Stress, Guilt, Relief
I am going tomorrow for the more stressful shaving of the head and wig fitting (after the Nuelasta shot).
Just got off the phone yelling at the Oncotype people after getting a letter in the mail rejecting there claim because they didn't get preauthorization. They told me they couldn't discuss it with me; only with the patient; I lost it.
I posted a frantic message Friday night about Donna having a temperature and whether or not it could be caused by a hot flash; and not only got support; but got "caring." I really feel like the people on the board are concerned for a person they have never met and never even read a post from (unless they read Donna's posts on breastcancer.org)like she is a close friend or family member.
Anyway, her oncologist just gave the okay for us to go away, so we are taking a mini-vacation before chemo #3 - That's what charge cards are for. And although it seems to contradict my comment about not a lot of time to take off, Donna would rather have me take 3 days for a vacation then 6 half days to go with her to chemo.
TWO AC DOWN!!!; two AC then four T to go!!!
Bob
Comments
-
ok with Donna....then no guilt for you
Donna would let you know if she needed you to be the one taking her........yesterday I sent my husband home while I had my #5 treatment...feeling guilty he loses work time also.
It is great you will be able to get away...a little escape is a wonderful thing. It will all go by fast..............good luck and enjoy your time off together! You both deserve it.0 -
you're doing great
Bob, quite frankly, just the fact that you reach out to us all here shows how much you care and everyone knows that's not even the half of what you probably do.
Don't be so tough on yourself.
Your wife needs you feeling good about yourself just as much as she needs to feel good too.
Saint Bob. Has a nice ring to it, doesn't it?
xxoo,
SamuraiMom0 -
Time off
My husband could never go with me to my 4 chemo treatments. He used up all his time when I had the diagnosis and surgeries. I needed him them. I had one friend who went to two treatments with me and my SIL went to two treaments. It was nice to catch up with them and it made the time go so much faster. I think he would have been too nervous which I didn't need at that time.
Be kind to yourself! Enjoy your time away!
Patti0 -
Guilt~ it pops up in the
Guilt~ it pops up in the most unlikely of places, doesn't it? No rhyme or reason to it most of the time, it just is! Do you feel less guilty because we tell you not to be? Maybe, maybe not!
I have the most attentive and loving husband, and he also couldn't/didn't make it to every chemotherapy. One time, I insisted he go on vacation with his then teenage daughters; his family had made houseboat plans MONTHS before I was diagnosed. My brother in law ( bless his heart ) took a week off of work, drove 400 miles to stay with me, and simply took charge of the Chen alone situation!
Another time Reggie couldn't make it, and though I honestly would have been just fine, he sent his brother and girlfriend to sit with me. And though this time I don't need chemo (yet) I have friends lined up who have lovingly volunteered to sit with me. I think it is imperative that Reggie do things other than worry about me~ caregivers are like sponges; they need to rehydrate or they get used and dried up, they will not have much purpose...and not be much good to me or themselves. And I don't want that. Neither, do I imagine, does your wife!
I had an all day procedure at the hospital last week with the liver biopsy. The procedure itself didn't take too long, but the recovery was 6 hours! So, all told I was in the hospital almost 9 hours! Reggie sat with me for the first 2, he went as far as they would let him when they wheeled me down to surgery, and then I ORDERED him to go play 9 holes of golf! The course was 10 minutes from the hospital, and I had books, and magazines, lunch and jabbery RNs to keep me company. And oh yeah...nodding off from the anesthesia was nice too! The staff had his cell number in case they needed him. They didn't! Not to hear from me or the hospital let him know that all was well, and I was safe and being cared for.
Reggie and I just came back from a mini-vacation too~ we went to Lake Tahoe Friday~Monday. We were gifted a beautiful suite in a hotel, and transportaiton and dinner on the beach to watch the fireworks on the 4th. As the room was a gift, we could afford room service~ breakfast delivered rather than having to be up, dressed and riding the elevator 15 floors down was a blessing in and of itself! :-)
I have a sneaking suspicion that your wife knows you love her, care about her, are afraid for her ( and yourself) and everything inbetween. You have already proved that...tell her you WISH you could have been with her for her chemo, kiss her head, and let it go!And, speaking of her head, tomorrow is another day...wig and all. (((hugs)) to you both.
