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If It Ain't One Thing...Reposting from my last thread:
Wow, I've been posting on other threads but didn't realize it'd been so long since I'd posted on mine.
CMM is stable. The new drug (durvalumab, a checkpoint inhibitor-not really a drug but an antibody infusion) is still being well tolerated. He's waking up fewer times at night to cough up the phlegm balls. Was four times a night, now is about twice. I can't say if this is due to the durvalumab or the cromolyn inhalers we imported from England (as they're not sold in the US anymore).
He's also seeing less blood in his sputum, which might be a good sign, and since a test I ran showed he was iron deficient, I'm hoping the iron he's taking now will fix his mild anemia.
We really won't know what effect his treatment is having on his tumor until he gets a PET scan in a couple more months. He is planning a long weekend getaway for us in late March to go to spring training in AZ; it's also his birthday then.
Overall I think we're setting into a period of cancer as a chronic disease. Hopefully he can become one of the subset of patients that are super responders to these treatments, but if not, it still may buy him some significant time with a good quality of life and that's something to celebrated.
On an unrelated note - anybody looking for a movie to watch, just saw a 2004 movie Like Something the Lord Made. Really great - the true story of Vivian Thomas, the black lab assistant behind Alfred Blalocks success performing the first surgical repair of a "blue baby" heart. Great cast - Alan Rickman, Mis Def. it's on HBO.
Also looking forward to watching The Boy Who Harnessed the Wind on Netflix - the book was great.
Been wondering how CMM is going. It must be so worrisome wondering if the treatment is working, and whilst it's great that the coughing is abating, twice a night is still a lot.
I'm glad you're both still carrying on regardless. A weekend spring training (whatever that is) sounds energetic if not fun. That can only be a good thing!
Perplexed as to why the cromolyn inhalers are no longer sold in the US. If they're useful why wouldn't they be? Very glad CMM seems to be responding well to treatment though!
Spring training is when the professional baseball teams play their practice games pre-season ; not strenuous for us, we will just be sitting and watching!
Cromolyn inhalers are used for asthma and I guess they just became less popular after steroid inhalers came in and somebody made a business decision it wasn't worth re formulating them into the new pfc-free inhalers. Too bad because they were shown in a study to significantly reduce cough in advanced lung cancer patients and may have some anti-cancer benefits as well. The nebulizer solution is still sold in the U.S. - but now costs $2,000 a month! This for an old drug that was cheap when I trained in the 80's; another example of crazy pharmaceutical piracy in the U.S.
Oh. My. Goodness.
I'm gobsmacked. Just because something isn't made in the US doesn't mean it isn't anywhere else, so to charge $2K/month for something that used to be cheap, in a market as large as the US, is ultra manipulative. I certainly understand why new drugs can be eye wateringly expensive, what with all the hoop-jumping and certifications that must be completed. For older drugs where those costs have well and truly been recovered to go *up* in price is indeed piracy! It's no wonder Big Pharma have such a terrible reputation.
Well, new labs on CMM today. I finally tested him for iron deficiency a month ago when he kept becoming more anemic and his oncologist just seemed to accept it as all being due to the chemo. Turned out he was very iron deficient (one marker, called % iron saturation, which should be 20-50, was only 9.)
He's been taking iron pills diligently 2-3 times a day for a month and today his % iron saturation is only 10% - not the improvement I had hoped for. We will be pushing his oncologist for an iron infusion.
Meanwhile, his CEA tumor marker - not a very good test but the only thing we can follow in between PET scans - is going up
He has his grumpy days and, I hate to say it, reminds me of my ex (in a bad way) at times. I cut him a lot of slack because he is facing all of this and has untreated OCD (which he can't admit he has but it's obvious). It's been a long time since I had to walk on eggshells around my ex and I really don't enjoy being in that position. I'm trying to think of some way to encourage him to try an anti-depressant.
Ugh. I don't know how much more of this I can take.
A little backstory: a few months ago I went away for a three day weekend with CMM. He ended up having a snit fit about people calling and texting me while we were gone.
Now I'm not talking about anything excessive. Things like my adult Aspergers son calling a couple of times to share a funny or interesting piece of news, my best friend calling to ask a question. It's not like my phone was ringing off the hook or anything - just what I would consider a normal amount of interaction. He felt that I should have told everybody to only call for emergencies, I felt that was extreme.
Now I'm on another three day weekend trip with CMM. Our first night here my youngest son has a true emergency ( as in spend the night in jail type). The next day I had to ask my best friend to go help him retrieve his car, which she kindly took a couple of hours out of her day to do. I texted his siblings to enlist their support for him until I get back. There really wasn't anything that could be done about it this weekend so I chose to stay and try to continue to enjoy the weekend ( it's his birthday next week and he'd been planning on this trip for a long time.)
Today I missed a call from my friend so I called her back (I was concerned she might be calling about my son). She wasn't and after a brief (less than five minutes) conversation I cut her off.
CMM got incensed and basically pouted the entire rest of the evening, through a fancy dinner out and after we got back to our room. I finally called him out on how he was acting (I was getting tired of doing all the reaching out and getting nothing back) and we ended up having a big fight.
So basically, he ruined the entire evening because I had a single five minute phone call with my best friend who had just done me a huge favor the day before.
He's so OCD, he just can't let go of things, and he doesn't even understand that he HAS OCD. AAARRGH!!!
I am so sorry CMM acted like a child about the phone calls. He doesn't understand what it takes to be a mother. You are a mother and are on call 24/7 when you have children and yes, your son had an emergency and needed your help. I hope the rest of the trip went okay.
