Radiation recovery
Comments
-
Hi Sew,
I definitely did not take offense at your post. The world is made up of very different individuals, and when people are ill they handle it in many different. ways I would never try to convinve you my way is right. If I were writing a book about this I would never claim that everyone should handle their health issues the way I handle mine. All I am saying is I am doing it this way, because it works best for me. The only people I want to talk about my illness to is family, a very few close friends. bc sisters, and two doctors. So no I will not discuss this with nurses at all, and I won't need to. Thank God my dr. takes the time to answer all of my emails. Sometimes I have pestered him with 6 emails in a day. He is always patient and compassionate, and I get the answers I need usually when I need them. Remember too my close friend dr. that I go to happy hours with. If I can't reach my mo I can always reach her. I am blessed to have them both in my life. When I am at chemo I am praying I can tune it out and escape with my laptop. It works best for me not to think about my illness too much, and in that way I can stay more positive. Do I profess that this is right for everybody heck no I don't, but I know what works best for me. I have several close people In Santa Monica, and I am so blessed to have them too. If I look good I feel good, and I have a friend who is a hairdresser who comes to my house. I have a social worker who comes to my house once a week, and calls several times a week to see how I am doing. I also have a wonderful lady who cleans my place, and would do me any favor. I am totally blessed to have these people in my life. With them in my life It will be earier to do chemo. I also want you to know that I have never had bladder cancer before, and I've never done chemo before, so will I be able to handle this exactly as I stated, I don't know. What I have is quite scary, and maybe even in as short as one week's time I may have to completely change how I am handling everything. I will have to roll with the flow. I wish you the best, and I know you weren't implying that your way is the right way. I appreciate your support and advice. Hugs, Kate
0 -
Janis,
I am sorry you are experiencing anoter lump. Goshe you have had so much on your plate. I hope it turns out to be nothing.
Hugs, Kate
0 -
Hi Run free,
I am glad that you are doing well with rads. I hope your bug bite will be ok. I am glad you are having fun with the different people who drive you. You are a doll, and I so much appreciate your support
0 -
Runfree I totally forgot to mention that I hope all of your friends are ok. April thinking of you, and pray dd is not still on lockdown.
Love,
Kate
0 -
Hi Bunkie,
I am so sorry you have flooding. Gosh you didn't need this. In Chiago two neighbor's of my son are flooded, but thank goodness his house is ok. Chicago's weather was horrible today with ice and snowflakes. Hugs, Kate
0 -
Hi Cindy,
You are right grandchildren are the best. You are a doll, and I so much appreciat your support
0 -
Joan,
I am so glad you had a great trip. God only knows you needed arest. Thank you so much for sharing your experience, and letting me know how you handled things. You are an angel, and I so much appreciate your support. Hugs, Kate
0 -
Hi Lemon,
I am so glad that you are feeling better. It is tough to see tears in the eyes of those who love you, while you are hurting. It is so totally nice of you to take care of the others. Hug, Kate
0 -
I had a fantastic day today with family, but it ended badly.
This afternoon I went out to lunch with three cousins I haven't seen in about 5 years, and we had a great time. Then my cousin dropped me off at the local mall North Brook Court, and my daughter-in-law dropped my 9 year old granddaughter Emma there, so we could spend time together. I had a blast with her going for pretzels for a snack, and to Claire's to buy her a treat.She wanted a stuffed animal, and I bought her 5 year old sister a three bracelet and 3 necklace set that is very sparkly. My five year old granddaughter Molly is a girlie girl. Then I went to a toy store to buy my 5 year old grandson a toy Audi. While at the mall I felt like I could barely walk, and I was totally out of breath, and I couldn't figure out what was going. On. My son picked us up, and we went back to his house for dinner, and I felt so out of breath that I had him carry my handbag, because that was too heavy for me. I had a great time with my son, daughter-in-law and his 3 children. When I came back to the hotel room I finally figured out what was going on. My leg is swollen up like a balloon again from my ankle all the way to my thigh. It is twice the size of my other leg. When this happened right before I had surgery I had an ultrasound and it was negative. When I had surgery I thought the surgery was what relieved the swelling, although one or two days they gave me hydrochlorothiazide. I stopped it after the swelling went away. April 19 is my MO's birthday so he is hard to reach today. He sent me one email saying I should get an ultrasound when I am here in Chicago. I emailed and told him I can't do it. I have a brunch at 9 am with my cousin and his two kids. Then at 4 we are taking my grandchildren bowling. Then at 6 we are going out to dinner. Sunday from 1-3 I am going to see my granddaughter who I couldn't see the rest of my trip. I am almost 95% sure there is no blood clot, but exactly what is causing it I am not for sure. My friend Dr. told me to take hydrochllorothiazide, and luckily I brought it with me in case I had a high blood pressure problem. I took the pill over two hours ago, but it did nothing to relieve the swelling. Originally I read everything about stage 4 bladder cancer, and then it scared me so I stopped reading it. From what I remember it said that the tumor could press on my leg and cause swelling, or something to that effect. I sure hope it goes away I so much want to enjoy my last full day here without pain. I am sure I will hear from My MO in the morning,and see what else he wants me to do other than an ultrasound in Chicago. I told him to schedule one for me in Santa Monica on Monday. In the meantime my friend doctor who is Tracy Cordray told me to sleep with three pillows under my leg to elevate it. I am going to try going to bed now. It is 1:40 am in chicago and I have to be up at 7 am. Hugs, Kate
0 -
Oh, Kate. What a lousy time to have this crummy problem! I sure hope sleeping with your leg elevated helps a (giant) lot and you wake up svelte all over. Poohey!
