Merry Christmas, My Dear Friends,
I ventured to UCSF again this past Monday, this time taking my mother-in-law and my daughter with me. My navigator was on a cruise in South America, so I was on my own into, around, and out of the city...and I did it without flaw. She would have been so proud of me! We started with lunch at The Cheesecake Factory in Macy's at Union Square, and had time to watch the ice skaters and check out the Christmas decorations in Macy's. Then we made our way to my appointment at Mount Zion. I met with the Nurse Practitioner, Tammy, as Dr. Ryan was in Wisconsin celebrating his parents' 50th wedding anniversary.
I should share with you that a week before this appointment, I had gone to see my family doctor, David Duncan, as I was having a really hard time breathing, and I was working hard bringing up steady amounts of mucous. He checked my oxygen saturation and listened to my lungs, then began to ask me a number of questions. The oxygen in my lungs was normal, and my lungs weren't crackly, but after getting some info from me, he asked me to have a blood test and do a sputum test. I found out the next day that the blood test showed that I have an excess of fluid building in my body, which tends to suggest some kind of congestive heart failure, and the sputum test showed that I have a rare filamentous fungus in my lungs, so the sample has been sent to another lab for more detailed analysis, and I am on an anti-fungal medication. So far it seems to be helping a little bit. All of this led to Dr. Duncan getting my appointment with the cardiologist moved up two and a half weeks, though, so I met with her the day after my appointment at UCSF.
While it was not a"boring, just go home" appointment, there were not a lot of surprises at UCSF. I have continued to lose weight, just a bit, as my appetite is so-so. At this wonderful time of year where there are many once-a -year goodies, I just don't have much of a sweet tooth. Any other time of the year, that would be great, but I am missing out on so many yummy treats! I have to try and eat more protein as well as mine is low. So will try eggs, nuts, protein drinks, etc, as meat isn't a favorite right now, either. They were thrilled that my appointment with the heart doctor had been moved up as that is becoming a priority right now. I will return to UCSF on Monday, January 4th, to go over scans, which I will have this coming Monday. It will be interesting to see the results.
Matt was able to go to the cardiologist, Elizabeth Hereford, with me. She met us in her office to go over all of the facts of my case, and to look at all of the meds I am on. Wow, that was quite an array of bottles. Then she did an exam, and decided to have another EKG done, and she did her own echocardiogram (like a sonogram) of my heart. Matt got to see it, and she explained to him what it was he was looking at. He found it very interesting. She did not seem to think that the failure was as bad as the first echo led her to believe, although there is some there. So she took me off of the high blood pressure med I was on and put me on another one that she thinks will help the issue better. Of more concern to her was that my pulmonary pressure is twice what it should be. That means that while the oxygen in my blood is okay, the blood coming from my heart is not flowing well to my lungs so the volume is not there. This is causing my shortness of breath, which has become a regular thing lately, whether I am active or not. It is scary at times. Anyway, she is going to have to do some research on the meds I am on, how they work together or may be affecting me, and then will see me again in three weeks to see what the next step is. Which means that I live with the shortness of breath for now. But Matt and I had a really good impression of her, and feel confident that she will help us get to the bottom of this. Not an immediate result, but perhaps we are finally on the way to some answers.
I recently was asked to share my remembrances of God at Christmas. It all started at the manger, where God gave us Himself. In a show of His incredible love for us and desire to be with us and dwell with us, He stepped down from the throne and became one of us so we could get to know Him, and learn to trust Him, and love Him back. He could have done this many ways, but He knew that the best way was face to face. Oh, am I glad that the baby that Mary welcomed in the stable did not stay a baby. He grew up and showed us the kind of life that God wants us to live. And when we fell short, He offered us the gift of a lifetime. He went to the cross where He felt our sins, died our death, and lived our resurrection. The birth of Jesus would not have been complete without the cross. That's how much God loves us and wants to dwell with us. It's very easy to remember God at this time of year, when His name is in our songs, when we model His gift-giving, gather in churches to celebrate His birth, and honor Him with our nativity sets. It's so magical that we almost don't want it to end...and thankfully, it doesn't have to, because the God that we remember at Christmas can be found every day of the year. I pray that when He yearns for your fellowship and stands at the door of your heart and knocks, that you will be sensitive to hear it, and will be quick to answer and not keep Him standing outside in the cold or send Him away to a stable. May your heart be warm and inviting...a worthy place waiting for Him to dwell with you.
