Today it seems that every area of my life needs attention and there aren't enough hours in the day let alone enough psychic energy to bring to the fore. It stems from buying a house and trickles down from there with things like printing/signing/faxing documents for loan papers, includes calling my landlord to repair the leak that exists in my laundry room since the heater was installed as well as doing umpteen loads of laundry before taking my adolescent-chew-anything-and-everything hound to the dog park before I make a rash adoption plan for him because I don't want him to ruin my new house. Then there's the social security administration that has complicated my life by not paying the kid's portion of benefits this month so that I have to spend hours on the phone with them rectifying the situation (not to mention the fact that I need to get this is in order pronto for my underwriters!).
Did I mention that my car is starting to smell bad and is a debris field from the last week of frenzied activity of rushing to school in the mornings and baseball practices in the afternoons? Oh, and Bennett missed two days of school last week with asthmatic bronchitis and then spent 3 hours in the ER last weekend so he could get 3 stitches in his head after hitting it on the bathtub. Juvenile antics, that's all I'm going to say. He asked me if Daddy would be proud of him for how brave he was getting his stitches and it pained me to tell him that Daddy wouldn't be too happy to be in the ER at 2 a.m. Sorry little buddy but the truth hurts sometimes. Oh, and that'll be $500 please. Thanks. : )
I detail all the above because I very easily get caught up in the crap of my life. There is more I could tell you that went on these last few weeks but I feel badly just reciting a litany of complaints. I know my life is hard because of my grief process and my new found singularity but I also know I must pray and fight against the tendency to focus on the negative. It is all soooooooooooooo easy to do.
So, let me tell you about some wonderful women God has placed in my life. Melanie is a teacher in my son's grade (4th) and she lives just down the street. God put a burden on her heart to ask me if I wanted to do a bible study with her and another mother, Elizabeth, she knew from a previous classroom who was also a widow. Melanie was bold and followed God's lead and I said yes! Melanie has an infectious charm and energy and for those of you in WA, reminds me of Sammie Simons! She has a smile and a hug for everyone and is positive and radiant and loves the Lord. She is a few years older than me and I immediately considered her a friend and mentor. She loves my children and her family is incredible!! We have met several times and although Satan tries to foil our plans we continue to find ways to get together although I still haven't met Elizabeth!!
Julie also meets with us and she has 3 wonderful kids who are unique and fit so well with my kids. "O2" is Julie's daughter Olivia and my Olivia's buddy from first grade. She and her sister Josie and "O1" love to play American Girls together and have all-girl parties complete with signs (No Boys Allowed)! Julie's son Max and Bennett are all-boy and play Little League together, ride BMX and shoot air soft guns when they are not playing on the Wii or Playstation. It's a lovefest all around. And Julie is real. She is honest and open and wanting more and is in continual pursuit of the Lord as well. She is spicy and sassy and fun! Did I mention that she and her husband own a fantastic sushi restaurant?
Jann also lives right up the street and has taken me under her wing in so many small ways. Every once in a while my phone will buzz with a text and it's Jann, checking in on me to see how my heart and my head are. She always checks on my migraines and my spirit and I love her for that. She knows how bad both can get and she never forgets me. She also has a real sweet spot for Olivia and has watched her for me several times, creating some beautiful fun crafts with her and treating her like a real special guest. Jann consistently prays for us and know's what it's like to raise strong-willed children. Her presence in the background is comforting and encouraging.
Lastly and not least, Trenna continues to be my stalwart bedrock. She was, she is and she will be there. My love for her grows more with each passing day. I wouldn't have made it through any of this without her confident grace and reassurance. God was a genius ~ knitting us together at the age of 6, for such a time as this!
So there you have it. Things can seem pretty bad circumstantially but it's the people around you that make the difference. I don't have Phil by my side but God has provided a cloud of powerful women to fill in the gaps and they are mighty indeed. I know I need to focus on what He has given me amidst all this trouble the world deals out. Because one thing I know for sure, this world will continue to deal out trouble. Grab your friends and give thanks to "God, who causes everything to work together for the good of those who love God and are called according to his purpose for them." Romans 8:28
Showing posts with label no surrender. Show all posts
Showing posts with label no surrender. Show all posts
Friday, February 17, 2012
Friday, January 6, 2012
Thinking About You
"Do you think of Phil very often?" was the question my sister asked me as we were wrapping up our New Year's weekend together. It was with some difficulty that I struggled to answer. You'd think it would be a simple "yes" or "no" but instead I spent the next several minutes trying to put into words what my experience has been during the last six or seven weeks since he died. It was a challenging task because I am embarrassed to admit that I don't think of him as often as I think I "should".
I struggle to describe exactly what my grief has been like. Phil died in mid-November and before I knew it along came Thanksgiving, usually my favorite time of year. Then there was the rush of Christmas and the challenge to make it as special and joyful as possible for the kids. It all ended up a mixture of many stressful, surreal and thankfully, a few beautifully sublime moments. (So long 2011, don't let the door hit you in the butt on the way out).
