Our Wednesday morning came and went with little fanfare. It was a very quiet day around the oncology office. Sort of strange for midweek but peaceful and restful none the less. Phil had his second dose of chemotherapy and spent the morning dozing with the other patients in the "chemo-lounge", chilling in a wanna-be Lazy Boy with a crocheted blanket draped over his legs for comfort. The hours pass slowly so he usually reads or dinks around on my iPad, checking emails or looking at "bike porn" as I refer to his habit of looking at either motorcycles or bicycles on the web. Wednesday he mostly sat around awaiting for the results of his thorocentesis cytology to come back.
When Dr. Steven Kossman shared the results with him it was in hushed tones. There were lymphoma cells in the flow cytometry. Not a lot maybe, but they were there. This isn't the news we were hoping for but certainly what we knew was probable. It was disheartening to say the least. And confusing. We still don't entirely understand why Phil continues to get these effusions or know if they are an impediment to his BMT future. When I picked him up from his session, Phil was tired, slightly nauseated and bummed, but being Phil, he was trying to put his game face on. As soon as he got home he was on the phone to his contact at UCSD, calling to get answers about what this means for his situation with the BMT.
What he learned for now is that BMTs are best when patients are in full remission but they are performed for patients who are not in remission. We are still moving ahead with our process and have been asked to come in on Tuesday to meet with their social workers to discuss the whole process and learn more extensively about the demands on me, the care giver, the family, Phil himself, etc. The results from his brother's David and Jamie's HLA match testing should come in at the end and middle of this and next week, respectively. In the meantime, Dr. S. Kossman will confer with Dr. Ball on the next appropriate course of action regarding chemotherapy (if any changes need to be made) and Phil will follow up on Friday to continue with the last treatment.
Our seemingly forever process moves forward and the roller coaster keeps rolling. Stay on your knees.
Thursday, September 15, 2011
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~
Friday, September 2, 2011
Be the Match Registry
Anyone interested in learning more about becoming a bone marrow donor can find everything in one place at Be the Match Marrow Registry at https://www.marrow.org
Thousands of patients with leukemia and other life-threatening diseases depend on the Be The Match Registry® to find a match to save their life.
Patients need donors who are a genetic match. Even with a registry of millions, many patients cannot find a match. For a successful transplant, a patient needs a matching donor. Special testing determines whether a patient and a bone marrow donor or umbilical cord blood are a good match. The closer the match, the better for the patient.
Race and ethnicity matter!
Because the markers used in matching are inherited, patients are more likely to match someone from their own race or ethnicity. Adding more donors and cord blood from diverse racial and ethnic backgrounds to the Be The Match Registry increases the likelihood that all patients will find the match they need.
Your heritage can make all the difference. If you are from one of the following communities, you are especially encouraged to join the Be The Match Registry or donate umbilical cord blood:
Black and African American
American Indian and Alaska Native
Asian, including South Asian
Native Hawaiian and other Pacific Islander
Hispanic and Latino
Multiple race
Thousands of patients with leukemia and other life-threatening diseases depend on the Be The Match Registry® to find a match to save their life.
Patients need donors who are a genetic match. Even with a registry of millions, many patients cannot find a match. For a successful transplant, a patient needs a matching donor. Special testing determines whether a patient and a bone marrow donor or umbilical cord blood are a good match. The closer the match, the better for the patient.
Race and ethnicity matter!
Because the markers used in matching are inherited, patients are more likely to match someone from their own race or ethnicity. Adding more donors and cord blood from diverse racial and ethnic backgrounds to the Be The Match Registry increases the likelihood that all patients will find the match they need.
Your heritage can make all the difference. If you are from one of the following communities, you are especially encouraged to join the Be The Match Registry or donate umbilical cord blood:
Black and African American
American Indian and Alaska Native
Asian, including South Asian
Native Hawaiian and other Pacific Islander
Hispanic and Latino
Multiple race
Thursday, September 1, 2011
Game Changer
The results are in and things couldn't look much better. Phil's bone marrow biopsy appeared normal morphologically (regarding the form and structure of the bones) and the flow cytometry studies (the microscopic function) were also normal. His marrow is back to an absolutely normal healthy state!