OCD or not, his behavior was uncalled for and it's good you called him out on it. He appears to want you all to himself when you are away on vacation, but things happen and you can't give him "all" of the attention. Things do crop up.
Again, I am so sorry he ruined the evening.
Big hugs (((kml)))
No practical advice though other than to say that you did the right things by your family.
I feel like you were presented with a unique situation with CMM. You did not have much time to really get to know him before he found out he was sick. You chose to be loyal to and to nurture someone going through a really rough time but without getting to know him outside of that honeymoon phase. Are you happy with this relationship? Do you feel supported and cherished and appreciated? Do you feel like the things you are unhappy with are things he can work on? Are they things you can live with? Any similarities between these issues and issues of other guys you dated?
I agree with you. I think a conversation with a person that helped you in what is a really stressful event while you are on a vacation is certainly ok. Did he expect you to be attentive to him 24/7? A little space to talk on the phone or read a book or check emails is ok when you are away with someone for a few days. Life doesn’t just stop.
It's been a quiet, less stressful week. CMM's iron level is still low (despite taking iron glycinate pills three times a day PLUS liver tablets three times a day as well.) I'm hoping his doctor will finally see the need to give him an iron infusion.
Meanwhile his calcium level is back up, perhaps that is some of what was contributing to his irritability, so he's back on a diuretic for now.
CMM had his PET scan and CT today. This will be out first chance to see how his current treatment is working. We probably won't hear about the results until his appointment Friday with his oncologist. Fingers crossed but I'm expecting it to show little change.
Fingers crossed for good news! I often wonder how you guys are going - it's been a hard road for you both.
Iron infusions have finally been ordered, will begin next week. Hopefully he'll feel a lot less tired once that's fixed.
We will find out about the scan results Friday when we see his oncologist and he has his chemo.
Well scan results are in already. Basically little change. The tumor has contracted slightly but is more or less the same size. The pleural effusion is slightly larger but the lung tissue outside the tumor is clearer. No evidence of spread outside the lung.
kml,
In my opinion, it sounds positive. Celebrate the milestones and keep up the good fight.
I have to agree with doodle - what???? Yeah, I know!!!!!! LOL But based on the three friends of mine who have gone through both stage 3b and 4 lung CA, he seems to be doing well and at least on target to hit the median survival. Part of the problem, as I'm sure you are well aware, is you just know too much which makes it much different for you. Yeah, there has not been a lot of improvement perhaps but remember the alternative - including one of my three friends who survived 10 weeks after official diagnosis. I hope you'll take these results as a win as for many patients - they are!
Yes, I know even if this drug just gives him a year of stable survival that's a win. But the results suggest that he won't be one of the lucky 20% or so whose tumors melt away (think Jimmy Carter's brain mets from melanoma which melted away on keytruda) and that's still disappointing (although I already suspected he wouldn't be in that category just from his symptoms.) It's actually pretty much what I expected they would find.
But that being said, radiation is still an option to add I think. There are also some alternative things that we haven't tried yet, and it's also possible that the iron infusions for his iron deficiency anemia will benefit him and his ability to fight the tumor. Meanwhile his quality of life is pretty good, and we have tickets for a Cubs game in June.
Wow. Just learned that a friend may have committed suicide by jumping off a parking garage. More of an acquaintance, he was a good friend to my best friend and very important to the early stages of her music career. I came to know him through her. A lifelong bachelor (and maybe slightly Aspergers) he had a good career and many friends and was very involved with liberal charitable causes. He always had women he dated and who accompanied him to events (he was a fan of music and of the theater).
He was known for his annual Xmas Day party and loved to share his enthusiasms with people, sending people home with dvds of shows he loved. He threw himself a big party at a hotel for his 60th and hired two bands he loved, flying one down from San Francisco, and it was awesome to see how beloved he was by so many people. He was a real mensch.
This suicide would seem so out of character. He did have prostate cancer a couple years ago and was pretty private about it - perhaps it had returned and the prognosis wasn't good? It just seems so out of character, and one of his good friends just spoke to him yesterday and didn't pick up any clue.
I'm so sad for my friend too - this would be the second really important "support" person in her life to die in 3 months, and a third has been diagnosed with throats cancer in that time. All three people that played very important roles in her life and career.
Yes, it's confirmed- the suicide is our friend. This is so tragic.
I am so sorry to read about the suicide. It sounds like the cancer may have returned and he felt he had no other option but to end it before the cancer took its toll on him again. My condolences to you and your friend.
I don't know. It seems uncharacteristic for him to do it this way if it was well thought out like that. A friend said he had been treated for depression - I worry perhaps he had an adverse reaction to an antidepressant. We will know more if they find a note.
Hopefully he left a note...but it's just so sad that he felt he needed to end his life this way. My mother had a friend many years ago that had breast cancer. She fought it and had recovered successfully from it. She appeared as normal as could be and when her husband left for a ball game, she took out a pistol that she had bought and blew her brains out. She left a note stating that she was fearful that the cancer was back and she didn't want to go through the treatments again and just wanted to end it. The community was shocked and devastated that no one had picked up on her intentions.
Keeping all in my thoughts and prayers.
Apparently he had been getting treatment for depression, had some regrets and (relatively minor) financial concerns, as well as possibly some new health issue (which he downplayed to the person who reported all this).
Accolades and remembrances are pouring in; a tweet from the mayor of LA, a gushing article in Variety. He really was loved by all who knew him.
