Philip is with Jesus tonight.
His eyes opened and he smiled, then he turned to look at me before exhaling his last. He was valiant until the end. We will miss him dearly.
Well done good and faithful servant.
Showing posts with label lymphoma. Show all posts
Showing posts with label lymphoma. Show all posts
Tuesday, November 15, 2011
Saturday, November 12, 2011
The Veil is Thin
I'm finding it challenging to know where to start, what to write, what exactly it is I want to say today. So much has happened and, in true Libra fashion, I fluctuate between wanting to write it all down so I don't forget a moment of this strange state of being I find myself in, and wanting to just let it be ~ to continue as I've done over the last few days and lose touch with the passage of time and let it ride.
I'm laying on the bed in the back room with my sister Anita, and she is helping me sort out what is important for you to know about Phil and our family time. Hospice is in place, which means he sleeps a bit more comfortably in a hospital bed in our room, and I feel supported by an amazing team of caregivers. Every twelve hours is a new place in this journey. Phil is comfortable, not in pain, able to smile and comprehend the nuances of conversation, but is slow to respond and fading quietly.
Our living room is Ground Zero for us most of the day, with visitors and family coming in and out. I am trying to balance Phil's needs and my own, with those of my children and his loved ones who need to see and be with him. It is exhausting and we haven't quite gotten it right every day. I don't know how long we will be in this disrupted space but I do feel that God is holding us. I don't understand how people do this without Him. New mercies are needed every morning.
Last night I was reading about what it means to "die a good death." Throughout this illness, Phil has never complained, railed against God, or asked "why me?" How many of us could say that? I want to do whatever it takes to accompany him to his good death. Please pray that I can be faithful in the middle of the night when he needs me. And when I need patience and grace to lovingly sort out the kids' grief and emotional pain.
This is a sacred privilege for me to honor my husband as he leads us all to the Cross. We are catching glimpses of Jesus in these precarious days of uncertainty but we know for certain that all shall be well. Phil is surely dying but we know that this is ultimately his resurrection story.
I'm laying on the bed in the back room with my sister Anita, and she is helping me sort out what is important for you to know about Phil and our family time. Hospice is in place, which means he sleeps a bit more comfortably in a hospital bed in our room, and I feel supported by an amazing team of caregivers. Every twelve hours is a new place in this journey. Phil is comfortable, not in pain, able to smile and comprehend the nuances of conversation, but is slow to respond and fading quietly.
Our living room is Ground Zero for us most of the day, with visitors and family coming in and out. I am trying to balance Phil's needs and my own, with those of my children and his loved ones who need to see and be with him. It is exhausting and we haven't quite gotten it right every day. I don't know how long we will be in this disrupted space but I do feel that God is holding us. I don't understand how people do this without Him. New mercies are needed every morning.
Last night I was reading about what it means to "die a good death." Throughout this illness, Phil has never complained, railed against God, or asked "why me?" How many of us could say that? I want to do whatever it takes to accompany him to his good death. Please pray that I can be faithful in the middle of the night when he needs me. And when I need patience and grace to lovingly sort out the kids' grief and emotional pain.
This is a sacred privilege for me to honor my husband as he leads us all to the Cross. We are catching glimpses of Jesus in these precarious days of uncertainty but we know for certain that all shall be well. Phil is surely dying but we know that this is ultimately his resurrection story.
Tuesday, November 8, 2011
Update on Phil
Phil is growing ever more weak and fatigued and sleeping more hours of the day, a blessing in itself. We had a weekend of family and friends visiting and he was able to participate in that. It was incredibly taxing, however.
Yesterday with Dr. Kossman we learned his platelets (at 10K) are dangerously low and put him at risk for a spontaneous bleed so he decided to receive one last transfusion. This was no small decision since it meant spending the better part of the day in the hospital being admitted, typed and crossed then transfused only to go home and sleep for the rest of the day with little interaction. We also decided to begin hospice services. It is a huge relief for me to know that I will no longer be solely responsible for the decisions in the middle of the night and that I will have more help walking my children through this painful transition. As for Phil, his desire to die at home with us can now be made that much more comfortable and achievable. I can see in his entire body since making this decision, that he has begun to relax and let go of the fight. I am relieved for him.
