No news is good news at this point. I continue doing very well. My headache is staying mild. It is very hard to not overdo it, and it doesn't take so much for me to overdo it! But I am enjoying "normal" life things. This morning, I was able to attend an event that Kylie participated in with a solo violin piece that was judged. What a blessing to just do some of these things! I did a few things the rest of the day in the house, but am really quite exhausted. It seems like I can pick out one "bigger" thing for the day to do, then I have to lay low the rest of the time.
I continue to be amazed at how well I am doing! I can tolerate more noise than I have in some time. I feel like the "real me" is back. I hope I stay around for a while! :)
Saturday, March 31, 2012
Wednesday, March 28, 2012
Wednesday
Today has been another good day. I am just about giddy experiencing life with a mild headache. What freedom that gives! My strength is slow in returning, but I am making progress. Today I spent most of the morning in the office and I did pretty well. I will continue to move slowly and take things one day at a time. It has been about 4 weeks since the most recent of the surgeries.
Monday, March 26, 2012
Monday
I am thankful that I have made a few more accomplishments! Today I spent a couple hours at the office this morning and I went to the grocery store with Kyle tonight for the first time in a long while! These seem like tiny steps, but they are steps in the right direction. Saturday I had a marathon day, going to S. City to do a little bit of very needed shopping for the kids. Kyle and I went with three of the kids and we were able to hit two stores and get what was sorely needed. Even feeling really good this would be an accomplishment and so I was pretty happy that we were able to get some of this done.
This afternoon I spent a few minutes looking back at the posts that were made on this blog for the end of February and March. Things were looking so difficult and I was having a hard time bracing for a very miserable 8 weeks without the shunt. What an answer to prayer that I am doing so well! I have so much to be thankful for!
This afternoon I spent a few minutes looking back at the posts that were made on this blog for the end of February and March. Things were looking so difficult and I was having a hard time bracing for a very miserable 8 weeks without the shunt. What an answer to prayer that I am doing so well! I have so much to be thankful for!
Sunday, March 25, 2012
Sunday
A great day! I was able to attend church twice today and that was wonderful! What a blessing to have that opportunity.
My head continues to do pretty well overall. I still have a headache and the sensitivities, but not nearly to the extent that I have had in the past. I can tell that I have a little ways to go mentally, but that is coming as well. My eating is back to my normal, which is nice! I still have to be careful but that has been the case since having pancreatitis and I don't think that will change. My head hasn't fully adjusted to not having a shunt or maybe it is just a problem that I will always have, but if I stand from sitting or laying I almost have a short dizzy spell that resolves pretty quickly. I have to be careful, though, because if I move to quickly things will go black on me even though it isn't a faint. Hopefully that will gradually improve.
I have so much to be thankful for and I continue to be thankful for the support shown to our family.
My head continues to do pretty well overall. I still have a headache and the sensitivities, but not nearly to the extent that I have had in the past. I can tell that I have a little ways to go mentally, but that is coming as well. My eating is back to my normal, which is nice! I still have to be careful but that has been the case since having pancreatitis and I don't think that will change. My head hasn't fully adjusted to not having a shunt or maybe it is just a problem that I will always have, but if I stand from sitting or laying I almost have a short dizzy spell that resolves pretty quickly. I have to be careful, though, because if I move to quickly things will go black on me even though it isn't a faint. Hopefully that will gradually improve.
I have so much to be thankful for and I continue to be thankful for the support shown to our family.
Thursday, March 22, 2012
Thursday
We continue to shed a few tears and talk about what an amazing experience the tip night was Tuesday evening. We weren't sure how to handle things when we found out that this was planned and advertised before we knew about it. We have found that it is easier for us being the giver than the receiver but we were so blessed by receiving and I thank everyone for that!
A special thanks to my sister, Tami, for surprising us with this! Thank you to our families, youth group and youth group sponsors, Hinton folks and many others for working so hard at the Pizza Ranch that night! Thank you to so many that came--this event broke a record at the local Pizza Ranch for a tip night attendance! Thanks to those who couldn't come but showed their support anyway. We thank everyone that has prayed for us, encouraged us, helped with our kids, brought us meals and so many other ways of showing their love and support. This journey would be so much more difficult without our Christian community surrounding us.
Today I finally talked to the oncologist office at Johns Hopkins. As I feared, their plan was to do the ultrasound and have an appointment with me but if needed, the surgery wouldn't occur for two weeks or so. I decided and they concurred that I will have the ultrasound done here and then will send it to them. They will review the results and determine if surgery is necessary. If it is, the surgery will be scheduled and I will fly out there to have that done. The ultrasound will be done mid-April.
