to them seeing their cousins, some classmates and to driving the old neighborhood. For me, it will be a much needed getaway but also a bit anxiety-filled. Phil will be at his lowest while I'm gone and that can be a fragile place. It is a place, by his side, that I've always been and yet he and I know that it's in my best interest to sit this one out. His mom and brother will (with Terry, Josh and my parents) be here to care for him, providing me with the respite I need as well. Time to find my happy place again.
Tomorrow Phil starts his next round of new chemotherapy and we are thankful- that the chemo appears to be working, that he is able to actually stick to this regimen of every 3 week treatment, that he recovered quickly from the last round without any complications. But honestly, we are tired and have to remind ourselves to stop and count our blessings sometimes. I could be imagining it but it feels like it takes us days what it takes others hours to accomplish, hours what it takes others minutes. We move at a pace unlike anyone we know and share a lifestyle with no one.
I will be taking Bennett and Olivia up to Washington for a visit next week and we are all looking forward to them seeing their cousins, some classmates and to driving the old neighborhood. For me, it will be a much needed getaway but also a bit anxiety-filled. Phil will be at his lowest while I'm gone and that can be a fragile place. It is a place, by his side, that I've always been and yet he and I know that it's in my best interest to sit this one out. His mom and brother will (with Terry, Josh and my parents) be here to care for him, providing me with the respite I need as well. Time to find my happy place again.
Tuesday, July 19, 2011
A Way to Live
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.
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, June 14, 2011
Familiar Surroundings
Well this feels familiar. I'm sitting in the big over-inflated chair that makes obscene noises when one sits down too quickly (those who've visited know the one) and I'm watching Phil sleep. It's day two of chemotherapy and we're in the groove. This is round 5 of what we hope will only be a total of 6 and our lives are in a bit of an upheaval. I suppose that isn't saying much for us, but really, it's true. It's crazy enough that Phil drove himself to this hospitalization yesterday and checked himself in. Truthfully, at this point he could probably get this thing rolling on his own.
Perhaps upheaval is putting too strong of a spin on things compared to where we've been before. You be the judge. As Sunday evening rolled around I had Bennett with a hideous cough, Olivia who needed to go to school the next day, Phil who had to be at the hospital at 7 a.m. the next morning and only 1 of me. Hence Phil driving himself so I could nurse Bennett and get Olivia where she needed to be.
It just so happens that we finalized plans this week to move into a new house on July 1st. Now, I need to take advantage and pack up as much as I can while Phil is in the hospital and the kids are out of the house. It is a hard fact that on Thursday at 1 p.m.( when the kids get out of school) any sense of order and control I have managed to cultivate will be in serious jeopardy. Thursday is also my father's 80th birthday and this Sunday is Father's Day. My son, if he is hale enough to participate, has a baseball game on Saturday and then there are the requisite end of school parties on Wed and Th which "we can't miss Mom!". Oh, and did I mention that my check engine light came on today? Phil 4:13, I say again, Phil 4:13.
On the plus side, Phil is doing GREAT! He is feeling well so far and is tolerating the chemotherapy as well as usual for day 2, only having a few minor twinges of nausea. I set up a MealTrain for him so we've had some lunch and dinner brought in by friends because he is literally sick of the hospital food. During the end of his last stay he became nauseated and gagged when they brought him the last few trays so we don't even bother with them anymore. Dr. Kossman was kind enough to write orders that allow him to eat outside food as long as his blood sugars stay steady and he's been doing so much better eating normal food! Tonight I believe my nephew will be bringing in Goat Cheese and Arugula Pizza. Very Nice.
Stay tuned...
Perhaps upheaval is putting too strong of a spin on things compared to where we've been before. You be the judge. As Sunday evening rolled around I had Bennett with a hideous cough, Olivia who needed to go to school the next day, Phil who had to be at the hospital at 7 a.m. the next morning and only 1 of me. Hence Phil driving himself so I could nurse Bennett and get Olivia where she needed to be.
It just so happens that we finalized plans this week to move into a new house on July 1st. Now, I need to take advantage and pack up as much as I can while Phil is in the hospital and the kids are out of the house. It is a hard fact that on Thursday at 1 p.m.( when the kids get out of school) any sense of order and control I have managed to cultivate will be in serious jeopardy. Thursday is also my father's 80th birthday and this Sunday is Father's Day. My son, if he is hale enough to participate, has a baseball game on Saturday and then there are the requisite end of school parties on Wed and Th which "we can't miss Mom!". Oh, and did I mention that my check engine light came on today? Phil 4:13, I say again, Phil 4:13.
On the plus side, Phil is doing GREAT! He is feeling well so far and is tolerating the chemotherapy as well as usual for day 2, only having a few minor twinges of nausea. I set up a MealTrain for him so we've had some lunch and dinner brought in by friends because he is literally sick of the hospital food. During the end of his last stay he became nauseated and gagged when they brought him the last few trays so we don't even bother with them anymore. Dr. Kossman was kind enough to write orders that allow him to eat outside food as long as his blood sugars stay steady and he's been doing so much better eating normal food! Tonight I believe my nephew will be bringing in Goat Cheese and Arugula Pizza. Very Nice.
Stay tuned...
Wednesday, May 4, 2011
A Time To Be Silent and A Time To Speak
When I was in grade school my report cards frequently came back to my parents with little comments like "talking in class is a problem", or "quite the social butterfly". And I remember my parents always telling the story of our family going camping and me wandering off to the nearby campsites "making friends" while they looked around trying to find where I'd gone. In fact, being in a family of six children, I'd say I grew up with A LOT of talking. I distinctly remember a lot of talking at the dinner table and loud board games and even louder pool parties. Seems there was always something to say and someone to say it.
Now, I crave my quiet time. My son woke up the other night, disturbed in his sleep by the incessant singing of a mockingbird right outside his window at 3 a.m. He was so exhausted and miserable that he sought refuge in our bed far from "the noise". For me, it was so much quieter than the noise of details and anxiety vying for attention in my head that I found it soothing and beautiful and it quickly had me back to sleep (in our cramped quarters no less).
I do find it interesting now, as the spouse of someone with cancer, as someone who spends a lot of time in the hospital, how quiet I have become. I realize how quiet I've become when I haven't blogged for awhile. It seems deafening, the quiet. I haven't totally figured it out yet - why I stay silent, sitting on the newest of information about Phil. My little book of notes is just sitting on my bedside table, waiting to be turned into a post. I am fully aware that I am the conduit, the gatekeeper of sorts for the friends and loved ones waiting to hear about Phil's latest turn of events. I am fully aware but remain silent. It's strange how at times, when he is in crisis, I can't blog fast enough - sometimes posting every day. At other times, a week or more will go by. Clearly there is some anxiety management underway.
For starters, I think staying quiet is both a way to stop the process from moving forward for a while (so to speak). To keep it on the page, closed up in my book of notes. It is a very primitive form of control. OK, I've heard the latest, taken that bite and chewed it up. Now I just close the book on it, literally and wait until the next appointment and THEN I'll open up the book again ~ as if nothing can happen as long as I don't open up that book, or speak about it. Very wishful, magical thinking. Well, on with the latest in reality then....
Phil's pleural effusion was tapped (drained) last week and 550cc was removed. That's half of a liter, as in half of a huge Coke bottle worth of fluid. A LOT! It was mostly old blood and WBCs and the overall results were Good but Confusing. When Phil was neutropenic (had no WBCs) something in his pleural space caused a lot of inflammation/irritation. He was also thrombocytopenic (low platelets) and couldn't clot off bleeding from the irritation hence the blood in his pleural space. When he was given Neulasta to stimulate WBCs he made a lot of them and they rushed to his pleural space too. They also gave him lots of IV antibiotics to cover the possibility of infection.
There were no signs of bacteria, fungus, Mucor, malignant cells, or lymphoma in his effusion and the cultures are not growing anything either. There is nothing that looks like an active infection. The confusing part is what caused the effusion in the first place. He could have had an infection that cleared with the IV antibiotics in the hospital and since there still isn't anything growing in the cultures, we may never know. So, he sits tight and waits to see how he recovers. There is no treatment prescribed and he waits on some longer term tests like TB, and fungal cultures. Fortunately, he is feeling better every day.
NOW THE BIG QUESTION? WHEN TO TREAT WITH MORE CHEMOTHERAPY?
Practically, Dr. Kossman would like to treat Phil in 3 weeks.
Philosophically, not knowing what is going on in his lungs, whether that is a resolving infectious process or what, he doesn't want to just bottom Phil out again right away. Plus, as he said to him last time, "I've almost killed you now three or four times". He wants to give Phil time to recover just enough to take him (and whatever residual lymphoma may be there) back down hard. For now, Kossman will wait until Phil returns from his father's memorial service in early June to start the next round, #5 of a probable 6-8.
And that brings me to the most interesting part of our discussion. Do you know why Phil gets more chemo, even though his bone marrow is "normal", his chest mass is "gone" and he is in "remission"? Here's how Dr. Kossman explained it.
CHEMOTHERAPY 101
Say you have a 1 cm mass, like a lymph node. That = 1 Billion cancer cells.
Take enough chemotherapy to kill all of the cancer cells but the size of a pencil dot or the period at the end of this sentence.
That would leave you with 1% of 1 billion cells which would = 10 MILLION CANCER CELLS left.
That is why cancer is a fucker if you don't mind my saying so. Not going to stay silent on that one.
