My Husband, My Life, My Love, My Family, My Cancer
Comments
-
Tanya-Beautiful pics! Enjoy your vacation!
Gracie-I too am a side sleeper (mostly my left, but I switch over a couple of times during the night). My port is on my right side, luckily. Although, I had a hard time sleeping even on the left for a few days, and I am like you, I can't sleep on my back. Also that first access for my port was painful, even with the numbing cream. It rarely hurts now (usually when they take it out), after over a year. I'm hoping your experience is much better than mine.
We took a short bike ride yesterday. It was great to be in the sun. I felt shaky though, so we had to come home. He wants to go on another ride today with our friends. Last steroids were yesterday, waiting for the side effects to kick in, and I really don't want to be on the back of a motorcycle, miles from home, even on this beautiful day. He mentioned we could take the convertible out, and go to our friends house (they live a half hour from us). I'm not really sure what we'll do. I told him to call them and see how she's feeling today. Oh, and he took out a prime rib roast for tonight and I'm sure is inviting our kids over. Of course my mouth has sores and thrush from the steroids now. Sometimes, he just doesn't get it.
Lynne
0 -
Sending out love to you all. Here's an observation I have about us: we all seem to experience the very high highs and very low lows of life. And the in-betweens. Sometimes we have those feelings all in one day! Other times, a feeling is there for an extended time. Dealing with mbc seems to give us heightened awareness of how we feel about the ever-changing worlds around us. We get it. We understand those shifts in each other. There is no judgment. It is a nice comfy place to be ourselves. I appreciate that so much.
0 -
nicely said Divine! I know we get upset with our families but it's hard for them to keep up with how we are feeling. They also want to experience life to the fullest with us. As frustrating as it is for us it's just as frustrating for them. They just want to make us feel better. It's a lot on their shoulders as well. I remember when my husband went down with his kidney i didnt know what i would do if i lost him. Im sure he is worried about it too.
nu,e0 -
you are all so special. So very special and loving. I love that about us ! Much love ~M~
0 -
I agree, we are going through the ups and downs. I have kept a sort of diary, and I know that in the last months, my mood seems to be more down than up. Even though I feel ok physically, my brain is just trying to scan through my whole life. What I did right, what I would change, even stupid things from years ago. Shit life this cancer life
0 -
I want to say Hi to all you lovely ladies! Tonight I'll try to catch up on reading. Even if I don't have time to post I am praying for all of us every day. We sold the house and we are rushing now to buy a condo, so when we move to be straight to the new place. The market is really crazy in Columbus, so I am not sure. If not , it will be moving from the house to the storidge and than to the new place. Only thinking about this makes me dizzy. A lot of hugs and love from me. Elena
0 -
Good afternoon ladiesI ripped a page from Maes energy book for this trip!
True no one knows how we feel. Everyone wants to walk and shop truth be told I blame a lot on my mom, she’s 85 I guess I act like an 85 year old.
Divine this is my place my group of ladies to vent to. Sometimes I read and don’t respond to everyone especially while traveling but I love and care for you all.
Morocco is mountainous which means steps everywhere and I’m hauling it up and down. Finally my mom said no more I won’t go out for dinner bring me something back. Thank God! We sat on the balcony and ate fruit and watched the sun set.
Lynne I hope you get your car or bike ride. Socializing gives me energy as long as the people are good.
Minnie my brother said he didn’t think we could do Spain bc we’d have to leave the car on Morocco so I’d be sitting on the side of the road somewhere in Spain. Sometimes my husband gets it and sometimes he’s busy solving the problems of the world. I usually give him a look and ask him if he’s done yet. He’s tired of being everybody’s everything. It’s about time he’s 68.
Micmel I reduced my ibrance to 100 and got a bad cold since I arrived so I’m not on ibrance at all. I’m taking a round of penicillin.
My hip and back are reminders of what’s going on inside but I’m really enjoying the tour.