A special thanks to my sister, Tami, for surprising us with this! Thank you to our families, youth group and youth group sponsors, Hinton folks and many others for working so hard at the Pizza Ranch that night! Thank you to so many that came--this event broke a record at the local Pizza Ranch for a tip night attendance! Thanks to those who couldn't come but showed their support anyway. We thank everyone that has prayed for us, encouraged us, helped with our kids, brought us meals and so many other ways of showing their love and support. This journey would be so much more difficult without our Christian community surrounding us.
Today I finally talked to the oncologist office at Johns Hopkins. As I feared, their plan was to do the ultrasound and have an appointment with me but if needed, the surgery wouldn't occur for two weeks or so. I decided and they concurred that I will have the ultrasound done here and then will send it to them. They will review the results and determine if surgery is necessary. If it is, the surgery will be scheduled and I will fly out there to have that done. The ultrasound will be done mid-April.
Wednesday, March 21, 2012
Amazing
This is precious! Thank you Nicole!
I have been delaying writing this blog post. How do we say thank you? I really don't think that anything that I can write or do would ever be sufficient to express our thanks and amazement at the overwhelming support and love shown last night at the tip night. I will readily admit that I have shed many tears about this entire tip night event.
First, when I found out that it was happening I had a hard time talking about it to anyone because I didn't expect it and was surprised that so many wanted to do this for us. Now I am even more overwhelmed after seeing a huge crowd of people come on our behalf. I have felt so lonely many times while struggling with this and I now know that I am not on my own. Thank you for such a precious gift. I will never forget this. Ever.
Jeremiah 31:13b
I will turn their mourning into joy;
I will comfort them, and give them
gladness for sorrow.
Psalm 13: 1, 5 & 6
How long, O Lord? Will you forget me forever?
How long will you hide your face from me?
But I have trusted in your steadfast love;
my heart shall rejoice in your salvation.
I will sing to the Lord,
because He has dealt bountifully with me.
Monday, March 19, 2012
Monday
The reality of family life hit hard today! Tara had a doctor appointment first thing this morning which Kyle & I both went to and then Tanner had an appointment with a specialist for more foot problems that ended up taking about 3 hours--mostly waiting time. I went with Tanner as well, which was exhausting even though I did nothing. Today is laundry day(s). Oh, my.
Tomorrow night is the Pizza Ranch tip night. We are so humbled that my family surprised us with this event. The additional expenses have been high with two plane tickets each time, often purchased last minute, hotel rooms, etc. But I think beyond the financial assistance it means so much to us to know that people care about us and that they are prayerfully and thoughtfully supporting us. So many blessings received during the hard times of life.
Tomorrow night is the Pizza Ranch tip night. We are so humbled that my family surprised us with this event. The additional expenses have been high with two plane tickets each time, often purchased last minute, hotel rooms, etc. But I think beyond the financial assistance it means so much to us to know that people care about us and that they are prayerfully and thoughtfully supporting us. So many blessings received during the hard times of life.
Sunday, March 18, 2012
Have a blessed Sunday
I made it to the musical all three nights! In all honesty, the last night was pushing it a little but I made it. What a joy! What a hard working, talented group of kids and teachers to pull off that musical and to perform it so well! Wow!
This morning I was still paying for the activity of the previous evening so I didn't make it to church, but I had the privilege tonight. Pacing myself is a difficult thing because I want to do everything and my body isn't following along. Not surprising, but another lesson in patience for me.
On a lighter note, I counted the number of fresh incisions I have right now and there are 8. Three on my head, one near my collarbone and four small ones on my abdomen. Pretty pathetic that I had to count them. My hair is starting to grow in although it is only like 2 or 3 millimeters long. I have a long ways to go on that! Having hair is one of the things that I have learned is a minor part of life. Having a bald head does tend to attract some interesting looks, though! I am wearing a scarf or cap when I am out of the house at this point. I have learned that there are many things much more important than hair. My priorities have certainly changed.
This morning I was still paying for the activity of the previous evening so I didn't make it to church, but I had the privilege tonight. Pacing myself is a difficult thing because I want to do everything and my body isn't following along. Not surprising, but another lesson in patience for me.
On a lighter note, I counted the number of fresh incisions I have right now and there are 8. Three on my head, one near my collarbone and four small ones on my abdomen. Pretty pathetic that I had to count them. My hair is starting to grow in although it is only like 2 or 3 millimeters long. I have a long ways to go on that! Having hair is one of the things that I have learned is a minor part of life. Having a bald head does tend to attract some interesting looks, though! I am wearing a scarf or cap when I am out of the house at this point. I have learned that there are many things much more important than hair. My priorities have certainly changed.
Friday, March 16, 2012
Friday
I have so much to be thankful for! Yesterday I thought about what I should write about on this blog, but I was a little overwhelmed and for once :) short on words. How can I express our thankfulness for the love and care of so very many shown to our family? I just don't know, and words don't cover it. Tears have run down my face so many times as I am shown one kindness after another. Thank you!