Now, I crave my quiet time. My son woke up the other night, disturbed in his sleep by the incessant singing of a mockingbird right outside his window at 3 a.m. He was so exhausted and miserable that he sought refuge in our bed far from "the noise". For me, it was so much quieter than the noise of details and anxiety vying for attention in my head that I found it soothing and beautiful and it quickly had me back to sleep (in our cramped quarters no less).
I do find it interesting now, as the spouse of someone with cancer, as someone who spends a lot of time in the hospital, how quiet I have become. I realize how quiet I've become when I haven't blogged for awhile. It seems deafening, the quiet. I haven't totally figured it out yet - why I stay silent, sitting on the newest of information about Phil. My little book of notes is just sitting on my bedside table, waiting to be turned into a post. I am fully aware that I am the conduit, the gatekeeper of sorts for the friends and loved ones waiting to hear about Phil's latest turn of events. I am fully aware but remain silent. It's strange how at times, when he is in crisis, I can't blog fast enough - sometimes posting every day. At other times, a week or more will go by. Clearly there is some anxiety management underway.
For starters, I think staying quiet is both a way to stop the process from moving forward for a while (so to speak). To keep it on the page, closed up in my book of notes. It is a very primitive form of control. OK, I've heard the latest, taken that bite and chewed it up. Now I just close the book on it, literally and wait until the next appointment and THEN I'll open up the book again ~ as if nothing can happen as long as I don't open up that book, or speak about it. Very wishful, magical thinking. Well, on with the latest in reality then....
Phil's pleural effusion was tapped (drained) last week and 550cc was removed. That's half of a liter, as in half of a huge Coke bottle worth of fluid. A LOT! It was mostly old blood and WBCs and the overall results were Good but Confusing. When Phil was neutropenic (had no WBCs) something in his pleural space caused a lot of inflammation/irritation. He was also thrombocytopenic (low platelets) and couldn't clot off bleeding from the irritation hence the blood in his pleural space. When he was given Neulasta to stimulate WBCs he made a lot of them and they rushed to his pleural space too. They also gave him lots of IV antibiotics to cover the possibility of infection.
There were no signs of bacteria, fungus, Mucor, malignant cells, or lymphoma in his effusion and the cultures are not growing anything either. There is nothing that looks like an active infection. The confusing part is what caused the effusion in the first place. He could have had an infection that cleared with the IV antibiotics in the hospital and since there still isn't anything growing in the cultures, we may never know. So, he sits tight and waits to see how he recovers. There is no treatment prescribed and he waits on some longer term tests like TB, and fungal cultures. Fortunately, he is feeling better every day.
NOW THE BIG QUESTION? WHEN TO TREAT WITH MORE CHEMOTHERAPY?
Practically, Dr. Kossman would like to treat Phil in 3 weeks.
Philosophically, not knowing what is going on in his lungs, whether that is a resolving infectious process or what, he doesn't want to just bottom Phil out again right away. Plus, as he said to him last time, "I've almost killed you now three or four times". He wants to give Phil time to recover just enough to take him (and whatever residual lymphoma may be there) back down hard. For now, Kossman will wait until Phil returns from his father's memorial service in early June to start the next round, #5 of a probable 6-8.
And that brings me to the most interesting part of our discussion. Do you know why Phil gets more chemo, even though his bone marrow is "normal", his chest mass is "gone" and he is in "remission"? Here's how Dr. Kossman explained it.
CHEMOTHERAPY 101
Say you have a 1 cm mass, like a lymph node. That = 1 Billion cancer cells.
Take enough chemotherapy to kill all of the cancer cells but the size of a pencil dot or the period at the end of this sentence.
That would leave you with 1% of 1 billion cells which would = 10 MILLION CANCER CELLS left.
That is why cancer is a fucker if you don't mind my saying so. Not going to stay silent on that one.
Friday, April 1, 2011
Another Long Day
What a long day yesterday was - for Phil I mean. I actually faired well up until the end of the evening which I'll get into later. Mostly I kept Phil company while we waited to hear the results of the tests he went through. With the fever he had in the night the initial work up included the obligatory urine and blood cultures, a chest x-ray, and an MRI of the sinuses and brain. About midway through the day Dr. Mayer (Infectious Disease) came in for a bedside consult and Dr. Mansfield (Oncology ENT) had us wheel on over (literally) to his office across the street so he could look in Phil's sinuses with his sophisticated equipment.
During morning rounds with Dr. Kossman Phil mentioned that he'd started having a cough and a pain in the middle of his chest when he took a deep breath. It was sharp and very painful. Dr. Kossman didn't hear anything in the lung fields and wanted to see the chest xray results. He thought it could be an irritation to the pleura (lining of the lung) from the methotrexate and wanted to keep an eye on it through the day.
By 5 p.m. everything was looking fantastic and we'd confirmed that there was nothing growing in any of his cultures, his chest x-ray was totally clear, his MRI was awesome - no signs of any active processes and the Mucor and previous infections were completely resolved. Dr. Mansfield had taken a look at the sinuses and down Phil's throat and declared everything there to look great with no signs of active infection. So, while this was all really great news, we still had no culprit for the source of the fever.
During the consults with both Dr's. Mayer and Mansfield Phil mentioned the chest pain. While neither heard any abnormal lung sounds, both were concerned about the pain as well and the need to rule out a more significant cause like a pulmonary embolism (a blood clot in the lung - potentially life threatening). As we got back to Phil's room he was suddenly in so much pain he couldn't sit still and starting to have difficulty breathing deeply. He called for morphine and finally settled down. At this point the phone rang and it was Dr. Kossman, ordering a spiral CT scan to rule out the pulmonary embolism. Now Phil has azotemia (a type of decreased kidney function) and the CT scan requires a dye which is excreted by the kidneys. To make a long story short, there is risk to his kidneys of further worsening function so he'll be getting a LOT of fluids through the night to flush them to minimize this risk. Between the pain and the fluids the poor guy may not be sleeping much tonight if you know what I mean...
Fortunately spiral CT scans only take about 10 minutes to do and we had the results quickly. There was no pulmonary embolism and we were able to learn that the 13 cm mass of lymphoma tissue that was initially in his chest at diagnosis is gone; it is now <1cm of scarred tissue. In other words, Dr. Kossman says it is "essentially nothing". Well that was worth the risk to find out I'd say! So, again, we're back to thinking that Phil probably has a viral respiratory infection or a pleuritic irritation from the chemotherapy. Morphine is the treatment, to keep him comfortable until there are signs pointing to another diagnosis or way to manage it.
I said I did well until the evening. When I was getting ready to go for the night Phil started to have more chest pain and was really hurting. We called the nurse and got him the morphine but it took so long for him to get comfortable. There was nothing I could do to make it better. I just had to wait it out with him until the relief came. And it took at least 20 minutes. That was a long time. Finally he felt comfortable enough that I felt comfortable enough to go home to the kids. What a bugger.
During morning rounds with Dr. Kossman Phil mentioned that he'd started having a cough and a pain in the middle of his chest when he took a deep breath. It was sharp and very painful. Dr. Kossman didn't hear anything in the lung fields and wanted to see the chest xray results. He thought it could be an irritation to the pleura (lining of the lung) from the methotrexate and wanted to keep an eye on it through the day.
By 5 p.m. everything was looking fantastic and we'd confirmed that there was nothing growing in any of his cultures, his chest x-ray was totally clear, his MRI was awesome - no signs of any active processes and the Mucor and previous infections were completely resolved. Dr. Mansfield had taken a look at the sinuses and down Phil's throat and declared everything there to look great with no signs of active infection. So, while this was all really great news, we still had no culprit for the source of the fever.
During the consults with both Dr's. Mayer and Mansfield Phil mentioned the chest pain. While neither heard any abnormal lung sounds, both were concerned about the pain as well and the need to rule out a more significant cause like a pulmonary embolism (a blood clot in the lung - potentially life threatening). As we got back to Phil's room he was suddenly in so much pain he couldn't sit still and starting to have difficulty breathing deeply. He called for morphine and finally settled down. At this point the phone rang and it was Dr. Kossman, ordering a spiral CT scan to rule out the pulmonary embolism. Now Phil has azotemia (a type of decreased kidney function) and the CT scan requires a dye which is excreted by the kidneys. To make a long story short, there is risk to his kidneys of further worsening function so he'll be getting a LOT of fluids through the night to flush them to minimize this risk. Between the pain and the fluids the poor guy may not be sleeping much tonight if you know what I mean...
Fortunately spiral CT scans only take about 10 minutes to do and we had the results quickly. There was no pulmonary embolism and we were able to learn that the 13 cm mass of lymphoma tissue that was initially in his chest at diagnosis is gone; it is now <1cm of scarred tissue. In other words, Dr. Kossman says it is "essentially nothing". Well that was worth the risk to find out I'd say! So, again, we're back to thinking that Phil probably has a viral respiratory infection or a pleuritic irritation from the chemotherapy. Morphine is the treatment, to keep him comfortable until there are signs pointing to another diagnosis or way to manage it.
I said I did well until the evening. When I was getting ready to go for the night Phil started to have more chest pain and was really hurting. We called the nurse and got him the morphine but it took so long for him to get comfortable. There was nothing I could do to make it better. I just had to wait it out with him until the relief came. And it took at least 20 minutes. That was a long time. Finally he felt comfortable enough that I felt comfortable enough to go home to the kids. What a bugger.
Tuesday, March 8, 2011
Chill Pill
With all the prescriptions and medications Phil has been given, this may be the hardest pill he's had to swallow. Waiting.
