Starting Chemo, November 2013 Group

Roareus, I'm with you!  I finished dd Taxol 2/5, and it still sucks!  I know it's been honly two weeks, but I expected to be getting over it more by now.  Not so much!  I'm not having the body aches you still have, but my fingertips hurt, and I'm so bleepin' tired by the end of the day.  The end of the day, by the way, is when my two teenagers and DH get home and I want to be anything but tired.  My 13-year-old randomly stated yesterday ow gross it will look if my fingernails fall off.  Nice.  I'm not going back to work until late August.  I need all that time to grow back some hair (and probably nails), and just to get my mind back together.  Come here and rant as much as you like...we all do!  And, in case you missed the posts from a few days ago, we agree that we all benefit from ANYTHING any of us posts.

Smrlvr, how are you feeling about work?  I've made the decision to stay off the rest of the school year, and I have to say, it's a relief.  I feel beyond guilty tapping into the school district's catastrophic leave bank to do it because I only started contributing to it when I was diagnosed.  It seems so blatantly self-serving, but if all goes according to my hopes, I'll be contributing back to it for many more years.  

It's parent weekend at DD's university this weekend, and I'm going no matter what.  I may be conked out in her dorm room while the activities take place, but at least I'll be there seeing her.  I'm heading to Costco today to get her list of necessities (love her -- shampoo, conditioner, bodywash, floss, contact lens solution, Nutella).  I'm sure I'll be wrung out after this excursion, but here goes nothing.

Hi all,  

I have been missing in action so to speak.  Been a really rough patch here at home and I have been in very dark place.  I have been lurking however just not able to post .  Today as I sit in the BGC I feel the need to reach out to you ladies and hope  I am not too far gone.  Thank you much Toni for asking about me and noticing I was gone.

Whew, where to begin?  Last summer my hubby had back trouble.  He has had a bad back forever.  Two surgeries on blown discs and needed more however he avoids surgery now As the last two never works.  Anyway , in May he want in as symptoms were different.  Was hospitalized for a week and told they saw a tumor and at this point wanted to watch it.  Back was feeling better so all was good.  Follow up MRI said the spot on spine had shrunk so they no longer felt it was a tumor.  We forgot about it till early January when different symptoms  came back.  New MRI and also CT and MRI of head neck and spine showed spot now bigger bad two new ones.  Doctor now feels it is indeed a tumor with metastic drops.  At tho point no new symptoms and back feeling okay.  Neurologist want to so surgery ASAP on tumor.  Feels it is a Epymendoma which is usually benign howeve since it has spread already is probably metastic and cancer.  Very rare tumor only one out of a hundred thousand rumors are these.   Not many surgeons have handled them as they are so rare.  Not a good prognosis. 

I AM TERRIFiED!  He is my rock through all this and if I lose him I don't think I could go on without him.  His surgery is March 6.   At least a week in hospital and then on to rehab to learn to walk again.  Most likely will need radiation Madison which I don't know how to get him to as I will be starting my rads in seven weeks.   We will loose our home and land if he is disabled.  Not a biggie for me however he grew up on our homestead and would it devastate him  and our so. to loose it.  If I ever loose him I know I can't handle life without him

I have never asked why me regarding my cance, never felt bad or sorry for myself.  Now I do. WhAt kind of fate gives us both cancer?  Why would god take my husband from me while I battle my own war. How can god leave our sons as orphans of we both loose our fight.

I also have to admit I was feeling a little intimidated on our board.  So many of you wonderful ladies have careers and husbands with professional careers.  I am a CNA at a  group home and my husband is a maintance supervisor at a steel plant. While none of you lovely ladies ever said anything I just kinda feel like a lower level class men here.  

Thank you so much for listening and I wish you all the best.........

Oh Northwinds how horrible. Please don't feel like you are lower. I've worked in a drugstore for 35 years and my hubby is a pharmacy tech. So it's just retail in this house. There really isn't anything I can say to try to help you. All the goody, goody things will not help. Just know that we all are here to at least listen. Look at Ellen and take some hope from her. Hugs, and hugs, and more hugs.

