Even though I am currently grounded and held to less than 6000' altitude, I am still moving forward with the plans for this year's backpack.
We are probably going to push the dates to later in the season than we originally contemplated, which will give me more time to recover, heal, and rebuild. Thanks, guys; I need it!
So far it looks like four of us, the same four who planned to do last year's attempt on Whitney (though two didn't get to come). We've selected the John Muir Trail again, this time from Tuolumne Meadows to Reds Meadow/Devil's Postpile --- oh yeah, with that little (!!!) side trip up Mt. Lyell. I might be skipping that side trip.
So since I already know that I sleep cold, I decided to splurge on a true 15-deg bag that's cut even tighter to my body. And it's here! My brand-new Mountain Hardwear Phantom 15 Women's Long down sleeping bag! Boy, you should feel how warm this puppy is! It's like, INSTANT. I think it will keep me plenty warm up there (when I thought we were going in June). We'll see which bag suits the weather best by the time the trip rolls around.
But boy, I keep eyeing Pine-Dawson-Baldy and thinking I want to try the new bag out!
I guess I better get my mind back on the beach thing for awhile...at least while I'm still restricted. I am slowly slowly SLOWLY feeling better. The dark circles under my eyes give away how rough the nights are. And the first thing upon waking, I usually choke for a half hour plus. My shoulders and back HURT from coughing so much. I still get sharp, breakthrough pains in my chest that appear to be cardiac in nature, as the pulmonary pain is ALWAYS there. I'll find out more when I see the heart surgeon tomorrow early morning (if he doesn't get called into emergency surgery again).
Wednesday, May 20, 2009
Monday, May 18, 2009
Bone Scan
I was too sick this weekend to function, so no traipsing about for me! And I am having a tough enough time that I don't argue with my body; I just stay down (and sit up in my chair every so often). My temp was still 99.9 when the home health nurse came on Friday, and then we ended up calling the doctor that night. But so far, I'm making baby steps forward. It's just really slow.
I am in a lot of pain, and sleep provides the only relief I get. I did finally break down and take a pain pill twice. I didn't even take a pain pill after I left the ICU, so that gives you a clue how badly I'm hurting now.
The pulmonologist on Thursday clearly thought this was lung-related rather that heart-related. All I know is, I am not getting well like I thought I would. I'm being treated for pulmonary fluid/pneumonia, but I am not making rapid progress.
Last night I hurt so bad, I finally got up and made a castor oil compress for my chest and put a heating pad over it. After I did the front, I put it on my back where the lungs roughly are. I finally got to sleep at 4 a.m.
And was, of course, awakened by a whining child at 6:20. Who then woke me up every 15 min to whine. Oh, please. "Call your dad!"
So I was beat by the time I had to leave for the bone scan at 9:30.
I got checked in for my radioactive isotope injection, and then had 3 hours to wait. Since my daughter had driven me, I offered to do something she would enjoy: check out the sale at the local mall store.
I should've taken the wheelchair. By the time I walked from the car, into the mall, to the store, and around to the departments (and I did this all as slowly as a very old person); I was so exhausted that I wanted to just stretch out on the floor and go to sleep. It just broke me; I never recovered.
The bone scan took its usual length of time, and then they told me they needed to do some additional scans--the same exact additional ones as last time. So I choose to derive from that information that my bones are probably stable. I'll find out soon enough.
But boy, these bones sure hurt from all the coughing, especially my jaw bones, shoulders, and neck.
We got out of there by 2:30. My daughter drove me straight home, and I went and laid down. And fell asleep. And slept straight through for 5 hours. Told you I was exhausted!
Tomorrow is my follow-up appointment with the heart surgeon, who so far is unaware of all my post-operation issues. I still feel like my heart is beating weirdly from time to time, especially when I am trying to recover from activity.
I can't get any chemo or the monoclonal antibody started until I am cleared of all the cardiopulmonary problems. So in the meanwhile, I'm trying to get as much nutrition and other good stuff in to me as possible. After all, it wouldn't be the first time I've fought metastasis on my own!
I am in a lot of pain, and sleep provides the only relief I get. I did finally break down and take a pain pill twice. I didn't even take a pain pill after I left the ICU, so that gives you a clue how badly I'm hurting now.
The pulmonologist on Thursday clearly thought this was lung-related rather that heart-related. All I know is, I am not getting well like I thought I would. I'm being treated for pulmonary fluid/pneumonia, but I am not making rapid progress.
Last night I hurt so bad, I finally got up and made a castor oil compress for my chest and put a heating pad over it. After I did the front, I put it on my back where the lungs roughly are. I finally got to sleep at 4 a.m.
And was, of course, awakened by a whining child at 6:20. Who then woke me up every 15 min to whine. Oh, please. "Call your dad!"
So I was beat by the time I had to leave for the bone scan at 9:30.
I got checked in for my radioactive isotope injection, and then had 3 hours to wait. Since my daughter had driven me, I offered to do something she would enjoy: check out the sale at the local mall store.
I should've taken the wheelchair. By the time I walked from the car, into the mall, to the store, and around to the departments (and I did this all as slowly as a very old person); I was so exhausted that I wanted to just stretch out on the floor and go to sleep. It just broke me; I never recovered.
The bone scan took its usual length of time, and then they told me they needed to do some additional scans--the same exact additional ones as last time. So I choose to derive from that information that my bones are probably stable. I'll find out soon enough.
But boy, these bones sure hurt from all the coughing, especially my jaw bones, shoulders, and neck.
We got out of there by 2:30. My daughter drove me straight home, and I went and laid down. And fell asleep. And slept straight through for 5 hours. Told you I was exhausted!
Tomorrow is my follow-up appointment with the heart surgeon, who so far is unaware of all my post-operation issues. I still feel like my heart is beating weirdly from time to time, especially when I am trying to recover from activity.
I can't get any chemo or the monoclonal antibody started until I am cleared of all the cardiopulmonary problems. So in the meanwhile, I'm trying to get as much nutrition and other good stuff in to me as possible. After all, it wouldn't be the first time I've fought metastasis on my own!
Thursday, May 14, 2009
A Blessing and A Curse
Many times, the medical assistants and I have laughed while giving my information to others, "She's in perfect health, except for this little cell-replication problem [known as terminal incurable cancer]." And working hard on staying healthy has had its blessings; such as not going completely bald all at once the last time I did chemotherapy, and staying symptom-free much of the time. My quality of life has been so good that this little diagnosis has seemed transparent to me at times.