He's been asked to wait at least 3 weeks to start his next round of chemotherapy. He was supposed to start today in fact, but his sinuses just aren't ready for this regimen's portion of chemo, methotrexate and ARA-C. Dr. Mansfield examined Phil last week and found too much swelling and infectious residue to sign off on treatment at this point and asked him and Dr. Kossman to wait at least 2 weeks. The 3 week point was chosen because Mansfield won't be back in town until then and we all want him around in case anything goes south during treatment. Having been around this block a few times we've learned it's a good thing to have the best people in place, just in case. So, 3 weeks it will be.
Now you might think that Phil would be singularly happy about having 3 weeks to take a break and have a breather. I would have thought so too. To be perfectly transparent, since it means that I get a break as well, I am totally fine with it, but he's not thrilled. But before I go questioning him I have to remember that I'm not the one with cancer in my body - in my bones and in my blood. He's got the ever present reminder within him and despite his fatigue and the rigors, wounds and inconveniences of battle, most days he just wants to get on with it and see it to the finish. His lives a dichotomous life right now, desperately needing to rest and replenish in order to live, yet wanting to take the fight to the disease (within himself) which knows no rest.
So, is there really ever any rest for him? For his mind or his spirit? Maybe for the body there is when he's laid up or recovering from surgery. But what about his mind? What happens when one let's up in there, or in one's spirit? I don't really know, having never fought for my life. I do know that Phil, despite recovering a herculean amount of strength and stamina, is still often profoundly fatigued and the reason isn't always clear.
Today we have his brother Jamie and family coming to visit and "the buddy's" from high school, Brad Bruckman, Tim Spence, Jim Kramer and Jon McCauley are coming in another week. God doesn't makes mistakes and since His timing is perfect I can't wait to see what will happen for Phil during this time. It makes perfect sense for him to relax and really enjoy this time with them. The sinuses will heal, I don't have any concerns about that. But we all need a breather, all of us. Whether we know how to handle it or whether we welcome it, it's here. I for one have so much to do and get caught up on that having friends and family here could streamline that. I'm looking forward to fresh faces around, to stories and laughter. I can't wait for the inevitable falling in love that my kids do with Dad's friends and vice-versa. And I really look forward to Phil forgetting for a while that he's sick. That's what this waiting could be all about and that would be just fine.
He's been asked to wait at least 3 weeks to start his next round of chemotherapy. He was supposed to start today in fact, but his sinuses just aren't ready for this regimen's portion of chemo, methotrexate and ARA-C. Dr. Mansfield examined Phil last week and found too much swelling and infectious residue to sign off on treatment at this point and asked him and Dr. Kossman to wait at least 2 weeks. The 3 week point was chosen because Mansfield won't be back in town until then and we all want him around in case anything goes south during treatment. Having been around this block a few times we've learned it's a good thing to have the best people in place, just in case. So, 3 weeks it will be.
Now you might think that Phil would be singularly happy about having 3 weeks to take a break and have a breather. I would have thought so too. To be perfectly transparent, since it means that I get a break as well, I am totally fine with it, but he's not thrilled. But before I go questioning him I have to remember that I'm not the one with cancer in my body - in my bones and in my blood. He's got the ever present reminder within him and despite his fatigue and the rigors, wounds and inconveniences of battle, most days he just wants to get on with it and see it to the finish. His lives a dichotomous life right now, desperately needing to rest and replenish in order to live, yet wanting to take the fight to the disease (within himself) which knows no rest.
So, is there really ever any rest for him? For his mind or his spirit? Maybe for the body there is when he's laid up or recovering from surgery. But what about his mind? What happens when one let's up in there, or in one's spirit? I don't really know, having never fought for my life. I do know that Phil, despite recovering a herculean amount of strength and stamina, is still often profoundly fatigued and the reason isn't always clear.
Today we have his brother Jamie and family coming to visit and "the buddy's" from high school, Brad Bruckman, Tim Spence, Jim Kramer and Jon McCauley are coming in another week. God doesn't makes mistakes and since His timing is perfect I can't wait to see what will happen for Phil during this time. It makes perfect sense for him to relax and really enjoy this time with them. The sinuses will heal, I don't have any concerns about that. But we all need a breather, all of us. Whether we know how to handle it or whether we welcome it, it's here. I for one have so much to do and get caught up on that having friends and family here could streamline that. I'm looking forward to fresh faces around, to stories and laughter. I can't wait for the inevitable falling in love that my kids do with Dad's friends and vice-versa. And I really look forward to Phil forgetting for a while that he's sick. That's what this waiting could be all about and that would be just fine.
Friday, February 18, 2011
It is What It Is
We're home now, having been discharged on Wednesday after receiving Dr. Mansfield's blessing that Phil had been given a sufficient amount of IV antibiotics and Dr. Kossman felt his blood counts were returning to normal levels. He left on oral antibiotics and a host of other medications to tame the sinus infection while his immune system comes back online and finally conquers it once and for all (knocking on wood would be appropriate right now if you are at all superstitious).
Normally, coming home would mean a wonderful rest from the hustle and bustle of hospital life where someone or another is always coming into Phil's room to measure, administer, deliver, or clean something. But no. Cancer, being the tenacious SOB that it is, has continued to flex it's muscle and is alternately pissing Phil off or exhausting him with profound nausea. In addition to these bouts he has also been taken to the mat with sleeplessness and a ferocious fatigue that compounds with each passing day. There has truly been no rest for the weary. And by weary I mean: chemotherapy for 4 days followed by 9 days of the bottom totally dropping out followed by admission for pancytopenia and sepsis including sinus surgery and a 6 day stay at "Club Med". Makes most anything I am dealing with alongside of him much more tolerable. Not easy, but tolerable.
I just began reading The Emperor of all Maladies: a Biography of Cancer. It is absolutely fascinating so far and I know I will be riveted by it. I know because it is the story of a "relentless and insidious enemy" and because it is the story I am living every day. You might wonder why I would choose to read such a book right now. You might wonder if I'll find it too depressing, or too difficult to handle. On the contrary. In taking a hard look in the mirror of reality I find nothing more affirming than seeing things exactly as they are and leaning into them. It is what it is - and yes it SUCKS!, yes it is a RIP OFF! of epic proportions that my husband, my children's father has this most aggressive and "relentless and insidious enemy", cancer. But to pretend otherwise or to distance myself from this process or reality would be to deny Phil and myself the opportunity and privilege of growing in intimacy with each other, our children and with God in this most heinous, desperate and yet profound situation.
Through relationships with the doctors, my close friends and family and mostly with Phil and my kids I am reaping many harvests of joy amidst this trial. I definitely have to keep my eyes open for them sometimes but they are there. People and relationships are an endless wellspring of love and discovery. And when all that cancer is serving up is nausea, hair loss, fatigue and sleeplessness, well, give me the wellspring, thank you very much! (Take me to the river, drop me in the water...) So even though there is suffering and that is what it is a lot of the time lately, that's OK. We signed up for the package deal with each other, with our friendships, and with God.
Through relationships with the doctors, my close friends and family and mostly with Phil and my kids I am reaping many harvests of joy amidst this trial. I definitely have to keep my eyes open for them sometimes but they are there. People and relationships are an endless wellspring of love and discovery. And when all that cancer is serving up is nausea, hair loss, fatigue and sleeplessness, well, give me the wellspring, thank you very much! (Take me to the river, drop me in the water...) So even though there is suffering and that is what it is a lot of the time lately, that's OK. We signed up for the package deal with each other, with our friendships, and with God.
People travel to wonder at the height of mountains, at the huge waves of the sea, at the long courses of rivers, at the vast compass of the ocean, at the circular motion of the stars; and they pass by themselves without wondering. -- St. Augustine
Friday, February 11, 2011
Low Blood
I know I shouldn't be but I am. Surprised, that is, by how quickly things can change. I really should know better by now.
Yesterday, after several up and down days of feeling puny and struggling with nausea and vomiting, Phil woke up from a great night of sleep and felt like he had turned a corner. He walked out of the bedroom smiling and was able to advance his diet from ice chips to tea, broth, and frozen yogurt all in the span of an afternoon. For the first time in days his temp was stone cold normal and he had what resembled energy. He helped me put in some laundry, did a bit of homework with the kids and even got Olivia's bike out of a predicament in the garage. May not sound like much but for us this is a cause celebre.
He was well enough in fact that it felt safe for me to take Bennett to baseball practice for an hour or so and leave him by himself. Once I got home however, the surprise factor showed up. It was now after 7 p.m. and he hadn't eaten anything yet and had no appetite. His stomach wasn't quite right either. I took his temperature and low and behold, 101.5! A call to our faithful Dr. Kossman bought us a fast track ticket to the ER.
At this point in Phil's chemo cycle he is on day 10, right at bottom out time. The counts should be down at their lowest and he should be circling the drain so to speak. A drastically low WBC count is just what Kossman had been trying to avoid with the Neulasta - the WBC booster he gave Phil just prior to discharge at the end of chemo. The hope was that it would boost his production and help maintain some immune function. However, once again Phil's system has responded to the chemotherapy perfectly - unfortunately.
He is now pancytopenic ~ low across the board in terms of blood cell lines. He is dangerously low on platelets, RBCs, and WBCs and because of the fever he is presumed septic (infected in his bloodstream) until proven otherwise. His blood sugar is also very high secondary to the infectious process and needs to be in tight control lest the mucor take off again. By now you won't be surprised either to hear that he was admitted for lots of supportive care. Fortunately for him, he is in no pain and doesn't feel sick. He just wants to sleep in his own bed.
