Good news so far! Dad's out of surgery and in recovery even as I type. The doctor said that there doesn't appear to be any nerve damage, and that they think the tumor is benign. Of course, they still have to send it to pathology, but from my experience the doctors are pretty good about that sort of thing. Now we are just waiting for him to get lucid enough to take home, or rather for Marla to take home. There is something I need your help with, especially those of you who know my father personally. Word on the street is that he is planning on going to work on Monday against medical advice. You know, everyone goes back to do physical labor 3 days after having a 4 hour surgery where a doctor hacks into your neck. I am encouraging anyone who knows him to give him a call or email and encourage him to take it easy. He loves barrages of people telling him what to do. Basically he's now my hostage. I will tell people to stop bugging him, as soon as he agrees to take it easy.
As for me, I had a doctor's appointment yesterday. My doctor has said that he's never seen anyone do better after a autologous stem cell transplant than me. I am way ahead of the curve, almost ridiculously so. He said that I've been a trooper, especially considering all the high dose chemo I've gotten. It's difficult and near impossible to explain to a doctor that you are pretty sure that you have had nothing to do with it, and that divine intervention probably played a much bigger role.
The last couple of weeks have been particularly difficult for me emotionally. Even in the midst of getting better, I have been trying to mentally prepare myself for getting sick again. But, as a quasi-wise man told me, there is no preparing for it, so I might as well let it go. It's hard for even me to keep out all hope as the world around me seems to be basking in new life. All of our rain here in SoCal has turned everything green. Everything I encountered yesterday seemed to be encouraging me to be optimistic. My doctor was very optimistic. I received a little sign in the mail from my aunt that said, "Good things are going to happen." So, against my human nature and all the pessimistic bones in my body, I've decided to give up preparing for the worst. I'm going to live in today and enjoy all the good things that are in it. And if the worst happens....at least I had a couple of really happy months. But today is really good.
Friday, January 23, 2009
Thursday, January 15, 2009
Now what?
I know that I haven't been blogging much lately, and as my Dad reminds me, when people have no news they assume the worst. However, that is far from the case right now. I am recovering remarkably fast, and have had most of my restrictions lifted. I had a doctor's appointment on Tuesday where she effectively told me that my counts were good enough that she didn't need to see me anymore and she booted me back to my regular oncologist. Dr. Pinter-Brown also told me I didn't need to be watched 24/7 and that I could drive. Other than that, I can't eat sushi or SoupPlantation, and I really shouldn't be in crowds or around sick people. My energy level is already probably 60% of normal, and I had my Groshang catheter removed on Tuesday which allowed for me to have the first shower I've had in over a month.
Now, it's just a waiting game. I will have a follow up pet scan in 2 months to see if the cancer is still gone. I asked the doctor what my odds were, and she said that I have 50%, maybe a little higher, odds that I will be cured. Part of the reason I don't blog is because I am afraid that I'll just end up vomiting emotional crazy all over the computer screen. I work hard to keep the worry and fear at bay all day long. I try not to let my fear of what may be consume me. It's so hard at times to relate to my friends and family because they are just getting on with their lives, and I sometimes feel that I am in a never-ending purgatory. Of course, then I feel guilty for not trusting enough and not having enough faith to trust that whatever happens, God is in control. At the moment, it is much harder living in my head than it is living in my body. It's such a feeling of helpless desperation. In my head, I constantly think of the story in Mark of the bleeding woman who just desperately tries to touch Jesus' robes, and I understand her.
On top of this, my dad is having surgery next Friday and I can't be there for him. He has a mass growing in his neck, which is most likely a gland that is growing as a tumor. The better odds are that it's benign, but there is still a chance it could be malignant. They won't know until Friday. And there are risks of the surgery because of where it is, and I am stuck here convalescing in California. I'll probably get in trouble for blogging about this, but I am so very worried. People keep telling me to stop worrying and to concentrate on my own recovery, but that's plausible as stopping breathing. Hopefully, those of you who are in Dallas can pick up the slack and be sure and check on him. Be sure and bug him a lot. He loves that.
