CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Just not right Jo.. Should be illegal to do that! Man..
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lucy- most of the time during the week I run alone but on the weekends I run 5 and 10 K's. Sometimes I just power walk. I have used mulch plastic to prevent weeds. Maybe I'll try it for new flower bed. Thanks for the suggestion
Twelvestrings- insurance companies definitely have the upper hand. I finish work early on Friday and I'm going to review more providers. The worst part is my insurance company still has not notified me that they did not renew the contract with my cancer center and my doctors. It sucks but I need to remain very healthy. I don't even have a primary physician now. Just have to keep focusing on the positive which is a challenge right now.
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Dorene, so sorry about the high OncotypeDX. It's a shock considering the rest of your profile--your tumor is the same stage as was mine (except mine was all invasive, no DCIS). So long as the guitar strap won't irritate your port, I suggest you find refuge in music. (Kept me sane during my recovery). I thought of you last week when I watched a PBS documentary about John Denver (who played primarily Guild 12s). Do you write, and if so, do you have GarageBand on your computer? Might be fun to collaborate.
Also, if your plastic braces (a clear Invisalign retainer?) aren't for straightening or stabilizing your upper teeth you might want to ask about a "Maryland bridge" (so called because it was developed at the U of MD dental school). A shallow groove is ground or etched into the lingual (tongue) side of the two adjacent teeth, and the false tooth attached between them, with a "wing" on either side epoxied in place into the corresponding groove. I've had one for a lower front incisor for 16 yrs. now.
Jo, there is a special place in H-E-double-hockey-sticks for health insurance companies. Grrrrr....
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well the rock garden looks awesome, my sister loves doing projects like that, me, not so!
So far sloan has been amazingly cooperative on the insurance side and no issues, sure hope it continues
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iris- so glad to hear you've had no insurance issues with Sloan.
Chisandy- I'm very disappointed with my updated list of providers available. There is no comparison. All I have to do is stay really healthy until the end of the year. In December, I will switch to a new plan which will cover Mount Sinai Medical Center or reputable Cancer Center. Whatever happens, I will find a way to make it work. I'm headed to New Orleans April 4th for an OT conference. I'm looking forward to 6 days away from insurance issues.
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Chisandy, That is exactly what I'm Doing! A Maryland bridge tomorrow. I still have not heard from oncologist for test results. They said that they have not received them from my surgeon. All I know is I'm an oncotype 30. I don't know if her2 test they do was positive or negative. I have been every type from equivocal to borderline positive to negative. My Insurance is causing delays on top of already having delays from borderline test results. I actually had 2 tumors in one side and that is where the dcis(precancerous?) was from. They dismiss it and don't say anything about it anymore. Now, it will be almost 2 months since surgery until I start chemo. I dont know if it matters or not. Port this Friday. Stiches yesterday for a hole surgery, but no big deal. . there's my crazy town rant. Selfishly whine compared to the wonderful people on this site.
I do LOVE music, I am starting to get some guitars back into my life! We had a house fire 5 years ago on Christmas and I lost 10. LIke a dope I stopped playing for first time since I was 9. I tried to write a few times but I just didn't do well but I am going to try again! I will totally check out that garage band App! Yea! Would LOVE to hear and learn some of your originals..I'll never stop playing again. The 12 string Ovation in the picture is the only one that made it out. And a 1959 Spanish guitar was at the repair shop ,Yay!
Sorry so chatty all.. nervous..
Dorene
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twelvestrings- please forgive me for being curious. Why wasn't your port put in during your surgery? You and chi Sandy are so talented when it comes to music. When you guys write about your music it's easy to see and feel the love you receive from your music. How sad for you to lose so many musical instruments in a fire. What a loss. Being borderline must be so frustrating. Being borderline will you get a 2nd opinion?
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jo,
I thank you for being curious! I couldn't help but read a lot of you posts . You are just awesome. Reading your post kept me upbeat and encouraged.
You right its frustrating. I officially got even more scared after this wait on oncotype.
