My Husband, My Life, My Love, My Family, My Cancer
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Hey Mel,
How are you doing today? I hope you feel a little better every day.
I took my Huey to the vet, and they think he has Cushings disease. They gave him a blood test that took all day because of 3 blood draws. I'm waiting for the results. He seems miserable. He is also blind in one eye, so depending on the outcome of the tests, we may need to send him to see Tag on the rainbow bridge. I can't even think about it, I'm so upset. So I'll be reaching out for virtual hugs if we have to say goodbye to him. This sucks.
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BooBoo~I’m sorry my friend. I really know how you’re feeling. I am still grieving my tag. Everyday I still expect to see his golden red fur. They truly own a piece of our hearts. I’m here. We got tag back. So he’s home again. But I miss his cuddles and love only a dog can give. Your own special dog. I am sooo sorry. 💔
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Booboo, I wanted to let you know I had a double dapple doxie who went blind in both eyes overnight. He had what's called SARDS. He also had been downing water like crazy. He was also diagnosed with Cushing's at the same time. He adapted so quickly to being blind. My husband was so upset, but he really did great. It never bothered him. As for the Cushing's, we put him on meds and were able to keep him alive for another two years. I hope your baby can get on some meds and have it help.
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if medicine can get him more years!! I hope his bloodwork is good and medicine is the answer. Years more would be Ideal!! I held onto tag until I just couldn’t anymore. I hope he doesn’t go blind, my goodness.
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Rosie, I agree, would be nice to be told, even over the phone to start a treatment or else get results from a scan. My MO office does not usually call me either when it comes to results, sometimes the dr appointment is a couple of months away even. I do know that if there was something, they would call first. They must know I do not stress over scans too much.
Sondra, your dinner sounds good. Staying in your pocket til results are in.
Hello Mel, hope your day was decent. I did not do much myself, just an hour long walk on the treadmill and pedaled the mini elliptical another hour while I played games for money and watched Once upon a time and Young and the restless. Usually, I would be a day ahead but because I dropped all my streaming TV, I have to go through my local station to get yesterday's episode of Y and R. Still have my phone playing christmas music for a little extra money as well. Going out with older DB and SIL this evening too. Hope I have enough energy, just kidding.
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Sondra, two weeks?! What?! Is it normally that long for your follow up/results? You’re very patient, glad all went well and you’re kicking back with a cat.
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Sometimes my appointment Is a week or so away from on when I scanned. I don’t know what they would do in the case For progression. When it spread to my bones they didn’t call. He told me in person. It’s odd how every oncologist does things their way. It’s not uniform for patients I guess because no one is the same. I wouldn’t want to be an oncologist. No thank you . I’ll just take my old life back please?
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Mae and Mel - I think thats just how the scheduling went this time and they may still be working to old timescales/volumes. February it took almost a month for those scans to be read. The NHS really does better with acute situations as last year they couldnt scan/read them fast enough when they were trying to figure out what was up with my pelvis. But then in June I was called almost a week early as the scans were done and they wanted to let me know the outcome, so its a bit of a crap shoot. I guess I figure if its good then a few extra days is fine and if its bad then a few extra days not knowing is ok too.
Actually Monday I am off to get a second opinion with an MBC breast cancer/targeted therapies specialist MO at Fancy Cancer Hospital, to see if I want to switch. I do love my current hospital and really have the hang of things, but Covid has impacted the health system quite a bit and now that its been a year its time to get a sense about what going private could do for me. If it means I can do bloods/injections/MO (and the actual breast MO, not the registrar doctor, not the MO specializing in glioblastoma stuck on a breast clinic rotation) all on the same day or have more original thinking on treatment, if warranted, then I would be willing to change.
Mel - I wanted to also say that I thought Tag's box was really beautiful.
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KBL,
Thanks for that info. I never heard of SARDS, so I will ask the vet about that if everything comes back negative on his tests. I appreciate the feedback.
Mel, I will do everything possible to hang on to him unless he is suffering. I can't tell if he is, but it seems like his breathing is labored, especially at night. He pants loudly and seems like he's thirsty. So I get up and give him a drink, and then he pees everywhere. Ugh! I am so tired....not getting a good night's sleep. But he's worth it. I love my boy.
