Radiation recovery
Comments
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Joan so glad you are going to try the porridge. I warmed some up for breakfast today. Cole is a huge inspiration to me. He has never once bemoaned his situation. He has always accepted it with grace. He is a darling boy in so many ways, this summer at MDA camp he had a date to the dance with a girl named Elissa. I saw pictures. So cute! Elissa has MD also, but she was walking and looked to be a bit older. He is beginning to notice girls, and he has no shortage of them as friends.0 -
Kate I hope that is the same Killer Shrimp that used to be in the valley on Ventura Blvd. We used to go there all the time. Loved it. I heard they closed in the valley so maybe it moved over the hill.0 -
It rained cats and dogs last night with thunder and lightening. Power outage and of course my basement was a little wet and a few drips in my kitchen. The guy is doing the flatroof next month. Then I have to move out so he can do the kitchen nook wall that is seeping...don't get me started on that one done 3 years ago. Then go into the den and fix the plumbing in the bathroom above, replace the ceiling and last but not least knock into the closet wall and do the upper plumbing stack. Oh I am just so excited.
Where did spell check go?0 -
Good evening everyone.Hope everybody is having a good one.They had a surprise party for one of the doctors at work last night.Well my husband and I went and actually had a good time and They even had all of his previous associates and nurses and MAs stand up and relive some of his finest moments.It was fun.The doctor who started the practice like 40 + years ago hosted the party at his house.
We ate out on their patio.Everyone brought a dish and I even saw my Breast surgeon there.I don't think he recognized me at first.It was so weird to see him relaxing and kicking back with a beer with his wife.The guest of honor was my surgeons father in law.Sometimes you forget doctors are people too.Remember the pictures I shared of the Komen race for the cure? The lady who took all those beautiful photos was there with her hubby.He really hit it off with my hubby and it turns out they live really close to us.It would be nice to have friends to do something with occasionally.0 -
Josie. Your party sounds like fun! I hope the couple you met turn out to be good friends to you and your hubby. It is so hard to meet good friends these days for some reason.0 -
Thanks Gigil, the woman I work with ,her husband is the one we never met before.Beth actually missed her calling as a photographer .She could do that for a living instead of answering phones at my work. Your right it is hard to meet good friends these days.0 -
Joan, love the bag-tanger outlets?
Hugs to all.0 -
Josie, it's about time your work brought you some happiness and fun! And it would be great to get a good friend-couple out of it. We don't quite have that but we have close enough to it to see what we're missing. In particular I wish my husband had more friends. We moved to where my work is, so I have plenty of friends and contacts. He's made some through various town offices he's held, but his workmates are all 1 hour+ away. When we lived in VT, we were two blocks from his work and he was much happier. We both hate long commutes but our jobs are a little over an hour apart. He works at home 2-3 days a week and drives the other days, which wipes him out but is worth it once he gets there. It's a puzzler.0 -
RunFree, that's how my husband is too.His close lifelong friend now lives in a rural town called Carrollton MOclose to Kansas City.So he really has Very few close friends.0 -
Lost my post...for some reason when Ihit submit sometimes I go the log-in screen (again) and then I know my post is gone.
Too tired to re-write it all...I know you know how it feels...
more tomorrow! Long live the week end!!!0 -
It is a gorgeous day in Santa Monica with a high of 84 degrees. I am feeling well today and so excited to see my friend. Josie I am so glad you had fun. It is about time for you to have enjoyment. You have been through so much.
I joined a bladder cancer support group. I have met someone who has been stage IV for 8 years. That has brought me so much hope.0 -
Oh Kate, how wonderful! I love it that you're feeling groovy, the weather is perfect, your friend is back, and you have a new bunch of bladder cancer supporters. The long-term Stage IV person is a great inspiration! I hope you have such a beautiful day.0 -
Such good news, Kate-first, that you're on a treatment vacation, and then the kicker--that you've found a bladder cancer support group. It just sounds like everything is working for you, (especially tonight's dinner). Enjoy.
Love the bag, Joan. I'll be in Portsmouth for a couple of days this week, and might just hit the outlets, hunting down a new bag for myself.
So glad your office party was such a positive experience, Josie. You really deserve some positive work-related experiences.