It started as 2 tumors and biopsied er + 100% pr+ 7% her2 equivocal then they retested and it came back her 2 +2 borderline. Surgeon said she didn't want to wait anymore so off to surgery. Before that I had node biopsy negative (with huge hematoma after. person who did it was pretty rough)) but not a lot of tissue and my surgeon was questioning the negative. she's picky. In the meantime she had me have a pet scan because of the testing not having definitive answers. Pet scan ,all negative except for where they already knew where it was. No port during surgery (not sure but maybe testing conflicts?) I was trying to avoid radiation because of side effects. Music was my reason. this was important to me. she knew that .she warned me ahead of time about immediate pathology and I accepted the fact that when they sent out all nodes and tumors after surgery. , small chance it could be different.Nodes still negative but her2 came back negative. so I ended up with oncotype test.. Now my insurance is pending accepting paying for report but somehow she got the number 30 to me.She said 30 is Chemo but Oncologist has to talk to me. I have heard Nothing from my oncologist because the lab still has results and I don't know HOW my surgeon got this number. not happy about that. and wondering now it I have waited too long even though it was caught early.
I think I injected a bit more blabber and no real answer about the port!! I'm just plain scared.Today is the first day.. I stayed home and cried. didn't get dressed. But I just played some guitar, smacked myself around a bit and I'm going to get my tooth fixed today. Tomorrow port. ….. I think. Im called them right now. I freaking love life no matter what it hand ya. Its my life and I will love it no matter what. It doesn't mean its easy. Nobody said an awesome life is always easy. I just feel bad for my daughter and husband. they have to do this too. She only 16. I had her at a super healthy 43 years old. Just happened!
Again I'm sorry for unloading.. I thin I need to get my butt to a support group. I just felt very lucky to catch it early but Im finding out.. cancer is cancer.. just the word is dirty.
Im going tocheck out the garage band app that chiSandy said and get my butt out of boo hoo woe is me crap..
Big hug,
Dorene
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twelvestring, it is so much harder dealing with the unknown than the known, especially when it seems the answers should be there! Take some time for your boo hoo when you need to, the extended waiting phase you are in is the very hardest part. Do enjoy your 🎶 music.
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You are so right Beaverntx ,
Ahh music... I don't know if this is allowed but here is one of the beautiful piano and Symphony. Listen with me..
Peace,
Dorene
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I deleted some of my posts. I must listen more and whine less.
Here is a rock garden for Lucy55. It’s in my yard. I owned a stone yard and some of us came up with the “ waterless “ garden. I have a black thumb so this is perfect!
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Dorene ..it looks great 🌞
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Hello everyone. My surgeon who told me my oncotype score,(30) put port in Friday. The oncologist never called. Surgeon also told me that final her2 is negative. I value my surgeons opinion about this but I thought I would speak to oncologist about the whole test, etc. I call oncologist tomorrow morning, ( my surgeon wants me to tell them) the port is in. Make me an appt, and also chemo school? Apparently CT you have school? So thank you all in crazy town. I got some of the final testing that gets the ball rolling. I don't what kind of chemo yet. Final wait from waiting, is over.
Dorene
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twelvestrings-love your rock art. It is beautiful. Being Her - means you don't need Herceptin and Perjeta. So, that's good. The hormone staus and oncotypes I know little about. Remember, you can always ask for second opinion if you're in any doubt about your treatment recommendations. Friday, I was so frustrated because of insurance issues, I sat in my car and cried. In 15 months I have cried twice but it felt really good just to release the frustration and anger. I think I learned that from you. Thanks.
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Jo,
Man,
Funny how insurance has a hold of what happens in our lives. It has so much to do with delay testing or accepting you.
Crazy. I just got the letter in the mail of denial of oncotype test. Now I'm figuring out why my surgeon somehow got certain information and oncologist did not. She ordered the test and (insert a bunch of insurance reason hoo ha) why it got denied.
There is a nurse Liaison who said Dorene, every once in a while you "lose your s%$t. She used my words. Its not good to dwell or hold it in all the time.
Every day is a new day! Every day.. Yesterday I went to look for wigs. Just to see. I'm pretty sure I'll be a bandana person but my kid wanted to go with me. Real wigs. Look real on, etc. Except for every one I picked up was Red, fushia, blue, yea..
This cute young girl with a nice short hair cut was helping. Jo, what a gal. I said sorry I'm wasting your time. She looked a me with a little teary but big smile, and said I know what its like to do what your doing. She saw my bruised up port (Pretty high up). She showed hers and said next week it's out. Talk about holding back.. what a world..a beautiful world full of fighters.
I will send really good vibes for all this insurance difficulties to get better, and figured out. I sometimes don't do as I say but it's true. Worrying doesn't make it better or fix it. But, I do know sometimes, mostly in my car.. hehe "I lose my S&%T" Then I find it and go baby go!
