peritoneal carcinomatosis
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Oh dear Hummingbird, you too are facing progression and living with increasing discomforts of the bodily type.
While I'm saddened to hear this, I'd rather know how you are than to wonder what's up.
Hummingbird, I'd like to ask you a very personal question - how do you know when enough is enough?
I often witness people pursue ever more aggressive, expensive, physically taxing and time-consuming treatments as their cancer progresses. This includes "Hail Mary Passes" of alternative treatments in far flung and expensive places.
My personal impulse is to do the exact opposite, to pull back from medical situations and interventions that would take me away from the life I love so much. I didn't exhaust chemotherapy and clinical trial options before going on hospice. For me, quality of life includes keeping away from intense medical places and experiences.
I wonder if others feel more comfortable and well cared for and hopeful when pursing increasingly aggressive treatments as death threatens.
Now, symptom relief, I do understand!
A year ago today, I was at the local hospital having an indwelling ascites drain implanted. It's dramatically improved my life.
btw, I'd say my gut area feels bruised, like I did a hundred abdominal crunches after not working out for many moons.
Does anyone else experience this sensation too?
Hummingbird, no need to answer my question, it's just something I wonder about here at bco and in my local cancer friends.
Sending loving, healing light to surround your mother and you, Hummingbird, Stephanie
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Stephanie, I do not mind at all answering that question. In January, I was so horribly sick and in excruciating pain (you were so thoughtful and caring - you always are!) and I thought I would never feel better. But I kept on with treatment and tried Taxol. And it worked! Although it didn't work for more than around 4 months even though I was on it for 6 months, it reduced my symptoms tremendously and I was able to live again. At this point, I know things are very progressed and I'm very realistic. But if this clinical trial drug or another chemo can do what Taxol did for me, even for another 3 to 6 months, I am willing to try. Some of it is palliative - to reduce symptoms before they get even worse - and, of course, I'm just not ready to stop. Yesterday my Mom got her scan results too and she has had progression too, but luckily not anywhere near as bad. I was so glad that I was there with her, to ease her fear as she got teary when her MO told us and then to help her understand what her next treatment would be like. I held her hands as she got her first Faslodex injections. And she was fine. So I know some of the desire to just keep searching and hoping is also to keep being here for my family and friends. If I stop treatments now, I will not have much time. I am progressing quickly. Its not that I want to pursue more aggressive treatments at all. Just want to try what is available that my MO thinks might work for a while. Nothing crazy. Thank you again for thinking of me and my Mom too. You know I am always hoping you are as comfortable as possible. You are an amazing lady!
Artist, thank you and you are totally right! This does suck!! So glad we can be honest here. I was so excited to hear your mostly good scan results. And yes - you need to just relax now. I know your school year is already starting. The summer flew by!
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Thank you for giving to me, Hummingbird!
It's so helpful to change perspectives regularly and understand you and others better.
Widens my heart.
Hummingbird, you too are an amazing lady and I've come to care about you deeply!
Care about your mother too and I've only met her through you.
Holding you both in warm and tender light, Stephanie
More tender, warm rainbows for all!
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Stephanie, thank you so much. I just realized you had also asked if anyone has a sensation of bruising in the belly. Yes - I do! And also, if I breathe in a little deeply - that bruising feeling gets worse.
Hope everyone can enjoy the day in some way. I'm already at my cancer center to consult about thatclinical trial I'm thinking of starting. I have a few questions for the doctor!
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Hi Hummingbird,
Just linked to this topic for Lita and realized that I forgot to thank you for your response to my bruised feeling belly question.
THANK YOU, HUMMINGBIRD!
Not really yelling, just exclaiming how relieved I feel not to be all alone with this odd symptom.
At least the anxiety of loneliness isn't adding to the discomforts of bruised belly, ascites, swollen liver, etc.
Sending warm, glowing, healing light for you Hummingbird and all our peritoneal sisters.