Keetmom you will enjoy CO I’ve never been but the pictures I’ve seen are gorgeous.
Holmes you are right but our fullest isn’t equal to theirs anymore. Kind of tourquoise about it sad and envious.
0 -
Divine-You said it so well. We are all here for each other. I know I am. I think and pray for all of us daily.
Tanya-Lovely pictures of you and your Mom. I hope your hip and back aren't too painful. I am glad you are having a good time. I did get to go on the bike on Saturday. Just a short ride though, because I was getting dizzy. Sunday, we were suppose to ride our bikes with friends. I wasn't up for it. We took the convertible to our friends' house instead. We had a nice visit. We try to get together at least once a month. Next weekend, we are going to try to take that bike ride together.
Blueshine-Glad to see you back on here. I hope you find a condo you like, before you have to move out of the house. The market is crazy here too. There is not much for sale here, so when something goes up, they bid higher than the asking price in order to get it. It took my sister 3 overbids on condos, before she finally got one. Good luck!
holmes-You're right. I know that they are just trying to make us feel better, but sometimes, they have to realize that we are just not up for it. I've lived more of my life in these past 6 years at stage 4, than I'vew had my other 50 years. He's always booking vacations, and short trips. I've enjoyed them all.
Minnie-I do the same thing. Look back on what I did wrong, and how I would do it differently. Then I realize, I would not be the same person I am today. My life would be different. I think there is a reason my life turned out the way it has. I get down when I'm alone (which is daily now that the kids moved out). This week will be hard, since it's my post chemo (hell) week. I stay home the entire week, because of all my running to the bathroom. Tonight though, we are having a family dinner with the 3 kids and 2 grandkids (one is at cub scout camp), so that will be good. The grands always cheer me up.
Another beautiful day here. I'm going to try to get outside, once the dizziness goes away.
Have a wonderful day, all of you!
Lynne
0 -
Hi ladies. As per usual lots to catch up on hehe.
I read with interest y'all's comments on husband related facts. It's very insightful to read about dynamics that are usually kept hushed. Makes you think and I can definitely relate. Cancer definitely tests relationships and bundaries. Kudos for being brave and sharing.
Today was one of those days for us. Took Leslie to genetic consult and I knew having to rehash family health history would be painful. Its the first time I've seen her cry in front of a doctor. Wish I could do more than comforting her in the moment. She needs a fucking cure and she needs it now. Afterward we went furniture shopping and she relaxed a bit. We bought our first house right before she was diagnosed and we are almost ready to move in. The most important thing we are missing is AC. She is a Texan woman after all and there is no way she'd set foot in a house without it.
I appreciate reading about your lives. I might not comment on them often but it means a lot for everyone to feel the comradery in the hailstorm.
Daniel
0 -
Tanya, enjoy Morocco. Wouldn't be easy to visit me, too many miles from the nearest port. I do have Moroccan friends, and it is quite a trip for them.
Lynne, I know you are right. Our experiences make us who we are.
Love to eberyon
0 -
Daniel~I can relate to Leslie. AC is a must. There will be no resting for her without It. She is so lucky to have a loving husband like you. My DH tries all he can to comfort me. But the fear we have inside creates its own wall, we hide behind it. I don’t want to leave my DH behind. I love him more than anything In my world. Just-be her rock just as you have been doing. You’re a beautiful family! So good to see you. We all want that Effin cure for sure ! Hugs to you all!
Hi Minnie! Still giggling at your adorable pic you chose for your avatar
Tanya. Glad you’re resting!
I literally slept all day. Week off ibrance for me as well.
Lynne, I so agree we are each other’s support. My second family for sure.
Blueshine~ congrats on the home! Along with Daniel. Congrats on the new home. Great to see you here Blueshine. Busy lives!
Not feeling strong today. But then when do I?
Love to all!
~M~0 -
My DH and I spent a few days in the White Mountains, and I am once again behind. There is no way that I will catch up on this thread, so if I don't address you here, it is not intentional.
