Radiation recovery
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Ladies, I have so much love for you with all that you are going through! And, yes, yes, yes, the retreat really has helped me tremendously.
I have heard there are other such retreats around the country and world but don't know where or how to access them, but you CAN apply here if you can get here. It's a simple form on line. And this retreat -this kind of awesome free healing retreat for women who have been through cancer- is a HUGE step forward out of this mess. It is so so so kind.
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I've been taking care of company all weekend--my bff and her daughter came to visit for her birthday (also DH's birthday.) One day to "turn over" the house for new guests for the 4th, and through the weekend. 8 people staying here, and about 20 coming for bbq on Wednesday. I'm looking forward to all of it, but dread one visitor, who will lecture me on organics...it's really tough to say "sorry, we can't afford to buy everything organic right now."
Let me stop feeling sorry for myself long enough to pass out hugs to those who need them right now. Janis, your insurance may cover therapy for you, and honestly I love therapy!!! It is wonderful to have someone have to sit and listen all my angst -- allowing me to be self-absorbed and even petulant and ultimately helping to figure out personal strategies for coping and growing...
To the rest of my sistas here, have a relaxing and maybe even fun holiday! You are my idols!
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Hi ladies,
So, since tomorrow is the 4th of July, and Independence day.......I've decided I'm going to celebrate my independence from this cancer! At least for the day! Anyone want to join?
Sab, good to hear from you, I wondered how you were holding up with all the guests. Bet it's fun and tiring at the same time.
So, Macatac, how'd the mammo go? Easily I hope....
Truebff, I can tell you're still glowing from your retreat. What a wonderful thing that must have been.
Janis, sweetie, you've gone quiet again, and I always worry when you do that. I hope things are easier for you today, and let us know if we can help in any way. New recipes?
Joan, I'm so glad you've got time this summer to hang out around here. Your input is great. And I also get frustrated when the system drops my hard thought out replies.....bah...computers....
Have a great holiday everyone. It sure beats what we were going thru last year at this time!0 -
SAB.......I thank you for keeping me in your thoughts. Therapy is something I will talk to my PCP about when I see him in August. I have a lot of anxiety right now and am not haping with the way I am coping. I am strong and nothing will beat me down, but I really think really being able to let ot all out will help. Sometimes when I think of all the recent stressors in my life..and in the past years, it is a wonder I am not in the farm. It has not been an easy road but I have always tried to hold myself together with dignity. I am usually the rock for others, so it is hard for me to find I need a few now and then. This group has been so wonderful. I love you ladies, never doubt that.
Sew....awwww, you are the sweetest soul. I am okay, not great, but this too shall pass. Recent betryal by a person I thought was a friend, and add to that my niece is being just awful to me.....these are tough days. There are some other serious stress factors but i won't bore you with the details. I always pick myself up. It sure helps to know how much so many of you here care. It is genuine caring. Sew, promise I will take a break from cancer with you tomorrow. I know we both need it!
Joan, you are another blessing in my life and I will answer your PM soon. I have been running all day to get groceries and then to the doctor, then home to make a pasta salad for tomorrow. We are going to our neighbor's for a cookout. They have a huge family so I had to make a huge pasta salad. Then my DH wanted potato salad just for us, so we fot a batch of that made. I am really tired tonight.
Truebuff....always a ray of sunshine.....so glad we are here for one another.
Okay, my doctor appointment. This is so crazy. He examined me and said that I am completely healed from the surgery. He also said that the lining of the vaginal wall is very very thin, and that is what is tearing during intercourse causing the bleeding. A very simple fix he said. I just need estrogen! OMG did this guy ever read my medical history? Hello, I have BC and we are trying to chase the estrogen out of my body. Not an easy fix for me. After some thought he came up with a medication that he said will help, is not a hormone and it can be safely taken with Arimidex. It is called 'Estiva'. I asked him how long I need to be on this drug. Just for LIFE! Okay, just shoot me. My coping skills are beginning to wane here. I took the prescription and left. Had to go to the store to pick up some much needed necessities since it was payday. Then home to make salads. Before I started cooking I called my MO's office. I wanted to know if he thinks this med is okay. I talked to one of the nurses and she assured me this is a 'good' drug and go ahead and get it filled. Of course I had to Google it and love the main SE's. Blood clots, and stroke....the warning on stroke is if you have one, it is more likely to be fatal. Great. Now I don't know what to do. Why does this damn disease have to present so many ongoing challenges? Sick of that part for sure.