Cindy, just wondering whether hubby ever made it to school, or if he's still in diabetes toddlerhood?0 -
Kate - That is fantastic news. I am so happy for you. It is always good to find a support group and especially one with long term survival. I am also glad your friend is back. Makes all the difference really.0 -
Runfree, Brookside, and Bunkie thanks so much for the support. Tracy is picking me up in about 40 minutes, and I can't wait to see her. She brings me so much optimism. She is a bubbly, vibrant 41 year old, and I have so much fun when I am with her. Not to mention killer shrimp and margaritas. Fun fun and more fun YEAH!0 -
OMG I had such a good time last night. "Killer Shrimp" restaurant was fabulous with killer views of Marina Del Rey harbor. Gosh I feel so much better physically and emotionally. Tracy has such a positive effect on me. She loved my fall, and thought it looked so natural on me. That made me feel good too. She is a little depressed because at 41 she can't find a signifigant other. She is gorgeous, smart, kind, and affluent, and I can't understand why Mr. Right has escaped her. It could be because she is a doctor. Most men are intimidated, except for doctors, and she does not want a doctor.0 -
Kate, how wonderful that you had such a great time with your friend! I will put Killer Shrimp on my pipe dream list for if I'm ever in the LA area. (And of course, I will look you up!) I do feel for your friend. I bet it is hard to meet men from that job.
My itching has been almost nil and my spots seem to be healing. But I went back to the derm today, and now I'm bummed. The biopsy path report said "reactive perforating collagenosis." That's where a deeper layer of skin penetrates the outer layer, which was visible under the microscope. He trusts this pathologist so that's his diagnosis. He said, "If you go online to look this up, and I know you will, you're going to be freaked out, because it generally appears along with something dire." He said he's seen it only a few times, and always in patients who were already on dialysis. It is usually a features of kidney disease, eg from diabetes or some other kidney failure. He said it also appears with lymphoma, thyroid cancer, and now I've found some other things--AIDS, liver dysfunction, and so on. My derm is not really worried. He said it would be extremely weird for this symptom to be the only manifestation of one of those diseases. He said with an itchy rash, it's always a question of whether it's a rash that itches or an itch that rashes. In my case, he thinks it's the latter: Tamoxifen made me itch, so I scratched, and that brought the rash. The biopsied skin showed signs of having been scratched, so he thinks the perforating behavior is an unusual result of scratching my Tamoxifen itch.
I am not really convinced. I wonder if the skin was already compromised by the Triamcinolone, which he told me has a thinning effect, so it was easily perforated, or if maybe the sample got messed up. Of course I'm also concerned that I could have something bad. He doesn't need to see me again for a month, during which time I'm to stay on the cream and Tamoxifen. But he told me to go have a complete physical, with CBC and thyroid checks. I've now scheduled one for 10/28, and I've exchanged emails with my MO about what tests my PCP should do. It doesn't help my mood that I'm having tummy trouble today and also did a couple of days ago. I've been told that an occasionally grumbly tummy is very normal for someone at my age (harumph), and I did take a couple of food risks in the last few days. But still, I have to wonder.
I was expecting the biopsy to be inconclusive, which would have been OK, given that my skin seems to be doing better. So it was hard to get this exotic and kind of alarming diagnosis. I was soooo ready for NO DRAMA. I know you can all understand that. When I got home, I felt overwhelmed and tired, that particular tired you get when you know it isn't just physical. I bailed out of some afternoon commitments, and I'm going to do the minimum tonight.0 -
How alarming, RunFree! But it is wonderful that he thinks it is an itch that rashes, rather than the other way around. And that it seems to be resolving. My guess is stress, stress, stress,and your body went bonkers.
Doubtless, with all the tests we've all had over the last year or so, if there was anything the least little bit creepier than a plain, ordinary,absolutely infuriating, and completely harmless, itch, you'd know it, and would have known it for months.
Of course, we're all going to research the thing too--what an education this bc is giving us all!0 -
Thanks for the good cheer, Brookside. I confess I don't really feel that thoroughly tested. The derm said, "Your MO knows everything about you, right, and checked you out from head to toe?"
I had to say no. She hasn't ordered any blood tests or scans, so other than my recent mammo, I'm still working from the limited CT scans I had for rads and the breast MRI and lung x-ray I had after my initial biopsy in January. Nobody's looked at liver, bone, thyroid, white cells, etc. I don't even get complete physicals, like ever. During all the years I was on the pill, I just used my annual pelvic exams as a general check-up. My gyn orders a CBC every five years or so and that's it. I know I've had my thyroid tested, but not in at least ten years. When I called my PCP's office today to schedule the physical, the scheduler expressed surprise that I hadn't had one before--but nobody had ever suggested it. So there's room for more unwelcome surprises.
