Starting Chemo in Nov. 2011...anyone else?
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bahamamom, i'm sooooo thrilled with your post. it sounds like your husband is definitely on the up-and-up if he's willing to do what you related. sometimes men can just be clueless! i'm so glad you're talking and that you feel better about your relationship. seriously. i'm so happy for you!
also, about rads, grandmaV and i did not have the same reactions to them. i got really, really burned, with open sores. everyone is different. at the end, i bought a HUGE tub of silvadene that i barely used. if you need it and your RO approves it, let me know and i'll send it to you. it's prescription only and i have enough now for at least three people! i'll never use it. just PM me if you have problems, but i sure hope i don't get that PM!
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Hi All ~ Thanks for your posts of encouragement and advice. Fortunately, my onc is very good about responding to e-mails, so his nurse called me this morning after he ready the one I sent him. I just got back from lab work he ordered to see how all my counts are. In fact, it kind of freaked me out because they even did extra testing for the blood bank, I guess in case I need a transfusion. I am hoping that isn't the case. He requested the tests be done "stat" so I should find something out later today or tomorrow morning. I will let you know what I find out. I so appreciate everyone's input. As always, it is a comfort to know you are there for me.
Quatsi ~ I had to laugh when you said you thought with my issues I must be a solid body type person...I would say you hit the nail on the head. I have only done acupuncture for a shoulder injury and it didn't do too much at that time. The person I went to had come highly recommended, so do you think I may be the type of person who just doesn't respond well to it? i am not sure if I can afford that right now, since we have lots of medical bills, but will investigate. Not to stereotype anyone, but my onc is Chinese and I am wondering how he feels about it? I will try to ask at my next appointment.
Anyway...thanks again to all. Will "talk" to you later. Hugs to all...Linda
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Me again...just got a call from the onc's office that my red blood count is half of where it should be. So they gave me the option of a blood transfusion or to try taking iron, B12 & folic acid to see if the issue resolves. I am inclined to try the supplements first. Anyone else have this issue? If so, what did you do? I have heard that the transfusion would make me feel better right away? Help, please! By the way, the nurse told me that the doctor doesn't usually give the patient a choice and she was surprised. So I asked her to ask him what he would recommend. She said I could always get the transfusion if I decide that is what I want. What the heck? This is one roller coaster ride I am definitely not enjoying! Take care...Linda
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Linda, It sounds like you have a wonderful doctor. I can never talk, e-mail or communicate in any way with my onc in between appointments. If I call with a problem or question I can only talk with the nurse, who acts like its such a bother. Occasionally she will talk to the doctor for me and get back to me. I've started the daunting task of looking for a new onc. Problem is all the good ones are in the same place as the one I have now, and they have the same procedures. I'm seriously considering one doctor, whom I was told helped invent the port-o-cath, but really don't know too much about him, yet. I can't afford alternative doctors either and insurance doesn't pay for it. But we do have a center here that has naturepathic doctors.
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Linda, I told my doctor from the beginning that I would not accept a blood transfusion so he had me on iron, and B-12 from the beginning of chemo. But thats just me.
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I had a transfusion and felt so much better afterward. They didn't give me the option of supplements. It took several hours for the two units to be infused but felt better the next day.
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Thanks guys...just so happened the doctor just called me 2 minutes ago and said if my dizziness was better, he would suggest no transfusion as he said there is a very small chance of catching a virus in transfusion (1 in a million), but since I felt I wasn't as dizzy, that he felt my blood counts should rebound in a few days if I am faithful with the supplements and a good diet (which is a whole other issue not to be gone into here). So, I guess I will just sleep as much as I want (he said that's pretty normal with this problem) and try to get better on my own.
GrandmaV ~ I am glad you were proactive with the supplements and didn't have to deal with this problem. I know I am pretty lucky that at least the doctor communicates with me. I made sure I told him I really appreciate his time and concern. I really like the e-mail thing. I figure then I am not demanding his time with a phone call and he is so good about replying promptly I feel good about our communication...although he is a bit "dry" for my taste! LOL!