As of last night when I finally left his room on 3 South he had received 2 antibiotics to cover him for infection, Neulasta for WBC production and was being prepped to receive platelets overnight. This morning he will be transfused with 3 units of RBCs, take his Ambisome antifungal, continue the antibiotics and will be awaiting the preliminary results of blood cultures taken in the ER. An MRI of the brain will likely happen in the next day or so.
Leaving Phil's room to go home last night was hard for me. As always I felt torn between staying to support him, getting enough sleep to take care of myself, and being available to the kids today (the 100th day of school celebration and their Valentine's parties). Phil saw the tears in my eyes and told me to go. I know he would have liked me to stay but after all we've been through with this cancer he knows 1) the kids need their Mom 2) if I don't take care of myself then nobody will and 3) there is unfortunately, more of this to come. Telling me to go home was a gift from my Iron Man. My love for him grew last night and made us and our family stronger for dealing with this F-ing disease.
Yesterday, after several up and down days of feeling puny and struggling with nausea and vomiting, Phil woke up from a great night of sleep and felt like he had turned a corner. He walked out of the bedroom smiling and was able to advance his diet from ice chips to tea, broth, and frozen yogurt all in the span of an afternoon. For the first time in days his temp was stone cold normal and he had what resembled energy. He helped me put in some laundry, did a bit of homework with the kids and even got Olivia's bike out of a predicament in the garage. May not sound like much but for us this is a cause celebre.
He was well enough in fact that it felt safe for me to take Bennett to baseball practice for an hour or so and leave him by himself. Once I got home however, the surprise factor showed up. It was now after 7 p.m. and he hadn't eaten anything yet and had no appetite. His stomach wasn't quite right either. I took his temperature and low and behold, 101.5! A call to our faithful Dr. Kossman bought us a fast track ticket to the ER.
At this point in Phil's chemo cycle he is on day 10, right at bottom out time. The counts should be down at their lowest and he should be circling the drain so to speak. A drastically low WBC count is just what Kossman had been trying to avoid with the Neulasta - the WBC booster he gave Phil just prior to discharge at the end of chemo. The hope was that it would boost his production and help maintain some immune function. However, once again Phil's system has responded to the chemotherapy perfectly - unfortunately.
He is now pancytopenic ~ low across the board in terms of blood cell lines. He is dangerously low on platelets, RBCs, and WBCs and because of the fever he is presumed septic (infected in his bloodstream) until proven otherwise. His blood sugar is also very high secondary to the infectious process and needs to be in tight control lest the mucor take off again. By now you won't be surprised either to hear that he was admitted for lots of supportive care. Fortunately for him, he is in no pain and doesn't feel sick. He just wants to sleep in his own bed.
As of last night when I finally left his room on 3 South he had received 2 antibiotics to cover him for infection, Neulasta for WBC production and was being prepped to receive platelets overnight. This morning he will be transfused with 3 units of RBCs, take his Ambisome antifungal, continue the antibiotics and will be awaiting the preliminary results of blood cultures taken in the ER. An MRI of the brain will likely happen in the next day or so.
Leaving Phil's room to go home last night was hard for me. As always I felt torn between staying to support him, getting enough sleep to take care of myself, and being available to the kids today (the 100th day of school celebration and their Valentine's parties). Phil saw the tears in my eyes and told me to go. I know he would have liked me to stay but after all we've been through with this cancer he knows 1) the kids need their Mom 2) if I don't take care of myself then nobody will and 3) there is unfortunately, more of this to come. Telling me to go home was a gift from my Iron Man. My love for him grew last night and made us and our family stronger for dealing with this F-ing disease.
Sunday, February 6, 2011
Super Bowl Weekend ~ Conrad Style
Wouldn't you know it. Yesterday, the day before the "Big Game" (the one in which the Steelers beat the snot out of Green Bay while Phil waves his Terrible Towel and yells like a mad man) he woke up feeling horrible ~ nauseous and wrung out. By midday he had thrown up and by the evening he'd only put a glass of water, a grape Popsicle and a few ice chips into his system. Despite world-class care and a lot of thought put into anticipating what might happen this time around, things just weren't going smoothly post-chemotherapy for Phil ~ again! His fluid intake just wasn't gonna get it done so I had to pack him off to the ER for IV hydration and better anti-nausea meds.
Alas, the great folks at Alvarado did an amazing job for us once again. Dr. Kai Zu was fantastic as our on-call doctor and gave us several excellent options to think through before we chose to head out to the ER. As I've mentioned before, at this point in Phil's journey he is something of a celebrity and when Dr. Zu called he already knew the high points of Phil's case. Until you've walked this long road you won't know what a gift that is. I was spared from having to repeat Phil's entire medical history and because we are now both known entities, I didn't have to qualify my judgment of the situation from a medical perspective either. This is truly priceless, especially when one's husband is teetering on the brink of literal existential nausea.
Once in the ER we saw our nurse Joanne from 3 months ago when Phil came in with his horrendous spinal headache. We remembered one another and she reminded us with a wink that we weren't supposed to come back to her ER ever again. Oops. She cared for both of us with the same warmth and commitment as before and we were made to feel as if were her most important patients of the night, made to feel like family. When she told us of her desire to become a Nurse Practitioner, Phil, like usual, was quick to encourage and compliment her even though he continued to struggle with uncontrolled nausea as he did so.
Fortunately, his labs were all normal except for some dehydration and his problem was just that ~ being a quart low on fluids. After 2L of normal saline and some Kytril for nausea he started to look better even though the nausea would hang on for the rest of the night. We eventually made it home after only 4 hours there and were home in bed by 11:00 p.m. That's got to be some kind of record for a complicated chemotherapy patient with dehydration, nausea and vomiting! Good work Alvarado ER is all I got to say.
Thanks to all of you who followed my posts on Facebook last night and were praying. This morning finds Phil slowly gaining ground. He started with ice chips and has progressed to Popsicles. Later we've got Top Ramen on the bill of fare. Good times ahead for this unforgettable Super Bowl Sunday I can assure you. At this point, I would be remiss if I failed to mention that his first act this morning was to change into his Pittsburgh Steelers 2010 AFC National Champions T-Shirt. There's plenty of fight left in the old boy yet!
Alas, the great folks at Alvarado did an amazing job for us once again. Dr. Kai Zu was fantastic as our on-call doctor and gave us several excellent options to think through before we chose to head out to the ER. As I've mentioned before, at this point in Phil's journey he is something of a celebrity and when Dr. Zu called he already knew the high points of Phil's case. Until you've walked this long road you won't know what a gift that is. I was spared from having to repeat Phil's entire medical history and because we are now both known entities, I didn't have to qualify my judgment of the situation from a medical perspective either. This is truly priceless, especially when one's husband is teetering on the brink of literal existential nausea.
Once in the ER we saw our nurse Joanne from 3 months ago when Phil came in with his horrendous spinal headache. We remembered one another and she reminded us with a wink that we weren't supposed to come back to her ER ever again. Oops. She cared for both of us with the same warmth and commitment as before and we were made to feel as if were her most important patients of the night, made to feel like family. When she told us of her desire to become a Nurse Practitioner, Phil, like usual, was quick to encourage and compliment her even though he continued to struggle with uncontrolled nausea as he did so.
Fortunately, his labs were all normal except for some dehydration and his problem was just that ~ being a quart low on fluids. After 2L of normal saline and some Kytril for nausea he started to look better even though the nausea would hang on for the rest of the night. We eventually made it home after only 4 hours there and were home in bed by 11:00 p.m. That's got to be some kind of record for a complicated chemotherapy patient with dehydration, nausea and vomiting! Good work Alvarado ER is all I got to say.
Thanks to all of you who followed my posts on Facebook last night and were praying. This morning finds Phil slowly gaining ground. He started with ice chips and has progressed to Popsicles. Later we've got Top Ramen on the bill of fare. Good times ahead for this unforgettable Super Bowl Sunday I can assure you. At this point, I would be remiss if I failed to mention that his first act this morning was to change into his Pittsburgh Steelers 2010 AFC National Champions T-Shirt. There's plenty of fight left in the old boy yet!
Wednesday, February 2, 2011
Blessed Boredom
So far so good. It's day 3 around here and the boredom has set in. Actually it kinda set in early on day 1 but Phil is a champ and doesn't complain. The chemotherapy has been uneventful and the hospital stay has been like going to visit old friends ~ everyone has commented on how great Phil looks, has gushed about his recovery and has been waiting for me to bring the kids around.
Phil's tolerated the adjustments in his regimen really well and other than feeling a little tired he's not had any real side effects of note. He is not having any intrathecal chemo so he won't be getting any spinal taps (thank God) and won't have to contend with those potentially nasty sequelae. Tomorrow he'll receive adriamycin (the "red devil") which will eventually make his hair fall out but until then things should be pretty benign.
Dr. Kossman gave him the freedom to manage his diabetes which means he can give himself insulin, check his blood sugars and eat what he wants from the outside world in addition to the "gourmet" meals they offer him from Chez Cafeteria. Just last night we dined on nephew Josh's homemade 1/2 margerite 1/2 goat cheese and arugula pizza. Phil's got himself a stash of salt and pepper krinkle cut chips, too ; )! Why is he getting such special privileges you ask? Currently, he's sporting a Hgb A1C of 5.65 (a measure of his blood sugar control over the last few months) which is KICK-ASS!
