My Husband, My Life, My Love, My Family, My Cancer
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Tanya, glad you had a good trip
Micmel, give yourself a little task each day while your DH is not with you. Little by little. Stay bright xx
Good luck with the wig Gracie, I love mine! No more hair Drying!!
Keep well everyone. Think of you all x
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Well, I finally got caught up reading this thread… was that a eulogy? Honeys, I assure you, I did not come home to die! All of a sudden, the last couple days in the hospital, the hospitalist and the social worker started pressuring me to decide on a skilled nursing facility to go to before going home. There was only one that had been highly recommended personally, so I said I’d go there. Thought it was all settled until the next day the social worker stopped by to tell me that facility had declined to have me. She thought it had something to do with the cancer treatment and liability, which made no sense to me. My cousin actually talked to them and found that it’s an issue with continuum of care:they offer the full spectrum, and want patients who will commit to that, and since my plan is to die in my own bed, that wouldn’t happen.
Of course, that little glitch only increased the pressure. That’s when I began to talk to the hospital’s hospice arm, and it seemed a perfect fit. As a member of thes forums for 4 years, I’ve seen so many women who have lived for literally years on hospice, some have gone on and off again, and very few who have gone on hospice and died within a short time. So I have perhaps a different approach and attitude toward the whole situation than most, certainly than the hospitalist who discharged me with a whole long list of meds (and supplements!) that I should just stop taking because they won’t contribute to my comfort (something he obviously knows little about, as without my large doses of magnesium my bowels become quite uncomfortable!) Also, these are supplements I have bought and paid for, and if hospice doesn’t want to cover them, it’s ok because they are not cost-prohibitive.
So my cousin and I met with the hospice rep Thursday afternoon, and the ball was rolling. Equipment was delivered - right now I’m keeping me bed but I have a trapeze so I can move around a little easier and also get in shape for the pole dancing competitions this fall - just kidding!
There may have been some misunderstanding or misinformation about what landed me in the hospital this time. I had something called a saddle pulmonary embolism, which happens when blood clots block both pulmonary arteries. I nearly died Tuesday morning as my blood pressure was dangerously low. Subsequent tests showed blood clots in my right leg, which had apparently been sloughing off and sticking in the pulmonary arteries until the proverbial straw broke the camel’s back late Monday morning. My cousin described me as white, cold, and drenched with sweat. It was touch and go for 24 hours, and when they wee out of options, there was only a “kill-or-cure” option. It’s called TPA, and the ICU doc was pretty sure a full dose would do me in, but he might be able to give me half a dose. I must have agreed, because it worked.
I trusted this ICU doc, because last October, when my DH lay in the bed 3 rooms away, this doc was straight with me about the prognosis. He pulled no punches, didn’t sugar coat, told me the truth, and so I knew I could trust him. And he saved my life.
Apparently God’s not through with me yet.
So, no, I’m not home to die. I’m home to refocus. To turn my sights away from the battle and turn toward some housekeeping: taking care of people and things that have needed my attention. Trust me, when it’s my time, you’ll see the drama queen make a few curtain calls before riding off into the sunset (metaphor alert!).
Mik, you are an awesome threadkeeper, just stay the course. You’ve pulled together a great group of gals and even when I don’t post, I read and keep up. Love you all.
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thank you Minnie. I think I will Do exactly that. Thank you for the good idea. I never wore a wig either. I was a hat and scarf wearer myself. I can’t handle the heat mynSH made puns cake and I am having some. Yummy gn ~M~
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Mags, Eulogy? No way! And by the way, we should have known that you had your own plan going on out of our sight. Unfortunately, we had too little information from other threads. So before I forget, welcome back to this thread. You have certainly not had an easy go of it lately. I think we have had quite enough of drama from you,young lady! It is time to behave yourself for a while. I have to admit that I am disappointed that you will not be using the trapeze to ease into pole dancing. That kind of excitement is something we could use. I hope that you are gaining strength and feeling better.