Loving kindness, Stephanie
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Hello All! Wonderful Stephanie gave me this link. I have had lobular breast cancer since 2002 but metastatic since 2012. I developed gastroparesis the summer of 2014 but it took until December of that year to diagnose spread to my abdominal wall. I underwent treatment first with Gemzar which effected my liver and then to Navelbine which after trying to kill me, kicked the cancers butt. During that time I had ascites and paracentisis numerous times. I also got to experience a partial bowel blockage. Thank goodness it only happened once. I spent a good part of the time on a semi-liquid diet (thank goodness for Atkins shakes) and lost 60 lbs. I went off Navelbine and have been on Letrozole/Ibrance since June of 2015. I recently started having abdominal pain again--severe gas pains, feeling of fullness and vomiting. Not only do I have the problem with lobular not showing up on scans, I also don't have tumor markers that change. They have stayed around 25 to 30 the whole time. I was only diagnosed before because they finally had enough ascites to test. It showed "strands" of cancer cells. Thank goodness I have the same oncologist now so I don't have to go through trying to prove cancer. He just knows it is. Just had a PET scan but am assuming it still won't show cancer. One of the meds I took was Domperidone (Motilium). My G.I. doc gave me a prescription through Canada. I'm not sure I can get it this time around and am wondering how many of you take Reglan and have you had side effects from it. I don't know what the future holds for me but I am so glad to find you. I spent the day reading this whole thread and your strength uplifted me. I also felt saddened by what you are all going through. I can relate. Sorry this is so long. I'm sure I misspelled a few words too. So much going through my brain. I knew this day would come but hoped not so soon. Love and hugs to all of you. Cathy
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Hi Cathy,
So happy you made it here where are there are others facing similar challenges.
I don't have ILC, gastroparesis or bowel blockage, so I can't help you there.
I do have an indwelling catheter to remove ascites, so no more paracentesis procedures, but this wouldn't be a solution for everyone else.
For many months I've taken Zofran and Reglan for nausea and even half a pill at a time is effective for keeping them at bay. So grateful.
Reglan does cause my stomach to empty faster, something I don't want as I've plenty of existing problems from rapid transit of the GI tract. A good time for me is digesting food for a day, not a few hours or even minutes.
Friends, I hope you too enjoy Cathy - she has great senses of humor and camaraderie. Plus she takes great trips and we like the same music!!!
Ask her, she's a fun story teller.
Be well my peritoneal friends, Stephanie
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HIPEC, super intense, high heat chemotherapy flushed into the abdominal cavity, is an interesting approach that my friends with ovarian and colon cancer have experienced. They praise it for their ongoing existence, but blame it for their ongoing aftereffects. Theirs is a love-hate relationship with the treatment.
While we're unlikely to pursue it for for our MBC peritoneal mets, this website has helpful information and illustrations about peritoneal mets.
HIPEC for peritoneal cancer: patient information
Big warm healing hugs for everyone, Stephanie
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Hummingbird, I hate hearing that you are experiencing rapid progression and generally feeling unwell. I am praying that the clinical trial you are considering helps you tremendously. I think about you ladies every day.
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Cathy, Hi and Welcome to our small but very supportive group!! I'm so glad you found us and joined in. I don't know what I would do without the sharing on this thread. I have learned so much from these wonderful ladies.
Tomorrow I am going for my first Paracentesis. The ascites keeps increasing and I have also started up again with bowel problems causing a lot of discomfort. I know you understand that feeling well!! Last week I started on a clinical trial, but became sick from the drug the first night and had to stop until tomorrow. So, after the paracentesis, I will begin the trial drug again - but this time with anti-nausea meds in advance. Hopefully that helps!
Stephanie, you brought a smile to my face - thanking me in all caps!!! Of course I knew you weren't yelling! You are too kind to yell. And thank you for the website on peritoneal mets. That cleared things up for me.
Artist, I keep going and if the trial doesn't work - I will try something else. Thank you again for your good wishes and for thinking of us here. You are always in my thoughts too. I have wanted to join in on the liver mets thread, but I hate to be a bummer there. I don't want to scare anyone there! LOL Here I can be very honest because I feel we are all going through the same things. But if I get any good news, I will post there too! I hope your new school year is off to a very good start!!
