My Husband, My Life, My Love, My Family, My Cancer
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@mara51506 Sweet Girl So much you are facing and having to plan for. I know your SIL & DB will be a blessing for you standing by your side. You will be in my prayers today and because you are so much on my mind and in my heart I will light a candle for you when I come upstairs to my room tonight. This is my way of telling you that I will be in your pocket. I know how overwhelming it is to have so many appointments one after the other so close together and how they all connect with each test & follow Up and treatment. I remember how stressed I was during the summer for that reason. I tend not to cry easily, and just to one day at a time in my mind rather than allowing myself to feel the emotion of it all. Then if ‘m told something by the Dr. I break down and cry…I know for now you are holding everything in until you hear from your RO and Neurosurgeon what’s what and numbing yourself from feeling anything. The few days off from all of this will be a reprieve for you to rest your mind and body, so give into that…🩵😘
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thinking of you Mara. Wrapping you in hugs
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Mara pocket duty for sure. It’s good your DB and SIL will attend. Sending hugs 🫂 and care.
Tanya
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@mara51506 - I am absolutely in your pocket and will be thinking of you for sure! Good, good luck!
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@mara51506 ‐In your pocket for your appt tomorrow.
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Sweet @mara51506 , I lit a candle for you tonight because you are in my heart and prayers. ♥️🙏
rest well this evenening
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@mara51506 In your pocket this morning for your neuro appointment. Glad DB and SIL are going, it's always nice to feel family support around you no matter what the news is. Better to be prepared and packed then hopefully you won't need it. Nevertheless I'm so glad your appointment is before his break in January. You have been so patient waiting and it's been long enough. Sending positive vibes , prayers and hugs you way💕
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Dearest Mara - prayers for you this morning🙏🏻🙏🏻. Special thanks for your DB & SIL for helping you.
Shanagirl - my MO just suggested I see my regular ortho doc. So I will plan to do that. In doing some research, it is possible for the ortho to repair the labrum tear through arthroscopy but the recovery is almost worse than a joint replacement. Requires weeks using crutches, which there is no way I could do that.
Prayers were answered - DHs pathology of 11 polyps came back benign. Thanks be to God!
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@goldensrbest Yes, praise god for the good news for your DH. That is an answer to prayer.
@mara51506 Covering you in prayers this morning.
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@goldensrbest I agree, Your MO knows best. Mine works with a team at the Brain & Spine Center which includes the Chief of Orthopedics, Nueuro Oncologists, Radiation Oncologist, and Palliative specialists and even Oncological dentist specializing in Jaw necrosis. These Doctors all collaborate with my oncologist at the John Theurer Cancer Center.
Yes the research I’ve done on the labrum and surrounding area is a tough thing to deal with as far as procedures for pain relief. The last 2 days I have had a lot of pain on my tail bone coccyx area , my next appointment is Dec 29, so I am also scheduled for regular scans in first week of January.. I still eel so tired from radiation and glad I have no appointments till the end of December and January.
Wishing all a pain free day 😊🩵
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OK, got some answers. I found out SIL situation, have to keep quiet as she asked me not to say any details but she has a lot going on, DB is in the middle of all of it so I feel for him.
Brain surgery is definitely happening, he wants the cyst out of there and wants to see about removing mets that were already there. Once done, will have PT and OT and looking into services. They were very nice, need a presurgery checkup.
We also had to discuss my DNR. Typically I am a DNR person but have to be willing to be brought back or the surgery would not happen so signed off on being brought back during surgery. Also need to get a will done and official Power of Attorney as they said that younger brother could be contacted and we are estranged. Luckily will is pretty easy but need to get a legal power of attorney. All of that will be coming.
Surgery will be sometime in January.
I am not feeling nervous particularly because I was expecting surgery anyway, now just have to go through the steps, get services for possible OT, Pt, who knows. I am in own pocket and DB and SIL pocket as well. Life certainly can pile on but we will get through it.
I was really hungry by end of appointment so they took me to the drive in at Mcdonald's, I do appreciate having the same neurosurgeon as well.
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Mara-Thanks for your update. Sounds like it all went pretty well. Glad you have a plan in place.
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Mara - prayers continue for you and your DB & SIL. We never know what others are going through….. Hopefully things will fall into place for you as you get prepared for surgery.
Pocket duty for all
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@goldensrbest great news about your husbands pathology.
Mara sounds like your medical team has a good plan for your care. Nice to have your DB and SIL by your side too.Take care ladies
Tanya
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@goldensrbest Thank you I appreciate that, I know they would too. Learning finally stuff that has been going on for SIL and DB puts into perspective not jumping to conclusions if people are not calling as often and certainly gives some valuable info and for me not to assume it has anything to do with me.