Being home is such a blessing and wonderful. As usual and as expected, it is quite overwhelming again but I have experienced this many times and know that it is just a process and it will get better. Last night I had the privilege of watching the musical presented by our high school I can't even express how much it meant to me to be there! Everyone did such a fabulous job! What a bunch of talented kids! They presented the Music Man and Tanner was part of the barbershop quartet and Kylie played her violin since it was all presented with live music. I am so proud of my kids and of everyone part of that endeavor! It was impressive!
My plan today is to take it very easy, take a nap this afternoon and try to go again tonight. Last night went pretty well. I wore my earplugs during almost all of it, but it was amazingly doable. A few months ago I wouldn't have been able to tolerate the level of sound and I did last night so that is a great sign.
There are a lot of questions about the shunt and if it will need to go back in. At this point, our hope and prayer is that I can live without it. Doing as well as I am right now without the shunt is truly an answer to prayer. In December when the tubing was externalized my pressure was to high 24 hours later. Then when it was externalized again in SC they shut it off blindly--meaning I didn't know if it was off or on and within a few hours I didn't feel good and knew that it was off, which they confirmed. This time when it was taken out I didn't have that happen. I don't have a medical explanation for that or that the recent spinal tap a week later was normal. When I contrast the last few months with the shunt on and off with the period of time when the shunts were put in originally it is amazing. At that time when the shunts became obstructed I was not functional. I had a difficult time even being home in my bedroom with the door shut and handling the kids talking in the next room. What an answer to prayer!
Overall I have a ways to go. My head isn't perfect but it is tolerable. I am very weak and physically worn down after having these 5 surgeries in the last 2-3 months. But I have a great deal to be thankful for and will continue just taking one day at a time and appreciating each good day that I am given.
Being home is such a blessing and wonderful. As usual and as expected, it is quite overwhelming again but I have experienced this many times and know that it is just a process and it will get better. Last night I had the privilege of watching the musical presented by our high school I can't even express how much it meant to me to be there! Everyone did such a fabulous job! What a bunch of talented kids! They presented the Music Man and Tanner was part of the barbershop quartet and Kylie played her violin since it was all presented with live music. I am so proud of my kids and of everyone part of that endeavor! It was impressive!
My plan today is to take it very easy, take a nap this afternoon and try to go again tonight. Last night went pretty well. I wore my earplugs during almost all of it, but it was amazingly doable. A few months ago I wouldn't have been able to tolerate the level of sound and I did last night so that is a great sign.
There are a lot of questions about the shunt and if it will need to go back in. At this point, our hope and prayer is that I can live without it. Doing as well as I am right now without the shunt is truly an answer to prayer. In December when the tubing was externalized my pressure was to high 24 hours later. Then when it was externalized again in SC they shut it off blindly--meaning I didn't know if it was off or on and within a few hours I didn't feel good and knew that it was off, which they confirmed. This time when it was taken out I didn't have that happen. I don't have a medical explanation for that or that the recent spinal tap a week later was normal. When I contrast the last few months with the shunt on and off with the period of time when the shunts were put in originally it is amazing. At that time when the shunts became obstructed I was not functional. I had a difficult time even being home in my bedroom with the door shut and handling the kids talking in the next room. What an answer to prayer!
Overall I have a ways to go. My head isn't perfect but it is tolerable. I am very weak and physically worn down after having these 5 surgeries in the last 2-3 months. But I have a great deal to be thankful for and will continue just taking one day at a time and appreciating each good day that I am given.
Wednesday, March 14, 2012
Wednesday
I am home! What a blessing! The trip went well but was more exhausting than I anticipated. It seems like when I am in a quiet room with a very controlled environment I did fairly well. It is entirely different being home with four kids and a husband! There has always been a period of adjustment to being home and in the middle of a busy household, and that is happening again. I knew it was coming but it is impossible to be prepared. But what a blessing to be here!
Tuesday, March 13, 2012
Tuesday
A couple of days ago I was lamenting about not being home for the musical, for Kylie's birthday, etc. The Lord has been so good to me! We are flying home tomorrow, on Kylie's birthday. What a surprise from what our expectation was!
I continue to do pretty good. Yesterday a neurologist that I saw here in June called me and recommended doubling the medication that I have been taking in hopes of helping to control the constant headache. I am really hoping that it will keep things tolerable but he said to call him if it wasn't controlled well enough. My abdomen continues to ache but it is definitely much more doable than the head pain can be. Today my head hurts a little bit more, but still tolerable.
Ultimately, I am just so hopeful that this may be near the end of so many health struggles. I will have to have the mass removed in 6 weeks if it is still there, but that will probably be same day surgery and that might be it! That almost seems to be to good to be true but I so hope that it is! It has been nearly 6 years that I have been struggling with my head.
