Shadow in chest is recurrence
Comments
-
Good morning everyone,
It's been a crazy week. Last Thursday, I had the inklings of a migraine headache but was out of meds, so thought I could deal with it with just ibuprofen. Call that Error number 1.
On Friday, the migraine was worse, but I had to go to my first Taxotere infusion and so went ahead anyway. Error 2. I got sick on the way to the clinic but went ahead with the infusion. Then, all hell broke loose. I had the worst migraine of my life that continued all week, and that is just ending today. Two trips to the ER and an MRI later, along with a morphine infusion, and no work and sleeping 18 hours a day in a crazy-pain daze, and here I am. Back to life, thank God. long with being in bed every day and no work. I've been sleeping about 18 hours a day, in a crazy-pain daze, and today am just coming back to life.
My daughter, bless her, took the reins and took care of her own lunches, breakfasts, cleaned up, and checked in on me. She's a sweet kid. And my husband is a dear, who just by being goofy and concerned makes me feel better.
I'm about to eat a breakfast of eggs and fruit for the first time in a week, but just wanted to keep you posted. Hope you are all having a better week. Love out.
Jojo
0 -
Hi Jojobird,
Goodness what a terrible time you have had! Was it stress related then? Treatment is bad enough without a migraine. How on earth did you get through this.
I too am coming out of a difficult couple of weeks. Today, at work I began to have a sense of improved hearing. At home tonight I can here the tv and follow family chat. No where near back to normal but so much better! I will never take my hearing for granted again. I see the specialist again in 3 weeks time.
Happy weekend everyone. Jojobird- you enjoy that delicious breakfast!!
L
0 -
Liz,
So glad your hearing is coming back! That is a big one and for sure not to take for granted. And am glad things are on the mend for you.
I think the migraine was stress combined with chemo and drug interactions.
Also, we just told our daughter about the recurrence yesterday. I wrote more in detail on my blog, but she handled it surprisingly well. We are also prepared for more if/when it comes.
Love out to all on this Sunday.
Jojo
0 -
Jojo,
It is the toughest thing talking to children whom you have a deep need to protect and nurture about illness. I read your blog - you have a very clever daughter - effing cancer indeed.
Liz,
I will pm you. Would have love to help with the BBQ. You look great. We had a long week/end and a list of "fun to do things" so I found myself digging for Thundereggs at a local mine - not an easy task in the heat mind you.
Hugs to all,
😊🌷🐣
0 -
Hi All,
Sorry to have been so silent lately. I seem to be running lately and am finding it difficult to keep up with my favourite threads. Just two weeks until I depart for your shores Liz. I FINALLY have all my excursions booked. Spending a ridiculous amount on this trip but what the heck. (I’ve decided that Claire is my hero. There are many ways that I keep up a brave face but have to admit I have found it challenging to plan when there are so many what if’s rattling around in my head and my body not completely cooperating.)
Liz, I am pleased to hear that you are cutting back to part time in the fall. I am also watching how things go and if I need to switch treatments again will also be pulling back. In reality I would like to have done it regardless but it’s complicated now. I am doing so well compared to last year that I am sure that everyone would wonder why now. But really, my head is no longer in the game and I find the added “to do” medical list is making it increasingly difficult to keep up. But we’ll see. I can revisit after three weeks of purely “me” time.
I did want to steer you to a post from a few days ago called “So I’m a miracle. I’ll take that”. (Just read the original post. The thread unfortunately degenerated to a toxic back and forth after that - amazing.) This is what I see for you. NED for a long, long time!
Off to Vancouver for a meeting tomorrow with a very early start. Ugh!
Hugs to all. Pat.
0 -
Hi Pat,
I have spotted that thread - I came across Jen's story when first diagnosed and I was touched and inspired by her honesty and her journey. Really sad to see it misread. 😊🌷🐣 Liz - worth a look - Jen rocks.