I am making some air fryer frozen pizza , threw some black beans in as well to crisp them up. I quite enjoy the crispy beans and lentils.
I told the neurosurgeon as we were discussing symptoms etc that other than when on steroids, my eating as been fine, I imagine there will be some steroid actions again, if so, need rabeprazole but will find out later.
I have got to say the pizza and beans were super good. The air fryer just makes a wonderful crisp on top of pizza and the beans get nicely crunchy in there as well. Nice not to feel like I need to chop up the beans or other stuff and could use crunchy beans to mix into queso and chips or doritoes as a more nutritious snack. I also was too late for chocolate so just had a fingerful of peanut butter as a small dessert.
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@shanagirl Thank you for your words. I am actually feeling more positive now that things are on track. Yes, day of surgery may be a bit nervous, but that is OK, hospital stay is blah but oh well. I plan to be in an out in 3 days if surgery is on a friday. I will also bring along chargers to plug my phone into and get to look forward to steroids but I do find I can nap pretty well and have a nice sleep mask I can take there as well and listen to my rain.
As to the after surgery part, I will see and have a call with my cancer clinic social worker in January. If I am honest, I will be glad to get back to a more normal routine of Herceptin and the odd scan, echo and routine MRI. I like my quiet life over here where the most exciting thing for me is a good tv program, soap etc and what to throw in my air fryer next.
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Your strength and calm as you deal with this latest development are admirable. Please know that you are surrounded by so many sisters who are thinking of you and hoping for an easy recovery. Make sure you wear clothing with very big pockets!
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@eleanora Thank you, I am glad to have the support of my family here and in real life. Appointments galore coming up.
I slept all night on couch unbroken, weird but there it is. Feel fine. got laundry, floors, cat area and sink to clear up as usual.
I have two more appointments coming up, pre admit stuff for upcoming surgery. 730 am dec 23 and and 10am dec 30. SIL called with those, problem is that my phone does not ring long enough, think it is only 15 seconds and have not found the right code to make it last for longer so when my phone did not pick up they called her. Oh well.
Again, will keep saying that I will be glad when all the preadmit stuff is done and get down to the actual surgery. My biggest issue for myself is just fatigue, when I was going through this the first time I was hopped up on steroids and no almost 10 years later, it is just a lot. I am still feeling pretty positive currently.
Meal is looking like almost a snack, going to crisp up some black beans in air fryer, once those are done, take queso and heat it up separately. Put beans, some tortilla chips and Doritos crunched up and have as more of a snack type vibe. Thinking of an egg tortilla later.
I do hope everyone has a good day, in pockets for all of us.
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My goodness, am cooking a bit of a mystery frozen thing in the air fryer, it is not pizza but cannot tell what it is. It is round, could possibly be sausage but not sure so heating up with garlic and black beans in the air fryer. I may add queso and doritos to the mix.
Mystery solved, it was old mini pizza but after all the time in freezer, toppings not there. I still want to heat up tostitos queso, add some sour cream and crunch up some doritos. Will tear apart the pizza once cool, add the doritos and tortilla chips and put everything in a large bowl, should be good.
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@mara51506 Wow you always totally amaze and inspire me with your focused determination in going about your day which includes your nutritional self care as well as appointments, along with keeping up your household chores, and arranging para -transit etc etc. I still like to think of you as the engerzier bunny, with a strong survivor skill. I’m always in awe of you girl🥰🩵 get some rest. and I’m in yours & SIL’s & DB’s pockets
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@mara51506 - I agree with the others, that your resilience and ability to handle all of what you're going through right now is amazing. I remain in your pocket and you have my full support and best wishes for nothing but a positive outcome here.
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I got scan results back from yesterday's CT and bone scans, and they aren't looking good. In the past they've always been relatively stable. These seem to show progression in both liver and bones. The doctor added a note in MyChart saying that he realizes these results don't look good and offered to try and schedule an earlier appointment than our currently scheduled date of Dec 31 to go over all of this, if I wanted to, but he says he thinks Dec 31 should still be OK to talk about this and possible next steps, as the pace of growth is still slow. I told him I could wait until Dec 31st and that yes, the results were very disappointing, to say the least. They did a CT scan in the ER last November on the 11th, and none of this showed up at that time, so I'm really surprised that this seems to have all come on so suddenly. We have had a long stretch of very rainy and damp weather, with lower barometric pressure (caused lots of local floods and road closures), and I think that as always that had already made me very sore and achy - had very sore chest from costochondritis/arthritis type pain, plus general arthritic pain all over. I'm wondering just how they know the difference between cancer causing things to light up versus other things like arthritis. Also, I shivered for an hour solid through the whole bone scan and don't know if that affected anything. I asked the tech if my shivering would cause any problems and he didn't seem to thinks so. I just couldn't stop. Those scan rooms are always cold, because of the machine needs, but I've never shivered through the whole thing before, but yesterday the whole hospital/clinic seemed cold (more rain and dreariness all day) and my friend who went with me was cold too, but she did manage to warm up a bit better than I did. The scan tech thought the whole hospital being so cold was due to the large windows they have there, plus the really bad weather, which made sense to me. Now though, after reading these results, I'm shivering again, and am wondering if the shivering is part of an anxiety/panic reaction. I have never shivered through a scan before, and I also had no idea when I was getting the scan, that the results would look as bad as they do, so I don't think I was any more anxious yesterday than I've been with scans in the past. Anyway, I'll stop. I'm just a rambling mess right now and don't know what to think. It wouldn't surprise me if some of this is progression, but I also can't help wondering about all this weather and arthritis kind of stuff too.