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Hello Hummingbird4! It's wonderful to meet you. I'm so sorry for what you are going through. I understand exactly why you keep trying. I am too. I promised my daughter and my husband that no matter what, when the cancer finally beats me, they will know I did everything I could possibly do to stay with them for as long as possible. I decided a long time ago that how I handled this fight was part of the legacy I was leaving my daughter--to live through the adversity with as much joy and love as possible. I'm 62 but I still love to dance so no matter where we are, if I hear a song I love, I will bust a move!! Embarrassing for her I'm sure but she sees the joy and will remember that more than the embarrassment (I hope!) LOL By the way, Amanda is 35. When I went into remission? 15mos. ago, my husband and I bought a home with an apt. so that Amanda and her husband, Josh, could live with us. I've spent the last year having so much fun spending time with them. My husband's company moved us all over the country for his job. I found out I had gone to stage IV in upstate NY. It took another 18 months before I could get back to Washington state. I live in North Everett which is by Puget Sound. Our little house has a view of the Sound from our back yard. I feel complete joy every time I look out and see the view. I am also making sure they all have each other when I pass. I will send love and positive thoughts that you get the help you need. I am holding out hope for both of us our docs have found the treatment that will again buy us some positive time. LOVE and HUGS, Cathy
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Welcome Cathy! Join in the group. I have lobular CA and mets to abdominal wall, omentum, bowel, stomach, liver, lung and bones. I have had ascites since May of last year and have had many taps before I got the implantable drain. I pull off liters of fluid a week and have for a year! I love this drain. On drain days I can eat normally and feel like a regular person, plus the endless fatigue from weekly chemo. Just getting that extra pressure off your gut is heaven. You can poop better and the only side effect is that it makes me thirsty and sometimes my belly aches and kind of hurts. I kind of hurt anyway so I take pain meds. Kick it back and they help.
Interesting that your markers don't move. Mine are super sensitive and when the chemo and meds stop working the markers jump and they correspond to my scans and symptoms. It's amazing how accurate this 35$ tumor marker test is for me. I don't see any reason to do a scan since I can tell from symptoms, increased ascites, pain and numbers if the cancer is advancing. I did get a MRI of the head for diagnosing N/V but I think it was bowel related/ ascites and sloshing caused the N/V. The brain scan was clear. I have gotten car sick and never did before. I keep pretty much to home as everything makes me super tired. But if there is an activity I think I can do then I try. Lucky you to have your daughter and SIL right there with you! What a blessing. I have a 15 year old, 20 and 22. I know what it's like to keep trying. How wonderful you like to dance and I know where you live it's so beautiful there!!
Hummingbird- good luck with the paracentesis! You will feel so much better afterwards. I just couldn't believe how much better I felt and wanted them to do it every week. They won't and that's when I opted for the drain placement. The week they put it in, they drained 3 liters on Tuesday and then put it in out patient surgery and drained another 3 liters off! It was heaven to finally stop feeling like a water balloon. Now I can get the fluid off at home and don't have to go anywhere! The fullness and nausea goes with the fluid... bye bye. I hope this new clinical trial works for you fingers crossed the anti nausea meds help ease the chemo drugs. Prayers your way.
Hugs to us all.. and lots of love too.