Enjoy your well deserved time away! You had life before the diagnosis, you can still have life during treatment, and oh boy! Just wait till your Life AFTER Cancer begins!
Take care of you while you take care of Donna....
Hugs,
Chen♥0 -
My husband couldn't attend
My husband couldn't attend all my treatments either. We had just moved to that state 5 months before so he had only worked that new job at a new company for 5 months. Didn't know many people so a few times his boss' wife took me so he didn't miss work. At one point he had to go on a business trip for a week so a sister came to stay with me. Another sister came another week. We just did what we had to do. I went to radiation by myself. In life sometimes we have to walk alone. But taking her on vacation is a nice way to spend time together.0 -
A Dried Up Sponge; EXACTLY!!!chenheart said:Guilt~ it pops up in the
Guilt~ it pops up in the most unlikely of places, doesn't it? No rhyme or reason to it most of the time, it just is! Do you feel less guilty because we tell you not to be? Maybe, maybe not!
I have the most attentive and loving husband, and he also couldn't/didn't make it to every chemotherapy. One time, I insisted he go on vacation with his then teenage daughters; his family had made houseboat plans MONTHS before I was diagnosed. My brother in law ( bless his heart ) took a week off of work, drove 400 miles to stay with me, and simply took charge of the Chen alone situation!
Another time Reggie couldn't make it, and though I honestly would have been just fine, he sent his brother and girlfriend to sit with me. And though this time I don't need chemo (yet) I have friends lined up who have lovingly volunteered to sit with me. I think it is imperative that Reggie do things other than worry about me~ caregivers are like sponges; they need to rehydrate or they get used and dried up, they will not have much purpose...and not be much good to me or themselves. And I don't want that. Neither, do I imagine, does your wife!
I had an all day procedure at the hospital last week with the liver biopsy. The procedure itself didn't take too long, but the recovery was 6 hours! So, all told I was in the hospital almost 9 hours! Reggie sat with me for the first 2, he went as far as they would let him when they wheeled me down to surgery, and then I ORDERED him to go play 9 holes of golf! The course was 10 minutes from the hospital, and I had books, and magazines, lunch and jabbery RNs to keep me company. And oh yeah...nodding off from the anesthesia was nice too! The staff had his cell number in case they needed him. They didn't! Not to hear from me or the hospital let him know that all was well, and I was safe and being cared for.
Reggie and I just came back from a mini-vacation too~ we went to Lake Tahoe Friday~Monday. We were gifted a beautiful suite in a hotel, and transportaiton and dinner on the beach to watch the fireworks on the 4th. As the room was a gift, we could afford room service~ breakfast delivered rather than having to be up, dressed and riding the elevator 15 floors down was a blessing in and of itself! :-)
I have a sneaking suspicion that your wife knows you love her, care about her, are afraid for her ( and yourself) and everything inbetween. You have already proved that...tell her you WISH you could have been with her for her chemo, kiss her head, and let it go!And, speaking of her head, tomorrow is another day...wig and all. (((hugs)) to you both.
Enjoy your well deserved time away! You had life before the diagnosis, you can still have life during treatment, and oh boy! Just wait till your Life AFTER Cancer begins!
Take care of you while you take care of Donna....
Hugs,
Chen♥
That was why I couldn't move for an hour on Sunday; I was a dried up sponge!!! After more than four hours in the emergency room Friday night getting Donna's blood counted (until 3 in the morning with our 13 year old son who got dropped off there after rehearsal for a show he's in)and a busy day trying to clean and do laundry on Saturday aside from driving my son back and forth and just regular errands to run; I was a dried up sponge.
What made the guilt ease up was Donna saying that everything went well during chemo. My mood has been following hers. So I am expecting tomorrow with the hair to not be a good day.
Some not so funny emergency room stories:
The nurse comes to draw blood and says "I didn't know you were here"; I guess that's part of the reason we were there for more than 4 hours.
We hear them talking to the person in the station across from Donna: Nurse 1- "So you are allergic to medication A, B and C."
Patient - "No, those are the medications I take."
Nurse 1 to Nurse 2 - "You wrote the medications down in the wrong column."
Nurse 2 - "My bad."
So now when one of us makes a mistake with something around the house, we just say "My bad." and we get a good laugh out of it.