My new emotional strategy (let's see if I can keep this up) is to say the diagnosis is poppycock. Of course I'll have my physical and get her to test for everything my MO asks for, but in the meantime I'm hoping to become the Queen of Denial--because frankly, there's no advantage in considering what this diagnosis might mean until I get that info.0 -
run Free.....wow....that diagnosis was certainly a shock, no wonder you were drained by the time you got home! I have to agree with the derm though, if you had anything really dire such that this perforating disease showed up, it sure seems to me that you'd already have other symptoms. All I can say is, that was some getaway at the beach you had with hubby! It sounds like none of your docs are particularly worried about this path report, or they'd be running thyroid/liver/kidney disease blood tests now. Take heart in that and ...hmmm..treat yourself to a glass of wine? Janis will make you cake balls in absencia, which we can all enjoy......0 -
run free...just read your second post, I agree with the denial strategy.....we will call you Lady D Running Free.....which is hopefully all this path report deserves....you can just be one for the text books that teaches why not to believe everything a path repor0 -
Runfree I am sorry that you have this aggravation. Thinking that the diagnosis is poppycock is good. Stay positive and everything will turn out fine.0 -
RunFree, I'm so sorry you had such a rotten diagnosis.I hope it's really not that.Maybe it's wrong.I can't believe your PCP let your physical slide for so long.Try to relax and not get to stressed .I know easy for me to say.0 -
RunFree I read up on that diagnosis and something just does't feel right about it. It started so suddenly right, it just doesn't make sense. You haven't been diagnosed with diabetes, unless that is a new thing that hasn't been diagnosed. Even if it was one of your diagnoses or if it is a renal situation, it seems unlikely it would go that far, that fast. The skin manifestation should be secondary to the primary diseases, which would have many more symptoms. It just doesn't seem to fit. I am not a doctor, but my husband is. I have worked in medical research and I have researched things like this for years. Of course that doesn't make me an expert by any stretch of the imagination but logic just fails me on this. I really think if anyone sticks to this diagnosis, you need at least a second opinion. The occurrence is so rare, it is not a diagnosis I would think any pathologist would rush to without supporting symptomology. Just my thoughts at first blush on this, for what they are worth. I hope I am right. The type of this skin condition that people are born with is extremely rare. I would assume you had a pre-op before any surgery for your bc. Something would have shown up there definitely. Hmmmm it is a head scratcher.0 -
Whew, i am sleep deprived. Mondays are so hard. I did not catch up this week end.
Kate, glad you had a good time...Keep thinking positively.
Runfree, I don't know what to think of your skin dx...it sounds like something set your skin off and it may be the exotic condition but without the sickly cause.
Well, I took my new bag to work today and I couldn't fit everything in...not because it isn't big enough - I just had too much stuff.
Time for sleep...the alarm goes off in 6 hours.
Wishing everyone a great week!0 -
RunFree were you ever tested for Lyme's Disease? I was just reading about other skin disorders that can be mistaken for reactive perforating collagenosis. I saw some studies that mentioned Lymes for one.0 -
Joan I can so relate. I am constantly switching bags. I have quite a collection here, and last year I went to a backpack for awhile, until my father told me I might be mistaken for a terrorist. That backpack was getting terribly heavy. The more room I had, the more I started trying to carry. I was just studying bags online today and watching videos on each one on Zappos.com I like lots of dividers also, and one big opening in the middle is a recipe for disaster for me. The frustration is just too much, trying to find things. It is a never-ending quest, isn't it?0 -
I'm dashing off to work, but I want to say a quick THANK YOU to all for your beautiful support, as always! GiGiL, thanks also for saying the Dx just doesn't sound right. I will ask my PCP about Lyme, which is somewhat common around here. Good sleuthing--I didn't find a link between this weird skin thing and Lyme. Joan, I suspect in the end it will turn out that you nailed it: "something set your skin off and it may be the exotic condition but without the sickly cause." I do feel blue still, like I have a new cloud over my future. Denial not quite in operation yet. Yet my spots are almost invisible today. I could have been feeling so much more optimistic. Off to my busy day....0 -
I think the thing has run its course. No need to worry--you'd know if anything serious was going on. As someone else mentioned, you had blood work before surgery, and someone would have let you know if they were skewed.
Have a happy day!0 -
I'm with Gigil, go for a second opinion RunFree.
Joan I hear you on the bag.But I am conforming myself lately.I find if I have too much room in my purse I start stashing every little receipt or piece of paper I think I will need.When your wallet becomes heavier than your purse and not be cause it has money in it then you know you have a problem.That is my problem.So lately I have had a tiny little purse that has a built in wallet and lots of little zippers on the sides .It's one with a long strap that goes over your head and you just cross it over you.Best $20 purse I've ever had.0