Hugs and prayers from, Lynne
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Magda ~ Ohhhh darling I am so happy to see your update. It makes me smile to know our trooper is still arming her gear. I am trying to stay the course, seeing you here knowing you are Home adjusting. That’s makes me feel like kicking some ass! Love you darling! ~M~
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Mags! Glad to see your post! And glad to hear you are still in here with us! Yes hospice can be used to help us get better too! Glad it’s that way for you and that you got through the blood clots. That’s a lot to go through
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Here’s the view from my bed.
You can see why I want to die here, whenever that may be.
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it looks like a beautiful soothing blue room. Blue is my favorite color. Pillows Check, awesome comphy bed check, beautiful artwork and a bright soft mermaid light coming through the windows Check!. Hospice can last for years! You're doing amazing!! Much love ~M~.
SO happy to see you here ! Tonight. Sleep well dear sister !
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Here’s a close up of the quilt that’s hanging on the wall on the left.
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truly gorgeous. Who made that ?? That’s a good thing to have around to remember some of things it canot do to us Or take away from us. I honestly love love it ! Thank you for sharing something so special! So glad to catch glimpses of your new digs! Sleep well hugs to you ! ~M~
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Mags. Awesome quilt. Love the attitude. Hospice has been very helpful to me and I have been glad to switch from fight mode with exhausting treatments to focusing on living my life as painfree as possible and make more good memories until my time comes to die. But not ready for that today. You are so strong
Micmel. . Glad to hear you are on an upbeat mood yea.
Great to catch up on everyone hugs
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Alright, illimae checking in 😀. Tom Bailey of the Thompson Twins (lies, lies, lies ye-ah) opened the show, followed by the B52’s who played their hits but also many less popular classics (52 girls being one of my favs. The night ended with Boy George who is a natural performer and the crowd ate it up. Lots of fun for DH and I and many 80’s/Boy George themed outfits to appreciate. Goodnight all.
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magda- thank you for the update on how you are doing. I think the first thing we think of when we hear hospice is the worse. I love your room and especially the quilt. I think we all need one so we can read it when we are feeling down.
50s- how is the tamoxifin treating you?are you on anything else? Earlier you asked about my husbands kidney. When we were still young(24) my husband was told he had high blood pressure well he thought he was too young for that and didn't take it seriously. At age 33 he developed an aneurysm and was told he had 11% of his kidney function and within a year he was on dialysis. He was on dialysis for 12 years and got a kidney. The day he got his kidney is the day I found out that I had cancer(1st time). So as you can see our lives have been pretty eventful. The person I feel most upset for is my daughter who will be 17 in October. How does that saying go? What doesn't kill us makes us stronger.i believe that's how the saying goes.
Gracie- I'm glad you got the rest you needed. I'm also glad the port went well and that you had a caring doctor.people would be surprised at how much that makes a difference. when I first was diagnosed with stage 4 I was scared to death! The mo at the time did nothing to make me feel any better. The mo I have now makes me believe that I have at least a couple more years ahead of me. You see same disease just different approaches from the doctor. I'm glad you are feeling "human" again.
micmel- I'm glad you're feeling better. Your dh always knows when to swoop in:)
mae- the concert sounds like it was soo much fun!!!
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Mags, So far tamoxifen is treating me well. I have no idea if it is working, but I envision it blocking the growth of new cancer cells and starving the existing nasty ones enough to bring about their ultimate demise. I will have scans in September to see if it is behaving as I have told it to do. Wow, that is amazing that your husband received a kidney transplant after 12 years of dialysis. It must have transformed his life. Of course, the big BUT is that yours was also transformed, but not in a good way. I hope you are both doing well. Your daughter has seen her parents face a lifetime of challenges in her short life. I have no doubt that it has been stressful for her. On the other hand, I can only begin to imagine the lessons she has learned from your strength and perseverance.
Mae, That concert sounds like it was fantastic. The pictures are great.
Bigbhome, How are you doing? Have your SEs subsided at all with the reduced dose of Xeloda?
