I should probably explain the last part of that comment first....my hair is growing back slowly but there is now enough for me to "shampoo" and there was hair in the drain after my shower this morning. A small thing, true, but a little plus none-the-less. This time around, it is coming in curly and absolutely snow white, not a hint of gray. I hope this next round of chemo doesn't take it again, as we're starting something new, but it's nice to have a little somethin' there, at least for now.
Came home from Good Sam hospital late yesterday afternoon and am glad to be home and healing here. Everyone at the hospital was wonderful and very kind, but there's nothing like being in your own space. I'm grateful for the excellent care I received, but honestly, you really can't expect too much rest during the night with all the different interruptions for vitals, blood draws, administering shots and/or medication, breakfast delivered before a rooster even crows....
Turns out the blood clot was a little more serious than originally thought. The difficulty breathing (and I must admit, that is a scary feeling) was because a portion of the clot had broken off and gone into my lungs - I have a clot in each one. This is called a pulmonary embolism and is very serious. If it had continued to move through the lungs, it could have gone to the brain (a stroke) or the heart (heart attack). Not such good things. I was immediately put on blood thinners again and the biopsy is off the table for an indefinite period of time.
A whole battery of cardiac exams were done on Friday because my cardiac enzymes were elevated and continuing to rise. I learned this means there could be strain/damage to the heart or a precursor to a heart attack. All sorts of fun tests were done (not) and praise God, the cardiologist said the tests showed no damage to to the heart. Enzymes returned to normal by Friday evening and Dr. Karamlou said the rise in levels was likely due to the difficulty breathing.
I am on oxygen and will likely be on it for awhile, until blood oxygen levels return to normal. Think of your heart trying to pump blood around a blockage - that's what's happening with the clots in the lung. At rest, my levels are fine, but when I'm moving around, the levels drop lower than all would like. I'm not too far off of the acceptable range, but until I'm back to normal (does that word really apply to me?), I have to carry around an oxygen tank. Must admit, I do not like this little "leash" one bit and am praying for a quick return to normal. Not only is it a pain to carry around (not literally, just having tank with a tube up my nose is annoying), it is a very tangible reminder for me of what's happening with my health and I'll be honest. I don't like it one bit. It's not that big a deal when you consider the bigger picture, but I'll be glad when I can detach. There was a sad moment for me this morning, with this tank. I was sorting laundry, absorbed in my own thoughts, and looked up to see my three Portland Marathon medals hanging on the necklace rack. It struck me that 10 years ago, this month, I walked my first marathon. I looked at those medals, remembering how hard my friend Annie and I had trained for the event, walking up and down steep hills for hours at a time and realized, again, how much my life has changed in this past year. I cried for awhile, with a sense of loss, and after a bit, was reminded of two things. One, I am still walking and getting around just fine. Yes, slower than before and it's likely a marathon isn't in any near future, but I am still walking and fighting this cancer with everything I have. And two, when you cry a lot wearing a nasal cannula for oxygen, it gets clogged up with snot and then you can't breathe well again, so don't cry while wearing the darn thing.
Next step now is to begin chemo again and I'll start that this Wednesday. This particular chemo cocktail is delivered through an automatic pump device, similar in ways to an insulin pump. I'll "wear" the pump for 48 hours and then be off of it for two weeks before another 48 hour session. It will attach to a PICC line (intravenous catheter) that was put in my upper arm on Friday afternoon. This is similar to the port I had months ago in that there is a small tube in the vein of my arm that goes to the superior vena cava (major blood vessel by heart). The difference between the port and the PICC line is the port was under the skin and the PICC line has "attachment ends" that stick out of my arm. A little weird at first, but manageable. The blessing is now all blood draws and IVs and all that sort of stuff can go directly through the PICC line and I don't feel it. That in itself is a huge gift as we've had trouble recently easily finding veins and my poor arms are black and blue from elbow to wrist.
I've missed a lot of work these last days and am looking forward to getting back to my kiddos. I can go back on Weds. afternoon, after we hook up the pump, and am excited about that. The kids made get well posters for me while I was in the hospital and I just loved reading their comments and get well wishes. Linda (my sub) had them write an interesting fact they found in their Atlas with the comments and some were just hilarious. I guess they don't quite get ratios yet - one wrote "Did you know that in China 719 people fit in one car?" Isn't quite grasping that it's one car for every 719 people, but we'll work on that. They are my blessings, my medicine and such a joy.
