Not too long ago, I was folding laundry on the couch in the living room when I looked up and saw myself in the mirror. In that moment I didn't see myself as someone who'd had cancer and I knew that I had been given a second chance.
It was reaffirming something that I already knew, but in a way that dispelled the sadness. I wasn't going to be angry that I’d had Leukemia or worry about the 'what ifs' or 'whys'.
I had cried at least once every single day since I was diagnosed. But that day I decided that I wasn’t going to shed a single tear over it again. I had already experienced the sorrow, fear and uncertainty of cancer. I wasn’t going to continue re-living it. I was going to live. Period.
Courtney
taken 8/4/07
Courtney and her kids
taken 8/4/07
Tuesday, July 15, 2008
Tuesday, June 24, 2008
6 Months Post-Transplant
I just celebrated my 6 month post-transplant milestone with a visit to the BMT clinic to see Dr. V. Good news: I didn't have to have a bone marrow biopsy-- just lots of blood work. (Well, that's more like awesome news for just for me.) Better news: Only 3 of the 8 medications I currently take are related to the transplant. I have had almost thirty different medications since transplant. Dr. V has been slowly taking me off the Prograf-- the anti-rejection medication. I am down by 80% now with no evidence of GVHD. Best news: DNA (STR) testing continues to show that greater that 95% of my blood cells are donor cells (Tracy's cells). The lab will never report 100%-- but this is basically saying just that. My old blood cells can no longer be detected. My bone marrow transplant continues to prove successful. A TRUE MIRACLE!
Tuesday, June 17, 2008
‘Believe’ from my nurse Julie
During induction therapy, in one on my hardest hours, I deeply struggled with side effects of the chemotherapy, with pain and discomfort. I had received any and all medications possible and needed to wait almost an hour before any new drugs could be tried. My night nurse, Julie, came and she stayed with me. An oncology nurse who I knew had a lot to do and had a lot of other patients. But she came to me and stayed.
I was sitting up in bed, unable to find comfort from the pain radiating throughout my body. I was completely exhausted, just crying, when she squatted down in front of me and took my hand. All I could see of her face were her eyes because she was wearing a mask. She locked her eyes with mine and told me that I could do it. She told me that she knew I was strong enough and that I could make it through this moment. She sat there with me the entire time, talking to me, comforting me, helping me focus on other things like my breathing and never loosing contact with my eyes because she believed in me. And because she believed in me I was able to believe in myself.
She left me for only a moment so she could receive the medication that would bring relief and sleep. She stayed to watch the medication take effect. She waited for my ‘drug induced’ grin and for me to fall off to a peaceful sleep.
I couldn't have made it through that difficult time without Julie's help. These kind of experiences with people like my families, my friends, the doctors, the nurses, and techs who continually showed such love and support, and the affirmation to 'believe' really have helped me to be a stronger person. Thank you.
I was sitting up in bed, unable to find comfort from the pain radiating throughout my body. I was completely exhausted, just crying, when she squatted down in front of me and took my hand. All I could see of her face were her eyes because she was wearing a mask. She locked her eyes with mine and told me that I could do it. She told me that she knew I was strong enough and that I could make it through this moment. She sat there with me the entire time, talking to me, comforting me, helping me focus on other things like my breathing and never loosing contact with my eyes because she believed in me. And because she believed in me I was able to believe in myself.
She left me for only a moment so she could receive the medication that would bring relief and sleep. She stayed to watch the medication take effect. She waited for my ‘drug induced’ grin and for me to fall off to a peaceful sleep.
I couldn't have made it through that difficult time without Julie's help. These kind of experiences with people like my families, my friends, the doctors, the nurses, and techs who continually showed such love and support, and the affirmation to 'believe' really have helped me to be a stronger person. Thank you.
Sunday, June 1, 2008
“Oil Change”
I went to the local ‘quick car oil change’ place near our home last week. I went inside the lobby to wait. A few minutes later a woman came in and sat beside me. I smiled as she sat down.
A minute later she looks at me and asks “So did you get a bad hair cut or was it chemo?” Yeah, I know! Who asks that! I politely answered that it was chemotherapy and that I had leukemia.
She then went on to explain that her sister had cancer and had under gone chemotherapy and radiation treatment. She said that she was familiar with the “chemo hair.” So that explained her question but still who says that!