So, when he isn't lying in bed eating pizza, basking in the glow of the admiring staff, taking naps or watching The Pacific on DVD, he is dealing with some boredom. But to a one, we are all thankful for the boredom this time around compared to the alternative and the roller coaster of last time. We know there is a big drop off coming when his energy will be depleted and the washout will hit. Today is day 3 and that's coming on about day 8 or 9. We're taking it a day at a time and this feels pretty nice. Think we'll all just enjoy it for now.
Phil's tolerated the adjustments in his regimen really well and other than feeling a little tired he's not had any real side effects of note. He is not having any intrathecal chemo so he won't be getting any spinal taps (thank God) and won't have to contend with those potentially nasty sequelae. Tomorrow he'll receive adriamycin (the "red devil") which will eventually make his hair fall out but until then things should be pretty benign.
Dr. Kossman gave him the freedom to manage his diabetes which means he can give himself insulin, check his blood sugars and eat what he wants from the outside world in addition to the "gourmet" meals they offer him from Chez Cafeteria. Just last night we dined on nephew Josh's homemade 1/2 margerite 1/2 goat cheese and arugula pizza. Phil's got himself a stash of salt and pepper krinkle cut chips, too ; )! Why is he getting such special privileges you ask? Currently, he's sporting a Hgb A1C of 5.65 (a measure of his blood sugar control over the last few months) which is KICK-ASS!
So, when he isn't lying in bed eating pizza, basking in the glow of the admiring staff, taking naps or watching The Pacific on DVD, he is dealing with some boredom. But to a one, we are all thankful for the boredom this time around compared to the alternative and the roller coaster of last time. We know there is a big drop off coming when his energy will be depleted and the washout will hit. Today is day 3 and that's coming on about day 8 or 9. We're taking it a day at a time and this feels pretty nice. Think we'll all just enjoy it for now.
Monday, January 31, 2011
Chapter 2: And So It Begins
Well, here we are again, at Alvarado Hospital on 3 South, such familiar surroundings. With the non-descript wallpaper, the tile floors, the blue bedspread, the smell of hand sanitizer, the pump humming along in the background as it delivers the meds, and the same lame-o food. Thankfully, we also have the same friendly and welcoming nurses and staff. Abby our nurse for today was also our nurse the first day Phil started chemo way back in August, so it is with a bit of deja vu that we begin Chapter Two.
It's been three months since I was last here; me and many more of us, holding vigil and praying that Phil would survive the surgeries and complications that attended his first full round of chemotherapy. What a difference time makes and what a testament to the power of prayer he is just walking in here again. Although Phil says he never felt like he was going to die, there was ample testimony given us by his doctors regarding that very possibility that it is nothing short of a miracle that he is with us and has returned to his current state of fitness.
There are things that feel very familiar to me about this first day of chemo ~ the getting up early to be admitted, the whole intake process and paperwork, the changing of Phil's port access lines and the starting of fluids before the big guns of chemo start. The many heads popping in the door to check in on things. The fashionable attire. And, just like last time, the "canoodling" in his oh-so-comfy hospital bed, napping off and on while everything was mixed up and made ready down in the pharmacy.
What is different this time is my perspective. The first time around I was shell shocked and reeling from the pace and seriousness our lives had suddenly taken on. We had just left our lives behind in Washington and though my family was here, there was barely a foundation under our feet to stand on yet. We thought we knew what to expect from chemotherapy so we hoped for the best. We were very well informed and educated and we were prayerful. But as you know, things went awry and the complications began and continued to pile up. The reeling continued and didn't abate for me for about 5 months, until right around Christmas.
And now here I am again. It is difficult to fully put into words what I feel today because I am still coming to understand what I have been through these last months. Suffice it to say I feel a mild sense of apprehension mixed with relief that we are moving forward again in treating the lymphoma. This time I know exactly what to expect from chemotherapy ~ just about anything. I feel thankfulness about Phil's recovery thus far, joyous that he has come back so strong ~ stronger in fact than when he first had chemo. But mostly, I feel at peace. At peace because I know that all of this is out of my control. It is so far beyond my reach that all I can do is respond to it as it happens and not let myself get caught up in building scenarios that haven't happened yet or may never happen. I'm taking life One Day At A Time ~ an adage from AA that holds truth for anyone in crisis certainly, but has wisdom for all of us.
At bedtime the other night Bennett was asking me what would happen if Daddy died. I told him we'd be OK. I told him he'd be OK. Then I paraphrased the bible and told him "Don't worry about tomorrow for tomorrow will take care of itself. Today has enough trouble of it's own." He smiled at me and said, "That's pretty good Mom, can I use that?" I told him of course he could and that it was God, not me who was the genius behind it. God's been the genius behind all of this whether we understand what He's up to or not. He's brought Phil out of the valley of the shadow of death once so my money's on Him. Whatever His plan, we'll be OK.
It's been three months since I was last here; me and many more of us, holding vigil and praying that Phil would survive the surgeries and complications that attended his first full round of chemotherapy. What a difference time makes and what a testament to the power of prayer he is just walking in here again. Although Phil says he never felt like he was going to die, there was ample testimony given us by his doctors regarding that very possibility that it is nothing short of a miracle that he is with us and has returned to his current state of fitness.
There are things that feel very familiar to me about this first day of chemo ~ the getting up early to be admitted, the whole intake process and paperwork, the changing of Phil's port access lines and the starting of fluids before the big guns of chemo start. The many heads popping in the door to check in on things. The fashionable attire. And, just like last time, the "canoodling" in his oh-so-comfy hospital bed, napping off and on while everything was mixed up and made ready down in the pharmacy.
What is different this time is my perspective. The first time around I was shell shocked and reeling from the pace and seriousness our lives had suddenly taken on. We had just left our lives behind in Washington and though my family was here, there was barely a foundation under our feet to stand on yet. We thought we knew what to expect from chemotherapy so we hoped for the best. We were very well informed and educated and we were prayerful. But as you know, things went awry and the complications began and continued to pile up. The reeling continued and didn't abate for me for about 5 months, until right around Christmas.
And now here I am again. It is difficult to fully put into words what I feel today because I am still coming to understand what I have been through these last months. Suffice it to say I feel a mild sense of apprehension mixed with relief that we are moving forward again in treating the lymphoma. This time I know exactly what to expect from chemotherapy ~ just about anything. I feel thankfulness about Phil's recovery thus far, joyous that he has come back so strong ~ stronger in fact than when he first had chemo. But mostly, I feel at peace. At peace because I know that all of this is out of my control. It is so far beyond my reach that all I can do is respond to it as it happens and not let myself get caught up in building scenarios that haven't happened yet or may never happen. I'm taking life One Day At A Time ~ an adage from AA that holds truth for anyone in crisis certainly, but has wisdom for all of us.
At bedtime the other night Bennett was asking me what would happen if Daddy died. I told him we'd be OK. I told him he'd be OK. Then I paraphrased the bible and told him "Don't worry about tomorrow for tomorrow will take care of itself. Today has enough trouble of it's own." He smiled at me and said, "That's pretty good Mom, can I use that?" I told him of course he could and that it was God, not me who was the genius behind it. God's been the genius behind all of this whether we understand what He's up to or not. He's brought Phil out of the valley of the shadow of death once so my money's on Him. Whatever His plan, we'll be OK.
Tuesday, January 18, 2011
So Proud!
For several months now I've been hearing about a club for kids who have a parent with cancer. It's run locally by an incredible woman named Honor, a cancer survivor herself. The group is called C.L.I.M.B. and stands for Children's Lives Include Moments of Bravery. Having lived with my kids for the last 6 months, I can tell you that is the truest statement I've ever heard. When I first told Bennett and Olivia about this club I purposefully played up the part about the pizza and all the cool kids they'd meet but it was unnecessary ~ they were on board from the start. It took several months for enough kids to sign up and all throughout that time they surprisingly continued to ask me "when is that cancer club going to start?!"
Last night the club finally met for the first time but sadly Bennett and Olivia were the only two in attendance. Honor and her co-leader Sara were as charming and welcoming as could be and despite the lack of other "cool kids" my kiddos walked right in and made themselves at home. This was no big feat for Bennett but for Olivia this could have been a huge stumbling block ~ thankfully, her big brother was with her and our preparations in advance of last night's meeting served us well.
On the way there we told the kids they could feel anything at this club and there wasn't anything they couldn't talk about. Bennett asked if that meant he could say bad things about us and we said yes, as long as he didn't use disrespectful words. He said he was angry at Dad for having cancer at one point, not angry at the cancer. Hooray! He was naming his feelings and talking about them. Olivia chimed in about feeling mad and sad. Oh happy day ~ this is what I personally have been striving for. All those nights spent reading to them and having pillow talk about their days, talking about what is going on inside of them, retelling it to them so eventually they can name it for themselves and tell it to me, or someone else. Eureka and thank you Jesus!
When we picked them up after having a great sushi dinner ourselves, they told us all about the feelings they talked about and the pizza and cookies. All in all, C.L.I.M.B was a huge success and worth the wait. With Phil's chemotherapy starting in 2 weeks, the timing couldn't have been more perfect ~ once again, God has shown His genius and His timing is perfect. He has put these two women in place to love on and help support our children through Chapter Two and beyond.
Again and with more sincerity, Thank You Jesus!