Jojo,
As you head into chemo, here are a couple of thoughts - I know you did this before, take what fits if anything. 😊🌷
Exercise - even walking up the drive way helps. Lots of work on what it improves - but aerobic ability is the one that tickled my interest. The reason for it being that there is now reasonable evidence that chemo relies on off target mech (ie aside from killing cells by interfering with DNA) such as stimulating the innate and adaptive immune system by a number of pathways. If that is correct it will help your immune system respond if your aerobic capacity holds high throughout.
Diet - wow - well Z has taken to a 3 day water fast before and 24 hours after - I am not CERTAIN but I do know that there is a trial of caloric restriction around chemo days and that Mayo participates.
We know:
Autophagy - Nobel Proze for Med 2016.
Goustave Roussy - ( I have posted this before - so has Z )
The whole conference online is very interesting and Laurence Zitvogel and Gustavo Kroemer are there - this is solid mainstream oncology/immunology. I am not suggesting you do that - I have no evidence for it - but I, and I stress " I " would consider a low caloric no sugar very low protein diet around my chemo days. It of course depends on what your overall diet is like for the week/weeks. It's all a bit nebulous but it's not silly and quite interesting.Do not eat sugar on that day!!! I speak of it particularly as in TN your immune system is your friend. To be honest I did not feel like eating much so it wasn't particular hard. Please do not have a hot drink during chemo - on Taxol - suck on ice to protect your oral mucosa.
Sleep - regular - any way you can !! Even if you up the sleeping tablets. Circadian rhythms seem to be another part of the puzzle.
Another Nobel prize for Med 2017.
Finally stress - don't laugh...- do what ever you have to, to function. This is the first paper that I have seen effectively medicating for stress - it's small and it's on the use of propanolol in preventing melanoma recurrence.
https://jamanetwork.com/journals/jamaoncology/arti...
But it's JAMA so reputable and propanolol is a Beta blocker - it modulates the neurohorm response to stress. Ha!!
Well that is my two cents worth - I am quite sure you knew most of it. 😊🌷🐣😉
Hugs to All,
( really happy I could not post on Stage 4 - I so pissed off by the silly comments on Jen's thread! )
0 -
🤭 I could post but, quite frankly, didn’t see much point. With some it is simply better not to engage....
Happy Monday. Pat
0 -
Jojobird,
I read your blog and think you have a wonderful way with words and that you dealt with telling your daughter in a perfect way. She sounds de to be an amazing girl and needs that strength, needs that optimism that you are beginning to find.
My daughter took a similar approach and is quite nonchalant about my cancer and actually I am happy with that. These youngsters of ours have so much going on in their lives and I for one will be damned if I am going to let this disease deprive them of that normality. You are here fighting this and we stand with you. You are having treatment and that is important on a physical and psychological level for you and your loved ones. I can already see a change in that you seem a little more positive now from those early head spin days.
Pat, yikes two weeks till your trip to the UK. This weekend is fabulous weather. I pray you will have a repeat. Hang the cost and immerse yourself in complete holiday mode. You and I share similar tussles over work and perhaps your forthcoming down time will give you further perspective. I know we won’t be able to meet but how about organising a time for a phone call while you are over?
Ioana, great info on chemo. I remember how you helped me get through. Having positive things to look up and/ or implement really does help.
Claire, we meet in 24 days time!! How I laughed at being called luv- you obviously have some Yorkshire roots!
Di, I will PM you.
Happy weekend to one and all.
Oh and I did post on Jenn’s thread. Just felt sad at the way that went and I have doubts about whether Jenn will want to return to the board now. Ugh....
0 -
Jojo,
Just reread my post - I am sorry - I do go on...to be honest it's frustration with this wretched disease - I will not delete it - that wouldn't be silly - please ignore my ramblings and just know we are all here for you in our own ways - I am sorry you had a tough first week.😊🌷🐣
Pat,
You are much wiser than I - and potentially more experienced handling people - I am cocooned by work - was temptedto post this and I reckon the mods would have let it slide since a few others breached the stage 4 rule on that thread.
😱🍾🥂
0 -
Liz,
Just spotted your message - to be honest - when I read it I wondered what were the Mods doing??
