My Husband, My Life, My Love, My Family, My Cancer
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Micmel - please keep calling until you get her on the phone. I sent you a PM. I’m worried, friend... xo
Minnie - thank you
I know both of my girls have plans to move away after college. I get a couple more years with both of them (God willing I’m still around) as the older one is starting her masters program locally and my youngest plans to go to college that’s just an hour away. I’m so proud of their ability to be independent and they’ve both already proven to be financially mature, but I’m sad at the thought of not being able to hug them at will!As for the nerve pain, I haven’t experienced that, but it sounds awful! Are you taking gabapentin by any chance? It’s my understanding that that helps with nerve pain better than anything else. Please call your oncologist.
Hope you both (and all of our other sisters) have a good start to a great day... x
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thank you sweet Minnie. I think your nerve pain sounds like sciatica. How are your shoes? Good support. You're quite an active woman. Bad support I learned =can equal out of whack body parts. In the back and legs.
Shelia~ wrapping your beautiful message and you in a big loving hug. Thank you! I am concerned. For sure. I agree I never feel badly in the oncs office. I wonder why that is.. but you're correct. Boy are you correct ! I have your number in My phone. I love all of the personal contacts made.
Somedays, if it wasn't for Chelle, Gracie or my sweet Dianarose, someone come through. Keetmom and I also texted frequently and her death along with Pattys have left a hole inside of me.I just have to let go and remember what beauty each woman held within themselves. I loved each of them so much, in such a short time when you really think about it!
You ladies help me breathe you help me see I am not alone. Although we may feel that way a lot. I'm saying thank you for all you do. Much love to you beauties!
Tanya,Muddling,50's,lynne(Man),Gracie,Elle on wheels, minnie,Grannax. Who I have not seen lately. Runor...Divine....Sandybeaches....Mae my sweet.... masons.....JKL.......Miss Bianca... footprints...GP...... Egads... and anyone else my lame brain will remember. I'll be back!
Much love ~M~
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OMG, y’all I found this thread and I’ve laughed so hard! I started on page 1 and I’m now in like 147 when it hit me that you guys could probably use some humor too. It’s called “you know you’re a cancer patient when”. Enjoy!
https://community.breastcancer.org/forum/31/topics/755825?page=148
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you’re a trip. Lol. We all need that laughter.
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Sheilamarie, you are so right. Funny stories please
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Micmel- that’s great that your nurse thinks so highly of you!!! the bra looked great!! sorry you couldn’t enjoy your party because of your sinus infection. i know what you mean about the “jealous” feeling towards the stage 1-3 cancer patients. i find myself feeling that way sometimes. we have to live our lives for what they are and for the time we have left. i hope your able to get your medicine to the level that will benefit you
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well I have found hell! I started the ac combo oct 15 after failing abraxane. The first few days after I was ahhh, just ok. I had felt like i had a major stomach surgery for some reason. It just felt like a lot going on inside.
I work for myself so went to work here and there a few days. Sat around all weekend at our cabin. Passed on a party bc I knew I didn't want to be around germs. Come Monday morning I was done. I couldn't wake up and when I did i threw up and laid on the floor. I had the worst sore throat ever. Tuesday went to the doctor for a pic line dressing change and flush. Off to the hospital they sent me.
My white blood cell count was 100 and the other white count number didn't even register. Those were the baby blood cells. I did get two blood and one platelet transfusion. I was in the hospital from tues to Sunday night, which was my birthday.
The nurses were the best! They hung. Birthday sign and had gotten me presents and a cake. I said I'd like to say I won't be back but I probably will. The doctor and nurses all came in and sang happy birthday to me, it was funny
Last Monday, lifeless and laying on a kitchen floor I said I don't know if I can keep going through this, it's hell. I just can't do it. Today I'm saying ok I can do this, I need to dothis, I knew this could happen.
It's sad all the emotional and physical Ups and downs of cancer. It's hard, it beats you down and then down some more. At the end of the day when I see my daughter smile and text my son I love you every night from far away, I know it's worth the fight. It may not be the best days but damn it I'm here and I'm thankful.
Keep fighting girls, don't let cancer win. It can take us down but don't let it take us over.
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Wow, skits, what a terrible way to start the AC combo! I'd probably doubt my ability to go on under those circumstances, too; anyone would. Then we get back up, wipe our hands off, and keep on keeping on...It’s amazing what we can endure for our loved ones!
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Skitz~Been there next to you on the floor. That Ac chemo is rough rough stuff. I hated it. Four of the worst times of my life. Then onto 9 abraxane. So I feel the exact pain. It is tough. Tough as hell. Bends our faith and minds, shatters our emotions and. Instills fear in everyone around you, who loves you. I don’t think we would ever be able to give up. But the battle is real. I am sorry you had to go into the hospital. But Happy Birthday to you and I agree nurses really are fabulous for sure. Some nurses have touched my heart deeply. Wishing you better days and years ahead. Huge hugs since we are in hell, it helps to have some company ~M~ That would explain the constant heat problems and flashes!!!!!! Ugh!!!!