Hugs and prayers to all from, Lynne
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Hi Patty~ love seeing you here for sure. Makes me smile instantly. I'm fighting a sinus infection so I am sure that was part of the hole I was trying to keep myself out. DH saved me again. The love has no words or form. It's truly. An amazing connection...
Ok Mae ~ I am Officially officially jealous of that concert, I believe you just filled one of my bucket lists. The B52's. I love dance this mess around. Planet Claire, rock lobster, 52 girls. I am so jealous. But at least I got to see Elton John and Barry Manilow, motley crew. which was also a big bucket list for me. At the time I didn't even realize I was fulfilling it. Love the pictures very much and I am so happy for you having that experience and such fun! Wahhhhooo to you! Thank you for sharing. You're someone I would love to hang out with!!You are so much fun and so damn active. I'm loving that!
Holmes ~ I don't know what I would do if he wasn't in my life. Being in his arms is my strength and my happy place. The only one I truly have left. Peace I find within his presence and looking into his beautiful blue soul sharing eyes. My heart belongs to him and will forever. I have been blessed with a wonderful husband. I adore him. To the ends of infinity.
Lynne 50's~Hoping you're feeling good and love the idea that the medicine. Is killing the bad cells and allowing healthy cells to regain control.. that's what I'm going to stick too!! It is supposed to be 95 today. Uh yuck!
Divine~ how is your foot darling.? Hoping it's not to much of a recovery when it's done. Have you scheduled it yet ? I have to go in on the 30th to have some fat necrosis cut out of my reconstructed breast. From where the drains were located sometimes the cells die. It's a lump The size of an acorn, if it wasn't for the fact that I had a scans the week before I found the lump I may have added a white straight jacket as a new accessory. I just get so tired of procedure after procedure! Enough already.
Waving to Bigbhome 👋❤️ Hope everyone has a good day! Much love ~M~
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Mags-So happy to see your post. Love your bedroom and quilt. Yes, God is not done with you (or us) yet. Glad you are taking a break to heal.
holmes-Your family has been through a lot. I'm sure that what your daughter has seen what the two of you are going through, has made her stronger too.
Tanya-Enjoy your time with the grandchildren and the rest of your trip.
mae-Love the pics. You are a lucky girl, going to that concert!
Minnie-Enjoy your visit with your grandchildren and family.
Gracie-My hair fell out 2 weeks after I started Taxotere (still mostly bald, with a little fuzz, after a year on it). I usually wear scarves and bandanas. I have a wig, that I have worn 5 times in the year I have had it. It doesn't look like me. I had waist long hair that I pulled back in a ponytail or braid, so it was hard to match that. This wig is a shade lighter than my hair color, but has bangs (I've only had bangs once, and immediately grew them back out), it's layered and curly (my hair was curly). I feel like Dolly Parton in it. I tried on over 20 wigs, and finally decided on the last one, just to get out of there. I had it thinned out, but it's still puffy. I'll be wearing it to our nephew's wedding next month, but I'm bringing a scarf to the reception, when I can't stand wearing it anymore. It's very hot to wear too. I wish I had more hair, then I'd go without anything. I do wear nothing on my head when I'm at home. Inside or outside, my head is naked. I hope you find a wig that looks like you. Good luck. Glad you are feeling better.
Micmel-Glad you had a nice weekend with you DH.
Another beauty of a day here, although close to 90. Saturday night we went to a neighbor's. There were 3 couples there. All neighbors. We chatted, drank, and played darts outside, until midnight. We had fun, although my husband was tired (he got up at 4am to go to a golf tournament). We all agreed to go to breakfast the next morning. We met at 9, and went out to eat. The food wad delicious! (Lynne, it was the Black Forest Cafe, yum!). We then went on a trike ride with our friends. We took the trikes to the seacoast. Beautiful day for a ride. We stopped for lobster rolls (well, the other 3 did, I had ice cream, not a fan of seafood). (Lynne, it was the Beach Plum). On the way back from the ocean, it started to sprinkle. That lasted about half an hour, then it downpoured. Yes we got soaked, but the ride was so worth getting wet for. By the time we got home from our friends house (a half hour from us), the sun had mostly dried our clothes. My husband made scallops (the only seafood I eat) for dinner, and they were delicious. A wonder weekend.