The drawback is that I'm so healthy, we don't figure out what's wrong until it's REALLY wrong. For instance, when I had no immune system (neutrapenic) and was 6 weeks post-operative, I got a RAGING staph infection that almost killed me and left me in isolation in the hospital for a week. Yet my temperature never cracked 100 deg, the mark for when one is supposed to call the dr. Or like how the metastasis did not make itself known until it was pretty much everywhere and I was sinking low fast, yet my blood work stayed perfect.
Then there's also just the weirdness, the idiosyncracies that are me. I'm always good for a few surprises; just ask any of my doctors.
So right now, I'm passing all the tests. Yet why can't I walk? Why can't I breathe? Why does my chest hurt so badly, and I don't mean my incision area? Even yawning hurts; coughing is about killing me. The pain is causing me to breathe more shallowly again. And very importantly, why am I spiking a temp of 101, when I didn't even crack 100 deg when I was deathly ill before? This is so frustrating!!!
So the day after seeing the doctor, I had DH call and tell them I needed to see the doctor. I didn't even make it to the doctor appointment. When I showed up for the infusion appointment, my temperature was over 100 deg -- astonishing, for me (my normal temp is 97.2 -- and get this, I often get hypothermic (ie, 94,4) when I'm fighting infection!). The nurse asked me how I felt. "I feel like something is really wrong. My chest hurts a lot, too."
Okay, that did it. The doctor showed up and talked to me. No infusion, go directly to the pulmonologist and the cardiac surgeon.
By the time I got to the pulmonologist's office (one building over), my temp was spiking 101. Okay, that's really not right for me. And my sat oxygen, while a perfectly acceptable 92%, was definitely not my normal 98-100%. Heck, my sat oxygen was higher (95%) atop 14,242 ft White Mountain!
Yet everything looks good. Echocardiogram shows effusion is gone. Angiogram shows everything looking great. Chest CT does not show fluid (pneumonia or pleurisy) or blood clots. So what the heck is going on?
One thing the pulmonologist noted (and I wholeheartedly agree), these are the same symptoms I was complaining of BEFORE the pericardial effusion ever showed up on the echocardiogram. So perhaps the problem is we've never found the cause/root problem of the effusion.
Percussive thumping led the dr to believe there may still be some fluid around the lungs. So taking a bit of a stab at it, he gave me a shot of a steroid, a shot the same as the one I had in the hospital for pain and inflammation, and another round of antibiotics. That should hold me over till I see the cardiac surgeon on Tuesday; if I have a fever tomorrow, I'm supposed to call the pulmonologist.
Sigh. And I thought I'd be running up that hill by now.
The drawback is that I'm so healthy, we don't figure out what's wrong until it's REALLY wrong. For instance, when I had no immune system (neutrapenic) and was 6 weeks post-operative, I got a RAGING staph infection that almost killed me and left me in isolation in the hospital for a week. Yet my temperature never cracked 100 deg, the mark for when one is supposed to call the dr. Or like how the metastasis did not make itself known until it was pretty much everywhere and I was sinking low fast, yet my blood work stayed perfect.
Then there's also just the weirdness, the idiosyncracies that are me. I'm always good for a few surprises; just ask any of my doctors.
So right now, I'm passing all the tests. Yet why can't I walk? Why can't I breathe? Why does my chest hurt so badly, and I don't mean my incision area? Even yawning hurts; coughing is about killing me. The pain is causing me to breathe more shallowly again. And very importantly, why am I spiking a temp of 101, when I didn't even crack 100 deg when I was deathly ill before? This is so frustrating!!!
So the day after seeing the doctor, I had DH call and tell them I needed to see the doctor. I didn't even make it to the doctor appointment. When I showed up for the infusion appointment, my temperature was over 100 deg -- astonishing, for me (my normal temp is 97.2 -- and get this, I often get hypothermic (ie, 94,4) when I'm fighting infection!). The nurse asked me how I felt. "I feel like something is really wrong. My chest hurts a lot, too."
Okay, that did it. The doctor showed up and talked to me. No infusion, go directly to the pulmonologist and the cardiac surgeon.
By the time I got to the pulmonologist's office (one building over), my temp was spiking 101. Okay, that's really not right for me. And my sat oxygen, while a perfectly acceptable 92%, was definitely not my normal 98-100%. Heck, my sat oxygen was higher (95%) atop 14,242 ft White Mountain!
Yet everything looks good. Echocardiogram shows effusion is gone. Angiogram shows everything looking great. Chest CT does not show fluid (pneumonia or pleurisy) or blood clots. So what the heck is going on?
One thing the pulmonologist noted (and I wholeheartedly agree), these are the same symptoms I was complaining of BEFORE the pericardial effusion ever showed up on the echocardiogram. So perhaps the problem is we've never found the cause/root problem of the effusion.
Percussive thumping led the dr to believe there may still be some fluid around the lungs. So taking a bit of a stab at it, he gave me a shot of a steroid, a shot the same as the one I had in the hospital for pain and inflammation, and another round of antibiotics. That should hold me over till I see the cardiac surgeon on Tuesday; if I have a fever tomorrow, I'm supposed to call the pulmonologist.
Sigh. And I thought I'd be running up that hill by now.
Tuesday, May 12, 2009
A Rare and Valuable Resource
One More Test to Go
The good news is the pathology report from the .5 L of bloody effusion removed from around my heart did NOT show any tumors. This is especially good news, because metastasis to the pericardium was the most likely cause of the effusion I experienced. But it's a bit odd; this is only the second time ever my drs have seen this occur and it NOT be metastasis.
And I am still having trouble with my cardiopulmonary system, including uncomfortable chest pains and trouble breathing and fatigue. Still. Yet I am passing the imaging tests. So what is going on? We are 'perplexed but not despairing'. I do have a concern that the effusion was indeed caused by metastasis trying to get in there, and that my body is doing its best to fight it off. I sure was hoping I would be feeling better by now.
My regular oncologist notes I am whining about pain too much, so he has ordered a whole-body bone scan to check for metastasis to the bones. I have coughed so much, I feel like I have a broken shoulder!