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@threetree Thank you, it is just very busy now, got more appointments added including Jan 7 as surgery date. In between the pre admit stuff, there will be another CT and MRI as well. I just want to be done and out of the superbusy time. I really have no choice but to get this out of the way. Once I am cleared, can just walk circles around my hallways near my room like I did last time but wearing sneakers this time.
Also need to bring charging equipment for my phones and tablet with me and get real food brought over when people visit with me.
@shanagirl I admit that I have been dozing a lot on the couch but that is fine, I will make food and cleaning a priority and pack up my little red suitcase to hold everything. I do know fur babies will be in good shape while I am gone. Not sure 3 days is realistic to get in and out like the last time since Jan 7 is surgery and they do not let you out over the weekend. Looking to be at least 5 days. If I do as well as last time, it will be quick.
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@threetree, I am sorry to read of this possible progression, but once again we seem to be shadowing each other. I saw my oncologist this morning and she has taken me off oral meds as I have become endocrine resistant. My next step is IV chemo, which I really don't want (who does?) but will try. I told her if it was bad I would stop. She knows QOL is important to me so she will try a low dose with two weeks on and one week off. So, that is my Christmas present…arghh… At least I won't start for another two weeks so I get a little Christmas break.
@mara, you amaze me. I am stressing and mine is just some chemo. Puts things in perspective.
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@intolight, @threetree -Sorry for your disappointing results. Prayers that your new treatments will be tolerable and effective, with many more years of a good quality of life.
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@intolight and @threetree I wish I could give you a hug right now with all you're going through.
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@intolight - I am so very sorry to hear about your latest situation too! My gosh, this is all so awful, and at Christmastime too! (I also have my birthday tomorrow.) Like you say, what a terrible Christmas present! Well, I commend you for giving the chemo a try; I don't know if I could/would or not if I was in the same situation - I think I'd have to be in the situation before I would know what I would do. I think it's good that your oncologist is starting you off with a low dose. That should help for sure. She sounds really good and nice. I wish you all the luck in the world with this and I will be "sending vibes out to the universe" and have my fingers crossed 🤞that this will work well for you. Sending a big hug!
@chicagoan - Thank you so very much for the good wishes re my new situation. I'm holding out that it might not be quite as bad as it looks, although I'm sure there is some kind of progression, especially in the liver. I still can't help wondering how much all my arthritis, etc. might have affected some of the scan results though. Well, I'll get a better picture when I see the onc on Dec 31. I really appreciate your nice and very welcome thoughts.
@tougholdcrow - I wish I could accept that hug you are offering and would like to be able to give one right back. It's sure nice of you to offer your sympathies and warm thoughts. Thank you.
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@threetree I wasn't sure when I went into the appointment whether I would accept chemo expecting that is what she would say. A big part of me was ready to say "no" I am done, but I just couldn't not try. I know several ladies who have done well on chemo for a long time and I decided I at least had to try. Also, my DH was with me at my request (he usually doesn't go in) and with him sitting there I just couldn't say I was done even though we discussed this and he told me I didn't have to keep struggling for him. I have been fighting this decision for a long time. Part of me wants to keep all this from my grandkids and just slip away. What is the answer? I don't know.
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@intolight @threetree I am so sorry to hear of your treatment changes coming up. That is hard to do when you do not know SE that may be involved, in my pocket for sure.
@intolight a change in treatment is a big deal. What I am going through is similar to the first time around. I will admit not really looking forward to it but at least it is a known experience from before. As long as I have stuff to do whilst sitting in bed post surgery and a sleep mask when bored, it will all be fine. So many here have endured hospital stays, I can hardly complain.
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@intolight The decision to stop treatment or to continue on is definitely a hard decision, I am in your pocket as you decide what to do and hope that the choice is for you as much as others who love you. Holding you in my thoughts.
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