It was the first time that I had actually gone out without wearing a scarf! During our conversation, I discretely took a scarf out of my bag and put it on. Perhaps I am just not ready to show my new hair. (This picture was taken a few weeks before this incident. So my hair looks a bit longer.) I'd love to hear opinions- bad hair cut or chemo hair. I'll post the results!
A minute later she looks at me and asks “So did you get a bad hair cut or was it chemo?” Yeah, I know! Who asks that! I politely answered that it was chemotherapy and that I had leukemia.
She then went on to explain that her sister had cancer and had under gone chemotherapy and radiation treatment. She said that she was familiar with the “chemo hair.” So that explained her question but still who says that!
It was the first time that I had actually gone out without wearing a scarf! During our conversation, I discretely took a scarf out of my bag and put it on. Perhaps I am just not ready to show my new hair. (This picture was taken a few weeks before this incident. So my hair looks a bit longer.) I'd love to hear opinions- bad hair cut or chemo hair. I'll post the results!
“Why I’ve been so quite lately.”
I am sorry that I have been so quiet lately. To all my friends and family who have continued to support me and who have been part of this journey I feel that I should be completely honest with what my day to day recovery is like and how I am trying to navigate through the experience of cancer. It is now that, the part about ‘navigating’ through this, which in the recent weeks has caused me to feel overwhelmed, alone and incapable of expressing myself. So, I haven’t blogged.
I have been so blessed to share great news from my clinic visits with Dr. V. Truly my lab results have been almost perfect for months now. I have been blessed to have avoided any serious infections, problems with GVHD or significant problems with medications. I have remained in remission and my sister, Tracy’s, donor cells have engrafted perfectly. I love sharing my good news with all of you. I know that each day is a gift. It is one more day in remission and one more day closer to hearing the word “cured.”
But honestly, the recovery is incredibly slow: with constant fatigue, muscle weakness and pain that causes frustration and loneliness. All and any of these symptoms could be caused by medications, effects of the chemotherapy or emotional stress.
I find myself desperately trying to return to “normal.” What I want more than any thing is to regain control of my life. The moment I was told I had leukemia I was robbed of the life I knew. For so long I’ve been a bystander in my own life. When I’ve tried to “jump right in” I became very disappointed when it was so apparent that I wasn’t ready. I am trying to return to being a mother, which as many of you know, is an exhausting job. I find myself limited in ability and strength. I feel like I am in a constant battle with my body and so far my body wins almost every day. It is so frustrating.
Recently a friend asked me how I was doing. I thought for a moment and replied “I think I am in the ‘angry stage’.” She looked at me unsure what to make of my comment. I tried to explain that cancer is like experiencing a loss; like someone you loved is gone. And you grieve for that loss. Weird, right? I know I experienced similar feelings when I was diagnosed like ‘denial’ (this can’t be happening, I don’t have cancer) and then ‘acceptance’ (ok, let’s do this, I have faith that I will be healed). So, I think maybe I skipped the ‘anger stage’ and perhaps depression. I don’t know if that makes any sense… You would think that I would be the last person on the face of the earth to have these feelings. Yet feelings of frustrations, anger and guilt find their way into my day, my relationships and my tear ducts. And truthfully, I was caught off guard by these feelings and unsure of the ‘why now’.
I sit here in think “how in the world can I feel mad? I am in remission, Heavenly Father has blessed my life, answered my prayers and shown His endless love for me and my family.” Yet, I find myself mad that I got cancer, mad that my hair fell out, mad that I still don’t feel “great”, mad that I can’t be that mom that my children need, just plain mad. So, I don’t call my family, I don’t return friends calls and my mind is so filled with questions, thoughts and worries that I can’t sleep . How do you find your way out of that when you feel so tired and your body aches and you can’t muster the energy? Sometimes I can’t ever imagine feeling “normal” again.
Dr.V reassures me that this tiredness and muscles aches will improve as she reduces medication and she added “with time.” She tells me that my recovery is going well and not to consider these rough days a set back. The rough days will come and go she said. And then one day there won’t be rough days like this.
I have learned from other AML survivors that they also experienced similar feelings and had the same struggles. Knowing that my feelings are “normal” and finding comfort, encouragement and support has allowed me to be more open with family, friends and Dr. V. I have chosen to see a cancer therapist, whose experience has been with patients of blood cancers and those that have received transplants.