Okay enough with the whining! You ladies are the very best. I will certainly consider therapy. I am really feeling the need to talk with someone objective who can officially tell me I am nuts!
I hope everyone has a safe and happy, cancer free 4th!
Love and hugs all around.........
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Sew, love your independence celebration idea! We should all join you in that!
Janis, I guess the good news is that the surgical healing looked good?? It would be great if the Estiva could give you some relief. My MO said that she would be okay with me returning to using the Estring that I stopped as soon as I was diagnosed. Not sure if I will or not....may go with some of the suggestions that the ladies on the "painful intercourse" thread so thoughtfully offer. Have you read that thread?
Also, is there a strong reason that you feel you have to wait until August to start therapy? It sounds like you are bearing up under so much pain right now, with one stressor after another, would it make sense to start the "looking" process now? I'm not sure about how things are in your area of the country, but good therapists are often booked up here, (and most vacation in August) so you might want to check into some reputable (and knowledgeable about BC!)referrals now. I agree with you that you need someone to just listen to your concerns, and be there for you as you decide on the dignified paths that are most productive and healthy for you. In the meantime, you do also have some wonderful friends who look after you here. They are a great group! Peace......0 -
I am lonely on the holiday evening. I am so much looking forward to Friday. My surgeon and I are going out for happy hour again. I am so blessed to have her. The thing that would cheer me up the most would be a face lift. My surgeon mostly does breast reconstruction and not face lifts. I can't afford one right now, but my surgeon is going to talk to a plastic surgeon friend of hers to see if he will do it for me low cost. No matter what is going on if I look good I feel good. I am a little scared of my one year mamo coming up Friday July 13. Besides my cancer spot when I had an mri my surgeon thought he saw a shadow in a different spot. Then later he said he talked to the imaging place, and he said it was probably more like a vein. My surgeon is coming with me, so it will be less scary, not having to go alone. I will be glad when that is over. Have a great 4th everyone. I am blessed with great weather. Santa Monica is 68-70 all this week.
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Hi to my friends here, hope you had a great Independence Day!
Thanks for your kind words. I was away for the 4th...made a hotel reservation upstate NY near my brother - turns out they had plans and we couldn't get a refund. So DH and I went anyway....all we did was eat...and watch tv in the AC. when it was time for fireworks, it started to thunder and lightning so we stayed in. Was lonely....but saw brother & sister in law for breakfast today.
Kate - I went back to school in the 90s....got BS in 99...my mom died 4 months before i got my degree :-( then I went right into grad school and graduated in 2004 with MS - I was my advisor's first grandmother grad! I was 55. So glad i did it.
Momine, you mentioned shortness of breath - I have been experiencing that a lot lately and today took half xanax to relax. I never thought it may be from the Letrizole.
Sew - am hoping to rearrange my life so I can be here more often. Lots of baggage and "stuff" to get rid of.
Janis, it is so sad about your niece - life is too short for this stuff....I hope it resolves somehow.
Nite all,Joan
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Joan how wonderful to get your masters at 55. It is NEVER too late.
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Joan, I put that badly. I don't think the shortness of breath is from the letrozole. I think it is from the rads or possible from chemo. The doctors checked me out and I have no signs of any damage, which is great, so they are trying to tell me it is anxiety. I beg to differ, because I know what anxiety feels like (from when I was diagnosed and freaking out, but also from the years I had a young teen daughter who sometimes stayed out late etc).
I do love my PT. When I described it to her, she said, matter-of-factly, Oh yes, everyone gets that. In her experience it is very common after treatment, even if there is no observable damage.
Apart from rad damage, I also thought it might be allergic. While it was going on, I also had a runny nose and a "thick" voice just as I had when on taxotere. The shortness of breath would be added to the mix when I started walking, which is what used to happen to my daughter when she had allergic asthma. I was never allergic before treatment, but my mother developed new allergies after taxotere treatment, so I figure it might be that.
Lastly, if you have shortness of breath, you should obviously check if you are anemic and it might also be a good idea to check your B12.
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Not to upset anyone, but when I was on my first round of DD/AC, I developed severe shortness of breath that required a lung CT scan...it turned out it was pulmonary embolism from the chemo. I gave myself daily shots of Fragmin (a blood thinner) for 6 months. After the chemo was done, I saw a hematologist and he said after 6 months I should be OK and could stop. He said to keep an eye out for symptoms and so far, so good.He also recommended to my MO that I take Arimidex instead of Tamoxifen because of T's SEs of possible blood clots. My hemoglobin is good but B12 is low.
