We made gluten-free pizza last night to celebrate getting the stitches out! My right side is still tender, but it no longer has that pulling/pinching sensation of the stitches. Was able to sleep on my side with no discomfort last night! Yea! The surgeon said that I have been "above the norm" in all aspects of my recovery. I think he must do a lot of surgeries where peoples lungs are pretty bad anyway....whereas I have very healthy lungs and am healthy, in general. Just having this rogue tumor in there....which is now gone. So I have no cancer in my body at this time! Just had my eyes checked and my eyes are healthy, also. And you all know I have a healthy sense of humor.....so all is well, indeed.
I am resisting the urge to do a lot of investigating interferon treatment on the Internet, knowing that doing that just opens a big can of worms of dubious information. I am just making a list of questions for the oncologist.
To clarify, the treatment they are offering is a preventative measure. I have no cancer at this time that they would be targeting. I am cancer-free today.
So one of my decisions today is......should we take advantage of all the big-screen TV's on sale before the Super Bowl this Sunday and go buy one!?!?! Which leads to many decisions about choosing one and from which store...what will be do with the old one......do we have the right stand to hold the new one at the right height......can we fit it in our car......can we get it in the house.....do we have the right cables......blah..blah..blah. It may not happen. My capacity to do multiple tasks and critical thinking is not 100% yet. But I have won some games of Spider and Scrabble on the computer.......so I am definitely making progress. I remember the first day I tried Spider Solitaire and when the cards flipped out to start the game my mind just reeled....ti was so fast! And trying to scan the row of 7 cards to see plays seemed like I was looking at the Grand Canyon. Definitely doing better.
I have all the cards I have gotten set up on the piano....on every flat surface of the piano, and now spreading to the bench! I never, ever thought I would be getting so many - especially in this day of email. I am amazed at the wonderful lift it gives to my spirit to gaze at those cards throughout the day and feel all the good thoughts. I have not been very good at sending people cards, rationalizing that one more card or not won't make any difference. If I have learned anything in the past few weeks, it is that having tangible proof that people care about you is very powerful. I endeavor to be better at letting people know I care.
(Please do not take this as a guilt-trip to send cards.....all of the emails are equally as uplifting to me.....I have a separate folder for them and look through them periodically.)
I am looking forward to another great day of feeling stronger....in every way.
All will be well!
Thursday, January 31, 2013
Wednesday, January 30, 2013
Some news
Got a phone yesterday from the pulmonologist who presented my information at the Tumor Board last Thursday. He said that the pathology report was non- conclusive about the tumor being a melanoma, but the consensus of all the oncologists at the Tumor Board was that it should be treated as a melanoma. They were suggesting a course of treatment with interferon, which is one of many kinds of chemical interventions to reduce re-occurrence of cancer.
I now have an appointment on Monday with an oncologist to discuss treatment options further. My Beloved and I are making a list of questions to ask, as this phone call from the pulmonologist was rather brief.
So, once again, I have more questions than answers.
For clarity, the meeting with the surgeon today will be to take out the remaining stitches and check in with my recovery. If I had not received the call yesterday from the other doctor I was assuming the surgeon would have more info, but now we know they are suggesting treatment, so this will be a perfunctory post-op visit.
So stay tuned from Monday when I will have more info. Of course, after getting all the info on the risks versus benefits of treatment, we still need to deliberate and pray about the decision I will make.
I am so grateful that my Beloved and I have had many serious (and a few silly) talks about quality of life and what is important to us. Given my long time working with hospice, we have had many very practical conversations, so we both feel we can say just about anything and not fear that the other person over-react. Our level of trust and commitment with each other and strong faith in a Higher Power is key to our going forward day-by-day.
Keep the positive thoughts and prayers coming!
I now have an appointment on Monday with an oncologist to discuss treatment options further. My Beloved and I are making a list of questions to ask, as this phone call from the pulmonologist was rather brief.
So, once again, I have more questions than answers.
For clarity, the meeting with the surgeon today will be to take out the remaining stitches and check in with my recovery. If I had not received the call yesterday from the other doctor I was assuming the surgeon would have more info, but now we know they are suggesting treatment, so this will be a perfunctory post-op visit.
So stay tuned from Monday when I will have more info. Of course, after getting all the info on the risks versus benefits of treatment, we still need to deliberate and pray about the decision I will make.
