Starting Chemo in Nov. 2011...anyone else?
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grandmaV, how are you feeling? have you made an appointment for a second opinion yet?0
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YaYa , I'm about the same. I had my grandson 2 nights and days this week (He's 7),and was able to get my mind off of cancer and treatments for a while. It felt good to be normal for a couple of days. I got a weeks worth of exercise in those 2 days. The tinnitus is a little worse this evening, but I'm also exhausted and they seem to go hand in hand. I called my onco's office Monday, but onco was out of town til today and they called and said they're making the appointment, but I don't know when the appointment is yet. I'll call them tomorrow and see if they got it. I'll probably call the BS tomorrow too, to let her know what is going on and to see if I decide not to get radiation if she would be willing to do a mastectomy now and get that ball rolling so she can schedule the surgery soon. I've been reading a lot on the prone position (on your stomach) for radiation, and that would be my preference, but there aren't a lot of places that are set up for that. It minimizes the exposure to heart and lungs. The beam does not pass through the lung like it does in the conventional radiation position. That's the way I prefer, but I'm not sure it's offered here. So things are still up in the air. The RO that I spoke with last week said that you can do radiation up 6 months after surgery, following chemo. I hope that was a correct statement. I just can't see laying there for 6 weeks, knowing they're damaging my lung every day. They try to downplay the side effects to the lung and say it's rare, but that's what my onco said about tinnitis too, after I already had it. Besides, the effect to the lung can take 5, 10 or even 20 years to present itself, and I plan on being around at least that long if not longer.
Thanks to everyone that expressed concern for me, it is appreciated and helps so much.
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grandmaV, you're doing a lot of research and that's a good thing. i like the way you take care of yourself and your health. let us know what you find out and what your plan is. i think about you daily.0
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Andimom ~ I totally agree. We need to be kind to ourselves on this crazy road of cancer treatments. For crying out loud, I'll consider myself a success if I get through this with my sanity in tact!! As far as eating healthy goes, I was always a veggie person before, but I find it harder to work them into my diet while on chemo. My brain screams out for stuff with a lot of flavor (cuz most everything seems tasteless to me), which usually means cheeseburgers, Chinese food, pizza, etc. I'm forcing myself to eat veggies, but they don't go down as easily as I'd like them to. :-\
Phyllis ~ I say go get the brownies! Haha! I have craved red meat and milk...MILK of all things? I was never a milk drinker before, but now I drink a giant glass every day. I recently found out that my super low red cell counts were, in fact, due to low iron. I think my cravings have corresponded with what my body knew it needed. Although that doesn't explain the chocolate covered raisin cravings.
Yaya ~ I've heard lots of people talk about potato cravings. I just have not had those at all. I thought for sure I'd want mashed potatoes like mad, but so far...no deal. Chemo is the weirdest thing ever.
Keep the faith ladies!
Sandy
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GrandmaV ~ I am due to start radiation after chemo around mid March. I am really worried about heart/lung damage as well. I know you've been doing some research on this...can you point me to any good sources of information that you have found? I'd like to go into my RO appt (March 12th) armed with as much info as possible. I applaud your strength and that you are taking charge of your own treatment. I really believe that the best treatment is the one that you know is right for you.
Hugs,
Sandy
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Depression has hit me BIG time today. I cannot seem to do anything but cry. I went to a Look Good Feel Better program yesterday and thought it would do wonders for my self esteem. It made me feel worse. I haven't been able to look at myself in the mirror since I lost my hair. I thought I could handle some things but I really am not well today.
I have been looking at my mastectomy scars lately when I get out of the shower. I think I am crying for all I have lost. When I look in the mirror, I see my mother. A lot of people call me brave and strong and I am not. My family and friends don't call or visit. I spend 5 nights a week alone. Well, I have my cat but she doesn't talk too much. I have learned that everyone calls and stood with my when I was first diagnosed but I really need them now. My husband cannot be here in the evenings with me and right now, I really need him. The doctors just want to give me a pill but I need people. Oh, I cannot wait to begin my "new state of normal!"
Thanks for reading and listening. If you have someone with you tonight, hug them tight and be blessed they are there for you!
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Sandy, I found a web site of Arizona Breast Cancer Specialists:
http://www.arizona-breast-cancer-specialists.com/brachytherapy/all-about-what-is-brachytherapy.html
Dr. Robert Kuske helped to invent many alternate radiation treatments of Brachytherapy. Watch the video it's very interesting.