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Dear Rosevalley, The implantable drain is a wonderful idea. The most I ever had taken out at one time was 7 liters. I remember after the procedures I would feel internally bruised. It's like one minute your abdominal organs are floating and then they are hanging. It's also one heck of an instant diet plan. But by the next day it would feel wonderful to have the fluid off. So sorry you have so much involvement. It must be very painful. It's good to be able to poo, isn't it? I hope you have a chance to have wonderful moments with your kids. My daughter and I took a trip to Houston in May for a friend's engagement party. Since we had both wanted to see New Orleans, we decided to take that opportunity and go. We had such a wonderful time, just the two of us. With the help of lots of meds, I walked all over the French Quarter--we did a ghost tour the first night. We took a small tour bus on a tour of New Orleans and had the chance to eat beignets-- YUM; had a chance to see one of their wonderful cemeteries and the last day we went on a tour of the Oak Valley plantation just outside of town. These are the things that keep me going--making memories with my family. I didn't feel so great while we were there though and was pretty sure something was fomenting again in my abdominal area. But all things considered I did extremely well. Hope you are having a good day. I'm having my first atkin's shake of the day. I cheated yesterday and had one chicken enchilada. So far so good. Love and hugs, Cathy
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Cathy and Rosevalley, Thank you so much for your concern and good wishes. Cathy, the view from your back yard must be so beautiful and calming. And that is wonderful to have your family there with you. Rosevalley, I keep hoping and praying that you do well with Gemzar. Yesterday, after spending a few hours at my cancer center, two doctors decided NOT to do the Paracentesis. They felt that the benefit didn't outweigh the risk for me. With scar tissue from DIEP flap surgery and a C-section, etc. and the location of the fluid filled areas, it was too tricky. They said there is definitely fluid to be drained and If it becomes more of a problem, then the paracentesis will be done. In the meantime, we hope that the study drug (which I'm doing OK now with) helps reduce the fluid. So good thing I went out on Monday and bought looser clothing! Again!!
Best wishes to all! You are always in my thoughts.
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Hummingbird you must be very brave. I can't imagine having fluid on that I can't get off. I am so miserable with it on. If they say you can get an implantable drain go for it. I thought once you have ascites that's it. It keeps coming back. Mine did none of the chemos touches it. With the drain I just take it off myself and I do a liter a day.
I got some bad news and not unexpected. My tumor markers jumped up to 1039. Gemzar quit working. I am not surprised. What surprises me is that I am not puking and can eat anything. The last time my markers were this high I had my head in bucket miserably nauseous and vomiting. So my sats on room air dropped to 93%, my ribs are clicking when I lay down and the fatigue is relentless. Cancer is winning. My oncologist wants to try anothe milder chemo and if it works great but if not then that's the end of the line. My 58th birthday is coming up so we will see if I get those couple of weeks. Might not be able to vote for Hillary.
Peace and great love to you all. This is a hard path.
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Ah Rosevalley, I am so terribly sorry. I hope your Dr. can turn this around for you and you will get to celebrate your 58th birthday. I'm coming up on 63 in October. Been fighting cancer since 2002. I can only imagine how tired and how much pain you must be in. You are one very brave woman. Keep fighting!! Hillary needs you more than ever! All my love, Cathy
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Oh friends, each of us is facing unique and daunting challenges.
Cathy, I'm so thankful that you got yourself over here and joined our little group. We're small, but mighty. And, like you, are kind, caring and able to offer pointers from our hard-won experience.
Rosevalley, though I'm not surprised by your news, it makes me want to go out and kick cola cans up the road. Can't, but I smooshed a big, dry leaf with a satisfying "crunch". You so totally deserve to feel better and better, not worse and worse. So glad you're not puking now, but better quality and quantity of life would be welcome.
Hummingbird, I'm worried about you. Rosevalley is right - the pressure of unrelieved ascites is intense. More of that bruised belly feeling we already have. I'm praying that your trial reduces the cancer, improves your quality of life and puts the wind back in your sails.
I couldn't face more medical interventions, though think I'd get evaluated by an interventional radiologist for a new indwelling drain, should this one ever give up completely. That would mean going back to the hospital for imaging and, if it seems possible, another $18,000 outpatient procedure. This drain has worked for a over a year and I bless it every day, babying it along as it seems to slowly becomes more clogged.
My big, slow news is more weight loss - now 96# at 5'6" and so weak. Also, sleeping a lot! Just woke from a 2.5 hour nap and yesterday I slept 17 of 24 hours. Today only about 14 hours - woo hoo!
My hospice chaplain didn't think I'm ready to die yet, because I'm still engaged in life. I begged to differ and told her that I am ready to die, but I'm willing to be put to good use as long as there's life left in me. I'm grateful I can be present to a few folks in person and more online.
I'm grateful for our little peritoneal group and the larger bco community.