Hugs back to all of you.
Bob0 -
Bob the Hubby .. I been watch your posts - I smile atMarcia527 said:My husband couldn't attend
My husband couldn't attend all my treatments either. We had just moved to that state 5 months before so he had only worked that new job at a new company for 5 months. Didn't know many people so a few times his boss' wife took me so he didn't miss work. At one point he had to go on a business trip for a week so a sister came to stay with me. Another sister came another week. We just did what we had to do. I went to radiation by myself. In life sometimes we have to walk alone. But taking her on vacation is a nice way to spend time together.
everyone I read -- You love your wife, without a doubt! Please don't bang your head against the wall everytime you miss a doctor's appt or chemo treatment. My husband was with me for all 18 treatments, with the exception of 1. Gee, I pleaded with my girlfriends and his friends to get him away.
You see, week after week, my husband took on the caretaker roll a little too much .. telling me when to eat, sleep and take med's. There were times when I wanted my voice to be heard while speaking to my oncolgist or his staff .. my husband would pat my arm or sholders (I wanted to slap him), and ask me to calm down. There is NOTHING CALMING about cancer or the treatments associated with this DAMN disease.
You see I am the stronger, clear headed thinker in our relationship -- 22 years and going strong. I am SPOILED , AND I get my WAY "always" .. I pretty much run the show here at home. With my breast cancer .. I've had to take a back seat here at home and in our relationship .. so the change has made us both stronger, and better equipped to deal with family emergencies, our children and life in general,
Last Wednesday, my girlfriend accompanied me to my Herceptin treatment . we then we shopping and to lunch .. Wednesday night like clock work - I threw up, and spent the balance of the evening hugging my toilet. My husband helped clean me up .. helped me shower, and while I sipped on my tea .. he told me about his day tending to his mother.
You may have to allow your wife to grow by accessing her own voice - ))))
Best of Luck .. and keep on posting!
Vicki Sam0 -
Bob, don't worry so muchVickiSam said:Bob the Hubby .. I been watch your posts - I smile at
everyone I read -- You love your wife, without a doubt! Please don't bang your head against the wall everytime you miss a doctor's appt or chemo treatment. My husband was with me for all 18 treatments, with the exception of 1. Gee, I pleaded with my girlfriends and his friends to get him away.
You see, week after week, my husband took on the caretaker roll a little too much .. telling me when to eat, sleep and take med's. There were times when I wanted my voice to be heard while speaking to my oncolgist or his staff .. my husband would pat my arm or sholders (I wanted to slap him), and ask me to calm down. There is NOTHING CALMING about cancer or the treatments associated with this DAMN disease.
You see I am the stronger, clear headed thinker in our relationship -- 22 years and going strong. I am SPOILED , AND I get my WAY "always" .. I pretty much run the show here at home. With my breast cancer .. I've had to take a back seat here at home and in our relationship .. so the change has made us both stronger, and better equipped to deal with family emergencies, our children and life in general,
Last Wednesday, my girlfriend accompanied me to my Herceptin treatment . we then we shopping and to lunch .. Wednesday night like clock work - I threw up, and spent the balance of the evening hugging my toilet. My husband helped clean me up .. helped me shower, and while I sipped on my tea .. he told me about his day tending to his mother.
You may have to allow your wife to grow by accessing her own voice - ))))
Best of Luck .. and keep on posting!
Vicki Sam
Bob, don't worry so much about the oncotype test cost. The rep for the lab called me before results were even in and said that I would probably get rejected by my insurance for no pre-authorization. My doc said not to worry about it. Oncotype gal said even if it was rejected, feds would pay because test is so expensive ($4050). She said that they believed no one should not get the test because of the expense and they would do everything possible to get it paid for. Rep just didn't want me to worry when I got reject letter. All worked out.
Cindy0 -
Its hard to be sick and alsoSnowkitty said:Bob, don't worry so much
Bob, don't worry so much about the oncotype test cost. The rep for the lab called me before results were even in and said that I would probably get rejected by my insurance for no pre-authorization. My doc said not to worry about it. Oncotype gal said even if it was rejected, feds would pay because test is so expensive ($4050). She said that they believed no one should not get the test because of the expense and they would do everything possible to get it paid for. Rep just didn't want me to worry when I got reject letter. All worked out.