My regular and second-opinion oncologists both had suggestions, but there are no standards of care for where I am now. I'm past all prognoses. The second-opinion oncologist tells me I am a "rare and valuable resource," a glorified guinea pig. I tell him, that's what I'm here for: to keep pushing that envelope until it's no longer an automatic death sentence to hear the news you have fourth-stage cancer. He is on the same page as me and my other doctors; keep me going and avoid anything bad happening until the cure is here. And this new oncologist will keep me in mind for any studies that might be helpful to me, too.
So I am going to get infused again with the monoclonal antibody on Thursday, and we will decide on and start a chemotherapy sometime in the next couple weeks (when I'm a bit stronger). Meanwhile, my oncologist has told me to AVOID elevations above 6000 ft and NOT push myself physically till we figure out what the heck is up with the chest pains, etc.
So perhaps it was a good thing we failed last weekend at driving out East Blue Ridge (parts of the drive are definitely above 6k ft). Darn it. What am I gonna do without my beloved mountains?
I guess that means it's time to go to the beach again!
If You Set the Bar Low Enough...
Saturday, May 9: East Blue Ridge (A Failed DRIVE!!!)
Now y'all knew I wasn't just gonna sit around in my bed recuperating all that time, right? So a week and a day after getting out of ICU, I was going stir-crazy from being stuck at home (and being worn out going to dr appts and testing). I called up my hiking buddy and we decided to just go for a simple little drive up into the mountains, to see if the East Blue Ridge dirt road is open now and take some wildflower pictures up there.
First, we questioned the stain under BB. I know the tranny seals are leaking a bit, so I asked DH to check all the fluid levels for me before we set out.
Of course, he didn't. Told me it would be fine. He drives me crazy like that sometimes. What am I gonna do, do it myself? With my incision from open-heart surgery? Sheesh. Oh, well. We set off anyway, relying on good fortune.
So for the first time in a long time, I was driving again! Our first stop was the wrong direction, trying to get a part for my friend's cooler. (We struck out at that, too.) After that, we headed out Hwy 138 to Largo Vista.
There were strange, cottony blooms alongside Largo Vista; we couldn't resist stopping and getting some pictures.
Winter fat.
We also saw some light red ones that were unfamiliar to me; my hiking buddy had told me about seeing them in another location. And of course, there's tons of the yellow (yarrow?).
Hop sage.
Cooper Goldenbush.
Western wallflower.
After that, we figured the next stop would be the bathrooms (outhouses) just up the road. We stopped there, and our attention was immediately caught by snow flowers. I have only seen these blooms (probably from a bulb, looking at how they dig OUT of the ground to bloom) at elevations about 7000'. It was pretty there, and I headed back to BB to get my camera.
Snow flower.
And stopped as I heard a sound. A roiling sound. A roiling boil sound, coming from my radiator! Grr!!!
So that's as far as we made it...the outhouses on Big Pines Highway. Aarrgh. I'm even failing at taking a leisurely DRIVE! How am I ever gonna rebuild? We made a cell call (with patchy reception) and ran out of pictures to take after the first 20 min of walking around the ridge.
Probably a forget-me-not.
I should know this one.But, I look at it this way: I got out of my bed and the house; I could recline in my captain's chair when my stitches and liver hurt; I greatly enjoyed the cool wildflower- and pine-scented mountain breeze; I had my buddy to talk to; and we got a few pictures. So if you set the bar low enough, it was a pretty good day. Even stranded.
We spent 2 hr+ alongside the road before DD rescued us. Later, DH and I did roadside repairs and had no trouble driving BB home. But BB went straight to the shop for some well-needed maintenance! Now, we're good to go again.
Chutes and Ladders
Tuesday, May 5: Oncology Follow-Up
Remember that game from childhood, Chutes and Ladders? Sometimes you were lucky enough to catch a ladder up, going way ahead. Sometimes you were unlucky enough to ride a chute down, and it could drop you all the way back to the starting point.
I feel like I just got dropped all the way back at the starting point. I climbed two 14ers plus a 9.4k last summer, but I'm as puny as they come right now. I can barely walk and breathe.
I went to see the oncologist following my release from the hospital. He explained what had happened: I'd had pericardial effusion that led to cardiac tamponade, which led to the syncope episode and the subsequent open-heart surgery. Then the general anesthesia had caused the lower lobes of my lungs to collapse, plus I had a bit of fluid in (pneumonia) and around the lungs. Okay, so that's why I'm feeling so tired!
The latest scans show 2 new lesions in the liver, one 1.9 cm and the other 1.8 cm. Damn, that was fast! I knew this cancer pegged out on the aggressive scale; but that's ridiculous!
The oncologist wants me to go see another oncologist for a second opinion, since I've had the cardiopulmonary complications, so he scheduled an appointment for me with one of the best. Normally, one waits ~6 wk after surgery to begin chemotherapy; obviously, we don't want to wait that long. And there are a choice of drugs to use (choose your poison, literally).
We also got an appointment for an echocardiogram for Thursday, as my chest still hurts and I don't want to wait 2 weeks to ensure everything is okay. I need to know if it's safe to push NOW. If it is, I'll start rebuilding.
Thursday, May 7: Cardiology Follow-Up
I saw the cardiologist, and he is thrilled with how well my heart has recovered and is beating. Also, the left ventricle ejection fraction is back to normal. He sent me for one more test, a CT to check for blood clots in my lungs and an angiogram. Either I would pass the test and be able to go hiking next week, or I would not pass and would be admitted into the hospital immediately.
I passed!!! Hallelujah! So the cardiologist cleared me to go back on the drugs as soon as the oncologist wants me to start. And I'm officially under his orders to start pushing myself physically again. He thinks the reason why I am still having trouble is that my body has been through a lot, plus the general anesthesia more deeply affected me this time (I really didn't feel strong enough to survive it, so I can see it leaving me this fatigued).
So nothing left to do but go home and recuperate and rebuild, and see what the oncologists say when I see them next.
Remember that game from childhood, Chutes and Ladders? Sometimes you were lucky enough to catch a ladder up, going way ahead. Sometimes you were unlucky enough to ride a chute down, and it could drop you all the way back to the starting point.
I feel like I just got dropped all the way back at the starting point. I climbed two 14ers plus a 9.4k last summer, but I'm as puny as they come right now. I can barely walk and breathe.
I went to see the oncologist following my release from the hospital. He explained what had happened: I'd had pericardial effusion that led to cardiac tamponade, which led to the syncope episode and the subsequent open-heart surgery. Then the general anesthesia had caused the lower lobes of my lungs to collapse, plus I had a bit of fluid in (pneumonia) and around the lungs. Okay, so that's why I'm feeling so tired!