I'm grateful for the change to participate in life as fully as able.
And I feel ready to die.
Just noodling, not being morose. Should take this to D&D topic, since most of the other forum 8 topics are for those still seeking treatment and quantity of life. This topic seems very accepting of our members' wide range of experience.
big virtual hugs everyone, wish we could be together in person, Stephanie
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Well ladies don't think my treatment is working. The acites is more at each draining and closer together. Think this cancer is winning! Will see the doctor next Tuesday. Thinking of giving up tired of not eating and the pain.
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Sallyk - Hugs my chemo isn't working either. Markers up, ascites up but I can eat. This whole thing sucks. Do you have a drain where you can take it off yourself? Makes a world of difference. I understand about giving up.. it's on mind too. It's awful spot to be in. Prayers for comfort to you. lots of love too for us all.
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My very dear belly buddies,
All I can say is crap crap crap and similar expressions of dismay! I've been out of the loop and I'll detail why, but I'm so sorry to read about these travails. In our situation, progress is a dirty word.
I had a wonderful cancer-be-gone party on July 17 - all of you were mentioned and were in my heart and mind as we recited the incantation. It was very moving - there was so much love and support. I realize this is really old news by now, but I still may try to post pictures at some point.
It was clear that taxol wasn't working for me, so it was decided that on July 21, when I would've had the next taxol infusion, that I'd switch to everolimus and exemestane. However, the insurance company refused to authorize the everolimus, and there was a big kerfuffle around that that lasted 3 weeks - didn't get the meds until Aug 11. So good ol' Wen got a change to wreak havoc in my gut without any kind of opposition, grrrr. Meanwhile, I was getting paracenteses once a week, and they were pulling off more than 3 liters.
I had a para on Friday, Aug 5, and then, just after midnite on Aug 6, I was in such pain that my husband, Morty, brought me to the emergency room. The ED personnel did a CT scan that showed anomalies in the small bowel. The reading radiologist thought it was enteritis, so I was whisked to an inpatient floor and given Reglan and IV antibiotics. Amazingly, the pain went away. It was decided to give my bowels a "rest," so I was on a clear liquid diet to start. ON Monday they did an other para and got 3 liters again. Since the ascites was accumulating so fast, a PleurX was installed, and I became a happy member of our little drain club.
On August 13, I was supposed to go to Philly to visit my 98-year old mom whom I haven't seen in way too long, She's physically healthy, but is far enough gone in senile dementia that it doesn't pay to worry her with my illness, so she really doesn't have a clue. There were other family events taking place at that time there, too, and I was really looking forward to the trip. So, we advanced my diet quickly and I seemed to be tolerating real food again. I was discharged on Thursday, Aug 11 and the visiting nurse came the next to show us how to manage the drain. Friday night we went out to eat with my niece and her daughter who were in town briefly from Florida. I took one look at the lovely bleu cheese bacon burger that I'd ordered, and realized that I couldn't eat it. I was feeling weird and weak and just couldn't eat. I knew I was in trouble and had to bag the Philly trip. grrr. Woke up Saturday morning and called the visiting nurse who told me to head to the ER.
So I spent from August 13 until August 25 as an inpatient. For the first week or so I was only allowed ice chips. Even swallowing the melted ice caused pain. It was horrible. They finally decided that I had a partial blockage of the small intestine. I kept asking them to give me reglan, but they were off trying all sorts of other drugs including steroids and antibiotics, all of which did nothing. Morphine did help a bit. It was miserable for days on end. On top of all that, I had the roommate from hell (not her fault, she was one sick puppy, in constant pain, too). I hit a really low place - it just seemed like this was going to go on forever and I'd never feel human again. "Kill me or cure me, already!" kept running through my head.