Cindy
Its hard to be sick and also be the caretaker. My husband went to every chemo with me, as he is his own boss, but I have to admit I felt very quilty as I know it stressed him out. I was very ill on chemo and could not drive myself. I did not have anyone who could take that much time off. but when radiation time came. Other people could drive me as it was a shorter time period. I think it helped him and Me. I didnt feel so guilty, he had less pressure, and I got to visit with my friends. I am grateful for everything he did, and when he couldnt be there I knew it wasnt because he didnt want to be. Its give and take even when you are sick. It sounds like you are taking on so much. let the house go a little, it will be there when your wife is better. do takeout and take care of yourself a little. its a tough road but you will get through! promise. Chen is right REHYDRATE!0 -
your roller coaster
Bob - your life is certainly like that roller coaster (which I read on another post of yours that that is why you have that pic) - I described my time after dx (for the next 4-5 months) as either being in a tornado or drowning (mostly the drowning feeling). . . either way, I felt like I couldn't catch my breath through it all. I was scheduled to get chemo, which got cancelled because of the outcome of the Oncotype test. I do know that my insurance company has denied that claim (for the Oncotype test), but I had actually received a call from Genomic Labs (I think that's the name of the company that does the test) before they started the process. I was told that, if insurance didn't cover the test, they would cover it for me because we fell below a certain income level. But, I was going to say - for a month & a half I thought I was going to be getting chemo - it scared the he** out of me. I did go shopping for a wig at that time. I left the first wig store in tears . . . and I didn't even try on any wigs at that place. Luckily, my husband and daughter were with me - and completely understood. I agree - for me, anyway, that would be one of the hardest things to face, so I think it's great that you are planning to be with your wife for that. I hope Donna is feeling well and you can enjoy your mini-vacation. My husband was an unbelievable support for me and still is - and it sounds like Donna has that same kind of support from you. I'm sure that you are letting her know that we are all praying for BOTH of you . . .
With special thought & prayers,
Lynn0 -
Hi BobJean 0609 said:Hi Bob
Don't feel guilty. My husband is the same way and I feel guilty when he has to miss so much work. Enjoy your mini vacation! You both deserve it.
you both have a very long journey to go. While I understand your feeling the guilt will not help you to stay positive. My husband has been very supportive and stayed with me for the first Chemo. After that I felt emotionally strong enough to be by myself: he dropped me off , went to work, and picked me up after infusion. We tried to save his vacation days for both really bad side effects and real vacations after treatment. They give patients benedryll and I slept, then eat and read. I took medical leave I was very sick, my husband had to work making money and keeping insurance.
Have a good time and celebrate life,
New Flower0 -
My husband, to me, is aNew Flower said:Hi Bob
you both have a very long journey to go. While I understand your feeling the guilt will not help you to stay positive. My husband has been very supportive and stayed with me for the first Chemo. After that I felt emotionally strong enough to be by myself: he dropped me off , went to work, and picked me up after infusion. We tried to save his vacation days for both really bad side effects and real vacations after treatment. They give patients benedryll and I slept, then eat and read. I took medical leave I was very sick, my husband had to work making money and keeping insurance.
Have a good time and celebrate life,
New Flower
My husband, to me, is a dream come true! He took me to every doctor's appointment, went with me to every test and even stayed in the room with me when they would let him during the tests. He took me to every rad treatment and always made it a special day for me where we had lunch, went shopping, took a walk in the nearby park..something to make me feel good. He left me cards, notes, little gifts, a single flower, anything to let me know that he was in this with me. He never once complained as he knew I was the one going thru the fight for my life and he loved me and wanted to be as big a part of it as he could. My husband works for a great place and a great group of people that know both of us. So, when they found out I had bc, they didn't care what he did, time he took off or anything. They knew he would be with me anyway, whether they let him off or not. He is a hard worker and does his job well, so, they knew he would still do a good job, even if he was with me. He was my rock, and, I am so grateful and so thankful that he was always with me. Even though I had great support from both our families and our friends and co workers, HE is the one I really needed.
I think during times like this, we get to see exactly what true, unselfish love is.