Last night the club finally met for the first time but sadly Bennett and Olivia were the only two in attendance. Honor and her co-leader Sara were as charming and welcoming as could be and despite the lack of other "cool kids" my kiddos walked right in and made themselves at home. This was no big feat for Bennett but for Olivia this could have been a huge stumbling block ~ thankfully, her big brother was with her and our preparations in advance of last night's meeting served us well.
On the way there we told the kids they could feel anything at this club and there wasn't anything they couldn't talk about. Bennett asked if that meant he could say bad things about us and we said yes, as long as he didn't use disrespectful words. He said he was angry at Dad for having cancer at one point, not angry at the cancer. Hooray! He was naming his feelings and talking about them. Olivia chimed in about feeling mad and sad. Oh happy day ~ this is what I personally have been striving for. All those nights spent reading to them and having pillow talk about their days, talking about what is going on inside of them, retelling it to them so eventually they can name it for themselves and tell it to me, or someone else. Eureka and thank you Jesus!
When we picked them up after having a great sushi dinner ourselves, they told us all about the feelings they talked about and the pizza and cookies. All in all, C.L.I.M.B was a huge success and worth the wait. With Phil's chemotherapy starting in 2 weeks, the timing couldn't have been more perfect ~ once again, God has shown His genius and His timing is perfect. He has put these two women in place to love on and help support our children through Chapter Two and beyond.
Again and with more sincerity, Thank You Jesus!
Friday, December 17, 2010
Tsunami's and Celebrations
Take a seat folks, this is a long one!
Several years ago I gathered my closest friends together for a retreat to talk about "Winter Spirituality". I was living in Washington at the time and desired to go deeper with my lady friends. Having gone to some retreats with my oldest sister and having experienced incredible intimacy and growth during those times, I craved more. I wanted it for myself and for my peeps. And while I was a little unsure if they'd respond to it as I did, I knew I wanted to offer it to them. I invited my sister Anita to lead us and we gathered one night to talk about this concept of "Winter Spirituality" ~ the hard times of faith; the cold, dark, frozen, quiet times with little observable life. They knew who she was from the constant stories I'd shared about her and that was enough for them to jump at my invitation.
Aside from holding a PhD in Psychology, they knew Anita ran a Christian psychotherapy practice and was my go-to person to help sift through everything useful I could learn about myself, my experiences and my faith. Intriguing enough in it's own right, yet that's not why they came. Remember the Christmas Tsunami of December 26th, 2004? I think everyone does. Well, it was just a month later in late January of 2005 when Anita's personal tsunami hit and we all got the news that her husband Randy had died suddenly and unexpectedly at age 51. At the time of our get together, my friends knew she was a few years into single-handedly raising two incredibly bright, independent, self-aware young girls while negotiating an enormous mountain of personal tragedy and grief. We were young mothers. We had young husbands. We wanted to know how she'd done it, how she was doing it, could it be done? That's why they came.
Little did I know about the tsunami that would hit my shores all these years later...
I don't remember a lot from that night. One thing I do recall with immense clarity is Anita saying something along the lines of this. "It's not a matter of if the shit will hit the fan, it's a matter of when". And she looked around the room at all of us ~ a gathering of women friends who suddenly felt a bit more vulnerable. She went on to describe the harsh realities of her situation, how several of her women friends were battling breast cancer and some were dying, how marriages were being torn apart by mental illness and scores of other maladies and realities of our collective life and world. The other thing I remember is she said "get ready" and "surround yourself with the body of Christ".
You may say to yourself reading this, wait a minute!! This was supposed to be a time of deeper connection and bonding and wasn't this going to be a gift from you to your friends, etc...??!! WTF! You craved more of this? Who exactly are you Sally and what are you playing at? Well, yes, I do in fact crave more of this, and yes I do consider this a gift to my friends and to anyone who is reading this as well. Because frankly, this is all there is ~ the truth of life. For me, there is nothing else. As I learned in PA school from a cancer patient, "shit happens, carry a big shovel". Tsunami's happen and in fact, that night I had no idea but God was preparing me in His wisdom for one helluva tsunami in our lives. Here I was, thinking I was providing my sister Anita, this sage conduit of wisdom, to come talk to my friends to show them how it really was when God was really saying "no Sal, I'm talking to you girlfriend". Well, thank you Sweet Jesus once again.
Randy was one of a kind and his death has changed my family and each one of us forever. I do not take anything or anyone for granted ever. My relationships and my orientation to things that are fleeting have changed. Nothing trumps relationships. Nothing trumps people. I am striving to live a life of love. Anita is still right beside me every step, we are still grieving Randy, she is still my most trusted advisor and there is no way I could negotiate these rough seas without her experience and guidance. But God is a genius and He wastes nothing ~ not even our sorrow or our pain. He uses it for us to help one another. It continues to be my hope that our tsunami is helping you and that our pain and suffering and our joys and celebrations are helping you.
PHIL'S UPDATE
On that note, we continue to have much to celebrate!! A CT scan of Phil's chest/abdomen/pelvis was repeated this week to re-stage his lymphoma. If you remember, his only other CT scan was done to initially diagnose him back in early August. At that time he had a huge 13 cm mass of lymphoma tissue in the center of his chest. That area is now shrunken to 2.6cm and there is no residual lymphoma (only scarring) in the axillary nodes (armpits). The radiologist describes this as "dramatically improved".
Last week Phil's kidney functions started to worsen and he had to stop taking his iron-binding medication Exjade. Since then his creatinine levels have also improved and are stabilized. They are much better and the plan now stands with continuing the Ambisome through the new year and then probably changing to an oral medication.
He has been feeling a bit more tired lately but his Hgb and HCT are holding steady and well at 10.9 and 32% which are much better than they've been in a long time. I think the fatigue is actually more due to activity than anything else. He's been walking our dog, going Christmas shopping, going out to dinner, seeing the Nutcracker, going to the movies etc. He's quite the busy guy these days! BTW, he's also pushing 190 lbs and can almost pinch an inch!
And now for Dr. Kossman's take on things... First of all, he thinks Phil looks fantastic and joins the chorus of the other guys saying he has surpassed all predictions that he'd even be here. That always makes me feel great for Phil and then I feel kinda weird...it's very sobering no matter how many times I hear it. Kossman explains that Phil has had one complete round of chemo and at the least probably needs four. He's been spending the last 10 days talking with Dr. Mayer about where to go from here. Now we find ourselves at a crossroads, a philosophical dilemma; a delightful, difficult dilemma.
Here are the options from here as they see them.
1) Don't rattle the cage. Do no chemo.
The idea here is that we've bought some time. The lymphoma will eventually come back but without using chemo we can have optimum quality of time, not necessarily quantity. Eventually chemo will have to be done again but waiting until the lymphoma forces our hand is the main idea here. Just keep doing what we're doing.
2) Treat with chemo and go after the lymphoma now.
The idea here is to go after the lymphoma while it is already beaten back. It is more likely that the lymphoma will respond to the chemo if it is treated now but there is a distinct risk of making the mucor reactivate with this approach. Additionally, there will need to be a lot of nuanced decisions regarding the chemo to avoid renal toxicity etc. Dexamathazone will not be given as the risk of inflaming infectious growth is way too high.
So, you see, there is no play book, no studies to guide us, no standard of care. We're really down to a philosophical dilemma and a judgment call that only Phil can make. He's made his call and he's gonna go all in again. Big surprise huh? He'll have another MRI right after the new year to recheck the brain issues then probably one last meeting of the minds to firm up the chemo plans. Then we'll let you know how to pray when we know.
Until then, we'll be celebrating what we have to celebrate, riding the wave of our tsunami, opening presents and eating prime rib, and basking in the reason for the season ~ Jesus Christ our Emmanuel!
Several years ago I gathered my closest friends together for a retreat to talk about "Winter Spirituality". I was living in Washington at the time and desired to go deeper with my lady friends. Having gone to some retreats with my oldest sister and having experienced incredible intimacy and growth during those times, I craved more. I wanted it for myself and for my peeps. And while I was a little unsure if they'd respond to it as I did, I knew I wanted to offer it to them. I invited my sister Anita to lead us and we gathered one night to talk about this concept of "Winter Spirituality" ~ the hard times of faith; the cold, dark, frozen, quiet times with little observable life. They knew who she was from the constant stories I'd shared about her and that was enough for them to jump at my invitation.
Aside from holding a PhD in Psychology, they knew Anita ran a Christian psychotherapy practice and was my go-to person to help sift through everything useful I could learn about myself, my experiences and my faith. Intriguing enough in it's own right, yet that's not why they came. Remember the Christmas Tsunami of December 26th, 2004? I think everyone does. Well, it was just a month later in late January of 2005 when Anita's personal tsunami hit and we all got the news that her husband Randy had died suddenly and unexpectedly at age 51. At the time of our get together, my friends knew she was a few years into single-handedly raising two incredibly bright, independent, self-aware young girls while negotiating an enormous mountain of personal tragedy and grief. We were young mothers. We had young husbands. We wanted to know how she'd done it, how she was doing it, could it be done? That's why they came.
Little did I know about the tsunami that would hit my shores all these years later...
I don't remember a lot from that night. One thing I do recall with immense clarity is Anita saying something along the lines of this. "It's not a matter of if the shit will hit the fan, it's a matter of when". And she looked around the room at all of us ~ a gathering of women friends who suddenly felt a bit more vulnerable. She went on to describe the harsh realities of her situation, how several of her women friends were battling breast cancer and some were dying, how marriages were being torn apart by mental illness and scores of other maladies and realities of our collective life and world. The other thing I remember is she said "get ready" and "surround yourself with the body of Christ".