Your comments, prayers and scriptures have been nothing short of manna for our weary souls. Thank you for continuing your vigil with us and for describing to us your love and experiences of and with Phil. My children especially will need to reflect on these stories and comments in the days, weeks and years to come.
Yesterday with Dr. Kossman we learned his platelets (at 10K) are dangerously low and put him at risk for a spontaneous bleed so he decided to receive one last transfusion. This was no small decision since it meant spending the better part of the day in the hospital being admitted, typed and crossed then transfused only to go home and sleep for the rest of the day with little interaction. We also decided to begin hospice services. It is a huge relief for me to know that I will no longer be solely responsible for the decisions in the middle of the night and that I will have more help walking my children through this painful transition. As for Phil, his desire to die at home with us can now be made that much more comfortable and achievable. I can see in his entire body since making this decision, that he has begun to relax and let go of the fight. I am relieved for him.
Your comments, prayers and scriptures have been nothing short of manna for our weary souls. Thank you for continuing your vigil with us and for describing to us your love and experiences of and with Phil. My children especially will need to reflect on these stories and comments in the days, weeks and years to come.
Thursday, November 3, 2011
Undaunted Courage
I felt badly this morning as I blew my hair dry and put on an outfit that seemed to match just a little too well. As I pulled on my good boots and got ready to go see Phil in the hospital I felt indulgent for looking so much better than I felt. For looking too nice. It felt so damned inappropriate because Phil is dying.
He is in renal failure, isn't making platelets or red cells and is not eating well. He can't tolerate anymore chemotherapy and has come to the end of his long journey. Valiance and courage continue to characterize his life and those of us gathered here are blessed to be alongside him as he faces the challenges of the coming days.
Pray for a peaceful passage for our Iron Man warrior, father, son, brother, husband and friend.
*please respect our family time as we draw together to love and support one another and refrain from phone calls. Email messages and comments are much appreciated
Cards and letters may be sent to:
1426 Lomita Road
El Cajon, CA 92020
He is in renal failure, isn't making platelets or red cells and is not eating well. He can't tolerate anymore chemotherapy and has come to the end of his long journey. Valiance and courage continue to characterize his life and those of us gathered here are blessed to be alongside him as he faces the challenges of the coming days.
Pray for a peaceful passage for our Iron Man warrior, father, son, brother, husband and friend.
*please respect our family time as we draw together to love and support one another and refrain from phone calls. Email messages and comments are much appreciated
Cards and letters may be sent to:
1426 Lomita Road
El Cajon, CA 92020
Monday, October 17, 2011
A Better Day
Phil came home from the hospital on Saturday after his blood sugars came down to normal. For you medical people out there, he was metabolically acidotic (highest blood glucose was 588) and required 2 units of packed RBCs and a unit of platelets. The Campath had taken his hematocrit down from 30% to 24% in 48 hours. Seriously potent stuff.
Now it's Monday and he just finished his second dose of Campath at 5mg (3mg previously) and tolerated it fairly well. Just felt cold at the end but had no actual chills or other side effects like before. After the Campath a liter of normal saline was run in and he started feeling pretty lousy with a bit of nausea and vomiting but some anti-emetics helped with that. Overall, it was a much much better day!
Dr. Kossman examined him and feels he has responded "remarkably well" to the Campath considering what a small dose he was given. His lymph node size has diminished drastically from 2 cm to 1.5 cm in his supraclavicular area and there are no palpable lymph nodes in his underarm or in his neck where previously there were nodes there of 1 and 2 cm respectively. This is phenomenal considering Phil has only received 3% of the total recommended dosage!!
The roller coaster keeps on rolling and we keep hanging on. Today has been pretty good all things considered. We will go home and await the next dip and turn, thankful for the peacefulness of this day thus far. Thank you for your prayers and petitions.
Now it's Monday and he just finished his second dose of Campath at 5mg (3mg previously) and tolerated it fairly well. Just felt cold at the end but had no actual chills or other side effects like before. After the Campath a liter of normal saline was run in and he started feeling pretty lousy with a bit of nausea and vomiting but some anti-emetics helped with that. Overall, it was a much much better day!