Then just a day or so ago a friend sent me a link to an interview with Patrick Swayze's wife detailing her grief and the struggles she had taking care of him during his 22 months with pancreatic cancer. I read that she initially thought of Patrick every three or four minutes for the first few weeks. Holy crap! I can't even imagine what that was like. I so don't relate! At first blush I felt bad that I wasn't like that.
But something dawned on me and I felt immense relief at my insight and I took compassion on myself for not having dwelled on Phil these last weeks. You see, from the moment Phil received his diagnosis I'd done nothing but think of him. My life's dreams and passions ceased to move forward and all hands were on deck for the fight for Phil's life. So began my journey with balancing the battle with cancer, motherhood and maintaining my sanity ~ all of which I kept spinning like plates in a carnival side show. So now, to step back emotionally and not think of Phil all the time, let alone every three or four minutes, is a respite I have needed for a long time. To give myself permission to not feel guilty about it has been liberating. And it's not the first time I've had to give myself this kind of permission...sheesh.
In point of fact, what has happened is a transposition of sorts. Now I think of my children most of the time. I think of their grief and the anger they are exhibiting and of how I can parent them better especially now that I am alone (though not). I constantly think about their future and of all the things I now need to provide for them in accordance with the collective vision Phil and I had together to shape their budding characters and to fill their thirsty souls. And I reflect often on the difference between what they actually lost when Phil died and what I am unwilling to see them let go of along with that loss (their innocence, integrity, tenderness, compassion, faith). In recognizing the immense responsibility and privilege that is mine to raise these kiddos, I accordingly give myself permission to ask for help, pray, and cry as needed.
I often think of Phil in response to the overwhelming responsibility I feel to continue parenting these remarkable children "in the way they should go so that they will not stray from it". I miss him every day and am only just beginning to understand my grief and the grief of my children. None of us have the same response to his death and since each of them are rapidly growing and changing, I have to be on my toes all the time. If I were to think of Phil every three or four minutes I could not do what I have to do to get on with the business of living ~ and leading all of us on in that. And I find that for me personally, what I read recently rings true~
"People cry not because they are weak but because they have been strong for so long".
I struggle to describe exactly what my grief has been like. Phil died in mid-November and before I knew it along came Thanksgiving, usually my favorite time of year. Then there was the rush of Christmas and the challenge to make it as special and joyful as possible for the kids. It all ended up a mixture of many stressful, surreal and thankfully, a few beautifully sublime moments. (So long 2011, don't let the door hit you in the butt on the way out).
Then just a day or so ago a friend sent me a link to an interview with Patrick Swayze's wife detailing her grief and the struggles she had taking care of him during his 22 months with pancreatic cancer. I read that she initially thought of Patrick every three or four minutes for the first few weeks. Holy crap! I can't even imagine what that was like. I so don't relate! At first blush I felt bad that I wasn't like that.
But something dawned on me and I felt immense relief at my insight and I took compassion on myself for not having dwelled on Phil these last weeks. You see, from the moment Phil received his diagnosis I'd done nothing but think of him. My life's dreams and passions ceased to move forward and all hands were on deck for the fight for Phil's life. So began my journey with balancing the battle with cancer, motherhood and maintaining my sanity ~ all of which I kept spinning like plates in a carnival side show. So now, to step back emotionally and not think of Phil all the time, let alone every three or four minutes, is a respite I have needed for a long time. To give myself permission to not feel guilty about it has been liberating. And it's not the first time I've had to give myself this kind of permission...sheesh.
In point of fact, what has happened is a transposition of sorts. Now I think of my children most of the time. I think of their grief and the anger they are exhibiting and of how I can parent them better especially now that I am alone (though not). I constantly think about their future and of all the things I now need to provide for them in accordance with the collective vision Phil and I had together to shape their budding characters and to fill their thirsty souls. And I reflect often on the difference between what they actually lost when Phil died and what I am unwilling to see them let go of along with that loss (their innocence, integrity, tenderness, compassion, faith). In recognizing the immense responsibility and privilege that is mine to raise these kiddos, I accordingly give myself permission to ask for help, pray, and cry as needed.
I often think of Phil in response to the overwhelming responsibility I feel to continue parenting these remarkable children "in the way they should go so that they will not stray from it". I miss him every day and am only just beginning to understand my grief and the grief of my children. None of us have the same response to his death and since each of them are rapidly growing and changing, I have to be on my toes all the time. If I were to think of Phil every three or four minutes I could not do what I have to do to get on with the business of living ~ and leading all of us on in that. And I find that for me personally, what I read recently rings true~
"People cry not because they are weak but because they have been strong for so long".
Monday, October 31, 2011
No Surrender
Another eventful morning for us - Phil woke up nauseated and had dry heaves which has been the norm for over a week now. I suggested we shower together because he was vey unsteady and that way I could make sure he wouldn't fall. By the end he was totally exhausted and had to go back to bed for awhile. He was nauseated again and we ran late to the appt.
Dr. Kossman took a good look at him and reexamined all his nodes and systems. The supraclavicular node measured 2 cm still but the axillary one is 3 cm at it's longest. His liver span is 1 cm down from it's maximum of 4 cm when he was hospitalized for the out of control blood sugar. His spleen is tender but not enlarged. His wt today is 190, up from 185 last week but is falsely elevated - that 5 lb difference represents water weight since he is hardly eating and has 3+ pitting edema in his feet and ankles, extending just to above his knees.