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Feeling frustrated this morning. Tired of Covid, cancer, isolation, boredom.
My texting friend texted this morning and got me started on the frustration. He has back issues. Been bothering him lately. Going to make appt with local PT guy for some therapy. I wish I could do that too, for my pains. But... Covid in the area, low counts. I don't feel safe going in a waiting room, having PT therapist (different staff each visit) face to face with me, lying on table where others have been. I know I go to MO and lab, but I try to keep my appts at the minimum. Then he got me upset because he commented about going to several stores trying to find an item he wanted. I have to do online shopping or limit myself to 1 store for in-person shopping, not hopping from one store to the next. If I cannot find something, I do without. Then last straw was when he said there is a car show in the area this weekend that he is going to. Yes, he wears a mask (or so he says), but he has confessed that there are not many that do. I want to be able to do something fun. I don't like car shows, but I could find things that I enjoy and go to them. I am tired of staying in the house.
I know he does not have cancer, so he doesn't need to take the precautions I do. But don't the experts say that if everyone does their part-- masks and social distancing-- that we could contain this virus. So, what he does indirectly impacts me. It keeps me inside due to the spread of Covid in our area.
I am tired of the double standard.
Oh well. Today I am going to bank (drive thru) and getting cat food at pet store (order online and curbside pickup). Otherwise in house.
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Candy I hear you. I am in one of those kind of moods now. In my case I want to do something yet do not want to go out. I was out last night with DB and SIL and while that is nice, it pushes bedtime later which never results in a good mood. I am frustrated easily. I don't feel like walking either. Pulled out the cubii mini elliptical, put it on my yoga mat so it won't move and am using my laptop for some cash. I will stay home until I figure out what might make me want to go out, I am out of room almost for my grocery storage so shopping really is not an option. I think I will take my pretty bags from the dollar store and hang them up with zipties and picture frame hooks. One or two around the house for extra storage. Garbage will need to go out too. That's about it ffor me today.
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BooBoo~That's what started to happen with us. His rear legs wouldn't function at all. Then there was nothing he could do but lay there. The labored breathing and panting were also present as well. Like he ran a week. I always thought he was thirsty. Then he would just stop. The ups and downs get ya My dH was out in the yard at 400 am holding him upright so he would be able to go , and not on himself Someone can only do that for so long. So I am feeling so much of what you're going through.
Sondra~ I've waited over a week before I got annoyed and called When I saw him He called me inpatient and that I have to know everything. He's a small Japanese man and he jokes very dryly. It's taken me years to get him to laugh. He's the big minded scientist. I think they should call , making someone wait it cruel i think.
Mara~ waving to you sweet friend
Candy~ you're not alone in how you're feeling DH went back down for a few nights. So I'm alone. I feel the void already. I'm sick of knowing I have cancer I read this article about Shannen Doughtery. (Sp?) she is stage four now as well, it went to her bones , it was surreal reading how she was going to write letters to her loved ones and videos. And that she intends on 10-15 more years. I thought. Even money can't help your sickness and the dance you'll dance. She's living with it like us all. Olivia Newton John as well same thing. This shit is everywhere. Younger women middle aged women. Older women It has no pattern. We're just stuck. You're definitely not alone. I get jumpy when I'm bored. Like my skin is crawling. It drives me crazy. I cannot sleep all day. Then I won't sleep tonight ! Ugh!
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I read the shannen Doherty article too on a gen x Facebook page, sadly a few comments were things like “she’ll be joining Luke perry soon” and “omg, so sad, I liked her”. I let them know it’s more common than they think in younger folks and to not write her off just yet.
While I appreciate shannen and Olivia going public, I feel like they could be doing much more for MBC with very little effort on their part.
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I totally agree with you Make more of a presence for MBC. More of a knowledge platform and bring attention to this disease that effects all ages. I am totally in agreement. It’s like they are hiding. I guess they don’t want to take on being the face of MBC.