0 -
Hi Brookside.
I took a hydrochlorothiazide, and slept with my feey elevated. and it seems to be a little better. I am keeping my fingers crossed that I can keep the swelling down at least ubtil I can get an ultrasound Monday. Thaanks so much for your support.
0 -
Kate I am sure this new lump will be nothing, but I will feel better when I hear it from a doctor. Thanks for thinking of me. I am really sorry about your leg. I do hope you are better and can still enjoy the rest of your trip. I know how much being near your family means to you. Just be careful and watch that breathing issue. Don 't take any chances. Take care.
0 -
Kate, did they test you for a blood clot?I'm assuming that is why the ultrasound is needed.You might be careful of the out of breath symptom.I certainly don't want to scare you but have you ever heard of a pulmonary embolism?Sometimes if a blood clot breaks free it can travel to the lung.They did do a biopsy of the lung right?There's always a risk Of the trauma of that causing what I just mentioned.I'm so sorry I feel I may have said too much and possibly sent you into a panic .I definitely don't want to ruin the rest of your trip by jumping to conclusions I m not a Doctor nor am I trying to diagnose your symptoms.
0 -
Janis, Joan and Sew-
Thank you so much. Janis what happened to you sounds like me, it is good to know I am not alone. Seems like most do not have such a severe reaction, and I am so glad they dont. Joan I cant imagine doing this at the holiday time, I am sure that was not easy for you to do. Sew- I appreciate your sharing, I am starting to feel more like me and I do see my energy levels going back up. I appreciate the tips.
I might actually try to wear a bra today!! Crazy that I would get excited about that! Its been weeks and these girls need some support.
xoxo
0 -
Kate,
I think if this swelling doesnt go down or your still having shortness of breath you need to go to a ER and get checked, even for your own peace of mind. I dont think you should be getting on a plane like this either.
I am sure your family wants to see you feeling good and would understand a side trip to get checked out. Please dont take chances, Josie is correct something may have happened from the biopsy.
Lemon
0 -
Yuck...Kate.....Ugh. I know this is SO what you don't want to deal with right now!. You know, the hydrocholoroT is also a diuretic, and it could be that you've got a bit of fluid build up in the lungs from overdoing it, causing the shortness of breath and possible swelling in the leg. I am not a Dr. and have no idea if this is right or not, but do know you've got those nodules. You had a wonderful, but very long day on your feet yesterday and I guess I'm not surprised that you might get some swelling. I agree with everyone else that you need to get this checked before you fly. It would just be prudent.
I'm also very, well, relieved, to hear you say that you will go with the flow for your chemo. I think that's the real key to fighting off this blasted disease. A positive attitude, a plan, a will to fight and the wisdom to change plans when the first one isn't working, or at least relax and ask for help those times it is needed, much as none of us like to ask for help. that's why I think Run-Free's driver plan is so great. She has a need, and her friends are all willing to chip in and help because that's really all they can do for her, and in the process she's renewing/making some friendships and making good memories of a potentially yucky thing. RunFree, I applaud you on that one. Kate, you and I could probably both learn from that one, as I know it's as hard for you to ask for help as it is for me.....but sometimes it's really just plain better for us! So says Mother Hen.
So, let us know how you're doing and what you've heard. We're all worried.
0 -
Lemon...a bra! Now, that is a step forward! Makes you feel like when you were 12 ang got your first one, right? Actually, after my skin healed, I tried bras and not one of them was comfortable. I finally ended up pretty much bra-less for about a year until I got my lymphedema diagnosed and started treatments. Then I ended up in a compression bra. Ugliest thing you've ever seen. Huge. Lots of elastic. Not a touch of lace on it. But, I will say it's the most comfortable thing I've ever worn, the straps at about 3" wide support these boobs effortlessly and never fall down, and I will say, my boobs haven't been this high in, oh, 40 years? Just have to wear turtleneck tops to cover it up, lol. Amazing the things we will tell our BC sistas, isn't it? Enjoy your refound energy...
