Chemo May 2013

Teresa_G

Hi Carla and anyone else who might be lurking,

I liked my new oncologist, he said my levels looked good when they checked my blood and of course he did an exam and everything felt good.  He says that some of my side effects from the different pills could be intensified from my newest diagnosis, severe obstructed sleep apnea.  Fun for me right.  I am doing good on the Tamoxifen though.  No major problems to speak of with it, just minor things that I can live with so far. He scheduled my next dexa scan for October so we can see if my bones are being destroyed from these damn pills or if I am doing ok.  At least that is an easy test.  I have been happier and more positive this week than I have been in quite a while.  Other than Tuesday, OMG I was pissed.  I think I mentioned that I did the sleep study last month, well I got the results last week.  Tuesday I went in for my mask fitting and they said no I needed to do ANOTHER sleep study so they can try different masks on while sleeping to see what style will work best for me.  I was VERY upset, I told them that it was pretty bad that I got my referral to them in April from my GP and by the time I will actually get help with how exhausted I always am it will be October.   So now I have my next sleep study on Sept 24th, it will take up to two weeks for results.... then after I get the results I will need an appointment to get fitted for whatever they think I'm going to wear while sleeping.  I called my parents Tuesdays appointment and my Dad told me to pick up his oxygen machine and try using it in the meantime because I needed to get some rest.  It is actually working, feeling much more rested.  From my first sleep study they said that I stop breathing 75 times per hour and my oxygen drops into the 70's which isn't good.  I'm considering calling and telling them to just fit me for one that goes over the nose because my Dads oxygen is working fine.  Save me money on that other sleep study.  Seriously wouldn't you be pissed?  I told my co worker and she was so angry that she was shaking. 

How are you doing?  Teresa

Pattysmiles

hey Ladies,

Theresa, I'm sorry you are going through so much with the sleep apnea testing. Ridiculous!  Hubby had sleep apnea, did the study and they gave him a machine with mask...end of story, but perhaps they are more concerned about your levels (which should mean they get you in quicker!!). Anyhow, we lived with the machine, he felt better after getting a good nights sleep. Then he decided to go on Medifast and he has dropped 90 lbs and no longer needs the sleep machine!  Imagine that!  He is now a Medifast health coach.

I have come back to the boards because a mom in my Girl Scout troop has been diagnosed with a brain tumor.  I've only gotten the news third party with a "no on knows, don't say anything".  I am devastated.  Her daughter is my daughters age and she has a younger son too.  So nice!  I've told the person "in the know" to please remind that husband that I had gone through chemo and I might have some tips they can use.  Please keep her in your prayers.

Next is I have booked a get away with hubby.  Yes, he drives me nuts, but...life is short and I will make the best our marriage, and don't take that wrong, I'm not stuck, just miserable sometimes, but the good outweighs the bad and I need to lose some of my type A personality.  So, we are going away in October and will be away for the anniversary of my double mastectomy...which is when I considered myself to be "cancer free" (a term I take lightly).  Heading to Jamaica for an all inclusive...a first for me!  My mother in law will watch the kids ..this time it will be a shorter babysitting stint...only 4 days.

I hope everyone is getting caught up in the good things in life...life is too short to dwell on the bad.

Pat

carla53

Teresa glad you like your new onc.  So important to feel comfortable with our doctors.  Really, really glad you are doing o.k. on your tamoxifen.  Yuk on the sleep apnea issues.   Although it is good to know that that the machine will work for you.   My hubby just did the test a few weeks ago.  Finally got the results.   No machine needed. But he has hypertension due to obesity.   Doc says continue with oxygen at night. Which leads me to Pat.

Congrats to your hubby Pat for losing 90 pounds.  That's a life changer.  After reading  that your hubby lost his weight on the medifast program, I checked it out for my hubby.  Don't think it will work for him. Dogon it.  Sorry to hear about the mom in the Girl Scout Troup. Such a horrible thing for the mom and family has to go through.   I hope they reach put to you to get some tips.  Prayers to them.  

Jamaica is beautiful.   Went there about 15 years ago.  We went in December.   It was soooo hot and muggy but the locals had their sweaters on because it was winter to them. 

