'I've looked at life from both sides now...' - Joni Mitchell

D Lewis
D Lewis Member Posts: 1,581 Member
in Head and Neck Cancer #1

Feeling sad.  My mom, who lives in Kingman, AZ, was rushed to the emergency room last Wednesday with extreme breathing difficulties.  She is 80, and a lifelong smoker.  The doctors discovered by X-Ray and CT scan that she has a mass in one lung that has spread and is wrapped around her trachea, and that her lung is collapsed.  She also has suspicious spots on her liver. She was on blood thinners, and had to wait four days till yesterday for biopsies.  The doctor had hoped that he could install a stent into her trachea to reopen her airway, but found that the mass is down so low that it can't be stented. My mom had bleeding during the procedure, so the doctor wasn't able to grab an adequate biopsy sample, and now he doesn't have enough tissue to make a diagnosis.

My mom won't be referred to an oncologist until the biopsy results have come back. The anasthesia and the biopsy process was very hard on my mom, she's still on a BiPAP, and she almost had to be sedated and intubated to get her blood oxygen levels back up.  The doctor is talking about attempting another biopsy on Thursday, the nurses are pissed because he put my mom back on blood thinners, and I am left convinced that we are quickly running out of time. Absent the stent to reopen her airway, she may not last till they get to the palliative Chemo part.  

My siblings and I have been alternating traveling to Arizona and staying with her.  I am at home in California right now, or heads would be rolling.  I asked the nurses to have the doctor call me, so we could talk about what is going on, but apparently this is a very busy little pulmonologist, and he keeps getting called away from my mother's bedside to respond to some emergency elsewhere. I left a very sharply worded message this evening, demanding that busy boy leapfrog ahead a bit, and order a PET CT in advance of the biopsy results.  At least that way, we'd have a better idea of where she stands. I've had two California oncologists tell me that if I were elderly and on Medicare, they would not need insurance preauthorization for the PET CT.  Hoping it is the same in AZ.  I don't want my mommy to die of lung cancer.  I don't want her to suffocate in her hospital bed while some yay-hoo pulmonologist wastes time and gets distracted. 

Surviving cancer and cancer treatment was sucky enough.  Now I see that it's going to be even harder watching my mom go through the process. Hardest of all is going to be walking with her all the way to the edge, and then letting her go. We've done that with so many of our fellow warriors here.

Deb

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Comments

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #2
    Sorry Deb...

    Sorry you have to have all this on you Deb.....my Dad was 73 when dx with acute Leukemia and died 4 months later ...I arrived the week before he died...all the treatments we appreciated but in the end it just wore him out ...it's so hard to see a parent go thru this....

    Wish so much I could do  more ...but whispered a prayer doctors would be around her who care and are sensitive to her and for strenght in body and mind for her and you, your siblings / family.

    Your mom is fortunate to have you on her side...not just bc you have been down a tough road, but just from your many posts I have read over the months.....I'd want you on my team and would be afraid to get on your wrong side. (humble smile)

    Keep us posted.

    Tim

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #3
    Tim6003 said:

    Sorry Deb...

    Sorry you have to have all this on you Deb.....my Dad was 73 when dx with acute Leukemia and died 4 months later ...I arrived the week before he died...all the treatments we appreciated but in the end it just wore him out ...it's so hard to see a parent go thru this....

    Wish so much I could do  more ...but whispered a prayer doctors would be around her who care and are sensitive to her and for strenght in body and mind for her and you, your siblings / family.

    Your mom is fortunate to have you on her side...not just bc you have been down a tough road, but just from your many posts I have read over the months.....I'd want you on my team and would be afraid to get on your wrong side. (humble smile)

    Keep us posted.

    Tim

    Thanks, Tim

    In so many ways, this was exactly what I needed to hear. Not feeling so all alone now.

