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Steff

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Posts posted by Steff

  1. Hi Lisa,

    I too, am a caregiver.  I understand your struggles needing to care for your parents and having a family of your own to care for too.  Caregiving is not for the faint of heart and is exhausting.  There is no magic wand to make it easier and no advice anyone can give that will take away our burden.  We just get up every day and do the best we can with what we are given.  Please know that there are others who completely understand what you are going through.  From the sounds of it, your dad is a fighter, although exhausted from fighting.  My mom was in ICU for 2 weeks due to severe pneumonia.  She was basically full of infection and really struggled, including being intubated for 24 hours.  But she pulled through.  It was a tough go, but she came out the other side.  Your dad has the support of you and your mom, along with medical staff.  He can pull through too.  You are looking for stories of hope, I came here too looking for hope - everyone on this site is an example of HOPE and a success story.  Your dad is alive, so there is HOPE.  

    Take Care,

    Steff

     

  2. Hi Fishon (I like your screen name),

    I understand your shock and some confusion after finding that your wife's lung cancer has possibly spread.  I was in a similar situation with my mom a few years ago.  Her lung cancer is different (non-small cell), but I too was in shock when, 1 year after surgery and the end of her follow-up treatment, her lung cancer was back.  Recurrences are all too common in lung cancer - that's the bad news.  But the good news is that regular, follow-up screening most often catches the recurrence early enough to treat it.   Your analogy of "chasing around lung cancer" is a great way to describe treatment for what is now considered, for many, a chronic condition rather than a death sentence.  With advancements in lung cancer treatment, doctor's can throw many different things at the cancer in the hopes to eradicate it or slow it down.

    You mentioned immunotherapy.  Yes, some SCLC patients benefit from immunotherapy.  When it is prescribed and why, I am not sure.  But research is showing that some kinds of immunotherapy help slow SCLC and/or eradicate it.  My mom was on immunotherapy for nearly 1 year for her recurrence (again, she has NSCLC) and she is nearing her 2 year mark of NED (I don't want to jinx it, her next scan results are on December 12th).  I am a big supporter of immunotherapy when it is appropriate.  If I were you, I would definitely bring it up and ask your wife's docs if it is an option.  Your wife's treatment options may not be simple or obvious as her initial option of surgery, so don't forget that you can always look for a second opinion if you are concerned about the options given to her.

    Hope this helps a bit.

    Take Care,

    Steff

  3. Hi Niess,

    I am happy to hear that you are getting a "much needed boost" from our responses to you.  These forums provide the same boost for me, as a caregiver.  I see many of the same frustrations and concerns that you have, with my mom.  Although there is a significant age difference, the two of you are similar in several ways, especially when it comes to getting pissed off about side effects from treatment.  And although my mom's treatment journey is different and her side effects are different, the frustration is the same.  Her biggest issue is getting out of breath with any type of exertion - even just walking to the bathroom.  She has always walked quickly and has always been a go-getter.  That has had to change and she hates it.  She hates having to slow down and hates how cleaning the house or mowing the lawn takes her 2 days instead of 2 hours.  And like you say, it is better than the alternative, but it still sucks.  

    I am sorry you are having to endure these side effects and sorry you have the added stress of keeping a job to keep your family afloat.  My mom was lucky in that she didn't have to worry about working (she was retired) or mounting medical bills (she has yet to see a bill from 4 years of cancer treatment - good insurances are a life saver).  She just had to care for herself and my dad (he is disabled).  We didn't think about the struggles of young people having to deal with work, kids, and mounting medical bills until we got to know the lung cancer population more.  That added stress is enough to drive someone crazy.  But here you are, LIVING your life despite lung cancer and the side effects that follow.  I am happy you are here with us and hope that you continue to get what you need from this group.

    Take Care,

    Steff

    P.S. - I know you said you didn't want any female driver jokes, but how about blonde driver jokes?? I only bring this up because my first car had a license plate frame that said: Caution, blonde behind the wheel (I was bleach blonde for most of my teens and early 20's).  

  4. Robert,

    I wanted to share my mom's experience with Chemo since she had a bit different side effect than others.  Luckily my mom never vomited (she cannot think of anything worse in life than vomiting), but she had severe acid reflux, which caused her to feel nauseous.  It took a bit for docs to find out the proper cocktail of meds that would ease the reflux, but once they did, she felt much better.  As everyone else has said, there are meds available for nauseousness, urge your wife to use them if she needs them.  If nauseousness persists, tell her docs so they can get something that works for her.  It is such a common side effect that they likely have something that will help, they just have to find it. And don't rule out acid reflux as a possible cause.