Dr. Kossman examined him and feels he has responded "remarkably well" to the Campath considering what a small dose he was given. His lymph node size has diminished drastically from 2 cm to 1.5 cm in his supraclavicular area and there are no palpable lymph nodes in his underarm or in his neck where previously there were nodes there of 1 and 2 cm respectively. This is phenomenal considering Phil has only received 3% of the total recommended dosage!!
The roller coaster keeps on rolling and we keep hanging on. Today has been pretty good all things considered. We will go home and await the next dip and turn, thankful for the peacefulness of this day thus far. Thank you for your prayers and petitions.
Saturday, October 15, 2011
A Moment's Rest
I suppose if you wait long enough things do change. In our case, Phil's blood sugars came down, he was transfused with platelets and RBCs and we both got some much needed sleep. My migraine finally subsided and my hacking cough has settled down a bit. I hesitate to say that we both feel more like ourselves again. He certainly is looking more like himself than he has in about three weeks.
The first wave of the Cavalry (Tricia) left only to be reinforced by my sister Anita who drove down from Pasadena yesterday at rush hour - God bless her through and through. I arrived at the hospital to bring him home today to find him dozing off for a quick nap after breakfast. There's no hurry to get home other than the obvious desire to get outta here so I'm letting him catch some Zzzz's before the nurses come in and do their discharge song and dance. Then we'll be on our way home to rest up until Monday's appointment with Dr. Kossman for the next round of chemo.
Yep. The next round. It will be smaller than previously thought due to the infusion reaction and the chances of having another just like it. Phil does have the option of stopping the Campath and will have the weekend to consider this option. He know's it's his last best option for a chance at remission. He also knows there is the continued possibility of an infusion reaction with the next dose or two and the need for steroids should that happen. However, the literature suggests some people never have another reaction and that is what we are praying for. There is just no way of knowing.
His endocrinologist is concerned that there may be some other underlying metabolic issues at play with his blood sugar control. He did a cortisol suppression test to look at Phil's adrenal gland function while he was here in the hospital. Prior to the Campath and the high blood sugars Phil was having incredibly LOW blood sugars in the morning and I was having difficulty rousing him from sleep. His diabetes has been a very difficult disease to manage given the backdrop of lymphoma and the metabolic disturbances it creates. I do not know the outcome of the suppression test yet but know that Phil's clinical picture continues to be confusing and very challenging to manage. The road ahead narrows and his options lessen daily. Nothing is easy or clear cut anymore. I believe Monday will tell us a lot about the direction things will go from here.
Until then we will enjoy Phil feeling better and having energy. Olivia's 7th birthday will be celebrated with her friends at the bowling alley and we will praise God for the blessing and delight she is. There will be joy in our home, laughter and respite from the troubles of the last few weeks. We will enjoy this temporary peace. We will rest. We will be together. Blessed be His name!
The first wave of the Cavalry (Tricia) left only to be reinforced by my sister Anita who drove down from Pasadena yesterday at rush hour - God bless her through and through. I arrived at the hospital to bring him home today to find him dozing off for a quick nap after breakfast. There's no hurry to get home other than the obvious desire to get outta here so I'm letting him catch some Zzzz's before the nurses come in and do their discharge song and dance. Then we'll be on our way home to rest up until Monday's appointment with Dr. Kossman for the next round of chemo.
Yep. The next round. It will be smaller than previously thought due to the infusion reaction and the chances of having another just like it. Phil does have the option of stopping the Campath and will have the weekend to consider this option. He know's it's his last best option for a chance at remission. He also knows there is the continued possibility of an infusion reaction with the next dose or two and the need for steroids should that happen. However, the literature suggests some people never have another reaction and that is what we are praying for. There is just no way of knowing.
His endocrinologist is concerned that there may be some other underlying metabolic issues at play with his blood sugar control. He did a cortisol suppression test to look at Phil's adrenal gland function while he was here in the hospital. Prior to the Campath and the high blood sugars Phil was having incredibly LOW blood sugars in the morning and I was having difficulty rousing him from sleep. His diabetes has been a very difficult disease to manage given the backdrop of lymphoma and the metabolic disturbances it creates. I do not know the outcome of the suppression test yet but know that Phil's clinical picture continues to be confusing and very challenging to manage. The road ahead narrows and his options lessen daily. Nothing is easy or clear cut anymore. I believe Monday will tell us a lot about the direction things will go from here.