This is where I am. This was why I struggled so much to blog. This is where I will learn to be healed- physically and emotionally. I know that I do not do this alone. Thank you for the continued encouragement and prayers. This is where I find inspiration- through you.
I have been so blessed to share great news from my clinic visits with Dr. V. Truly my lab results have been almost perfect for months now. I have been blessed to have avoided any serious infections, problems with GVHD or significant problems with medications. I have remained in remission and my sister, Tracy’s, donor cells have engrafted perfectly. I love sharing my good news with all of you. I know that each day is a gift. It is one more day in remission and one more day closer to hearing the word “cured.”
But honestly, the recovery is incredibly slow: with constant fatigue, muscle weakness and pain that causes frustration and loneliness. All and any of these symptoms could be caused by medications, effects of the chemotherapy or emotional stress.
I find myself desperately trying to return to “normal.” What I want more than any thing is to regain control of my life. The moment I was told I had leukemia I was robbed of the life I knew. For so long I’ve been a bystander in my own life. When I’ve tried to “jump right in” I became very disappointed when it was so apparent that I wasn’t ready. I am trying to return to being a mother, which as many of you know, is an exhausting job. I find myself limited in ability and strength. I feel like I am in a constant battle with my body and so far my body wins almost every day. It is so frustrating.
Recently a friend asked me how I was doing. I thought for a moment and replied “I think I am in the ‘angry stage’.” She looked at me unsure what to make of my comment. I tried to explain that cancer is like experiencing a loss; like someone you loved is gone. And you grieve for that loss. Weird, right? I know I experienced similar feelings when I was diagnosed like ‘denial’ (this can’t be happening, I don’t have cancer) and then ‘acceptance’ (ok, let’s do this, I have faith that I will be healed). So, I think maybe I skipped the ‘anger stage’ and perhaps depression. I don’t know if that makes any sense… You would think that I would be the last person on the face of the earth to have these feelings. Yet feelings of frustrations, anger and guilt find their way into my day, my relationships and my tear ducts. And truthfully, I was caught off guard by these feelings and unsure of the ‘why now’.
I sit here in think “how in the world can I feel mad? I am in remission, Heavenly Father has blessed my life, answered my prayers and shown His endless love for me and my family.” Yet, I find myself mad that I got cancer, mad that my hair fell out, mad that I still don’t feel “great”, mad that I can’t be that mom that my children need, just plain mad. So, I don’t call my family, I don’t return friends calls and my mind is so filled with questions, thoughts and worries that I can’t sleep . How do you find your way out of that when you feel so tired and your body aches and you can’t muster the energy? Sometimes I can’t ever imagine feeling “normal” again.
Dr.V reassures me that this tiredness and muscles aches will improve as she reduces medication and she added “with time.” She tells me that my recovery is going well and not to consider these rough days a set back. The rough days will come and go she said. And then one day there won’t be rough days like this.
I have learned from other AML survivors that they also experienced similar feelings and had the same struggles. Knowing that my feelings are “normal” and finding comfort, encouragement and support has allowed me to be more open with family, friends and Dr. V. I have chosen to see a cancer therapist, whose experience has been with patients of blood cancers and those that have received transplants.
This is where I am. This was why I struggled so much to blog. This is where I will learn to be healed- physically and emotionally. I know that I do not do this alone. Thank you for the continued encouragement and prayers. This is where I find inspiration- through you.
Tuesday, May 13, 2008
Have you ever seen a Neostar?
I forgot that I had Todd take this picture of me with the newly removed Neostar. I am holding it so you can kind of see how it worked. Only the bottom part with the three tubes was visible. The rest of the tubing was tunnled through a vein to my heart. I still can't believe that was in my chest for over 3 months! Yes, it is clean! Yes, I disposed of it after we took the pictures. What a happy day for me to share (sorry it took so long--I had it taken out back in March!) But a very happy day!
Wednesday, May 7, 2008
Clinic Visits- April 17, 2008 and May 1, 2008
I have had two clinic visits since I last posted. A lot can change in just two visits!