His PET/CT scan showed a residual 1.3 x 2 cm chest nodule which is barely hyper-metabolic (active), some mild residual scar tissue around the heart with no metabolic activity, scarring in the thoracic vertebra and pelvis with no metabolic activity and no remaining pleural effusions. This is an excellent report! So excellent in fact, that Dr. Kossman referred Phil to Dr. Edward Ball, Bone Marrow Transplant Specialist at UCSD's Moores Cancer Center for a consultation. We saw him and his staff yesterday for an educational and inspiring overview of bone marrow transplantation (BMT) and left with a binder full of information and directions about what our next steps are.
Phil is heading into the very down days of post chemo exhaustion so BMT is not on his front burner at the moment. However, knowing that it is now within the realm of possibility after so many setbacks and complications and so much suffering, I can say on his behalf that we feel a measure of relief and the beginnings of real optimism for a cure. These are VERY difficult words for either of us to say, needless to point out, ideas to think about or entertain. I would appreciate your continued prayers as we negotiate the next steps in this journey.
More details about BMT will be coming in future posts but here are the high points from yesterday's consultation:
1) Phil is definitely a candidate for BMT.
2) Due to continued concern for possible mucor infection, he will remain on his oral antifungal agent throughout the entire process of BMT.
3) The first step involves insurance (of course) and getting all the ducks in a row in order to do the HLA (human leukocyte antigen) testing of his brother's to see if they are a good match. They represent the best chance for an optimal match. From there we will go to the National Bone Marrow Registry.
4) In the meantime, Phil will continue his chemotherapy and is scheduled to begin his next round on September 12th. We have a follow up visit with Dr. Ball in about three weeks and will be doing a lot of reading in the meantime. It feels good if not daunting to be changing gears again.
His PET/CT scan showed a residual 1.3 x 2 cm chest nodule which is barely hyper-metabolic (active), some mild residual scar tissue around the heart with no metabolic activity, scarring in the thoracic vertebra and pelvis with no metabolic activity and no remaining pleural effusions. This is an excellent report! So excellent in fact, that Dr. Kossman referred Phil to Dr. Edward Ball, Bone Marrow Transplant Specialist at UCSD's Moores Cancer Center for a consultation. We saw him and his staff yesterday for an educational and inspiring overview of bone marrow transplantation (BMT) and left with a binder full of information and directions about what our next steps are.
Phil is heading into the very down days of post chemo exhaustion so BMT is not on his front burner at the moment. However, knowing that it is now within the realm of possibility after so many setbacks and complications and so much suffering, I can say on his behalf that we feel a measure of relief and the beginnings of real optimism for a cure. These are VERY difficult words for either of us to say, needless to point out, ideas to think about or entertain. I would appreciate your continued prayers as we negotiate the next steps in this journey.
More details about BMT will be coming in future posts but here are the high points from yesterday's consultation:
1) Phil is definitely a candidate for BMT.
2) Due to continued concern for possible mucor infection, he will remain on his oral antifungal agent throughout the entire process of BMT.
3) The first step involves insurance (of course) and getting all the ducks in a row in order to do the HLA (human leukocyte antigen) testing of his brother's to see if they are a good match. They represent the best chance for an optimal match. From there we will go to the National Bone Marrow Registry.
4) In the meantime, Phil will continue his chemotherapy and is scheduled to begin his next round on September 12th. We have a follow up visit with Dr. Ball in about three weeks and will be doing a lot of reading in the meantime. It feels good if not daunting to be changing gears again.
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!
Together Again
I've returned from Washington and am ready for whatever comes next.
It never ceases to amaze me what a healing effect time spent with people who truly know me has on my well being. My peeps in Washington have walked so many miles with me - they literally prayed our kids into existence with me, saw me through painful, ugly times and then celebrated and partied with me like it was 1999 when those times passed. It was balm for this gal's weary soul just to BE with them. It didn't matter what we eventually ended up doing because it was the being with them that mattered. Of course it didn't hurt that we went shopping and bought new shoes and outfits, went boating and drank cocktails at the lake, took my kids inner-tubing and wake boarding, explored my girlfriend's garden and saw all the plants I'd given her flourishing under her care and just sat around going deep in conversation. It didn't hurt that I walked right into their closets and pantries like no time had passed, borrowed what I needed, our daughter's swapped clothes daily, and life picked up right were it left off. I stepped into my old life from my current life which up until now hadn't felt like much of one.