It's so sad. You just never know what is going through a person's head when faced w/difficulties in their lives. You hope that they will seek and continue to seek treatment, but apparently he felt he could not go on. Such a shame. So many people will miss him.
I am so sorry for your loss. I pray that he's found peace on the other side.
A lovely tribute from Elvis Costello today. He was loved and respected by so many.
sorry for the death of your friend KML. Suicide leaves so many unanswered questions in its wake. Truth is, one can never know what's really in the mind or heart of another. Prayers for peace for your friend and solace in good memories for you xoxoxo {{{{{{hugs}}}}}}
Thanks bttrfly. Everybody is trying to find reason in it, but the truth is, depression is a brain disease and sometimes there is no more reason than there is for a stroke or a heart attack. Speculation abounds but no one will ever really have an explanation.
Public Service Announcement -
Think about your wills and about how they will affect people after you're gone.
My friend's estate should be pretty straightforward to resolve - he had just redone his will a few months ago, with his cousin in Chicago named as executor (friend was in LA). But people get downright weird around death and dying especially when there is money involved. Resentments and confusion are ruling the day it seems.
It does make me want to cross all the T's and dot all the I's in my own estate plan so there will be absolutely nothing for my kids to argue about or feel bad about.
I had a list of to do's once the D was final. Estate planning and having a new will drawn up was one of the first things to do once all my financial pieces were tidied up.
Everyone should make it a priority once D has been inked and stamped.
Just saw this quote somewhere and feel like it reflects my post-divorce dating (compared to my marriage):
"Don't stay where you're tolerated, go where you're celebrated"
Despite my spotty dating history, I DEFINITELY have felt more celebrated by my post-divorce dates than I ever was by my exH.
So even though my current gym membership is paid up for another year, I find I haven't been going at all in the last 9 months because it is not convenient enough with my work schedule and CMM time. (It's a good 15-20 minutes from my house). So when a new gym opened up 5 minutes from my house I signed up - and waited and waited while they missed their opening deadlines. It finally opened up last week so I went a couple of times this weekend to check out all the equipment.I've never been a morning exerciser but this morning I tried it out - woke up at 6:00 (only about half an hour before my normal waking ) and threw on my exercise clothes, put in my contacts, was able to leave the house by 6:20 and stash my belongings, go to the bathroom and be on the gym floor by 6:30. 20 minute workout and back home by 7:00 (which is when I would normally get out of bed after spending half an hour reading the news.) So this left me my normal amount of time to shower, dress and eat breakfast before leaving for work. In fact, I could easily have added 10 minutes to that workout and still been on time.
The only drawback of this gym is the pool won't be completed until July and it's small. I may end up keeping my other membership too just to be able to use their pool for exercise in the summer. My membership at the new gym gives me the ability to bring a friend free every time I go, so it's nice to be able to bring CMM or one of my sons. And they have a "theater" which is a darkened room with rows of bikes, treadmills and ellipticals where a movie is always playing - Saturday May 4th they were playing the Star Wars movies
Good on you kml! Kudos for being able to easily squeeze in some daily exercise. I find a zillion reasons for why I "can't".
I have to admit I'm a bit envious - I want a gym like yours! Sounds like a great marketing opportunity for gyms in my home town - I would definitely join one with a 'theatre'. It would be the same, I suppose, as having a treadmill or bike in front of the TV, but a lot neater.
No good deed goes unpunished. That's what my ex used to say. And that's what I'm beginning to think about this relationship with CMM.
Quick synopsis for those who haven't been following along:
Met online, started dating a year ago, 3 months in he loses his job (tariffs affect the company he's working for) and three weeks later he's diagnosed with stage 3 lung cancer.
I step up to the plate, going with him to all his chemo, bringing all my medical knowledge to bear on adjunctive treatment, buying him supplements, etc etc.
Late fall, I use his laptop to access my email, I think I've closed it but apparently I didn't sign out, he goes crazy going through all my emails and is furious that I haven't been 100% honest about communication with my crazy exBF. It's true - he was so irrationally jealous that I hid some things from him - I didn't think his jealousy was reason enough to completely cut off crazy exBF from simple help like refilling a prescription or giving him a few more months to figure out a storage solution for the stuff he still had stored in my garage. It's not in me to be mean, and I'd rather crazy exBF, who suffers from bipolar, be stable enough not to land on my doorstep, and feel these few things help keep him steadier.
Anyway, we get through that. Occasionally CMM wants to check my text messages or such. Tonight I'm home sick with bronchitis and he insists on looking at my phone. He starts digging through my photos. Once he gets to last summer I make him stop. I know he's eventually going to get to old pictures that include crazy exBF and I'm sick and don't feel like dealing with his jealousy. Plus it just feels like a super creepy invasion of my privacy. Now he's giving me the silent treatment (really? At this age?????)
I've NEVER dealt with a jealous lover, I've NEVER cheated on a lover, and I've bent over backwards to care for CMM despite him driving my family members crazy with his insane OCD. I have NO interest in getting back together with crazy exBF, I just don't want to see him dead or living on the street, and if I can prevent that by a couple simple acts of kindness I will.
I don't think great sex and good cooking is enough to make me want to stay in this relationship. I don't want to abandon this guy while he's in the middle of treatment, estranged from his daughters, and with no real social supports. But really, if it hadn't been for his cancer, I think I would have broken this off a while ago. It's not working for me. If he can't appreciate all the effing effort I've put in to helping him and taking care of him and wants to focus on obsessing about an exBF from two years ago that I'm NOT ever going back to, I don't think he's redeemable. He's got some kind of personality disorder or maybe it's just his bad OCD but he's got no insight.