Northwinds, I am so sorry to hear what is going on with your husband.  Life is really hard sometimes.  I don't think I could have survived without a total mental breakdown if it wasn't for this board.  We are all the same here.  Cancer doesn't discriminate.  It effects all ages, gender, education and income levels.  Please do not hesitate to post here.  When I was first DX, I sought out other women to talk to who could tell me what to expect and give me hope.  It was hard to find people at my stage until I came here.  Last week at chemo a woman from the American cancer society was walking through the chemo room asking us to fill out papers to subscribe to their services.  They have a reach to recovery where they hook you up with a survivor to help you through.  So anyway, they called me last week to ask if I had preferences on who I would want for my navigator.  I requested someone who had survived who had positive lymph nodes.  She called me back two nights ago night to say they had no navigators who had positive lymph nodes in their diagnosis!  I was annoyed, but the woman was nice so I just explained to her that I already had many people to speak with and I am doing fine.  And that is the truth, and it is because of this group. But ACS seemed like they really wanted to help, and I know they have services where they help with driving to treatments.  That could help if you and your husband have treatments on the same day.  

Bec, I am torn about work.  I really miss it.  I love my job.  I do not have enough sick days to get me through to the end of the year but I could always use the sick bank.  I really wanted to save some for next year when/if I do reconstruction or if I get a hysterectomy.  Also, I hear rads is easier than chemo and I will be so bored sitting around all day waiting to go to radiation, which in total will take 45 minutes a day.  Then what will I do?   On the other hand, I ask myself, what if I am totally exhausted?  It's not like I have a desk job and I just can't tell my students to go away!  I am also anxious about going to work with a wig and make up for eyebrows.  It's just not me.  On the bright side, we have a week off  in April for spring break and after the ap calculus exam my work load will lessen substantially. So To answer your question, I am torn about it, leaning towards going back, but it am going to check with RO when we meet next week to see what he says about side effects, fatigue etc.  I really feel,staying home during chemo was the best thing for me.

Hi Ladies,

Tonilee - I was pretty proud of you when I read your post. We all HAVE to be our own advoacte when it comes to our treatment and you are doing an amazing job of asking ALL the questions that you need answers to. The truth is that nobody can really understand how they would deal with cancer, unless they have had cancer. So, anyone who gives advise on how to 'deal' with it (and platitudes) is just being an arse. (Arse is an under used word, in my opinion). Sooo....Tonilee 1, Arse PA 0. Also, I think everyone here would agree, any problem that any of us have is worth sharing because, as I have discovered, we all need to let ot out with others who understand how truly crappy this can be. Otherwise, BC can be very isolating and depressing, another SE that is not listed anywhere. 

Lisa - Good to hear your doing OK. I had to laugh at the hotdog need. After my last infusion, I HAD to have a hamburger, fries and milkshake. (It has been at least 3 years since I had a hamburger and 10 since my last milkshake...They where sooooo good!!).

Wallymama - Great picture of the Mr. I too feel pretty lucky to have such a supportive DH.

Pat - You asked about the picture I posted. We live on a river (very large and great for sailing), which goes to the Atlantic ocean. It is beautiful here, but right now we have 5 ft snow banks so some of the beauty is lost on me....I can't wait for spring!!

Smrlvr/Audra/Pat/BigT/Amazon/all - Thanks for asking about me. It has been an 'interesting' week so far. I have seen my RO and my GP so far. My BS is on vacation until next week. What I know thus far is that I have some enlarged nodes that are of 'concern' and pre Mast MRI did not pick them up. (Apparently MRI's do not see certain things that CAT scans do, and because I have dense breast tissue, my mammos saw nothing). The two nodes that are of the biggest concern are the 1 cm one in my right axilla and a 5mm one in my lung. I will need to have biopsy the axillia node, and if it comes back as positive, surgery before radiation. Also, if it is positive, hopefully it will be the same kind of cancer as in the other breast. Otherwise, the chemo I am currently having is not effective which I am not sure exactly what happens then. The lung node is a 'wait and see' scenario. If it gets bigger, it too will need to be biopsied, but right now it is considered to be to small. Also it is in the lung (as apposed to on it) so a biopsy would require general surgery, and is considered to be a pretty big deal. My RO thinks that the seroma will settle and I won't have to do anything with it until after radiation. I did ask the question - Is this what reoccurrances and mets can look like? The answer was, for some people, yes, but some people never see additional lymph node enlargement, and mets shows up directly in the liver, or bones, etc. All this being said, I won't know what I have until I have a biopsy done.