Wednesday, I have my scans, and Fri, I see the oncologist. I am going to make sure she does the tumor markers this time, whether I changing treatment or staying on this one. They still don't have my labs up on the online chart, from 7/5. I sent a message, and one of the nurses said my oncologist hadn't sign off of them yet. This place is really ticking me off big time! Between the tumor markers screw ups, scheduling messes, and waiting almost 2 weeks for results, I'm really fed up.
Well, I suppose I should accomplish something today (laundry mostly). This week is my good week, so off I go!
Have a wonderful day everyone! Hugs!
Lynne
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Lynne, hope the scans go well for you. Funny thing with my wig, I bought it on line. Closest to my cut and colour I could find. Looks far better than my hair did, and is admired by all, that's the main reason I love it!!
Magdalene, so glad you are "fighting fit ". Love your quilt. Stay positive.
Mae, great concert. Would love that, dancing the night away!!
Eat the cake Micmel and enjoy it!
Love to all x
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Lynne(Man)~ My DH was sweet enough to stay until around 2:00pm today. He luckily doesn't want to leave me either. It's like he takes a piece of my heart with him. My soul wouldn't be the same without him. I am with you on the wig, my hair was also very long half way down my back,and was devastated beyond words, when it. Was lost. I had one computer made for me. Exactly. It was too hot and I didn't like pretending. I never wore it but two times. I gave it to my friend who was looking for a wig, due to her colon cancer. She loves it. I always had my hats on when I was home. It's more comfortable. I will be with you Wednesday in your pocket for your scans. Love you sweet sister and am so sorry those people just can't get their shit together. Ya know.... it's all so exhausting to deal with it. Taking it day by isnour only Choice or we won't make it wirha together set of marbles. At least I would not. I hope you get your doctors office straightened out. It is so imperative for a patient.
Minnie~ hi there darling I cannot believe you got so lucky picking out an online. Wig. That's amazing. I'm so glad it was that easy. People have a lot of trouble finding one to like at all. Is hat he wig your little cutie pie in that pic is wearing ? Lol. Too adorably funny!
Gonna go to bed early tonight. Fighting a sinus thing. Everyone rest well. Tomorrow's another day lovely ladies.
Blueshine. Hello!
Tanya. Hello darling... Thursday I know is coming soon thinking of you and I'll be in your pocket. Just thinking of you.
Bigbhome, thinking of you and your DH...
Keetmom, Emma? Home ? She Good, she ok?
Magda.... loving that quilt so much and the fact that YOU made your home happen. Way to go ! Rest and enjoy your time in it. Relaxed at home.
Patty, hi beautiful hope your pain is tolerable. And youreenjoying those dss of yours. Love you!
Chelle. Hugs beautiful sister.
Nan, always thinking of you..
egads. Hi there darling.
Runor. Hope you're doing well.
Mae~ listening to B52's and loving every second. Where did they play again? When you just saw them ?
Divine ~ hope your foot isn't causing you too much pain..think of you everyday..
.Holmes...hoping your day was a good one!
Grannax.... so happy your daughter is doing so good that makes me smile, because I know how much it means to mama!! 😊.
Lynne(50's)~ thinking of you and hoping you're having a good day.
MJH~ thoughts to you as well I so wish I was close enough for a luncheon how cool that is for you three. Jealous!!
Daniel & Leslie, sending you a big hello hoping her femur is behaving!!!
Daywalker. A big hello to you too!
Gracie~ sweetheart I understand the hair thing. Maybe you'll be a soft cotton cap person, I was more comfortable that way, for once in my life, I didn't have Control of my beautiful hair, so comfort was definitely happening for me! Sending you hugs. Thinking of you friend. Especially a sleep cap, your head will get cold sweetheart. No one told me. I learned the hard way. Especially with AC and in the colder temperatures.. forget it!!!! It would have been a bad scene if I had a cold head to sleep. It's different for each. But just wanted to mention it to you. Just in case!
