<p>My friend swears that Neulasta shot made her more sick than the chemo. She started treatment at a nearby hospital and switched midstream to MD Anderson and the MDA docs actually backed off of the Neulasta until her later chemos. But, every case is different so I’m sure there is no hard and fast rule about any of this. (My friend has late stage 2 -early stage 3 invasive lobular carcinoma, mass removed measured about 5 cms…and after chemo, radiation and surgey, will be looking at an expected 90% chance of NO recurrence. Hallelujah. Medicine is amazing.)</p>
<p>Sounds like Ellen is handling things very well…I’m so glad…and I now know I have no excuse for letting dust collect on my elliptical trainer…lol! </p>
<p>Thank you for the update! Please keep 'em coming!</p>
<p>Because some people have asked how I am doing, I thought I would send an update. I seem to be past the worst of the first chemo recovery time and I am feeling like myself. My daughter in Italy sounded happy this morning when I talked to her and they are all having Thanksgiving dinner together tomorrow at the program director’s mother’s house. (it is still wed. here). We leave for Florence in just over 3 weeks. I can’t wait. I just have to make it through one more chemo treatment next week but I should be feeling at least mostly human before we go. Thanks for all the good wishes and energy.
Ellen</p>
<p>I am so glad that the worst seems to be over as far as the first chemo treatment is concerned. I hope all goes smoothly with the next one and that you are feeling well by the time your trip comes around in just THREE WEEKS!!! I’m sure it really cheered your D up to learn that you are feeling like yourself again. I hope she and the rest of your family have a happy and peaceful Thanksgiving. </p>
<p>Dear Mini and Ellen: I am thankful and heartened to hear that you have weathered the first rounds and now face only the last round before the trip. Lovely to anticipate your happiness with family in Florence coming up soon! Please continue to update us…</p>
<p>Just caught up on this thread. So sorry to hear of your illness. Best of luck with our treatment, and have a wonderful time with your family in Italy. Be sure to eat lots of gelato. It cures anything!</p>
<p>Oh, Ellen, I just found this thread. I’m so sorry. Prayers for your treatment.</p>
<p>As to your question…I don’t know. I’ve run the thought experiment in my head and I know that while I wouldn’t be so fatuous as to tell my D not to worry about it, I would be encouraging her to buck up and stay focused and to assure her that if a crisis were approaching we would let her know in time to get back, that the best thing she could do for either one of us was to keep on keeping on. Knowing my D, she’d be aggressive in leaning on her network of friends.</p>
<p>Ellen and David-
My thoughts and prayers are with you. I am a 3 year survivor of an aggressive form of breast cancer. I know what you are going through. The good news is that we have so many amazing advances occurring in treatment on an almost weekly basis. Also, it sounds like you have a wonderful support system. </p>
<p>Personally, I wouldn’t push your d to share more of this than she wants to. I feel each person handles this in their own way and in their own time, and should be given space to do that.</p>
<p>One of the best websites I found, bar none, was at <a href=“http://www.breastcancer.org%5B/url%5D”>www.breastcancer.org</a> .It has discussion boards arranged by topic, very similar to the format of this website. You could go on there, post your questions, and have answers in minutes on any bc related topic. It also has “technical” information about all aspects of diagnosis and treatment. It is headed by Dr.Marissa Weis, a very compassionate oncologist.</p>
<p>Give yourself permission to take care of yourself and only do what is comfortable for you.