Bayareamom ~ I would have gone for the transfusion if the onc really felt it was the best way to go. I am hoping this resolves in the next couple of days. I have places to go and people to meet for lunch!
Again, thanks for the input and support. Have a great evening and I am going to take a nap now and not even feel guilty about it!
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Linda, if you can handle it, add meat to your diet--lean meat. And dark leafy greens. That should perk up your RBC.
Claire
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Thanks Claire. I did eat some chili with kidney beans and lean beef. It's weird the things that seem tolerable when it comes to food. Now chicken is disgusting to me since I had it at the beginning of chemo and felt sick. I try, but it's going to be awhile before I can handle it. I better get used to it since that;s more of what we eat. I remember the nurse at the chemo class saying not to eat anything you love because chemo can kill the pleasure forever if you have a bad experience eating it then. It's true and I found out the hard way! Gonna try some spinach...oh the joys of chemo, it just keeps on giving!
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it's so weird to me that my onco told me that no food would improve my blood counts. i just CAN'T believe that's true. i've researched it over and over, and he's wrong. bothers me that he's wrong. he's supposed to know everything, right? i'm not supposed to be researching this stuff when he's the doctor.
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I read somewhere that navy beans help WBC so my SIL makes me a big pot of them each time I have treatment! Can't hurt!
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Linda, I'm from Ireland and if someone was anemic, the dr would sometimes reccomend a glass of Guiness as it contains a lot of iron. Of course that was some years ago and Guinness is an acquired taste!!! Perhaps it might be better to stick to the spinach
. Hopefully now that you're finished chemo, your red blood count will come up and you'll start feeling better soon. Take care 0 -
Bonseye, I hope you enjoy your break in April and that you get to rest and heal. I'm pretty fair skinned and was afraid I would burn with rads, so I was pleasantly surprised at how well I fared. I used a combination of emu oil, pure aloe, calendula and Miaderm which was a cream recommended by my rad onc. I found some gel type nursing pads which I would place under my bra at the fold of my breast and then I switched to camis and would put the pad under that too. They were very soothing and I believe helped to prevent any chaffing.
I applaud you for wanting to help other women as a Breast Navigator.
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Beth, congratulations on being a soon to be grandmother of twins. What a blessing. I hope all goes well for your daughter. My twins will be 21 next month!
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I seem to be posting a lot tonight, but it's interesting to see as we complete or near completion of the active stage of our treatment, that there is a subltle shift in our focus. We are still dealing with SEs from chemo and rads but we're starting to ask ourselves what happens now? Quaatsi, I liked your post on not looking back but moving forward; and also not expecting to "pop right back into the world" and expect things to go back to the way they were. A lot of my well intentioned friends keep telling me how great it is that I'm finished treatment and now I can get back to normal. They want to make me feel better, but I know things will never be the way they were before. Some of them don't understand that. I'm thankful for this board and this group of women who get it. I'm thankful I'll be able to get and hopefully give support as we move on to the next phase.0
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LinnyHop I can tell you that TCM practitioners come in all shapes and sizes, so to speak. So, for instance, I do "internal medicine" and really am not interested in physical medicine as I find it too..."easy" it bores me. Plus, you cannot expect quick results for anything that is chronic and in our cases, what we are experiencing is definitely chronic-- (not acute). Again the benefit of that is that the faster the results the more likely are the side effects and in converse, the slower the results, the less likely the side effects. Plus, with chinese herbal medicine, as well acupuncture, the results are more widespread in the body, meaning you will find that other things in your body get better-- your mood, your willpower, and even some other aches and pains resolve despite not being directly addressed. It is a whole body/mind medicine. I can tell you that my patients often tell me that while they felt better for the main complaint, they felt better overall than they have ever felt.