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Schatzi, yes, I think that was another reason why my doc ordered a CT as well as a heart triplex. Thankfully, mine was not due to an embolism.
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Momine...thank goodness! We have enough to deal with as it is...it's amazing all the "extras" that come along with BC isn't it?
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Schatzi, sure is. I am sorry you had to deal with that.
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I am glad to hear you weigh in on the shortness of breath. I did not have chemo and I doubt it is rads damage. I have allergies, and they have changed from runny nose to sinus blockage and post-nasal that affects my back of throat -- am always congested. I feel at times I cannot get a deep breath. Then anxiety makes it worse. I am trying to get rid of excess weight and have been walking. Even so, sometimes I have it sitting in the car or on the beach. Can't figure it. I take nasal spray, eucalyptis inhalant, and sleep with AC. Yesterday I took xanax in the car to get my mind off it. I don't like to take it every day. It could be partly allergy-triggered, and anxiety. I am very claustrophobic when I do not have an "out". I take anxiety stuff too. How in the world did I become this person??
J
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Joan, give yourself a break! Cancer is a bitch, you are allowed to freak a little. Can you get the allergy part under control?
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Momine,
Yes, allergies are pretty much OK but I panic when anything is blocked or my meds are not in hand.
I think what I failed to acknowledge is that sleep may be a factor. I need to try to establish more relaxed and longer periods of sleep. It is a huge issue for me. Is there sleep therapy?
Joan0 -
Yes, actually I think sleep clinics are pretty common. If you can start tackling some of the things that mess you up, it ought to get better, slowly but surely.
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Hey, Joan, I vote for,the sleep therapy as an aid. Or daily naps. Also, I had lung issues after rads several months ago and I was getting concerned. Felt like I'd smoked a pack of cigarettes. Also had an annoying occasional cough. Those symptoms are now cleared up for the most part and no longer a worry. I think I'm several months ahead of you in the recovery game as I finished rads the first of November. So,,,,perhaps time and rest will also cure you. Oh, and I no longer panic when I don't have my Ativan close at hand although I rarely took them
And, Janis, have you had your thyroid checked since your thyroid surgery? You know, it can take months for your body to figure out the correct dosage needed, and a low thyroid will also frequently lead to depression. This could be adding to your woes. Just thinking about you and hope your niece has quit being hurtful and mean.....
I don't know about you ladies, but I thoroughly enjoyed my cancer independence day. I'm considering scheduling such a day once a week.0 -
Schatzi, how scary to discover you had a pulmonary embolism. I am so glad that is behind you now but that had to have been an ordeal. Yes, BC certainly does come with an amazing amount of new baggage.
Momine so far I have not experienced significiant shortness of breath. Thank goodness, that is not something I would be comfortable having to deal with. I do have allergies but have been able to keep them under control. So far so good as far as any pulmonary issues go with me.
Joan, you should be so proud having accomplished so much in your life. That is outstanding....make sure to remind yourself now and then how strong and tenacious you really are. School in your 50's is surely not for weenies! I will definitely join you in sleep therapy. I have to be the world's worst sleeper. I have had insomnia all my life, but it is now so much worse. I have so much on my mind and so much stress right now. I can totally relate to how you feel as far as "how did I become this person"? Sadly I ask myself that a lot lately. Some days I really don't know or understand the new "me". The new problem with my issues with sex are no fun. I decided not to take the Evista my gynecologist prescribed, and my DH agrees. The main SE's are just far too scary. So we have to see if we can find an alternative that will not cause all the pain and bleeding. That....and now my joint pain is really bothering me. Both knees hurt, my right hip, and my left shoulder. When did all this start? In the last couple of months, but escalating. More severe. Every Friday we go to garage sales. Cheap entertainment and get us out of the house. I love them and we can go for hours. My car is an older model and is low. Getting in and out is difficult. Today we were in and out so many times and after just over an hour I was in pretty severe pain. We continued for awhile, but after about two hours I told Chuck I had to go home. This is nuts and so unlike me. It made me so sad. I want my old normal back. I used to have so much energy and that is waning. The joint paint though is the worst, and very depressing. I took have Xanax for anxiety. I am shocked these days the things that make me feel so stressed. My glass is still half full, but I hate the bad days that is for sure.