The latest scans show 2 new lesions in the liver, one 1.9 cm and the other 1.8 cm. Damn, that was fast! I knew this cancer pegged out on the aggressive scale; but that's ridiculous!
The oncologist wants me to go see another oncologist for a second opinion, since I've had the cardiopulmonary complications, so he scheduled an appointment for me with one of the best. Normally, one waits ~6 wk after surgery to begin chemotherapy; obviously, we don't want to wait that long. And there are a choice of drugs to use (choose your poison, literally).
We also got an appointment for an echocardiogram for Thursday, as my chest still hurts and I don't want to wait 2 weeks to ensure everything is okay. I need to know if it's safe to push NOW. If it is, I'll start rebuilding.
Thursday, May 7: Cardiology Follow-Up
I saw the cardiologist, and he is thrilled with how well my heart has recovered and is beating. Also, the left ventricle ejection fraction is back to normal. He sent me for one more test, a CT to check for blood clots in my lungs and an angiogram. Either I would pass the test and be able to go hiking next week, or I would not pass and would be admitted into the hospital immediately.
I passed!!! Hallelujah! So the cardiologist cleared me to go back on the drugs as soon as the oncologist wants me to start. And I'm officially under his orders to start pushing myself physically again. He thinks the reason why I am still having trouble is that my body has been through a lot, plus the general anesthesia more deeply affected me this time (I really didn't feel strong enough to survive it, so I can see it leaving me this fatigued).
So nothing left to do but go home and recuperate and rebuild, and see what the oncologists say when I see them next.
Friday, May 8, 2009
Open Heart Surgery
Tuesday, April 28 to Friday, May 1: Live Through This
Tuesday
First thing Tuesday morning, I was at the cardiologist's office. He and one of his partners stood by while Kim, my favorite echocardiogram technician, showed them the areas they wanted to see. The echo showed that I had .5 L of fluid in the pericardium. Blessedly, the fluid had shifted more to one side and was no longer completely surrounding the heart and causing the cardiac tamponade.
The cardiologist was reluctant to send me to the hospital, given that they've almost killed me (and blew the most recent ER visit) AND the county had declared an emergency for swine flu. "You look like you're resting comfortably," he said. "Oh, yeah; as long as I stay lying down and don't do anything, I'm okay," I told him. I was all for avoiding the hospital for as long as I could.
He called the heart surgeon from the examination room and set up surgery for me for the next afternoon. "Go home and lie around eating bonbons!" he gave me strict orders. Okay, I'm making up the bonbon part. But I figured I could handle lying around doing nothing; I felt badly anyway. So that's what we decided to do, with me under orders to call 9-1-1 or head to ER if there were any problems.
That night, the fluid in the pericardium must've shifted, because suddenly I was feeling VERY VERY BAD, like I had the previous Thursday night before the syncope episode. Knowing the risk I was facing, we opted to get up and head for the hospital. I could barely make my body function; it was the most exhausted I've ever been (except the other times I've almost died). I can always tell when I'm on that path that leads to Death's door --- I have played ding-dong-ditch-it there more times than I ever thought possible. I always make it a point to try to get off that path immediately!
Thankfully, my prayers were answered when we were about 5 mi from home. The fluid shifted, and my heart could beat more properly again. Immediately I felt clearer-headed and could breathe easier again. We discussed our options and decided to head back home to get some sleep before surgery and ICU admittance the next afternoon.
Wednesday
I woke up---hey, that's always a good thing for which I give thanks. I do not take it for granted, even though I don't really worry or stress about it. Since surgery was scheduled for 5 pm, the hospital had told me I could eat a light breakfast as long as I was stopped eating and drinking by 9 am. I ate a couple egg yolks with toast and a few bites of bacon. I drank a few swallows of oj. At 9, I relinquished my plate but kept my orange juice. Between 9 and 10, I took a couple swigs of oj. Then I realized my mistake. I can't have the oj, either, after 9 am! I put the rest of the glass in the refrigerator.
And stupidly continued drinking water while I got ready to go. While I was being admitted in the hospital, I was drinking water. While I was getting prepped for surgery, I was drinking water. I am so used to doing imaging where you fast but drink lots of water that I had forgotten you can't have ANYTHING to eat OR DRINK, not even water, before surgery. I feel so brain-dead sometimes! I realized my error around 1 pm, after I had drunk ~half a liter of water.
Okay, this is not good. The nurses call to tell the surgeon what has happened and ask if we are going to postpone the surgery. While we are waiting for the response, someone comes to transport me on my gurney to the upstairs floor. When we get upstairs, he tells DH to say goodbye and shows him where he can wait. I'm being wheeled into surgery!
"Hey, wait a minute!" Even half dead, my brain will work and I can articulate what I need to save my own life. I explained that my surgery had been scheduled for 5 pm, not 1 pm--and that I'd not only had water that we were already questioning a need to postpone surgery, I'd had breakfast just 4 hr ago! I already had doubts I could survive general anesthesia, let's not stack the deck against me!
So seeing the problem, they left me in the hallway of the ORs area for a few hours, and I just napped on my gurney. I told the anesthesiologist I didn't think I could survive GA, but he assured me I would be okay. Sometime in the afternoon, I got wheeled into surgery. "Take good care of me," I told them as the anesthesia took effect.
I awoke still intubated on the OR table. And immediately started gagging and tried to sit up; this is a real-life nightmare for me! "Just a few minutes," the anesthesiologist said as he continued with his other work. AAAARRRRRGGGGGHHHHHH!!!!! I already have a horrible gag reflex; I've had a past BAD experience with intubation; this is a NIGHTMARE!!!!! My chest hurts hurts HURTS, especially since I tried to sit up. HELP! I focused everything I had on drifting back into the aftereffects of the anesthesia, relaxing, and not fighting the hugely wide tube impaling my body via my trachea. These are the times that try our souls...
"Okay!" he said brightly as he pulled the tube out. Thank God. I was briskly wheeled to recovery, a room full of gurneys and people with no walls or even curtains. Groan. Every bit of my torso hurt. I focused on resting and tuning everything out.
And came to being wheeled again, this time from recovery to ICU. Someone was squeezing my hand; I turned to see DH smiling at me and the pastor smiling at me right behind him. What a happy sight!
