My Husband, My Life, My Love, My Family, My Cancer
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@sunshine99 ain't that the truth re: loved ones suffering watching us having to deal with all this. Mine broke down over the weekend which is very very rare for him, but I think we are making strides towards improving things. He's a 'fixer' and he can't fix this so… Instead he is very good about running to the hospital to pick up meds :)
Had my MRI today and it must have been a newer machine as it had a cool little tv screen I could watch through the head cage. They had on some video tour of Palawan, Philippines (no sound or anything, just drone type video) and I was ready to call my travel agent once they pulled me out of there. Unfortunately I also dozed off momentarily and was so completely confused when I woke up as to where I was I almost had to push the panic button.
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Hello lovely friends, quick update:
My thoracic posterior instrumentation surgery went well with no complications, and the surgeon decided not to complete a laminectomy at T9 (the compressed vertebrae) when he got in there, felt the screws and rods from T7 to T11 were more than sufficient. He said the screws "grabbed well" which meant those vertebrae bones were in good shape - if they hadn't, he would have added some cement to keep the screws in place. A neurophysiologist monitored my nerves the whole time with acupuncture-like needles under my skin - these were placed after I was under anesthesia so I didn't see them. Spent only one night in the hospital, and the surgery was about 2.5 hours. Threw up twice the first night but that was it, and didn't feel nauseated other than those very brief episodes. Was up and walking in about two hours.
I looked at the xrays taken the following morning, and I kind of look like Wolverine now, on xray...I choose to be amused by this.
I am having some pain (it's only day 2) but it's largely emanating from the surgical site where they cut into me, and dilaudid is keeping the pain at a minimum. Having antibiotics, steroids, anti nausea meds, laxatives, and pain meds all coursing through my body is not enjoyable at this moment, but those are all temporary. The next month will be restricted movement, no bending, no lifting more than 5-10 pounds, and no twisting. So slow, gentle, correct healing to keep the spine in a neutral and healthy position.
Will keep you in the loop about the healing process, it is sort of an amazing surgery really, with the goal of spine stabilization and mitigating any risk that the compression, due to bone met, won't ultimately protrude into the spinal canal.
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Waving hello to all my sweet friends here at Mel's place. It's 49 here tonight, brr for us. DH bought me this small heating blanket and boy does it help, especially with the back and leg pain. Plus it warms me up. I stay cold until it's about 80 outside, lol.
Had an excellent visit with the nurse practioner. Never saw one before and I have to say, she spent an hour with me. We covered MS, those boney mets in orbital wall (no need to worry about spread to the orbit and can do spot radiation if they become painful), spinal and leg pain and Ibrance. She was involved in the Ibrance study and has been around breast cancer patients 24 years! I did ask about cutting those awful estrogen shots back a bit, and it was a no. Frankly she wasn't at all concerned about that PET that I was concerned about. I guess it's true radiologists read them and report on them differently. So I had a very rewarding day.
I treated ear ache with drops and gargled peroxide and today I was much better. I ordered Ibrance thru the automated service with Pfizer, so here's hoping they'll send it with zero copay.
Many good postings today. Loved sunshine's couch potato story. giggling. Shanagirl, sending you warm, comforting thoughts. We will get thru this winter and spring will renew us. In pocket for all and hoping for good scans and peaceful pain free days.
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sf-cakes-So glad your surgery went well. Wishing you a full and speedy recovery.
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Sfcakes~ nice to see you and I’m glad your surgery is over and went well. Hugs to you!
sending love out to the room! Hugs as well!
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sf-cakes, I'm glad, too, that your surgery went well. It seems crazy what they can do these days. Now, if they could just cure cancer, right?
Carol
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@sf-cakes glad to hear your surgery went well. I feel like Wolverine too lol. Wish we could heal as quickly as he does! Hope you are able to feel better soon and up doing things you enjoy ASAP. I get a back ache when I do too much bending over anything. The railroad tracks don't bend ...I've had to learn to move differently and PT has helped.
It's strangely warm here, about to hit 60. Two weeks ago it was near zero with 8 inches of snow! I hope this doesn't hurt my fruit trees. Being this warm is making me think about the garden. A friend has offered to help put down straw mulch. I have trouble hoeing or pulling weeds. Garden is probably quarter acre see. Friends help and we share the veggies. Anyway, hoping to be outside a lot soon doing anything but be trapped inside thinking about cancer and watching it slowly eating my bones on the scans. I might have to change treatment depending on next scan and it's stressing me out.
Hugs to all.