Gracie, I have been thinking of you all day, but I had no internet in the mountains. Even my phone did not get a reliable signal. Did you have your first infusion of Abraxane today? How are you feeling? Did the nurses tell you what to expect for SEs and when they are likely to begin? Were you given medication to counteract some of the SEs? I hope things went smoothly and you are feeling okay.
Mae, I am not sure how I would react to a singing surgeon. I did chuckle at the song choice of the surgeon in the linked article. It was so appropriate!
Lynne, Are you able to eat during hell week? Do you have to stick to certain foods that are gentle to your system? Do other foods make things worse? I hope your week isn't too bad this time.
Tanya, Your pictures are beautiful, as always. You have a very tall cousin in Washington, DC. It appears that your mom did not inherit those genes. You travel to some beautiful places. I am sure that I will never see Morocco, so it is a real treat to see your photos. I hope the antibiotic is doing its job so you feel better soon.
Holmes, it is nice to hear from you. How are you doing? I don't remember hearing about your dh's kidney issue. What happened? How long ago was that? Is he okay?
Blueshine, It is wonderful that your house sold so quickly. I hope you find a condo soon. I don't envy you for the packing and unpacking you have ahead of you. How long were you in your current home?
Divine, We do all have ups and downs. I try to appreciate the good times, but sometimes it is easy to take them for granted. Luckily, for me anyway, there are many more good times than bad. At least it feels that way.
Daniel, No AC? Whoa, I would have been one cranky woman if I had gone through last week's heat wave with no AC.
Micmel, I hope feel better tomorrow so you can enjoy the day.
Minnie, I have a journal that I started when I was diagnosed three years ago. I wrote in it often during the first several months, but I don't make updates often lately. I did notice that the content and purpose seemed to shift over time. It started as a place to document my feelings and fears about MBC, but it morphed over time. After a while I started entering passages that were really thoughts for and about my DH. I wanted to give him a written account of my feelings for him, things I remember most about our lives together, concerns I have about his future when I am gone, etc. I also started writing more poems, but I already showed most of them to him as I mention a while ago. Writing has always helped me work through my feelings.
Hugs and prayers from, Lynne
0 -
50’s, I thought the singing was bizarre at first but I loved it anyway. Later, I found out that the surgeon also works for st. Jude and sings to children to calm them, at that moment I loved him (like a grampa), and I totally appreciated the non clinical atmosphere.
Tanya, yay for tapping into the energy backs for travel, looks like lots of fun 😀
Daniel, we know there’s no magic words and we don’t expect our husbands or friends to fix any of this. Honestly, I tend to downplay anger, guilt,fear, etc, not because DH wouldn’t understand but because cancer has really messed up our plans, it’s a total bummer and I hate that treatment has become a leash, placing restrictions on us both. The fact that you would even join this site for info and understanding tells me your a keeper, best to you and Leslie.
0 -
50's just reading through. Yes first Abraxane is done. They said don't use the Zofran unless I needed it, but am thinking I'm going to take one as an attempt to stay ahead of the nausea. They didn't tell me anything else at all. So I'm kind of wondering in the dark with this one, hoping someone else will chime in. Took a stool softener last night and will probably take another tonight just in cade
0 -
Hello All, been gone the last few days helping Daughter move into her newly purchased home that was built about 100 years ago. Should have just taken a match and gasoline and saved us all days of work and trouble! It's been a rental for years and years and there is all sorts of left over mess and neglect and bad repairs. Nothing is straight, level, square or plumb. My mother came and we worked like mad for two days scrubbing everything, then Hub , Daughter and I spent another three days hauling mess out, hauling her stuff in and getting everything set up. The yard was 4 feet deep in thistle and burr and weeds and wasps. But she is mostly in, mostly settled. A few things to do, like jack the house up and pour a foundation under it, take the top floor off and set box trusses up for headroom, and install a septic tank - you know - little things. But that all can happen later.
