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Caring but afraid

Caring but afraid

Posted by Momordica on Jan 28, 2019 10:06 am

Good day.  My wife was diagnosed with lung cancer in 2012 and she underwent lobectomy of the right middle lobe and part of the upper lobe.  Thereafter she underwent chemo and radiation treatments.  The cancer came back again, and she was given Iressa (Gefitinib).  That held the cancer at bay for some time.  Then they found a spot in her brain and also in her left lung, so they moved her over to Tagrisso (Osimertinib).  She had coughed up blood last May and the doctors suspected pneumonia and was prescribed antibiotics.  We took the Pneumonia diagnosis as mentioned. She had undergone a bronchoscopy and they found nothing there. She also started having pain in her arm and her radiation oncologist suggested having it radiated and she had the procedure done.  The pain left for a few weeks and again started sometime August,  She again underwent 5 radiation treatments to her arm and she had pain from the radiation, which was explained to us so she had hydromorphone, Tylenol and Advil to keep the pain manageable.  The pain again left for a few weeks then started again sometime early December.  She controlled the pain with Tylenol and Advil as needed.  On December 30, she again coughed up blood and I brought her to the emergency room and she was seen by the doctor.  She was told that her coughing up blood could be caused by one of the nodule being close to a blood vessel that may have ruptured and that she would maybe need to be seen by a respirologist.  The respirologist came and told her blunty, "you know you will die from your cancer".  What a way to start a new year.  That really hit us but again we were determined to push on.  We definitely had a good Christmas and New Year.  The pain did not go away but instead got worse. She again started taking Tylenol and Advil every 6 hours.  The area where they had treated with the 5 doses of radiation became swollen and at times stiff.  There are times she would feel tingling to her fingers or up to her neck.  At times the pain will go up her neck.  They mentioned they were not sure why the radiation treatment did not work and was told she may need to meet an orthopedic surgeon for options as well as possibly stabilize the bone.  Curious, I tried to find out what may be happening and found the possibility of the cancer had spread to the bone and was causing the pain.  They termed it secondary bone cancer as it had originated from the lung and then manifested in the humerus or any of the long bones or the spine.  Apparently, there is only palliative care in this situation.  Reading further, they mentioned a survival rate as being 6 months so I am now afraid since I had looked it up.  My wife is still at this point looking positive but I can definitely say, she is in pain and it really hurts for me when I see her in this condition.  One thing though, after taking her Tylenol and Advil, the pain shoots up first before decreasing.  So at night, she wakes up for her pain killer and then is able to sleep 1 to 1-1/2 hours after, sleeps until her next dose of pain killers and the same thing happens.  She sometimes gets into a deep sleep but is again woken up by the pain. Right now, I help her bathe and get dressed since her left arm has very limited mobility due to the pain.  It is part of my vow to look after her, in sickness and in health and I do, but I am scared about the thought of the "till death do us apart" which who know when.

Re: Caring but afraid

Posted by jorola on Jan 28, 2019 10:29 pm

Momordica‍ thank you for sharing your story. I am sorry to hear of your wife's struggles.
I am seeing several things when reading your story. One am I correct that you may not be confident on your wife's exact diagnosis (ie type of lung cancer, stage and if and where it has spread to)? Also you appear to be not confident that the doctors have been aggressive enough in her treatment or at least in explaining why they have chosen the treatment they have. You are very concerned about the pain your wife is in and what can be done for her to help her feel comfortable and sadly you are very scared of the road the two of you are currently traveling and that you may soon be traveling on alone.
First thing I wanted to say is I am glad you found this site. There are so many caring people here. All willing to support and share their experiences with you so you no longer feel alone. Others will be hoping in here as well to offer their support and thoughts for you.
I am not sure where you live or where your wife is getting treatment but you may want to look for the Patient Advocate (or some name similar to that). They are their to help facilitate communication between medical professions to ensure clear understanding of a person's whole medical situation including options such as immunotherapy and help with pain management. They can also assist in connecting you to resources in your community to help you with providing care to your wife. Another options is to call Cancer Connection (this site) at 1-888-939-3333. They may also be able to help you locate resources and help.
I am hoping this is a bit of a start to help you. Like I said others will also being along to chime in. Be sure to check back often for replies. Please let us know if there are specific questions or concerns you have that we might be able to help with.
Take care,
Jodie