Ugh.
I've been wondering for a while how long you'd stay happy with this guy. Your decency and innate humanity has made you feel obliged to keep this guy going, and whilst I can see why, I can also see it's going to exact a high toll.
If you didn't think CMM was redeemable, I'd have asked if letting him know what his options are should he continue his irrational behaviour might work. You're a smart woman - so I think if you think it's never going to work for you both this isn't really going to be a plan.
Would it be possible to break off your romantic relationship whilst maintaining a caring one re his treatment etc? A bit like you do for crazy XBF?
Yes, that's what I would do.
kml - Sorry to hear that you are reaching the end of your patience.
I think it's been discussed here and there in recent months but yeah - jealousy is very much a thing. I know that with B and I that she seems to have a fascinated interest in all my past history and I just feel rather uncomfortable with her own disclosures. She is also on good terms with pretty much all her former partners other than her first ex from more than 20 years ago. I find that that "green eyed monster" does lurk within me and need to swat him down reminding myself that that was the past and this is the now.
I'm not surprised at CMM's jealousy or paranoia. I expect that it is perfectly common albeit unreasonable. After all - he could hardly be expecting you to be virginal and waiting for only him. And as you said yourself and it had quite the impact on me, wouldn't I prefer someone who was caring vs someone who would just cast others aside.
Proof of fidelity is probably even harder than proof of infidelity. It comes down to trust and despite any amount of verification we all here know that it is possible to hide an indiscretion.
I know that you've examined your own situation and your own reasons for it continuing and you even posted a joking reference to being there because you can help him.
I know that any choice you make will be tough but I do hope you do it with your own best interests in mind.
I'm not surprised at CMM's jealousy or paranoia. I expect that it is perfectly common albeit unreasonable
It really has NOT been common in my life. I've had plenty of boyfriends both before and after my marriage and never actually encountered this once; likely because I've never ever been a cheater or a flirt. I'm afraid this has more to do with his controlling nature than with anything about me. And that simply doesn't fly with me.
And for cripes sake - do NOT pick the night I am home sick, feeling crummy, to indulge your paranoia, okay?
Honestly, if I thought he was amenable to talking it out I'd try going there again - but one thing I've learned about him is he has this strange rigidity of thought - whether it's the OCD or maybe he's on the autism spectrum - but there's no getting him to see another person's point of view.
When I was 18 I was in a relationship with someone that was really jealous. He went through all my stuff. Was constantly checking up and accusing me of ridiculous stuff. Turns out he was cheating and had cheated in his past and continued to cheat with future girl friends.
I have never ever tolerated jealousy or a guy going through my stuff after that experience. Usually they don’t trust you because they don’t trust themselves. Has no right to read your texts or go through your phone. You should never feel like you have to change how you behave with people (like crazy ex bf) to make your current partner feel better. (When your behavior is innocent). That will slowly and gradually evolve into you feeling like you are walking on egg shells the whole time. It’s dysfunctional if not abusive.
I am really grateful that you were direct with me regarding my ex bf. I am so much happier not being with him. I feel like a giant weight has been lifted off of my shoulder. I would like to be equally direct with you. You don’t seem happy. His behaviors would not make me happy. His behaviors are pretty dysfunctional. You have no history with him and I think you can help him medically as a professional or as a friend without having to be tied to him romantically. You are not dumping your long term boy friend when he got cancer. This is completely 100 percent different. And if he doesn’t get that, it’s on him not you. I think you need to put yourself first.
Would you ever ask someone to check their text messages? That’s really not normal.
I agree, Juju. I also wouldn't dig all through someone's email account if they accidentally left it open on my laptop.
I don't suspect him of being the cheater type. I think he's insecure because his wife cheated on him and being sick/unemployed is kind of emasculating. But it's funny you mention that, because the one time my ex-husband went through my phone call records on MY phone, it was because HE was having an affair and it must have suddenly occurred to him that I could do the same! lolol all he found was a call from the auto mechanic about my car being ready.
CMM is barking up the wrong tree because I am SO not susceptible anymore to anyone telling me what I should do! I actually have kind of a bad attitude - it's sort of "If you don't like the way I do/handle that, just get the F out!". I've cut him a lot of slack because of his precarious position and his illness but my patience is definitely wearing thin. Don't worry about me, I won't stand for more than I'm willing to handle.
Your recent posts have surprised me a bit. You are an intelligent, tough, fierce woman and it surprises me that you would put up with someone going through your personal stuff. If one of us was posting that our man was doing what CMM is doing, you would be the first one to jump in and say that we shouldn't stand for it. I think you are a kind, compassionate and caring person, but you certainly wouldn't advise other women to stand by a man just because he was sick. It is admirable, honestly, that you have stuck by him to lend him your medical knowledge and to be there to help him navigate the uncertainty of all he's dealing with. That is the stand-up thing to do and you have done it with grace, dignity and strength that makes it so easy to see why so many on this board respect and value your opinions. We don't know each other in real life, but I well imagine that you just absolutely are one of those people who have your stuff together.