As for my Giants, well, they gave it a good run. Now I'll have to root for whoever can beat those pesky Dodgers!
Thanks again for all your love and support and prayers, I cherish them and you,
Susan
Monday, September 28, 2009
Friday, September 25, 2009
Sue is doing well (of course we all knew she would rebound)
Sue is recovering well at Good Samaritan in Portland. She had a number of tests today and it looks like things have stabilized. Dr. Karamlou is not going to biopsy the liver for quite some time (too much risk for additional blood clots) and they start the 4th "chemo cocktail" this week.
Sue should be arriving home on Sunday and teaching again next Wednesday. She feels bad she had to miss her kids back to school night, but understands she is in good hands and healing well.
She wanted me to let everyone know that she is grateful for all the support and continued prayers.
Have a great weekend and know she will be back on her feet and going her usual pace on Monday.
Thank you all for the wonderful support.
Sincerely,
Matt
Sue should be arriving home on Sunday and teaching again next Wednesday. She feels bad she had to miss her kids back to school night, but understands she is in good hands and healing well.
She wanted me to let everyone know that she is grateful for all the support and continued prayers.
Have a great weekend and know she will be back on her feet and going her usual pace on Monday.
Thank you all for the wonderful support.
Sincerely,
Matt
Thursday, September 24, 2009
Update on Sue: 9-24-09 (blood clot scare)
I would like to update everyone on Sue. I just spent the past 4 days in Portland with her doctors and even though the scans were not favorable her attitude and outward appearance is as positive as ever. As you read from the prior blog update, she was unable to have the liver biopsy Tuesday as her blood was not "thick enough" after taking blood thinners from the prior chemo treatments. The doctors felt she needed three more days for the blood to thicken so the liver would not bleed excessively during the biopsy. The one risk in waiting was the possibility of blood clots forming. Well, today we had a little scare. This morning Sue had a twitch in her leg that would not go away and as the morning progressed, she had trouble breathing knowing something wasn't right. She was smart enough to recognize things weren't right and made the necessary calls to the hospital. It was blood clot in her calf area. Sheila and Annie were notified asap, but the hospital sensed urgency and had an ambulance take her to Good Samaritan hospital.
The doctors decided not to wait for a liver biopsy and elected to get her back on blood thinners and stay a few days under nurses care. I spoke with her this afternoon and she sounds great, just disappointed about missing back to school night. She should be heading back home Saturday and knowing Sue, back to school Monday with the kids.
Your prayer support is greatly appreciated.
Matt
The doctors decided not to wait for a liver biopsy and elected to get her back on blood thinners and stay a few days under nurses care. I spoke with her this afternoon and she sounds great, just disappointed about missing back to school night. She should be heading back home Saturday and knowing Sue, back to school Monday with the kids.
Your prayer support is greatly appreciated.
Matt
Tuesday, September 22, 2009
No biopsy today
Another twist today....I was prepped and ready to go for the biopsy, but my blood work showed that my blood is too thin and surgery is unsafe. I've been on Coumadin to keep the blood thin because of clotting problems and levels hadn't dropped enough to do the biopsy today.
Disappointing, especially since I had to take a day off from teaching, but I'd rather be safe than sorry! The biopsy has been rescheduled for Friday afternoon and I was given a dose of Vitamin K today to help counteract the Coumadin.
Turned out to be a hidden blessing as my brother, Matt, is here for a few days and the "reprieve" allowed me to spend a gorgeous, sunny afternoon with him. A very nice treat!
I'll keep you posted, but as it stands now, we're scheduled for Friday and will go from there. Still feeling good and loving a Portland Indian summer.
Love and hugs to all, Susan
Disappointing, especially since I had to take a day off from teaching, but I'd rather be safe than sorry! The biopsy has been rescheduled for Friday afternoon and I was given a dose of Vitamin K today to help counteract the Coumadin.
Turned out to be a hidden blessing as my brother, Matt, is here for a few days and the "reprieve" allowed me to spend a gorgeous, sunny afternoon with him. A very nice treat!
I'll keep you posted, but as it stands now, we're scheduled for Friday and will go from there. Still feeling good and loving a Portland Indian summer.