I got checked into ICU and that's where I stayed for the next couple days. I was just one hurting unit. My nurses took very good care of me, though. I used a pillow against my stitches, but coughing was horrible. And I still couldn't breathe right. But fortunately, I was able to get some sleep somewhere in the wee hours of morning.
Thursday
I woke up Thursday morning to learn I was supposed to suck on my lung device to at least 1250 cc today. I've never had a lick of trouble doing that after any of my previous surgeries, but this time I couldn't really move it past 500 cc -- and boy, did even that really hurt my lungs and chest to do!
Then, my vitals alarm kept going off. It seems my saturated oxygen was running as low as 83%. So I had to be on oxygen. I kept waking up every time I fell asleep, feeling like I wasn't getting enough oxygen. But the nurses watched me while I slept, and with the oxygen I was staying in the low 90s. Since I couldn't breathe without oxygen, I had to remain in ICU. But I did start getting up and getting myself to the bathroom, at least.
Sometime around 11:30 at night, another doctor showed up. My oncologist had asked a pulmonologist colleague if he would stop in at the hospital and see me. So he did, at the end of a very long day for him. Isn't that cool? And they rolled a portable machine right up to my ICU bed to get a chest x-ray---all I had to do was sit forward for a second. Trust me, it hurt to even do that little!
The pulmonologist felt there was a strong possibility that the lower lobes of my lungs had collapsed during the surgery, and that they were probably inflamed. So he ordered an intramuscular injection of a drug for me to reduce the inflammation and pain. There must've been something about the drug that wired me, for I did not get any sleep till well after 4 a.m, when the lab showed up for my blood draw. And the ICU ward that night/morning was not a pretty place to be; lots of people were struggling all around me just to keep breathing and keep their hearts beating. It was hellish. I just kept waiting for my body to stop hurting so much.
Friday
I woke up again a bit before 9:30 a.m., just in time for my very first breathing treatment with a nebulizer! I've heard about them from my mom friends with asthmatic children, but have never seen (let alone used) one. I could already tell the difference when I woke up; I was better able to breathe and could inhale the nebulizer's medicated steam without any trouble. I checked my lungs: I had no trouble reaching past 1250cc (yesterday's goal). My peak was 1750. Yep, the lungs are working again! And the nurses noted my saturated oxygen level was higher on room air than it had been the whole day yesterday while I was on oxygen!
But the medicine was also making me cough up the fluid and congestion in my lungs. OOOOWwwwwccchh!!! All I could do was press the pillow to my incision and deal with the hurt. But they heard me say Ouch on that ICU ward!
I spent the day clearing the lungs by coughing, plus worked on getting myself out of bed (successfully). Yay; I could do it! Now let me out of this place!
The oncologist and the cardiologist released me; we waited for the pulmonologist to release me. He came by around dinner time and told me that the radiologist thought the chest x-ray showed pneumonia , but that he thought it did not. To err on the side of caution, he wrote me a prescription for a week's antibiotics.
And with that, I was sprung from ICU and the hospital! The nurse helped me package up my dinner and I was OUTTA THERE!!!
And you know, as happy as I was to see Home and my awesomely comfortable bed, what made me happiest was crawling into my roomy garden tub and enjoying a good long soak. My 3-in incision is covered with superglue (since I spit back every kind of stitch put in me, including dissolving ones) and is surrounded by swelling and bruising from the spreader the surgeon used. I've never worried about any of the scars; I figure I've earned every last one of them. I definitely feel I earned this one!
So that's my ~11th surgery (counting the minor ones) since getting on the cancer bus; open heart surgery, to save my life once again. God Bless All My Doctors!!!
First thing Tuesday morning, I was at the cardiologist's office. He and one of his partners stood by while Kim, my favorite echocardiogram technician, showed them the areas they wanted to see. The echo showed that I had .5 L of fluid in the pericardium. Blessedly, the fluid had shifted more to one side and was no longer completely surrounding the heart and causing the cardiac tamponade.
The cardiologist was reluctant to send me to the hospital, given that they've almost killed me (and blew the most recent ER visit) AND the county had declared an emergency for swine flu. "You look like you're resting comfortably," he said. "Oh, yeah; as long as I stay lying down and don't do anything, I'm okay," I told him. I was all for avoiding the hospital for as long as I could.
He called the heart surgeon from the examination room and set up surgery for me for the next afternoon. "Go home and lie around eating bonbons!" he gave me strict orders. Okay, I'm making up the bonbon part. But I figured I could handle lying around doing nothing; I felt badly anyway. So that's what we decided to do, with me under orders to call 9-1-1 or head to ER if there were any problems.
That night, the fluid in the pericardium must've shifted, because suddenly I was feeling VERY VERY BAD, like I had the previous Thursday night before the syncope episode. Knowing the risk I was facing, we opted to get up and head for the hospital. I could barely make my body function; it was the most exhausted I've ever been (except the other times I've almost died). I can always tell when I'm on that path that leads to Death's door --- I have played ding-dong-ditch-it there more times than I ever thought possible. I always make it a point to try to get off that path immediately!
Thankfully, my prayers were answered when we were about 5 mi from home. The fluid shifted, and my heart could beat more properly again. Immediately I felt clearer-headed and could breathe easier again. We discussed our options and decided to head back home to get some sleep before surgery and ICU admittance the next afternoon.
Wednesday
I woke up---hey, that's always a good thing for which I give thanks. I do not take it for granted, even though I don't really worry or stress about it. Since surgery was scheduled for 5 pm, the hospital had told me I could eat a light breakfast as long as I was stopped eating and drinking by 9 am. I ate a couple egg yolks with toast and a few bites of bacon. I drank a few swallows of oj. At 9, I relinquished my plate but kept my orange juice. Between 9 and 10, I took a couple swigs of oj. Then I realized my mistake. I can't have the oj, either, after 9 am! I put the rest of the glass in the refrigerator.
And stupidly continued drinking water while I got ready to go. While I was being admitted in the hospital, I was drinking water. While I was getting prepped for surgery, I was drinking water. I am so used to doing imaging where you fast but drink lots of water that I had forgotten you can't have ANYTHING to eat OR DRINK, not even water, before surgery. I feel so brain-dead sometimes! I realized my error around 1 pm, after I had drunk ~half a liter of water.