Of major significance, his platelets were only 22K today after being transfused on Friday. They were 20k on Friday before transfusion so are rapidly being destroyed. Also, it's been 4 days since his last thorocentesis when almost 2 liters of fluid were removed from around his left lung and he's now got about 3 inches difference in dullness to percussion again. This is the shortest interval yet in which his pleural effusion has developed.
The low platelets are Kossman's biggest concern today. It's hard to tell whether they are low from the Campath or from lymphoma in the marrow without doing a bone biopsy. But if there is active disease elsewhere it is very likely to be in the marrow as well. So, we're at a philosophical junction again. Do more Campath and risk a further plummet in platelets? Or stop Campath and watch platelets for a few days then restart treatment (risking further time with unopposed disease)? And how do we best judge the overall effectiveness of Campath?
Dr. Kossman also spoke the words "we're running out of bullets" and mentioned the drug Romidepsin as the real last resort. It is for cutaneous T cell lymphoma and maybe an orphan drug (approved for only one diagnosis) for that matter and not to be approved by insurance. It's in the $10k range per dose which, without approval or well documented studies regarding efficacy, presents a whole additional set of philosophical questions. Anyway, he told Phil he thought the disease had reduced by about 50% on Campath but was still very active and he still has significant issues with the effusions, edema, platelets, continued marrow involvement and nodes in chest, neck, axilla that aren't fully responding. He says most patients have full response by 12 weeks but that after 12 DOSES it is usual to reevaluate.
Phil chose to go on with treatment today. It is going to be a Herculean effort on his part. Tomorrow will be Ambisone. Then Dr. Kossman will see him on Wed. and recheck the CBC. Otherwise, Kossman wants to give the last 2 doses he has here in the office (IV) then re-evaluate where Phil is and where to go at that point.
And that's the update for today. I'm tired but managing. The kids are struggling and crying more often. They are sensing what is going on and are very aware of Phil's diminishing capacities. We all are and it gets more difficult to watch as the days pass. We love him and see him fighting and hope he will get better. Those of us who know him well can imagine a scenario wherein he'll never say quit. Can see the circumstances dictating the outcome for him rather than him ever crying "Uncle". Such is the way of my warrior. No surrender.
Sent from my iPad
Sent from my iPad
Dr. Kossman took a good look at him and reexamined all his nodes and systems. The supraclavicular node measured 2 cm still but the axillary one is 3 cm at it's longest. His liver span is 1 cm down from it's maximum of 4 cm when he was hospitalized for the out of control blood sugar. His spleen is tender but not enlarged. His wt today is 190, up from 185 last week but is falsely elevated - that 5 lb difference represents water weight since he is hardly eating and has 3+ pitting edema in his feet and ankles, extending just to above his knees.
Of major significance, his platelets were only 22K today after being transfused on Friday. They were 20k on Friday before transfusion so are rapidly being destroyed. Also, it's been 4 days since his last thorocentesis when almost 2 liters of fluid were removed from around his left lung and he's now got about 3 inches difference in dullness to percussion again. This is the shortest interval yet in which his pleural effusion has developed.
The low platelets are Kossman's biggest concern today. It's hard to tell whether they are low from the Campath or from lymphoma in the marrow without doing a bone biopsy. But if there is active disease elsewhere it is very likely to be in the marrow as well. So, we're at a philosophical junction again. Do more Campath and risk a further plummet in platelets? Or stop Campath and watch platelets for a few days then restart treatment (risking further time with unopposed disease)? And how do we best judge the overall effectiveness of Campath?
Dr. Kossman also spoke the words "we're running out of bullets" and mentioned the drug Romidepsin as the real last resort. It is for cutaneous T cell lymphoma and maybe an orphan drug (approved for only one diagnosis) for that matter and not to be approved by insurance. It's in the $10k range per dose which, without approval or well documented studies regarding efficacy, presents a whole additional set of philosophical questions. Anyway, he told Phil he thought the disease had reduced by about 50% on Campath but was still very active and he still has significant issues with the effusions, edema, platelets, continued marrow involvement and nodes in chest, neck, axilla that aren't fully responding. He says most patients have full response by 12 weeks but that after 12 DOSES it is usual to reevaluate.
Phil chose to go on with treatment today. It is going to be a Herculean effort on his part. Tomorrow will be Ambisone. Then Dr. Kossman will see him on Wed. and recheck the CBC. Otherwise, Kossman wants to give the last 2 doses he has here in the office (IV) then re-evaluate where Phil is and where to go at that point.
And that's the update for today. I'm tired but managing. The kids are struggling and crying more often. They are sensing what is going on and are very aware of Phil's diminishing capacities. We all are and it gets more difficult to watch as the days pass. We love him and see him fighting and hope he will get better. Those of us who know him well can imagine a scenario wherein he'll never say quit. Can see the circumstances dictating the outcome for him rather than him ever crying "Uncle". Such is the way of my warrior. No surrender.
Sent from my iPad
Sent from my iPad
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