Also about the prone position:
http://www.igrt.com/prone_breast_radiation_therapy.asp
The third is hypofractionated radiation therapy:
http://www.nejm.org/doi/pdf/10.1056/NEJMoa0906260
This is a 3 week schedule of whole breast irradiation, but they would still get the top part of the lung.
It's funny that no one told me about these options. It may be because none of them are offered here. That's what I'm going to find out. We can't afford for me to travel anywhere, so I'm stuck with what's available here.
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YaYa, are you finished with rads?
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Beth - I am crashing again from the December group. My heart goes out to you. My DH has been working evenings this week and I have been terribly lonely too. I am sending a big HUG to you. You don't need to be strong and brave all the time, allow yourself to cry as often as you need it and reach out to everyone you can. And remember, we are all here for you, going through it with you!
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Beth-
We are on the same tx plan & schedule. I just had my tx #22 of dose dense taxol. Just 2 ,ore to go- Yippee!. I have also been depressed and cry a lot. I am away from home having treatment & my dh travels away sometimes- so I find I am alone more than I would like.
When this journey started in October 2011 with a BMX & TE my dh promised he would not leave me alone on my entire journey. At the beginning he flew in either our son daugter or his sister----needless to say that has fallen by the wayside. He believes that I am so strong & doing so well that I can now be alone.
As a matter of fact, we are now in joint couples counseling since we seem to be drifting apart. As it turns out he thinks that I am too involved in this "cancer thing" and he doesn/t want to hear about it over & over again. He also believes that if I talk cancer with my friends that I will lose them to. I must admit the phone calls from my friends have dwindled since October. Perhaps he has a point.
The couples counseling has helped me since at every weekly session I break down and cry (for most of the session). I did not do much of that before; it seems as if I am now acknowleding & grieving the loss of my breasts, hair, and lack of attractiveness. I am also grieving the soon-to-be (after rads) loss of my reproductive organs (uterus, overies & cervix).
So Beth don't be too hard on yourself for crying or missing people. It is all part of the greiving process. Not only our body image but also learn the betrayal of false friends.
This is a safe place to expose our vulnerability with all our warrior sisters. We are all here for you; you are not alone.
Gentle Hugs-
Rose
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grandmaV, i had my last rad TODAY!!! i was so happy to walk away from those people. i think my radiologist is not the sharpest knife in the drawer. she's very scattered and i wouldn't go back to her if i had to do it again.
beth, i live alone and have experienced some of the same feelings you are having. my daughter has not been available to me at all although she lives less than a mile from me. in fact, she's been angry with me most of the time since my dx. she likes to say, 'it's always about you, mom. ' ouch. her emotional distance has been the hardest part of this journey. i hope you get some relief from the depression. i wish we all lived close to one another ... then it would matter about friends and family. we'd be with people who truly get it. hugs to you.
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Congratulations YaYa. I'm so happy for you.
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I am sad to hear about the depression-- how could you NOT go through all that with the chemo running through our veins. You are not alone....
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Beth, Rose, and YaYa - I really understand how you feel about people acting so concerned at first, then not even calling later on when you really need them most. I didn't tell anyone right at first (except my husband, who I had to tell - he knew about the ultrasound, biopsy, etc. and heard me on the phone when the call came in with the results.) Then my daughters had to be told because they asked how had my mammogram gone - they knew I had an appointment. After a few weeks when I felt like I could actually talk about it, I told my 4 sisters because I wanted them to know to protect themselves as much as they could. Now, I know all of these people love me and are still concerned for me, so I am trying to understand their seeming lack of concern 4 months after my diagnosis. I have reached a few conclusions that have helped me come to terms with it. Maybe they will help you.
First of all, I think it is hard for any human being to maintain a high level of interest/concern for a long period of time. I think they struggled with the diagnosis in the beginning and were driven by their emotions to do things to help or show their feelings. I got flowers, a fruit baskets, fudge, random candy bars, and cards. I got visits, phone calls every day, even from a sister who lives far away, and one call each from 2 sisters who live far away that I haven't seen in about 5 years and never talk to on the phone. All of that has dwindled to no gifts or cards, fewer calls mostly on the 3 worse days from 2 of my 3 daughters, and only one call sometime after each 3 week cycle from only 1 sister, the others no calls. One sister does email and says she hopes I am doing well and to take it easy, but if I try to tell her specifics about the side effects or treatments, she doesn't respond to any of that, just wishes me well.