I am so grateful that my Beloved and I have had many serious (and a few silly) talks about quality of life and what is important to us. Given my long time working with hospice, we have had many very practical conversations, so we both feel we can say just about anything and not fear that the other person over-react. Our level of trust and commitment with each other and strong faith in a Higher Power is key to our going forward day-by-day.
Keep the positive thoughts and prayers coming!
Monday, January 28, 2013
Monday, Monday
Though days of the week don't mean much anymore....
Saturday we went to a friends funeral at our former church, and I learned that 3 hours out of the house and an hour of standing in a large crowd visiting is too much! So a little Tylenol and a lot of couch time followed, but I did recover in a couple hours.
Sunday I drove to church. I have gotten so much support from our current church family ( and our former church family) that I felt it was important to get out let people see that I was pretty functional! The prayers and cards and calls from everyone have just been tremendous. Two of my Beloved's aged Aunts in Canada have called to see how I am progressing! So I was able to call each of them and let them hear that I am doing well. It was good to be at church and feel all the love in action that happens in such communities of faith.
I spent the afternoon on the couch - napping with an eye on the college women's basketball games - and was able to get out to an evening gathering of like-minded friends that I have known since I moved to Seattle. And that was good. Last week I was driven to the meeting and this week I was able to drive myself.
And today I took a shower and ate breakfast and didn't have to rest afterwards! So, small victories.
I think this week I will need to start to actually "do" some tasks, like preparing for taxes..... finishing my CEU's to maintain my social work license.
And I stepped on the bathroom scale today. Yikes! I guess eating whenever I am awake needs to stop! I am not burning up many calories yet, so all the snacking needs to drop off the plan. Balance in all things, eh?
Today I get my blood tested to see if it is up to the desired level of anti-coagulation yet. Tomorrow (Tues.) I get my eyes checked. I missed my appointment was in the hospital, so it is great that an appointment opened up so soon.
Wednesday is when I meet with the surgeon. Hopefully, to have some answers about the nature of the tumor. I also am looking forward to getting the stitches out from the site where the chest tube drain was. The large incision from the surgery that had internal stitches and super-glued shut on the outside has healed well. My right side area is still rather tender, but I have not needed regular Tylenol for several days now.
Now I think it is time to go play my euphonium. I took a couple days off from it like I did from blogging. Just needed a break.
I will update after my meeting with the doctor on Wednesday.....but it is an afternoon appointment, so don't expect any news until evening for those of you in the Midwest.
Saturday we went to a friends funeral at our former church, and I learned that 3 hours out of the house and an hour of standing in a large crowd visiting is too much! So a little Tylenol and a lot of couch time followed, but I did recover in a couple hours.
Sunday I drove to church. I have gotten so much support from our current church family ( and our former church family) that I felt it was important to get out let people see that I was pretty functional! The prayers and cards and calls from everyone have just been tremendous. Two of my Beloved's aged Aunts in Canada have called to see how I am progressing! So I was able to call each of them and let them hear that I am doing well. It was good to be at church and feel all the love in action that happens in such communities of faith.
I spent the afternoon on the couch - napping with an eye on the college women's basketball games - and was able to get out to an evening gathering of like-minded friends that I have known since I moved to Seattle. And that was good. Last week I was driven to the meeting and this week I was able to drive myself.
And today I took a shower and ate breakfast and didn't have to rest afterwards! So, small victories.
I think this week I will need to start to actually "do" some tasks, like preparing for taxes..... finishing my CEU's to maintain my social work license.
And I stepped on the bathroom scale today. Yikes! I guess eating whenever I am awake needs to stop! I am not burning up many calories yet, so all the snacking needs to drop off the plan. Balance in all things, eh?
Today I get my blood tested to see if it is up to the desired level of anti-coagulation yet. Tomorrow (Tues.) I get my eyes checked. I missed my appointment was in the hospital, so it is great that an appointment opened up so soon.
Wednesday is when I meet with the surgeon. Hopefully, to have some answers about the nature of the tumor. I also am looking forward to getting the stitches out from the site where the chest tube drain was. The large incision from the surgery that had internal stitches and super-glued shut on the outside has healed well. My right side area is still rather tender, but I have not needed regular Tylenol for several days now.
Now I think it is time to go play my euphonium. I took a couple days off from it like I did from blogging. Just needed a break.
I will update after my meeting with the doctor on Wednesday.....but it is an afternoon appointment, so don't expect any news until evening for those of you in the Midwest.
Thursday, January 24, 2013
Big day!
