My Husband, My Life, My Love, My Family, My Cancer
Comments
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Moth! You can wear a dress that you got into 30 years ago?!?! We can never be friends.
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Thank you, Tanya and SeeQ. I appreciate it.
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Thanks SeeQ. I have an MO appointment today. She’ll pick the next drug. I’m hoping to get more info. on what’s happening in the liver.
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Tanya,
You amaze me with what you do for your grandkids. That is pure love. I know they will remember these things forever.
Hoping we can get together again sometime in 2021.
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Morning all. 8am here.
I posted yesterday (14 hours ago) but then shut down the computer, turned on the TV (Frazier-- show from the 90's), and then went to bed early. Of course, I had a toss/turn night with the pain, so not much rest.
moth- You go girl with the lab appointment time. Cancer should give us some "perks" sometime. The bread sounds awesome!!!! Would love to have some right now. My mom baked the best bread when I was growing up. I did not learn to cook.
Karen- Pocket duty as you find out about the swelling.
Boo- Pocket duty for you for your appt and what your MO has to say. Check in later. I will be looking for your post.
Not much here today. Frosty morning. Temp says 19 degrees. To warm to 40 today.
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Sitting at my
Palliative care doc. These people are so nice and good at what they do. I’m so thankful to have this group that works with me. I had a talk about my stress and anxiety. And we tweaked my medicine. I’m hoping that helps. I’m armed with Valium now ladies. Look out. My spelling may suffer. Lol0 -
Mel, you're gonna be Mellow Mel with the valium! Good job. Glad they're helping you.
I'm getting ready to go to the private clinic for my immunotherapy.
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Hoping the Valium will help your sleeping for the most part as healing that part of your life is a huge portion of the way our minds deal with stress and anxiety. You've been dealing with insomnia so long, your poor body is burnt out. Best of luck.
Just going to walk for today, nothing any more exciting than that.
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Mel- I hope you find some relief.
I like my Palliative Care team too. I have only had 2 appointments with them so far, and both were virtual. But I am glad I have them in my corner. I am my own worst enemy. I told them pain was my QOL issue. They wanted me to try muscle relaxers (I got the script filled, but have not took a dose yet). Then they suggested Cymbalta for the pain issues. I am thinking NO. So I know that I have to be willing to do what they suggest. That is my problem. I think of the potential side effects, that I don't want to be a zombie. I think "another pill". So, I don't know.
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Micmel - I am hopeful that your medicine tweak will work for you.
Candy - Maybe you give the drugs a chance and see if the side effects are worth the trade off and perhaps if you do experience them that the side affects will lessen over time. I take a muscle relaxer but only when I feel I need it. I also have to take gabapentin. Both meds are for my back issues.
Mae - This is a little bit back on the thread now but I think you should tell your parents what you would like of theirs. It will make them feel better and honestly, we do not know when our time is up or when others time is up either. We lost a dear friend in a 4 wheeler accident last Memorial Day weekend. His widow was talking to my husband a few months ago and commented that in our little social group when they found out about my diagnosis in September 2019 that we all thought I was the one to who had the earliest expiration date and here we were a year later and her husband was gone and I was still here.
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Cowgal- My PCP recommended gabapentin a while ago. I just do not know. Gabapentin, Cymbalta, so many side effects of everything. Seizures, suicide ideations, have to stop slowly, hallucinations. Is it worth it? I just want something I would take as needed at night to make the pain go away so I can sleep. Not drugged, seeing spiders all day. Some have said when they took Cymbalta they had no emotions-- could not cry. I do not want that. I want to feel, to be me. I just want the pain to be less. Sigh... I will continue Tylenol. It lessens the pain, some and sometimes.
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candy, fwiw, gabapentin for me has had no side effects. Tylenol meanwhile is really toxic to our livers - but we usually can't see it except on blood work after many months/years of use. I try to avoid Tylenol whenever possible now.
So it's hard to choose things. I think many of us can take many medicines without noticeable, life altering side effects. And other meds might be causing side effects that we can't see.
What muscle relaxant were you prescribed? The muscle relaxant methocarbamol is over the counter in Canada. I've been taking it for years whenever I strain my neck or lower back. Never had any issues with it at the dose I take. I took it (it comes combined with either advil or tylenol here) after the last round of chemo as I had a lot of musculoskeletal pain.
So anyway...I'd encourage you to be open to trying some of the things your doctors prescribed and see how you do. No personal exp with Cymbalta. It does sound more heavy duty so I personally think it makes sense to try the gabapentin and muscle relaxants first.
I'm home from treatment. The private clinic for my Tecentriq is small and my 30 min infusion takes 1.5 hours with the prep and set up and everything. I wish it wasn't so crowded - the treatment chairs are closer than I'd like.
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Candy - I completely understand. I wish I did not have to take any meds. I absolutely hate opiods because of the horrible side effects. I think the gabapentin kind of tired me out when I first started on it. I still work full time and afternoons were pretty tough. Now, I think I am pretty much back to my normal tiredness from taking all these anti-cancer drugs. Baclofen is the muscle relaxer that I take only as needed and it is 5 mg. I also take Tylenol and put some lidocaine on my back at night if I am hurting pretty bad. The heating pad is my buddy in the evening when I can sit in the recliner. I hope you can find some relief that will work for you.
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Moth and cowgal- The relaxer prescribed is Zanaflex (Tizanidine). Small dose--2mg--at night only. Due to the liver toxicity, I take the Tylenol sparingly. My liver blood tests are ok, but I have the liver mets. And, of course, side effects of so many things is constipation. Which I fight all the time anyway. I tried Lidocaine patches. No help whatsoever.