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Micmel, I think it’s because they’re afraid of losing work because people think they’re unable to perform at the level needed but it’s exactly that perception that needs to change and they have the power to change it.
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This goes back to the whole 'we treat it like a chronic disease now!' bs line. No one is discriminating again diabetics for their actual chronic disease, but any of the big ones like HIV or MS there is still quite a stigma so I guess I'm not surprised Shannen didn't want to share. Hell I don't share and look Kelly Preston didn't either. I figure it's everyone's choice but you know, maybe if there were more MBC voices hollering during Pinktober maybe I would have paid more attention.
Regarding Covid, I am so so so so so glad we didn't go back for my sisters wedding. While rates are low and my parents are in a rural area, the actual wedding and some of the guests are coming from very high rate areas in Western Wisconsin. I don't care if its gonna be in a semi open space and folks with masks etc just, no.
It sucks a lot - I want to travel or DO something but either nothing is open or well, we are just waiting to get locked down again pretty much.
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Mae~That's a good point for sure. But They did the interviews are out there. I don't know it seems like they want to be honest about it. I certainly don't know how I would feel if it was me as the face in their shoes. Whoever can keep a diagnosis to themselves is amazing. I applaud you. I just had to many surgeries. I guess they speak when they feel they can. I know each day I am certainly not wanting to do a damn thing feeling this way, so I can't blame them. I just want someone to find a cure for us all and bringing attention to it could perhaps help that some.
Sondra~I don't know how people work. Honestly, there is no way I could work. My body has been beaten up with all the heavy chemo and surgeries. That also amazes me, someone that can continue to work fullTime. And have this full time disease. Something else. I've had a few docs say they treat it like a chronic disease now a days. But have had others not say that. It's a mysterious bag of shit we trudge through. Living each day. I guess it depends on your body. Mines exhausted from fighting, that's for sure. I agree at the mindset that it's a chronic disease as well. The side effects are chronic and accumulative as well. Thus the bag of shit. I wish I could have wine lol. Yes I do.
Does anyone drink wine on ibrance? Does it make you sick ? I never tried it. I'm a chicken.0 -
I see both points, but if I was famous, I'm pretty sure I would pound the drum so loudly that everyone would know about MBC. I agree though that actresses are vulnerable to bias if they announce they are sick, however, good point Mel about how the heck they can work during treatment anyway.
I had treatment today, and there was pink everywhere. I didn't want to say much since I love the girls in infusion, but I do get tired of seeing the survivor sign everywhere. I may say something next week just so they are aware how we feel. I won't be snarky, just explain how it feels to us.
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BooBoo~Remember two years ago when I decorated that bra for a charity and my breast surgeon? Well that event was PINK. Everything was pink. Even the people hosting the events dresses were pink. Sparkles everywhere. Happy happy joy joy. The dress alone cost $800 easy. I was shocked at how commercialized the entire thing was. The woman running had two perfect breasts and made the women uncomfortable that didn’t. I should know. Because I would not be able to wear that dress ever again. So it ended up bothering me all night. I’ll never go to another fund raiser event like that again. Far ass away from those things I tried. But nahhhh not for me. My nurse picked me as her favorite patient and made me a precious pumpkin which I still have. That meant a lot. Maybe that’s why something told me to go. I wasn’t going to go. But I did. She was waiting for me to show up. Sweetheart of a young nurse.
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Mel and booboo, I agree. I understand there reluctance, I’m just disappointed when they choose to keep quiet. If we had a single public example of someone living with MBC (one that didn’t die at the end of the movie), we might be able to deal with our own initial diagnosis with less terror.
Anyway, more sorting and packing today. Tomorrow I’m having lunch outside with my former coworker/bestie Walter. Haven’t seen each other in 9 months, we text weekly but since I’m moving, the time is now.
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Mae~Have fun!!! I remember you talking about your work friend. 9 months is a while. It should be nice! I can’t believe you’re moving ! Exciting stuff here.
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If it was a chronic disease, 40000 people a year would not be dying. Treatments are better than they used to be but there is still no cure. I keep my head down during pinktober. I don't like it at all.