July 5 of 2017 I was starting radiation treatments. July 5 of this year I was moving my daughter into her own home. Life is weird.
What I can't believe is how tired I am. I used to have energy. What the hell. All I want to do right now is go to bed. But thought I would stop in say hi and give my Micmel a big old hug. Time for beauty sleep ha ha, that's funny!
0 -
Runor, wow you have been crazy busy! I’m sure your daughter will love her new home when it’s done. Sounds like you need a few days now to rest!
0 -
Things went well yesterday for my first Abraxane. My wbc’s were way up...twice over what high is, over 20!!!! I’ve never had that happen before. Don’t know what’s up with that! Got about two hours sleep last night and am wide awake. Very slight nausea but I took a second zofran last night around 8 and I don’t want to take anymore unless I have two. Horrible stomach cramps already like I really need to go but can’t. Hate that!!!
Tanya, you send the greatest pictures! It’s like getting to experience a place I would never be able to go! Thank you for sharing with us!
Daniel, I lost my husband Tom six years ago. He was the love of my life. He was also my rock. So now I’m doing this stage four journey without him. You are such a blessing to your wife. Moreso probably than you will ever realize. If I could ever give you any advice, it would just be to be there for her. Love her through the good and bad, and tell her out loud how you feel about her. Often. We, as women, lose so much of ourselves to this disease that we get to the place where we can’t find that 18 or 24 or 35! Year old again. That’s when it’s I up to our loved ones to keep reminding up, to help keep picking up back Up and putting us back on the path that is nearer to the original. You, sound like a keeper
0 -
use Murilax everyday Gracie! Don’t wait. It can get really bad with all the pre meds they give you. I use Reglan instead of zofran. Seemed less harsh on my stomach. The first two days are the roughest. Just rest and lots of fluids. Please just get the murilax. Makes a world of difference!!
Waving hi to you sweet Runor. You’re kicking some moving a**!! Lucky daughters we have. Life is tough for sure. What a difference a year can make. Much love to all!
Mae~ Glad you’re safely back from the cabin! Sounds beautiful! Maes version of naked and afraid! All those animals walking around. At least you know what is around you! You have proof! Very cool animal pics.
Tanya~ such beautiful sights. I don’t think I’ve ever seen a Mediterranean Sea sigh. That was pretty darn cool.... thank you !
Much love ~M~
0 -
Micmel, I remembered you told me that and do have a bottle on hand. Will use some today. Thanks for the reminder. Hugs!!!
0 -
Gracie, glad everything went well for your infusion! Hope your side effects are minimal. I think it’s a good idea to stay ahead of the nausea. Tanya your pictures are beautiful! Love seeing new places! Had my Xgeva shot on Thursday and had the worst reaction that I’ve ever had in 3 years. Such horrible pain everywhere and felt extremely weak. Didn’t start to feel better until yesterday. Thank goodness I only get them every 3 months. The nurse that usually gives it to me wasn’t there and I feel like the other nurse didn’t warm it up like Nicole does and she also injected it very quickly. I told my husband right after I got it that I had a bad feeling that I would have a reaction. My fault for not speaking up ... learned my lesson after suffering for 3 days.0
-
Oh gosh, Lynwood! That sounds horrible. I had s bad reaction with the very first one, ans the nurse Gabe it quickly...then I felt like I had the flu for three days!!! Those reactions are real! Glad you are feeling a little better
0 -
Lynnwood~honey. Next time a week before your next shot, start taking Claritin, it will help with the bone pain. And problems. Also Tylenol. It helps me. I never have problems since my first time, when I had to learn the hard way. Writing in pain I'm sooooo sorry you had to go through that. I haven't had an problem since I started taking Claritin. I also took it with nulasta. Terrible Bone pain. Takes you right down. Agony! I feel for you so much dear friend. Soft gentle hug. Also drink drink drink water. Filter out that system. Much love friend. ~M~