Merry Christmas, My Friends...and Fireflies,
Danene
December 25, 2009
Friday, December 25, 2009
Sunday, December 13, 2009
Catching Fireflies
Hello, My Friends,
Since we last shared time, I have started a second round of the chemos I am on. I don't get a break in between rounds, as I did with the Sutent, but they are still considered rounds.
I have experienced some interesting side effects with these two drugs, and the lack of some I have had before. About two weeks ago, I broke out in a rash from head to toe, red and raised and blotchy. I was a sight to behold. Around my neck, it looked like I had been sunburned. And when I went to get my bimonthly blood draw, the nurse had to go by touch to find the vein as my arm was so blotchy she couldn't see the veins. Since then it has almost all gone away. I still have a few spots and occasional itching, but overall it has passed. Amazingly, the kids in my class did not say anything about it or ask questions. I don't know why, as they couldn't have missed it! I do not have any signs of hand-foot syndrome, as I did before. How thankful I am as I walk pain free!
I have had a couple of sores in my mouth along the side of my tongue and in the back of my throat. At my appointment, the dentist was able to smooth a tooth that kept catching on the sores, and that helped tremendously. My hygienist also gave me something to put on top of it that would help it not hurt while I ate. She was wonderfully patient with me during my teeth cleaning. I have not had any problems with my tongue, as I did on Sutent, so I am not overly limited with what I can eat now, as far as spices, acids, etc.
A new experience is how these meds affect my appetite. It is very sporadic. I can be very hungry, then start to eat and fill up quickly. Other times I am not hungry at all, or nothing sounds good, so I have a hard time eating. Pretty much, I have lost all of the weight from being off the chemo for that month, and a little bit more. From my highest moment to now, 25 pounds total. I had bought a new pair of pants, as I do not have many pairs for the winter. I took them to my mom's to be shortened, and when I put them on, they no longer fit-very sloppy. Oh well!
I also find that I tire out much more easily. This is even more so because of the dreaded cough. I also seem to have aquired a cold, which has settled in my chest. The doctor put me on an antibiotic in hopes that it will not turn into anything else. I cannot get in to see the cardiologist until January 7th, so I will not have any answers as to being short of breath until then. Please continue to pray that the cough will begin to go away and that I will sleep at night without the feeling that my chest is heavy.
Last weekend, my mom and I were able to attend the Women of Faith's "It's a Grand New Day" in Sacramento. We went with some lovely ladies from our church. What a delightful time we had listening to Christian women make us laugh and think and sing. The first speaker was the dynamic and funny Patsy Clairmont. Towards the end of her turn, she shared that she has many fireflies in her life-those who bring moments of brightness in times of darkness. I want to share with you some of the fireflies who have brightened my life in the past few weeks of traveling through side effects and fatigue. When I first walked in to school sporting my lovely new rash, I showed it to the two ladies who run the office...and the school. Not a pretty sight, but one looked at me and said, "Danene, we think you are beautiful." I can't tell you how much that meant to me at that very moment. Since then, more colleagues than I can count have taken me aside to offer me a break in my class, to cover my yard duty, to spell me for a few minutes so I can catch my breath, just to let me know they care and are there for me. I have a very limited number of days for the year to use as sick days, so I am very selective in using them, and my collegues know that. What a comfort to know that if I just need a few moments, friends are there. What bright moments of light these fireflies have brought me.