I love this medicine but not all practitioners are equally good at all things. heck, don't come to me for shoulder pains.....LOL
Q
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Anyone feel as though they are a completely different person now than they were before dx? I feel...in a way...reborn and I'm not even through with all tx yet (rads still to come).
It's a curious feeling, but not altogether unpleasant, although I don't even recognize the woman I thought I was before 9/29/11 (dx date).)
Just wondering.
Claire
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linnyhopp,
I had a blood transfusion done for three units almost two weeks ago. It was the best thing I could have ever done!
I did it a quite differently though. I made arrangements through the blood bank for the Directed Donor program. My doctor sent in the appropriate paperwork on Monday morning, and I appealed to my family and close friends for immediate donations. I got four units of matching blood types donated on the same day!
The blood bank put an ASAP on the testing process, and I got my transfusion on Friday (a little over a week ago). I was so lucky to make it happen so quickly, and my doctor thought it was a great plan (less risk with known donors). It took almost 12 hours to get three units of blood as an outpatient at the hospital, but I felt an immediate (big) improvement with my weakness and fatigue issues.
You might check with the blood bank in your community, but here's a link to the procedures that were used for my Directed Donor transfusion:
I had a good history with the blood bank (lots of blood and platelet donations over the years), and maybe that's why they were so cooperative with my request. It may be worthwhile to see if that's an option you and your doctor might want to consider. Like I said, it has made a huge difference in my post-chemo recovery process. I'm still battling minor diarrhea issues, but otherwise I'm almost a new person!
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Hi Everyone ~ I am so grateful for all of your support and information. Q ~ I understand exactly what you are saying and as this journey unfolds, I am going to consider your input. I may PM you at some point. Racerdeb ~ I appreciate your info on the blood bank and the Directed Donor process. Our family did the same thing when my father had open heart surgery quite a few years back. It is a wonderful thing when you can plan ahead. My husband has a rare blood type and is a frequent donor at the blood bank so that would be a help.
However, there is a twist to my story at this point. I have Kaiser insurance and got a call from a doctor at their main hospital last night at around 10 p.m. I know that there are many, including myself, who are leary of HMO's. But, I am impressed with the communication and the continuity and speed of care. Apparently, some more results from my blood work had come in after normal hours and my discussion with my onc (who didn't have this info at around 5 p.m.). Long story short (I hope) it turns out my magnesium level was critically low and she advised me I needed to go to the ER and have an infusion. So I wake up my DH and off we go. I had to tell them I needed to be isolated from the main crowd, they were great and got me in a private area (even had my own potty). I stayed there moste of the night, complete with a mask on the entire time. The ER doc and the on-call onc team decided to give me the infusion, but they all agreed with my own onc that adding a blood transfusion is a risk for me at this point due to low white and red blood counts as well as the magnesium issue. They also didn't want me to stay at the hospital since the risk of getting sicker there is a real one. I am grateful to be home.
Spoke to my onc's nurse and she said at this point they really want to see if I can rebound blood counts on my own. May have to have the neuprogen later, but for now we are on hold. Sorry for the long post but wanted update you since you have all been so very supportive. I am pretty much confined to home for the rest of this week and hope they redo my blood work since I am now kind of paranoid about if it will rebound and I will feel different. I have been feeling unwell, but as everyone said, not as badly as the counts would show. I told my DH I am tougher than he thought and he agreed! That was nice to hear. Take care all and hope you all are doing well and wonderfully! Hugs...Linda
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Claireinaz,
Regarding your post about being different. I can't even believe the life changing diagnosis of cancer. I feel I am half the person I was. Physically, I am not the same- I have gained 30 pounds, am weaker and have no energy. Mentally, I am different- I feel vulnerable and inadequate.
While I was going through chemo and the surgeries, I was able to handle everything. People commented on my positive attitude. They didn't believe I could be sick. But when actively battling the cancer is over, then what? I feel like a sitting duck waiting for more bad news. The worst part of it, my MO doesn't believe blood markers indicate anything, so there really is no follow-up testing done.