Gracie~ take the murilax now. Don't wait till you have an issue like I did. I just had it with one meal a day like in Gatorade. Once a day. And do not forget. Those meds will bind you like cement. I speak from some severe awful experience from it. The stool softeners do not work alone, actually for me they never did anything. Just stomach aches. Never for the aches with murilax because it's more natural. Doesn't stimulate or over stimulate you're colon, which could cause discomfort and swelling for sure. Don't want you to have any problems. Love you gf! ~M~
0 -
So I went to see a pain management doctor yesterday. Need guidance on how to handle my pain, some joint, some muscle and occasional bone, plus this pain from the chronic tendinitis in my foot. I got a little lecture about using Tramadol for " so many years" and was told that if I went off of it I would probably have some withdraw symptoms. When I began taking it, it was not classified as a narcotic but now it is. At this point in my life, I am more afraid of pain then I am of becoming hooked on Tramadol. The plan for now is some trigger point injections in my back for the muscle pain. She feels some of the pain in my knee and foot is nerve related and ordered Gabapentin for nerve pain. I am titrating up slowly on it due to my concern of not wanting to feel drugged. Getting a trigger point injection tomorrow, I have had them in the past and they have been helpful . Have an appointment with an orthopedic doctor next week to find out what's going on with my knee. I have cancer in my femur and tibia and fibula, the2 bones in your lower leg. The X-ray does not show cancer there, but neither did the first X-ray of my arm which is filled with cancer. I'm sure this will need an MRI to find out what's going on. HATE all of these appointments and definitely hate having to explain my pain....I know doctors are cautious due to the opioid crisis but cancer should be enough of a diagnosis to get pain relief. Micmel, thanks for the advice about Claritin, I do take it every day because I have 3 cats and I am allergic, but I didn't know about drinking a lot of water...will definitely be doing that next time.
0 -
I hate all those appointments too sweetheart. I am right there with you my friend!
Hope everyone is okgood today. Some haven’t been around. MJH....thinking of Magda... a lot. Grannax. Hope all is well...Elle.....Hoping all is well!
~M~
0 -
Lynnwood-I agree. We are Stage 4, not worried about being addicted to pain killers, we just want the pain to stop. They should look who they are talking to. I hope the shots and Gabapentin work. I've been on Gabapentin for 13 years. I was orginally taking it for hot flashes (due to instant menopause, when I had a complete hysterectomy, ovaries too, at 43). I started weaning myself off of them, and the oncologist said that it was probably helping with pain, so I still take 3 in the morning and 3 at night.
Gracie-glad your first treatment went well. I hope the side effects stop quickly.
Lynne-I eat only a little during "hell week". For example, today so far, I've had water, gatorade, a banana, and a yogurt, and it's 1pm. I probably will have an instant breakfast for dinner. I usually lose at least 5 lbs this week. My mouth has thrush (from the 6 days of steroids) and sores, so I have to avoid lots of foods. By the end of the week I will be able to eat again, but won't taste much until next week. I am dizzier than normal this time around. I'm really hoping that gets better quick. I'm home alone now, since the kids moved out. My mother (who's 80) said I should get one of those panic buttons (I've fallen and can't get up). I said I'm not there yet!
runor-Wow! You've got a lot of energy! I wish I had half that much! Congrats to your daughter and her new home!
Ok, I'm really ticked off. Last Thurs I had chemo, and I asked the nurse if they were doing tumor markers, and she said yes. I called the office for the results, today, and they said they were not drawn. Last time, the drew the wrong one! My tumor markers have been climbing quickly, and the last one was done a month ago?! The girl said that she would let my oncologist know, and maybe I could come in this week. I said that I would not be coming in this week for a blood draw. I can't even stand up for too long, and I'm running the bathroom all week. This is my only week off from that place. I told her they could draw them next Fri, when I see the oncologist. I am having my scans next Wed (a month early), and we'll know if I need to change treatments, but it would have been nice to know if they were still going up!! I'm am so mad!