Until then we will enjoy Phil feeling better and having energy. Olivia's 7th birthday will be celebrated with her friends at the bowling alley and we will praise God for the blessing and delight she is. There will be joy in our home, laughter and respite from the troubles of the last few weeks. We will enjoy this temporary peace. We will rest. We will be together. Blessed be His name!
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.
Friday, September 30, 2011
Another Relapse
It’s been entirely too long since I last posted. There are many reasons for that – not the least of which is my general state of fatigue and burn out on posting about cancer and the roller coaster we ride all the time. I have felt the need to keep you up to date on what’s been going on but haven’t had the time, energy or usual calling to sit down and put it into words. Until now, that is.
A few days ago I had prepared a beautiful post about bone marrow transplant (BMT) and was very close to publishing it. It was full of details about what we’ve been doing over the last month and what our journey ahead looked like as we anticipated finding a donor etc. Thankfully I didn’t post it and don’t have to back track. Everything has changed for us so now I’ll recap and bring you up to date on where we find ourselves and what’s going on with Phil.
A little over a week ago Phil and I met with young Dr. Kossman and Phil won approval to fly to Atlanta to see his friends for a long weekend. At that visit he told the doctor that he found some new lymph nodes above his left clavicle. At the time they were like small peas in size and none of us were certain of their significance – they could have been reactive to the pleural effusion he just had or to the mild infection he’d been treated for. Of course, they could mean recurrence of the lymphoma but they were small and we all hoped that wasn’t the reason. The doctor told him to go to Atlanta, have a great time, don’t mess with the lymph nodes and he'd see how they looked when he got home.
Phil did have a great time and returned home thankful to have seen his lifelong friends. But he returned home tired with a sore chest and difficulty sleeping at night from pain. The day after he came home he had another thorocentesis (#4) and almost 2 liters were removed from around his left lung. He immediately became nauseated, had severe pain and was dizzy and lightheaded. We spent the day in the radiology department where he received I.V. fluids, morphine and anti-emetics. A rough, tough, homecoming.
The next day when he followed up with our Dr. Kossman he looked like crap and felt even worse. The Percocet he took for pain at home was not holding him through the night and he was exhausted. Dr. Kossman measured the lymph nodes in his neck and they were now 1.8 and 2 cm respectively and he had developed another one down below his clavicle measuring 2 cm as well. There was also a new one in his axilla (underarm). With these new nodes, the nodes we knew of on his last scan and another malignant effusion, Phil was clearly in relapse. As Dr. Kossman said, “your disease is coming back forcefully and in a lot of places at once.”
So. No bone marrow transplant. They are not done on patients who are not in remission. On that note, neither brother is a match. If Phil achieves remission again he will have what is called a MUD transplant (Matched Unrelated Donor transplant) with a donor from the National Registry. This also means he will stop the nelarabine chemotherapy. It is no longer working. He will move on to the next option called alemtuzumab or Campath-1H. It is a monoclonal antibody which targets CD-52 protein and knocks out T lymphocytes (all of them). Unfortunately, by knocking out all T cells and not just cancerous ones it is very immunosuppressive and will put Phil at risk of opportunistic infections – like Mucor. He will have to resume ambisone, his favorite!
He will be having a CT/Pet scan to check the status and extent of disease again before restarting treatment. That is scheduled for the middle of next week. Until then he will basically be untreated and in an unopposed disease state. That means more suffering and discomfort for him. Our kids clearly know he is ill but we have yet to explain the full extent of what is going on. Once again we call on you to hold us up in your prayers as we negotiate these numbing, stressful and bittersweet times as a family.
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!
Saturday, June 25, 2011
Inward Bound
Sitting around with friends in college I heard legendary stories about this "life changing" program called Outward Bound. Many were the students who told of a cold night spent huddled under a bush or make-shift shelter, testing the limits of their physical and mental endurance in order to make it through their solo experience (24 hours spent alone in nature). It sounded both awesome and intimidating. I'm certain that if given the opportunity to experience Outward Bound back then, I wouldn't have chosen the journey. The idea of being completely by myself for 24 hours, let alone in the middle of nowhere, did not sound remotely appealing. A physical education major, I think I'd have been alright with the physical demands of the program. However, my inside world, although very familiar to me, was not a very stable nor well organized place at that time. I had a good idea of what I'd find if I had to go plumbing there for strength and resilience on a dark cold night during my solo experience and it wasn't comforting. The mental and spiritual test was what I feared and I didn't want to be pushed to see what I was made of - I already had an inclining and it wasn't pretty.