So how do you know you are OK? I am told if I have bone pain or other symptoms that don't go away, then testing takes place.
I wish I could feel like the person I did before the diagnosis.
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Hi Sue, I think after a cancer diagnosis, none of us will ever feel the same. We diligently went for screening mammograms every year and perhaps tried to eat healthily or exercise and then we heard those words "you have cancer". I'm also trying to figure out what just happened. I don't know why it happened to me but it did. I'm also dealing with physical changes. I still have about 15 to 20 lbs to loose and everytime I look at my self in the mirror and see my buzz cut, I mourn my former self. I, like you was very strong during treatment because I felt I just had to get through it. My onc told me regardless of whether I had one met or a few, the treatment would be the same, so they won't be doing CAT scans or MRIs, but will be relying on me to report unusual symptoms. So when I start wondering if the hip pain I've been having all week is bone mets, I have to tell myself not to go there. When I was trying to deal with another difficult situation in my life, someone told me, you can't control everything that happens but you can control how you choose to react to it. So, somehow we have to figure out how to live with a degree of uncertainy and fear of a recurrance. For now I'm trying to live day to day. I still have times when I get anxious and fearful but for the most part I'm trying to enjoy the moment. I did think I'd bounce back a bit quicker, but we have been through a lot both mentally and physically and I guess it takes time. Someone gave me the name of a good therapist and if I find as time goes by, I'm constantly looking over my shoulder or thinking about breast cancer every day I think I'll call her. I wish you all the best and hope you contine to heal both mentally and physically and find a way to have peace with your diagnosis and prognisis. xox0
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I remember the first time I put on my wig and was rummaging through a dresser drawer looking for something and looked up and caught sight of myself in the mirror and laughed and thought, "V isn't going to like it that you're going through her drawers". And even though it was kind of amusing, I also realized at that moment that I was forever changed. After a good cry, I thought, this isn't the first time I've changed. Many life events have changed me to a certain degree. Graduation, baptism, marriage, births of babies, deaths of loved ones, especially my Mother, kids leaving home and getting married, births of grandbabies, on and on. Seems I've played many different roles. I thought, now I have to figure out how this has changed me, who am I now. I'm still working on that, but I do know it's ok to change. Change is part of life and I've decided to accept it and embrace it, and try to move forward, with a better understanding of how precious life is, what really is important, and to enjoy every minute and prepare for the next life event, whatever that may be.
Have a peaceful night everyone.
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I logged in before work this morning, just to post a question about my radiation treatments. But I read such well written posts by Claire, Grandma, and Sue that I had to stop and write something about that first. All of you are so right about how the cancer diagnosis has changed us forever. I completely understand the fears of no more testing, just waiting for the bad news to come sometime. That is how I feel, since my onc has said there is no need to retest to see if the cancer has spread anymore and my mammogram is still 6 months off-I will just have them yearly, as before. It scares me to think that any cancer cells could be floating around, escaping all the rads/hormone inhibitors/chemo/surgeries that I have gone through, looking for a place to set up housekeeping and start multiplying. I also agree that I plugged on through working everyday that I could and tried to keep things as close to normal as I could. I counted up the other day and saw that I had taken 28 days off this school year. My diagnosis was in September, so between those first few days of testing and now, that is how many days I missed for the tests that couldn't be scheduled after work, the treatments, the surgeries, etc. Several of my coworkers have commented that I am their inspiration to get up and come to work everyday, because if I can do it with all my problems, then surely they can come with a sinus infection, etc. I think also that things happened so quickly for us and we were sick so much that there wasn't time to think about much more than how to get through the present, and now that we are nearing the end of our active treatment phase, we are spending more of our time wondering what all this means and how we can best protect ourselves on our own for the rest of our lives. I guess the doctors are through, and now we have it up to us to handle our health. That is pretty scary. I will say that I have learned, though, not to take anything for granted anymore. I don't want to waste one more minute of whatever time I have left being angry or worried. I want to accept the new me and go forward from here. I don't want to spend the last years worrying about myself. If I have a recurrence, I will worry then. Let's all have a worry-free day today!