Anyways, I need to go and run some errands. It breaks up the monotony of the day. I've been out of the hospital a week, and Justin is already assigning me task lists.
Just keep praying for us.
Now, it's just a waiting game. I will have a follow up pet scan in 2 months to see if the cancer is still gone. I asked the doctor what my odds were, and she said that I have 50%, maybe a little higher, odds that I will be cured. Part of the reason I don't blog is because I am afraid that I'll just end up vomiting emotional crazy all over the computer screen. I work hard to keep the worry and fear at bay all day long. I try not to let my fear of what may be consume me. It's so hard at times to relate to my friends and family because they are just getting on with their lives, and I sometimes feel that I am in a never-ending purgatory. Of course, then I feel guilty for not trusting enough and not having enough faith to trust that whatever happens, God is in control. At the moment, it is much harder living in my head than it is living in my body. It's such a feeling of helpless desperation. In my head, I constantly think of the story in Mark of the bleeding woman who just desperately tries to touch Jesus' robes, and I understand her.
On top of this, my dad is having surgery next Friday and I can't be there for him. He has a mass growing in his neck, which is most likely a gland that is growing as a tumor. The better odds are that it's benign, but there is still a chance it could be malignant. They won't know until Friday. And there are risks of the surgery because of where it is, and I am stuck here convalescing in California. I'll probably get in trouble for blogging about this, but I am so very worried. People keep telling me to stop worrying and to concentrate on my own recovery, but that's plausible as stopping breathing. Hopefully, those of you who are in Dallas can pick up the slack and be sure and check on him. Be sure and bug him a lot. He loves that.
Anyways, I need to go and run some errands. It breaks up the monotony of the day. I've been out of the hospital a week, and Justin is already assigning me task lists.
Just keep praying for us.
Friday, January 9, 2009
Blog Reclaimed
If I must say so myself, Justin isn't half bad at the blogging gig, even if he is a bit reticent. I'm back! Did you miss me? There is so much to say about this whole process, both good things and bad, but overall I have made the start of a very quick recovery. In fact, multiple nurses and doctors who saw me the last few days have commented about how I shouldn't feel as good as I do right now. In your face, modern medicine. Seriously, though, the road is still long and arduous. I am suffering from fatigue, which is extremely annoying. I can do a lot more than most people in my condition but it is far below my normal standard. To add insult to injury, after three weeks of eating roughly 600-800 calories a day, I only lost 6 lbs while in the hospital. Typical transplant weight loss was one of the few silver linings of this whole ordeal, but alas, in true Katie fashion I have bucked the trend. The other negative is that my taste buds have been effected, effectively being muted. Everything just tastes kind of bland, which on the upside might lead to more post-transplant weight loss. A girl can dream.
I want to thank all of you for your thoughts and prayers over the past few weeks. All kidding aside, the emotional, physical, and spiritual drain of this whole process is staggering. I am so very sick and tired of being sick and tired. But this too shall pass. Being home is the best. There is nothing better than being able to sleep the whole night unmolested by nurses. Even Justin is better than that. And it is very lovely not to have to deposit all my bodily waste into plastic basins. It is stupendous not to be hooked up to an iv.
One thing that it has awakened in me, however, is a real need to campaign for people to register to be bone marrow donors. I was very fortunate to be in a position where I could donate to myself my own stem cells for transplant, but there are many others who aren't that fortunate. As I write today, a lovely lady named Susan sits in an O.C. hospital waiting for a bone marrow transplant. She is in her early 30's and was just recently diagnosed with leukemia. Her best chance to beat this thing is to get a bone marrow transplant, but the fact is that the registry is relatively small because many people are either afraid of or unaware of how to become donors. To be in the database simply requires one to give a blood sample or a swab of your cheek. It doesn't require any bone marrow up front. I know that many of you have read about my unpleasant experiences with bone marrow samples, but it's different if you are a donor. According to the National Marrow Donor Program, "Bone marrow donation is a surgical procedure. While you receive anesthesia, doctors use special, hollow needles to withdraw liquid marrow from the back of your pelvic bones." So, when you donate you are asleep the whole time, and for a little while afterward, you are a little sore. Donating stem cells is even easier.
