Beth Kulow
@ehgkulow
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Just an average girl trying to survive with Mbc
Joined May 2014
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Horrible news yesterday, grand niece in Texas got covid. She went into cardiac arrest and is now on ventilator. She turns 1 on Jan 1st. I’m heartbroken and can only pray she comes out of this.
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We’ve been in a bit of shock since seeing my Onc. CT scan far worse than I could ever imagine, altho the pain issues are now understandable. After 16 yrs(and w w/mets), I have 1 - 3 months left. I’m numb.
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10/22/07 I found out I had cancer. In the past 16 yrs, I have endured more injections, pills, infusions, and transfusions, then I could possibly count. I have been lucky to have endured this long with this horrific disease. And yet, have been so damaged by it all. 🧵
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15 yrs ago today I heard the words “you have cancer”. I sometimes wonder what my life would be like, but I’m mostly grateful for the life I do have. It’s hard, but so worth it. For now anyway.
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CT showed 2 new lesions on liver. So I’m kicked off the Trial. Off to see my Onc this morning to find out what’s next.
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Thanks to everyone for the well wishes and prayers/positive affirmations. Cecilia is off the respirator, on oxygen and getting better!
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@CareyTerry
A child’s life is in jeopardy, now is not the time to see if we can find someone to blame it on. Period.
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Good visit with Onc today. Scan looked ok to him. Yes, I have cancer active in several places, but holding steady. Bones only. Staying the course, no new treatment. Today is a good day.
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I am surrounded by love. In the last few weeks, I realize that I have no last minute apologies to make. My love for them has always been know. To love and be loved in return is the true purpose of life, and and in that respect I am at peace.
But I’m still pissed off at dying.
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Sitting in the infusion room scrolling through dessert recipes. Why do I torture myself like this?
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Next stop on the Magical Cancer Tour is 1st transfusion 🩸🩸🙄 This was definitely NOT on my bucket list
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After 11 yrs metastatic, I crossed another bridge. I’ve had to resort to narcotic pain mgmt. I feel like I’ve lost another piece of my soul.
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Had the most wonderful day yesterday, spending time with daughter & family. So much love and laughter. Totally exhausted today, totally worth it.
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My sister is gone, my heart is broken. Fuck you Covid and everyone who won’t wear a mask
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Cancer is a thief, it will steal your future. Try not to let it steal today. Do something to make yourself happy, no matter how small
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“What set Libby apart from many of us who are terminal was her willingness to be dark, blunt, and very very descriptive of the process.”
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11 hrs at the hospital today for 2 units of whole blood and a bag of platelets so I can have paracentesis tomorrow morning. Hopefully will help me feel good for a week or two 🤞
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Finally got my MRI results. Brain is fine (*big sigh) and neck needs a visit to oncology radiology to see if it needs to be addressed to help with the headaches. Will know more Tuesday, but I do feel some relief
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Spent the night in the hospital waiting for an MRI on my gallbladder. Unfortunately, I see surgery in my very near future 😭
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I’ve reached the point where there are no more treatments, no glimmers of hope. The only thing left is to try to remain comfortable and say goodbye to all those I love. That’s the worst part of this all, but also part of the best. Everyone that I love has reached/come to visit.
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In a 1 month period, I have appts with my Oncologist, Podiatrist, Gynecologist, Radiation Oncology (5 times), and a Neurologist. Trying to stay alive is a full-time job.
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As I sit here, starting my 9th line of treatment for MBC, pouring more poison into my veins, I must listen to the bell ringing and cheers of someone who has completed treatment.
@AdventHealthCFL
don’t you think it’s time to get rid of this ridiculous ritual 1/2
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My sister was put on a ventilator yesterday. She is only 62 and in very good health, one of the strongest persons I have ever known. I know this is the best thing for her right now, but I am gutted
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Heading out to start my next line of treatment. Number 10 or 11, does it even matter? Trodelvy, please be good to me.
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Another day of love. Daughter w/her 2 youngest. Two oldest tomorrow
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Warm blanket, fuzzy socks and 2 units of blood. Saturday not so fun day. Hope everyone is having a good day!
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I’ve endured poking & prodding, surgeries, rads and scans, glimmers of hope and crushing disappointment. I’ve forced myself to live with intolerable SEs because the alternative was death. It’s been a long 16 yrs, yet also the blink of an eye.
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My Bday is Tuesday, when I will have chemo. So tonight we celebrate! 1st course: king crab with mango purée
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Trying to find pain meds that don’t make me sick is an ongoing process. I’m exhausted. Up next, olanzapine 🤞🤞
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Sitting in the infusion room getting 2nd dose doxil. How do you do it? How do you say no more? I couldn’t do it, altho part of me wanted to.
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Today wasn’t quite what I had planned. After getting chemo, I walked through the corridor to the other end of the hospital and found my 56-year-old nephew who was undergoing testing for heart transplant. During the testing they found a mass on his stomach.
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@LucidWhim
I’m sad for us both that we met here, but so grateful for the love and support I’ve found here. ❤️❤️
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The strangest thing happened today, I turned 60. It happened rather fast. I’m very happy today and I will thankfully take every birthday I can get and never complain about getting old. I even made a cake because no matter what the day brings, life is better with cake 😊
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I don’t care if i know you, if you post good news on your cancer status I cheer w/you. If you post about the death of another person taken by cancer, I weep w/you
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Update on daughter’s MIL, aka my friend. Biopsy showed renal cancer mets to bone. Second surgery went well this morning to secure left femur. Brain MRI scheduled soon.