The second thing is that I think they assume that the cancer is being treated, cured, and that I really will be fine from now on. I certainly hope this is the case, but we all know that we will never be able to have another mammogram, CT scan, bone scan, or any other cancer related procedure that doesn't send us into severe panic mode. I don't believe anyone who has not experienced this for themselves can appreciate the severity of living with the fear of having the cancer return, especially after all we have been through to this point. Only we know the extent of what we have gone through and are still going through, and only we can know what a future recurrence would mean to us.
The third thing is that we have probably downplayed our illness as much as we could to keep from worrying our friends and relatives. This may have seemed like a good idea, but it caused our loved ones to think that we could handle it all. They also probably assume that we are "used to" it all by now and are not as strongly affected as in the beginning.
I don't mean to infer that it is okay that these people not try to take better care of us and be here when we really need them most, but maybe if we initiated the calls and asked for things from them, they would try to help us more. I did imply to my daughters that I would like a celebration for my last chemo treatment (tomorrow) and that if they wanted to celebrate, we should do it before the treatment because I would not be able to eat after it. Once I suggested that myself, they got busy and planned a dinner at my favorite restaurant and ordered a "Congratulations Mom" cake with little pink BC decorations all over it, and it was last night as I had asked while I could really enjoy the food.
Rose - I have thanked my husband several times for being so thoughtful and taking care of me during all this, but it is really just to reward and reinforce his actions. I honestly think what kind of husband wouldn't stand by his wife in a time like this. I don't mean to criticize. I know you have your hands full dealing with all this. And I do think all the things I talked about in the earlier part of this post apply to husbands as well as other loved ones and friends. But I am wondering if you are really clear with him about what you need from him. Also, if you are seeing a therapist, I would think that he/she would be busy pointing out to him the depth of how much you need his support right now and how inappropriate it is not to give it.
YaYa - I am truly puzzled by your daughter's actions, but since you said she has been angry at you every since you got the diagnosis, I wonder if she is worried about herself and the prospect of her getting breast cancer since you have it. She may not know how to handle this and may sort of blame her increased chances of getting the illness on you. Of course, that doesn't make it right, but it may help explain her reluctance to come over and help out now.
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You all are certainly not alone. I feel torn sometimes cause I want time alone and then am bored or lonely when I am alone...or not great company if someone is with me! We all need to give ourselves a pat on the back for getting through each day sometimes.
Beth, this is definitely a grieving process. There is so much wrapped up in it and things can move so fast, that we really don't process it. Give yourself time. I've had a lot of people tell me how cute I am with my bald head and hats. And I'm glad...it isn't as bad as I thought. But it's still not 'normal'. I look at my scars and hope the reconstruction goes well. But underneath it all, I know it's what is in my heart that counts. That's me. And that's you too. We will get past this and be stronger because of it.
Yaya5, I am so sorry for your daughter's reaction. How hurtful, when I know we all would LOVE it to NOT be about us for a change! This is a high-maintenance time of life! We are all here for you!
GrandmaV, I have not even met my RO yet and have a list of questions, thanks to you! I never even knew esophagus and lungs would be at risk. Haven't gotten quite that far. Thank you for your diligence for yourself and for sharing with us.
Sleep well...I can hardly keep my eyes open today. Never felt fatigue like this in my life. Weepy, from steroids too! What a joy I am to be around!
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bahamamom3- Many thanks for for sharing your experience and the thoughtful comments. And most of all---congrats on your last chemo tx!
Sending love & hugs your way-
Rose
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Andimom, I wish I had known more about radiation when I made my decision last October. I would have made a different choice. Another thing to ask about is if your cancer was in your left breast there is also risk to the heart. Mine is in my right breast and my heart was not in the radiation field. I'm still not sure what to do at this point. I've been reading the posts on the "radiation recovery" thread, and it seems like most women don't notice any problems due to the top part of the lung being in the beam, but I'm worried because I already have some lung problems, seasonal asthma, and prone to bronchitis and pneumonia. My husband and son want me to just get the radiation and get it done, but my daughter feels the same way I do. It's such a hard decision. I may know more after I meet with the second RO.
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been thinking again-- uh oh--
I hear alot about what happens to us while in cancer, all of our sadnesses-- all of which are totally true but there is another side to it all-
what can we gain from having cancer?
Compassion-- we know first hand what it feels like to have a body that is old, infirmed hurting aching.... and on. It really is the human condition to experience this at some time in life although we only expect it at old age, it does happen and frequently by other situations other than cancer.
We can, first hand, feel the pain of a mother who has lost her child, we can feel the pain of someone in a car accident, trying to walk again with a cane or the difficulty an 80 year old feels getting out of a chair. Compassion is a gift to ourselves. It makes us peaceful and it makes us gracious and it makes us grateful.