I know that there are more fireflies in my life. In fact, if I was collecting, I believe I would have shelves full of jars full of fireflies who have brightened my days. Do you have fireflies in your life that you need to recognize and thank? And even more, can you be a firefly to someone else who is having a dark moment? This is a challenge to me, too. Find someone and be a bright light to them this week.
Glowing,
Danene
December 13, 2009
Since we last shared time, I have started a second round of the chemos I am on. I don't get a break in between rounds, as I did with the Sutent, but they are still considered rounds.
I have experienced some interesting side effects with these two drugs, and the lack of some I have had before. About two weeks ago, I broke out in a rash from head to toe, red and raised and blotchy. I was a sight to behold. Around my neck, it looked like I had been sunburned. And when I went to get my bimonthly blood draw, the nurse had to go by touch to find the vein as my arm was so blotchy she couldn't see the veins. Since then it has almost all gone away. I still have a few spots and occasional itching, but overall it has passed. Amazingly, the kids in my class did not say anything about it or ask questions. I don't know why, as they couldn't have missed it! I do not have any signs of hand-foot syndrome, as I did before. How thankful I am as I walk pain free!
I have had a couple of sores in my mouth along the side of my tongue and in the back of my throat. At my appointment, the dentist was able to smooth a tooth that kept catching on the sores, and that helped tremendously. My hygienist also gave me something to put on top of it that would help it not hurt while I ate. She was wonderfully patient with me during my teeth cleaning. I have not had any problems with my tongue, as I did on Sutent, so I am not overly limited with what I can eat now, as far as spices, acids, etc.
A new experience is how these meds affect my appetite. It is very sporadic. I can be very hungry, then start to eat and fill up quickly. Other times I am not hungry at all, or nothing sounds good, so I have a hard time eating. Pretty much, I have lost all of the weight from being off the chemo for that month, and a little bit more. From my highest moment to now, 25 pounds total. I had bought a new pair of pants, as I do not have many pairs for the winter. I took them to my mom's to be shortened, and when I put them on, they no longer fit-very sloppy. Oh well!
I also find that I tire out much more easily. This is even more so because of the dreaded cough. I also seem to have aquired a cold, which has settled in my chest. The doctor put me on an antibiotic in hopes that it will not turn into anything else. I cannot get in to see the cardiologist until January 7th, so I will not have any answers as to being short of breath until then. Please continue to pray that the cough will begin to go away and that I will sleep at night without the feeling that my chest is heavy.
Last weekend, my mom and I were able to attend the Women of Faith's "It's a Grand New Day" in Sacramento. We went with some lovely ladies from our church. What a delightful time we had listening to Christian women make us laugh and think and sing. The first speaker was the dynamic and funny Patsy Clairmont. Towards the end of her turn, she shared that she has many fireflies in her life-those who bring moments of brightness in times of darkness. I want to share with you some of the fireflies who have brightened my life in the past few weeks of traveling through side effects and fatigue. When I first walked in to school sporting my lovely new rash, I showed it to the two ladies who run the office...and the school. Not a pretty sight, but one looked at me and said, "Danene, we think you are beautiful." I can't tell you how much that meant to me at that very moment. Since then, more colleagues than I can count have taken me aside to offer me a break in my class, to cover my yard duty, to spell me for a few minutes so I can catch my breath, just to let me know they care and are there for me. I have a very limited number of days for the year to use as sick days, so I am very selective in using them, and my collegues know that. What a comfort to know that if I just need a few moments, friends are there. What bright moments of light these fireflies have brought me.
I know that there are more fireflies in my life. In fact, if I was collecting, I believe I would have shelves full of jars full of fireflies who have brightened my days. Do you have fireflies in your life that you need to recognize and thank? And even more, can you be a firefly to someone else who is having a dark moment? This is a challenge to me, too. Find someone and be a bright light to them this week.
Glowing,
Danene
December 13, 2009
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