Sue 0 -
I hope you & your wife enjoy
I hope you & your wife enjoy your mini vacation. You sound alot like my husband, in how he's helping me through all this. We've been having problems getting my surgery scheduled, and Tim was on the phone literally ALL DAY calling the surgeon's office, the plastic surgeon's office, and then the oncologist's office when we coldn't get anywhere with the surgeon. But, his persistence did pay off and I have my surgery set for a week from tomorrow (thursday). I've said it before, I only hope that any married woman going through breast cancer can have the support of a wonderful husband. It means everything to us 0 -
Oh the shame...
NOT! It's good for ur wife maybe to have a little "girl" time. I agree with her about the vacation days vs sitting 6 half days. I got to the point that I asked my husband to stay home. He's had two back surgies and it was very uncomfortable for him. Made me unhappy to watch him hurt. I would do alot of sleeping too. Now we text back and forth and the time goes fast. IPod with my favorite tunes. Oh yeah!
Sorry u had to go through that pain in the a%# preauth. There's always something trying to block you. Would think being married would allow u to access records, but it's called a HIPPA violation.
Good luck and prayers with you both. Katz0 -
Enjoy your vacation. WhereHeatherbelle said:I hope you & your wife enjoy
I hope you & your wife enjoy your mini vacation. You sound alot like my husband, in how he's helping me through all this. We've been having problems getting my surgery scheduled, and Tim was on the phone literally ALL DAY calling the surgeon's office, the plastic surgeon's office, and then the oncologist's office when we coldn't get anywhere with the surgeon. But, his persistence did pay off and I have my surgery set for a week from tomorrow (thursday). I've said it before, I only hope that any married woman going through breast cancer can have the support of a wonderful husband. It means everything to us
Enjoy your vacation. Where are ya going, does it involve margaritas. haha have a good time.0 -
Glad your surgery is scheduled!!Heatherbelle said:I hope you & your wife enjoy
I hope you & your wife enjoy your mini vacation. You sound alot like my husband, in how he's helping me through all this. We've been having problems getting my surgery scheduled, and Tim was on the phone literally ALL DAY calling the surgeon's office, the plastic surgeon's office, and then the oncologist's office when we coldn't get anywhere with the surgeon. But, his persistence did pay off and I have my surgery set for a week from tomorrow (thursday). I've said it before, I only hope that any married woman going through breast cancer can have the support of a wonderful husband. It means everything to us
It does take lots of phone calls to make sure all of this stuff gets scheduled correctly. Happy your husband could take that stress away from you, and you won't have to wait anymore.
Thanks to everyone for taking the time to respond and for all of kind comments. Tonight is good night so far with a little queeziness but not much else. The hats we ordered arrived and there were no tears over them, but I'm not looking forward to "hair today gone tomorrow" day; because I don't expect that to last.
Hugs
Bob0 -
Thinking about you two, Bob and Donna.Hubby said:Glad your surgery is scheduled!!
It does take lots of phone calls to make sure all of this stuff gets scheduled correctly. Happy your husband could take that stress away from you, and you won't have to wait anymore.
Thanks to everyone for taking the time to respond and for all of kind comments. Tonight is good night so far with a little queeziness but not much else. The hats we ordered arrived and there were no tears over them, but I'm not looking forward to "hair today gone tomorrow" day; because I don't expect that to last.
Hugs
Bob
I remember all to well the unhappiness I felt when I had my head buzzed. I thought I was prepared for it; it was just hair after all. Once I got used to it it really wasn't too bad. I'm glad you have some pretty head coverings and I hope that Donna handles it well. Good luck to both of you today!!0 -
Dont
feel guilty, waste to much energy. The important appointment was the first one, next one is the visit to the hair salon.
Ruby starts the chemo on the 22nd....we see the surgeon today for the last time I HOPE and wig fitting. We got the wig in May. Left you a message on FB.
Stay well and keep in touch brother
Greg0 -
Oncotype power trip
Onocotype seems to be on a power trip, with their precious, exclusive test. We spent over an hour on the phone wrangling with them, with my husband becoming furious and frustrated. Finally, the rep suddenly decided to inform us, "Well, we do have a patient financial aid program that probably will pay for it." It did, which was great (it's quite a generous program), but she had fun torturing us until then. What the heck?!
I hope all goes smoothly today! And I agree with others here -- no guilt for not attending every procedure. I sure prefer my self-employed husband to be taking care of his business.0
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