Strength-- oh my goodness-- where to start. We have the opportunity to see just how strong we really are--that deep kind of strong. And the best part of that is the inner knowing of it all!!!
It allows us to ask things out of ourselves in all areas of our life.
Knowing -- we know... we know... we know exactly who we are!! no doubts.
So, I am very grateful. Q
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Q, are you channeling me...yesterday hubby and I were talking...he said something about "is there a silver lining in all this?" I said that I have even more compassion for those who have gone through a dx and tx more than ever before.
Funny, though, i forgot about strength. I already felt I was strong, having lost my late husband to this damned disease. It's like--universe? Really? How strong are you really going to require me to be in my lifetime? Wasn't that previous loss enough for me?
Anyway. Hugs to all of you strong compassionate graceful ladies...
XXOO
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Thank you all so much. I just couldn't get it together yesterday. I finally took a Xanax, took a shower and fell asleep. I realize that I am going through a grieving process. My mother being diagnosed in 4/02 and losing her in 1/03. My father being diagnosed with lung cancer in 3/03, colon in 2/07 and liver in 10/07 before losing him in 11/07. I was diagnosed the first time in 6/08. I haven't had time to grieve the loss of anything before I have been hit with something else.
I haven't met you personally but I love and admire each and every one of you!
Blessings,
Beth
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Aw Beth, you have been through the wringer. Bless you for keeping it together at all. Glad you are feeling a little better today. The love and admiration are mutual.0
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Beth ~ I am so glad you are using this forum to vent and be honest about how you feel! Keeping it all bottled up is not the answer. I found out the hard way on my 2nd infusion of chemo...I felt very emotional (like I was on the verge of tears) for several days, but held it in, so as to spare my family. I finally "got it together" enough to go to church one Sunday and as soon as the praise and worship music started, my tears began to flow. I could not get it together to save my life. I quickly left the service and sat outside where I could hear the sermon on a speaker. I sobbed through the entire thing, for like an hour! I learned from that experience to cry when I need to, whether it is "convenient" for everyone or not.
I am so blessed with a DH, but I am aware that it must weigh on him that our lives have become "all cancer, all the time" since my diagnosis on 8/5/11. He doesn't complain, but I agree with Bahamamom that it is just hard for people, even loved ones, to maintain the high level of care, concern and effort that we cancer patients, require. I do my best to be as low-maintenance as possible, but the truth is I am high maintenance right now!! I'm sick of it too! This is one reason that I love this group so much...none of us has to pull any punches with each other.
GrandmaV ~ Thank you SO MUCH for the links and research and information you are sharing! I would not have had any idea what to ask or what concerns I should have. I feel so much better being armed with these ideas.
Keep the faith,
Sandy
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Claireinaz, I just came across your sharing info thread re runny nose and eyes and decided to reply here in case anyone else is having a similar problem. I'm 3 weeks PFC, 4 rounds of Taxotere and Cytoxan. I too have been having a real problem with watery eyes and a runny nose since round 3. My onc said excessive tearing was a side effect of Taxotere. I see you are on Taxol and both are from the Taxane group. My onc sent me to an eye surgeon as I was afraid of scarring of my tear ducts. He tested the patency of my tear ducts (ouch!!) and told me that if there was a blockage it wasn't 100% as he could get some fluid through the ducts. He prescribed steroid (hate that word
!) eye drops and told me if they didn't improve to come back in a month. That was two weeks ago and I've only been using the drops for about a week. My eyes are still tearing, especially in the mornings, but it's definitely getting better as they were literally pouring and I could hardly see. I hope yours clear up too after treatment.On another note, is anyone suffering from fluid retention on Taxotere? I am retaining fluid and have been put on a diuretic. It seems to work but as soon as I stop taking it I start retaining fluid again. My NP said it could go on for several months, bit I'd like to be able to fit into my jeans again!!
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GrandmaV, you've been in my thoughts. I'm sorry to hear you've been through so much and I sincerely hope and pray things improve. All the best with your RO second opinion. I hope you get some honest answers and reassurance. Good luck with your decision regarding ongoing treatment options. You are not taking this lightly and I am sure you will make an informed decision that you feel is right for you. I am on fourth day of rads and so far so good. I was very nervous going into it and was starting to have second thoughts but I really like my RO and trust her. That confidence in our caregivers is so important. Wishing you peace and healing. xoxo
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Q
That was beautifully uplifting, this has been an emotional week. I was so happy to be through with AC, then taxol is good not alot of problems but emotionally I hit a low. Trying to pick back up,need to get out my meditation books, any suggestions going to book store with kids this weekend.