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SFcakes, glad surgery went well and in your pocket during healing time as well.
Nothing too much today, having my Herceptin today, tomorrow new OT is coming and Fri echo. Did some laundry and had a breakfast of white rice, precooked, lentils and some shredded cheese, fried those up with ranch dressing, a general rice seasoning, think onions, garlic etc and salt, it tasted pretty good.
This morning, decided to try out bed ladder. I rolled on my side as usual but pulled up on the rope to sitting, can see this being a good exercise. I tied around bedpost and just pull the thing itself, does not work with the rungs but that is OK. I am also going to make bed and show the OT height of bed etc and ask if she can take me through getting up if on my back, perhaps including the bed ladder to pull up. See if I can get up without changes. I honestly don't believe I fell out of bed anymore as much as fainted since I don't remember the first time on floor, 2nd time I tried to get in bed. Anyway, we will talk, I will show the bed and she can tell me what she thinks and hopefully show getting up if in bedroom or if enough to get to sittings and scooch to living room on my bum and pull myself up on the chair instead of the bed. We will find out, show DB and SIL plan execution should it work and OT approved.
Also excited for new Ghostbusters movie coming out in March, lots of nostalgia with old cast and new ones as well. Watched the trailer several times. That will be one I go to the theater for. Nice to feel exciting for something.
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@irishlove So happy to read your post. You sound like you are doing much better and that makes me happy.
@mkestrel Lovely picture. Your garden sounds lovely. I cannot even maintain a small patch of flowers!
@mara51506 You go girl! I like that you have a plan and would love to hear how your visit goes.
Wow…it will be 60° here today with snow forecasted for Friday. Crazy weather…but it is the Rockies!
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Irishlove, so glad you had a great visit with the nurse practitioner! It's so wonderful when someone spends lots of time to really go over everything, it's just respectful.
Sunshine, your DH sounds so sweet, loved the couch french fry comment! And seriously, when is the damn cure for this cancer happening?
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Not some crazy ass MO with cluelessness !
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SFcakes - I'm so happy to hear that the surgery went well. It sounds like you have a great attitude towards recovery and I hope that goes fast and smoothly for you.
Mara - The Ghost Busters movie looks good! I'm sorry the railing on your bed didn't work. I am in hopes the OT has some good suggestions.
Well, my CT today was not as I had hoped but did lend a clue to my breathing issues. I have 3 new mets to my liver, the largest is 2cm. It also shows that my bilateral pleural effusions are larger and that may be contributing to my breathing issues. I had them drained at the beginning of the month but may have to have them drained again. My lymphangitic carcinomatosis (LC) showed up on the CT as well so I don't know if they are just noting it or if it's worse. I am meeting with my MO tomorrow and hopefully will find out a plan. I have been off the Piqray for two weeks and feel that I need to get back on something soon. If the LC is worse I may be looking at weekly Taxol again. Not sure what they would do with the liver. It doesn't really cause symptoms right now. Anyway, it's disappointing. I feel like my body is just getting really really tired and that scares me. I think this is all still manageable at this point though. January has been a really rough month and I'm ready to leave it behind. I'm struggling a little bit to keep a positive outlook on this and not get too discouraged.
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emac Ugh, sorry to hear that your report wasn't as you wished . Yes good riddens to January for you and sending positive thoughts for your MO visit tomorrow. I'm sure they will get you going on something quickly. Hugs.
Mara Good luck with new OT tomorrow, hope your treatment day went smooth.
Irish Glad to hear you had a good visit with the NP. I have come across quite a few good NP's over the years. I typically prefer the doctor but they are good eyes and ears for our docs. Stay warm, that blanket sounds cozy.
Sunshine Cute story with the french fry, need a little humor in all this….
sfcakes Glad to hear all went well and things sound pretty stable now. healing thought your way…
mkestrel Pretty pic! Glad your have a little warm up and can get outside. Longing for warmer weather here too, the winter seems sooo long after the holidays. Yes, anything that can take your mind off things is a win!
Peaceful night to all.
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Hi everyone. Hope that you are spending a peaceful night as pain free and worry free as possible. I think I crossed that threshold of constant worry, nervousness and panic attacks. The meds are helping and the therapist has given me better coping skills. It's cold again tonight, 48 right now. Even the black headed vultures are cold and hungry. About 8 circled for hours over the lot next door and finally settled in the tall scrub pines. Pigeon went out the dog door to the back yard to give 'em hell. They just stared at her. lol
@sfcakes So glad the surgery went well and you are healing. @mara I know you are disappointed in meds not working and scans that weren't great. But look how or bodies respond when we hit the right treatment?? You and your team will get another 100,000 miles out of that body. Just need a new oil change.