Eventually they stopped the antibiotics and steroids and came up with pain control that worked - a fentanyl patch (low dose morphine), reglan (!), and Prilosec for the acid reflux. IN addition, dilaudid as needed for pain. For whatever reason, dilaudid really works for me. Thanks goodness! In addition, it was decided that the everolimus/exemestane treatment wasn't appropriate any more, so I was switched to Adriamycin, which is a low-dose, frequently-administered version doxil. One of those "really good drugs," the oncologists like to tout. They installed a double-lumen PICC line in my arm. So now I have 4 tubes hanging off me - 2 for the PICC, one for the PleurX, one for the Port-a-cath in my chest. Just call me tubular. SO, they hydrated me, gave me a blood transfusion, started me on TPN (total parenteral nutrition), and dosed me with Adriamycin.
Here's the plan - Adriamycin once a week for 3 weeks and then a week off - should attack the cancer where it lives and, with any luck, clear up the obstruction, or at least make it less obstructive. Frequent draining (a liter a day keeps the pain away) should take pressure off the blockage. TPN will keep me nourished so I can limit food by mouth to things that easily make it past the blockage. Reglan 4 times a day, not for nausea but for motility, helping the small intestine do its work which seems to be compromised by the cancer. Prilosec to prevent acid reflux.
So my wonderful Morty, who is a mechanical engineer by trade, has now become chief nurse. I would feel guilty about this but cancer makes our caregivers feel so powerless. Helping me do the ascites draining and hooking me up and unhooking me from the TPN gives him something practical to do.
I'm home now, and so glad to be here. My friends are bringing me all sorts of wonderful soup concoctions. I've advanced my diet to mechanical soft, but I don't have much appetite. At least I don't have to worry about trying to keep myself nourished with mouth-intake. At this point, that would never work. My whole body is retaining fluid - I have stumpy, fat, old lady legs and ankles and my feet are gigantic. But with all that, I'm not currently in pain. I can enjoy time with Morty, and my home (no water view, Cathy, but a peaceful yard with trees and birds in a quiet, friendly neighborhood), and the visits of friends.
Life is good when it's not being sucky. At first dealing with the drain and TPN was a big learning curve. Now it's rather routine and pretty boring. How did we get here? No travels for us in the near future.
I'm 65 and still working full time. I work as a computer programmer for the hospital where I've been getting treatment. It's actually great. My latest project was for the Interventional Radiology Department, and those are the folks who do the paracenteses and who installed the PleurX and adjusted the PICC, so it was "family." They treat me really well and always fit me in the schedule. I'm quite grateful for that.
I asked my oncologist how long I could expect to get good results from the Adriamycin if, indeed, it works at all. She said months, not years. If I were really lucky, it could be as much as 12 months, but not likely any more than that. That brought up the whole "should I retire?" question. If we were free to travel (and I were condition to do so), I'd quit. But while we're kinda stuck around home, I figure I really enjoy what I do and it's important to have something that take the focus away from being sick. Luckily I can work from home, looking out through the trees and enjoying my comfortable home office. As much as they keep saying there are lots of other drugs to try, it really seems that when Adriamycin stops working (assuming it starts!), there aren't really many palatable options left. I'll have to weigh the cost-benefits. I'm for quality of life, not quantity. Living a few more months but not being able to function because of side effects doesn't seem worth it to me. But I'm not quite there yet - there's still hope that the Adria will kick in and buy me some time - so who knows what I'll decide when the time comes?
I was away from the thread for a long time and thinking a lot about these issues. It was sobering to come back and find that we're all in the same, small, unstable boat. But we're not sunk yet.
I'm very grateful for this group. It's so helpful not to feel so alone with all this. It would be so interesting to meet in person, but it seems like we're far-flung geographically. I'm in the Boston area, for instance - quite a way from Puget Sound. Ah well.
I send you all love and fervent wishes for a comfortable and pain-free existence.
-Erica
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Hi everyone,
After reading SallyK's recent contribution, I went back to the beginning of this topic and read all the posts by our less frequently posting members to refresh my memory of our six months together - two full seasons!
Sorry, Hummingbird & Rosevalley, I chose not to reread yours or my posts as I remember our stories and haven't pieced together the others' stories - Evelym/Evelyn, MustangIA, Judi1952, Sallyk, starbrightlyshines, YellowRoses, oriole, ShetlandPony, Livnonhope's mom, rara_avis/Erica, cs0600, retrocath and our supporter-friend artistatheart who I know from many places.