Been busy with 4 part time jobs.  Grateful to have them.  Very grateful to have the energy to do it.  

Carla

Teresa_G

Pat, glad to hear you are going on a getaway, I was there as well about 15 years ago but only for part of a day as one of our cruise stops. I would love to go back there some time, perhaps on a cruise in the future.....maybe with Chuck.  I am so sorry to hear of the Mom and her family, they are in my thoughts.  I say in my thoughts instead of prayers because of things I have gone through in the past and am still rather bitter about, I suppose one day I will make peace with it all.  Maybe when I am face to face with GOD and not until then, who knows.

I am still having tired days and days when I am more irritable than others but right now life is going good and I am happy.  I do need to lose some weight, I am not obese but have extra pounds that have been with me for years.  On the Tamoxifen one of the side effects listed is weight loss.  I jokingly told my onc that I wanted that side effect and he said that if there is a weight change on these meds for anyone it is weight gain.  Not at all what I wanted to hear!  

Carla, you are a busy woman!  How do you have the energy for 4 part time jobs?

carla53

Teresa. All I can express re you and Chuck is .  In re to your bitterness about what has happened in the past and your relationship with God...my thoughts and prayers are for forgiveness and peace.  My hope is that it is before you are face to face. )

I wrote 4 part time jobs, it's 3.  Must have been a Freudian slip.  I think the fourth one is my husband.  Ha ha.  Energy...some times I have it, sometimes I'm on the edge.  But so totally grateful to have all of them.  

Carla

Teresa_G

Carla,

You are so busy that I am sure it seems like 4 or more part time jobs!  Have a great weekend!  If anyone is on Facebook and would like to keep up with me there or by email, you can find me at tgunnsmail@gmail.com

Pattysmiles

I just went and met with the mom today, while the kids were at school. Her husband was there as well, we know them through sports and scouts, so not really socially. The hubby is AMAZING, he is her nurse in regards to meds and everything.  He will not let anything get by him.

I was thrilled to be able to share some hair loss coverings (I loved my buffs)..she is set up with the look good feel better program and hubby now has info to order the free head covering through good wishes.  They are in great spirits. I'm very happy I "intruded".  I will be going back with my box of wigs, brushes, combs and other hair coverings, so glad the center was closed when I tried to drop that stuff off!

Carla, I will not do the Medifast, I think it is mostly soy based, it is a high protein diet using soy based foods....I'm afraid of my estrogen positive cancer and the soy combined.  I was with my sister and she will be sending me her "meal plan" for me to try and follow, 6 small meals, a lot of protein, health fats etc.  I'm looking forward to something new.  I do know less sugar. Ironically I had purchased some Fiber one bars which are good fiber/ok protein but the sugar isn't great and I find I am RAVENOUS within 30 minutes of eating one.  Sugar makes you crave more food!

Theresa, I had a lot of questions for God in regards to cancer,...not about me, but about others, and you had a lot more "stuff" in your life (I don't want to minimize by saying "stuff", but am trying to be polite S**t seems to come to mind!)the conclusion I have come to is this...there is good and evil in this world.  Unfortunately evil wins at times.  Evil being the devil and his deeds.  I think Gods army is doing its best to help us but evil is at times stronger, or smarter, and gods army loses the battle.  I do not believe a loving God permits bad things to happen on a regular basis...so in my mind, it must be the evil devil getting the upper hand.

On 9/11 evil struck our country.  I think more people in the twin towers should have died.  My first place I ran into, down in the city, was a church to say a 10 second "God help them all" prayer.  I think God did his best by holding those towers up as long as he did so MANY were able to escape.

I'm not a religious fanatic, but the above is my way of dealing with the things that happen around me that seem unjust. My mother in law said, after her son died in a tragic car accident at the age of 17, that it took 2 priests to bring her back, 1 saved her soul, the other saved her sanity.  Maybe try discussions with a clergy person, and if you don't like what he/she says find another...I'm wishing you the best! And a big hug to you for being who you are!

