The Heaviness of Being
Hello again, dear friends and beloved family!
Well, I am nearly six weeks past surgery now. I can go 50 steps on my walker, and I've set a goal for 100 steps per day. I am doing my pt exercises 3 times per day, and I can really feel my legs getting noticeably stronger. I still tire easily, and my appetite is just non-existent. I was drinking two Boost High Protein drinks per day to supplement my diet, but as of Thursday of last week I can't keep the Boost down. I think I may have caught a bug, because we have been passing them around. Don goes with a can of Lysol in his hand all of the time. When he comes down the hall, I can hear him spraying before I can see him.
On top of this, the seasonal changes are causing allergy problems and asthma symptoms. I saw my lung doctor this morning, and he prescribed an Albuterol inhaler and Xopenex for my nebulizer. According to the doctor's scale, I have lost 25 pounds since my last chemo treatment in December. I go back in four weeks for a followup appointment.
I can't help but wonder if stress isn't contributing to my asthma / cold symptoms. I always get cold symptoms when stress piles up on me. And boy, is it piled up these days! Recovery from difficult surgery. Ever-growing sinus cavity tumor that makes vision difficult and typing nearly impossible. (See updates below for the latest on this one). Multiple sick Lemings in the household, with a variety of bugs. We've had vomiting, fierce diarrhea, headaches, sore throat, fever, stomach woes -- you name it. We didn't all have the same symptoms, so I think we have passed around several different bugs. (I'll spare you the gory details.) Finally, MAJOR child crisis, which will come to a head tomorrow morning at a school hearing. Ugh!
UPCOMING EVENTS:
3/17/09: I will see the surgeon who did my neck/tongue surgery (I get shivers just thinking about that one -- the most. painful. surgery. ever.) But I really like that doctor, so I hope he can help me again with the sinus cavity (eye socket) tumor.
3/24/09 - 3/25/09: Followups and tests at Vanderbilt from my spinal surgery and a hip/femur check.
4/9/09 - 4/10/09: We travel to the Nashville area again to (hopefully) start a clinical trial with a company called NeoPlas Innovation. This trial uses two drugs that are already FDA-approved: lovastatin (a cholesterol drug) and low-dose Interferon (a protein made by the immune system). The good news is that they are having a lot of success in achieving DFP (disease-free-progression) on a variety of cancers, most recently sarcomas. The bad news is that they have not tried the treatment on a leiomyosarcoma yet -- but they are willing to do so if I am. Since there is no risk to liver, kidneys, or heart, and no immunosuppression, I think it will be worth a try. I will have regular blood work and scans every two months to see if it is working. If you want more info, you can check out their website: http://www.neoplas.org/ .
4/16/09 - 4/19/09: 2009 Leiomyosarcoma Hugfest in New Jersey. Yes, I AM going to try again (hopefully I won't derail a whole trolley tour this time).
So, there you have it -- an update on my world! Thanks so much for caring about me. It means more to me than I can say.
:-) Sharon
Well, I am nearly six weeks past surgery now. I can go 50 steps on my walker, and I've set a goal for 100 steps per day. I am doing my pt exercises 3 times per day, and I can really feel my legs getting noticeably stronger. I still tire easily, and my appetite is just non-existent. I was drinking two Boost High Protein drinks per day to supplement my diet, but as of Thursday of last week I can't keep the Boost down. I think I may have caught a bug, because we have been passing them around. Don goes with a can of Lysol in his hand all of the time. When he comes down the hall, I can hear him spraying before I can see him.
On top of this, the seasonal changes are causing allergy problems and asthma symptoms. I saw my lung doctor this morning, and he prescribed an Albuterol inhaler and Xopenex for my nebulizer. According to the doctor's scale, I have lost 25 pounds since my last chemo treatment in December. I go back in four weeks for a followup appointment.