GP my friend. Hope all is well. Robin as well.
Good night and much love ~M~
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View of sunset
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Mom and laney selfie
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Keetmom~ magnificent sunset. I am not a selfie kinda gal. But you can clearly rock one ! Loving the pic. Hope everything is doing well for you and the kids..and of course DH... . much love ~M~
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micmel. Get well. Sinus infection sucks
Love the sunset
Mae. So jealous of the concert
Love the mom and laney selfie
Hi all
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keetmom-Love both pics. Just beautiful!
Micmel-Glad you got to spend extra time with the hubby!
We are suppose to get some wild weather here, this afternoon. Major thunderstorms (strong winds and a chance of hail) and a chance of a tornado (I hope that doesn't happen, they are rare here). I think I will stay inside today. DH has a couple of jobs in the mountains and is staying over at the Mount Washington Hotel (where one job is) tonight. He asked me if I wanted to go. He forgot about my 8am appointment tomorrow. I would have gone otherwise. It's a couple of hours from here, but this way, he can check on the progress today, and can go to the meeting in the morning. He stays for free, as do his workers. It's one of those grand hotels that people would come up for the summer at, in the early 1900s. I've only been to have drinks and appetizers on the porch. One day I'll stay there.
I got to see my grandson briefly, yesterday. Matthew told me about all his did at cub scout camp. He loved it and wants to go again next year. Aiden said it was his turn to talk after awhile. But it was time to leave. Their father (who is still out of work, from his appendix surgery) was just picking up a ramp for his 4 wheeler. He's going back to work tomorrow. On light duty for 4 more works (he had to stay out for 2). Unfortunately, their union does not pay for any days off. Luckily, our daughter works full time and he's watching the kids, so they don't have to pay the babysitter. Our granddaughter is at girl scout camp this week. It's only during the day, but she didn't come by yesterday (she's usually visiting us on Mondays and Wednesdays). We'll probably see her tomorrow (our son's overnight with her). Kids are so busy nowadays. Our summers were spent with friends. Swimming or riding our bikes everywhere. Camping with our pop-up. Carefree. I did go to girl scout camp once, in VT, for 2 weeks. Our granddaughter will be going to that same camp in two weeks (her first overnight camp). Both our daughters went there, and to another one in western NH (now closed).
I suppose I should put some chlorine in the pool before the storm hits here (it's already hitting 1/2 hour north of here).
Have a good day everyone!
Lynne
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Lynne, I sent you a PM about a wig that may be perfect for you.
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Strong strong storms here today too Lynne! Love those storms but of course for no one to get hurt. Rain relaxes me, makes me feel calmer. I love the sounds it makes, the rolling thunder and lighting. It is truly amazing what this planet can do. I hope youre getting the answers you need from that office! I am dealing myself with an office that clearly can't read a schedule that they Made themselves! Ugh! Unbelievable the way patients are made to do the hoop jumping and we are the ones that are already sick and fighting everyday. Geeze get it together folks!!
Shetland~ Hello lovely. I have never seen you post here before, but welcome to our home away from home. I sincerely hope you're doing well and not baking in this icky heat. But I find for myself. I hate it too hot and too cold. Never a happy medium for very long. Nice to see you. Hugs ~M~
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Lynne, I love to walk through the Mt Washington hotel, sit on those wonderful porches, and visiting some of the historic areas like the room where the international treaty was signed many years ago. Good luck with your scans tomorrow. I will be thinking about you.
Gracie, Did you have your chemo treatment yesterday? I hope you are feeling okay. Still looking for the perfect wig?
I am on day 15 of tamoxifen and yesterday I started experiencing intense bone pain from the top of my skull down to my ankles. I think (and hope) that it is tumor flare. It seems to be hitting me every where I have mets. I haven’t had anything like this before, but apparently it does happen to a small percentage of women on the drug. It usually only happens if tamoxifen is working (but not to everyone who sees success with tamoxifen) and doesn’t last more than two weeks. For now I will take it as a positive sign rather than moaning and groaning about it,and I will take it easy for the next few days.