Pat

Teresa_G

Thank you Pat, that was an awesome message and nice to hear of your perspective of things.  You made a lot of sense.  I have actually been trying to sort out my feelings since I made the comment on hear about my issues with God and even life at times.  I think I am coming to terms with a lot of it and Chuck strength with me has helped as well.  My family has always been there for me too but I think I already had that wall up for certain areas of my life.

I am so happy that you were able to go visit that family and share your head coverings, experiences and get her into the look good feel better class.  Everyone should know about that!  I donated most of my stuff to my cancer treatment center for others, they have baskets that patients can sort through to see if there is anything they want/need.  The baskets are pretty empty most of the time.

carla53

Pat that is so heart warming...maybe bittersweet. ..that her husband is so attentive.   So glad you wete

carla53

ugh i really messed up....now where was I.  Oh yeah.  Glad you were able to contribute to her comfort.   I remember you writing about your buffs .  

I like your mother in law's story about the 2 priests....  Not the part about her son passing though.   

Teresa I am glad you are coming to terms with things.  ))))

Carla

Teresa_G

Tonight here in Salt Lake Susan G. Komen is doing an event called Girls love Mail.  Survivors go and hand write letters on stationary they are providing with words of encouragement to those who are newly diagnosed.  I am pretty excited for this but not yet sure what I will write.  I will just figure it out when I get there.  They are planning to have enough supplies for everyone to write 2-3 letters.  I invited two other survivors to go with me but one can't go and the other doesn't want to, so it will be just me but I will meet other survivors there.  Plus there are refreshments so it should be a nice evening.

carla53

Teresa do tell how it went.

Carla

Teresa_G

It was a fun evening.  It was for Girls Love Mail that isn't even in Utah.  So we send the cards that we wrote to them and they forward them to Cancer places across the states.  They are given out to those newly diagnosed.  It was nice meeting new people and sharing stories.  Our local news wanted to do a story on it but couldn't be there that evening so they asked if any of us could come back yesterday morning.  So me and one other went back to be on camera while writing.  They interviewed one the president of our Utah Komen chapter and we were in the background writing and then they did some close ups of us writing as well.  So I will be on our news next Thursday, kind of cool.

carla53

Your 15 seconds to fame.  Glad it was a nice time.  And I'm sure those getting the notes will be grateful for them.

I had a colonoscopy a cpl wks ago and I had polyps.   I was told that if they cancelled my followup that it was good news.  Well they didn't so I started to get myself worked up.  About the same time, my underarm started hurting so I felt under it.  There was a lump.  I panicked.  Finally when I unpanicked myself I felt again.  It wasn't a lump.  It was a rounded bone or something.   Ended up my polyps were benign.   All that worry for nothing.  ))

Pat have you tried the new diet?  If so, how's it working for you ?

Carla

Teresa_G

Carla,

Good news on the polyps being benign!  I had the same thing last October and they said I didn't need another one for 5 more years.  Yay!

Scary about feeling a lump even if it wasn't anything to worry about.  I felt one last night.....I'm trying to not worry about it.  I see my GP tomorrow and my plastic surgeon today so I will see what they think about it.  I had my mammogram in May and all was good then.......I think I am ok.

carla53

Yes yay! I'm glad you are seeing someone tomorrow .  The sooner we get our minds to rest the better.  Oh I re read.  You saw someone today too.  What did your p.s. say wbout it?

Carla

 

Teresa_G

My PS said that it was fine.  I had two lifts on that breast last year and the tissue inside is more lumpy......to be honest I don't check like I should.  I need to make that Chucks job. 

Teresa

carla53

Oh good Teresa.  Phew.  I don't check as often as I should either.  It was the once in a blue moon checking that I found the  bc lump.   No excuse that I don't.   I am pledging that I will check monthly from now on.  Could be a life saver.....and yes, Chuck would be a good candidate for that. )

Carla

Teresa_G

My GP was very frustrated and upset that I saw her in April and told her how exhausted I always was and we still didn't have it completely resolved.  I finally got my Cpap machine Friday.  I wanted her to know so maybe she would refer her patients to someone else or something.  She was also happy to hear that I am now on Tamoxifen with fewer side effects than the others they had tried me on.  I don't have my aches and pains as bad now but I do still have the bouts of depression and anxiety. 

