Time for hospice and Im really scared
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Thank you, Linda! Isn't it great when you get an unexpected good day? I was just thinking this .m. that I felt pretty good today too....then I remembered tht it is chemo day in two days, on Thurs. . Sooooo it will be back to the bottom of the barrel again right quick. Guess I better enjoy this while I can. I'm getting tired again just thinking about it.
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So, How are you doing, Teri? I am anxious to hear about the new onc and what she had to say.
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Teri, congratulations for flunking hospice! That is indeed an achievement to celebrate!
Hoping that your discussion with your new doctor went well, and joining the chorus of voices around the world in sending you best wishes and hopes for excellent news!
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Teri,
I had this dream that we had a big party at your house and all the folks from this thread were there. Everyone had traveled from all around the world. Of course, when I woke up I realized it was not true - but it was so incredibly vivid. We are really there with you. I am copying something Arlo Guthrie wrote about Pete Seeger -- and how close he was to him emotionally even though far away physically. I hope you feel visited by your big computer community as we are all rooting for you and hoping that your appointment went the way you wanted.
Janet
Pete Seeger: I usually do a little meditation and prayer
every night before I go to sleep - Just part of the routine. Last night, I
decided to go visit Pete Seeger for a while, just to spend a little time together,
it was around 9 PM. So I was sitting in my home in Florida, having a lovely chat
with Pete, who was in a hospital in New York City. That's the great thing about
thoughts and prayers- You can go or be anywhere. I simply wanted him to know
that I loved him dearly, like a father in some ways, a mentor in others and just
as a dear friend a lot of the time. I'd grown up that way - loving the Seegers -
Pete & Toshi and all their family. I let him know I was having trouble
writing his obituary (as I'd been asked) but it seemed just so silly and I
couldn't think of anything that didn't sound trite or plain stupid. "They'll say
something appropriate in the news," we agreed. We laughed, we talked, and I took
my leave about 9:30 last night. "Arlo" he said, sounding just like the man I've
known all of my life, "I guess I'll see ya later." I've always loved the rising
and falling inflections in his voice. "Pete," I said. "I guess we will." I
turned off the light and closed my eyes and fell asleep until very early this
morning, about 3 AM when the texts and phone calls started coming in from
friends telling me Pete had passed away. "Well, of course he passed away!" I'm
telling everyone this morning. "But that doesn't mean he's
gone."
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I am just catching up with this thread...I have lympahngitic spread. I was diagnosed in June, but it was there as far back as April. They gave me 3-6 months on average and I'm still here!
I tried Cytoxan and Gemzar. The LC decreased and slightly increased..
Now I'm on halevan, & I just started so we shall see?!?
I cannot find anyone with LC. I hate that we are here! I can't believe you were kicked out of hospice???
Hoping your doc appt went well and they are making a new plan.
My palliative care doc (been seeing him for 3 years) is very grave about lc. know the stats. I just had to tell him to focus on managing my pain not my future. He was wrong with my life prognosis more than once.
How are you? What is your cough like? Do you cough a lot? Do you suffer from mucous related cough?
What are you taking to relieve your symptoms?
I'm sorry I barrage you with questions. This LC spread is so isolating and as much support as I have in the mets community, I feel all alone with this:(
Thank you and hugs, Lynn
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(((((Terri))))) waiting for your news! Hospice over, new MO.. Lots going on
Lynn you are so right, focus on the pain & not the future! Ugh, wish some MOs knew better..
Linda, I am so glad you had one of those "normal" days.. Feels great! One actually forgets about this c_crap even for a while!
Cindi, enjoy the snow.. I like how it covers everything like a blanket.. Of course sitting warm inside, just watching from the window..
Maybe some know this.. No snowflake is alike, like the fingerprints.. Probably few know this.. That it is believed that an angel is assigned to carry it's snowflake down from the sky and this is it's sole job in it's life.. Just waiting for it's turn to carry it's snowflake down eagerly.. I find it so magical about watching snow.. Then think, what isn't in this crazy world ?
Hugs all
Ebru
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Terri, hope the doc appointment went well. You'll prove, no doubt, there's life after hospice! You go, girl!
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Hi Teri girl! Hope your appointment proved as good as you hoped. Wishing you to be pain free today.
Love n hugs. Chrissy
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Good morning Teri!
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Good Morning Teri -
Hoping to spot Deuce today - my snowy back yard has some unusual tracks, maybe goat-like? Anyway, I hope you are well and learned good news on Monday. Our thoughts are with you...and the force too!
Amy
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Everything is easier with the help of friends
Hope this makes you smile!