I continue to do pretty good. Yesterday a neurologist that I saw here in June called me and recommended doubling the medication that I have been taking in hopes of helping to control the constant headache. I am really hoping that it will keep things tolerable but he said to call him if it wasn't controlled well enough. My abdomen continues to ache but it is definitely much more doable than the head pain can be. Today my head hurts a little bit more, but still tolerable.
Ultimately, I am just so hopeful that this may be near the end of so many health struggles. I will have to have the mass removed in 6 weeks if it is still there, but that will probably be same day surgery and that might be it! That almost seems to be to good to be true but I so hope that it is! It has been nearly 6 years that I have been struggling with my head.
Monday, March 12, 2012
Monday
Oh, happy day! We saw the gynecological oncologist this morning. He feels that it might go away! The blood test showed the cancer marker as negative, and that is 85% accurate. I don't have that cancer in my family history, which is another plus. So he felt very safe in waiting to do anything. They want me to come back in 6 weeks to do another ultrasound and see what this mass has done. If it is still there, I may have to have it removed. He is hoping that it might be gone! We have so much to be thankful for!
The Lord always answers prayers, and I know that. I was afraid the answer may once again be no. We are so very thankful that the answer was yes this time! It appears at this point that I may be walking toward health!
The Lord always answers prayers, and I know that. I was afraid the answer may once again be no. We are so very thankful that the answer was yes this time! It appears at this point that I may be walking toward health!
Sunday, March 11, 2012
Sunday
Today has been another relatively good day. The emotions of being here yet for another undetermined length of time is hitting me harder today. I so desperately have wanted to be home this week and now that is looking more questionable. Kylie's birthday is on Wednesday, so hers will be the second birthday I will miss on this trip. Tanner & Kylie are involved in the musical this weekend and it just kills me to think about missing that. The privilege of attending my children's events have been few it seems the last years and that just breaks my heart. This is a big one and I have been so determined to be home! Please pray that it may still be possible.
I have been doing some reading and it sounds like a biopsy would probably be performed during surgery and they would determine the results within 30 minutes and then proceed with the necessary surgical procedures based on the findings. If it is benign, it may be possible that it is same day surgery although my body is weak and worn so that may not be quite as likely for me. We are praying diligently that this is not cancer and that I may be allowed to begin recovering my strength and resume life with my family.
Please pray for my dear family. Kyle has been such a loving and supportive husband, but he is overwhelmed and has his hands very full. Our kids are doing okay as having mom in the hospital, having surgeries, etc., has become rather normal in their young lives. But they are struggling and really need to have their mom active in their lives. One of the kids has been particularly affected in many ways and needs a little more stability with my presence than getting. These things are so hard and complicated. My parents are separated with my mom here and my dad alone. My continuing illness has taken a toll on both Kyle and my families in many ways with much help coming from all. I so long for health and normalcy for Kyle and I, our kids and our families.
I am spending another Sunday away from home. We spent a quiet day, listened to a couple sermons and sat outside in the sun. We had the joy of having Harry, Dori and Jess visit this afternoon. Such a blessing.
We have also been blessed with the friendship of a young man from Saudi Arabia here treating for a severe lupus. He has visited and been so kind, even walking with us to the market yesterday to get a few groceries. It is so nice to have someone right here that cares about us, visits with us and is so willing to help when we need it! Please pray for him as he undergoes chemo again tomorrow.
Someone will write tomorrow after we find out more about the path we will be taking. A blood test was done at the ER that is 85% accurate in determining ovarian cancer, so we hope to find out the result of that tomorrow as well as finding out if/when I will have surgery. I appreciate your prayers on behalf of my family and I!
I have been doing some reading and it sounds like a biopsy would probably be performed during surgery and they would determine the results within 30 minutes and then proceed with the necessary surgical procedures based on the findings. If it is benign, it may be possible that it is same day surgery although my body is weak and worn so that may not be quite as likely for me. We are praying diligently that this is not cancer and that I may be allowed to begin recovering my strength and resume life with my family.
Please pray for my dear family. Kyle has been such a loving and supportive husband, but he is overwhelmed and has his hands very full. Our kids are doing okay as having mom in the hospital, having surgeries, etc., has become rather normal in their young lives. But they are struggling and really need to have their mom active in their lives. One of the kids has been particularly affected in many ways and needs a little more stability with my presence than getting. These things are so hard and complicated. My parents are separated with my mom here and my dad alone. My continuing illness has taken a toll on both Kyle and my families in many ways with much help coming from all. I so long for health and normalcy for Kyle and I, our kids and our families.
I am spending another Sunday away from home. We spent a quiet day, listened to a couple sermons and sat outside in the sun. We had the joy of having Harry, Dori and Jess visit this afternoon. Such a blessing.