I haven't thought about Outward Bound for years now and I outgrew the fear of how I'd perform long ago. Having experienced life's vicissitudes, I've built abundant inner resources, gleaned from the passage of time, the wisdom that comes from deep introspection and the benefit of psychotherapy. I no longer have an unstable, unorganized or un-examined inner life. Although there probably was a point in time where I might have loved the challenge of Outward Bound, it has long since passed and I don't feel that I've missed anything by not having gone on that journey. In point of fact, my inner life IS my life and now in this refining fire of Phil's cancer Inward Bound is the only journey I'm truly interested in.
Speaking of Phil's journey, there is news to share. He is recently home from his latest chemotherapy regimen and did very well with it; the best round so far in some ways. He tolerated the triple medication cocktail so well that he ate heartily and rarely had any nausea. He enjoyed visitors and walked the halls daily, keeping up his strength and maintaining his popularity with the staff. Prior to admission however he was noting some soreness in his left rib cage and fluctuating shoulder pain. During the hospital stay Dr. Kossman ordered a chest xray which showed Phil had another pleural effusion and there was a questionable area in the center of his chest. This could have been artifact from the pleural effusion but he needed a CT scan to find out what it really was. An Interventional Radiologist was on hand for the CT and drew 1 Liter of fluid off of Phil's lungs (that's a lot!) and a quick read showed a lymph node in the middle of his chest.
Now, it's never a good thing when Dr. Kossman calls me first thing in the morning and says he needs to talk to me about "what's going on with your husband". I'm all too familiar with this drill. This happened the morning after the CT scan before I went in to see Phil. He reminded me again about the liter of fluid and the lymph node in Phil's chest. But he went on to say that the fluid was all lymphocytes meaning that Phil's lymphoma was recurring and the lymph node in his chest measured 5 cm. Ah shit. Not good. Not what we were prepared for and yet, I think, we both knew deep inside that pleural effusions don't just keep recurring for NO reason, and certainly not effusions of that size. Later as Phil and I cried and talked about it together, we realized that the lymph node had grown since his last chemo treatment 9 weeks ago when he had developed the right sided effusion and had his last CT scan. In other words, it grew quickly and right on the heels of very aggressive chemotherapy. Ah double shit. Not good at all.
Well, that was a week ago and we've since celebrated my father's 80th birthday with my five siblings, and Father's Day as well with both he and Phil. It was a crusher of a weekend, celebrating my awesome dad and the life he's lived, the family he's raised and the lives he's touched. He played a huge role in raising my sister Terry's sons and seeing that documented in picture after picture was very special and yet full of conflicting emotions of grief, hope, awe, wonder, thanksgiving and also plenty of prayerful petition that Phil will live to see his kids grow up. While we do not know where God will take us from here we do know that He has laid a path in front of us and has walked with us every step of the way. To question the wisdom of His ways now would be folly.
Phil is in recovery from his current chemotherapy and will hopefully not need any transfusions over this weekend. So far so good. We will meet with Dr. Kossman Monday to recheck his counts and again on Friday (while we move into our new house by the way). He is going to be followed closely and Kossman will be culling through the literature to see where we go from here for the best treatment strategy. When we know something we will share it with you. Until then, please continue to cover Phil and our family in your generous prayers.
As for Phil, he says Inward Bound is where the real journey is, the journey to the center of who God made us. We're going deeper still.
Proverbs 19:21
Many are the plans in a man's heart, but it is the Lord's purpose that prevails.
I haven't thought about Outward Bound for years now and I outgrew the fear of how I'd perform long ago. Having experienced life's vicissitudes, I've built abundant inner resources, gleaned from the passage of time, the wisdom that comes from deep introspection and the benefit of psychotherapy. I no longer have an unstable, unorganized or un-examined inner life. Although there probably was a point in time where I might have loved the challenge of Outward Bound, it has long since passed and I don't feel that I've missed anything by not having gone on that journey. In point of fact, my inner life IS my life and now in this refining fire of Phil's cancer Inward Bound is the only journey I'm truly interested in.