Thursday, April 17, 2008
My friend, Michelle, accompanied me on Thursday, April 17. Michelle is a great friend (and I am so blessed so have so many of them) and she is always so practical and pragmatic that she won’t let me worry about the “what ifs”. (Thanks, Michelle)
I can’t tell you how much I enjoy having company with me during clinic visits. Well, first off, I probably shouldn’t be driving myself because certain medications “may effect” response times (the roads are safer without me behind the wheel). Second, while I’ve been getting great news at almost every visit since February, I still like having the comfort of having someone with me (it’s that one brain cell that runs around my head worrying about the “what ifs”). Third, and most importantly, I love spending time with my friends (many of whom I haven’t been able to visit with because of the crappy cancer thing).
Again, I was fortunate for only one stick for the blood draw. I think being warmer and drinking more water beforehand helps. We got back to an exam room pretty quickly. Maybe time just passed faster chatting with Michelle. Anyway, vitals were good and all my labs looked great. I really need to take a picture of Dr. V’s smile—it’s the best!
I always hate having to mention any unusual symptoms to her because it’s always an “Uh-oh” kind-of thing. Just the night before, I started having a sore throat. I really hate sore throats now because that was the one major symptom I had when I was diagnosed in September. A look with a flash light revealed that I had developed a case of oral thrush. Yeah, I know. Oral thrush (a type of yeast infection).
Three of our four kids developed thrush while nursing. It is not pleasant as a nursing mom either! The kids were always treated with this yucky yellow Nyastatin suspension like 4-5 times a day where I had to use a dropper to wash the insides of their cheeks. I always had to be treated with some topical antifungal medication too. It was always a huge pain to treat because if not 100% treated it just keeps coming back. I feel just plain awful for babies that get oral thrush. It really is unpleasant! Dr. V prescribed oral antifungal tablets, Clotrimazole, to take 5 times a day. The tablets had to dissolve slowly under the tongue (like over 30-40 minutes) and tasted weird.
We’ve probably mentioned before how my immune system isn’t fully functional. Much like an infant, I am susceptible to many common infections that can cause more serious complications. Fortunately, thrush isn’t life threatening but its appearance is a visible sign that I still don’t have a normal functioning immune system. The regime of chemotherapy for a bone marrow transplant had two specific jobs: to wipe out the bone marrow (the source of my cancer) and to destroy (erase) my immune system. The doctors only want to fight one battle: the DONOR cells attacking MY body. The second battle being MY body attacking the DONOR cells that will become the new (cancer free) blood source. Anyways, if you’d really like to learn about your immune system and how it works go to: http://www.howstuffworks.com/immune-system.htm. Sorry for getting side tracked and rambling on about that (but it explains why the recovery from an allogeneic transplant takes so long.) I have to “grow” a new immune system (and even get re-immunized later).
So, back my visit with Dr. V… Dr. V finished the visit with saying “see you in a month!” Whoa! A month?! Wow!
(Oh yeah, I forgot to mention I had a chest x-ray, too. Initial report is clear).
But, alas, a month’s wait was not meant to be. As I’ve mentioned before, I do not tolerate medications in the “–azole” family (anti-fungals). So, taking the fluconazole with the clotrimazole (for the oral thrush) really wiped me out. I really started feeling sick again with nausea. I also started having joint pain in my hands, knees and ankles. So back to the clinic I went.
Thursday, May 1, 2008
Todd was able to go with me to this visit. I have always hated long visits but the longer they end up being is just more time that we can spend together. (And, no, I don’t make up symptoms just so I can be with Todd—it’s just a bonus).
Anyway, labs revealed that I was slightly anemic again (caused by certain medications that suppress RBC production). No problems with the insurance company this time and I got a shot of Arenesp. Dr.V also said that my symptoms aren’t related to GVHD (chronic) which would be reflected in certain lab work and she just didn’t see it. We went through my list of medications and my complaints. She decided that any benefit from several medications that often cause these side effects weren’t worth it. The result is I no longer have to take Lipitor (high cholesterol), Norsvasc (hyper-tension), Clotrimazole (thrush—which had cleared up), Fluconazole (prophylactic anti-fungal and Prograf stabilizer) and Entocort (GI steroid). Whoa! The hope is that a lot of my crummy symptoms will subside and she’ll start weaning the Prograf dose. Right now, getting off the steroid and reducing the Prograf is really important.
I’ll be back in clinic in two weeks. Hopefully, with more good news!