Tomorrow I go for my one year bone density scan, hopefully things are still good there.

carla53

yay on getting your cpap.  Maybe you will sleep better. And when you sleep better you feel better and when you feel better there may be less anxiety and depression.   Let's hope.  

Carla

Teresa_G

Carla,

Sad news, I am still waking up a lot......I am not as tired but that could be because of my change in pills.  I haven't been quite as exhausted since I changed to Tamoxifen.  I don't know if the Cpap is helping me out or not.  I go to that doctor on Thursday.  I will find out then.  I am on a new machine which automatically sends my nightly sleep reports to my doctor.  A week and a half and I don't notice a difference.  Then again I didn't know I stopped breathing a lot when I sleep. 

How are things going for you?

Teresa

carla53

Teresa things with me are going pretty good right now.  Knock on wood.  I seem to be keeping up with my work load and staying healthy. My lymphedema is a little bothersome but not bad.  My husband is staying pretty stable in his health.  Fingers crossed he stays that way.  Ya never know with him.   I'm holding off on my last 1 or 2 surgeries because I like feeling good.  My girls are mostly doing good to o.k. right now.  I did hear some lousy news about my brother the other day.  He is stage 4 lung cancer.   What happened to stage 1, 2 and 3.?  I don't know.  Boom...stage 4.  It has metastasized into his bones. Not good.

Carla

Teresa_G

Carla,

Sorry to hear about your brother.  That isn't good.  I am happy to hear that you, your husband and girls are doing well.  I don't blame you on holding off on your surgeries. 

Last week I had two BAD days, crawl in the hole and hide.  Ornery, depressed and anxious.  So I didn't take my Tamoxifen for two days and am better again.  I probably would have been ok just skipping one day but I wanted to make sure I really was ok.  I leave on my cruise on the 15th for 8 days and am really looking forward to the break from everyday life.

Teresa

carla53

Teresa Darn the effects of tamoxifen. Glad they go away quickly after not taking them for such a short period of time.

Countdown time for your cruise. Whoo whoo. )

Pattysmiles

Wow, skip a  few weeks (ok, a month) and I missed out on so much!

Carla,  I am so sorry to hear about your brother.  I have no words.  He has my prayers

Theresa, I know the Tamoxifen has messed with my sleep and my energy levels.  I guess it is the new me?  Can't say I'm loving it, but I will take my medicine and see how I do.  Have you checked out who the manufacturer of your Tamoxifen is?  I recall some ladies saying they swear they had different side effects based on the manufacturer (Teva is one, Watson is another, and I think there is a third?)  Are you taking the tamoxifen in the am?  That might help you with sleeping better at night. 

Theresa, I saw the letter writing...that must have been great.  When I was diagnosed I started receiving notes from across the country..I think about 20 each month.  From complete strangers.  Words of encouragement.  These were not survivors, they are volunteers to "Joanns Monarch Butterfly" (I think that is the name)....I still get some cards, though maybe 1 or 2 a month.  I need to reach out and tell them to move on.  Not that I have totally moved on, but I'm trying as best as I can, considering that we have doctors appointments every 4 months to remind us!

Carla, I have not reached out to my sister and gotten that diet plan.  I did go back to Weight Watchers...I just physically show up at the meeting...doesn't that mean I should automatically lose weight?  LOL  Anyhow, I hadn't been since last April and I managed to lose 1 pound.  I was very proud I did not put on 10! LOL  So I must have instilled some decent eating habits to have not gained back the 20 lbs I had lost!  However, just going to those meetings seems to make me think about food and I eat more....so I am now up 2 lbs.  There must be a happy medium!

I need to go back and visit with the sick mom from my girl scout troop.  Travel and crap have gotten in my way the past 3 weeks.  Though she did show up at the local Veteran's Day parade.  She is starting to blow up from the Steroids she is on.  She still has her hair though!  I tried her today to get her out of the house but no answer.  Her hubby just went back to work....as he was given a lot of time off to take her to her daily radiation treatment.  I will be making a point to get to visit and/or take her out.