I say all that to ask this: are you happy? Because, despite his sickness, if you are not happy, what is the real reason for sticking this out? I may be making incorrect assumptions, but it almost seems like you have shifted from girlfriend to caregiver. I don't remember the last time you posted about something kind or loving or anything that CMM had done. Most of your posts are about his extreme OCD or how he is intolerant of your children or his sickness. Maybe I'm a crowd of 1 here, but I just don't think you should feel obligated in any way to stay with him if you are unhappy, just because he is sick. He was dealt a sh!tty hand of cards, but that isn't your fault and honestly, it isn't his either.
Apparently some posts are getting all up in my feels today and striking some deeply personal cords and this one definitely is because my XH had some serious medical issues and almost died and I stood by his side because I loved him and wanted to help him through it all. Then, when the danger was passed, he dumped me for someone who had not had to dress his wounds, help him bathe, do EVERYTHING for him. He tossed me aside like I was no more than a nurse, though I had been the one who sat by his bed while he was unconscious in ICU. I slept on the cold hard floor in the cramped, cold waiting area and sat and held his hand and rubbed his hair during the 2 hour time slots I could get into his room, only to go sit back in the cold, dank waiting room for hours just to get a few hours at a time with him. It is a thankless and tireless task to deal with someone who is in the throes a serious medical issue, as you well know. Don't let that cloud your responsibilities to yourself and taking care of you. You are doing a noble thing standing up for CMM, but don't let it drag you down in the process.
Don't worry, I would never let him drag me down. I kvetch here about the things that bother me but most of our time together is actually quite good, and I'm trying to avoid the possibility of him being in a situation to die alone - a distinct possibility if I were to just walk. But if he can't get any better at some of the things he needs to work on, that may be the ultimate outcome. And if he continues to improve clinically (doubtful but possible) then he could be in a better position to be on his own.
Hi K ... the one thing I'll add is that people generally end up in situations of their own making, in some form or another. Sure there are tough breaks in life, we all have those. But it's how we chose to handle them that shows character.
I've not had a warm feeling about CMM for a while. You know best.
xoxo
Happy Mother's Day, to all the moms here. You are your kids' rocks.
Thank you! Happy Mother’s day to you as well.
Wow, guess I've been posting everywhere else but on my own thread!
My middle son graduated with his masters in social work. We had a celebratory lunch afterwards with my oldest son, my mom and CMM, and my ex and his wife. It went fine. His wife asked me about my music so I had the opportunity to mention how I played in Central Park last year with Jose Feliciano and Maria Muldaur etc. - nice opportunity to "one-up" my ex who thought HE was the musician in the family lol! But really, it was all quite civilized and even though seeing him still makes the hair stand up on the back of my neck a little bit everyone was quite polite which is great.
I've come to the enlightening but somewhat disturbing conclusion that CMM's OCD may not be simple OCD but actually OCPD - Obsessive Compulsive Personality Disorder. The biggest difference is lack of insight - people with OCD are usually somewhat bothered by their compulsions, whereas OCPD are not - they just think their way is the right way and nothing is wrong with it. Harder to treat unfortunately because they don't perceive it as a problem. SSRI's are supposedly somewhat helpful even in OCPD but I doubt I could convince him that he needs to try them.
There was a fly in the kitchen the other day - one - and it was a major Hazmat issue in his mind. (We actually are bothered very little by bugs here in So Cal compared to most other parts of the country.)
Meanwhile his iron deficiency anemia remains mysteriously resistant to diagnosis or treatment. We cannot find a cause, even after I advocated for additional testing based on hematologist's common diagnoses for "unexplained" iron deficiency. And the iron infusions only bumped his levels up very temporarily. If we could fix this problem he would definitely have more energy. Otherwise his cancer treatment has him very stable at present. Considering I kind of expected him to be half-dead by this time when he first got his diagnosis (13 month median survival with standard chemo/radiation for his type and stage of cancer) he is doing very well and these new checkpoint inhibitor drugs are changing the game for lung cancers.
Congratulations to your son on his graduation! I'm sure he's glad he's out of school and can move on to doing actual social work. If he is anything like his mom, he will be a success in his field.
I think you might be on to something with CMM. He does tend to obsess more than most who are OCD.
Have they thought that he may be passing blood or bleeding internally and losing the iron that way? I hope that they can figure things out for him so that he'll feel better.
Kml,
I am blown away with one of your sons.
D18 is studying Social work. A couple of weeks ago, she shared a story of a 26 year old who is in her class.
She tells me how interesting and heartbroken his pass is.
Heroin addiction, bad anger and boost of depression. Been clean for quite awhile and battles life head on.
She said everytime he shares his story, we cry and so does he. He is an inspiration to all of us.
Shortly after, i come on here and see your post on Andrew' s thread.
Today, you write about your son graduating in Social Work.
If D18' s classmate is not your son, someone here is living his life parrallel to him.
Congratulation to him!!!! And to you!!!
Great update! You must be soooo proud!!
Actually it's my middle son who graduated, not the younger with addiction history. However my middle son has had many obstacles to overcome also (he's trans) and I'm so very proud of him. He is a natural at therapy and super brilliant, managed a straight A average throughout.
Hey Ellie!
Long time no chat! Just got my MacBook fixed and DB was on it and figured out my Sign In and POOF - here I am!
What a difference the years make, eh? Remember those early days. I couldn't go 5 minutes without posting!
I made so many friends here, lots of I have met and a number I still talk to every single day. So glad you and I met in Cali with Karen. I also see that Gineen is still around. Spent some wonderful days with her and little G in Disney.
This board saved my life and my sanity. It was so great to always have someone to talk to day or night - someone who really "got it".