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grandma V-- that was beautiful! can't agree more.... Q0
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Claire, Gandma V, Bahamamom and Q,
I agree with all of you. I'm not sure about degree of change for me because I know there is definitely change. Grandma - I love your mirror comment. Bahamamom - I haven't worked full time since my first chemo. I've worked about 20 hours a week on intermittent leave. That's been pretty challenging so I can't imagine trying to do it full time. You have my admiration for sticking it out.....but yes you should take care of you.
My LTD policy includes mental health therapy and I never really thought I needed it during treatment. I'm a little worried though, about the "after" that you all mention. I have some hobbies that I can get back to once I have some energy (stomping thru corn and wheat fields to take photographs is more than I can manage right now) but I'm sure there will be all of the worries about recurrence. Heck I'm having those now and frequently. Maybe a therapist who has been thru FC is a good idea....if I can find one!
The good news is that I talked with my onc yesterday and she will do blood work every 3 months to watch blood counts and liver enzymes plus will do a CT scan annually. Maybe that will take some of the stress away. Claire & bahama - she told me what your onc's told you and then said that she watches the liver enzymes because they can give warning that something might be going on and the CT scan even though the party line is "regardless of whether I had one met or a few, the treatment would be the same" she would rather treat (as an example) one met to the liver than a lot and was sure I would also. YES
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Yes to the recent postings. What is the difference between being hypervigilant about every little blip in our bodies and simply being vigilant? I do know that the second I found my lump I had a wave of fear wash over me. I KNEW that something was wrong, even though my PC physician couldn't even find my lump at first after two visits and told me to wait till December 11 to get my yearly mammo.
I'm going to rely on my sixth sense as I did last August, when I first felt it. It's never failed me before. And--my oncologist will do blood work and an exam every three months for a while to monitor me. But she also said no PET scans, no CT/MRIs necessary either, unless warranted by the exam.
I refuse to sit idly by and wait for "bad news". The odds are all in our favor that we won't have bad news, anyway. I'm going to do everything in my power to prevent that from happening....I've researched preventing recurrences for 5 months now, and I've made that prevention part of my daily life.
When I think about what worried me and what distracted me before 9/29/11, I'm almost embarrassed--it all seems so petty. I think someone-on these boards, or I read it elsewhere--said that after breast cancer they were able to say they were grateful for what they had been given and grateful for what was taken away. I didn't understand that at first, at least the second part. I know now that I am grateful that my petty focus on so many things was taken away through this grueling journey. I will never be the woman I was before my dx date, and I missed her at first, but I don't really even think about her now. I kind of like this newer, war-weary, battle-scarred version.
I hope you all will eventually feel the same. We are beautiful right now and don't you forget it!
XXOO
Claire
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Hi Ladies,
Just want to comment on the above conversation about how BC changes us. I agree. I first went through BC in 2003 and it took me years to stop thinking about it every day. I had finally gotten to the point where I was seeing my MO once a year and I found my 2nd BC in August 2011 (local recurrence on the mx side). I've started thinking about how much time and energy I spent thinking about BC etc. I've come to the realization that the only thing we're guaranteed in life is today. We're not guaranteed tomorrow. We have to live today as though it was our last day. We don't know what could happen when we leave the house. Last week a man that lives down the road from us went out to get groceries and was killed a few blocks from his home in a head-on collision. So I'm trying to live each day to the fullest and making sure my family and friends know how much I love and appreciate them!
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BTW - You guys are the best!
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Linda, I had no idea low magnesium could be so serious, I hope you're better today and your blood counts are on their way up.
Everyone, thank you so much for all the inspiring stories about how you really feel. It's amazing that we all feel the same and can understand each other in such a profound way. You're all amazing women and I'm a better person to know each of you.
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dechi, thank you for sharing that. That is so true.
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