Jen has been a tremendous ambassador for Stage 4 - I love her story and her spirit!! Grrrr...Tiger claws.
Hugs to all,
Ioana
0 -
I agree about Jenn. She took the time to respond with her success when many would have been running for the cancer free hills!
Jojobird, I really hope the side effects begin to ease. Uhh I hate this disease.
0 -
Using that cat picture from now on- very funny!
0 -
ok, mercifully the medicos down under are off the paddock
ABC News: 'World-first' call for exercise to be prescribed to all Australian cancer patients
http://www.abc.net.au/news/2018-05-07/cancer-patie...
If it goes through andit will be claimable and very positive - well let's see.
0 -
Hi Liz - my mother's English family are Reynolds from Gloustershire. lol on my lingo, plus I did work in Soho years ago. So excited about our flight - waiting to get my excursions lined up. Sorry to miss Pat by a day. But UK here we come!
(()) C
0 -
Sorry we will not meet as a group. It would have been grand but perhaps we can find something central for everyone. The countdown has begun here. I must admit, I'm feeling a bit panicky trying to make sure everything is under control before I leave. Lots of loose ends to tie up! But ultimately, once I am on the plane with drink in hand I can relax.
Cheers. Pat
0 -
Good morning,
Are some of you meeting in the UK? That is wonderful and exciting if so, and I'd love to see a picture or two if that happens.
Wildplaces, no apologies necessary. I had heard about fasting and tried it over about 6-7 cycles of my first round of chemo treatments. I'm willing to try it again but as you can imagine I'm less than convinced of its full efficacy. And I am continuing to run, go to the gym, and taking time to meditate each day, even as I grow exhausted and my hair begins to fall out. I do what I can.
But I am no longer able to consistently or reliably work due to a) the uncertain prognosis, b) ongoing monitoring of side effects from chemo, and c) frequent appointments, to include physical therapy (monitoring arm lymphedema), infusions, blood draws, etc etc. So, a job that I loved is one that I cannot return to next year. I'm setting up an appointment to talk to my oncologist about her thoughts regarding the future, and now have to begin the process of applying for disability. I feel like the floors have been removed from beneath my feet. So much is unknown.
Pat, I am so glad you are traveling! This is one of the things I am thinking about: if I have a year to live, what would I do? Please post pics.
Hard not to go down the road of depression here, but my husband, daughter and cat keep me grounded. I garden a little, manage the paperwork, clean, catch up with friends, so it's not so bad. I'm functional. Xeloda is giving me mild headaches every day though so I'm taking ibuprofen. Thank you for the feedback in telling my daughter about cancer. We worked very hard this time to be mindful of what we're telling her, and how we're telling her. She's kind of like: shoulder shrug - whatever.
For now.
Some neighbor left a bouquet of flowers on my doorstep this morning. Can I tell you what a blessing it is to have kind neighbors? People who do things like this "just because." I hope I find out who it is.
I wish you random flowers, good neighbors, a good day. Thank you all for being here. Love out.
Jojo
0 -
Jojo, a quick message before I head out to get my Faslodex injections. I attended a two hour session on nutrition for those on chemotherapy specifically with breast cancer put on by our cancer agency and facilitated by a nutritionist. After explaining the best case scenarios for nutrition she talks about the reality. Because so many foods taste so terrible and it is important to continue eating she suggested that foods not necessarily as healthy as some are better than none. I understand that sugars are bad for all of us but during chemo sugars and fats taste good. Ice cream and milk were tolerable for me whereas most healthy foods tasted like cardboard. I still do not like eggs. She said that some things we do eat during chemo that are not the best for us can be discontinued over time after chemo. So I happily ate ice cream and cereal with milk and was able to tolerate them. I do agree with the exercise part even if it is a half a block. I am not sure how old you are~~ I was 63 at the time of my first chemo and was not working anyway. I do not think looking back that I would have been much but it any work. From your last comments it sounds as though you are doing what is needed plus more and are supported by your family. These are important things and it is important to appreciate the small but important things that you do accomplish while not worrying about things you do not accomplish. Treat yourself when you can. A big virtual hug f me this morning.