We have also been blessed with the friendship of a young man from Saudi Arabia here treating for a severe lupus. He has visited and been so kind, even walking with us to the market yesterday to get a few groceries. It is so nice to have someone right here that cares about us, visits with us and is so willing to help when we need it! Please pray for him as he undergoes chemo again tomorrow.
Someone will write tomorrow after we find out more about the path we will be taking. A blood test was done at the ER that is 85% accurate in determining ovarian cancer, so we hope to find out the result of that tomorrow as well as finding out if/when I will have surgery. I appreciate your prayers on behalf of my family and I!
Saturday, March 10, 2012
Saturday
Yesterday was such a good day! I seem to experience a residual effect from the Toradol shots that makes my head feel clear and good and it lasted all day yesterday! Today is still good, but not as good and I can feel the headache gradually increasing.
We are spending a relaxing weekend here. Our only hope today is to get a few groceries to tide us over a little while again. My goal is to just continue gaining strength for what is ahead.
It sounds like I will have to have surgery to remove this mass regardless of whether it is cancerous or not. If it is benign, the surgery will be smaller than if it is malignant. The ER made it sound like that would happen fairly quickly. The irony of all of this is that I just had a female physical in January and it wasn't noticed. Then I had the ct scan the end of January where it showed up but the doctors didn't mention it. I am thankful to be here where they didn't blow it off. According to the ct scan in January, the mass was about 4 cm and it is now 5-6 cm, so it has grown. It is considered a complex cyst which makes it more concerning than the typical ovarian cyst. The doctors were serious about it so I am not blowing it off but just choosing not to worry about it right now. I suspect that the pain was worse when the shunt was in because the tubing was hitting it and causing some strong pain. Now I would consider my abdomen uncomfortable but definitely tolerable. Every once it a while, I will have a really sharp pain in the left side that lasts 30 seconds or so but then it melts away. I notice it the most when I have to lift my left leg--that hurts. So getting dressed or putting on socks and shoes, for example, can be more painful.
We are spending a relaxing weekend here. Our only hope today is to get a few groceries to tide us over a little while again. My goal is to just continue gaining strength for what is ahead.
It sounds like I will have to have surgery to remove this mass regardless of whether it is cancerous or not. If it is benign, the surgery will be smaller than if it is malignant. The ER made it sound like that would happen fairly quickly. The irony of all of this is that I just had a female physical in January and it wasn't noticed. Then I had the ct scan the end of January where it showed up but the doctors didn't mention it. I am thankful to be here where they didn't blow it off. According to the ct scan in January, the mass was about 4 cm and it is now 5-6 cm, so it has grown. It is considered a complex cyst which makes it more concerning than the typical ovarian cyst. The doctors were serious about it so I am not blowing it off but just choosing not to worry about it right now. I suspect that the pain was worse when the shunt was in because the tubing was hitting it and causing some strong pain. Now I would consider my abdomen uncomfortable but definitely tolerable. Every once it a while, I will have a really sharp pain in the left side that lasts 30 seconds or so but then it melts away. I notice it the most when I have to lift my left leg--that hurts. So getting dressed or putting on socks and shoes, for example, can be more painful.
Friday, March 9, 2012
Friday by Cindy
Well, Johns Hopkins is a great hospital, has great doctors, nurses and staff, but we found their emergency room a bit frustrating! We were there for 14 hours and were able to crawl into bed last night at 4 am. Exhaustion!
The findings are not all that encouraging but far from definitive at this point. I have an appointment with a Gynecologist/Oncologist Monday morning at 8:30. They did some blood work and an ultrasound and gave me an iv during those 14 hours. Efficiency isn't the name of the game in an ER!
The primary concern is a mass on my ovary that is large and complex and that has probably what has given me the abdominal pain all this time. It actually was documented on the ct scan in SCity hospital when I was there a few weeks ago but the didn't say anything about it to us but my neurosurgeon found it on the report. It has grown since then. Less pressing is a much smaller separate nodule that we know much less about and seems to be not as pressing but is a concern.
Honestly, I am not hugely concerned at this point. I have dealt with so much and maybe I can't fathom having something else added to it or maybe I am just an illogical optimist. Whatever it is, I am just taking it a step at a time and we will deal with things as they come. The positive is that they gave me a Toradol shot in the ER which typically has a positive impact on my head. I was pretty miserable yesterday and am feeling pretty good this morning despite little sleep! I am sure it will hit me soon and I will sleep a few hours this afternoon. We are waiting for a consult with a headache specialist here to see if there is a way to manage the headaches without shunts since it is looking like that chapter of my life may be done! :)
The findings are not all that encouraging but far from definitive at this point. I have an appointment with a Gynecologist/Oncologist Monday morning at 8:30. They did some blood work and an ultrasound and gave me an iv during those 14 hours. Efficiency isn't the name of the game in an ER!