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H-LYNN - welcome to this thread! While we all stepped in in response to Teri's original post, be sure you will be folded into this circle of friends from all-around the world. You really are not alone. We care very much about Teri as she struggles with her health and we think about her each day whether we post or not. Cindi joined more recently and our daily thoughts envelope her as well. I send you cyber ((HUGS)) and wish you a comfortable day. You sound like such practical woman. I admire that.
Teri - As others have said, I hope you got some answers. If not, I do hope you will go in search of a more empathic doctor.
I have been curious, What do you think did happen to Deuce? How did he slip away? I've had horses and they can jump fences, although mine never did, and they can slip through pasture gates or stall doors that people mistakenly fail to fasten - that's happened to me, and I know that small animals can crawl under and through bars of fences as I have seen them do it. Once out, would he be likely to head to a farm or where other animals live?
Funny lost animal stories just to pass the time - My husband found a stray horse once. It was happily grazing in our local horse show grounds in off season and, it turned out, had been there for several days. He and a neighbor who was also concerned, former TV actress Stephanie Powers from the old series Hart to Hart, were able to catch it and put it in yet another neighbor's pasture until my DH located its rightful owner who took it home. It seems it had gotten out while its young owners were at the hospital having their first baby. The local feed store had noticed the horse gayly galloping by its door, tail in the air as they described it, some days before and had wondered about it, but done nothing. Apparently the new parents were so overwhelmed by their baby that they completely forgot about the poor horse and hadn't noticed that it had been gone for three days. The poor young hubby got in a lot of trouble with his wife as he was supposed to have been taking care of her horse. Oops.
Another time, I was awakened at 3 am by a policeman knocking at our door wanting to know if one of our horses was loose as they were trying to catch one running around on a nearby main road. I knew it wasn't one of ours as they were all in the barn which was behind a closed gate. I know how hard it can be to catch a horse, so I offered to help. He accepted. I threw on barn clothes, grabbed a halter and bucket of grain to lure it with and hopped into the back of the police car which turned out to be surprisingly tiny and quite tight for someone holding a big feed bucket in her lap. When we got to the scene it was hilarious. Three or four police cars had surrounded a small, trim horse which stood in their headlights. A tall, burly policeman had somehow found an enormously thick hawser rope, like something you might tie up a ship with, put it around the animal's slim neck and was trying to lead her off the road, but she was having none of it. Horses are not accustomed to being led by something around their necks like a dog, so she planted her feet and was refusing to budge an inch. They were at an impasse. I went up to her and began stroking her neck and talking with her and offered her some grain before I tried to slip the halter on her head. Even with all the headlights it was still pretty dark so I hadn't gotten a good look at her. My hand brushing across her mane found that it was clipped off. I knew immediately that she was a polo pony which has gotten loose from the tents on the polo grounds about a mile away.
As I put the halter on her and led her to the side of the road I told the police to call the barn associated with the polo club and let them know that one of their horses had gotten out and that we would be walking it back over. To our surprise, the barn rudely denied that horse could be one of theirs and hung up. I had them call again as there was no doubt that the horse was one of theirs - nobody else around here had polo ponies. This time the barn got hostile, even though the police explained that the horse was undoubtedly a polo pony as it had a roached mane. The barn told the police that they "would not be allowed on the property", and to not bring over the horse. Interesting response at 3:30 am. We had to wonder why, and what it didn't want people seeing. Meanwhile what to do?
I told the police that if they escorted me home with the horse we could put it in a stall at my house until its owner called them to report it missing, as no doubt would happen as polo ponies are costly, but that I would need help emptying the stall of all the political signs being stored in it. So, I ended up walking the stray horse home down the highway through the warm summer night at 4 in the morning with a police car in front and another behind me both with their lights flashing. Lots of people passing by paused to take a long look - we are a summer resort so people party late around here. I was interested to discover that police lights must have rheostats as they were able to dial them down in intensity so as not to scare the horse.
Once at my barn, we emptied the stall, put in hay and water, and settled my unexpected barn guest in for the remainder of the night, much to my own horse's intense interest. I should have taken a picture, but didn't. She was surprisingly small - maybe 14.2 hands high at the top of her shoulder, very pretty and super fit with not a spare ounce on her - talk about a flat belly! She was dark brown in color, a shade that horse people call a liver chestnut, and she had a small white star on the forehead. I could still see a sweat mark from a saddle that remained even through I knew she has been washed off after being ridden. I had to sign some papers and give the police my phone number, but just as I expected, by 8 am I got an anxious call from someone wanting to know if I had found a horse. The guy turned up with a trailer to get her eleven minutes later. I timed him. Turns out the mare's name was Somba.
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Popped in to let you know, Teri, that I am thinking of you and hoping that your MD visit was helpful.