@mara Ever since MS I found a few things to help me from falling. One, I keep a commode in my bedroom and DH put buffers on the edges of the one dresser. I spaced chairs so I can grab on. Of course it took a lot for me to accept, but I found a walker that I can also sit on for a break. We put grab bars in the shower and outside shower and use a shower chair. I put rubber backed rugs down so not to slip. If the dogs spill water, I clean it up right away. I also discovered that my blood pressure drops and I feel light-headed when I get up. That may be why you fainted??? So swing your legs over the edge of the bed and give it a few minutes before getting up. I hope you find an answer for bed rails. If not, put heavy comforter on floor.
@micmel I hope you find a good MO. I have a zoom meet with one from one county north of us. Maybe Advent will allow us to see him in person if they can't find a new MO.
In pockets for scans and all your life's needs.
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Hooray for great surgery results. So glad to hear the wonderful news.
It seems as though the NP is the way to go! So glad she was caring and helpful. That's the kind of treatment you deserve 😉.
I see my MO every 6 months and the NP in between. Unfortunately, the one meeting I've had with her so far was not useful. I requested a mild pain reliever for an upcoming 2 hour long MRI, as my painful back would have made lying still difficult. She tried to convince me that I needed anti-anxiety meds instead. It took 2 weeks of messaging and finally a call to the MOs office to get the script. She omitted an important CT scan when she ordered the next set of my routine scans. Called the MOs office again to fix it. I do battle with her again in April.
I feel your anxiety about changing treatments. I have monthly blood work because of fulvestrant shots and I frantically scan the results to see if anything has changed. Same with routine scan days. Fingers crossed that you will not need to change, or if you do, it will be an easy treatment.
So sorry for your scan results, but at least now you know the source of the breathing problem. I have always admired your courage and tenacity in dealing with this relentless and vicious disease, but even warriors need periodic rest and I hope there is some in your near future.
Your DH reminds me of my Dad during my Mom's bout with lung cancer decades ago. He was the "fixer" of all things for family and friends. He loved her dearly and could do nothing to fix her condition. During her hospital stays he dressed in a suit and tie every day and was in her hospital room from 8 am to 8 pm. Everyone who entered was questioned as to what they intended to do and how it would impact her. My husband is the opposite. He considers my illness a great inconvenience and intrusion on his life and offers no help. When I make a request he complies minimally and grudgingly. I'm fortunate to still be able to do 95% of what I need done, but I know now that I will be paying outsiders sooner than I anticipated. Please give your DH an extra hug from me 😉
Eleanora
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Eleonora,
Your dad sounds like my mom. My dad suffered a bad stroke and moved between hospitals, rehab centers, and finally a nursing home for 18 months. My mom was there by his side every day. She would get dressed up and be there from 10 am until 8 pm every single day. She couldn't fix anything but she watched over him to the best of her ability. How I miss her.
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Another wonderful example of devotion. We were lucky to have them. I bet you think of your Mom just as I think if my Dad whenever someone says "May their memory be a blessing"
Eleanora
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Irish, I am sorry your husband is not supportive and leaving you with the stuff to get done, he is lucky you can get the stuff done. In your pocket for that.
My Herceptin was fine. Even walked part of the way home and took bus the rest of the way. Wound up with 40 mins total. I knew I would not walk all the way but partway was fine with me.
Today is busy for me, have new OT person so cleaning house a bit like dusting and vacuuming, she is coming at 2pm, we will see how that goes. DB coming tonight thinking he wants to move bed around some how, not sure how but will listen to ideas. My biggest thought is get rid of mattress and sleep on the topper I had bought and be lower down. I honestly don't think I rolled out of bed since only sleep on back and fainted as I did have an actual flu strain. My bed will not move anywhere but again will listen.
Breakfast is simple, pack of soup noodles. Already premade those, adding black beans and corn and green pulverized in magic bullet with an egg, frying in pan and adding ceasar dressing while cooking, seasoned with vegetable seasoning and salt, should be pretty good. Supper probably will be similar as well.
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Wow Mara-maybe taking a break for a while is a good idea. Funny how SIL wants an apology when she was the one who yelled and hung up as I recall. If the OT thinks the bed is fine as it is, leave it the way you like. I echo the advice of someone else on this thread-I usually sit up for a few moments before getting out of bed just to make sure I won't get dizzy. Keep tending to your self care. Now that you have the paratransit and bus benefits, it is easier for you to do your shopping or get to a mall for walking. With delivery, you can just order the heavy things you need. Sad but who wants to be treated like they are not capable of making decisions for their own life?
