My Husband, My Life, My Love, My Family, My Cancer
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Ugh ANOTHER hospital admission for me. I am home now but omg! My bloodwork came back late yesterday with low potassium (2.8)so I was told to go to ER right away. I had a tiny fever too which I didn't realize I had. So into the hospital I went. They never found the infection source so Think maybe just fighting a virus? But I had to be admitted for three bags of potassium overnight and several bags of fluids. They were going to keep me for four days but I voiced my objection with a few tears that tomorrow is my granddaughters' 10th birthdays and I have a LOT of work to do and would MUCH rather be home than in the hospital. So they let me come home today with the ginormous potassium horse pills. Anyone ever have to take those? Wow they are big. I have to cut them in half to swallow them. I am so tired! Who can sleep in the hospital? I can sometimes ut last night was just a nightmare. I was taken to the wrong room, my roomate was a man but they wheeled me in there anyway. Realized the mistake and found the right room except that it was still the wrong room. Finally got to oncology but did not get much sleep . I can't wait to go to bed in a f ew minutes. I have a huge impressive hematoma where the IV was placed. Ugh. My body hurts from hospital bed-itis - most especially my back. Advil coming right up! Hip and Pelvic MRI came up in my chart. Acetabular is looking pretty close to fracture. I was told to reach out to the ortho oncologist asap. It's alwasy something. I feel pretty discouraged but I'm also very very tired tonight. I cannot wait to see Afinitor in my rear-view mirror.
I'm worrying about every step I take too DG. I wish I had some pain meds other than Advil. It works okay but I think there are better options.
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Moomala—. OMG. I am so sorry you landed at the hospital... and taken to the wrong room TWICE. You will surely sleep better in your own bed.
Sorry to read that you are close to a fracture in the acetabulum. Let me know what they do for that. I have read posts on here about an orthopedic surgeon applying a special bone cement to make the area stronger. Don’t know if that was a one-off treatment or more typical treatment?
I hope being at home and having pills instead of IV potassium gets your numbers where they need to be.
Sending you a virtual hug and keeping you in my thoughts.
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Oh Moomala, I am glad to hear you got to go home. Hospitals are not restful places for sure and the additional worry about fracture with every step is certainly not going to help. I hope the advil kicks in soon and some sleep improves things, even a little for tomorrow. Hugs. I also cannot take huge pills so I am glad you have the option to cut yours smaller.
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Moomala~Honey don't you have a palliative care doctor that provides you with the needed maintenance medicines for your condition? My doctor issues me 5 mg Percocet for low pain times, and 10 mgs for bad pain days. I also am allotted two 10 mg Valium daily for relaxation for stress and decompression. I don't know what I would do without these things. You should not be worried about Advil verses Being able to rest at night. You've been through too much lately to be dealing with this bullshit!! We need to be taken care of. No games I know that some don't like to take them, I get that but. Some days we need to have our back up artillery! I'm never without help. Including MMJ. That helps tremendously as well. I'm thinking of you sweet woman. Bug hugs
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Quick response as I need to shower - day 2 of my writers conference thingy and I am pleased to say I am holding up really well. The hilarious thing is tht the small hotel it is being held at this year has OMG the MOST stairs I have EVER seen. Just getting to the bathroom requires either two flights up or down. *sigh*. But I am holding my own and this is good, getting more movement though DAMN does my ass hurt by the end of the day. This is the first time in three months I have been out of my 'corridor' of home-hospital and it feels great!
Dodgersgirl - They warned me with the goserelin (hormone suppressant as I am pre-menopausal) about tumor flare which is why I got the whole spine scan first, along with an xray of my left hip to check if the met there had invaded the corona, which it hadn't. That was clean so they went ahead.
However, because my initial diagnostics happened at a different hospital in a different 'network' they didn't have the actual original film so what was missed was my one giant met in my sacrum/sacroilliac joint. I couldn't bear weight when it fractured and after a week of that I got hauled in for another spine scan and THEN they thought to ask for the rest of the film. Ive never complained about pain in my back, I'd been complaining about a rock in my SI joint and an inability to move my leg - CMON people get with it! I also noticed that my breast lump seemed to get a bit larger, though that has now deflated considerably. When we started I/L I was warned again about potential tumor flare but what was gonna be a problem happened already. I was ok with that.
No surgery or kyphoplasty - Im on the NHS for this and they went conservative with the rads and bone strengtheners and a ton of Vit D. And time.I don't know if that was due to being de novo and really needing to get the I/L started or due to long surgery wait times (but, I have insurance! please, someone take it!). Its working well but the gait change from limping now inflammed the 'good' sacroilliac joint and now THAT is being a pain. This week I need to find a PT to level everything out.