A bit of venting....You might wonder why I am not discussing this at more length with my MO. It's because she does not have 'conversations'. My MO throws test results at me as she is leaving the room and says things like 'this will need to get looked at....'. I have tried in the past to ask questions, and have found her to give one word answers that are painfully inadequate, and evasive, so now I go to my RO who has always been amazing at giving me all the details I need. I also go back to my BS who has also been great as has my GP. Anyway, some doctors are just not good at the people side of being a doctor, which really makes me wonder why they became a dr in the first place....

Tomorrow I am in the BGC for my second Taxotere, and second to the last chemo.  The anticipation for these treatments is crazy for me. Yesterday I made veggie chili and good for you sheppards pie to make sure I had stuff I can/want to eat available. Wow, are my eating habits odd right now.

I hope all are having a good day today and a warm night

JAB

Northwinds- After my MRI, I was told they found a second tumor on my right breast.  After my right UMX , I was told the second suspicious spot was not cancerous.  My decision was not based the second blip on the MRI.  Sending lots of hugs your way.    You should never feel like a different class because your don't have a college degree.  My husband doesn't have one either.  He went to the Air Force instead of going to college.  The most important thing is how big your heart is, not how may initials after your name. 

Northwinds, I'm so glad you came back to let us know what's been going on with you.  Waiting is so much harder than knowing.  We all are here waiting right with you.  (You too, jab!) 

inks- congrats of finishing chemo!!!!

I'm in the BGC today for Taxol #8.

Have a great day everyone.(((HUGS)))

northwinds , first if all I am sending you a virtual hug. I am sorry you are going through this and I pray you both do well. I can totally relate to what you are feeling, my husband had chest pain 2 weeks after I was diagnosed with breast cancer. He had to be life flighted to the CardioVascular unit , pretty scary stuff! Anyway, they found out he had an aneurysm on the ascending aorta that needed to be repaired very quickly. This is what John Ritter died of. If this wasn't bad enough, they saw some spots in his lungs that suggested he had lung cancer so they wanted to see what it was before they operated on his heart. So I can related to your anxiety and the "why is this happening g to both of us at the same time". Long story short, it wasn't lung cancer, he had the heart surgery and 2 weeks later I had my DMX. We recuperated together and it has made us stronger as a couple. This is the true meaning of " in sickness and in health " . We have seen each other at our best and at our worst. Hang in there, God is in control. 

Had a huge fight with my 16 year old daughter who is away at boarding school on scholarship.  Wish I had money or a husband or even just a counselor.  Don't need massive teenager stress on top of cancer but life doesn't give us good timing.  Just things to deal with the best way we know how.  Today parenting is sucking massively.

Hello Everyone,

I finished chemo three weeks ago.  They did some blood work today and noticed that my Alkaline phosphatase (ALP), liver function test,  is elevated.  Normal is 33-97 Units/L but mine is at 144.  Anyone with similar experiences?

Thanks,

Northwinds, Please please don't feel constrained, restrained, or in any way unwanted, or whatever. Yes, we've got women here from all sorts of walks of life and primarily from two countries: if some of us talk about vacations that others can't afford, and some talk of buying new rugs for their depressing bathroom, this is a place where we all can vent and celebrate and commiserate. We all deserve to speak without self-censoring. 

Me. Ugh. I'm halfway through rads and have some nausea, exhaustion, and sleep problems. Talked to my son at college yesterday. He's overwhelmed with anxiety and depression, and needs to withdraw, and he doesn't know how to go about it. I'm in total exhaustion and have to go to rads everyday. I cannot go down to help him. 

while hanging out in the lobby before my neupogen shot, had the privilege of catching up with another nurse/patient.  She looks and feels so good/. I have been reminds that my thigh/ groin lymphadema treatment is for a lifetime, as is my chemo.  Staying on one until failure, then back to the treasure chest.  This week we switched from abraxane to taxol as it is kinder gentler to my white count.

I can do all things through Christ who strengthens me.

Anita

Ellen, you look great! Seriously!

And Paulette! So good to see you! We miss you!