    Deb

  • katenorwood
    katenorwood Member Posts: 1,912
    #4
    Get another opinion

    Deb,

    Working with pulmonologists myself....yeah you're lucky to catch the same guy/gal twice in the hospital.  They usually have teams....ask to speak with one of them.  I am so sorry you're going through this, and your poor Mom !  I defineately agree with you it is sucky period.  I'll keep your Mom and your entire family in my prayers, and Deb I'm always here to talk.    Katie

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Blessings in Disguise...

    Think of yours as a blessing in disguise....

    You have been through it, you know what it's like, you are very well educated on cancer, treatment, all aspects...

    You have the knowledge and experience to be a help that you never would have had if you had not gone through this yourself.

    Thoughts, Prayers, Blessings ~ John

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
    Skiffin16 said:

    Blessings in Disguise...

    Think of yours as a blessing in disguise....

    You have been through it, you know what it's like, you are very well educated on cancer, treatment, all aspects...

    You have the knowledge and experience to be a help that you never would have had if you had not gone through this yourself.

    Thoughts, Prayers, Blessings ~ John

    <3 Thanks Katie and John</b>
    Blessings.  I'll start counting them now.
    Deb
  • hawk711
    hawk711 Member Posts: 566
    #7
    D Lewis said:

    <3 Thanks Katie and John</b>
    Blessings.  I'll start counting them now.

    Deb

    Deb

    Sorry to hear about your mother.  I too lost my mother to cancer when I was 24 years old.  I lived 6 hours away (drive time) and it was really hard on me to not be there for her at all times.   This is not an easy time for anyone in your family.  All I can send is a prayer and good wishes for you. 

    all the best

    Steve

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #8
    keep the faith

    Deb,

     

    I am very sorry to hear about your Mom, I hope she is resting comfortably.  Nothing is easy in these situations, but I hope her treatment and care fall into place soon.  I agree with you the whole thing is “sucky”. 

     

    Best always,

     

    Matt 

  • Ingrid K
    Ingrid K Member Posts: 813
    #9
    CivilMatt said:

    keep the faith

    Deb,

     

    I am very sorry to hear about your Mom, I hope she is resting comfortably.  Nothing is easy in these situations, but I hope her treatment and care fall into place soon.  I agree with you the whole thing is “sucky”. 

     

    Best always,

     

    Matt 

    stay strong

    Hi Deb

    Such a tough spot to be in...it does totally suck.   Hope that you and your Mom can find some good answers regarding her care.  As others have said, having been thru our experience, we now know to keep on asking questions and be the squeeky wheel to get what you need.   You are your Mom's best voice... Stay Strong.

    sending prayers and cyberhugs your way.

     

     

  • cureitall66
    cureitall66 Member Posts: 913
    #10
    Hang in there...

    Deb,

    I agree with the folks here that have posted. You are a strong woman and have a lot of background with this process. This will help you and her. I agree to grab a hold of someone on the team to speak to if you can't be there. Maybe that will give you peace of mind.

    Prayers for her comfort and for your peace of mind. Hope you can't get these issues resolved quickly.

    Blessings,

    ~C

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #11
    Update on Mom

    I had a long talk with my Mom's doctor yesterday. Her condition is very poor. The doctor believes based on the radiographs that she has small cell lung cancer which is growing very aggressively. The mass is at the bifurcation of the right main stem of her bronchial tube and is in danger of blocking her airway. They have sent all her biopsy samples to the cancer center at the University of Arizona, in the hopes that they will be able to identify the cancer. If the U of A is unable to identify the cells, they will have to attempt another biopsy at mid-day today. Her likelihood of surviving the procedure is very low.  She is alert and has her wits about her.  We had a lively conversation last night and again this morning about genealogy and our efforts to research certain mysterious ancestors. I promised her that we'd get together soon to do more work on this.  My sister is with her.  We are taking this one day at a time.  