Waving hello to everyone!
Sallyk, you were looking at immunotherapy & an implanted drain. Several therapies had already failed you and you were having regular paracentesis procedures. Now you are thinking about throwing in the towel...is that right? I'm not a medical professional and don't really know much about your personal medical history. I assume you've sought second opinions about treatment possibilities and are ready for a rest - whether it's palliative care that allows you to continue treatments or hospice that requires you to stop trying to beat the cancer, so you can focus on feeling as well as possible. Both palliative care and hospice are focused on the needs and feelings of the patient and our carers, rather than the disease. It's a different orientation than the oncologists' but no less valid!
I was under palliative care from spring 2011 to autumn 2015 and have been on hospice since Nov. 2015 - 10 whole months!
I love being on hospice - having care at home, great relationships with my hospice team, the ongoing emphasis on how I'm doing. This morning my hospice social worker is meeting with my care circle to focus on their needs - self-care, care of one another, anticipatory grief. I'm so happy for them as I know they'll be uplifted and strengthened by being with difficult emotions.
Anyway, I think there are much worse routes to take than hospice (dying hooked up to machines in a hospital ICU is my personal nightmare - I used to be a volunteer hospital chaplain).
Dying at my country cottage with loved ones, including my hospice team, is my good dream.
SallyK, if you haven't already, please take the time to check out your local hospice agencies - each offers something different and the non-profit ones seem to have more better support than the for-profit ventures focused on their bottom $ line.
I'm starting to fade and really want to respond to rara_avis/Erica, but just don't have the focus now.
Erica, I loved rereading about your ritual plans this morning...then catching up on the progress of the wen and your frequent hospital misadventures this morning was both a nightmare for you and a dream-come-true of hearing from you for me. Thank you for sharing your recent experiences, even the tough ones. That's what we're here for - to listen attentively with open ears and hearts.
I so wonder how everyone who's ever posted in this community is doing. And our silent-listeners too.
How are you all?
Much love & more later, Stephanie
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Dear Erica, What a summer you have had! So glad you had such great hospital care. When I had a partial bowel blockage I had to get admitted through the ER. They left me sitting in the waiting area VOMITING for 2 1/2 hours. I got MRSA from my 2nd ER trip. I am trying to stay away from the ER as much as possible. lol I was one week away from telling my Doc that I felt so bad I just wanted him to stop and I would go into hospice. I was so sick I couldn't have my treatment that week. It turned out missing that treatment saved my life. I immediately felt better and realized the chemo was killing me at that moment and not the cancer. So my Doc kept me on the same chemo but not so often. The chemo did turn my cancer around and my system started working again. I had gastroparesis too. I can't believe how fast things change for us--good and bad. Not only are we dealing with the roller coaster ride of the physical changes of cancer but also the emotional ride can be debilitating as well. I would wrap my brain around the fact that I was dying and then the next week try to get back to living. I now think to myself, "this cancer is killing me, but NOT today." I wish for each and every one of you a day without pain and something that makes you smile. You all give me joy with your resilience and break my heart because of the pain you are dealing with. Hang in there. We need each other. LOVE and HUGS Cathy
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Dear All, just thinking about you all. Hope you are having a good day. I'm having abdominal pains today but no vomiting. The sky is blue and the sun is out. Beautiful day. Love and hugs, Cathy
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Stephanie, Although I understand where you are coming from we are not nearly ready for you to die! I cannot imagine coming to these boards and not being able to benefit from your wonderful wisdom and insights. You as well Rosevalley. I have been following your story with all of it's trials and tribulations and would feel as if I am losing some very dear friends. I pray for you two and Hummingbird (and for all of us of course), that miracles occur in this life and we all find peace and comfort and as Stephanie emphasizes, enlightenment!