Sew....I did have my thyroid tested a couple months after my right lobectomy. It was slightly low, but my PCP ran it a couple weeks later and said it was normal. I go see him Aug. 3rd and wants him to rerun it. My oncologist never orders any blood work. I wonder why? I go back to see him late August and plan on having a long talk about this joint pain. The last time i mentioned it I was told that the joint pain from Arimidex is usually confined to the hands. Really? Maybe I should print off a few dozen pages of the Arimidex SE thread. There are a large number of women there who would beg to disagree.
I am glad the 4th is behind us. We went to a cookout at our friends and that part was great. One of my two dogs, Murphy, is absolutely petrified of fireworks, thunderstorms, and loud noises. I have to get meds from my vet for him, poor baby. He is a large dog and was so dopey he could barely get up on the bed. He HAS to be held by me in order to feel safe. He plopped his body right next to mine, and fell asleep, snored, and about smothered me. It was so hot in the bedroom I was miserable with him piled so close. So many people here set off tons of fireworks late late into the night. It sounded like a war zone. It went on until almost 2:00. I finally got Murphy into his own bed and he slept well. I was a lot cooler. It was just a long night.
Kate, hope you are having fun tonight with your surgeon. A night out is always fun.
I am tired. It is early and I am beat. I am going to lie down and read.
Take good care ladies....I hope everyone has a wonderful weekend. Sweet dreams!
Janis
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I did go out with my surgeon tonight, and OMG I am so blessed. She is so much younger then I am, and she said we have to do this next Friday. Next Friday is my one year mamo, and hopefully we will be celebrating
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That's good news, Kate. Sometimes I feel I will shrivel up if I don't talk to other adults....and put the BC on the back burner for awhile.
Janis, you are right - glass is always half full.....at least. Glad you reminded me of that.
You mentioned the Arimidex - I had such joint pain in my leg and shoulder in addition to my thumb joints. It hurt to drive the car for awhile. But for me, it moderated.
gotta get sleep....more soon!0 -
Sew, exactly! I used to smoke, and I told the lung doc that the feeling was exactly as if I had sucked down a pack of cigarettes in a smoky bar the night before. He sort of smirked, "Oh, so you know what that feels like, do you?" Oops!
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Momine ....I think it is from the rads .
I so agree ! This is precisely why I felt I had to opt out , with my lung disease. I researched thoroughly and even with APBI to my left side, I knew there was no way it was not going to hit my lungs. The RO did say she would do all she could to minimize that , but once you have lung disease you really don't want to add to any shortness of breath or damage/fibrosis whatsover.
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Purple, I hear you, although the good news is that it is fading and all the scans and tests show no evidence of any damage. So, it is annoying, but should hopefully pass.
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Joan I almost always pit bc on the back burner, even with still needing 2-4 breast reconstruction surgeries. The only time I think about it is the day before and the day of a doctor's appointment. The day before because I want to write a list of questions for the doctor. I must admit that I have been thinking about it a little bit more now because of my 1 year mamo this coming Friday. The reason I almost always keep it on the back burner is because not thinking about it or talking about it keeps you young, and I am young at heart.
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kate...mine is coming soon too...as soon as I can get an appt...scared silly I must admit!
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Had mine afew days ago. Indeterminate. Have to have an MRI. Nothing suspicious but radiologist an't see the surgery site due to a large seroma. Have had that sucker drained five times. Hope the surgeon can figure out a permanent solution.
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Pt dreamer sorry that you need an mri, but you will be fine. Schatzi we both will be fine too. Have a great weekend everyone
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I think about BC somewhat often - especially now that I'm only working 8 hours/week until 8/20. I think about it a lot right now because I am doing the same things as when I was diagnosed - lots of walking on the beach and time to think...and I think about being grateful that my recovery was uneventful. And I think about it when I take my meds and seem to be at the drugstore all the time.
My mammo is July 17th - we will have a pocket marathon for sure....How does one know if there is possible lung damage from rads? Does it occur immediately? Over time? Would it show up on an x-ray? Until I know otherwise, I think I'll assume my shortness of breath is anxiety.
I don't think about the bad effects of BC very often, but it just doesn't seem to go away.
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Joan811, I think it is quite possible that we have some damage from radiation. Mine was also on the left and I notice that i'm short of breath when I try to walk fast or up hills. Not a problem before radiation. Hoping to build up my stamina again.
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