    I tried to prepare my mom's pantry with foods she loved and thought she would want to eat during her treatment.  This was very unsuccessful because her tastes changed with every round of chemo.  Things she loved tasted horrible to her.  Your best option might be to wait and see what sounds good to her and go from there.  One thing that my mom did drink a lot of were Instant Breakfasts and Kern's juice.  Both were suggested by my mom's oncology nutritionist.  Neither are overly healthy, but it provided the calories that my mom needed to stay relatively healthy.  

    Take Care,

    Steff

  5. Hey Fletch,

    I am sorry your initial post didn't get the responses you were hoping for, I have been a bit out of the loop and am seeing your post for the first time.  I am a caregiver for my mom as well.  Well, I am more like an advocate that makes sure my mom is doing her best to take care of herself.  From a caregiver's perspective, I don't think your rant is cold-hearted or uncaring. I understand 100% what you are going through.  My mom is on her 1st lung cancer recurrence. I was crushed when she was diagnosed with it.  I literally went to work and came home and cried and screamed.  I am thankful my husband was working nights at the time, otherwise he would have had me committed.  Again, I completely understand you and your brother's fear and heartbreak.

    Here's some food for thought: People are different in how they deal with a life threatening illness.  Your mom is obviously responding in a way that you don't agree with.  That isn't easy. My suggestion is to make sure she understands her disease and that if the lung cancer is left unchecked, she will likely die from it.  The main LUNGevity website has great, easy to read information about all things lung cancer.  There are also great checklists to use during doctor's appointments.  Once you know that she absolutely understands what she is battling, ask her what she wants out of this battle.  Does she want to deal with any type of treatment, even if the side effects are mild? If she does not want any treatment, ask her why - this can help you to understand her underlying reasons for her decision.  And at the end of the day, it is ultimately her decision.  If she is open to some type of treatment with little side effects, you can have this discussion with her docs.  If she is not opening up to you, you can let her docs know of your concern and perhaps they can help with the conversation.  But no matter what she understands, her answer may still be "no treatment".

    I'm sorry you are having to navigate these waters with you mom.  It's really hard when the child has to step up and act like a parent to their parent.  I've been doing that for 4 years now and it's exhausting.  But as a caregiver, we just keep moving forward, there's no other choice.

    Please know that these forums are a safe place to vent and there is no judgement here.  It's also a great place to get information.  LUNGevity also offers a Lifeline Partner program.  This program can pair you and/or your mom with a peer who understands what you are each going through.  Perhaps it would be helpful for your mom to hear from others who have been in her same situation.  You can look more into the program on LUNGevity's main web page.

    Please feel free to reach out anytime..we are here for YOU.

    Take Care, 

    Steff

  6. Hi Marie,

    Although I have not been a patient, I tend to agree with Tom.  My mom is on her 1st lung cancer recurrence after a lobectomy and follow-up chemo and radiation.  She was given the option of immunotherapy alone or immunotherapy and chemo combined.  The latter increased survival rates by 5-10%, for a total of about 50% survival rate.  My mom chose the latter and has been NED for over 1 year.  Your husband is looking at a combined 75% probability of survival, that is HUGE and sounds very hopeful!

    I am sorry you guys are in the position to have to make these choices, but it will get easier.  

    Take Care,

    Steff

     

  7. My favorite costume was last year's costumes...I was a crazy cat lady (I really didn't have to dress up much!) and my husband was a spice rack (a bra with jars of spices in it) - he was a hit at the party!

    My favorite halloween candy was the full-sized 3 Musketeers bar that my grandma and grandpa would have for us grandkids.  I don't even like 3 Musketeers, it was just the idea that my grandparents went to the trouble to get us all something special and the memories of it.

     

     

  8. GiGi,

    My mom's experience was similar to Curt's - no intubation tube down her throat.  I believe she had a catheter when she woke up but it was removed pretty quickly as they want you up and walking asap.  She also had the drain tube, she's had one a couple of times actually.  Although she said it was uncomfortable, it did not cause enough pain to warrant additional pain meds.  Some people go home with the tube, others stay until the tube can come out.  My mom was in the hospital for about a week and the tube was removed prior to her leaving.