0 -
Lemon I too was anxious to wear a bra again, but for me it took quite awhile. The breast was far too swollen and still leaking fluids for awhile. It did feel good to finally get a bra on. My LE specialist referred me to a women who sells all the bras, LE things, mastectomy bras, everything. She was so sweet. I got two bras from her. She ordered me a cute little fake boob to pad up my good breast as the BC breast was still so swollen I was lopsided! These bras have inserts on the inside of the cup to easily slide the foob into it. I still went braless for some time until that LE was finally under control. I am awfully glad to hear that you are feeling better today....it will get better every day from here out. Rads are done and now you can plan your life a little easier. Good luck to you.
0 -
Hi Janis,
Thank you for thinking of me when you have your hands full with medical issues too. I pray that lump will be absolutely nothing.
Thank gooodness a feel a little better now. Last night I took a water pill, and kept my leg elevated when I slept. I am so glad that I will be able to enjoy the day with my family. This morning four cousins of mine and two of their children came to my hotel for brunch. My cousin has a 2 year old and a 7 year old, and I had so much fun with them. My son is picking me up at 3:30, and he my daughter-in-law Marie, my daughter Mindee, and her boyfriend Louis are taking 4 out of my 5 grandchildren bowling ( I will be the score keeper). Then after bowling we will all go out to dinner. Tomorrow I will be able to see my 5th grandchild. Her and my daughter are taking me out to lunch, before they take me to the airport. Family is everything, and it will be so hard to leave here. My breathing issue was only because of all the extra weight on my leg. It made me feel out of breath. Today it is fine, and I can do everything I can normally do, and I am not short of breath.
Thanks so much for your support. Hugs, Kate
0 -
Hi Josie,
You have not said too much or put me in a state of panic. It is so nice that you are thinking of me when you have medical issues of your own. About 2 weeks ago I had an ultrasound for that leg, and thank goodness it was negative. Last night I took a water pill and elevated my leg, and it is a little better now. I had shortness of breath because of all the extra weight I was dragging around in my leg. Today I am able to do the things I always do, and I don't feel shortness of breath. Thanks for your support You are a doll. Hugs, Kate
0 -
Kate just be very careful with that swelling. Especially when it is accompanied by shortness of breath. I know how much fun you are having and that is fantastic, but keep an eye on the leg closely. Any more breathing issues I really think a trip to the ER would be a good idea. Especially since you are flying Sunday.
Enjoy that family, I know you are having so much fun with everyone. Have fun but be careful and check the progress of the swelling today. Please just don't let it get out of hand, okay?
0 -
Hi Lemon,
Thank you so much for your concern. I took a water pill and elevated my leg last night and it is a little better. The shortness of breath was only because of
the extra weight I was carrying around in my leg. Today I can do the things I normally do, and I don't feel shortness of breath. My mo emailed a little while ago telling me to stay hydrated, and that every hour I should get up and walk around on the plane, tomorrow.
It is very sweet of you to be concerned about me when you have issues of your own, and I appreciate it. Your support means a lot to me. Hugs, Kate
0 -
Hi Sew,
Please read the post I just wrote to Lemon it explains how I am doing today, and what my doctor says.
You are right I can definitely learn from runfree, because I do not like to ask for help. As I mentioned my plans are not cut in stone, and I will have to change plans as the needs come up, and who knows maybe I will get the courage to ask for help.
Thanks for your support you always have such intelligent advice. Hugs, Kate
0 -
Hi lemon,
I am so glad that you feel good enough to want to wear a bra today. I totally understand your excitement about that. Hugs, Kate
0 -
Hi Janis,
I will be very careful and check the progress of the swelling. Right now everything is ok. I will be with my children in about an hour. Godforbid if anthing goes wrong I will ask them to take me to er. Thanks so much for your concern. Hugs, Kate
0 -
Kate, gosh, what a crazy development! I'm so glad your leg is better today, and I'm glad you're going to get it checked out soon. I hope it behaves itself until you get back to CA.
Flooded basements--no fun! Been there, but not as bad as these cases. I hope that gets resolved fast.