The primary concern is a mass on my ovary that is large and complex and that has probably what has given me the abdominal pain all this time. It actually was documented on the ct scan in SCity hospital when I was there a few weeks ago but the didn't say anything about it to us but my neurosurgeon found it on the report. It has grown since then. Less pressing is a much smaller separate nodule that we know much less about and seems to be not as pressing but is a concern.
Honestly, I am not hugely concerned at this point. I have dealt with so much and maybe I can't fathom having something else added to it or maybe I am just an illogical optimist. Whatever it is, I am just taking it a step at a time and we will deal with things as they come. The positive is that they gave me a Toradol shot in the ER which typically has a positive impact on my head. I was pretty miserable yesterday and am feeling pretty good this morning despite little sleep! I am sure it will hit me soon and I will sleep a few hours this afternoon. We are waiting for a consult with a headache specialist here to see if there is a way to manage the headaches without shunts since it is looking like that chapter of my life may be done! :)
Friday AM
Cindy got the ultrasound done late last night and got back to her apt. around midnight. The mass around her ovary will need surgery to remove it but they want a biopsy first. Today she is hoping to have an appt. with the NS and possibly an OBGYN.
Thursday, March 8, 2012
Thurs Night
Cindy waited for 5 hrs in the ER to see a Dr. Now they want to do an ultrasound of the ovary area where this cystic mass is located. Hopefully it won't be another 5 hr wait time.
Thurs Afternoon
Cindy's spinal tap was done and the opening pressure was an 11. The last pressure was a 20. She got her stitches removed from her head. The CT scan of her stomach looks like there is a Cystic Mass in her stomach and she was brought over to ER to see what will be done.
Wednesday, March 7, 2012
Wednesday
Well, I saw the infectious disease doctor today. What they found was actually not infection but a "contaminant" that grew on the culture. The felt that further treatment for infection was not necessary. So disheartening.
We came back and I slept for a few hours while my mom spent time at the neurosurgeon office. Since my abdomen still hurts, they ordered a ct scan tomorrow morning. Then I am having a spinal tap :( and after that I think my stitches in my head and by my collarbone will come out. It seems that my head is gradually getting worse. Today has been the day that I can see that I am declining in that area, which is so discouraging as well. We'll see what the pressure is tomorrow, though, before speculating further. I am just not feeling good but perhaps that is due to the pressure. I don't know. The thought of yet another surgery to put the shunt back in just sickens me. But again, I am crossing bridges that I am not up to yet so I will leave it at that.
I am discouraged. But God is good, all the time.
We came back and I slept for a few hours while my mom spent time at the neurosurgeon office. Since my abdomen still hurts, they ordered a ct scan tomorrow morning. Then I am having a spinal tap :( and after that I think my stitches in my head and by my collarbone will come out. It seems that my head is gradually getting worse. Today has been the day that I can see that I am declining in that area, which is so discouraging as well. We'll see what the pressure is tomorrow, though, before speculating further. I am just not feeling good but perhaps that is due to the pressure. I don't know. The thought of yet another surgery to put the shunt back in just sickens me. But again, I am crossing bridges that I am not up to yet so I will leave it at that.
I am discouraged. But God is good, all the time.
Tuesday, March 6, 2012
Tuesday
We finally have a bit of an answer after some effort! :) Kyle went there first thing this morning to find out that the doctor was gone until 3:00 and I left a couple messages. We were supposed to get a call by 1:00 but my parents stopped where the P.A. that was supposed to call was at a little after 1:00 and then found out the answers. The communication could improve, but the doctors here are really the best.
At this point, I know that I do have an infection--not a big surprise. Thankfully, though, my spinal fluid came back clear so it isn't in my brain. I have an appointment with the infectious disease doctors tomorrow morning and they will be telling us the next steps.
Kyle flew back home today. :( My mom is staying here with me now, though, which is a blessing. My dad left this afternoon so it is back to just two of us again. It was quite critical that we have an action plan with the doctors because we were going to be required to move out of our place in the morning if I didn't have an appointment. I will still need to get many stitches out of my head and by my collarbone sometime this week.
I still just don't feel so good. I am so exhausted that I really do little at all and even that is exhausting! I am beginning to have some pain in my abdomen again, which I suspect is the infection. So we will see what the next days will bring.
At this point, I know that I do have an infection--not a big surprise. Thankfully, though, my spinal fluid came back clear so it isn't in my brain. I have an appointment with the infectious disease doctors tomorrow morning and they will be telling us the next steps.
Kyle flew back home today. :( My mom is staying here with me now, though, which is a blessing. My dad left this afternoon so it is back to just two of us again. It was quite critical that we have an action plan with the doctors because we were going to be required to move out of our place in the morning if I didn't have an appointment. I will still need to get many stitches out of my head and by my collarbone sometime this week.