Hugs and prayers from, Lynne
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lynn- you will be in my thoughts tomorrow. I pray the scans show at minimum stable. Praying for nead. I have my faslodex shots tomorrow. Ugh!!!!
keetmom- gorgeous sunset! Love the selfie of you and Laney!
Shetland- welcome!!!!
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50sgirl, I have been on tamox almost a year now and I did notice joint pain. A weird stiffness that sets in when I'm not moving, like in bed. It was a few weeks into tamox when I thought, gee, when did it get so painful rolling over in bed? That joint pain persists, but only when I'm not moving much. During the day doing my regular activity I feel no effects. Except for hot flashes. Oh dear god, the hot flashes and night sweats! Andl eg cramps. And hair loss. And memory shot all to hell. Ugh. I hope you are correct and you are having tumour flare because there are threads dedicated to the joys of tamoxifen and I have not yet come across many that describe all over bone ache. I guess you're just special (hooray?).
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Lynne(50's)~ hope you're feeling well and your body aches and joint pains have taken a hike! But If they are a sign of some working going on, which I have also experienced on ibrance early on, I hope you can find your perfect way to combat that darn side effect! I also hope you guys didn't get too bad of storms. I had heard they would be strong up there with potential for bad winds and heavy gusts. Hope it was not your area. Rest up and feel better 🌹
Lynne(Man)~ in your pocket for scans with you. Sending nothing but good thoughts and stable or much improved please ! Thinking of you !
Holmes ~ waving hello to you. Hope all is well with you today.
Runor~ Hello there! Hope today was a good one for you! I did well. I went shopping. Returned somethings and then got the newlyweds a Bridal shower gift or two. I went out and didn't fall over. I'll call it a good day! Goodnight hope all Is well with everyone. Gracie. Thinking of you. Goodnight ladies. ~M~ Magda you as well! Hi Patty ! Bigbhome
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Hello all! I want you to know that while I have not been posting, I have been reading almost everyday , trying to keep up. I have thoroughly enjoyed all the pictures, I have commiserated with the sadness and Madness and fear that some of you have been experiencing . Those of you that have had scans , I have been praying for on scan day and I wait and wait with bated breath to hear your results . However, hearing from Magda made my entire day ! I'm so so relieved to hear that she's going to be okay !
It seems that we have had something of a miscommunication with some of the doctors and now they have decided to do DHS back surgery on Saturday. This surgery is going to Encompass removing all of the hardware that he had installed 18 years ago refusing vertebres 2 and then putting him back together again, yes like Humpty Dumpty. This came as quite a shock because originally we were told the back was fine by two other doctors. Then we thought that he was getting his other shoulder done tomorrow, and when they said no that they couldn't fit that in until the 30th and he called the other surgeon to let them know to back that surgery up more they said oh we have you down for Saturday can you make it. we are both absolutely terrified, as the back surgery that he had 18 years ago rendered him completely incapacitated for 3 months. They swear they do things differently nowadays and it will not be so invasive and he will not be experiencing the pain that he had the last time, nor the long recovery that he experienced the last time. Which took one year. I say I don't know how much more of this we can handle but since there is no choice we will keep chugging away. It just really stinks that he's going to have the surgery Saturday I start back on my Salata on Sunday, which means that by Tuesday Wednesday I am down for the count for 2 days. I am so frustrated! been spending the afternoon scrambling to get people to care for animals, to come in here on Tuesday and Wednesday and help us out with meal prep and the like. What a bunch of crap! It is really tough to be the caregiver guys! plus now I wish I was back on ibrance so that at least I wouldn't have these total days of incapaz total incapacitation. But such is life. I just wanted to let you all know what was going on and why you haven't seen me around for awhile. Know that I am here trying to keep up with all of you and that you all are in my thoughts and prayers every single day.
Hugs to all of you,
Claudia
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