0 -
Hello my friends!
I too have been silent of late. I had a group of five visit me for two nights at the end of April. They were hiking and yoga friend from Vancouver and so I enjoyed their visit and they did everything pretty much it was exhausting. Two days later three high school friends from decades ago arrived along with a girlfriend of one of the friends. That visit was different~~ it was like good family. Was a loving and emotional couple of days and we did fun things I got a couple of important things done. One friend and his girlfriend stayed on stayed on for three more days and did some massive gardening. I rested more than I have been doing in part because from Friday and continuing on now I have had much more severe nerve pain that is like electric shocks going from my arm through my fingers especially my pinky finger and the one next to it. I have been lying around since taking Oxyneo a couple of hours ago. I put a call in to the pain clinic at the cancer agency but have not heard back. Yesterday it was bad too but I added oxycodone in the early evening after my oxyneo, knowing that I would go to bed soon after. Not wanting to repeat that, I await a return call. I am slightly fearful. Also for the first time my neutrophils have stayed down and in fact went lower after my week off Ibrance. Actually two days before I was to start cycle 10 I have my blood work done as usual. My new and wonderful oncologist called me Friday with the.98 neutrophil count and asked me to repeat Monday which I did. She called again and the count was then .88 and my hemoglobin went from 108 to 106. I am now on a full week off Ibrance and will have blood work done again Friday. I also have an appointment to see my pain doctor at the cancer agency Friday morning. I have been trying to wait until then but the pain is pretty intense. I would love to respond to each and everyone of you as there's been so much going on but it can't be now as I am having a hard time concentrating. Love to you all,
Marian
0 -
Marian, so sorry to hear you are struggling with pain. It’s so hard to rest or function with constant pain but I’m hopeful the pain clinic can get you back on track. As to the neutrophils, odd that they have decided to crash now. Did you MO have any theories?
I am doing well but think I might be soft in the head. If it wasn’t enough preparing for my trip, the Reno’s continue. Floor guy came today and, of course, managed to muck up the freshly painted walls. Sigh. They should be done by Friday and then I need to get painting done and move bedrooms/furniture in the week before I go. I swear that I am going to get on the plane and slip into a coma. Hope the wine is free flowing on that flight.
Made it through Wednesday. Hugs to all. Pat.
0 -
Pat and Claire have a wonderful trip. Sounds exciting!
Liz so glad to hear that your hearing is coming back.
Marian your pain sounds like my phantom pain. I do pray they get it under control.
Jojo ditto what all the others have said.
Loana this is a picture of sunset at our beach. Here is another picture of a haunted castle not far from where I live. Franklin Castle
0 -
DIV, you did not mention your latest information re your treatment? As for phantom pain, are there bolts of electrifying pain that make you yell out loud? I have to admit that I am fearful that my tumour s on the move despite chest CT mid March being stable. Time will tell but meantime, more opioids!
Pat, you certainly have a lot going on pre departure and for your sake, can't wait until you are in your seat enjoying a glass of wine.
0 -
Claire - my mother in law is Reynolds too not sure from which part of England....
I am enjoying a vacay in Nice. Hope you all are having a wonderful week
Lolis
0 -
Marian, yes phantom pain feels like bolts of electricity, like sticking your finger in a socket and getting the crap shocked out of you . I actually do yell out. It hurts like hell. The shocks have eased considerably over the past year. The shocks usually come at the end of the day and at night. My Dr. has me on 2700 mg gabapentin and baclofen (muscle relaxer) 3 times a day. Dr tried to wean me off to see if I still have the shocks and when I got down to 600 mg a day the shocks got more severe so she put me back on the 2700 mg a day again. I start radiation Monday 14th. I will have 5 high dose radiation treatments Monday-Friday. I got my creams ready and have been prepping my skin to cut down on the burns. Maybe gabepentine will help you too. Could be the tumor is pressing on a nerve. Your in my thoughts and prayers! I pray they find some relief from the pain for you.