Okay, this is not good. The nurses call to tell the surgeon what has happened and ask if we are going to postpone the surgery. While we are waiting for the response, someone comes to transport me on my gurney to the upstairs floor. When we get upstairs, he tells DH to say goodbye and shows him where he can wait. I'm being wheeled into surgery!
"Hey, wait a minute!" Even half dead, my brain will work and I can articulate what I need to save my own life. I explained that my surgery had been scheduled for 5 pm, not 1 pm--and that I'd not only had water that we were already questioning a need to postpone surgery, I'd had breakfast just 4 hr ago! I already had doubts I could survive general anesthesia, let's not stack the deck against me!
So seeing the problem, they left me in the hallway of the ORs area for a few hours, and I just napped on my gurney. I told the anesthesiologist I didn't think I could survive GA, but he assured me I would be okay. Sometime in the afternoon, I got wheeled into surgery. "Take good care of me," I told them as the anesthesia took effect.
I awoke still intubated on the OR table. And immediately started gagging and tried to sit up; this is a real-life nightmare for me! "Just a few minutes," the anesthesiologist said as he continued with his other work. AAAARRRRRGGGGGHHHHHH!!!!! I already have a horrible gag reflex; I've had a past BAD experience with intubation; this is a NIGHTMARE!!!!! My chest hurts hurts HURTS, especially since I tried to sit up. HELP! I focused everything I had on drifting back into the aftereffects of the anesthesia, relaxing, and not fighting the hugely wide tube impaling my body via my trachea. These are the times that try our souls...
"Okay!" he said brightly as he pulled the tube out. Thank God. I was briskly wheeled to recovery, a room full of gurneys and people with no walls or even curtains. Groan. Every bit of my torso hurt. I focused on resting and tuning everything out.
And came to being wheeled again, this time from recovery to ICU. Someone was squeezing my hand; I turned to see DH smiling at me and the pastor smiling at me right behind him. What a happy sight!
I got checked into ICU and that's where I stayed for the next couple days. I was just one hurting unit. My nurses took very good care of me, though. I used a pillow against my stitches, but coughing was horrible. And I still couldn't breathe right. But fortunately, I was able to get some sleep somewhere in the wee hours of morning.
Thursday
I woke up Thursday morning to learn I was supposed to suck on my lung device to at least 1250 cc today. I've never had a lick of trouble doing that after any of my previous surgeries, but this time I couldn't really move it past 500 cc -- and boy, did even that really hurt my lungs and chest to do!
Then, my vitals alarm kept going off. It seems my saturated oxygen was running as low as 83%. So I had to be on oxygen. I kept waking up every time I fell asleep, feeling like I wasn't getting enough oxygen. But the nurses watched me while I slept, and with the oxygen I was staying in the low 90s. Since I couldn't breathe without oxygen, I had to remain in ICU. But I did start getting up and getting myself to the bathroom, at least.
Sometime around 11:30 at night, another doctor showed up. My oncologist had asked a pulmonologist colleague if he would stop in at the hospital and see me. So he did, at the end of a very long day for him. Isn't that cool? And they rolled a portable machine right up to my ICU bed to get a chest x-ray---all I had to do was sit forward for a second. Trust me, it hurt to even do that little!
The pulmonologist felt there was a strong possibility that the lower lobes of my lungs had collapsed during the surgery, and that they were probably inflamed. So he ordered an intramuscular injection of a drug for me to reduce the inflammation and pain. There must've been something about the drug that wired me, for I did not get any sleep till well after 4 a.m, when the lab showed up for my blood draw. And the ICU ward that night/morning was not a pretty place to be; lots of people were struggling all around me just to keep breathing and keep their hearts beating. It was hellish. I just kept waiting for my body to stop hurting so much.
Friday
I woke up again a bit before 9:30 a.m., just in time for my very first breathing treatment with a nebulizer! I've heard about them from my mom friends with asthmatic children, but have never seen (let alone used) one. I could already tell the difference when I woke up; I was better able to breathe and could inhale the nebulizer's medicated steam without any trouble. I checked my lungs: I had no trouble reaching past 1250cc (yesterday's goal). My peak was 1750. Yep, the lungs are working again! And the nurses noted my saturated oxygen level was higher on room air than it had been the whole day yesterday while I was on oxygen!
But the medicine was also making me cough up the fluid and congestion in my lungs. OOOOWwwwwccchh!!! All I could do was press the pillow to my incision and deal with the hurt. But they heard me say Ouch on that ICU ward!
I spent the day clearing the lungs by coughing, plus worked on getting myself out of bed (successfully). Yay; I could do it! Now let me out of this place!
The oncologist and the cardiologist released me; we waited for the pulmonologist to release me. He came by around dinner time and told me that the radiologist thought the chest x-ray showed pneumonia , but that he thought it did not. To err on the side of caution, he wrote me a prescription for a week's antibiotics.
And with that, I was sprung from ICU and the hospital! The nurse helped me package up my dinner and I was OUTTA THERE!!!
And you know, as happy as I was to see Home and my awesomely comfortable bed, what made me happiest was crawling into my roomy garden tub and enjoying a good long soak. My 3-in incision is covered with superglue (since I spit back every kind of stitch put in me, including dissolving ones) and is surrounded by swelling and bruising from the spreader the surgeon used. I've never worried about any of the scars; I figure I've earned every last one of them. I definitely feel I earned this one!
So that's my ~11th surgery (counting the minor ones) since getting on the cancer bus; open heart surgery, to save my life once again. God Bless All My Doctors!!!
Wednesday, May 6, 2009
My Doctor is My Hero
Monday, April 27: Testing, testing...
My oncologist is an exceptional doctor and human being, and I knew he would help me find out whether I had had an episode of syncope or a seizure the previous Friday. On Sunday, I was so weak I couldn't even walk. Just a trip to the bathroom left me waiting at least 10 min for my heart to recover. I decided I would call him Monday morning.
It turns out I didn't have to---my doctor woke me up Monday morning. The fact that he does that is just one of the reasons why this guy is my hero. He wanted to know what had happened, why I wasn't in the hospital, and why the hospital hadn't called him. I told him what had transpired in ER, but that I still felt I needed emergency care.
"We have to find out why you lost consciousness," he told me. "I'm ordering tests today. " Whew! What a relief to get the ball rolling. Too bad ER didn't bother on Friday! Live and learn...I would've been better off skipping 911 and having someone drive me into the cancer center. But I just couldn't take that risk, or put my family through that. No perfect choices, are there?