Another hot day here! Thank God for a/c (Daniel!)!
Wishing all a beautiful day!
Lynne
0 -
Am. Hitting. That. Wall! Soooo tired
0 -
Four of my best gal pals and I went camping in Northern Maine for the 4th with our families. It was magical! Each family stayed in a lean-to like this facing the beautiful lake. Lots of hiking, swimming, canoeing, fishing. Communal meals and camp fires at night. My grandson had the time of his life! I am third from the right.0 -
Hi everyone!
Back from an amazing camping trip to Baxter State Park! Been cleaning up and getting grandson off to camp this week. Have two lunch/coffee dates with girlfriends, then play with DH on Thursday night, then off on Saturday for overnight with DD for a concert!
Vegetable garden giving us fresh lettuce/arugula now; all else is coming along albeit late.Love July here as I think it's the best month for flowers!
Bought the "body shaper" for under my dress that I am wearing to the fancy NYC wedding on the 21st. Trying it on was completely contortionistic! (is that even a word?) If there were a video of it, you all would forget all about MBC for at least 20 minutes. it parallels foot binding, I mean there ought to be a law....Holy smokes!!
Thinking of those with chemo blahs. Lynne(Man), hope its a moderate 'hell week" for you. If they drew any "serum" tubes at your last visit, the tumor markers can be added on to it if there is enough quantity and it's within a week. You might call the office and ask, unless you are afraid you will give them a major piece of your mind! I would be ripped! We all have the same damn labs about every month-they should be able to get it right! Gracie-hope the Abraxane is not beating you up too much. Not familiar with the SEs with that, but I know it could be somewhat of a challenge. Sounds like fatigue is rearing it's ugly head.
Tanya-always enjoy your family photos. Morocco sounds so exotic to me! I enjoyed swimming in "the Med" while in Spain!
Lynne(50's) how the Tamoxifen going? Thinking of you!
I am still feeling great on the Xeloda. Tumor markers went down by one half again this month! Yahoo! Needing to nap after several days of activity, but that is just fine with me! Feeling very lucky right now.
Micmel, Blueshine, Lynnwood, Mae, Magda, Grannax, Holmes, BigHome, Keetmom, Divine, Runor, Daniel, and all of my MBC sisters, My thoughts are with you constantly and I am so grateful to have you.....Love, Mary Jane
0 -
Gracie, I hope you are getting some rest. Chemo is a shock to our bodies, and yours will do what it needs to do to adjust, recover, and rebuild. Don’t fight the fatigue right now. Take it as a sign that you need to take it easy for a day or two. I hope you feel better and stronger soon. I am praying that Abraxane is obliterating those nasty cancer cells.
Hello to everyone else. I am in the White Mountains again with iffy cell service. I will post when I can.
Hugs and prayers from, Lynne
0 -
I have gotta tell you ladies. I am simply amazed Just at your abilities to always be on the go. I never have energy to barely do one thing day, and run to my Bed. I am constantly exhausted and I sleep all day long! I do know I do not have any appetite at all. That has to be my issue. I was considering seeing nutritionalist to see what I can do about perhaps deal with the lacking vitamins I need. I listen to all you do, and I yawn and think, man something's gotta give! Someone can only sleep so much. It's ridiculous the shit we are forced to endure and live with just to literally stay alive. Everyday I feel like shit. Nothing makes me excited anymore. I can't really do anything for long periods of time because of where my mets are located. I hate going out, but at the same time hate staying in. It's a mental torture every single day, Somedays I just don't know how I haven't lost what little Marbles I have left . One just rolled away now. I love my DH more than anything and this is no life for him
Much love to all. Hope everyone calms down from the things that posses them Off today. Mine was the trash bill. Seriously $70.? For what ? Ugh I hate money.
Have a good evening ladies ! ~M~
0