I have found out that my husband's aunt has been diagnosed with breast cancer.  They did lumpectomy, radiation and now will start chemo. (is that backwards?, I thought chemo first?!)....so I need to give her a call and give her some advice and words of encouragement.  I don't like the sounds of what I have heard....3 months on one type of chemo, then 3 months on a different type and then a daily chemo for 6 months?  I need to speak with her and see what I can learn.  Then I can search the boards to find those helpful hints from the ladies that have already taken those chemos.  Her's will be Doxorubicin and Cytoxan for the first 3 months.  I did a quick search on here for Doxorubicin and have seen it referred to as either Doxil or Adriamycin....so I need to get that clarified as well.

Hope everyone is getting prepped for the holidays!  Theresa, you enjoy that cruise.  I LOVE to cruise...which islands are you hitting?

Pat

Teresa_G

Pat and Carla,

I am so excited, I leave tomorrow for Florida then we cruise out of Port Canaveral Saturday.  The islands we are visiting during our 8 day cruise are Bahamas, San Juan, St Maarten and Grand Turk.  We always check out cruise critic for other that are on the same cruise and have an awesome group going with lots of activities planned for at sea days.  I've never been with such an involved cruise group before.  Should be a blast.  I am planning on catching up on sleep while I am gone, me and my sister usually work in a nap every day. 

I hate hearing about others getting cancer.  It worries me about mine coming back.....a friend of mines Mom got breast cancer about a year before me and just had thyroid surgery for cancer there.  Another friend of mine her husband just had bladder surgery for cancer, this was his 14th cancer!!!!  OMG  Scares the hell out of me.  So I take my Tamoxifen and keep going.  No I haven't checked to see who makes the one I am on.  It works fine 90% of the time.  I am so glad I don't have the horrible aches like I had with anastrozole.  My sleep is getting better, it's just the other issues and I can deal with that.  Irritability, depression and anxiety mostly.....I take a clonazepam and that helps.  I am learning to watch and notice when this starts so I can take the clonazepam at the beginning of the signs before it gets really bad.

Take care and I will check on things here Thanksgiving week.  I get back late on the 23rd.

Teresa

carla53

Teresa you are well into your cruise. Can only imagine that you are having a great time. )

Pat-good to hear from you. ...it's so good that you lost 20 lbs AND 1 extra lb in the last 8 lbs. That means you are keeping it stable. I too hate hearing about others getting cancer. Knowing the journey they have to go through...well some journeys are certainly a lot worse than mine was.

Went to visit my brother figuring it was going to be 1 of a few visits before the cancer took him. It ended up that he passed away while I was down there. It was so totally unexpected. I was able to visit with him the first night for a cpl hours. That night he had a bad evening. Next morning, after about 20 minutes with him, they kept him on morphine and ativan. He passed that evening. R.I.P my dear brother Russell.

Teresa_G

Carla so sorry to hear about your brother Russell passing.  I am glad that you were able to be there with before he passed.  Nice to be able to say goodbye. 

I had an awesome time on the cruise!!!  My sister and I had a very nice relaxing vacation together.  We were with my brother and sister in law at dinner every night and sometimes here or there during the day.  I was however ready to come back home.  Now that it is snow season I am part time at work which I have been looking forward to.  Not the paychecks but the extra me time.  I just feel like I really need some down time, that sounds rather selfish after an 8 night cruise but that is how I feel. 

 

Teresa_G

Happy Thanksgiving to everyone.  I am thankful to have this forum.  It is so nice to have others that know where we are at and what we have gone through and share stories. 

I took my beagle to the vet yesterday because she was having some problems.  We are 90% sure that she has lymphoma.  Most likely she has a few weeks and we will keep her as comfortable as we can but I won't make her suffer just to keep her here with me either.  I have my grumpy shirt on today......

carla53

Teresa. So glad you had such a great time on your cruise and such a special time with your sister. So sorry to hear about your beagle. It's difficult to see them suffer and even more difficult to let them go.

Thanksgiving was great. Had 1 daughter, son in law, 2 grandkids and my dear friend over. Will be ringing the bell for Salvation Army 3 times in December. Last year I rang for the first time and enjoyed it.

Best wishes to you Teresa and Pat.

Carla