Love and hugs to all, Susan
Saturday, September 19, 2009
"Scan results disappointing again"
The much hoped for good news regarding the most recent scan didn't happen...again. I met with Dr. Karamlou yesterday and the growths in the liver are much bigger than before. Sure wasn't what we wanted to hear (Mom was with me) and very disappointing.
What is interesting (for lack of a better term) is that the lung and pancreas appear to have stabilized - there has been no change in the nodules in either place and that is great. The growths in the liver, however; are growing rapidly. Dr. Karamlou said this would indicate the chemo isn't working, but also raises the question of a very slight (1-2% chance) that what we're dealing with in the liver may not be the cancer we think it is. This doesn't mean the growths aren't cancerous, the tumor markers and other indicators clearly show it is, but it does raise the ever so slight possibility the cell structure of the liver growths aren't what they (the docs) think they are. Bottom line is, with even the slightest possibility it could be a different cell base, we need to be sure and it was agreed I would have another liver biopsy on Tuesday. This will confirm exactly what we are dealing with, in the liver, and a protocol can be determined from there.
My first reaction to the chance it could be something else (and remember, this is a VERY slight possibility) was thunderstruck and I asked "Is it possible I have a third cancer?" Dr. Karamlous said no, this wasn't likely but it is possible for cell structure to be different in the liver, even with a metastasized cancer. So.....we take another turn in the road on this cancer journey. The word that keeps coming up in the conversations is "atypical". Nothing about my cancer journey has taken what, in medical terms, would be considered a normal progression and this is just another fork in the cancer road.
The biopsy is currently scheduled for Tuesday, the 22nd, and I'll see Dr. Karamlou on Friday, the 25th for the results and the next steps. If if is the same cancer, we'll start a new chemo that is delivered through a 48 hour pump via a pic line and if it's not....well, I'll find out on Friday.
Many praises in even all this.....I still feel good, have energy and am loving being back in the classroom with the kids. It has been just great! We're starting our third week of school on Monday (is that possible already?) and it's been so much fun getting to know each one of the 140+ kids I have. The weather has been delightful with a combination of warm, sunny days and a little bit of rain here and there and my Giants are still not completely out of the race for the wild card. There is hope!
And that's my bottom line, there is hope. Hope in healing for this cancer and in the joy of every day. Your prayers for a quick and safe biopsy on Tuesday are so appreciated. I'll update again as soon as we know more.
In the meantime, love, hugs and blessings to all,
Susan
What is interesting (for lack of a better term) is that the lung and pancreas appear to have stabilized - there has been no change in the nodules in either place and that is great. The growths in the liver, however; are growing rapidly. Dr. Karamlou said this would indicate the chemo isn't working, but also raises the question of a very slight (1-2% chance) that what we're dealing with in the liver may not be the cancer we think it is. This doesn't mean the growths aren't cancerous, the tumor markers and other indicators clearly show it is, but it does raise the ever so slight possibility the cell structure of the liver growths aren't what they (the docs) think they are. Bottom line is, with even the slightest possibility it could be a different cell base, we need to be sure and it was agreed I would have another liver biopsy on Tuesday. This will confirm exactly what we are dealing with, in the liver, and a protocol can be determined from there.
My first reaction to the chance it could be something else (and remember, this is a VERY slight possibility) was thunderstruck and I asked "Is it possible I have a third cancer?" Dr. Karamlous said no, this wasn't likely but it is possible for cell structure to be different in the liver, even with a metastasized cancer. So.....we take another turn in the road on this cancer journey. The word that keeps coming up in the conversations is "atypical". Nothing about my cancer journey has taken what, in medical terms, would be considered a normal progression and this is just another fork in the cancer road.
The biopsy is currently scheduled for Tuesday, the 22nd, and I'll see Dr. Karamlou on Friday, the 25th for the results and the next steps. If if is the same cancer, we'll start a new chemo that is delivered through a 48 hour pump via a pic line and if it's not....well, I'll find out on Friday.
Many praises in even all this.....I still feel good, have energy and am loving being back in the classroom with the kids. It has been just great! We're starting our third week of school on Monday (is that possible already?) and it's been so much fun getting to know each one of the 140+ kids I have. The weather has been delightful with a combination of warm, sunny days and a little bit of rain here and there and my Giants are still not completely out of the race for the wild card. There is hope!