My UPDATE: I've been retired for 10 years and happy for it. Moved up north to a lakehouse with Josh (we have been together HAPPILY for 15 years!!!!). Ryan (disabled son) lives with us. Also bought a condo in Florida and spend winter there. Josh is still working so he looks after Ryan on Weekend nights while I'm away and daughter Ashley looks after her brother on weeknights. Speaking of Ashley - she moved up north a couple of years after me. Got a great job that she loves and recently bought a lovely house with a handicapped suite for her brother to sleepover and we made a 2 bedroom apt downstairs which she rents out to pay the mortgage. Neat how these things work out.
Happy Happy Joy Joy.
As for my ex - we have a texting relationship app 4 times a year as he asks to see Ryan and his worker drives him an hour away to visit with him for a couple of hours. I rarely think about him and his maggot. I don't know if they're happy and I don't care. He rarely sees any of the kids and they prefer it that way.
And that's it. I will try to read more on whats going on when I get the chance.
Barb
Hey girl! So glad things are still going well with you and Josh. Sounds like you've also got the nursing worked out for Ryan at the moment? I remember you were having crazy problems with that for a while.
My middle one graduated with his Masters in Social work recently and we had lunch after with my ex and his wife. It was fine, but when he reached out to give me a hug at the end I felt like Sigourney Weaver in Alien! Hahaha.
Don't know how far back you've read. Met a new guy in June last year, in September he was diagnosed with stage 3 lung cancer. I figure I must have been put in his life for that reason but boy was that a hard left turn.
congrats to son on his graduation and to you for as well xoxo
WOW! That IS a lot to deal with! Take care of yourself first Ellie. Always!
Congrats to your son - that is a really big deal. you can be very proud!
There is ALWAYS a problem with Ryan's care and it does cause much stress. I think we've got it together for a while but no extra help for vacations or illnesses.
Well, after 18 years - Ashley met maggot! I did not know it was going to happen. She told me after - he invited her out for lunch for Father's Day and told her he was bringing her. As she doesn't see him very often she told him ok. She also wanted him to meet her new boyfriend. She told me later that evening. I did not react. only care a little bit.
Strangely - the next day she had a Panic Attack at work. So severe she had to have someone drive her home where she went right to bed. I called her (I was in Florida) and mentioned she had had a very emotional weekend (she and boyfriend just became an item, meeting maggot, having an impending guest arrival) and she didn't really see the connection.
Had a great weekend in Florida other than a 4 am hotel evacuation when the fire alarm went off. Not fun! But a great fashion pj parade!
My stress has been high lately but I'm working on it.
Cottage rentals going ok but people are so d@mn flakey. They say YES then won't send in agreement or $. This has happened more often than not lately and I am SO done with it.
Anyway, thanks for listening. I should pop in more often. Just never have much to say anymore.
Barb
As for her panic attack - make sure that's all it was. Young women can have a type of benign arrythmia called SVT (supraventriular tachycardia) where the heart suddenly starts racing. It's not particularly dangerous but very uncomfortable and sometimes mistaken for a panic attack when it happens in young, otherwise healthy people. The heartrate will usually jump from 70 or 80 to 160 - 180. You can usually stop it by plunging your face in a large bowl of ice water and holding your breath.
18 years huh? Boy it's been a long time! Who cares about the maggot at this point? She ended up with your leftovers and you got Josh - I'd say you made out in the deal.
Well CMM's newest PET scan is in. Shows some slight growth in the tumor, and now the radiologist is insisting that the fractured rib on the other side (from our accident in October) is a metastatic lesion. We'll see what the oncologist has to say about it on Friday. But his cough has been worse the past month too. Clearly there will be no miraculous tumor shrinkage with his current drug so we will need to start discussing what the next step might be.
Meanwhile a favorite patient of mine - a young man whose mother worked in the grocery store with my oldest son when he was a teen and was very kind to my son, I was able to return the favor 12 years ago and help her son - was diagnosed this week with an aggressive lymphoma. F-ing cancer, I've had enough!
I am sorry to hear, that is tough stuff. My good friend who is roughly 68 lost her daughter to an aggressive form of lymphoma and she didn't live but 3 months with it from when she was diagnosed. After losing her daughter she has never been the same. Her daughter passed at the age of 23.
Sometimes this world makes no sense.
Yes it's rotten. He's an only child I believe and his mother survived breast cancer a couple of years ago. Still, treatment odds aren't terrible - about a 50% 5 year survival and that's not counting on newer second line treatments like CAR-T therapies which can be quite miraculous, so I'm hoping for the best with him. He presented to the ER with nausea and chest pain and they found his white blood cell count was 50,000! (Normal 3,000- 10,000). They gave him his first dose of chemo the next day and two days later his white count was low at 1400, so at least it is very sensitive to Rituxan. Problem is, he's in Hawaii and would like to travel back to California so his mom could care for him but he shouldn't travel when he's immunocompromised with a low white blood count (breathing everybody's germs on the airplane) and he would have to time things carefully between treatments so there is no lag time between his last treatment there and first treatment here.
Wow that's crazy.....I have a good friend of mine that just got diagnosed with colon cancer and he is 43 I think. His pet scan showed that it has not spread but he is concerned about the amount of his colon they will have to remove. I think he started his radiation pills last week.
I know I've said it before but it bears repeating, CMM is beyond lucky to have you in his life. I know he may not act that way at times but putting myself in his shoes I'd be beyond grateful - in fact getting sick or dying alone is one of the few motivators I have left to even attempt to find someone. Another point to the positive, since I'm on a positive, glass half full bent here, is that it's looking more and more like CMM is going to beat the median survival rate. It's also sounding like he's doing it with a decent quality of life as well. If I were CMM I'd be very thankful for KML.