Also, this whole two hospital 'networks' and the fact that I had scans at FOUR different hospitals - Im getting a second read of everything through a second opinion service through my insurance, with Brigham and Women's in Boston. Just.. curious. The approach and standard of care is correct but I want someone outside the NHS to have a look.
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Tanya, that does look yummy.
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Mara - potassium pills are so big that even cut in half they are still huge. If you ever have to take them I would think about quartering them honestly. They're giant.
Mel - you just really inspired me to call my palliative care provider back. I had a wonderful meeting with her but I did't want to go on any pain meds. I'm fighting that but since September pain has become part of my life and I have to accept that AND the idea that the pain meds make me feel I can function. I got my MMJ card last night and will make the dispensary appointment as well as a call into the palliative care practitioner this week. I think most places are closed tomorrow but I will call Tuesday. It's most definitely time. Right now I'm just exhausted from the stress of being in the hospital. I do NOT like to be away from home and my husband and my dog.
I keep thinking I can have MBC and do it all. And I know some people can still do that but I'm not one of those people. I am having difficulty and challenges. Right now I'm in the process of giving up part of my life. If I didn't need to work at least part-time, and love my work and my volunteer work and wasn't such a Type A personality I think I'd be having an easier time but I have been refusing to give in to my illness. I had to cancel Saturday piano lessons yesterday becuse I was in the hospital but I literally felt GUILT all day for the idea that I might b making people angry.
I have a giant event for piano students here that I started many years ago. I'm so in charge of it and it's so big that nobody will take it over from me. Nobody wants to. I've been able to be involved this year but it took four people to do what I've been doing all these years. I still have a TON of responsibility over the next week but I need to give it up. If the event never happens again , that is not in any way my fault. But still I feel badly. The other day one of the piano teachers phoned me and said 'I don't like working with the other organizers - you are always so nice and welcoming and flexible". I translated that directly into guilt - that I was letting someone down. The compliment was nice bt I also felt angry with her for putting that kind of pressure on me to step back in and assist HER with what she needed. People are really something.
So many of my friends in support group both online and in person are on treatment long term, feeling well and life is going on. I thought that was going to be me but it hasn't. I'm in some really serious acceptance mode here.
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moomala, it sounds like a voice of perfectionism is running in your brain... Recognize that, generally, this voice is NEVER satisfied! So you get to tell it to shut up, when it pipes up at the wrong times. It's wrong to beat up on yourself. You need to take your own side and answer it back! here are some ideas:
" Shut up! I've done a great job building a beautiful event and I can feel proud of that." "You're wrong! I'm Impressive! When I was in charge, I did the work of four people!" "Zip it! I am proud to have always shown deep dedication and caring towards my students."
It is ironic that a very sweet compliment made you feel guilty instead of PROUD. I know it is very hard to shift gears and do less; but on the other hand, do not let this fact steal your accomplishments, nor the respect and affection others feel for you. People who retire due to illness, age, having a baby, or other reasons have nothing to feel guilty about, and neither do you.
The way out of this thinking is to think about when you took "never good enough" on board as an inner slogan, and to actively push back on it. Most people who think this way use it to spur themselves forward or motivate themselves, but it becomes a very mean voice way too easily.
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Moomala,
Don't beat yourself up so much. It sounds like you are very invested in your teaching, and I can understand. When I was diagnosed for the second time with MBC this past May (May 2019), it took me a couple of months to realize that I needed to put myself first. I had to cut back on my schedule for teaching (I teach at a university) to "protect" my health. It actually took a talk with my internist about stress and expectations that I put on myself for me to see that me protecting myself by cutting back on my teaching schedule was something that I needed to do for me. I also decided that I needed to retire at the end of this academic year. (I am 67, so "of" retirement age, but still -- many academics teach well beyond my age.)
This is not "giving in to your illness." Think of it rather as putting yourself first -- and not in a selfish way, but in a protective way. Once I made that decision to cut back on my schedule and to walk away at the end of this academic year, the past months have been much easier for me. I still do my job full tilt because I, like you, care deeply about my students. But I now walk away from other things that I could be doing with respect to work -- going to conferences, writing articles, doing extra research that would maybe supplement what I'm teaching but that is not really necessary -- and I think for me, at least, it's the best solution. Yes, it's a difficult thing to do. But I need -- as we all do -- to worry about me.
I hope that you can come to peace with pushing aside things that you can, and that you can perhaps keep some things going in your career that not only bring you joy but that you can manage without overwhelming yourself.