And that's my bottom line, there is hope. Hope in healing for this cancer and in the joy of every day. Your prayers for a quick and safe biopsy on Tuesday are so appreciated. I'll update again as soon as we know more.
In the meantime, love, hugs and blessings to all,
Susan
Monday, September 7, 2009
"September Already?"
I find myself saying that frequently.....September already? What happened to August? And, here in Portland, what happened to the summer weather? It's been a cold, gray, damp couple of days and I think whatever real summer we had happened while I was traveling the past weeks. This is much better than the 100+ degree blistering heat days I came home to after the cruise, so no real complaints! And with the kiddos returning to school this week, the cooler temps will help them stay a bit more focused, right? :)
Back to school for me was last Monday, August 31st, and it was great to be in the classroom and with my colleagues. Students don't start until Sept. 9th so it was nice to have time to ease into the routines again. Such an answer to prayer for me - when I left in June, I promised myself as well as friends and students I would be back in Sept. so to truly be back, see my name on the schedule and go about the start of the year tasks is such a gift. I was a little concerned about my energy level but at the end of each day, the tired feeling I experienced was a normal, end of the work day kind of tired - not flat on my face. Granted, that will change a bit when the kids begin this week and it will likely be early to bed every night for awhile, but I am so grateful to still feel good and have the energy to work.
God has so protected me, even as the cancer has progressed. My plan is to teach full time for as long as my health/energy will allow, and, as far as I am concerned, that will be for the full school year. My current chemo schedule is two weeks on, one week off so I've scheduled chemo for Friday afternoons with the weekend to recover.
Chemo last Friday went fine and there has been the usual fatigue and nausea immediately following the session, but nothing out of the ordinary and I feel good today. Hmmmm....things have really changed when fatigue and nausea have become normal occurrences in my life. But if this chemo cocktail is doing the trick and kicking the cancer butt, then I say "bring it on"! The next scan is scheduled for Sept. 16th and I'll see Dr. Karamlou on the 18th for results.
Keep praying for that healing miracle! August was another month of "firsts", some much more enjoyable than others. My mom, sister and I went to the Shakespeare Festival in Ashland and it was fabulous. Considering Ashland isn't really all that far from Portland, it's a shame it took me so long to get there, but it was well worth it. We saw "MacBeth" and "Much Ado About Nothing" and thoroughly enjoyed each one. I highly recommend a trip there.
After the festival, I flew back to Connecticut with my sister and spent a week there with her family, exploring their town (Westport) and even a little bit of NYC. I hadn't been to CT before and we had a great time. I will say I'm no fan of east coast heat and humidity though. Whew! Regardless, it was a really nice week with my niece and nephew, Ryan and Meghan, my sister and brother-in-law and their menagerie. Cats, a hamster and, not one but two, Newfoundland dogs. Darling pups, Wally and Tinkerbell, but they are the size of small black bears! Thankfully, a lot more sweet tempered than a bear :)
The other first (this one I didn't like so much) was a short stint in the hospital. A day or so after a chemo session in early August, I had a very high fever and chills and was sent promptly to the ER for evaluation. The ER on a Saturday night.....quite the wild time there, but thankfully, not for me. :) Though blood and other tests didn't show signs of infection and I wasn't neutropenic (white blood cell count too low), the on-call oncologist and ER doc didn't like the look of my lung x-rays and said I had pneumonia. Not a great thing for a lung cancer patient to develop....I was admitted for observation, antibiotics and rest and spent three days in the hospital while all figured out what was actually happening. The good news is I did not have pneumonia after all and it was determined I had just a bad case of chemo fevers. I will say again how grateful I am for all the great nurses and doctors I've had and everyone was really good to me while I was hospitalized. Just don't go to the hospital if you want to actually get any rest :) They were all very nice about it, but the frequent middle of the night visits for vitals, or antibiotics or a blood draw didn't make for a very restful visit! The whole experience was a little bit sobering for me as I have had so few problems, medically, in this cancer journey and this was a reminder that things may not always go just as I think they will. Fortunately, I wasn't as sick as everyone feared and was "sprung" in time to make it to the Shakespeare Festival. :)
Thought I'd include a few more pictures of the Europe trip - me in Venice and Ephesus and the Acropolis in Greece. I really had such an amazing summer with all the travels I was able to take and the friends that came to spend time with me. I don't take the blessings of my family, friends or this awesome life for granted for one minute.