I still just don't feel so good. I am so exhausted that I really do little at all and even that is exhausting! I am beginning to have some pain in my abdomen again, which I suspect is the infection. So we will see what the next days will bring.
Monday, March 5, 2012
Monday evening
Just a quick note to say that we didn't hear from the doctor today. Kyle is going to walk down there first thing tomorrow morning and see if he can see the doctor or get an answer as quickly as possible. His flight leaves in the afternoon and he is to be picked up from where we are staying at 12:15.
Monday
We still wait for answers from the doctor. We need to find out if it was an infection, what type and how it is to be treated. Until we know those answers, we don't know what the next weeks look like. The most frequent question that I am getting is how my head is. Oh, what a hard question to answer! I have a headache, and it is stronger than it was prior to the shunt being removed. My biggest question is, can I live like this? I don't know yet. I just don't know.
Besides the headache, I have other head pain that is difficult to distinguish from the headache. I have three pretty good sized incisions on my head that are stitched shut. Under the incisions at the front of my head I know that after pulling the catheters out of my brain he put small titanium plates over the two holes in my skull to provide some protection there. That is good because I lightly bumped my head there one time and it nearly knocked me out with the pain. My head hurt for days afterwards. But I think now there is some additional pain there where these plates were installed.
My parents came in yesterday. It was so good and comforting to see them. Without knowing what my doctor has to say, right now it looks like Kyle will fly home tomorrow, my mom will stay with me and my dad will drive home. That could all change, but that is what we are thinking right now.
I continue to be extremely fatigued. Kyle is taking good care of me, making sure that I am getting my medication and things that I just don't remember. Right now I am just taking Tylenol for pain and a daily med that helps with the management of headaches. I've been taking 1/2 a sleeping pill sometimes just to ensure that I sleep well. I have stronger pain medications, but they seemed to be the culprit for my nausea so I just decided to quit taking them. Sometimes pain is easier to deal with then nausea.
Tanner surprised me with a precious gift yesterday. He is a member of the Knightsounds and they recorded the hymn, "It is Well" and he sent it to me by email. It is my favorite song and has been for a long time. Tears just ran down my cheeks as I listened to it yesterday. What a blessing!
Besides the headache, I have other head pain that is difficult to distinguish from the headache. I have three pretty good sized incisions on my head that are stitched shut. Under the incisions at the front of my head I know that after pulling the catheters out of my brain he put small titanium plates over the two holes in my skull to provide some protection there. That is good because I lightly bumped my head there one time and it nearly knocked me out with the pain. My head hurt for days afterwards. But I think now there is some additional pain there where these plates were installed.
My parents came in yesterday. It was so good and comforting to see them. Without knowing what my doctor has to say, right now it looks like Kyle will fly home tomorrow, my mom will stay with me and my dad will drive home. That could all change, but that is what we are thinking right now.
I continue to be extremely fatigued. Kyle is taking good care of me, making sure that I am getting my medication and things that I just don't remember. Right now I am just taking Tylenol for pain and a daily med that helps with the management of headaches. I've been taking 1/2 a sleeping pill sometimes just to ensure that I sleep well. I have stronger pain medications, but they seemed to be the culprit for my nausea so I just decided to quit taking them. Sometimes pain is easier to deal with then nausea.
Tanner surprised me with a precious gift yesterday. He is a member of the Knightsounds and they recorded the hymn, "It is Well" and he sent it to me by email. It is my favorite song and has been for a long time. Tears just ran down my cheeks as I listened to it yesterday. What a blessing!
Saturday, March 3, 2012
Saturday
Another day is nearly done. We had such a nice day today visiting with Kyle's sister Melanie & her husband Bob and later with Harry and Dori. What a blessing to have friends and family around to encourage us! My parents are gradually making their way here as they make deliveries for their business. They had hoped to get here tonight but due to a few delays with the tornado weather they won't quite make it. They have made their last delivery but are going to get here tomorrow morning.
I am doing okay. The weakness is hard to accept again and I become fatigued so easily. I took an hour nap after our company left today. I know that this fatigue is normal but it is discouraging all the same. Normal, boring, everyday life just looks so appealing. I look in the mirror at this bald lady with dark circles under her eyes and I sometimes wonder who I am and who I have become. Can I just wake up from this bad dream?
My head is okay. I have a headache and it seems like it is very gradually worsening but it is not nearly as bad as I anticipated that it would be. If I compare now to the point that I had the shunt first installed there is no comparison. At that time, about 12 hours after a spinal tap I would be in absolute misery. I had the spinal tap on Tuesday and I am still not miserable. So the question we have yet is could I live without the shunt? That would be such a blessing but I think more time will need to pass before we could make that decision.