^^^^what don said^^^^^
I’m really sorry about the results of his tests. I’m praying he beats it
Thanks you guys. Yeah it makes you live in the moment and appreciate things. Tonight we're going to go see Ron White, the comedian. (They call me Tater Salad).
If I were CMM I would be making sure you were sure that he is well aware of how lucky he is. You are awesome!
Well we saw the oncologist today before chemo, plan is to add radiation treatments (he'll see the radiation oncologist Monday). Also his anemia continues to worsen so they will finally give him a transfusion on Monday.
CMM had a grossly bloody stool last night - just once, thank goodness, but worrisome since he had chemo yesterday and one of the potential side effects of this chemo is colitis. Normally they would treat that with steroids but he cannot take steroids (they cause him to have intractable hiccups, once lasting 6 months and losing 50 pounds). I'm afraid this may develop into a problem limiting his use of this chemo, and naturally, his oncologist is going out of town for the month. And of course it doesn't help his anemia any. Geez.
oh no! hang in there xoxoxo
Thanks. I will mention that to her.
I know I definitely got the better end of that divorce. rarely think of them any more.
Hope things are going better for you.
It was nice to pop in.
Barb
Ok, going to gripe here about a minor thing. CMM's driving drives me crazy! I honestly have never experienced someone whose driving made me so nuts (except maybe my H when he was in crisis and became an aggressive driver for a minute).
It's not that he speeds particularly, it's that his driving is aggressive - and it makes me carsick. (Note: I'm very prone to carsickness but usually am ok in the front passenger seat unless it's a windy mountain road - then I have to drive. )
It's like he doesn't see down the road, so everything is accelerating and braking. Example yesterday - on a busy 4 lane road, light ahead turns yellow but he is still accelerating. Why? We're a block away from the light, this is when you should ease your foot off the accelerator. Instead he's still accelerating and then of course has to brake harder. All that accelerating and decelerating makes me carsick.
Another example - we are on the freeway in the fast lane and the brake lights go on on the car in front of us. Instead of slowing down he's accelerating to pass the car on our right. There's so many things that can go wrong with that scenario.
The constant speeding up and slowing down makes me carsick and the aggressive driving leaves me shouting "watch out" more than he or I would like. I've honestly never felt this way with anyone else's driving. (And he always drove this way so I can't blame it on chemo brain). I'm sure too once I'm carsick I'm more irritable about his driving.
He says my driving bugs him too but that's because I'm too relaxed - I let people in front of me, don't change lanes all the time like he does, I'm not rushing to get anywhere or critiquing other drivers.
I drive more often than not when we're together but yesterday he drove and ended up getting mad at me for back seat driving. Honestly though I've never been this way with anyone else's driving.
LOL - Big hugs ((kml))
I've been told that I drive like a long-haul trucker. One of the reasons perhaps that on my 2010 Corolla I'm still on the factory rear brakes after 534,000 km. Only one serious accident in who knows how many miles.
My son-in-law drives like CMM - always makes me nervous when I'm in the car with him.
Well, i think he's coming to some awareness without us having discussed it further. Last night he was talking about his drive to chemo today. (We live 45 minutes from where he gets chemo, I usually drive him but his treatment today is out of order and I'm working.) He decided he'd rather drive himself than have one of my family drive him - and this is not like ordinary chemo, it doesn't really affect him much.
However, when he was talking about it last night, he was talking about taking the surface streets back rather than the freeway and when I asked why, he mentioned his reaction times. So maybe he is starting to realize on his own that his reaction times are slowed, and maybe that's why all the speeding up and slowing down.
Horror story from a patient yesterday. Her sister was unmarried but living with her man for 14 years. He's 63. She wakes up one morning to find he has unexpectedly died in his sleep (probable heart attack although there has been no autopsy).
She calls the paramedics, who come and certify he's dead so they don't take him. Police and coroner come (because it's an unexpected death at home). But coroner can't take the body until he has permission from next of kin. Hours later they finally get hold of a relative who can okay it; meanwhile she's sitting with the body of her dearly departed boyfriend in her house for HOURS.
I've certainly thought about the fact that CMM could die at my house. As a cancer patient, a heart attack or sudden blood clot or stroke is not out of the realm of possibility. But I never thought I'd have trouble getting the body out of my house if that happened! I'll be getting a legal power of attorney this week.
That's kind of freaky.
B was telling my the other day about a friend whose husband died in the middle of sex. Traumatic I'm sure. I'm sure that's one of the things that my ex was always worried about with her overweight husband with a known heart issue.
Power of attorney for medical decisions would take care of that wouldn't it? I may make a point of talking to B about who has what authority. Certainly not in a place at present to hand it over to her although I'm sure she would do fine.
Well this one I can actually answer... It's very likely not about being allowed to take the body - it's much more a question of where to take it. If there was going to be a police investigation, they would have taken the body for autopsy and/or to the county morgue. The problem is, if the police determined it to be a natural death and no further investigation will be conducted, then it's up to the family to decide which funeral home to have come get the body (and be responsible for costs for services provided). Although I'm off the streets now for nearly 10 years, I dealt with this probably a hundred times or more as a paramedic. Once we were done it fell to law enforcement to deal with but we often were involved as well.