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Retrocath- whew you have been through it! I hope they are giving you some reglan to move things along. I swear by it. May the abdominal pain you have be gone. I drained off a liter today and that left my abdomen feeling empty and achy. I ended up sleeping much of the afternoon. The fatigue and weirdness of it all. No vomiting so I take solace in that. I am always cold. It's sunny and 75... beautiful.
artistatheart- I am not ready to say good bye to Stephanie either, but I know when it's time she will fly free and we must let her go! Blessings on the trip - freedom and release from cancerland. At these endstages where life is lived in tiny bits and the trials are huge - release is sweet. I am looking forward to being cancer free. She has been an ascites drain patient for a year and on hospice for 9 months I think. I am sure Stephanie is looking forward to being set free.
Hummingbird how are you? How's your Mom too? Did you start your trial.
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Hi Ladies,
Erica, Sally, Cathy, Stephanie, Rosevalley and anyone else reading - As I have been coming here to this thread and frequently reading everyone's posts, I see just how challenged we all are with these mets. It is a struggle! I have wanted to reply sooner, but this clinical trial I am involved with takes up many hours of my time. I do read your posts as I sit in my cancer center all day, usually two days each week, but it's difficult to post there. I just want you all to know that I think of you ALL the time. Erica - I would love to see pics of your cancer-be-gone party. Thank you for remembering us. You have been through such hell. Sally - I don't even know what to say anymore except I second Rosevalley's comment that this whole thing sucks!
I continue to remain hopeful that I will have more time, and so I try to enjoy every minute. Yes, Cathy, it was a Beautiful Day!! On Thursday, after receiving the pathology report from my recent liver biopsy and discussing the results with one of the oncologists, I am understanding more now how this new trial drug is targeting two major mutations that I have and it might, just might, keep me stable for a little while. Rosevalley, like you my tumor marker is now also at an all time high of 1,251. Of course, I am so praying that this drug does something!
I am very grateful for you all. I know I would not be in this good frame of mind without the sharing and support on this thread. Thank you. Wishing you all the best!
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Awake between 2 hour naps. Love to sleep, but need to eat, drink, pee and respond to a couple more urgent Sunday tasks before heading back to bed, so must be short.
I may even change my pajamas as I'm trying to turn over a new leaf - wear no top for more than 24 hours, no bottoms for over 48.
I care so much for everyone here and am grateful that we are all caring for one another.
My heart both expands and relaxes to be one piece of us!
Thank you.
And enjoy the bumpy ride that peritoneal mets takes us on. Life is still a beautiful adventure, even spent sleeping most of the time. Even spent in treatment or suffering the frequent indignities of our shared disease. A beautiful and fleeting adventure.
Great love & great light, Stephanie
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Dear All: I am nibbling on some bread crust after having had abdominal pain and vomiting for the last 24 hrs. I forgot to tell you that NOTHING showed up on my PET scan which is par for the course with me. My mets didn't show up on a PET scan before either even though I had "strands" of cancer cells throughout the ascites in my abdomen. I see my Doc Wednesday -- I know we have reached the point where he will treat me even without proof from the scans. I guess I just want to keep it challenging for him. I hope he has an idea that will nip this in the bud before it takes off and flourishes. I love you ladies already. We have to keep going for each other. Better day tomorrow! Cathy
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Cathy- I hope you feel better and they can get something to knock it back a bit. I don't even ask for scans anymore. My markers give me enough information to make treatment changes. My doctor is good with that. I am perplexed and relieved that I feel better then the markers would indicate. Lobular cancer is a beastly sneaky cancer. You don't say on your sign on if you have lobular cancer mets. It would be interesting to know for others checking in on this forum how many of us fit into that category.
I was super unsteady and dizzy this morning. Don't know what that was all about but it resolved after shower and moving around. I have sore right ribs and am so tired. Tomorrow we try the new chemo that starts with a V... wish me luck.
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Rosevally. Good luck with your new chemo tomorrow. Hope it is easy on you. Yes, I do have lobular breast cancer. I recently read that scientists think there is a similar component in lobular cancer and a rare gastric cancer. If I can figure out a way to share the article with you all, I will. Seems like lobular slipped through the cracks when it came to research but maybe things are getting better. Going back to bed. Good night! Cathy
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