Driving 2 miles to meet up with friends.....then a nap....then out to a restaurant for an early dinner! Woo Woo. which, of course, meant stopping by our favorite maker of fine chocolates for a little bag of nibbles!
Playing my euphonium every day is being a great way to get my lungs going better and is wonderful for my spirit also. I have been away from the euph. playing trombone the past couple years....which is great....but I have played the euphonium for 50 yrs. It is my heart and soul. So getting back to playing some of the beautiful euphonium repertoire is being a real pick-me-up! As a fellow musician pointed out, practicing has often been a way of coping with life - especially as a teenager. It still is a balm for whatever is ailing me. Love it!
Now I will take it easy the rest of the evening......aahhhh! Grey's Anatomy night!
Playing my euphonium every day is being a great way to get my lungs going better and is wonderful for my spirit also. I have been away from the euph. playing trombone the past couple years....which is great....but I have played the euphonium for 50 yrs. It is my heart and soul. So getting back to playing some of the beautiful euphonium repertoire is being a real pick-me-up! As a fellow musician pointed out, practicing has often been a way of coping with life - especially as a teenager. It still is a balm for whatever is ailing me. Love it!
Now I will take it easy the rest of the evening......aahhhh! Grey's Anatomy night!
Wednesday, January 23, 2013
Tortoise path...
Yes, Hoagy Carmichael was right....slow motion does get you there faster. A couple low key days and I am doing well. Sleeping on my side is notably more comfortable and coughing is much less uncomfortable.
The couch and TV are still my best friends but I am able to be doing more reading. I am maintaining an A+ in napping and eating jello.
Grateful, grateful, grateful!
The couch and TV are still my best friends but I am able to be doing more reading. I am maintaining an A+ in napping and eating jello.
Grateful, grateful, grateful!
Tuesday, January 22, 2013
Adjusting expectations
OK, after the last couple days, I realize that it is not helpful to expect that I will feel better and be able to do more every single day!
Just because I have made great progress does not mean it will keep up at the same rate. I have been doing so well, that I really thought the rate of recovery would continue, but a couple "flat" days have me back in reality. I am grateful for my progress, but will give myself leeway to have some plateaus along the way to full function.
I was able to get better sleep last night. Definitely more comfortable being on my side for a time. My Beloved made a killer mac and cheese and veggie casserole last night! Yummmm.
I think I'l try playing my horn a little today again.....emphasizing the "little".
Wanting to do but not over-do!
Just because I have made great progress does not mean it will keep up at the same rate. I have been doing so well, that I really thought the rate of recovery would continue, but a couple "flat" days have me back in reality. I am grateful for my progress, but will give myself leeway to have some plateaus along the way to full function.
I was able to get better sleep last night. Definitely more comfortable being on my side for a time. My Beloved made a killer mac and cheese and veggie casserole last night! Yummmm.
I think I'l try playing my horn a little today again.....emphasizing the "little".
Wanting to do but not over-do!
Monday, January 21, 2013
Took a day off.
Weary. Did a few little things around the house and never got out to the computer. Lots of sports to watch on TV. Women's college basketball time....plus the NFL stuff.
I tried baking some rhubarb cobbler......must have messed things up...didn't quite turn out the way ti did the last time I made it. So my new rule is that I can't drive until I can follow a recipe. Safer for all!
Not such great sleep the past couple nights. Hard to really rest when I don't use up much energy during the day. Its a delicate balance. Still being short of breath a lot, but making progress overall. Really tired of coughing after over 2 months...... seriously. but at this point, the coughing is vital to getting my lungs cleared out and back working well.....*sigh*.
A dear friend is in her final days on this earth and we were able to go visit her in the hospital briefly. I am so grateful for all the people I have met on my journey through this life and the lessons they have taught me about being kind and gracious and honest. I will try to continue that legacy of living with integrity.
I tried baking some rhubarb cobbler......must have messed things up...didn't quite turn out the way ti did the last time I made it. So my new rule is that I can't drive until I can follow a recipe. Safer for all!
Not such great sleep the past couple nights. Hard to really rest when I don't use up much energy during the day. Its a delicate balance. Still being short of breath a lot, but making progress overall. Really tired of coughing after over 2 months...... seriously. but at this point, the coughing is vital to getting my lungs cleared out and back working well.....*sigh*.
A dear friend is in her final days on this earth and we were able to go visit her in the hospital briefly. I am so grateful for all the people I have met on my journey through this life and the lessons they have taught me about being kind and gracious and honest. I will try to continue that legacy of living with integrity.
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