  • alligatorpointer
    alligatorpointer Member Posts: 131
    #12
    D Lewis said:

    Update on Mom

    I had a long talk with my Mom's doctor yesterday. Her condition is very poor. The doctor believes based on the radiographs that she has small cell lung cancer which is growing very aggressively. The mass is at the bifurcation of the right main stem of her bronchial tube and is in danger of blocking her airway. They have sent all her biopsy samples to the cancer center at the University of Arizona, in the hopes that they will be able to identify the cancer. If the U of A is unable to identify the cells, they will have to attempt another biopsy at mid-day today. Her likelihood of surviving the procedure is very low.  She is alert and has her wits about her.  We had a lively conversation last night and again this morning about genealogy and our efforts to research certain mysterious ancestors. I promised her that we'd get together soon to do more work on this.  My sister is with her.  We are taking this one day at a time.  

    capture the moment if you can

    I am reminded of how much I miss my own mom when reading about your phone conversation with yours.  One of the things I miss the most is the sound of her voice and wish I had made some recordings.  Your genealogy conversations with your mom about mutual ancestral research is something that would be a treasure to capture if at all possible.  I think there are ways to record phone conversations.

    Hoping that your mom will receive the best possible care and the strength of your love will comfort her while she is so gravely ill.  Positive thoughts being sent for her recovery.

  • alligatorpointer
    alligatorpointer Member Posts: 131
    #13
    D Lewis said:

    Update on Mom

    I had a long talk with my Mom's doctor yesterday. Her condition is very poor. The doctor believes based on the radiographs that she has small cell lung cancer which is growing very aggressively. The mass is at the bifurcation of the right main stem of her bronchial tube and is in danger of blocking her airway. They have sent all her biopsy samples to the cancer center at the University of Arizona, in the hopes that they will be able to identify the cancer. If the U of A is unable to identify the cells, they will have to attempt another biopsy at mid-day today. Her likelihood of surviving the procedure is very low.  She is alert and has her wits about her.  We had a lively conversation last night and again this morning about genealogy and our efforts to research certain mysterious ancestors. I promised her that we'd get together soon to do more work on this.  My sister is with her.  We are taking this one day at a time.  

    capture the moment if you can

    double-post deletion

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #14
    alligatorpointer said:

    capture the moment if you can

    double-post deletion

    Deb

    So sorry to hear about your Mom's struggle. Prayers are with you, girl, and her. Lost my younger Sister to lung back in 2009, so I know well the creature lung can be- and hope and Pray your Mom and her Drs can win her fight with it. For that being possible, and for you and your family getting thru this ordeal okay, Deb-

    Believe

    kcass

  • hwt
    hwt Member Posts: 2,328 Member
    #15
    Kent Cass said:

    Deb

    So sorry to hear about your Mom's struggle. Prayers are with you, girl, and her. Lost my younger Sister to lung back in 2009, so I know well the creature lung can be- and hope and Pray your Mom and her Drs can win her fight with it. For that being possible, and for you and your family getting thru this ordeal okay, Deb-

    Believe

    kcass

    Deb

    Just a few months ago, we were told my 87 year old Mother would not make it through the night. Following successful surgery for a small stomach cancer, she took a fall while in the care center and had a compound wrist fracture requiring immediate surgery. Weak lungs put her in jeopardy. We flew in her grandsons from Alaska, Calif and CO. My Mom was at peace with what was happening and we looked at that night as a gift to be with her and say the things that are often left unsaid. Well, we never saw that doctor again and Mom is home and on the mend. One just never knows. I encourage you to take the gift of time to tell your Mother everything she means to you. Whether I have another day, another year or 10 years with my Mom, that gift of conversation that night can never be taken away.

    My best to your Mom and your family.

    Candi

  • luvofmylif
    luvofmylif Member Posts: 344
    #16
    hwt said:

    Deb

    Just a few months ago, we were told my 87 year old Mother would not make it through the night. Following successful surgery for a small stomach cancer, she took a fall while in the care center and had a compound wrist fracture requiring immediate surgery. Weak lungs put her in jeopardy. We flew in her grandsons from Alaska, Calif and CO. My Mom was at peace with what was happening and we looked at that night as a gift to be with her and say the things that are often left unsaid. Well, we never saw that doctor again and Mom is home and on the mend. One just never knows. I encourage you to take the gift of time to tell your Mother everything she means to you. Whether I have another day, another year or 10 years with my Mom, that gift of conversation that night can never be taken away.