Appreciate so much all the compassion and wisdom shared within this discussion--regarding Teri, other people who face challenges and our nonhuman animal friends, too.
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Hortense, I want to know the rest of the story...was it a polo pony from the barn who treated everyone so rudely? Thanks for sharing.
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Well, I had my Dr appt Monday and a CT Tuesday and I'm not sure if I should start a different thread for this. I got some bad news. I have progression in my lungs which I expected, I guess. But also 10 tumors in both sections of my liver and a boney lesion in my L4 vertabrea. I have very little back pain, especially my lumbar area so I don't get that.
What do you guys think? I always thought the liver was the worst place it could go and the fastest moving. Am I right? I figure you guys would know faster than me waiting for my follow up appointment next Monday.
Thank you. May you all be having a SE and pain free day and keeping warm (or cool if you're an Aussie). Love you all.
Teri
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Oh Teri, that's a blow. I'm sorry you got bad news. I can't answer for the liver I'm afraid, but someone with more knowledge than me will be along soon. What was said? Have you been offered any treatment or relief? Or is that what Mondays appointment is about? One good thing is that your sure to get plenty of information here first, so that you can go to Mondays appointment armed and ready for action!
In the meantime, I hope it didn't tire you out too much having the 2 visits in 2 days, and that the wait until the next one isn't too stressful. I'll be thinking of you, as always, and hoping that your doctor is coming up with a good plan.
Nicky
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Hi Teri,
Sorry to hear your news. I don't know about pain and bony lesions. I apparently have bony lesions from my skull down to my pelvis in just about every bone that there is. I was having pain (which I thought was muscular or something else weird - never considered this) before I found the lump. But over time on treatment, the pain has resolved and was apparently due to fractures that are now healed. So you can have bony mets without pain.
So today it rained here. At least we did not get the ice pellets they predicted. Does anyone know the difference between ice pellets and hail? I always thought it was called hail. Apparently we are due for some more of what the weatherman calls "precip" this weekend. Enough already. Why didn't somebody hold an umbrella over that silly groundhog so that he would not see his shadow.
Had my PET/CT yesterday. Test was pretty uneventful - will find out results at my appointment on Monday. Not expecting anything exciting - they just wanted to do it because I am changing treatments and they need a new baseline.
Janet
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Aw crap, Teri, sending you loads of gentle hugs. ❤ The ladies out here will be along soon, no doubt. It's almost noon over here already.
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Crap, indeed. ((((Teri))))
Don't know about liver or lung lesions. I do know a friend of mine had extensive bone mets without pain for 7 years.
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Oh Teri, I'm so sorry. I can't help but how do you feel about this? Do you want to continue treatment? Is there treatment available? Everyone is different. Prayers my dear friend.
Donna
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I am sorry to hear that your "intuition" was correct. I don't really know, at this point, what you want, but neither do I understand your options. Still thrown by your hospice team removing themselves from your life. What are your options? What do you want at this moment?
As you know, I think whatever you decide is right. Just think you have been dealt a few wild cards here in the last week and can't imagine how you are processing all of this new information.
Me? I am off to have my butt punctured again. Need to decide which snow boots will work best out there.
*susan*
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Hot damn Teri! That's not the sort of news we were hoping for you!
It is definitely possible to have bone mets without pain. It's hard to say how fast the cancer can take over an organ particularly if you are getting a treatment that works for you but if you choose no more treatment that question really can only be sort of answered by your doc. We are all different and so are our cancers.
Not much help I'm afraid but I do hope you can get some promising news from your doc on Monday.
The verdict is in and I am officially deaf in one ear so now begins the journey to get my hearing aide........oh what fun!
Trying to stay cool as we are in for anther week of heat.......Yuk!!!!! Roll on Autumn!
Love n hugs. Chrissy
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Hi Teri--
So sorry to hear about your report. I was diagnosed with lung mets a year ago, and have added bone (one spot) and liver (one spot) to the list since. I've been on Xeloda since November (1000 mg twice a day, on a 14 on/7 off schedule). No scans yet, but my liver numbers have been dropping as has my tumor marker. SE's haven't been bad so far, and just knowing it's working some is encouragement to put up with whatever might pop up. I see from your profile that you haven't tried it yet- maybe it would be an option? My MO switched to that once my liver was involved. There is some kind of coupon/co-pay card available that helps with cost- my MO's office took care of those arrangements, so I don't have those details. Good luck, and know that we are here for you and with you! (((hugs)))
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Teri,
Sorry to hear the bad news. I had a small spot on my liver that disappeared with Xeloda and hasn't come back. I have several lesions on my thoracic spine and they do cause me pain, I'm glad that yours isn't. I wish you luck with your follow up on Monday. Have you ever had Xeloda? I found it pretty easy (pill form) - loss of appetite, some minor hand/foot problems, but it only worked for me for 3 months.