Re: Caring but afraid

Posted by Momordica on Jan 29, 2019 10:08 am

Good day Jodie.  Thank you for your reply.  Initially, she was staged at 3B during a bronchoscopy done in 2012.   When they did the lobectoby in 2012, she was raised up to 4 since it had spread to some of her lymph nodes.  This was affirmed again when she had metastasis to her left lung and the brain.  Then again, metastasis to the humerus of her left arm.  So over the six years, it has either being controlled somewhat or metastasizing elsewhere. The doctor at the Cancer Agency are really caring and professional, compassionate and sensitive to the situation of their patients. The respirologist that told her that she was surely going to die of her lung cancer was in one of the hospitals, where we went to for emergency care.  I had posted previously but it is only now that I feel afraid of what lies ahead.  Scary road indeed.  But we are still hoping, staying positive and have that strong faith that it will still get better.  If by stroke of luck, a miracle, a treatment, what ever would help my wife get better or if not just to alleviate her pain.  

jorola‍ 

Re: Caring but afraid

Posted by WestCoastSailor on Jan 29, 2019 2:02 pm

Momordica‍ 

I identified in several different ways with your post. I too have lung cancer Stage 3C but still pretty early in the process. So seeing the six years that your wife has had is really hopeful to me.

But it comes to an end. It's funny how a simple statement can grab your attention and hold it. "you know you will die from your lung cancer." My wife, Yvette, recently died from pancreatic cancer. When she was admitted to the hospital we had no idea she wouldn't be coming home to continue her treatments. It all happened really fast.

What I really wanted to write about though was palliative care. I have written previously about it. Palliative Care and pancreatic cancer
We have this sense that it is end-of-life though it is so much more. But really the important thing is to get on it and realize that it is about managing symptoms - it may be end of life too but that is not the important point. Quantity and quality can be greatly enhanced . Immunotherapy and radiation may also be used as part of pain management.

So as I was reading this morning I came across the phrase "Living with cancer." It was in the context of all the language of battling and the war on cancer etc. Language that I hate. And the phrase struck me in a new way. Yes I'm dying of lung cancer. But I'm living too! And that is the part that I have chosen to think about. As I think about Yvette's last days I am truly blessed. We celebrated our 12th anniversary with Yvette in hospice care. We reminisced and had the day together.  Knowing that you have limited time left together how do you want to spend it?

Angus

Re: Caring but afraid

Posted by jorola on Jan 29, 2019 6:42 pm

My apologies Momordica‍ for not noticing that you posted before. I should have seen that.
A person may be aware of something in the back of their mind but when it is thrown in their face like the respiratory therapist did to you and your wife well yes it is a shocker; a slap in the face. Considering that she is neither a specialist nor has a crystal ball to tell the future this was also was not right of her to say this. Fair enough to mention her concerns but speaking absolutes are another thing - in my opinion anyway.
I am very glad to hear that otherwise your wife has received excellent care and that her oncologist has been very caring. It makes a true difference doesn't it? You mentioned some treatments that were tried but I did not see Opdivo or Keytruda mentioned. Were these discussed? It could be they were not right based on the type of mutation.
You are an amazing loving person caring for your wife as you are. As a caregiver myself I know that fear that can grip you, the exhaustion that can over take you and the prayer just for it all to be a dream. It is so important for you to take good care of yourself right now. Remember if you wear yourself out you won't be able to properly look after yourself let alone your wife.
Below I am leaving a link to information for caregivers. It has information on a variety of topics. Some you probably already know and do but I am hoping you may find some information helpful.
http://www.cancer.ca/en/cancer-information/cancer-journey/if-you-re-a-caregiver/?region=ab
Please take care.
Jodie