It's funny though, I was tired A LOT while I was there and remarked to myself that the pace we were running at wasn't that fast, in fact it was a normal pace for the "old" me. It's just that down in San Diego, we don't do that much socially and I was out of shape and practice. It was informative and telling. By the time we left I realized that the kids and I were ready to return to our quieter lifestyle. The life we live here is slower and less social due to the constraints of Phil's cancer and the limitations it puts on all of us. Still, Phil and I have purposefully hunkered down and drawn close together, choosing to spend our energy on our Conrad quartet, creating memories and influencing the kids' character for the long run.
While in Washington, I overheard someone remark about how much I'd changed since the last time she'd seen me. Being a woman I wondered if she thought I looked tired. Older and run down? Or was it because on that particular occasion I'd only paid a little attention to my hair and make up when in the old days I'd have been totally put together? In the end it didn't really matter because it was all true. I am tired and I am older and I am run down. I don't spend much time on my hair and make up and in fact, I cut my hair short in Washington so I don't have to style it all the time. At first I felt really sad at this remark, and that feeling does come and go from time to time but then I remind myself of what I truly care about - my kids, the memories we're creating and their character. I don't want them caring about what my hair looks like or whether my make up is totally put together or not. I'm more interested in the moment and in the healing effect of just being together. We seem to have found that in the slower pace of our quartet for now. Going back to my old life showed me that. How strange and how refreshing that was to learn.
It never ceases to amaze me what a healing effect time spent with people who truly know me has on my well being. My peeps in Washington have walked so many miles with me - they literally prayed our kids into existence with me, saw me through painful, ugly times and then celebrated and partied with me like it was 1999 when those times passed. It was balm for this gal's weary soul just to BE with them. It didn't matter what we eventually ended up doing because it was the being with them that mattered. Of course it didn't hurt that we went shopping and bought new shoes and outfits, went boating and drank cocktails at the lake, took my kids inner-tubing and wake boarding, explored my girlfriend's garden and saw all the plants I'd given her flourishing under her care and just sat around going deep in conversation. It didn't hurt that I walked right into their closets and pantries like no time had passed, borrowed what I needed, our daughter's swapped clothes daily, and life picked up right were it left off. I stepped into my old life from my current life which up until now hadn't felt like much of one.
It's funny though, I was tired A LOT while I was there and remarked to myself that the pace we were running at wasn't that fast, in fact it was a normal pace for the "old" me. It's just that down in San Diego, we don't do that much socially and I was out of shape and practice. It was informative and telling. By the time we left I realized that the kids and I were ready to return to our quieter lifestyle. The life we live here is slower and less social due to the constraints of Phil's cancer and the limitations it puts on all of us. Still, Phil and I have purposefully hunkered down and drawn close together, choosing to spend our energy on our Conrad quartet, creating memories and influencing the kids' character for the long run.
While in Washington, I overheard someone remark about how much I'd changed since the last time she'd seen me. Being a woman I wondered if she thought I looked tired. Older and run down? Or was it because on that particular occasion I'd only paid a little attention to my hair and make up when in the old days I'd have been totally put together? In the end it didn't really matter because it was all true. I am tired and I am older and I am run down. I don't spend much time on my hair and make up and in fact, I cut my hair short in Washington so I don't have to style it all the time. At first I felt really sad at this remark, and that feeling does come and go from time to time but then I remind myself of what I truly care about - my kids, the memories we're creating and their character. I don't want them caring about what my hair looks like or whether my make up is totally put together or not. I'm more interested in the moment and in the healing effect of just being together. We seem to have found that in the slower pace of our quartet for now. Going back to my old life showed me that. How strange and how refreshing that was to learn.
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.
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