Lynn - I also have lymphangitic spread in my lungs. I started having symptoms last January - dx first with pneumonia, then the docs thought it was possible radiation pneumonitis. Finally, when I had a biopsy in May they discovered it was cancer (docs wanted me to have a biopsy earlier, but I was in the process of selling my house and moving in with my fiance!) I responded to carbo/gemzar for about 4 months, then Xeloda for about 3, but both failed. Just started Ixempra and am looking into clinical trials.
Laura
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Also curious about whether the polo pony belonged to the people you suspected it did. I'm guessing not or you probably would have said so.
I've always called falling frozen rain, sleet and falling frozen snowballs (that often occur in the summer) hail.
Teri..sorry about your news. I've had numerous bone mets since 2009 with no symptoms. Not sure about fast vs slow growing with liver mets..but I've also had numerous diffuse liver mets since 2009. I only recently got curious enough to ask what "numerous" meant. In my case the answer was 10+...the largest of which just shrunk from 7.5 cm to 6.8 on doxil...for what it's worth.
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Yes, the polo pony did come from the people I suspected as they were the only ones who had polo ponies at the time - little Somba was as dark as the pony on the left in the top picture below. Now, some years later, we seem to be infested with polo fields and polo clubs. It's like Ralph Lauren ads come to life and run amuck every summer. In fact Ralph Lauren's top male model was hired after he came here to ride on one of the teams. He's in some of the pictures in the links I posted. Polo here is much more about the scene than the game - celebrities, politicians, masters of the Wall Street universe, and hopefuls of all stripes show up just to be seen. They do not actually watch the game. The weekly events are sponsored by companies like Mercedes Benz, Ferrari, and various private charter jets groups who would be happy to fly anyone interested in for the day … for a price. Admission is free, but by invitation only. The links here might amuse anyone interested:
http://www.businessinsider.com/bridgehampton-polo-...
http://guestofaguest.com/hamptons/category/bridgeh...
http://www.patrickmcmullan.com/site/event_detail.a...
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Ha! It's usually the one who protests the loudest who's guilty! Sometimes wouldn't just love to rub their noses in the horse do-do?
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Teri - I didn't mean to be disrespectful by posting silliness. I just thought it might be harmlessly diverting. I hope you are not offended. I am thinking about you every day and hoping that you are finding some answers to your recent questions. I found several lung mets threads on this website and it seems that some experience pain and some don't, and that people were taking a wide variety of meds for them. There were a number of people who had had lung mets for years, and even a reference to one who had them for 10 years.
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Hi, Teri,
It sounds like you might have been somewhat prepared to hear about the lung progression but not have been expecting to hear about the status of your liver and bones. I'm sorry you got hit with that news. You certainly have experienced a whole lot of change in your life since you first started this thread almost six months ago, and I imagine you may have some interesting options to consider. In the beginning I think you said you just could not do another chemo regimen, and I am wondering whether you are rethinking that as a possibility now. Along the way you sounded as if you had found some sort of peace with regard to not pursuing further treatment and to focusing more on a certain kind of quality of life. You will never know whether focusing on other aspects of life and not on "aggressive" treatment allowed you to exceed your doctor's estimate on your life expectancy, but that is certainly what you did. (And yes, we could have a whole other conversation about estimates on life expectancy.) And you will never know whether "aggressive" treatment might have changed your status today. It's so hard to make the "right" decisions when some of the information we might want will never be known to us.
I realize you were shocked to be discharged from hospice and I wonder whether you would want to pursue hospice again if you decide no more treatment for you. It's possible that your former hospice provider would consider readmission or a different hospice provider would consider an admission given your new information. Your next appointment with your MD may help you to become clearer about your options, and maybe that will help you as you reconsider what you want to pursue in your life at this time. Regardless of your choice, we will continue to offer our support and feedback. Thinking of you....
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Teri -- Go with your gut feeling. Sometimes we just never get enough "information" to make an educated guess and you have to go with intuition and heart/gut. Really at this stage of the game, there is no "wrong" there are just different paths. I wish you peace with what ever treatment decision you decide is the best for yourself.
Watch the snow fall and enjoy our winter wonderland, rest your mind and sleep well. It's snowing really hard where we are 8pm, light flurries all day. Sooo lovely! Even my Border Collie Tess loves the snow and her huge round dog bed! It is 19 degrees and she is ready for warmth! I am sharing because I know you love dogs.
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