Speaking of Phil's journey, there is news to share. He is recently home from his latest chemotherapy regimen and did very well with it; the best round so far in some ways. He tolerated the triple medication cocktail so well that he ate heartily and rarely had any nausea. He enjoyed visitors and walked the halls daily, keeping up his strength and maintaining his popularity with the staff. Prior to admission however he was noting some soreness in his left rib cage and fluctuating shoulder pain. During the hospital stay Dr. Kossman ordered a chest xray which showed Phil had another pleural effusion and there was a questionable area in the center of his chest. This could have been artifact from the pleural effusion but he needed a CT scan to find out what it really was. An Interventional Radiologist was on hand for the CT and drew 1 Liter of fluid off of Phil's lungs (that's a lot!) and a quick read showed a lymph node in the middle of his chest.
Now, it's never a good thing when Dr. Kossman calls me first thing in the morning and says he needs to talk to me about "what's going on with your husband". I'm all too familiar with this drill. This happened the morning after the CT scan before I went in to see Phil. He reminded me again about the liter of fluid and the lymph node in Phil's chest. But he went on to say that the fluid was all lymphocytes meaning that Phil's lymphoma was recurring and the lymph node in his chest measured 5 cm. Ah shit. Not good. Not what we were prepared for and yet, I think, we both knew deep inside that pleural effusions don't just keep recurring for NO reason, and certainly not effusions of that size. Later as Phil and I cried and talked about it together, we realized that the lymph node had grown since his last chemo treatment 9 weeks ago when he had developed the right sided effusion and had his last CT scan. In other words, it grew quickly and right on the heels of very aggressive chemotherapy. Ah double shit. Not good at all.
Well, that was a week ago and we've since celebrated my father's 80th birthday with my five siblings, and Father's Day as well with both he and Phil. It was a crusher of a weekend, celebrating my awesome dad and the life he's lived, the family he's raised and the lives he's touched. He played a huge role in raising my sister Terry's sons and seeing that documented in picture after picture was very special and yet full of conflicting emotions of grief, hope, awe, wonder, thanksgiving and also plenty of prayerful petition that Phil will live to see his kids grow up. While we do not know where God will take us from here we do know that He has laid a path in front of us and has walked with us every step of the way. To question the wisdom of His ways now would be folly.
Phil is in recovery from his current chemotherapy and will hopefully not need any transfusions over this weekend. So far so good. We will meet with Dr. Kossman Monday to recheck his counts and again on Friday (while we move into our new house by the way). He is going to be followed closely and Kossman will be culling through the literature to see where we go from here for the best treatment strategy. When we know something we will share it with you. Until then, please continue to cover Phil and our family in your generous prayers.
As for Phil, he says Inward Bound is where the real journey is, the journey to the center of who God made us. We're going deeper still.
Proverbs 19:21
Many are the plans in a man's heart, but it is the Lord's purpose that prevails.
Thursday, May 19, 2011
Lymphoma's Hall of Fame
Mr. T - from The "A" Team, known for his catchphrase "pity the fool"
Junior Wells - Chicago blues harmonica player, famous for playing with Muddy Waters, Buddy Guy, Bonnie Raitt, The Rolling Stones and Van Morrison
Jim Ryan - most notable accomplishment as Illinois Attorney General was his $9.1 billion settlement from tobacco companies
Joey Ramone - lead singer of the punkrock band The Ramones and a counterculture icon
Jacqueline Kennedy Onassis - wife of the 35th President (JFK) and First Lady of the United States. Book editor, art contributor and fashion icon. Forever a symbol of her husband's assassination, even after marrying shipping magnate Aristotle Onassis
Gene Wilder - stage and screen actor, writer, director and author. Famously known for roles in Willy Wonka, Young Frankenstein, Stir Crazy, Blazing Saddles, and The Woman in Red. Married to Gilda Radner of SNL fame
Charles Lindbergh - flew first solo non-stop flight from Long Island to Paris in 1927.