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Today is a good day. Got a pack of toilet paper from Costco and my tumor markers were down. A good day indeed 😊
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PET stable with some slight reduction of existing bone lesions and no new ones. Feeling lucky today
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When your husband makes you a little salad for lunch before chemo 🥰
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Feeling nervous as I begin a new treatment - how will it make me feel? Will I tolerate it well? How will it damage my poor body? Most importantly, how much time will it buy me??
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October is very triggering for many of us. I offer divert my eyes in stores at the useless displays of pink. Pink will not save me.
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Don’t think I’ll be getting treatment on Tuesday 😩
Just tested positive for the other C word. F me.
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Absolutely fabulous day, nephew and his family made us dinner. It was wonderful to see his children making their great grandmothers recipes. Love never dies ❤️
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To say I’m shocked is putting it mildly considering how I’ve been feeling. But I am so happy to read this!
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My anesthesiologist’s name today was Dr. Stoner. You can’t make this shit up.
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#4ForStageIV
diagnosed 10/22/07, mets 2/12. 12 diff meds, rads 3x, 12 PET, 13 MRI, 5 CT. Today is
#MetestaticBreastCancerDay
and I am at Oncs to have dose
#22
of
#Halaven
trying to stay alive
#StageIVNeedsMore
#DyingForACure
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So, airline attendant friend just worked her first week with the no mask rule in place. She has covid (no surprise). She’s vaccinated and boosted, suffering flu like symptoms. This shit ain’t over people.
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My mother turns 84 today. We had a party on Saturday for her, it was a wonderful day with my family 💞
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@barteeellis
No one can make that decision for you. But I’ve been doing it for 11 yrs mets, 15yrs total. 13 lines of treatment. Some days it’s so hard I wonder how much more I can take, but I persevere for the good days and hope for better treatments. Hugs 💜
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Another Tuesday,another treatment. It’s not chronic when it requires putting poison in your veins regularly, or swallowing pills that make you ill. You only go through such lengths because you are terminal. Period.
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Last appointment for this week, brain MRI. Not a good week, and chemo again on Tuesday. Not liking Gemzar so far.
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that causes pain to other patients? I don don’t begrudge anyone who can go through this and want to celebrate, but there is a time and place, and this is not the place. Not while others are still suffering. Not while others are still dying.
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PET results are in. Several small active mets on bony pelvis and R femur. Numerous scattered non active sites. I think it’s pretty much stable. I’ll get more info on Tuesday when I see Onc. Pretty happy 😊
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Does anyone else just feel better when they see a post where a Twitter friend is having a good day? We all go through so much it just makes me feel like a little of their happiness spills over to me💕
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Got some encouraging news this week, TMs went down for the third time since starting Trodelvy. Feeling hopeful ☺️
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My sister is showing signs of improvement, she’s still in ICU but we are hopeful
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FFS, there are several people in chemo room taking on phones like they are in their own homes. One guy’s phone keeps going off, loudly. People have no manners. Maybe I should take out my earplugs
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I’ve been put on steroids for 5 days. I’ve already apologized to my husband for what I might say. Scans on Monday😒
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PSA reminder: Be your own advocate! On the MRI table, ready to slide back into the beast, when I casually ask if he’s waiting to put the IV in later for the contrast. He says there’s no contrast ordered for this scan.
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Dear Universe,
Can you please give me and my friends a break? We are holding on by a thread and need you to lighten up a bit, please??
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Today my sister should have turned 63. She was the instigator, the first one in the water, the one you turned to. She had so much more life to live. I’ve loved her since the day I was born and will miss her until the day I die. 💔
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Don’t feel like I can breath. My sister was admitted to the hospital last night, she has covid19 and is not doing well😭
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I say, strange, I’ve never had one without it. He checks order, yep, contrast. Scheduling didn’t input it correct. He had to go ask if the radiologist could stay longer for a longer scan. Got the ok and proceeded. But, what if I hadn’t asked??
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I had a dream of Lori last night. We talked for a minute but she was leaving. The only thing I could remember when I woke up was Hope.
I really miss Lori 💔
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Just got the most wonderful care package from my dear friend in Italy. My sweet tooth will be well taken care of with 3 lbs of Almond Nougat!
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First meal in Florence after almost no sleep traveling. Early to bed tonight!
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I was vomiting so violently last night I broke a capillary on my face🥺. Now I look like I have a scratch under my eye. Can’t wait for someone to ask how I got it🤮🤮
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I celebrated Metastatic Breast Cancer Day by having my last radiation treatment (for now). Luckily, I celebrated being alive with a lovely lunch with little sister before this.
#fuckcancer
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How’s a girl expected to keep her weight down when her husband does this?
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I just put a new lightbulb in my lamp. Box claims it’ll last 13 yrs. Feels surreal that a lightbulb will outlast me.
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Cycle 3, push 6 of Halaven done. Neulasta attached to arm, already back home sitting on my back porch sipping coffee. Not looking forward to the next few day’s 🥺
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Dad is finally home. Heart is good, symptoms caused by bp being way too high. He’s just happy to be home, as are we.
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PET results in. Mets still contained to bones (whew), sacrum and right iliac (front and back) continue to be noteworthy, along with the right humoral neck. Had to look that one up. Doubt it’s new, just became notable.1/3
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Thinking of the beautiful people we’ve met here, the ones who are no longer here, and those still struggling to get through the day 💜💔💜
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