    My best to your Mom and your family.

    Candi

    So sorry to hear about your

    So sorry to hear about your mother. I know what it feels like. I lost my mother 5 years ago, although, not from cancer. She live to a ripe old age of 92 but it still hurts ...we only have one mother. It's painful when we fear we may lose someone we love. Not much more painful in life then that. Enjoy every minute with her and cherish her as I am sure she does you.

    Strength and peace.

    Joan

  • phrannie51
    phrannie51 Member Posts: 4,716
    #17
    D Lewis said:

    Update on Mom

    I had a long talk with my Mom's doctor yesterday. Her condition is very poor. The doctor believes based on the radiographs that she has small cell lung cancer which is growing very aggressively. The mass is at the bifurcation of the right main stem of her bronchial tube and is in danger of blocking her airway. They have sent all her biopsy samples to the cancer center at the University of Arizona, in the hopes that they will be able to identify the cancer. If the U of A is unable to identify the cells, they will have to attempt another biopsy at mid-day today. Her likelihood of surviving the procedure is very low.  She is alert and has her wits about her.  We had a lively conversation last night and again this morning about genealogy and our efforts to research certain mysterious ancestors. I promised her that we'd get together soon to do more work on this.  My sister is with her.  We are taking this one day at a time.  

    I'm sorry to hear about your Mom, Deb....

    I'm hoping tonight finds her resting easily and that the U of A was able to identify her cancer type, so she didn't have to have another biopsy today.  I know how hard it is to see you mom this sick.....it's scary even tho we're old enough to have grandchildren of our own.  Sending prayers and positive thoughts to your mom and your family.

    p

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #18
    Biopsy done

    My mom made it through the biopsy procedure late yesterday.  I told my daughter (remember - this is the wise child) "Mom made it.  Why am I not cheering and celebrating. Oh wait, I know.  She still has stage 4 lung cancer."   Wise child said: "Time to celebrate the small victories."  I love that kid.

    Thank you all so very much for the words of support.  It helps a lot.

    Deb

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #19
    D Lewis said:

    Biopsy done

    My mom made it through the biopsy procedure late yesterday.  I told my daughter (remember - this is the wise child) "Mom made it.  Why am I not cheering and celebrating. Oh wait, I know.  She still has stage 4 lung cancer."   Wise child said: "Time to celebrate the small victories."  I love that kid.

    Thank you all so very much for the words of support.  It helps a lot.

    Deb

    ...LIKE...

    image

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #20
    Skiffin16 said:

    ...LIKE...

    image

    now

    now i need to find an agree button

    then learn how to post picture

    also like how fast site is working today

     

  • wolfen
    wolfen Member Posts: 1,324 Member
    #21
    fisrpotpe said:

    now

    now i need to find an agree button

    then learn how to post picture

    also like how fast site is working today

     

    Hi, Deb

    Just wanted to say how sorry I am that your Mom is having such a rough time right now. I understand how difficult it is to see her hurting.

    Some doctors seem to have such a casual attitude toward patients if they are older, as if we are no longer valuable to society. I have "burned a few ears" in hospital rooms and corridors during the many times my hubby has been hospitalized. I have a real aversion to total stupidity. A perfect example is the broken-English speaking doctor who wanted to do a pelvic exam on my 85 year old crackerjack mother who had fallen down the stairs while at work.(Yes, she was still working at age 85). She had broken her collarbone. I finally had to get an interpreter to get him to understand that it was the top end that was broken, not the bottom end, and no, she didn't want a pelvic. So, I'm glad you were assertive and got your point across. 

    I hope U of A can get those biospy results completed so some kind of treatment and relief can be started. FYI, we have MD Anderson, Mayo, and CTCA in the Phoenix area if she isn't getting proper treatment in Kingman and can be moved.

    Take Care,

    Luv,

    Wolfen

     

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