Our kids are doing well and I miss them so very much. I am so proud of each of them and am sad to continue missing important little and big things in their lives. Right now I am really struggling with what to do with staying here. I know and have no doubt that this is where I really should be for many reasons. However, Tanner & Kylie have active roles in the musical mid March and it would just kill me to miss that! Watching it on video would be okay but it just isn't the same as being there and participating in the excitement. These types of things are what I dislike about my health issues the most. But, God has a plan, and although I may not like it so much right now or understand it at all I trust that His plan is best for me and my family. In the discouragement and a few tears, we continue to rest in that truth.
I am doing okay. The weakness is hard to accept again and I become fatigued so easily. I took an hour nap after our company left today. I know that this fatigue is normal but it is discouraging all the same. Normal, boring, everyday life just looks so appealing. I look in the mirror at this bald lady with dark circles under her eyes and I sometimes wonder who I am and who I have become. Can I just wake up from this bad dream?
My head is okay. I have a headache and it seems like it is very gradually worsening but it is not nearly as bad as I anticipated that it would be. If I compare now to the point that I had the shunt first installed there is no comparison. At that time, about 12 hours after a spinal tap I would be in absolute misery. I had the spinal tap on Tuesday and I am still not miserable. So the question we have yet is could I live without the shunt? That would be such a blessing but I think more time will need to pass before we could make that decision.
Our kids are doing well and I miss them so very much. I am so proud of each of them and am sad to continue missing important little and big things in their lives. Right now I am really struggling with what to do with staying here. I know and have no doubt that this is where I really should be for many reasons. However, Tanner & Kylie have active roles in the musical mid March and it would just kill me to miss that! Watching it on video would be okay but it just isn't the same as being there and participating in the excitement. These types of things are what I dislike about my health issues the most. But, God has a plan, and although I may not like it so much right now or understand it at all I trust that His plan is best for me and my family. In the discouragement and a few tears, we continue to rest in that truth.
Friday, March 2, 2012
Friday
So I did stay in the hospital one more night but have been released and am out now today! The night went well and the nausea seems to be better controlled. It just feels so good to be out!
The doctor stopped this morning and explained a bit more about the venous stent. Evidently to be a candidate it had to be ocluded (or partially blocked) and mine was not. It sounded like such a good possibility, but it is not to be.
Now we wait to see what the next step will be. We think the doctor will call on Saturday but it could be Sunday or Monday before we hear from him.
The doctor stopped this morning and explained a bit more about the venous stent. Evidently to be a candidate it had to be ocluded (or partially blocked) and mine was not. It sounded like such a good possibility, but it is not to be.
Now we wait to see what the next step will be. We think the doctor will call on Saturday but it could be Sunday or Monday before we hear from him.
Thursday, March 1, 2012
Thursday afternoon
Kyle is taking a little walk outside the hospital because it looks like a beautiful day. So I decided to spend a few minutes on the computer and write a little entry. Kyle will laugh when he sees the word little, because I always write more!
Today hasn't been an easy day, particularly due to the nausea. I have thrown up a few times today and we aren't sure what the cause is. The anti-nausea meds that usually work for me aren't working so we'll see what they come up with. We are leaning toward having me stay tonight yet for that reason. If I get sick over in our room we don't have a lot of options besides going through e.r. and I never like that. We'll see how the rest of the day goes, though. We have a few hours yet to make that decision. It is always hard for me to choose to stay in the hospital another night but Kyle will be weighing in on this decision and he will be more sensible than I.
The Lord has provided me a wise man for my husband! I really do have many things to be thankful for. Oh, how easy it is to see the glass half empty rather than half full.
Today hasn't been an easy day, particularly due to the nausea. I have thrown up a few times today and we aren't sure what the cause is. The anti-nausea meds that usually work for me aren't working so we'll see what they come up with. We are leaning toward having me stay tonight yet for that reason. If I get sick over in our room we don't have a lot of options besides going through e.r. and I never like that. We'll see how the rest of the day goes, though. We have a few hours yet to make that decision. It is always hard for me to choose to stay in the hospital another night but Kyle will be weighing in on this decision and he will be more sensible than I.
The Lord has provided me a wise man for my husband! I really do have many things to be thankful for. Oh, how easy it is to see the glass half empty rather than half full.
Thurs AM
Cindy talked with the Dr. this morning. From the results of the MRI - Cindy will not be a candidate for the stent - so that option is ruled out. She is going to be released from the hospital today. The Dr will be calling us sometime this weekend when the results come back on the infection and that will determine how long we need to wait to put the shunt back in. She is still fighting some nausea - hopefully that will get better as the day goes by. One positive is that the pressure in her head has not been to bad yet without the shunt in her and the spinal tap was done on Tues.
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