Bev
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Moomala, so sorry to read about the stress you experienced in the hospital, and the professional adjustments you will have to make. Hopefully, you will soon experience long-lasting results from your next tx. All it takes is just one medication that’s right for you and that can slow things down for many years to come.
I can relate to the frustrations when people make demands on us, on what is an already stressed out and weakened system. My friends don’t seem to adjust to the fact that I will never entertain them like I used to...and can’t look after their needs when I can barely take care of my own...I’ve tried to make them understand, but now I just protect myself. Just a simple NO with no explanations....
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Moomala, I am so sorry that you are feeling this way. Being in the hospital of course will impact plans. Look after you first and foremost. As treatment and pain management make their way in, the other things that make you happy, the lessons etc will become easier.
It is hard to let go of guilt because you don't perform as well (in your own mind) but it could and should be done. Meditation may help, family are supportive I am sure. Take advantage of anything that will let you release that guilt and just do what you can to be stronger for yourself. The other stuff will come together.
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Mara,
I agree with your post.
And -- since you mentioned meditation -- I found some neat stuff on the MSK website that's available to all. It's called "Meditation Station." The website is:
https://www.mskcc.org/cancer-care/diagnosis-treatm...
I did one of their longer meditations last night, and it really helped me sleep. They have some neat things there, including a yoga Nidra session that is very relaxing. Hope this is helpful to someone.
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Moomala- Wow. So sorry you were in the hospital. Why was your potassium so low? Do you have problems with your potassium level? I have an autoimmune issue that causes my potassium to be low sometimes. I understand about those potassium pills. I have had to take them also. They are big !! And you cannot crush or chew them as they are extended release. And the second they hit the tongue they start to melt, which makes swallowing them even harder. I empathize with you about being a Type A personality--I am too. I don't know what advise to give you as I struggle too--sorry. Get some rest, girl and take care of yourself.
I wish we had Palliative Care in our area--we don't, I have asked. I live with so much pain and get frustrated with it. But all the docs say is use Tylenol and heating pads or Ultram sparingly --which causes my constipation to be worse. Vicious circle-pain or constipation.
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Re meditation: there is a meditation teacher called Tara Brach (she has written several books) and on her website are dozens of guided meditations of various lengths from 5 mins to 30 mins or more. It can be great to listen to a meditation on headphones and just drift off. Headspace is another source of guided meditations.
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There are also a ton of meditations on youtube for pretty much anything that can be listened to. I search whatever may be bothering me and listen to either music, binaural beats, spoken word. Some are easy to sleep to as well if napping.
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Moomala,
Thinking of you and sending you big hugs across the miles. No advice from me. I am a Type A too. We’ve already established how alike we are, so just know I’m here cheering you on as you get your “bad-ass” on and start saying NO a whole lot more often. I am starting Abraxane this week, and I can’t wait. My pain levels are increasing, and I finally had to ask for something stronger too. Mel is right. Sometimes we just need to ask for what we need and enjoy the relief! Hope you have a better week this week.
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oh my gosh you are truly a lot of wonderful people. I am really touched by your care.
Candy I had no symptoms of the low potassium. Just a flushed face and fatigue But I have fatigue from Afinitor too. They think that my blood pressure meds, which is just 12.5 of HCTZ, a diuretic was contributing. Also, I have had non-stop IBS for the last 8 weeks on Afinitor. I am not calling it diarrhea. The doctor in the hospital asked me for explanation and when he heard my description of my daily habit of pooping 6-8 times with IBS, (hey buddy - let's talk about YOUR bms for awhile ok???) he said this pooping can be caused by low potassium!!! But it can also be caused by Afinitor. Since I was trying for six seeks to manage diarrhea I was not eating that well. I ate and drank potassium rich foods like coconut water and V8 and bananas and potatoes, but this didn't work on the the diarrhea OR my potassium. Then on Thursday I took 150 mg of prednisone, a potassium sucker, to avoid contrast dye allergy for my CT. And they made me drink barium which I've never had and....caused diarrhea all afternoon. By the next morning I was feeling depleted but I had appetite so I consumed a spinach omelette with a banana and V8 juice. Went and had my blood work and my potassium was 2.8. It's been running 3.2 on Afinitor but never that low yikes. So into the ER I went. They got me up to 3.6 yesterday and I came home with the horse pills twice a day. I cut them in half. They did this in the hospital so I think it's ok. They said there's a .liquid version but it's really distasteful. How long do you normally take the horse pills Candy? I have a five month prescription. Uhhhhhhh.....that's a long time for horse pills.
Have I mentioned lately how much I miss Ibrance?
I adore all your meditation suggestions. I have had some depression/anxiety and have not been able to concentrate much on books or podcasts of meditation. I will make a better effort because I know this helps immensely I am a headspace user but youtube has a TON of stuff that's free.