    The reality is that you are not in control of what the docs need to do to keep you thriving through this procedure.  The anticipation and anxiety are often worse prior to the procedure than dealing with the actual procedure.  Curt gave you some great aftercare advice - it's something most patients need and have to do.

    Take Care,

    Steff

     

  9. JCM-

    My mom has CT's of the lung and abdomen once per year, it was more while she was on immunotherapy.  We were told it is to monitor the GI/liver/kidneys/etc - looking for inflammation. They obviously were also looking for any metastases too, but we were reassured the CT was standard protocol.  I wouldn't read too much into it, the docs are just trying to get the full picture.   

  10. Katum,

    I'm sorry to hear about your mom's situation.  I agree, it's hard to stay optimistic sometimes.  The good news is that your mom will probably feel much better after all of the fluid is drained.  Don't be too surprised if it needs to be drained a few times.  My mom had her pleural effusion drained probably 10 times over a year.  She ended up being full of infection, which was the likely cause of the continuous pleural effusion.  Although it was a pain to get it drained all of the time, she felt instantly better afterward - hopefully your mom will too.

    I am happy your mom has you for support during this journey.  I know it's not an easy road to navigate, but you will get through this.  We are here for you anytime you need.

    Take Care,

    Steff

  11. Diane's Husband,

    I echo what Tom has said - become the expert and advocate so your wife can focus on her fight.  This is how my mom and I were.  My mom can't even tell you what type of lung cancer she has, she left that up to me.  I keep all of the records, I do all of the research, while she focused on doing what her docs told her and taking care of herself.  Luckily I found these forums and the LUNGevity website to help with my research and support.  

    My mom did not have the stress of kids at home.  But she was the caregiver for my dad (I use the term "was" because he now lives in an adult family home).  While my mom could easily manage taking care of herself, my dad was another story.  Also, I live and work about an hour away from my parents, so staying every night with them was not possible.  So we had to rely on the help of my mom's 2 sisters.  They were happy to bring a meal to my dad or sit with him while my mom was getting her treatments.  

    The reality is that you will probably need some help.  It might be just periodically or it might be regularly, but you will need some help.  The key is when you ask for help, be specific. People often want to do something but they don't know what to do.  Or they do something that they think is helpful and it's really not.  So direct people to what you need.  I have a very small family (me, my parents, 2 aunts/uncles, and a cousin).  So far, we have survived 4 years of this.  There were times where it was not easy nor ideal, but we survived.  You can too.

    Please feel free to reach out to us.  We are here to listen and help, if needed.

    Take Care,

    Steff

  12. Jane,

    My mom received chemo and radiation after her lobectomy, her original diagnosis was 3a.  She did not have any treatment prior to the surgery.  Her surgeon was unable to remove all of the lymphnodes involved, which was why follow up treatment was needed.  One year after treatment, her lung cancer was back and she began to take chemo + immunotherapy.  It seems that has done the trick for over a year now.  She has ongoing side effects from treatment, but deals with it.

     

     

  13. Hey Mark, 

    I like your humor.  Sometimes that's the best way to deal with things out of our control (in my opinion) -especially when everyone around us acts so serious and somber once they hear the word "cancer".  I'm the cheerleader in my family (NOT literally).  I've been "cheering" on my mom for 4 years now, while she beat lung cancer, got it back, and then beat it again.  We've dealt with the sympathetic looks and the "ooh I'm so sorry's".  I think that people just really don't know how to respond.  

    I really like your "tumor texting".  Prior to my mom's diagnosis, she was in a bad car crash and had several brain scans.  She was told a couple of things from these scans - 1. She has a brain (it was a surprise to all of us! lol), 2. She has a "tumor" on her brain that has likely been there forever, it is benign and no big deal.  After she found this out, she blamed everything on her tumor.  It was funny to us, but others outside of the family gave us weird looks.  

    I hope you keep your sense of humor through all of this. You don't have to let lung cancer define you. While my mom has been dealing with lung cancer and it's effects for 4 years now, it has never defined her.  Even during active treatment and doctor's appointments several times a week, she has never allowed it to define or limit her.  I hope that you can find this happy medium as well.

    Take Care,

    Steff

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