An hour or so later, my daughter was driving me into town for an MRI of the head (to rule out or include metastasis to the brain; the ER CT scan would not be able to rule that out) and a CT scan of the chest and abdomen (to see what was up in there). I had to use a wheelchair when I got there; I was too weak to walk. I checked in and drank the lovely "stuff" (hey, this one tasted much better, like lemonade, and really hit the spot since I was breathless and thirsty). Then I had to wait at least one hour for the "stuff" to be in me. We could've died from boredom.
First I got called back for the MRI. While I was waiting for it, I got called for my IV for my CT scan. Then I can't remember which came next; the CT or the MRI. My daughter was running from waiting area to waiting area, hauling all the gear. Finally we were done and headed for home.
We were less than 5 miles away when my cell phone rang. It was the Imaging Center, telling me not to leave, to go see my doctor right away. I told them we would head back. My daughter got us turned around. My cell phone rang again. This time it was the doctor's office, telling me to come back right away. I told them we'd be there in 10 minutes. Guess I flunked the test, huh?
We got back to the medical center, back into a handicapped parking space, and my daughter got me back into the wheelchair. It was exhausting. She got me upstairs and the nurse took me back as soon as my face appeared in the door.
"Do you want to hear the news with me, or would you rather I filter it to you later?" I asked my daughter. The doctor came in; she elected to stay.
So the good news was: I passed the MRI; there are no signs of metastasis to the brain (Hallelujah, 'cause that is a biggie!).
The bad news? Pericardial effusion was compressing my heart and causing cardiac tamponade. Okay, so it's a real good thing I didn't try to push myself last Saturday on Mt. Williamson, huh? I asked him what caused the pericardial effusion. He said it could be metastasis to the pericardium. Hey, wait a second---that wasn't in the brochure! Nobody ever said the cancer could metastasize there!
"My liver really hurts, too," I told the doc, "Especially when I walk." "The CT shows a couple new lesions in the liver," he told me. "But we have to take care of this cardiac issue right away."
He had already arranged for me to see my cardiologist first thing in the morning to have an echocardiogram confirm the pericardial effusion. Once the confirmation was made, I would be scheduled for surgery to have a "window" made in the pericardium to drain the fluid off. He promised I'd feel a whole lot better after that! And then we would get started again on the chemotherapies to start knocking the spots out of my liver.
So we finally headed home after a full day of testing, knowing a whole lot more about what was going on and with a game plan in place.
Sunday, May 3, 2009
Calling 9-1-1
Saturday, April 2: Mt. Williamson (A Failed Summit)
This post is dedicated to Moosetracks, the luckiest girl in the world,
who keeps me out there in the mountains even when I'm bedridden.
Keep those trail reports coming, GF!
Islip Saddle to Mt. Williamson Summit
who keeps me out there in the mountains even when I'm bedridden.
Keep those trail reports coming, GF!
Islip Saddle to Mt. Williamson Summit
~6680' to 8244'
~5 mi roundtrip (~1600 elevation gain)
~5 mi roundtrip (~1600 elevation gain)
The snow is finally receding from the mountains in my So Cal "backyard," so I've been mulling over which summit to make next. My newest hfh hiking buddy is not from this area and has not explored much of our local mountains. Plus, I am still quite puny from whatever has been going on (I'm clearly trending the wrong way now and really need to get that turned around). So I thought a little hike, not much mileage but a good grade, would be best. Mt. Lewis was my first choice, but the road is still closed between Vincent Gap and Islip Saddle. So I printed out all the information I wanted for climbing Mt. Williamson (no, not the 14er! I'll start off with the smaller one!) the next Saturday and waited to hear from my hiking buddy.
I felt worse and worse as the week went on. I could barely get up. On Thursday, I called my daughter in and told her what she would need to watch for in case I had a seizure. I just did not feel right.
Thursday night/Friday morning, I woke up feeling REALLY REALLY BAD. "Wow, I think I need to call the doctor and go to the hospital right now," I thought. But what on earth would I say? All I could figure I could tell them is "Something is REALLY WRONG." That doesn't get ya very far in an ER. I compromised with myself by deciding to make an appointment with my oncologist in the morning.
I called and made the appointment, but didn't get one until Tuesday. I decided I would just stop by the office and see my oncologist after my scheduled echocardiogram appointment. I would just tell him, "Something is really wrong." I knew he would listen to me and try to find out what is going on.
So we set off, my daughter driving since I just didn't feel "right" and didn't trust myself to be driving. And boy was it a good thing! We hadn't gone but a mile when a traumatic event occurred. Here's what I remember of what happened:
Something didn't feel quite right; I was lightheaded and felt weird like I wasn't getting enough oxygen. It was like I had stood up too fast and was "head rushing," only I was sitting relaxed in the car. Right then, I knew I also had to cough. Since I already felt like I was "head rushing," I put my head towards my knees and tried to cough with as little force as I could.
The next thing I remember, I was aware of my arms and torso jerking. I was trying to fight my way to consciousness, and gain control of my left arm. It slammed SO HARD in my head that I thought we had been in a car wreck that I never saw coming. I heard a crazy LOUD static buzzing sound in my head and was becoming aware of music from the radio trying to bleed through it. I was going to ask my daughter "What's wrong with the radio?" but couldn't speak. I tried to fight my way to more consciousness. I realized we had not been in an accident; there was nothing wrong with the radio, the noise was in my head. I became aware of my daughter saying something. I finally made out the words. "Are you okay?" I realized we were parked by the side of the road and she was dialing her cell phone. "I think I just had a seizure," I said, alarmed. "Are you calling 9-1-1?" "No, I'm calling Daddy," she said just as I realized where exactly we were; how close to home. "Tell Daddy to call 9-1-1 and you drive home," I said. "We'll meet the paramedics there."
She was whipping the U-turn while still calling on the phone. I just focused on breathing. I was terrified it would happen again. Seizures, especially if caused by metastasis to the brain, often come in series. She told her dad something had happened to me, that I had lost consciousness, and that we needed him to call 9-1-1 to meet us at the house.
He was waiting for us on the street when we pulled up. He helped me into the house, where I lay on the couch with head elevated and just tried to get my heart to CALM DOWN!