0 -
Di - that is a great beach - beautiful sunset !! Quirky castle.
Lola - enjoy your time in Nice - it's grand and glorious as is all that coastline - yummy food, and. Matisse museum...
Hugs to all
😊🌷
0 -
OMG, I am shattered today. The floor guy arrived to tell me that we had a problem if we were not doing all the rooms upstairs at once given the waythe floor runs. I still don't understand it completely but I take it that he can't stop partway. As a result, he would have to cut the fir floors and put in headers - not what I want. So... a quick call to my understanding boss to get the day off and then the fun began. I had to move everything downstairs, thankfully with help from a couple of guys the contractor sent. My Fitbit is off the charts logging more than 30,000 steps today. I feel like I have been beaten.
Now in bed, in the sitting room and mom gets to bunk down in the dining room. Renos are such fun! Oh, and Sadie is completely stressed out. She came home from care and promptly had an accident which she never has. Not liking the changes!
Night all.
0 -
Good morning,
Pat, the renovation sound crazy! It surprises me that the floor guy told you this on the day the work started rather than before, when he came to do estimates/review the project. I sure hope the crazy eases up soon, and that your floor is sparkling and wonderful when this is finished.
Lolils, that Nice picture is amazing. I hope the vacation is restful.
DIV, thank you for the castle photo. Are there many of these where you live? What is the history of the architecture? It is gorgeous.
Marian, thank you so much for the input on nutrition. I am trying to balance health with what I can eat. The Xeloda/Taxotere combo really knocks out my appetite and I can only stand bread, rice, starchy foods though I try to force fruits and veggies when I can. Also, protein. But this week is my week off of Xeloda and my appetite has soared.
My husband and daughter took me out for dinner last night, and I ate a most delicious Caesar salad. I also drank a raspberry Italian soda, and both were exquisite. Since I've cut back on sugar, when I do eat or drink sugary things, the sweetness is just that much more sweet.
I am not working and this change is sudden. I'll be on disability for the foreseeable future, and while this is good in one way (time to rest and heal), it has also created a sense of restlessness. I am in transition and thinking about how to fill my days with meaningful tasks. I'm going to start a writing project, I think, and volunteer in short increments when I can. See friends, some of whom are stay at home moms. Read, Exercise.
It's hard to plan when I'm not sure what the side effects from chemo will be. Also, I try not to get sucked into the undercurrents of my fear of dying. And grief. Learning to accept the whole range of experience is important, I think, and then turn to face the day, count my blessings, and go on.
I wish you all a restful Sunday. Love out.
Jojo
0 -
Pat, are you leaving tomorrow? Not sure why, but in my mind that is what I recall. Have a wonderful time and I look forward to hearing all about it.
Hugs,
Marian
0 -
Not yet but soon. I leave on Monday, Victoria Day. Hoping it won’t be nutty in the airport and that all the hub bub from the royal wedding will have died down by the time I get there. Not sure how easy it will be to keep in touch while I am gone with the outrageous cost of internet on the ship but hope to send pics when I can.
Liz/Ioana, I need to PM you, hopefully tomorrow. Work is exceptionally busy right now. Add this to my renovation crises and my days are full!
Hugs to all. Pat.
0 -
All Good Pat - nothing that can not wait until you get back - travel well and have a blast as I know you will!!
Hugs to all,
😊🌷
0 -
Pat - enjoy your trip. Remember internet charges do not apply when you are docked - that may save some $. I'm excited about flying to London and seeing Liz on the 30th. Sorry we will miss you, but one bco sister-visit down and more to come. I hope the weather holds up, I don't want my wig to get ruined in the rain. My hair is coming back slowly, but not fast enough. I will send pics for sure. Ioana, JoJo and Di - will be toasting my trip in BA first class with some champagne! Hugs to all!
I'm eating everything that is soft and not spicy to try and gain back some weight. Back on Xeloda this week.
(()) Claire
0