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Hello Shelia~ my sweet friend. I adore you and hope your day will be a good one. Hugs your beautiful children for me please and I’ll hug mine! Much love~M~
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Good morning, Micmel, love. Hope you’re feeling better today. I had my CT this morning so I’m just trying to be positive. So hard sometimes. Xo
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Skitzblitz- You did find hell and it is everything they say it is.....I had a very similar experience when receiving chemo for the Stage I BC. It also made me question if I could keep going. I had real feelings of impending doom. It passed as I began to improve, but man 'o man-hope not to go there again right off.
Best always, Mary Jane
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Shelia~i am in your pocket with you the whole way. Just hang on and get it done. That's all we can do. You're not alone sweetheart, no you're not...
Good morning MJH~ always good to see you. Always!! Looks cloudy here today, didn't really matter if it was sunny. I'll be napping anyway. Sinus Infection is a lingering PIA!!! Best to all.
Much love ~M
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Good Monday Morning!
Skitz, I felt the same on AC. My family referred to me as catatonic during that time. I also have some PTSD about being on AC chemo. Have you asked your onc about Neulasta? My blood counts were low going into AC from a previous treatment plus I’m anemic in general, and I think the only way I was able to stay on it was from the Neulasta forcing my body to make more blood quick (rough description of what it does). Plus it was nice to not have to go back to the doctor after infusions. On the plus side, if you sleep a lot AC chemo goes by quicker, lol. That’s one of the positives I came up with for feeling like a narcoleptic zombie.
Hugs to everyone
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skits. That sounds horrible. I hope you keep finding hope through your kids.
Where did your progression show up? I'm sure I've missed a post about that.
I've been kinda busy with grandkids birthdays. Both in October. Plus, Mommy was out of town two weekends in a row so I had some Granna time. It was a little too much for me this time but, thankfully, my DD was able to come over to rescue me. I just needed rest, so I'm OK.
So, on Friday I went to MO appt. During the exam she heard a heart murmur. Well, I'm 70 and have never had a heart murmur. Weird. Evidently not as weird as I thought. I did some reading and it does occur late in life. Possibly a build up of calcium in the valve. I go to see my PCP tomorrow, if she hears it, too, then she'll probably order an echocardiogram to see if I have aortic stenosis. It kinda spooked me because that's what my sister had. They had to replace her valve with a pigs valve. But, she had a murmur since birth so they had been watching it a long time.
LIFE just keeps on happening. Also, my PET is going to be in December, not November. This will be the definitive answer to if the new place in my liver is a met or not. Probably she'll do a MRI too.
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Got my scans back today and it’s a mixed bag. Bones look good, abdomen is clear Brain is clear and dural edema is decreased, breast tumors are stable, but skin mets are worse and lung nodules are up by an average of 2mm for the ones I knew where there and ‘a few other pulmonary nodules have similarly increased in size’ Way to be vague, but I guess it is the same if I have 1 or 12 as long as they aren’t causing problems.
On another note my onc told me about a trial for BC that takes your tumor tissue and tests what specific proteins it expresses and then makes your immune system go at it. You are given your specific vaccine and are on an Immunotherapy infusion. It’s a phase I study...can’t remember the name, but I can ask if anyone is interested. A big downside, other than being phase I, is that you might have to be off any treatments till they can play with your tumor enough to figure it out. Onc told me it could be 12 weeks.
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Two years ago today, I found the lump and life as I knew it was over but life itself wasn’t over. I’m feeling pretty good all this time later and I just wanted to remind everyone to enjoy everything you can, do whatever you want and are able to and don’t settle for so-so.
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Mae, Thank you for the reminder. Sometimes it is easy to forget how important it is to enjoy life. If we don’t do that, we miss out on so much. You have been a good example to all of us. I always enjoy reading about your travels and adventures and seeing pictures of the delicious meals you prepare. You seem determined to plow ahead no matter what is thrown in front of you. So-so is not an option for you.
Parry, It sounds like you have a lot to think about. Twelve weeks sounds like a long time. If you don’t enroll in the clinical trial, what other treatment options is your onc considering. What are his feelings about delaying treatment while you await results of their findings about your tumor’s characteristics?
Grannax, A heart murmur? Life is full of surprises. Please let us know what your PCP says tomorrow.
Skitz, Good heavens you have had a rough time. I am glad you are home now. Will your medical team be able to do anything to prevent a recurrence of that recent experience?
Hugs and prayers to all from, Lynne
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Grannax~Alwaya good to see you. I feel like the mother hen always worrying. But it's because I care. I'm on my week meds break, so I'm hoping the rest of this crap will get out of my system. My DH had to leave this morning again, for work until Friday but I hate him being gone ever from my side. He saved me this weekend. Just as he's saved me before. He is such a loving kind man. I cherish every second with him. Every breath to love him. Welcome back glad you had some good Gramma time!
Parry~It is always difficult to understand those results. I'm about sick of tests and I am stepping up end of November for my scans. I sure hope exhaustion and constant wanting to sleep. Extreme fatigue. Doesn’t mean progression.....But everytimne I mention it to my onc. He shakes his head. And says. Yup. 125 mg. Fatigue number one side effect! Yuck!!!