Sending gentle hugs your way.</p>
<p>Thanks, Tdad and all. Spoke with D. today in Florence, and she seems to be doing great. Had Thanksgiving at the home of the mother of the head of the program (after they all got semi-lost on a bus.) She is headed off to Bologna this Sunday to the Friends Meeting (it is the only one in Italy.) After spending 10 days with us, it looks like she is planning to spend 10 days in Athens and maybe Crete.</p>
<p>We got back from the oncologist this morning. Weathered the first rapids. We have a rather complete armamentarium of interventions for nausea, pain, and sleeplessness. Went to a friend’s house for Turkey Day, and I managed to make the famous oyster dish, which Ellen said tasted just like the one from her childhood (doubt it - these were west coast oysters). One more chemo before Italy. When we get back, it is likely the chemo regimen will change some: there is a regimen now used in Europe/New Zealand/Australia which is showing better results than the standard American one, and since it is just an addition of another drug to the standard, the doc thinks it is worth it, provided white blood cell counts hold.</p>
<p>I will be in DC this week, both as part of my work, and giving two homeschooling lectures; Ellen’s mom will be here during, at which time the Meeting barber will give her (Ellen, not the mom) a buzzcut. </p>
<p>Ellen, you seem to be doing so well with this part of treatment! Great job! And the food you are eating sounds amazing. It’s making me hungry. Good luck with the weekend coming up. I’ll be praying you are comfortable.</p>
<p>Ellen and David–you are such a great team–truly an inspiration. I am thinking of you a lot. </p>
<p>Florence is such a wonderful city–so beautiful and full of art and history, and yet so very human in scale, so approachable. I hope that you have an inspiring, healing and wonderful time and I am glad that you feel up to going. Your daughter will enjoy showing you “her” Florence but mostly, whether at home or in Florence, she will be so happy to be with you.</p>
<p>mini and ellen - I have been reading this board and mini’s great advice for a while, so forgive me if I sound like I know you…Ellen, it sounds like you have great advice and will do well in Florence - you are so wise to think through what your daughter will be feeling. After chemo round 2 you should be great to go. I found that my strength came back really quickly at first and that the interim “short” sessions didn’t bother me at all compared to the main every-4-week ones. On the other hand - rmember the gellatto suggestion! If your mouth and tummy hurt, that’s the way to go.
Hang in there - the trip will be worth it!<br>
PS - glad you found a wig that you liked. I’m not a hat person so wore mine for the duration unless I was at home. Can’t count how many people told me that they liked my new haircut, never knowing…too bad my real hair won’t do the same style!</p>
<p>Ellen,
I am sending positive vibes your way as you go through this challenging time. I just got home from visiting our daughter who is also abroad in Florence and just read this thread. I think your visit to your D in Florence will be terrific “medicine” all the way around. I hope at some point during the year, your D can make one visit home to you too. It sounds like all of you have support systems and it will all help you to get through everything. Wishing you all the best. I am glad you have the upcoming trip to look forward to and it will be very special indeed. It was for us and I know it will be for your family. A trying family experience is hard for the college student who is away (we had such an experience a year and a half ago) but with frequent communication, it helps. </p>
<p>Having just read this entire thread, I want to send thoughts to several who have shared their own trials and tribulations with cancer of their own and/or family members. Same with atomom about her stillborn baby. My heart goes out to you all. As well, having gone through a scary time with one of my daughters, I have to say the CC community was a wonderful support at the time, even though I haven’t met most members in person. So, Ellen, keep us updated as there are lots of good vibes being sent across the miles and I’m very hopeful for you, though am sorry you have to go through this experience.
Susan</p>
<p>Hi Soozievt,
Thanks for the note and the vibes, we can use all the good vibes we can get. Though sometimes things happen to remind you that your life is tough but stuff happens to everyone and we are all resonsible to care for each other. We found out from a member of our Quaker mtg, that another member had checked herself into a psych unit because she was feeling suicidal. They have 5 kids and the husband has been deployed to Iraqi more than he has been home in the last 5 years. He is currently deployed and not scheduled to get home until summer. We are currently out of the loop of who gets called on for help, due to my illness. Care has been arranged for the kids in their own home, but the mom is worried about the kids. We realized that we had the oppurtunity to share some of the care we have been given. D2’s gym team parents did a session at Dinners Done Right for us. A lovely gift, even though mini is the primary cook in the house and he likes to cook. So we have a freezer full of meals just the right size for this family. We are passing most of them on and given the number of miliary families at D2s gym I am sure the will understand. I sure hope so because we would have had to work really hard to use all that food, D2 rarely eats “meals”, most of it was heavier food that I feel like eating these days, and DH loves to cook. It feels great to have a way to help, taking care of the kids is beyond me at the moment.</p>
<p>I assume it is your D1 who is in Florence, how long is she there for? I hope you had a wonderful visit. Ours is there for the year and may stay into the summer. She might come home to visit later but DH suggested we might be able to go visit her again. One of her closest friends from school is spending spring term in Prague so I hope they make arrangement s to get together. When I wrote the orginal note, your family was one of the ones I was thinking of, even though D1 was not that far away at the time, I am sure it was very hard on her.