Candy I wish you had palliative care too. I just got my MMJ card yesterday so DH and I are going to dispensary tomorrow afternoon. I am not good at being high. Good lord I thought I was going to jump out of my skin when they injected me with 50 mgs Benadryl a few weeks ago at the hospital. I hated that feeling. But if it's helpful with this anxiety and does anything for this pain I'm all for it as a first option. I have another appointment with palliative care in a few weeks to talk about next step up. Right now, Advil is helping me.
BooBoo I have a friend here who has been on our treatment trajectory. She is starting Abraxane this week as well. She was sooooo sick on Piqray. Sometimes a sledgehammer chemo that doesn't cause that kind of nausea but takes away your hair is a good trade-off. At least for me anyway. I know hair is an issue for some but although I have really cute hair I could not care less about being bald. I'm still thinking of skipping over Piqray and going to chemo but i will talk with MO about it later this week.
Today is my granddaughters' 10th birthdays. Their restaurant choice is Red Robin. Ohhhh kids. But it's their birthday and hopefully it'll be quick so i can get back home because I'm going back to work in the morning.
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Moomala- Yep the diarrhea, multiple BM's a day with IBS, will do it. Plus the diuretic with the BP meds and the pred. All the above. I have Type I RTA from the Sjogrens autoimmune disorder that causes my low potassium. You can Google it to read more if you want. I usually run 3.2 or so. I have dropped to lower before and the doc prescribed those horse pills. I am supposed to take a daily potassium citrate pill--to help with the Type I RTA also-- but I don't take it faithfully because sometimes my potassium will be totally normal at 4.0. Yes cutting the horse pill in half is ok, just not crushing to ,say, mix with food, or chewing it up. The liquid version is awful-- makes me gag.
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Good and sensible general advice for Moomala ladies. I think many of us who are here are those who have worked hard in our chosen paths and like to be in control. We find reassurance amongst our peers, but realise we are all very different. Having also had a major guilt trip around letting people down and giving up work, when I actually am doing OK for the moment, one of my great colleagues said:
“ You do not need to justify yourself to anybody, it’s not their business if you look OK. It’s your business to look after yourself and good for you if you’re doing OK just now. So stop worrying about what other people think and do your stuff!”
Wise words!
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Moomala your love and talent for the piano has shown through in many of your posts. I loved working and definitely did the work of two people and had people tell me that when I was gone for awhile. I mourned the loss of my career. It took some time and thank god it subsided gradually as with many of the losses from this disease. Once I felt a little more energy I did part time volunteer myself in some capacity in my field. I hope you find your peaceful place in your craft.
I concur with those who have posted above some things (like serving big dinners etc) are things that I don’t have the ability to do anymore. Sometimes I am sad about it and sometimes happily do something else.Waving 👋🏾 hello to all
Tanya
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Tanya, your version of turkey a la king sounds great...mmmmm.... bacon
Moomala, sorry to hear about your hospital stay, I hope you’re feeling much better.
Lots of wine at dinner with the German friends and family, spent most of yesterday hungover but I did have a really good time. Going to the gym tomorrow then so many pre-op appointments on Tuesday, ugh.
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Moomala,
Love you girl. I just know that you and I are kindred spirits. I’d love to give you a call, but only on terms. Send me a PM and we’ll chat.
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Glad you had a good time Mae with your friends and family.
I did no laundry but did 3 separate walks of 30 minutes on the treadmill today. Felt pretty good about it too. No other housework done.
In my culinary adventures, admittedly tame, I have enjoyed duck liver pate spread on garlic bread with cheese shreds on top. Toasted through in the oven. Very yummy I must say. At first I found the pate strange tasting but in that combo, it was very good. Other than that, watched John Wick 3. I love those movies even though they are violent and fell asleep on the couch. Good day. My SIL brought over some Shepherd's pie for dinner and of course it was good too. My DB made it.
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Mae, those Germans enjoy their wine, lol, my parents were German, came to the US in the late 50s a few years before I was born. I might have missed it but when is your craniotomy? I’m in for pocket duty.
Moomala, There are some wise folks in the living room tonight. I hope you find a way/the need to step back from your big program commitment. You are the priority now, and your strength and your mental well-being. We all care a lot about you!
Hello Tanya and Everyone here 😊
DH and I had an overnight hotel stay last night after a get together with friends a few hours away. It was fun to see everyone, always makes us wish we lived closer to them. One thing I realized with all the conversation was that everyone is dealing with some kind of stress, and quite a few health issues came up. Not terminal disease issues, that was just me. I appreciate being asked how I’m doing but I usually minimize my answer and move on to something else. A few friends ask more questions then I go further. I guess I don’t want to be “that person” who goes on and in about their problems to someone who just wanted a short answer. I also think it scares some people to think it could be them someday. But overall it was a fun night.