Love to all have a great weekend!0 -
GrandmaV, it is (WAS!) in my right breast. Thank you again for the wisdom and suggestions.
Q - absolutely lovely what you wrote and I agree. I would never hope to go through this, but am trying to glean any lessons I can learn. Our family has helped with families affected by disabilities for the last 7 years and they are some of the most precious people and we have learned so much from them...I pray this situation adds to my ability to serve them. We will get on with life...this is a marathon.
Sandyland...your high maintenance comment reminded me of a funny line I said to my oldest the other day. I have a leather chair that has a quilt on the back of it and whenever the quilt slides off, my bald head sticks to the leather, especially if I am having a hot flash! That happened the other morning and I commented on how frustrating it was while bouncing my sweaty head off the chair...she just started to laugh and I looked at her and said, "What?! I'm at a very high maintenance time of life right now!" Apparently, it was funny enough to send as text to our son away at school...gotta laugh about stuff!
I pray we are all encouraged and strengthened by what we share here. I am. It's been a rough 3 days after my last A/C so it was good to check in here tonight.
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Tipnas, I was so worried about my one eye tearing all the time that I went to my eye doc and he screwed around with it (that was fun--not) and said it was a blocked punctum (tear duct) recommended I have some outpatient surgery to unblock it... I think I'll wait till my taxol infusions are all over before I even consider surgery now that I know about this eye-watering thing. I did have plugs put in my eyes a long time ago because I had dry eye syndrome....could be one stuck in there still. My eye started watering long before taxol and got really bad on AC tx, so it could be chemo related. My onc. doesn't want me to even consider this minor eye surgery until I'm all done with chemo anyway, so 'll have to endure the tearing and dripping. My eye doc didn't give me anything--I tried taking a claritin thinking that might dry up my nose and eyes somewhat and didn't notice any improvement, really.
I believe I'm retaining fluid too. I've gained 5 lbs since taxol, haven't eaten any more than I did on AC and am a bit more active. Nurse said that the meds including taxol can cause fluid retention.
FEeling pretty disheartened today. Like I'm never ever going to look or feel normal again. I just read a thread about all these ladies whose hair grew back in Taxol; I'm just done with tx 5 with 7 to go and I see NOTHING positive in the hair area yet. What's worse, I'm starting to lose it quickly in other places and look like a pre-pubescent androgenous baldy now...
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Claire- the hair will come back! I have seen a small amount of growth in the fuzz that never fell out, but no new growth..hang in there. I feel your disheartened attitude..I feel the same way..like I well never be a normal human being again.
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ClaireInAz-- my friends tell me my hair in the back is coming in--in the bald spots i had--but I really can't see it...maybe there is some fuzz??? I can wear a hat and look medium ok. Your hair will come back--just maybe not in your timetable!! I don't think chemo wants to be our friend-- it doesn't play nicely with others in the sandbox!!!
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It has been a long time since I have visited and could spend days trying to read and see where everyone is with treatment and compare my experiences. Instead I read the last page and wonder why I stayed away so long trying to cope alone.
I do have a lot of friends and family that check in and found that I am the one that doesn't respond. I don't want to talk about me to them anymore since it is the same 3 weeks of crap and then do it again. I likened my SE to a super hormonal pregnant woman. I am not the happy, positive person reassuring everyone that I am fine these days. The good news is that I finished my last of the 4 chemo TX and will begin radiation on 2.13 for 7 weeks. The bad news is that I am about 15-20 lbs heavier (some of it water), I have random bumps around my neck, my nails are disgusting and of course I am still bald. My food choices are terrible for about 2 of the 3 weeks when everything tastes different and I have more gas than my husband which I thought was impossible!!! I feel gross and have not had any romantic contact since before I was DX in September. My poor husband doesn't complain but I have zero libido. Not sure anyone could during this. I am anxious to see what radiation has in store for me.
With everything else that we are dealing with, life continues to be complicated. Work is stressful while my coworker is out 2 months early on bed rest, my mortgage increased astronomically due to an ARM, the bills pile up and we lost a very close relative a couple weeks ago to lung cancer. I don't sleep well and wonder if one day I am just not going to make myself get out of bed. Praying that I am able to continue to work and keep myself together until I get to the end of this process. Not too much longer :O)
It is a nice relief to have a place to put my thoughts, true feelings and even complain if I need to. This feels like therapy!
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