Bigole hug,
Dorene
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Dorene- now you have to file an appeal with your insurance company or will a doctor's office file the appeal on your behalf? When they put in the request for the oncotype testing they might have put in the wrong code. Sometimes it's simple and other times really complicated. It is always frustrating. Especially when you look at delays in testing and treatment because of insurance denials. What a nice story to share though about the girl in the wig shop. Have a wonderful day. It is gorgeous here today. It's in the 70s and sunny.
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Jo,
Yes, you were right! They called and said they did the appeal. Extra paper work and a few changes. Hopefully it works.
I had 2 pathology labs that were out of my network and Not something my doctor or I could possibly fix. The hospital lab did not do certain tests so, they sent them to Seattle Washington lab.( I won't mention name) It was a staggering amount. I called insurance told them I couldn't possibly know what is being sent out from the hospital while I was in surgery. And, my doctor sent it to hospital lab. They paid a miniscule portion. I called the lab directly,. Told them the story, the accepted what the insurance agreed to! They literally accepted peanuts compared to the amount.
Funny, staying healthy is a full time job along with a job right?
April 1st I talk to nurse about my schedule, April 2nd is first chemo. Really, listening and reading all of your stories( I feel like a stalker cuz I looked back : ] ) I am ready but nervous. and A bit more nervouse about Benadryl in port. That stuff freaks me out in pill form haha.
And whoa, I talk toomuch now!!!
Dorene
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Dorene ..really hope your appeal works! ..wonderful story about the girl in the wig shop ...what a thoughtful girl ..so nice that she shared her story with you ..we can really all help others in little ways ...haha..laughed at the colours of the wigs .:-) Hubby's sister visited us 3 weeks ago ..she had just been through her 2nd stem cell treatment for myeloma a month before, and she looked great in her different bandanas ..said she didn't buy any wigs .
Jo ..enjoy your beautiful day ! We have been stuck in a never ending summer here ..still using the pool every day ..which is great ..but I'm looking forward to the temperature dropping so I can start working in the garden more .
My grandson's 4th birthday party yesterday ..he was so excited 🤗 What a magical age !
Hugs to all
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Dorene- I checked with the cancer center when I started chemo to make certain my labs wiuld be covered.at the center. They were covered. I remember a few years ago when I would go for my yearly physical with labs and would have to do the labs outside of his office because his Labs were not covered by my insurance company. I loved the Benadryl. They gave me a room and as soon as I was hooked up to the Benadryl I slept all day long. I were not even aware when they switch out the different meds. I received two anti-nausea medications and never did I experience any nausea from chemo. The steroids made me extremely hyper anywhere from 24 to 48 hours post chemo. That's when I did my best housework. I definitely was anxious before my first chemo.
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Lucy, 4 Years Old !! Happy Birthday!! Lots of my friends have grand kids. My Daughter is only 16. I was a late bloomer.. Had her at 43. Surprise! Was awesome. Linda, the wonderful girl at the wig shop.. she was a great kid man...I felt bad when I got all weepy..
Not gonna let appeal stay in my head! Hope for the best and whatever happens happens. I try to do my best at whatever I do so ya can't do more than that right? : } Ohh man, I cant wait to swim.. Spring is around the corner her in Ct.
Jo, I'm hopeful about appeal but like I told Lucy, I did what I could and whatever the outcome. My Aunt had breast cancer in between jobs and insurance when she was very young(47). She called It My health care. ( company name)She made deals with every hospital and medical office and paid what she could. She's 81 years old now! Great shape. When she was going through all of it she said "Worrying about doesn't sprout a money tree so why bother!"
I was just a kid and I remember so well. The money tree...Worrying Not so funny but she was right.
If Benadryl make me sleep, there will be a second coming in 2019! Man I hoping..
Thank you guys... Really.
Dorene (Who cant figure out how you all put your medical bio up! Must be in profile..)
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Dorene, yes it is in your profile! Enter info under the diagnosis and treatment tabs , mark what you want to be public. The little messages that appear at the top are entered under signature! I had to figure it out by trial and error, didn't have sense enough to ask lol.
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Happy birthday to DGS, Lucy!!!
jo, sorry for the circumstances that made you cry...but glad you were able to get some feelings out (I hope). I shed a few tears this am at frustration over just a few little things, but felt better after!