When the paramedics arrived, my saturated oxygen level breathing room air was 100%. But my heart and BP were a bit erratic; I know my normal vitals after all this time! And I was deeply concerned that I'd had a seizure, indicative of metastasis to the brain. I'm proud to say I was able to slowly get myself from the couch to the gurney. But you know how hard I've tried to avoid having to call for an ambulance all these years.
I heard my daughter's description to the paramedics of the episode: She saw me lean forward and start to cough. Then I suddenly slumped and began making a weird noise. My upper torso, neck, and head began shaking and jerking about a little bit. She kept saying, "Are you okay? Are you okay?" over and over until I finally answered. She, too, thought it was a seizure, but she saw no rigidity in the lower body; nor do I recall any.
She had already called and told my oncologist's office that I had had some sort of seizure/loss of consciousness and was being transported to the hospital. I picked the ER closest to my oncologist's office, even though that hospital has almost killed me a few times before. I waited on the gurney with the paramedics while the hospital cleaned up the lake of blood in the doorway. After almost 20 min, I was finally admitted into the ER.
They ran an ekg of the heart, drew blood, and sent me for a CT scan of the head (brain). After ruling out any bleeding in the brain or major problems with my blood work, they told me I had had an episode of syncope (sin-coe-pee) and could go. I was incredulous that I wasn't being admitted into the hospital; I'd known last night that's where I needed to be! "You mean you aren't even going to do a chest x-ray?" I asked, still completely incredulous. "Well, we are only here for emergent care; you'll have to have cancer staging done by your regular doctor."
Well, I can't MAKE the hospital admit me, now, can I? So I settled for calling and getting an appointment with my oncologist (for Tuesday). By now, it was after 5 p.m. on Friday night. I knew I better just take it really easy and try to get through the weekend until I could see my oncologist.
So Saturday rolls around, and my hiking buddy shows up to see if I want to get out of the house and go for a ride at all. Yes, please!!! Being bedridden is so boring! So she fixed up a comfy spot for me and tucked me into the motorcar. Where shall we go? Well, since we're NOT climbing Mt. Williamson today, maybe we'll just take a cruise out Angeles Forest and Crest Highways. The wildflowers should be out, too. And we can investigate if the road is still closed at Islip Saddle.
It was 1:30 in the afternoon before we hit Mt. Emma Road (on the NORTH side of Mt. Williamson). I knew it would be at least an hour or more before we saw those mountains again---from the south side! Boy, was I off in time estimation. It was almost 4:30 and we still weren't at the junction of Angeles Forest and Hwy 2! So as you can guess, we were having fun taking a ton of wildflower and vista pictures all along the way. After all, it's not really the destination---it's the journey.
So we curtailed our picture taking and drove to Islip Saddle, where the road is indeed still closed. The view was beautiful, and I couldn't resist walking a bit of the PCT up Mt. Williamson. We could look out on the South Fork area of the HiIgh Desert Trail and see all the way to Black Butte and El Mirage lakebed in the distance. It was tempting to continue higher, but I could tell this was no time to push, so I turned around at the first bend. Downhill was so much easier!
I was exhausted after all that, so my buddy drove me straight home. We didn't even stop for dinner. So we will have to take a raincheck on really climbing Mt. Williamson. Enjoy the pictures from the day; as usual, click on the picture to see the larger version.
Roadside lupine.
Tujunga Reservoir.
Sweet broom.
Paintbrush.
Mountain lilac.
Looks like a nightshade.
A view from Highway 2.
The view from Islip Saddle (El Mirage Dry Lake in far distance).
Manzanita in full bloom.
The Pacific Crest Trail at Islip Saddle heading over Mt. Williamson.
View from the first bend (looking out towards South Fork, the High Desert Trail).Tuesday, April 21, 2009
Springtime in Appalachia
Mt. Mitchell
Highest Point East of the Mississippi
Highest Peak in the Appalachian Mountains
6,578 to 6,684 ft elevation
1/4 mi trail to Summit (~11% grade)
Recently we had the opportunity to enjoy Springtime in Appalachia. The redbuds were out everywhere, and the dogwoods were coming out at the lower elevations. Our visit wouldn't have been complete without conquering a peak while we were there.
Fortunately, that proved rather easy to do. The highest peak in North Carolina, the Appalachians, and east of the Mississippi is Mount Mitchell in the Black Mountains subchain. The Blue Ridge Parkway takes one to Mount Mitchell State Park; a 300-m-long trail takes one to the summit at 6, 684 ft. An observation deck was recently (re)built, opening in Jan of this year.
Heck, this one was so easy, my nearly 74-year-old father was able to accompany me and do a little "hiking for hope."
And of course, I was slower than him!
Click on any picture to enlarge.
Blue Ridge Parkway Overlook
(looking toward Table Rock, NC).
Highest Point East of the Mississippi
Highest Peak in the Appalachian Mountains
6,578 to 6,684 ft elevation
1/4 mi trail to Summit (~11% grade)
Recently we had the opportunity to enjoy Springtime in Appalachia. The redbuds were out everywhere, and the dogwoods were coming out at the lower elevations. Our visit wouldn't have been complete without conquering a peak while we were there.
Fortunately, that proved rather easy to do. The highest peak in North Carolina, the Appalachians, and east of the Mississippi is Mount Mitchell in the Black Mountains subchain. The Blue Ridge Parkway takes one to Mount Mitchell State Park; a 300-m-long trail takes one to the summit at 6, 684 ft. An observation deck was recently (re)built, opening in Jan of this year.
Heck, this one was so easy, my nearly 74-year-old father was able to accompany me and do a little "hiking for hope."
And of course, I was slower than him!
Click on any picture to enlarge.
Blue Ridge Parkway Overlook(looking toward Table Rock, NC).
Same view, higher up the Blue Ridge Parkway.
Licklog Ridge. No kidding.
Looking toward Table Rock from Licklog Ridge Overlook.
Think this tree sees some wind?
Looking toward Tri-Cities from the parking lot.
Parking lot panorama.
We were blessed with a beautiful day; a jacket was enough. 
Still icy up here. Should've videotaped those ice polliwogs!
A very easy summit (but good for my lungs nonetheless).
Looking toward Tri-Cities (TN-VA border).
Looking toward the ENE: Spruce Pine to Table Rock et al.
Looking toward the ESE: Lake James to Marion, NC.
Looking WSW toward the Smoky Mtns of East Tennessee;Clingman's Dome in the distance.
Looking down at the trail. Very easy and nice.
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