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I look at it like, everyone is different and so is their cancer. Different doctor different ideas. We all know it’s not really a chronic disease. But sometimes it feels like it is because of the endless days of battling that we do. Occasionally a good day comes along. But overall, chronic is pushing it. I do agree that some doctors have that attitude. Others have a do this and good luck attitude. Others have a positive attitude and are glass half full people. As far as pink. I do not like it at all. Not one little bit. It’s a shame because I enjoy October. So pretty and perfect weather. I also don’t comment unless asked, in public. I also don’t agree to any plans. Or fund raisers anymore. If I don’t go out as much I won’t see it as much. I don’t have any doctors appointments this month, it will be over !
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lmaoThis cracks me up. This is what October is to me. Lol.
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Booboo, that definitely sounds like Cushing’s. Hopefully the medication they can give you for it will help a lot. Please keep me posted.
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Late late September to early December is my most favorite time of year, along with late late May to early July. I ADORE October and I already started up scary movie viewing
Just really like the colors, pumpkin spice everything (except Starbucks, ew), the nights drawing in, Halloween. I do have a can of pumpkin puree - maybe Ill make a pumpkin bread today as a treat for the weekend. For some reason powdered sugar was difficult to find in the stores in the last few weeks, but I finally got a box! Gotta have a drizzle on that bread.That Princess Leia costume is adorable!
Mel - you asked about wine. I've never been much of a wine person, but I usually do a white wine spritzer these days (white wine + club soda) or a very very small glass of red. The last dinner party I went to a few weeks ago with Wine People a number of reds and whites were served and I was in everloving gastro pain for two days after that. Could have also been the amount of red meat consumed as I have almost all but stopped eating meat, but I also drank quite a bit more wine than usual. That was my week off too and I'm not keen to repeat the experience!
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I like a nice Pina Coloada with a pineapple or fruit. Not too many but I loved that drink. I just wondered if one would be so bad once in a while. But I don’t want any gastro issues. Anything acidic does that already. I was reading over the ibrance thread to see if there was any mention I couldn’t find any. What I did find of them discussing hair loss. Good grief I can’t handle that. I’m serious. Not again. I can tell already it’s thinning out in areas. I started with a lot. But when I shower I see it in my hands. Could be why I hooker bath when I can. Don’t want to hurry the loss along by any means. Shower day today as a point. Ugh! More hair loss. I’ve started my 48 cycle of ibrance this week. 4 years. I can’t imagine if I’d have any left in four more though. That scares me. Cancer you mean ugly cellular ***hole! I would have just said it but I don’t want to offend anyone!! Lol.
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GM ladies! I hope everyone is doing well. We just got back from a trip to Yellowstone. We had such a great time, saw such much wildlife. The leaves of aspens were changing to a beautiful yellow. Covid wasn't too bad there and they had strict restrictions so We felt pretty safe.
We came really close to one of the forest fires in Wyoming on our way home. The smoke was bad, it seemed like nighttime, blocking out the sun. The sky also red from the flames. It was very scary. I feel sorry for the people living near the fires, I couldn't imagine having to breathe that every day.
Mel, I enjoy a glass of wine once in a awhile. My MO told me to keep the alcoholic beverages to two a month, and only during my off week of ibrance. She also said no hard liquor. I think MOs have differing recommendations.
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Mae,
Good luck with the move. I will never move again. We moved to FL in April of 2019 and bought a house 4 months later. Then had to move again. Almost killed me. However, moving is exciting and a great way to purge. I cannot tell you how much I got rid of. Most went to Goodwill. So freeing!
KBL, yes, will let you know what I find out about my boy. Fingers crossed it is Cushings because we can treat it.
Mel, wouldn't it be cool if we came up with our own MBC campaign using green or some other color to signify the 20-30% of the pink group who become metastatic? We could have our own month of awareness for those of us praying for a cure. Now that is something I could get behind!
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KBL, All,
I just heard from the vet and Huey does have Cushing Disease. DH is on his way to pickup meds for him. I am SO happy right now, because although he has this disease, it is treatable. KBL, maybe you should have been a vet!
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