And on the topic of being in CrazyTown I had my first apt with new MO here in New Mexico today...I'd been so, so anxious about it...(probably what started my tears this morning, come to think of it..)..but the apt. couldn't have been better!! I feel like she is a great fit for me, somewhat minimalistic in her approach to treatment, which I prefer...did order the tests I really do need (Mammogram, to be spaced a year apart from my last one, now; dexa scan for bone density, it has been two years since last one), did an exam, answered my questions, treated me like an adult, told me all looked good, and sent me on my way and will see me in six months after those tests are done. Plus her staff were all very nice and reassuring. AND only five minutes drive from my current rental, only 10 or 15 minutes from new house once we move (last MO was a 70 minute drive each way back in CA..). So today turned out to be a good day after all!
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oh yeah, the move to new house: moved back to mid-April because the renovations we are doing are taking longer than expected: who knew just putting in a new door, new bedroom floors and new window coverings would be so complicated! Oh well, the work is getting done...can't wait to move though.
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Octogirl, good to hear your day improved after "letting it all out". Fantastic that you found a compatible MO. IMHO one of the worst things about moving is finding new doctors, dentist, etc. ( Yes, even worse than going through house renovations! Glad those are moving along too!) May your days continue to be good.
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octogirl, great to hear you have found new docs that you are comfie with and close!
Made it to the gym this morning, trying to get back in mode.
Also trying to decide which way to go to mass for my nephews wedding, gezz but time is getting close
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octogirl- I'm so glad everything went well with your new MO. I'm not surprised there's another delay with moving into your new home because there are always delays with renovations. I met my new PCPtoday. He is an orthodox Jew, extremely intelligent and quite the jokester. The only reason I'm mentioning his Orthodoxy is he questioned me regarding my religious beliefs. I told him I had none and he told me, "dealing with breast cancer must be really hard for you because you don't believe in a higher power." I smiled and told him of course I did, " I believe in Medicine and Science and surrounding myself with nature." He looked at me, smiled and we moved on. He was very thorough and extremely knowledgeable about breast cancer. He was well aware of the side effects with chemo drugs and herceptin and perjeta. So overall I was pleased. He did joke around a lot during my visit which wasn't entirely comfortable. I'm more accustomed to subdued physicians. Another bonus, he is certified in cardiology. My next step is making an appointment with an oncologist. Hopefully it will go as well as Octogirl.
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Jo, my son's oncologist (Hodgkin's lymphoma, 1990 still going strong) was also Jewish and a joker. At Christmas time he was "singing" a Christmas Carol ( he couldn't carry a tune in a bucket) and joking about being the only person singing. But he became very serious when finding bad test results. We were fortunate to never see him being really serious, except possibly when he was talking with me immediately after our son's splenectomy-- he did have involvement below the diaphragm which increased his stage. The good news, and hope for all of us, is that in spite of the worst cell type and a high staging number, he is doing well now nearly 30 years after chemo and radiation.
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beaverntexas- the only reason I mentioned he was Jewish because of the Orthodoxy and then his subsequent questions about my belief in God. All my doctors at Mount Sinai are Jewish. The difference is they're all very serious and this guy loved to joke around. He was even joking about being single and looking for a wife and then asked me if I was interested. I said no thank you and burst out laughing. Please do not get me wrong. There
wasn't anything flirtatious or sexual in any of his comments . I think it was his way of breaking the ice. I have cooked Passover dinner every year for the past 15 years or so because none of my Jewish friends like to cook. And I'm pleased your son is doing so well. 30 years that's fantastic. When we were discussing my breast cancer and treatment, he was serious. As I was leaving his office, he did thank me for making him appreciate the beauty in our day.
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octogirl,
I am so glad that new Doc worked out and a close ride. But honesty I hope your trips there get farther apart and less!
Just the sound of “New Mexico".. sounds warm and beautiful. I hope your home is close to done.
Comeon spring in Ct.
Who still cant get med bio in profile. And getting lazy on trying to figure it out.
How about : I start chemo: Ac-4 runs, 2 weeks apart. T once a week for 12 weeks. Exemestane 5 years. Have warrior-port armour, ready. “Chemo S@&t" bag, check. Music, check. Bag of nerves check. HUMOR, check check!
Complete answers to my lab results from oncologist, still waiting? Uncheck.. crazytown..
Dorene
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Beaverntx,
30 years is awesome. Lots more to follow!
Jo, geeze you cook to? Man.. My middle name is crockpot in the winter.. ; )
Dorene
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