It's so easy to give someone else the gift of life, and I hope some of you might think of getting registered. It's easy to do; just go on the National Marrow Donor Program website, www.marrow.org. Thanks for sticking with me the past couple of weeks. I hope that the good news keeps on rolling.
I want to thank all of you for your thoughts and prayers over the past few weeks. All kidding aside, the emotional, physical, and spiritual drain of this whole process is staggering. I am so very sick and tired of being sick and tired. But this too shall pass. Being home is the best. There is nothing better than being able to sleep the whole night unmolested by nurses. Even Justin is better than that. And it is very lovely not to have to deposit all my bodily waste into plastic basins. It is stupendous not to be hooked up to an iv.
One thing that it has awakened in me, however, is a real need to campaign for people to register to be bone marrow donors. I was very fortunate to be in a position where I could donate to myself my own stem cells for transplant, but there are many others who aren't that fortunate. As I write today, a lovely lady named Susan sits in an O.C. hospital waiting for a bone marrow transplant. She is in her early 30's and was just recently diagnosed with leukemia. Her best chance to beat this thing is to get a bone marrow transplant, but the fact is that the registry is relatively small because many people are either afraid of or unaware of how to become donors. To be in the database simply requires one to give a blood sample or a swab of your cheek. It doesn't require any bone marrow up front. I know that many of you have read about my unpleasant experiences with bone marrow samples, but it's different if you are a donor. According to the National Marrow Donor Program, "Bone marrow donation is a surgical procedure. While you receive anesthesia, doctors use special, hollow needles to withdraw liquid marrow from the back of your pelvic bones." So, when you donate you are asleep the whole time, and for a little while afterward, you are a little sore. Donating stem cells is even easier.
It's so easy to give someone else the gift of life, and I hope some of you might think of getting registered. It's easy to do; just go on the National Marrow Donor Program website, www.marrow.org. Thanks for sticking with me the past couple of weeks. I hope that the good news keeps on rolling.
Katie's Home!
About noon on Tuesday, Katie woke up from a nap and her mouth and throat felt fine. Wednesday her counts were up to 0.8 (from a low of 0.13), and this morning the White Cell Count was over 2.0! The ANC was up to 1.2, so after some consultation with the team of doctors and Katie dancing a jig as we walked around the floor that morning, they decided she was well enough to send home.
Some other good news: we found out during the discharge training today that Katie is no longer on a strict low-bacteria diet. We had thought this would be something she would have to keep to for 3-6 months, but in fact the list of things she can't eat is limited to raw meat and C grade restaurants. This is all very good news.
I started this post on Thursday while Katie was sitting in traffic on her way from the Hospital, and stopped when I realized I might upset her by spilling the good news myself. But, after 2 days of begging her to post, here we are. So I think I'll acquire this blog for my own use until a time at which she decides to reclaim it. We can all think of the good reasons she hasn't posted - relearning her way around our 700 square feet after a long hiatus, learning to walk to the Kitchen for food instead of calling for room service (or hypothetically having someone call room service for her), all of these can be daunting tasks for someone in her (ahem) fragile condition. Maybe tomorrow we'll work on her relearning where the computer is and you'll possibly get an update from the source.
All jokes aside, she's doing great and feeling better each day. Some have asked whether the procedure was a success; we won't know the true results for many months to come, but we do know that it went about as well as possible, so we're trusting that the cancer is completely gone. Continuing prayers in this direction are always appreciated.
Some other good news: we found out during the discharge training today that Katie is no longer on a strict low-bacteria diet. We had thought this would be something she would have to keep to for 3-6 months, but in fact the list of things she can't eat is limited to raw meat and C grade restaurants. This is all very good news.