My Giants are trying hard to get that wild card spot for the playoffs and I'm excited to think they just might make it! Keep praying for that miracle and for some good news on the scan this time. I'm ready for some positive results, how about you?
Back to school for me was last Monday, August 31st, and it was great to be in the classroom and with my colleagues. Students don't start until Sept. 9th so it was nice to have time to ease into the routines again. Such an answer to prayer for me - when I left in June, I promised myself as well as friends and students I would be back in Sept. so to truly be back, see my name on the schedule and go about the start of the year tasks is such a gift. I was a little concerned about my energy level but at the end of each day, the tired feeling I experienced was a normal, end of the work day kind of tired - not flat on my face. Granted, that will change a bit when the kids begin this week and it will likely be early to bed every night for awhile, but I am so grateful to still feel good and have the energy to work.
God has so protected me, even as the cancer has progressed. My plan is to teach full time for as long as my health/energy will allow, and, as far as I am concerned, that will be for the full school year. My current chemo schedule is two weeks on, one week off so I've scheduled chemo for Friday afternoons with the weekend to recover.
Chemo last Friday went fine and there has been the usual fatigue and nausea immediately following the session, but nothing out of the ordinary and I feel good today. Hmmmm....things have really changed when fatigue and nausea have become normal occurrences in my life. But if this chemo cocktail is doing the trick and kicking the cancer butt, then I say "bring it on"! The next scan is scheduled for Sept. 16th and I'll see Dr. Karamlou on the 18th for results.
Keep praying for that healing miracle! August was another month of "firsts", some much more enjoyable than others. My mom, sister and I went to the Shakespeare Festival in Ashland and it was fabulous. Considering Ashland isn't really all that far from Portland, it's a shame it took me so long to get there, but it was well worth it. We saw "MacBeth" and "Much Ado About Nothing" and thoroughly enjoyed each one. I highly recommend a trip there.
After the festival, I flew back to Connecticut with my sister and spent a week there with her family, exploring their town (Westport) and even a little bit of NYC. I hadn't been to CT before and we had a great time. I will say I'm no fan of east coast heat and humidity though. Whew! Regardless, it was a really nice week with my niece and nephew, Ryan and Meghan, my sister and brother-in-law and their menagerie. Cats, a hamster and, not one but two, Newfoundland dogs. Darling pups, Wally and Tinkerbell, but they are the size of small black bears! Thankfully, a lot more sweet tempered than a bear :)
The other first (this one I didn't like so much) was a short stint in the hospital. A day or so after a chemo session in early August, I had a very high fever and chills and was sent promptly to the ER for evaluation. The ER on a Saturday night.....quite the wild time there, but thankfully, not for me. :) Though blood and other tests didn't show signs of infection and I wasn't neutropenic (white blood cell count too low), the on-call oncologist and ER doc didn't like the look of my lung x-rays and said I had pneumonia. Not a great thing for a lung cancer patient to develop....I was admitted for observation, antibiotics and rest and spent three days in the hospital while all figured out what was actually happening. The good news is I did not have pneumonia after all and it was determined I had just a bad case of chemo fevers. I will say again how grateful I am for all the great nurses and doctors I've had and everyone was really good to me while I was hospitalized. Just don't go to the hospital if you want to actually get any rest :) They were all very nice about it, but the frequent middle of the night visits for vitals, or antibiotics or a blood draw didn't make for a very restful visit! The whole experience was a little bit sobering for me as I have had so few problems, medically, in this cancer journey and this was a reminder that things may not always go just as I think they will. Fortunately, I wasn't as sick as everyone feared and was "sprung" in time to make it to the Shakespeare Festival. :)
Thought I'd include a few more pictures of the Europe trip - me in Venice and Ephesus and the Acropolis in Greece. I really had such an amazing summer with all the travels I was able to take and the friends that came to spend time with me. I don't take the blessings of my family, friends or this awesome life for granted for one minute.
My Giants are trying hard to get that wild card spot for the playoffs and I'm excited to think they just might make it! Keep praying for that miracle and for some good news on the scan this time. I'm ready for some positive results, how about you?
Take care,
Susan
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