You may say to yourself reading this, wait a minute!! This was supposed to be a time of deeper connection and bonding and wasn't this going to be a gift from you to your friends, etc...??!! WTF! You craved more of this? Who exactly are you Sally and what are you playing at? Well, yes, I do in fact crave more of this, and yes I do consider this a gift to my friends and to anyone who is reading this as well. Because frankly, this is all there is ~ the truth of life. For me, there is nothing else. As I learned in PA school from a cancer patient, "shit happens, carry a big shovel". Tsunami's happen and in fact, that night I had no idea but God was preparing me in His wisdom for one helluva tsunami in our lives. Here I was, thinking I was providing my sister Anita, this sage conduit of wisdom, to come talk to my friends to show them how it really was when God was really saying "no Sal, I'm talking to you girlfriend". Well, thank you Sweet Jesus once again.
Randy was one of a kind and his death has changed my family and each one of us forever. I do not take anything or anyone for granted ever. My relationships and my orientation to things that are fleeting have changed. Nothing trumps relationships. Nothing trumps people. I am striving to live a life of love. Anita is still right beside me every step, we are still grieving Randy, she is still my most trusted advisor and there is no way I could negotiate these rough seas without her experience and guidance. But God is a genius and He wastes nothing ~ not even our sorrow or our pain. He uses it for us to help one another. It continues to be my hope that our tsunami is helping you and that our pain and suffering and our joys and celebrations are helping you.
PHIL'S UPDATE
On that note, we continue to have much to celebrate!! A CT scan of Phil's chest/abdomen/pelvis was repeated this week to re-stage his lymphoma. If you remember, his only other CT scan was done to initially diagnose him back in early August. At that time he had a huge 13 cm mass of lymphoma tissue in the center of his chest. That area is now shrunken to 2.6cm and there is no residual lymphoma (only scarring) in the axillary nodes (armpits). The radiologist describes this as "dramatically improved".
Last week Phil's kidney functions started to worsen and he had to stop taking his iron-binding medication Exjade. Since then his creatinine levels have also improved and are stabilized. They are much better and the plan now stands with continuing the Ambisome through the new year and then probably changing to an oral medication.
He has been feeling a bit more tired lately but his Hgb and HCT are holding steady and well at 10.9 and 32% which are much better than they've been in a long time. I think the fatigue is actually more due to activity than anything else. He's been walking our dog, going Christmas shopping, going out to dinner, seeing the Nutcracker, going to the movies etc. He's quite the busy guy these days! BTW, he's also pushing 190 lbs and can almost pinch an inch!
And now for Dr. Kossman's take on things... First of all, he thinks Phil looks fantastic and joins the chorus of the other guys saying he has surpassed all predictions that he'd even be here. That always makes me feel great for Phil and then I feel kinda weird...it's very sobering no matter how many times I hear it. Kossman explains that Phil has had one complete round of chemo and at the least probably needs four. He's been spending the last 10 days talking with Dr. Mayer about where to go from here. Now we find ourselves at a crossroads, a philosophical dilemma; a delightful, difficult dilemma.
Here are the options from here as they see them.
1) Don't rattle the cage. Do no chemo.
The idea here is that we've bought some time. The lymphoma will eventually come back but without using chemo we can have optimum quality of time, not necessarily quantity. Eventually chemo will have to be done again but waiting until the lymphoma forces our hand is the main idea here. Just keep doing what we're doing.
2) Treat with chemo and go after the lymphoma now.
The idea here is to go after the lymphoma while it is already beaten back. It is more likely that the lymphoma will respond to the chemo if it is treated now but there is a distinct risk of making the mucor reactivate with this approach. Additionally, there will need to be a lot of nuanced decisions regarding the chemo to avoid renal toxicity etc. Dexamathazone will not be given as the risk of inflaming infectious growth is way too high.
So, you see, there is no play book, no studies to guide us, no standard of care. We're really down to a philosophical dilemma and a judgment call that only Phil can make. He's made his call and he's gonna go all in again. Big surprise huh? He'll have another MRI right after the new year to recheck the brain issues then probably one last meeting of the minds to firm up the chemo plans. Then we'll let you know how to pray when we know.
Until then, we'll be celebrating what we have to celebrate, riding the wave of our tsunami, opening presents and eating prime rib, and basking in the reason for the season ~ Jesus Christ our Emmanuel!
Friday, October 1, 2010
Man on Wire
There's this little journal I carry around with me everywhere I go. Or at least I did. Originally I recorded all the overwhelming information that Dr. Kossman gave us at each and every visit- from the initial diagnosis, to the details of the chemotherapy on through to each hospitalization and follow up visit. Over time it has evolved to include consultations, phone calls, CT and MRI results, lab reports and what read like nursing notes regarding his intake/output, blood sugars, and assorted minutiae. Anything and everything I might need to remember or refer to has been written down "for the record".
I say I "did" carry it everywhere I go because lately, my personal ambition (dare I say, crusade) to record every fact of this medical odyssey (dare I say, nightmare) has finally wavered and I haven't always had it with me. Now I've got scraps of paper everywhere or am relying on memory...sleep-deprived memory. More often than not, when it is with me, I don't reflexively reach for it when the doctors come into the room. Of late, the consults, labs, scans and general information has been coming at us so rapid-fire and the content has been so entirely consuming that to take short-hand notes for posterity seems absurd at best. More to the point, it's hard to write when I've got Phil's hands in mine.
Given all the results we've absorbed lately, I've been thinking about all the things that can't be measured, scanned and quantified such as Phil's sense of well-being and his inner life. Although there are no formal parameters to measure an individual by, when someone is "off" you can just tell. Now I believe Phil TOTALLY gets what is going on with his situation. When the physicians come in and tell him the results of his cultures and biopsies, tell him of his need for surgery NOW, tell him the risks and benefits of procedures etc., I know he gets it in his mind. But Phil is different since this hospitalization, encephalitis and eye infection. His affect is a bit flatter. His emotions aren't full range. That depth you expect with him just isn't there. Some of his response is no doubt secondary to having had encephalitis, infection in the frontal lobe of his brain, and the effects of being barraged with so much medication. While he's still got that sparkle in his eye, he just can't go deep like he used to and still mount the fight he's facing. He can't let a shadow of a doubt in. Yet, miraculously, he has very little anxiety, AT ALL. There is a peace about him even as the physicians speak to him about the grave nature of his situation.
For those of us who are here with him it is clear that he is different but it is also evident that this may be a mercy. We who hear the undiluted facts, who hear the truth without sugar coating over and over again see that an inability for things to sink in too deeply is an incredible mercy that God has given Phil.
This morning he has been moved out of the ICU back up to the corner office on 3 south where he was received with smiles by the nurses on duty. His things were hanging in the closet, his "Kick It's Butt Phil" poster was hanging on the bulletin board where we left it and the door had a piece of paper on it that said 'reserved for P.C.' on it. It is strangely comforting to be back in this room, away from the intensely sick folks in the unit and yet, disquieting to still be HERE at all.
Dr. Kossman called last night on my way home from HERE and we had a long conversation filled with medical details (what I would typically pull over to the side of the road to write down in 'the book ') and philosophical questions regarding Phil's future course. All of his brain tissue cultures are growing Mucor, and only Mucor, the nasty fungus. It is what we all expected but have been praying against. The surgeon had told us that during the operation he saw evidence of a breach from the sinus/orbit into the frontal lobe so we know where the Mucor came from. That unfortunately is what is going on in the deep brain structures as well. It just sucks, plain and simple.
Additionally, there is still Mucor involved in Phil's eye and surrounding tissues, even though they have been stable. For now we are so pleased that he has come through the surgery and has not had progression of his eye issues but the Mucor is still there and it is still a formidable enemy. Our ammunition is Ambizone, a powerful antifungal, and surgery. Currently, the Ambizone is beginning to take a toll on Phil's kidney function and it is depleting his potassium levels. He is taking replacements of potassium routinely and his kidneys are being monitored closely. Surgery is a huge risk due to the substantive area involved and the ever present concerns for healing. And as I've said before, chemotherapy is off the table even though the lymphoma is still there in the background.
The physicians on his case- Kossman, Ghosh, Mansfield and Mayer will be convening a case conference to coordinate the best plan of care for our Iron Man. It is my desire and the hope of Dr. Kossman that Phil go home on Monday or Tuesday for home IV therapy with a home health nurse coming in to monitor his blood draws daily. We know he needs a change of venue, fresh air and his own surroundings. From there, we will keep you posted as always on the next steps as Phil walks this tightrope.
I say I "did" carry it everywhere I go because lately, my personal ambition (dare I say, crusade) to record every fact of this medical odyssey (dare I say, nightmare) has finally wavered and I haven't always had it with me. Now I've got scraps of paper everywhere or am relying on memory...sleep-deprived memory. More often than not, when it is with me, I don't reflexively reach for it when the doctors come into the room. Of late, the consults, labs, scans and general information has been coming at us so rapid-fire and the content has been so entirely consuming that to take short-hand notes for posterity seems absurd at best. More to the point, it's hard to write when I've got Phil's hands in mine.