Re: Caring but afraid

Posted by Momordica on Jan 31, 2019 9:49 am

Good day Angus WestCoastSailor‍ and Jodie jorola‍ .  Thank you for your replies.  Yesterday, we got a call from the nurse practitioner of my wife's systemic treatment oncologist hoping to discuss with us palliative care.  She had opened it up the last time we met her and my wife and I told her we would discuss it but up to this point, we have not.  It may be because the idea of palliative care is like accepting as my wife's journey coming to an end, which is something, I guess, that we are not prepared for or not prepared to accept at this point but I guess sonner or later we will need to accept that is the way to go.  There are many episodes that my wife feels helpless and just starts to cry and it is really sad to see. 

Anyway, Tagrisso is already a treatment that directly targets the lung cancer my wife currently has and is it holding the cancer in her lung and the brain at bay, but it is the one in the arm that is really causing so much pain, and it has made her unable to use her arm.  The bone lesion had been growing and apparently the pain will not go away until something is done with the bone or the arm. We will be meeting the orthopedic surgeon on February 20.  Her radiation oncologist will be discussing her case with her peers on the possibility of cryo treatment for the arm and we will know by February 6. We will be also meeting the nurse practitioner also on the 6th to check on her arm.  When she takes her pain killers, for some reason, the pain shoots up really bad before subsiding which is weird.  She is now taking 1/2 gram hydromorphone together with Tylenol and Advil to help with the pain, which is somewhat helping.  

I do make it a point to take care of myself and I do not see my taking care of my wife as a burden.as I offer everything to God as Jonah did, facing all of God's trials and did not lose faith.  

We have been together now for more than 35 years (we celebrated our wedding anniversary last month), and we were hoping to reach our 50th, again God's will, and who knows.  

Take Care Everyone.

Re: Caring but afraid

Posted by jorola on Jan 31, 2019 1:34 pm

I never would think for a moment that a loving spouse like you would see caring for your wife as a burden Momordica‍ . The love you have for her runs deep and true. I am glad you are taking care of yourself too. Congratulations on being together for 35 years.  I hope that whatever time you have together it is full of love and good memories your make together.

Re: Caring but afraid

Posted by Aly on Jan 31, 2019 8:43 pm

Hi Momordica‍ ,

I'm just curious - are the only painkillers your wife is on tylenol, advil and hydromorphone?

I am not a doctor, however; from what I am reading and interpreting - she is only on a short-acting pain killer. For normal circumstances this would work fine, however; with bone pain it would be wise to add in a long-acting pain killer. This may help curb the sharp pain she receives between doses.

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This can help control pain for a longer amount of time and reduce the amount of 'catch up' required. Sometimes this can be overlooked by doctors; and it sounds like there are lot more pressing things to be reviewing for your wife's care. It may be an idea to discuss this with her general practitioner depending on how debilitating the pain is becoming.

Aly.

Re: Caring but afraid

Posted by Momordica on Feb 1, 2019 9:54 am

Good day Aly.  Thank you for your input.  Yes she is currently just taking Advil, Tylenol and hydromorphone.  This is something that would really need to be discussed with her doctors and possibly something into palliative care.  She has an appointment on the 6th and we will definitely bring it up.

Jodie, you are absolutely right, my wife and I are just looking to make good memories with whatever remaining time there is.  Sad as it may be, we may need to face reality, whether we like it or not.

Have a good day and a good weekend to all.  February is here and remember to give love to all those who we care about.

Re: Caring but afraid

Posted by Cynthia Mac on Feb 1, 2019 10:16 am

Momordica‍ , I just learned recently that there are two “definitions” of palliative. The one almost all of us know about is the one with nurses, medications, and calm settings to ease a person at end-stage of life. 

The one I just learned about, through Cancer Connection, is a treatment plan to bring a quality and quantity of life to someone who has a terminal disease. I do not know specific names of people to tag them - perhaps Lacey_adminCCS‍ can tag some folks who can describe it better than I can - but there are people on this site who have been in palliative treatment for quite some time.

Knowing this might make it a bit easier for you to have the conversation.

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