Mae~ Two years 🍾🍾here is to decades more!! I know you're a special person a strong as well ! Much love my friend ~M~
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parry- I totally see how you could feel PTSD about ac combo. I think I’m having those feelings already and my doctor has me down for 6 rounds if all goes well. 6, omg!
I did get neulesta the day after chemo and then he seemed like he doesn’t like giving it any more. I understand he wants the body to do the work on its own but that is hell on my body. My doctor left for vacation while i was in the hospital and the one filling in for him was awesome. He did finally give me two shots which helped of course boost me up to get out.
I would love the trial number for the one your thinking about. I’d love to do one of those. I so wanted to try the polio vaccine but then it was filled.
Grannax- I had the bad liver progression nothing seems to be helping. I’m hoping to shrink these babies down and check into the y90.
Sheila - praying for some good news for you with your scan.
Mae- great advice, a pick me up!
Micmel and 50s - thanks for the note! I think we have all been in our own form of hell with cancer and we never forget it. It seems to make the good days easier when u remember the bad ones.
Sarah
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Shelia, thanks for the link! I’ve been reading it all day I did the dentist thing in June, haha.
Grannax, at least you found it and can either do something or monitor it. One kind of good thing about going through the works with cancer is you get to find out all the other crap that’s wrong with you. Beats having it sneak up on you and not be able to work with it. I hope this doesn’t hinder you at all.
Illimae, Two Years 👍 I know a lot of people (normal people) don’t thunk much of 2 years, but here I think we all understand the value of time a little different. I’m so glad you are here. I hit two years a few months ago and still feel like it was yesterday. The emotions and reality are still settling. Your positive attitude and outlook inspire me. I’m taking your advice and enjoying some Doritos today!
50’s, I don’t think I will do this trial. Not yet anyways. My onc doesn’t like the timeline for waiting (she is also not sure if I can do Tx while they play in the lab) & wants to try to get my insurance to approve a parp inhibitor to add to my Opdivo & Avastin. Its not approved for BC, but it is approved for Ovarian. My first time around with BC I did a study that used a PARP inhibitor and did great on it so we are hoping this is the key. Other than this I know there is a standard of care chemo my doctor has lined up, but I can’t remember what it was called (talked about it almost 6mo ago). Plus there are many I’ve seen on BCO, but I’m not sure if they only apply to hormone + BC. The important thing is I’m not out of options yet!
Micmel, You are so right. I still can’t even tell you exactly what’s going on in my brain. I understand when my onc explains, but it disappears by the time I’m home I feel like. Keep battling that fatigue! I know it sucks...I’d send you some of my energy if I could take care and don’t worry if you feel sleepy and want to nap after waking up. Our bodies aren’t meant to take this stuff we are putting in it and sleep is one way it heals and works alongside the treatments.
I also found out my insurance approved massages at my treatment center. My doctor put in a order for it due the SE’s from Avastin and whatddya know it got approved! My fiancé can give his hands a rest. Anyways, I found out more and more insurance is approving these ‘alternative therapies’ so it doesn’t hurt to ask your doctor who can maybe put in an order for it.0 -
Parry~I am trying to back off all NON essential medicines...stopped amytriptiline, no more methadone at night. So I’m going to figure out somehow what is causing the added..Fatigue and eliminate the things I don’t have to absolutely have to have. I’m sick of being a zombie.... I have to try something !! Much love~M~
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Thank you skitz... I find out tomorrow. Fingers crossed.
Mae - so happy to know you’re doing so well 2 years in! Keep on keeping on, friend
Parry - awesome news about the massages. I’ll definitely have to look into those. Glad you are enjoying the link.it gave me lots of laughs!
Y’all - I’m starting to feel sick about tomorrow and getting CT results. Please please please send up good vibes or prayers for me.
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Shelia~I am in your pocket.... I am thinking of you and hoping you know how much we care. Hang on to us good and tight. You’re so loved ! ~M~
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Sheila, I am lifting you up in prayer and hoping that you receive good news. You will be on my mind tomorrow. You are not alone.
Hugs and prayers from, Lynne
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https://legacy.newsok.com/obituaries/oklahoman/obituary.aspx?n=helen-broda&pid=190591558
Magda’s Obit. We love you dear friend. Miss you everyday and always looking for your name posting. Rest sweet friend.
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Sheila, sending prayers for good scan results! The waiting is the worst! Please let us know how you make out.
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Sheila, I’m joining the gang in your pocket 😀 I’ll try but I can’t promise to be quiet as I crunch some of Parrynds Doritos, lol
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Y’all ready?? Hop on in. I definitely need y’all... I’m so scared that I can barely move and think I’m going to vomit. I’m more scared today than I was going for biopsy results..
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Micmel, thank you for sharing Magda’s obit. I did not know her but I know many of you have expressed your love for her. Reading her obit gives a glimps of her life and the lives that she touched. She is now with her sweet husband
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