King Hussein of Jordan - remembered as one who helped forge peace with Israel
Paul Allen - multi-billionaire who co-founded Microsoft with friend Bill Gates
Paul Azinger - PGA golfer and occasional on air analyst, PGA Championship Winner 1993
Ed Bradley - American journalist best known for 26 years of award-winning work on CBS News program 60 Minutes
Gabriel Garcia Marquez - Columbian Nobel prize winning novelist and author of One Thousand Years of Solitude and Love in the Time of Cholera
Mario Lemieux - former Canadian NHL forward who played 17 seasons as a forward with the Pittsburgh Penguins, widely regarded as one of the best players of all time
Roger Maris - an American MLB right fielder who, during the 1961 season, hit 61 home runs for the New York Yankees, breaking Babe Ruth's single-season record (set in 1927). Maris' record would stand for 37 years
Sidney Lumet - American director, producer and screenwriter who was nominated for Academy Awards for 12 Angry men, Dog Day Afternoon, Network and The Verdict
Golda Meir - the 4th Prime Minister of the State of Israel, the "Iron Lady" of Israeli Politics
Andres Galarraga - Venezuelan former MLB first baseman for the Montreal Expos
Rowdy Roddy Piper - of World Wrestling Entertainment fame
Fred Thompson - actor, former U.S. Senator, 2008 Presidential candidate, columnist and talk show radio host
Junior Wells - Chicago blues harmonica player, famous for playing with Muddy Waters, Buddy Guy, Bonnie Raitt, The Rolling Stones and Van Morrison
Jim Ryan - most notable accomplishment as Illinois Attorney General was his $9.1 billion settlement from tobacco companies
Joey Ramone - lead singer of the punkrock band The Ramones and a counterculture icon
Jacqueline Kennedy Onassis - wife of the 35th President (JFK) and First Lady of the United States. Book editor, art contributor and fashion icon. Forever a symbol of her husband's assassination, even after marrying shipping magnate Aristotle Onassis
Gene Wilder - stage and screen actor, writer, director and author. Famously known for roles in Willy Wonka, Young Frankenstein, Stir Crazy, Blazing Saddles, and The Woman in Red. Married to Gilda Radner of SNL fame
Charles Lindbergh - flew first solo non-stop flight from Long Island to Paris in 1927.
King Hussein of Jordan - remembered as one who helped forge peace with Israel
Paul Allen - multi-billionaire who co-founded Microsoft with friend Bill Gates
Paul Azinger - PGA golfer and occasional on air analyst, PGA Championship Winner 1993
Ed Bradley - American journalist best known for 26 years of award-winning work on CBS News program 60 Minutes
Gabriel Garcia Marquez - Columbian Nobel prize winning novelist and author of One Thousand Years of Solitude and Love in the Time of Cholera
Mario Lemieux - former Canadian NHL forward who played 17 seasons as a forward with the Pittsburgh Penguins, widely regarded as one of the best players of all time
Roger Maris - an American MLB right fielder who, during the 1961 season, hit 61 home runs for the New York Yankees, breaking Babe Ruth's single-season record (set in 1927). Maris' record would stand for 37 years
Sidney Lumet - American director, producer and screenwriter who was nominated for Academy Awards for 12 Angry men, Dog Day Afternoon, Network and The Verdict
Golda Meir - the 4th Prime Minister of the State of Israel, the "Iron Lady" of Israeli Politics
Andres Galarraga - Venezuelan former MLB first baseman for the Montreal Expos
Rowdy Roddy Piper - of World Wrestling Entertainment fame
Fred Thompson - actor, former U.S. Senator, 2008 Presidential candidate, columnist and talk show radio host
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.
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.
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!
Tuesday, October 19, 2010
Super Star
It's been a week of follow up visits and Phil has received rave reviews. As I mentioned earlier, he was called an "outlier" by Dr. Ghosh. When he saw Dr. Kossman earlier this week he had gained a few pounds, was more energetic than he'd been for over a month and was able to make a few jokes with the office staff like in days of old. Everyone remarked at how far he'd come since being discharged from the hospital. He had surpassed all expectations.
We also saw Dr. Mayer who has always been the most serious of the bunch. He kept to character and shared the most recent lab results with us, presenting us with the news that Phil's kidneys are doing well and have stabilized on the current dosing schedule of Ambisone. He too was encouraged and will follow up with us once the results of Phil's brain MRI from Thursday are back.