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Mara it is your life - you live it the way you want to. The OT is qualified to know about the bed position and what will work for you. It frustrates me that with this disease people - while they care a great deal about you and love you - seem to think that it makes you incapable of making decisions or knowing what is best for your body.
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I am guessing that the best thing I can do for now is just stay away from SIL by extension DB. I am honestly sick of being yelled at wanting to follow what I want that OT saw and approved of. My opinion is steamrolled all the time. Told older brother what happened and that I no longer am changing stuff or discussing anything in house. If I fall and am not unconscious, I will ask no one be contacted as I am capable of getting a cab home if taken to hospital. I don't know when I want to see SIL but not anytime soon as I will holler my frustration out.
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Thank you all, helps a lot. I feel bad for DB because he has to follow SIL as his wife. I just need more independence and as said, delivery once a month is good for groceries and paratransit will help as well.
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Well, looks like there is no support from family for the near future. DB texted that they are concerned I will fall. Following my own and OT advice about not changing bed is disrespectful. He kindly reminded of all they have done for me as if I forgot even though guilt trips are a horrible thing to do to a person.
Now everything is awkward. My final text left it that I am feeling steamrolled when I don't agree, I am comfortable with my set up, especially since approved by OT. Told him I love them both, not sure where this leaves us but both people are angry and I am just a bad person in their eyes.
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Mara-I think you are handling a tough situation with grace. I could say more b/c I am angry on your behalf but sometimes no support is better than support that belittles you.
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Mara Agree with you and all here. I would also trust in the OT, she is the professional. Yep, better to let things cool down for a little. You calmly spoke your thoughts and expressed your love for them and that's all you can do right now. Hugs.
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Mara - you are truly stuck between a rock and a hard place. I’m so sorry that there are issues that are challenging your relationship with your family, especially your brother. But when you have a person that is a trained OT approve your in home arrangements then that OTs opinion needs to be respected. Bottom line is your family is not trained in OT. I hope in things will settle down and resolve the near future. I pray that the anger of DB and SIL turns to understanding. We are all here for you…..
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@mara51506 I second what other posters have said. You need a caring relationship with family, not hostility. I also wanted to say that I am blessed to have a very supporting husband. Not everyone is this fortunate, and it breaks my heart (Eleanora). In pockets for everyone's needs.
Today Pfizer called and said they could NOT process my request for Ibrance thru Patient Assist. Program. They claimed I did not submit proper paperwork. Well, I explained I did fill out everything and gave it to the Cancer Center to fill in their part and submit to Pfizer. OMG, the paperwork is the exact same items submitted in April, 2023 to get me started on Ibrance. So if even one paper was MIA, they could have pulled copies from that time period. DH pulled up income tax return, made copies and faxed everything. Now we wait.
Hoping that everyone has a peaceful and pain free evening.
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Irishlove, I am glad you have a supportive husband. I am just really sad, still crying out the stress, deleted the conversation between DB and I and just pretending I don't have brothers anymore. Not going to post anything on FB or Insta either. Drama is never the way to go. I will keep bopping along, paying bills, exercising more and gaining more strength and resilience and as said, if I fall and land in hospital, ask that emerg contact be kept out of it. I still blame the last falls on the flu strain which I only found out yesterday was the nasty one. Anyway, I know it will all be all right eventually I hope, but we will see.
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Mara, my heart hurts for you. One of the many books I read early on talked about toxic people who want to (insist) “help” you and then they get offended when you don’t take their advice. They blame YOU and, worse, they may condescendingly “forgive” you. I wish I could help…
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Did some bed exercise today, bridge poses and marching legs for 5 mins. I have a routine echo this afternoon which is fine, will walk to bus stop, not much further than other bus stop and give me time to walk. Should not take long. Power scheduled to be shut off for 3 hours today which is fine, all chargers are full charge, should be back on later. Might slip in a laundry to get ready for dryer before cut off. May order a breakfast from McD's as I have nothing to eat that would not require heat up.
Feeling better today, going to forget the last two weeks and move ahead, weekend is not bad weatherwise so can take multi free bus trips this weekend for groceries, small amounts as I really don't need much, may need some lentils as well as eggs and a meat pie or two, we will see.
I hope everyone has a good day and I am in pockets as needed.
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