Anyhow, while it's a difficult situation, you might want to speak with CMM about what he would like done in the event something happened - especially which funeral home (cremation counts) he would like to have handle things. If he ever progresses to hospice (let's hope not) they are very good about handling things like this. It's just not something most people think about - until it happens.
BTW, are you and CMM living together now? Or just spending more and more time together?
He sleeps over sometimes and I sleep over at his place.
Oh, and Andrew - I don't know if the medical power of attorney would work in this situation - I mean, it's not really a medical decision after you're dead, is it?
Ok, just have to share an interesting case I saw this week. A preteen boy with a history of a severe facial rash when he eats fermented soy products like natto and soy sauce (mom is part Japanese and they eat a lot of traditional Japanese foods). Oddly he doesn't react at all to soy that isn't fermented, like edamame.
I do a quick google search and learn something new - apparently natto has a compound called poly gamma glutamic acid that is made during the fermentation process. It's been reported as a cause of anaphylactic allergic reactions, mostly among surfers in Japan - because jellyfish stings contain the same compound! How cool is that?
My young patient needs to avoid all fermented soy (he got some accidentally in beef jerky that contained soy sauce) and I prescribed an epipen for emergencies just in case he progresses to anaphylaxis.
I love weird new trivia facts!
Had a great time yesterday at an annual get-together with some old high school buddies. We've known each other for 50 years and still crack each other up. I was so very lucky to have such a nice group of friends in high school (nerds rule!) and blessed that we have managed to stay in touch all these years.
Most of the time I like being self employed. But right now I'm having trouble with an employee and I'm starting to realize she may have a personality disorder.
A second employee was out on disability leave for a serious health crisis and has just been back to work for two days. She has some very minor short term memory issues as a result of her treatment that is expected to gradually resolve and is not causing any real job performance issues.
Employee one is NOT the supervisor of employee two but has had a problem since we hired her with monitoring employee two's work, even when we've told her not to.
Yesterday we even had a staff meeting with our HR person just to try to smooth the reentry (we are a small office with three employees but the company that does our payroll also offers great HR support. ) Employee one was sullen and at the end employee two even asked her if she had something to say. Later, at the end of the day, employee two tells us that as employee one was leaving she told employee two that she "just might not come back" after her upcoming elbow surgery.
We've been trying for the better part of a year to get employee one to stay in her lane. But the stunning lack of empathy for employee two's return (could she not give her a week back before b!tching?) finally hit me and my partner last night. Added up to other bits and pieces of weirdness and we think she actually has a personality disorder. Ugh. That would explain why we've made no progress getting her to lighten up. And now makes me very concerned about keeping her on.
And since she's going out on leave for surgery soon (related to a previous work comp case from before she worked for us ) we can't fire her right now without it looking like retaliation for her taking medical leave.
Managing employees is my least favorite part of being self employed but at least I CAN fire her and am not stuck in a big organization where I might not be able to get rid of her.
kml,
At least with employee one going out for surgery, you and your staff will be able to see just how much the stress level goes down while she's out.
Employee one may have a personality disorder, but it could also be that she is resentful of others and feels that she's not being recognized for her work. I've seen a lot of this nonsense of thinking that they can be supervisors or as we say "lord over" other employees just because it makes them feel better. Upon employee one's return, someone will need to document her behavior and the first time she acts up, call her in and advise her that it is the only warning she's getting because the next time will be the walk to the door.
She sounds like a bully who needs to express her self at others. I'm sorry you are having to deal w/this. Let's home she opts to leave and not return.
I think less of a bully and more of a personality disorder who thinks her way is tHE way things should go. There's been a disturbing disconnect between her nicey nicey behavior towards us and the things that have been said behind our backs. (For example, when first hired, our retiring person trained her. A couple of months after original employee left she called us to say employee one was calling her to b!tch about things in the office - all while saying nothing much to us. We should have fired her then I guess.)
I think less of a bully and more of a personality disorder who thinks her way is tHE way things should go. There's been a disturbing disconnect between her nicey nicey behavior towards us and the things that have been said behind our backs. (For example, when first hired, our retiring person trained her. A couple of months after original employee left she called us to say employee one was calling her to b!tch about things in the office - all while saying nothing much to us. We should have fired her then I guess.)
You know, I'm no authority on the subject by any means, but around here, we don't call that a personality disorder, we just call it being a hateful, mean-spirited b!tch. I'm not saying it is not a personality disorder because I don't know, but if it is, I know a LOT of people with a personality disorder.
It's the lack of insight into the inappropriateness of the behavior that feels like a personality disorder. And explains a lot about why, despite repeated conversations with her about it, she just can't seem to stay in her own lane. We are REALLY easygoing employers, give lots of positive feedback, pay competitive salaries, and this small office is a really nice place to work. Employee two is not the brightest employee even on a good day but she's good with patients, very loyal, and reliable. Employee one is still having her own performance issues on her job so needs to focus on those, not whether she thinks employee two is doing enough.
One thing we learned is that when employee one first came to work for us, apparently she told employee two that she left a previous job by "going out to lunch and never coming back." What adult does that? (She's in her 50's btw).
The Dr. talks to me quite a bit about her staffing issues and her office only consists of 5 people. She also said that during all of her years of schooling, the one thing they didn't teach Dr's was the financial and HR aspects of running your own practice.
Yes it's amazing that with only three employees, all women in their 50's, we still had so much f-ing drama over the years. And my partner and I are the least drama-filled people you would ever want to meet. Our employees have lasted a long time (last receptionist was with us for over ten years, MAs average a least 5 years) so we know we are good employers.