Today we followed up with Dr. Mansfield, his ENT oncology surgeon. After a brief endoscopy of his sinuses, the good doctor emphatically reassured us that Phil is doing exceedingly well. He called him a "Super Star". He told us that when he first heard of Phil's case, saw his MRI, blood counts, read his history and gathered a gestalt of the whole situation he felt the clinical picture was quite grim. Today however, he feels Phil is in a "superior position" and there is a lot of reason to hope. He said he was genuinely excited and not just trying to give him a pep talk.
Dr. Mansfield explained that he has managed seven cases of Mucor in the last 2 years. That may not sound like a lot but actually, there is no one in the county with more experience. And every one of his patients have survived. Of those seven patients, only one has been an immunocompromised patient like Phil, but she too survived. His point in telling us all of this was to underscore that the decision points for Phil's treatment are still being made painstakingly slow and very thoughtfully. He is a case of one with Mucor on one side of the aisle and lymphoma on the other. There are no studies guiding his physicians on best practices and outcomes.
Interestingly, Phil's case is well known throughout the regional medical community because it has been presented every week or so at Skull Base Rounds, Neuro-radiology Rounds, Infectious Disease Rounds, etc., complete with medical history, scans, labs and surgical video. Literally the best medical minds in San Diego are coming together to make peer-reviewed decisions about the best way forward.
For now, with the kidneys working well and tolerating the Ambisome, the next MRI holds a wealth of information for what comes next. Dr. Mansfield put it very plainly and clearly. We need to know that the Mucor is gone in the basal ganglia or as close to it as we can get before we restart chemo. If we put Phil back on chemo too soon and the Mucor comes back it would be his demise. So, we bide our time on Ambisone and keep thrashing the Mucor with all we can and wait for Thursday's scan to see where we are.
Against a very painful, stressful backdrop of grief and trauma that our family is processing through, we are thankful that Phil is a super star and is giving us reason's to hope.
We also saw Dr. Mayer who has always been the most serious of the bunch. He kept to character and shared the most recent lab results with us, presenting us with the news that Phil's kidneys are doing well and have stabilized on the current dosing schedule of Ambisone. He too was encouraged and will follow up with us once the results of Phil's brain MRI from Thursday are back.
Today we followed up with Dr. Mansfield, his ENT oncology surgeon. After a brief endoscopy of his sinuses, the good doctor emphatically reassured us that Phil is doing exceedingly well. He called him a "Super Star". He told us that when he first heard of Phil's case, saw his MRI, blood counts, read his history and gathered a gestalt of the whole situation he felt the clinical picture was quite grim. Today however, he feels Phil is in a "superior position" and there is a lot of reason to hope. He said he was genuinely excited and not just trying to give him a pep talk.
Dr. Mansfield explained that he has managed seven cases of Mucor in the last 2 years. That may not sound like a lot but actually, there is no one in the county with more experience. And every one of his patients have survived. Of those seven patients, only one has been an immunocompromised patient like Phil, but she too survived. His point in telling us all of this was to underscore that the decision points for Phil's treatment are still being made painstakingly slow and very thoughtfully. He is a case of one with Mucor on one side of the aisle and lymphoma on the other. There are no studies guiding his physicians on best practices and outcomes.
Interestingly, Phil's case is well known throughout the regional medical community because it has been presented every week or so at Skull Base Rounds, Neuro-radiology Rounds, Infectious Disease Rounds, etc., complete with medical history, scans, labs and surgical video. Literally the best medical minds in San Diego are coming together to make peer-reviewed decisions about the best way forward.
For now, with the kidneys working well and tolerating the Ambisome, the next MRI holds a wealth of information for what comes next. Dr. Mansfield put it very plainly and clearly. We need to know that the Mucor is gone in the basal ganglia or as close to it as we can get before we restart chemo. If we put Phil back on chemo too soon and the Mucor comes back it would be his demise. So, we bide our time on Ambisone and keep thrashing the Mucor with all we can and wait for Thursday's scan to see where we are.
Against a very painful, stressful backdrop of grief and trauma that our family is processing through, we are thankful that Phil is a super star and is giving us reason's to hope.
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