I started this post on Thursday while Katie was sitting in traffic on her way from the Hospital, and stopped when I realized I might upset her by spilling the good news myself. But, after 2 days of begging her to post, here we are. So I think I'll acquire this blog for my own use until a time at which she decides to reclaim it. We can all think of the good reasons she hasn't posted - relearning her way around our 700 square feet after a long hiatus, learning to walk to the Kitchen for food instead of calling for room service (or hypothetically having someone call room service for her), all of these can be daunting tasks for someone in her (ahem) fragile condition. Maybe tomorrow we'll work on her relearning where the computer is and you'll possibly get an update from the source.
All jokes aside, she's doing great and feeling better each day. Some have asked whether the procedure was a success; we won't know the true results for many months to come, but we do know that it went about as well as possible, so we're trusting that the cancer is completely gone. Continuing prayers in this direction are always appreciated.
Monday, January 5, 2009
Slow and Steady
Hi folks, Justin here. I'm sure my post won't be nearly as entertaining or inspirational as Katie's, but I thought people might like an update.
Katie's finally been feeling the full effects of the last chemotherapy over the past few days so she hasn't felt like doing much. Post chemo, she had a successful stem cell transplant on December 30, and has been recovering since. Her blood counts had a slight recovery after the transplant, but have dropped considerably since (as expected) and are now all but zero. A normal person has 5-10 billion white blood cells per liter of their blood, right now Katie has a measly 130 million. Of course the red blood cells and platelets are taking their toll too, so she's had to have a transfusion or two to keep those values to a reasonable level. This condition is likely to last anywhere from 5-10 days, at which point the counts will start to increase as her body starts to make cells once again.
Right now, the biggest issue Katie's facing are some mouth and throat sores that are making it difficult to eat or talk, and generally making her pretty uncomfortable. She's been given some medication to help out, but if you've called her and she hasn't answered it's because it's really painful to talk. I mean, we all know she likes to screen our calls, but this time she has a pretty good excuse. Over the next week or so the doctors and nurses will be watching her very closely for any signs of illness or infection as she basically has no immune system and is very susceptible during this time. They expect that she'll get at least one infection, but that's why she's there.
A number of people have asked if there's anything they can send or do. Right now we just need your prayers. Katie has a good arsenal of books and satellite TV, which is about all she feels like doing right now when she is awake. If you call, understand that we may not answer. Feel free to send emails, but know that she's only checking sporadically as she feels well enough. Right now she just wants to get through this and get on to the recovery stage at home. The timing is pretty up in the air right now and depends on how fast the counts recover (as with everything in this process, there's no room for planning), but we're hoping she can come home sometime next week. Thanks for all of your prayers.
Katie's finally been feeling the full effects of the last chemotherapy over the past few days so she hasn't felt like doing much. Post chemo, she had a successful stem cell transplant on December 30, and has been recovering since. Her blood counts had a slight recovery after the transplant, but have dropped considerably since (as expected) and are now all but zero. A normal person has 5-10 billion white blood cells per liter of their blood, right now Katie has a measly 130 million. Of course the red blood cells and platelets are taking their toll too, so she's had to have a transfusion or two to keep those values to a reasonable level. This condition is likely to last anywhere from 5-10 days, at which point the counts will start to increase as her body starts to make cells once again.
Right now, the biggest issue Katie's facing are some mouth and throat sores that are making it difficult to eat or talk, and generally making her pretty uncomfortable. She's been given some medication to help out, but if you've called her and she hasn't answered it's because it's really painful to talk. I mean, we all know she likes to screen our calls, but this time she has a pretty good excuse. Over the next week or so the doctors and nurses will be watching her very closely for any signs of illness or infection as she basically has no immune system and is very susceptible during this time. They expect that she'll get at least one infection, but that's why she's there.
A number of people have asked if there's anything they can send or do. Right now we just need your prayers. Katie has a good arsenal of books and satellite TV, which is about all she feels like doing right now when she is awake. If you call, understand that we may not answer. Feel free to send emails, but know that she's only checking sporadically as she feels well enough. Right now she just wants to get through this and get on to the recovery stage at home. The timing is pretty up in the air right now and depends on how fast the counts recover (as with everything in this process, there's no room for planning), but we're hoping she can come home sometime next week. Thanks for all of your prayers.
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