I can't help but wonder if stress isn't contributing to my asthma / cold symptoms. I always get cold symptoms when stress piles up on me. And boy, is it piled up these days! Recovery from difficult surgery. Ever-growing sinus cavity tumor that makes vision difficult and typing nearly impossible. (See updates below for the latest on this one). Multiple sick Lemings in the household, with a variety of bugs. We've had vomiting, fierce diarrhea, headaches, sore throat, fever, stomach woes -- you name it. We didn't all have the same symptoms, so I think we have passed around several different bugs. (I'll spare you the gory details.) Finally, MAJOR child crisis, which will come to a head tomorrow morning at a school hearing. Ugh!
UPCOMING EVENTS:
3/17/09: I will see the surgeon who did my neck/tongue surgery (I get shivers just thinking about that one -- the most. painful. surgery. ever.) But I really like that doctor, so I hope he can help me again with the sinus cavity (eye socket) tumor.
3/24/09 - 3/25/09: Followups and tests at Vanderbilt from my spinal surgery and a hip/femur check.
4/9/09 - 4/10/09: We travel to the Nashville area again to (hopefully) start a clinical trial with a company called NeoPlas Innovation. This trial uses two drugs that are already FDA-approved: lovastatin (a cholesterol drug) and low-dose Interferon (a protein made by the immune system). The good news is that they are having a lot of success in achieving DFP (disease-free-progression) on a variety of cancers, most recently sarcomas. The bad news is that they have not tried the treatment on a leiomyosarcoma yet -- but they are willing to do so if I am. Since there is no risk to liver, kidneys, or heart, and no immunosuppression, I think it will be worth a try. I will have regular blood work and scans every two months to see if it is working. If you want more info, you can check out their website: http://www.neoplas.org/ .
4/16/09 - 4/19/09: 2009 Leiomyosarcoma Hugfest in New Jersey. Yes, I AM going to try again (hopefully I won't derail a whole trolley tour this time).
So, there you have it -- an update on my world! Thanks so much for caring about me. It means more to me than I can say.
:-) Sharon
posted by Sharon | 9:37 PM
11 Comments:
i love you... you have more stamina than most of us would even care to have...will be thinking about you in the morning
This post has been removed by the author.
So is the Yondelis trial over for you? Or was it not working?
Good luck Sharon - you will prevail!
Yes on the Neoplas............much success is what I see in your future my S.P.B.
Love..........judy
Geez, this message had me smiling from ear to ear about the great progress in your walking, with furrowed brow regarding all of the symptoms your family is experiencing and the child/school issue, misty-eyed over your having to deal with the constant sinus/eye interference, and out of breath thinking about all of your upcoming travels and treatments.
I'm hoping, hoping, hoping that you can continue to gather the strength and will needed to go through all of the ups and down this life can bring and still manage to scoop up for yourself the ever-present joys it offers too.
Ah! Wonderful to have the update. I'm thrilled to read that you are making progress walking. You are a ROCK STAR for your determination!!
Sorry everyone has been so sick at your house. Hang in there and use that lysol and hand sanitizer too.
Please keep us informed on your progress with the new treatments.
Big love from Texas
That is great news, Sharon! If I didn't tell you this already, I'll say it again. Last year I'd have been a horrible mess if I did not find your blog...and then miraculously meet you! I had faith in Lisa's treatment and perserverence because of you! You put my mind at ease so I did not constantly worry for my sister with me being so far away,unable to help. I was lucky to be able to spend 2 months out of 2008 to be there for her and the kids. I truly feel that you boosted my spirit and gave me the strength I needed to be strong for them, no matter what happened. You are truly a blessing to me and I'll forever be thankful to you.
Hang in there...looks like your going to be verrrry busy!!!
-Theresa
No Doubt. This is the best writing I have seen in like forever and I am very thankful that YOU are the author. So much life packed into this. I am so grateful to see you. I am speechless. God Bless you Sharon.
Sharon:
Don't hesitate. There will be a future for you.
Best regards from Spain
I miss seeing you and Don....
Come back to California, the sun is shining and I want to be part of the 3 musketeers again
L,
J
I'm so glad to read you are walking! Good luck tomorrow. Just thinking about you checking in / reading to see how you are doing. I won't be at Hugfest this year, but my sister and Mom will be there.
Megan Bennett
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