Thursday, April 17, 2008
My friend, Michelle, accompanied me on Thursday, April 17. Michelle is a great friend (and I am so blessed so have so many of them) and she is always so practical and pragmatic that she won’t let me worry about the “what ifs”. (Thanks, Michelle)
I can’t tell you how much I enjoy having company with me during clinic visits. Well, first off, I probably shouldn’t be driving myself because certain medications “may effect” response times (the roads are safer without me behind the wheel). Second, while I’ve been getting great news at almost every visit since February, I still like having the comfort of having someone with me (it’s that one brain cell that runs around my head worrying about the “what ifs”). Third, and most importantly, I love spending time with my friends (many of whom I haven’t been able to visit with because of the crappy cancer thing).
Again, I was fortunate for only one stick for the blood draw. I think being warmer and drinking more water beforehand helps. We got back to an exam room pretty quickly. Maybe time just passed faster chatting with Michelle. Anyway, vitals were good and all my labs looked great. I really need to take a picture of Dr. V’s smile—it’s the best!
I always hate having to mention any unusual symptoms to her because it’s always an “Uh-oh” kind-of thing. Just the night before, I started having a sore throat. I really hate sore throats now because that was the one major symptom I had when I was diagnosed in September. A look with a flash light revealed that I had developed a case of oral thrush. Yeah, I know. Oral thrush (a type of yeast infection).
Three of our four kids developed thrush while nursing. It is not pleasant as a nursing mom either! The kids were always treated with this yucky yellow Nyastatin suspension like 4-5 times a day where I had to use a dropper to wash the insides of their cheeks. I always had to be treated with some topical antifungal medication too. It was always a huge pain to treat because if not 100% treated it just keeps coming back. I feel just plain awful for babies that get oral thrush. It really is unpleasant! Dr. V prescribed oral antifungal tablets, Clotrimazole, to take 5 times a day. The tablets had to dissolve slowly under the tongue (like over 30-40 minutes) and tasted weird.
We’ve probably mentioned before how my immune system isn’t fully functional. Much like an infant, I am susceptible to many common infections that can cause more serious complications. Fortunately, thrush isn’t life threatening but its appearance is a visible sign that I still don’t have a normal functioning immune system. The regime of chemotherapy for a bone marrow transplant had two specific jobs: to wipe out the bone marrow (the source of my cancer) and to destroy (erase) my immune system. The doctors only want to fight one battle: the DONOR cells attacking MY body. The second battle being MY body attacking the DONOR cells that will become the new (cancer free) blood source. Anyways, if you’d really like to learn about your immune system and how it works go to: http://www.howstuffworks.com/immune-system.htm. Sorry for getting side tracked and rambling on about that (but it explains why the recovery from an allogeneic transplant takes so long.) I have to “grow” a new immune system (and even get re-immunized later).
So, back my visit with Dr. V… Dr. V finished the visit with saying “see you in a month!” Whoa! A month?! Wow!
(Oh yeah, I forgot to mention I had a chest x-ray, too. Initial report is clear).
But, alas, a month’s wait was not meant to be. As I’ve mentioned before, I do not tolerate medications in the “–azole” family (anti-fungals). So, taking the fluconazole with the clotrimazole (for the oral thrush) really wiped me out. I really started feeling sick again with nausea. I also started having joint pain in my hands, knees and ankles. So back to the clinic I went.
Thursday, May 1, 2008
Todd was able to go with me to this visit. I have always hated long visits but the longer they end up being is just more time that we can spend together. (And, no, I don’t make up symptoms just so I can be with Todd—it’s just a bonus).
Anyway, labs revealed that I was slightly anemic again (caused by certain medications that suppress RBC production). No problems with the insurance company this time and I got a shot of Arenesp. Dr.V also said that my symptoms aren’t related to GVHD (chronic) which would be reflected in certain lab work and she just didn’t see it. We went through my list of medications and my complaints. She decided that any benefit from several medications that often cause these side effects weren’t worth it. The result is I no longer have to take Lipitor (high cholesterol), Norsvasc (hyper-tension), Clotrimazole (thrush—which had cleared up), Fluconazole (prophylactic anti-fungal and Prograf stabilizer) and Entocort (GI steroid). Whoa! The hope is that a lot of my crummy symptoms will subside and she’ll start weaning the Prograf dose. Right now, getting off the steroid and reducing the Prograf is really important.
I’ll be back in clinic in two weeks. Hopefully, with more good news!
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