Moth- Glad you are home. Relax the rest of the day. I am so Covid fearful anymore I would be very uncomfortable with the chairs close together.
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Mel,
So proud of you for making that appt. and getting there. I hope this is the ticket to a better everything.
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Talked to my MO. She is hard to read, so I couldn’t tell if what she read on the report was a big deal or not. She is putting me back on Abraxane, which I tolerated pretty well. There goes the hair again. Oh well. She isn’t even sure if what they saw in the liver was a liver met. She said the next scan will tell us. She doesn’t do biopsies unless there is a reason to. She said if it is a met, we’ll be treating it anyway. So back on Abraxane.
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Cowgal, I appreciate the suggestion and would agree except for one big problem in my relationship with my parents, which is that I don’t like them as people. Unfortunately, they are self centered, materialistic passive aggressive narcissists who seem to enjoy dominating and belittling others, family included. After my diagnosis years ago, I decided that I owe them nothing, especially as I essentially raised myself. Their feeling are irrelevant. They actually said “the wrong kid got cancer” (referring to my older brother, who hasn’t done much with his life), I mean, who says things like that?!
Anyway, enough of my rant. Hope is didn’t bring the room down, lol
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Mae - I am so sorry. Both of my parents are gone and I miss them both dearly. I can definitely see why you would feel the way you do in your situation.
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Boo- Well the devil you know... right? Hoping this time around the med will be kind to you, and slow the cancer down. Wish they could do a biopsy though.
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Mae, I don't think I will ever understand parents like yours. I'm so sorry. My mother-in-law was an okay person (she passed from lung cancer), but she said that she should have stopped having children after my sister-in-law was born. She had two children after, one of them being my husband, who never once caused an ounce of trouble. What the hell? That's just wrong. Luckily, my husband has thick skin, to the point he doesn't care what anyone thinks.
Mel, I’m glad you saw palliative care. I hope the Valium helps. I so want you to have some peace. Hugs.0 -
Thanks ladies. It’s really ok now though. As a child, it was sometimes sad, as a teen it was disappointing and as an adult before cancer, there was a feeling of being expected to be nice to protect their feelings but after cancer my outlook changed and my priority is myself and the family I picked. I am not responsible for anyone’s happiness, none of us are. We certainly don’t need the added pressure.
Speaking of happiness, I’m making French bread pizza tonight and I’m not even slightly concerned about the calories, that is pure joy, lol
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I had nine abraxane. You’re a tough woman BooBoo. May it kick cancer to the curb. And down into the sewer.
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Mae~ you know my Step Monster and dad estrangement so I Understand very much. You just become hard and start to forget it. At least I did until four months before he died. Then I was needed. That's when i mattered to her. He and I resolved everything and I am happy that I got the time with him and being the one that most times was the sole person that took care of him. Although he was in a home for hospice. I picked him up myself and put him into the chair to go outside for his smoke. He wanted me to do it. No one else. I made his drinks . He said I should have been a nurse. We would laugh at that. That's the. Last thing I could do. I was doing those things because he was my father. Only. I wouldn't do that for anyone. I washed all his clothing and showed up when I had the best excuse out of everyone. My cancer. But I pushed myself and took care of hiM. I loved him and he loved me. Sometimes when you're gone from each other so long. It stops mattering as much each year that goes by
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That is an interesting perspective on being gone from family for so long. I have not seen my younger brother for two years and not really interacted except when I called him and his wife out here, long boring story not worth going through. I often wonder if he would have mellowed toward me but not really interested in taking the chance as the lack of toxicity in the family is good. I did notice we both posted on the same post in Facebook. We did not interact with each other nor are we friends on facebook. I unblocked him so I will be able to make sure he is alive, but that is it.
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Mel, I'm glad your palliative care team had some ideas for you. As Mara said, even if it can just help you sleep at night, that should make you feel so much better.
Booboo, I think that would drive me crazy if my MO was not transparent in his thought process. I hope the Abraxane solves the maybe-it's-a-liver-met issue.
Mae, It's good that you have your chosen family - sometimes we relate to them better than blood relatives. I'm on good terms with my family, but we're really spread out (both in years and miles), so having chosen family helps fill the gaps in personal connections.
Speaking of family, I get to see my boy sometime in the next several days. I haven't seen him since Christmas 2019, since was deployed most of last year. I got my dx a few weeks before he left, and couldn't see him because of COVID issues - which really stressed me out. He's going to swing by for a super quick visit while moving to a new duty station. I'm so excited!
Waving hi to everybody else!
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SeeQ,
That is SO awesome that you get to see your DS. I hope you have a wonderful time, even if it’s a short visit.
Mae, when I grow up, I want to be you. I have always been drawn to woman who say what they mean, and do what they say. You know how to set boundaries, and that’s one skill many woman lack. We just weren’t taught to. Rock on!
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Mel - really hope the rx brings some relief. Being sleep deprived causes even more problems.
Mae - I, too, wish I could have your sharp wit and tongue. I always think of a good reply well after it was needed
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thanks booboo and goldens.
But may we never really grow up and keep that kids sense of adventure and awe
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Too right Mae!
We can’t pick our relatives...I too have some issues there and also have some who are good people. We can choose our friends though and I’ve lost some and found some through this process. I think our lives are a bit more ‘concentrated’ than most and some find that hard to deal with. There’s also a bit of responsibility on my part, not to make my friends feel as if it’s a chore to deal with me, so I’m as normal as possible most of the time. But if they ask how I am, I tell them in basic terms and then we move on because I need their normality too!0 -
Karen, I totally agree.
BTW, Brain MRI tomorrow, results on Friday, I expect nothing crazy but will gladly take good vibes
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