Ellen</p>
<p>Just to add (from the lesser half): I am so happy to make good use of these meals! They are sitting there in the freezer, and I can’t imagine I would have ever used them, though we are very thankful for the thought. The army base had placed the kids with another family for three days, during which time they were barely fed, the baby was never given any milk, and no one from “military social services” (an oxymoron if ever I’ve heard one) had checked in on them. (I have more to tell, but my blood pressure will go up more than I’d like at the moment.) Members of our Meeting who are also friends with the family have brought the kids home and are caring for them at their home. Meanwhile, our friend at the hospital (who was also 20 years in the military) would like to come home, but they won’t discharge her over the weekend because there is no psychiatrist to sign the discharge papers. Sigh. We are hoping the Marines will have the good sense to bring the husband home.</p>
<p>Meanwhile, another friend (not a Quaker, but a homeschooler) got burned out of her house with five kids on Thursday. They are all okay, though living in a hotel. Gives us a good excuse to go through all the clothes that the kids have outgrown! </p>
<p>I’ve been away for a week, and just now reading this. I am amazed and warmed by the support you have for each other. I wish you both strength and peace.</p>
<p>I know of several similar situations (concerning the OP question), and each has been different. I guess you just have to know your D - does she want every detail and will feel left out or over anxious if she doesn’t get it? Or is ignorance bliss? Is she the kind who will get tired of friends’ questions and sympathy, or will pull strength from their concern? </p>
<p>Giving her permission to concentrate on her schooling and overseas experience might prevent her from feeling guilty for having fun while mom is sick. Giving her specific steps to take to feel part of it - like sending a weekly email, or telling her that hearing about her experiences helps take your mind off things - might make her feel like she has something constructive to contribute.</p>
<p>My prayers are with you. I was diagnosed with a different kind of cancer the summer before my oldest, who is now a college freshman, started kindergarten. Supporting children through this kind of parental illness, at any age, is so difficult, especially when you’re emotionally spent. I very much wish now that I had spoken with a counselor, and that I had made a counselor available to my youngest, who was most deeply affected by the separation that my treatment necessitated. Please do everything you possibly can to be kind and good to yourselves and get your own needs met; it will make it so much easier to tend to the needs of other members of your families if you are a little bit “selfish” in terms of accepting all of the help that is available to you without hesitation or guilt. </p>
<p>I also want to add, on a somewhat trivial but practical note, that if nausea is a big problem, which it was in my case, consider the use of medical marijuana. I don’t post often enough for my personality or style to be know well on CC, but I am not even slightly hip, cool, or countercultural. If my kids started smoking pot, I don’t know what I’d do. But the medication I was given for nausea during my treatment just didn’t work, and had very unpleasant side-effects for me. One doctor suggested marijuana, which was not readily available at that time. We had no idea how to obtain it, and our friends were so straight that one mother I knew who was trying to score some pot for me took her child in a stroller down to the schoolyard of a local high school because she’d heard that dealers hung out near schoolyards! Anyway, a friend of a friend came up with the needed marijuana, and whether it was a placebo effect or not I can’t say, but the nausea lifted with the first joint, and the appetite enhancing effects actually had me eating. Talk to your doctor, obviously, but for me, this was a very helpful option.</p>
<p>Sending good thoughts and prayers your way.</p>
<p>Update from Ellen after my second Chemo. I have chemo brain so this my not make complete sense. (My D2 has sticker on her door, “I am not complete idiot, some parts are missing.”) Right now I am just tired and spacey, I just took a nap, so I am typing spacey emails, which you are getting the benefit of. My mom was here all week and she and my sister headed back to Seattle to see my sister’s family and then fly home tomorrow. We had a great visit, she even made me a big pot of chicken soup.
My wig arrived yesterday, everyone tells me it looks good. I having a hard time adjusting but I am getting there. I decided we needed to name the wig head and maybe the wig. At the moment the head and wig are on top of the TV watching everyone. I am taking name suggestions. My mother suggested Alice from the early 70s movie “Alice doesn’t live here anymore”. Then when I was done with it we could say Alice doesn’t live here anymore. Another person suggested Harriet, but I have an aunt Harriet, who now lives nearby, so maybe not. I was thinking maybe Mrytle and David suggested Marie Antoinette. We could have contest, but I can’t think of any rules.
Thanks for all of your goods thoughts and messages. We leave for Italy 2 weeks from tomorrow!
Ellen</p>
<p>Good to hear from you Ellen! I’m so excited for you about Italy! </p>
<p>I’m thinking that wighead needs to be called ZsaZsa. In her later years, my grandmother had a bad Eva Gabor wig habit…some days she was a redhead, other days a blonde…and she also became fascinated with big dramatic hats, but that’s a whole 'nother story…lol! Her favorite Eva wig was called the ZsaZsa Gabor.</p>
Good luck with the weekend coming up. I’ll be praying you are comfortable.</p>