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.
Friday, March 16, 2012
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! :)
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