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I missed my granddaughters birthday dinner because I was crying in the shower and feeling achy and just drained, and guess what? Nobody died. I sent DH with their gifts and the girls were just fine about it and sent me a picture of themselves with their gifts. I love my granddaughters to the moon and back but cha-ching. Doing what's best for me Day One.
Mae omg bacon. I absolutely love it. Hangovers not so much.
Candy that was good information about the potassium. I was wondering about the liquid version. The doctor yesterday said trust him - you don't want it.
You all have been very very helpful today. i thank you from my heart. I had a great cry in the shower with DH standing at the shower door- I was not making sense most of the time but I blubbered out some points abut ot feeling loveable anymore and feeling angry at the unfairness and how I just don't want to do this.
Here's my hematoma from IV the other night. I knew right away she'd done something wrong and it puffed up immediately but the IV was in and considering my dehydration I had to go with it. But the bruise is spectacularisn't it? Dr Google says it might be around for a few weeks. I see several doctors this week and I'll have them take a look at it. Not much I can do but Rest Ice Compress and Elevate. I'm only doing rest and elevation at this point. The nurses told me it'd be ugly and they were right. Thank you low platelets, dehydration and a nurse that was in too much of a hurry.
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Oh moomala, that is a nasty bruise, I’m so sorry.
Rosie, the Craniotomy is this coming Wednesday, thanks for pocket duty.
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Mae, will be on pocket duty. What does the craniotomy involve? Just spent a couple of weeks in hospital, 3 lesions on brain,,hopefully dealt with. Will bring snacks x
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Damn moomala - that is a real Canadian sunrise you got going on there. And I hear you about the shower blubbering. In a way it makes the clean up much easier and you don't have to buy more Kleenex.
Can you have your granddaughters come visit you instead to maybe make birthday cookies together or a limited time activity that works for you? I'm glad you stood up and said 'hey, can't today' to take care of yourself and your strength. Running yourself ragged isn't going to help anyone else and, least of all, the most important person - YOU! And with all the tech we have today? Its so much easier to facetime or chat or share pictures or memes with loved ones. And I bet they would love a private cookie session more than another person at their lunch Rant time and I cant be bothered to take it over to Steam Room -
I got totally plowed last year with a project that really required 2.5 people for the role I was doing. I tried to tell them I needed help, this wasn't good for me, even dropped the ol' 'but mah mental health!' phrase (which seems to get people moving in the UK these days) but no. So now when work is asking 'when is your treatment going to be done, when can you start taking on more responsibility and blah blah blah' they get the Heisman from me. Your crisis is not my responsibility, nor is your inability to plan or general circus of ineptitude. But its really hard when youve been brought up with both a) a really strong work ethic and b) a need to please people. Thats a dangerous combination and tough to change the mindset. To let things drop. But you know what, no one has died, the building hasn't burned down, and the world hasn't ended just because I wasn't around to shoulder some unnecessary BS.
Sorry for the rant/PSA about taking personal responsibility for your own bad ass self!
Mae - best of luck with your rocket surgery - you show that tumor who is boss. I think mara has the queso for this round of Pocket Duty so I dunno, I guess I could bring Chex Mix if that is ok with everyone? Unless folks prefer Puppy Chow/Muddy Buddies, can do that too
Minnie - glad you are home at last - a few weeks in the H sounds unappealing. How is hospital food in Spain? We get a Western or Curry option for two meals in the UK. Actually, the curries weren't too bad, I think they are produced in the big fresh food factories west of town (by the airport, where they pack meals for the planes) where all the Punjabi ladies work.
Tanja, Boo, Philly, Rosie, Bev, Santa, Karen, and anyone else I may have missed - *waves* hello everyone!
Hope folks have a great week - may your scans be clean, your surgeries easy, and your psyches be calm.
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Minnie, the Craniotomy (as far as I know) consists of cutting/drilling into my skull and removing or pulling back the piece, then removing the area of dead tissue and either stitching or stapling the skull piece back in place. It sounds brutal but I’m just trying to focus on recovery.
Also, I don’t recall you having brain mets, is this a new finding? What procedure has been done for them? How are you feeling?
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Minnie~ I am glad to see you’re home. I was going to put out a name call today for you . Hadn’t seen you I didn’t realize you were going through so much. My goodness. I hope you’re doing better, now that you’re home. No one likes the hospital. 💕
Moomala~ouchie
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