MostlySew, thanks for the cheers about my driving plan. I would have been WAY too shy to ask. I am kind of a complainer, but I'm terrible at asking for actual help. My friend/colleague offered to coordinate the calendar. After I drove myself one day and struggled mightily to stay awake at the wheel, I went back to work and said to my friend, "OK, let's do the calendar." All I had to do was post about it on Facebook and ask people to contact her, and I think she emailed some non-FB folks. She sent everyone instructions and directions to my house. We keep the calendar on Google Docs so we can both edit, and there's a backup list for when people need to bail out. I work on a college campus, live in a friendly small town and know the parents of my kids' classmates, and go to a church with lots of people older than I am. Added up, that's a lot of people, and many unfortunately have experience with cancer and are happy to help. My mom and sibs live too far away. I am thinking I'd like to throw a party in early June for all my helpers (who don't all know each other). I want to hand out little badges--car shape for my drivers, meal picture for those who made or bought meals, vacuum cleaner image for some friends who paid for house cleaners, big ear for people who listened to me gripe. That's as far as I've gotten with my party vision.
No compression sleeve, but my PT and I talked about it. I have two more PT sessions scheduled, one each week. My bug bites seem to be on the mend today!
0 -
Well my dreams of having some support for my girls quickly ended.
Just not ready yet but I did try, I didnt make it out of the bathroom its still too seepy and swollen. I have small D's or big C's and my rads side is huge!! I thought the radiated side was going to shrink or does that come later? Your right Sew where else can we talk so freely about our personal parts? I do feel so much better each day. Janis thanks so much for sharing what you went though, it is really helpful to me. Now if Mother Nature would give me some nice weather I would really be happy. 35 degrees and snow flurries this morning, Where is Spring?Kate- I am glad today your feeling better, keep a close eye on it. Theres got to be a reason why this keep happening, I know you reported it to your MO, hopefully he will help before the chemo. Hate to see you have any other issues during that. Enjoy the family today, I know your trip has gone fast. Hope there is some sunshine in Chicago before you go, Spring hasnt found it way there either!
0 -
Run Free good for you.I am shocked at how many people you found to help you.That's great!My mom and my sister that lives in town have cooked meals for me at least 1 a week.My mother in law was picking up my daughter from school until her knee surgery.She has a severely handicapped son and has to transport him in and out of the house to the car in order to pick her up so she's not able to help.But my daughter's friends mom gets them from school on certain days that my mom can't.It helps a lot when you work full time .
0 -
Home from my dad's finally with REAL internet and a keyboard. My "smart phone" is not anywhere I like to type from that is for sure. I have no idea how people text all day long. My eyes can't handle all that small print..lol
Ok, of course you all know that my DD is safe and that they got the bomber. I am so relieved and happy they took him alive so maybe he could shed some light on why this happened although we have our suspicions that big brother kind of sucked him into his world whatever that may be. So unreal!'
Kate, I feel as though I need to address your issue first. PLEASE get your leg checked before you fly out tomorrow. Blood clots are nothing to mess with and a flight could land you in big trouble. I know you know your body but better to be safe than sorry! A quick doppler on the leg and they can tell if there is a clot. Glad you are having fun with your family and sorry the weather was so uncooperative!
Janis, I will keep you in my prayers that the lump is just one of those pain in the rear end lumps we get from time to time.
Lemon, so sorry that the new bra did not work out and that you still can't wear one. I am nervous about rads but I hope that I am blazing a trail for women with early stage breast cancer in the future so that they can all be done in one week.
I met with the RO on Friday for my final set-up appt. I am marked and ready (with a sharpie..lol) and even though I had tatoos back on April 1st, I guess they still do an X marks the spot. I have creams. I have soft sports bra. I have bad news.
The bad news is that they could not keep my entire heart and left lung out of the field.
No amount of breath holding could do it either since my lumpectomy is on the medial side at the 9:00 position. The good news is that only the peripheral rads will nick both of them and only a tiny little corner is affected of both my heart and my lung. The diagram the rad nurse showed me shows a concentrated amount of the rads with be on the lumpectomy site and then some weaker waves moving outward may skim the heart and lung. It will not be getting the full brunt though and the RO did not feel it will cause any problems down the road. Of course she couldnt guarantee that, but in all the years she has been an RO, she has not seen anyone with my small amount of rads that are skimming it have any issues at all.So, off I go into the great unknown. They feel I may not have many if any skin issues until AFTER I finish and then some of the women in the trial have had mild to moderate burning on both the breast and the shoulder blade. Most women in this trial have reported mild to moderate exhaustion about 4 days in and it lasts for about 3-6 weeks she said. So, that has been her experience with the trial.
Gonna cook dinner for the hubs. See you all later and I will get a chance to catch up better as I just skimmed everything for now.
0 -
Wow, RunFree, what a wonderful community you live in! And what a good deed you did in making it possible for all those loving people to help you. I love the party idea too--especially the picture of the big ear! I guess for my friends, I'd need ears the size of my house!
Kate, I sure hope your leg is behaving properly and the rest of your wonderful family visit will be all smooth sailing. I wonder whether your wonderful MO might think a lymphodema therapist could help with some ideas for keeping that fluid where it belongs?
0