Given all the results we've absorbed lately, I've been thinking about all the things that can't be measured, scanned and quantified such as Phil's sense of well-being and his inner life. Although there are no formal parameters to measure an individual by, when someone is "off" you can just tell. Now I believe Phil TOTALLY gets what is going on with his situation. When the physicians come in and tell him the results of his cultures and biopsies, tell him of his need for surgery NOW, tell him the risks and benefits of procedures etc., I know he gets it in his mind. But Phil is different since this hospitalization, encephalitis and eye infection. His affect is a bit flatter. His emotions aren't full range. That depth you expect with him just isn't there. Some of his response is no doubt secondary to having had encephalitis, infection in the frontal lobe of his brain, and the effects of being barraged with so much medication. While he's still got that sparkle in his eye, he just can't go deep like he used to and still mount the fight he's facing. He can't let a shadow of a doubt in. Yet, miraculously, he has very little anxiety, AT ALL. There is a peace about him even as the physicians speak to him about the grave nature of his situation.
For those of us who are here with him it is clear that he is different but it is also evident that this may be a mercy. We who hear the undiluted facts, who hear the truth without sugar coating over and over again see that an inability for things to sink in too deeply is an incredible mercy that God has given Phil.
This morning he has been moved out of the ICU back up to the corner office on 3 south where he was received with smiles by the nurses on duty. His things were hanging in the closet, his "Kick It's Butt Phil" poster was hanging on the bulletin board where we left it and the door had a piece of paper on it that said 'reserved for P.C.' on it. It is strangely comforting to be back in this room, away from the intensely sick folks in the unit and yet, disquieting to still be HERE at all.
Dr. Kossman called last night on my way home from HERE and we had a long conversation filled with medical details (what I would typically pull over to the side of the road to write down in 'the book ') and philosophical questions regarding Phil's future course. All of his brain tissue cultures are growing Mucor, and only Mucor, the nasty fungus. It is what we all expected but have been praying against. The surgeon had told us that during the operation he saw evidence of a breach from the sinus/orbit into the frontal lobe so we know where the Mucor came from. That unfortunately is what is going on in the deep brain structures as well. It just sucks, plain and simple.
Additionally, there is still Mucor involved in Phil's eye and surrounding tissues, even though they have been stable. For now we are so pleased that he has come through the surgery and has not had progression of his eye issues but the Mucor is still there and it is still a formidable enemy. Our ammunition is Ambizone, a powerful antifungal, and surgery. Currently, the Ambizone is beginning to take a toll on Phil's kidney function and it is depleting his potassium levels. He is taking replacements of potassium routinely and his kidneys are being monitored closely. Surgery is a huge risk due to the substantive area involved and the ever present concerns for healing. And as I've said before, chemotherapy is off the table even though the lymphoma is still there in the background.
The physicians on his case- Kossman, Ghosh, Mansfield and Mayer will be convening a case conference to coordinate the best plan of care for our Iron Man. It is my desire and the hope of Dr. Kossman that Phil go home on Monday or Tuesday for home IV therapy with a home health nurse coming in to monitor his blood draws daily. We know he needs a change of venue, fresh air and his own surroundings. From there, we will keep you posted as always on the next steps as Phil walks this tightrope.
Wednesday, September 22, 2010
All In
We are no longer living day to day around here, time is now marked in 12 hour increments. That's how quickly things are changing and progressing.
Phil had another MRI this morning and the cultures have yielded more definitive results. Today has been a big and unfortunately, very difficult day. The cultures show absolute evidence of a mixed bacterial and fungal infection in the sinuses and henceforth in the brain. The fungus is called Mucormycosis and is very common in diabetics and immunosuppressed patients. The MRI shows advancement since yesterday of the infection to involve new portions of the brain. So despite having been on high doses of antibiotics and antifungals, ground is not being gained.
The optimal treatment for this fungus is surgical debridement, which although radical, is Phil's best chance for eradicating the infection. Combined with his antifungals, tomorrow morning he will be having a very involved neurosurgery to remove his left sinuses, his left eye and orbit and portions of his left brain that are infected and non-functioning anyway. It's hard core -- as if it wasn't before. During the next several weeks his chemotherapy will have to be put on hold lest any further immunosuppression allow the Mucor to take the upper hand.
We are awaiting the final debriefing from the team of surgeons and are covering Phil with our prayers and love. We (Jeff, David, Anita and I) are also telling stories and laughing a bit too. Phil is tired and a bit fearful for tomorrow's events but he is also ready to go. He's not one to sit back and do nothing if there's something to be done. He's going for it. Bravest man I know, facing down terrible odds and "fighting a raging fire in the middle of a hurricane".
If Phil were playing poker, I'd say he was all in. Trusting God, and all in.
Phil had another MRI this morning and the cultures have yielded more definitive results. Today has been a big and unfortunately, very difficult day. The cultures show absolute evidence of a mixed bacterial and fungal infection in the sinuses and henceforth in the brain. The fungus is called Mucormycosis and is very common in diabetics and immunosuppressed patients. The MRI shows advancement since yesterday of the infection to involve new portions of the brain. So despite having been on high doses of antibiotics and antifungals, ground is not being gained.
The optimal treatment for this fungus is surgical debridement, which although radical, is Phil's best chance for eradicating the infection. Combined with his antifungals, tomorrow morning he will be having a very involved neurosurgery to remove his left sinuses, his left eye and orbit and portions of his left brain that are infected and non-functioning anyway. It's hard core -- as if it wasn't before. During the next several weeks his chemotherapy will have to be put on hold lest any further immunosuppression allow the Mucor to take the upper hand.
We are awaiting the final debriefing from the team of surgeons and are covering Phil with our prayers and love. We (Jeff, David, Anita and I) are also telling stories and laughing a bit too. Phil is tired and a bit fearful for tomorrow's events but he is also ready to go. He's not one to sit back and do nothing if there's something to be done. He's going for it. Bravest man I know, facing down terrible odds and "fighting a raging fire in the middle of a hurricane".
If Phil were playing poker, I'd say he was all in. Trusting God, and all in.
Sunday, August 29, 2010
On the Rebound
At some point in the early hours of Saturday morning when he rolled over in his semi-conscious state of sleep, Phil had an amazing experience. He realized he'd done it without pain and without having thought about it. For most people this would hardly even make the list of memorable experiences but Phil's definition of memorable experiences is clearly much different than most people's these days. For him to roll over without planning it out and taking a deep breath to prep himself IS a big deal. Thank you Neulastin, thank you WBC's (white blood cells). Never, and I mean never, underestimate the enormous role your immune system plays in how well you feel day to day.
Twenty pounds lighter, ghostly pale and having a white count that had bottomed out Phil was merely a shadow of himself when I tucked him in Friday night. Dr. Kossman told us Friday that when the WBC's start coming back we'd be amazed at how quickly he'd bounce back. Fo-shizzle!
Friday he ate, let's see...almost nothing. He did, let's see...nothing but sleep and try to conserve enough energy to make it to the car under his own power to get to the appointment. But Saturday now that's a horse of a different color. That whole rolling over without thinking about it was just the tip of the iceberg. For the first time in a long time I got to sleep in and when I eventually pried myself out of bed, the kids had been fed and Phil was, wait for it, hangin' out with them! Praise God from Whom All Blessings Flow!
Saturday he ate, let's see...bacon for breakfast, and from there it just kept going. Every few hours he had his head in the refrigerator to see what else we had in there and his appetite was back in earnest. As for activity, he was up for most of the day and had his first meal at the table as our two whole families sat down for dinner for the first time since moving in. Today, Sunday, was even better than yesterday and we've had time and energy to talk about what we've just gone through, what we've learned so far and to plan for the next cycle.
We know that days 8-11 are the worst but that the sun rises again on days 12-14 or so. We know the chemo packs a punch but it can't poison the spirit. And we know we have a community of friends and family with us every step of the way on this journey that makes us cry, question, struggle and sometimes even laugh. Today Phil ate like a horse to strengthen himself for the next round, today he helped around the house, today his body made more and more WBCs to combat infection and today I got to be with all 3 of my sisters. Today was a great day.
Twenty pounds lighter, ghostly pale and having a white count that had bottomed out Phil was merely a shadow of himself when I tucked him in Friday night. Dr. Kossman told us Friday that when the WBC's start coming back we'd be amazed at how quickly he'd bounce back. Fo-shizzle!
Friday he ate, let's see...almost nothing. He did, let's see...nothing but sleep and try to conserve enough energy to make it to the car under his own power to get to the appointment. But Saturday now that's a horse of a different color. That whole rolling over without thinking about it was just the tip of the iceberg. For the first time in a long time I got to sleep in and when I eventually pried myself out of bed, the kids had been fed and Phil was, wait for it, hangin' out with them! Praise God from Whom All Blessings Flow!
Saturday he ate, let's see...bacon for breakfast, and from there it just kept going. Every few hours he had his head in the refrigerator to see what else we had in there and his appetite was back in earnest. As for activity, he was up for most of the day and had his first meal at the table as our two whole families sat down for dinner for the first time since moving in. Today, Sunday, was even better than yesterday and we've had time and energy to talk about what we've just gone through, what we've learned so far and to plan for the next cycle.
We know that days 8-11 are the worst but that the sun rises again on days 12-14 or so. We know the chemo packs a punch but it can't poison the spirit. And we know we have a community of friends and family with us every step of the way on this journey that makes us cry, question, struggle and sometimes even laugh. Today Phil ate like a horse to strengthen himself for the next round, today he helped around the house, today his body made more and more WBCs to combat infection and today I got to be with all 3 of my sisters. Today was a great day.
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