Another update on our journey... (Brief background: after over a year of failing multiple treatments to control his cancer, my husband decided in April that he did not wish to continue pursuing treatments other than palliative care. On May 27 we were accepted into a Medicare hospice program.)
So far our experience with hospice has been very positive. We've had in-person visits from our primary nurse and social worker. We get daily calls from the nurse to check symptoms and monitor medications.
My husband was initially diagnosed at stage IV due to an intractable pain in his hip. He's been on oxycodone/hydrocodone for five years. Hospice started him on methadone as an alternative long-acting pain reliever, with ocycodone for breakthrough pain. He also relies upon gabapentin, dexmethasone, and acetaminophen.
Methadone is tricky to initiate and titrate, which is why it is seldom used outside of hospice/palliative care or specialty pain management clinics. It's lipophilic, has a long half-life, and takes a while to "load in." The first week was pretty rough as the dose cannot be escalated more frequently than about every four days, so lots of breakthrough meds were needed.
But now that the correct dose has been reached, methadone has completely changed his relationship with his pain: it is noticeably better at controlling the bone pain and he's also been able to reduce the gabapentin, dexmethasone, and tylenol. He has more stable pain control than he ever has through the course of his disease.
Severe anemia was another issue that we desperately need to address. In early May his hemoglobin was 9.3 and hematocrit was 29. We called our oncologist's office and they basically refused to consider a transfusion unless he agreed to more treatment: "It's just the cancer..." (I mean really, WTF????) Three weeks later his numbers had fallen to HGB 6.7/ HCT 22. I printed out the lab report and handed it to the hospice nurse on our first visit, and she agreed he needed a transfusion as soon as possible. He was literally dying before my eyes, but it still took another week before we got in for the transfusion. This past Thursday he got two units of PRBC (packed red blood cells) as an outpatient, an ordeal that took eight hours of unremitting pain (those puffy infusion chairs are torture for someone with advanced bone pain). If my husband wasn't the man he is, he wouldn't have been able to bear the transfusion and would be on his deathbed by now.
Now, with methadone controlling his pain and adequate blood in his body, he feels better than he has in several weeks. He's working through a flareup of oral thrush but we're dealing with that as well as pretty severe edema and, of course, constipation from all the breakthrough meds he's had to take. Daily calls from the nurse make it much easier to get on top of issues as they arise rather than having them get to a crisis state.
They say that hospice can prolong life, and that is probably true in our case. We are getting better care than we ever had in oncology. It's tragic that a person has to be near death to receive this kind of targeted, personalized care. (I imagine if a person has gold-plated private insurance and access to a top cancer care clinic they might get similar care, but we're po' folks and have to make do with the SOC offered at our regional hospital.)
Today Steve took himself out to the garden and potted up a few plants, watered the greenhouse, and brought up a few buckets of firewood. A week ago he could not walk across the living room without getting out of breath.
One day at a time, we continue to live the best life possible.
Blessings to everyone. May your days be long and full of love and laughter!
Written by
WildRose6
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That's hard to read but ends on a very up note. I can only imagine how this all takes a toll on you as well. I really appreciate this insight into advanced stage disease. I hope from here on you will have what you need before you need it.
Yay up and bringing in firewood! Thanks for posting. Seems like oncology staff are great at treating cancer, but there is so much more. Thanks for note about transfusions. I mean wtf.
Transfusions are apparently “treatment” for the cancer. I found that out yesterday after signing consent for transfusion. ER nurse was literally prepping the plasma infusion in my husband’s room when doctor entered comfort care orders into the computer system, so RN had to stop immediately and turned off all the vital monitoring equipment displays.
SalishSoul, it's my understanding that "comfort care" orders are for people whose death is immanent. I hope that this stage of care consistent with your husband's Advance Directive and has it been done after consultation with you.
My husband is ambulatory and fairly active, and so the transfusion is considered palliative care.
(Edited to re-phrase and remove personal question)
Thanks for sharing these details about hospice care. We don't see much of that here and it helps many of us to learn more about what may eventually come.
It sounds like your husband is getting some of the advantages of hospice that many come too late to receive. Most people go into hospice when they only have a week or two to live and don't get some of the benefits. I saw this happen with my father. I do think he could have had a better quality of life for his last few months if he'd gone into hospice sooner.
Wishing you the best in your journey and thank you for sharing.
Yes, I too have encountered resistance when it comes to transfusions...Seems there is just not enough whole blood or red cell concentrate to go around. Terminal cancer patients are on the bottom of the list when it comes to getting a transfusion. The trauma department and the E>R> get first dibs...
Fairwind, I really got that sense too. "You're going to die soon anyway so why waste blood on you?"
Cancer centers will gladly transfuse a person if they're getting treatment, even if that treatment isn't going to keep the patient alive for more a few weeks.
The cynical side of me says that as long as the Cancer Industrial Complex can make money off us, they'll give us whatever we want. As soon as we stop treatments they have no more interest in us.... eff off and die already....
As usual, you have posted a magnificently intelligent, perceptive, and knowledgeable description of how things are going. I don't know if you're a professional health worker, but you certainly have the brains and the attitude to be one. Thank you for your postings that have shown us so much about how to think about prostate cancer and its treatment.
I'm certain that all of us on this group are wishing the best for your husband and yourself.
After donating gallons of whole blood and pheresis for blood parts hundreds of time, now I may be cut out on the receiving end. Not fair, but who ever said life was fair. Thanks for the hospice up date. I've seen this great treatment and improvement in QOA before with cancer buddies. They are allowed to die with caring hands and dignity which some MO's just don't know how to supply. My former MO just said "you are in full remission, have a nice life and goodbye." Life is good. Love your time together. Doug
Shooter1, I'd say resist that thought about transfusions. You, and every other person, has the right to treatment, even at the very end of your life. What's the difference between getting transfused so you can get one more round of chemo and getting transfused so that you can be more comfortable in the last weeks or months of life?
The fact is that severe anemia is an awful way to die--I saw it happening in my husband. I don't know if this is the proper way to describe it medically, but I could tell that his body was so starved for red blood cells it was beginning to scavenge his own tissues for nutrients. Everything was breaking down. His mind was slipping as his brain starved for oxygen. It was truly horrible. Every day brought him closer to a terrible death.
Transfusions are a vital, life-extending treatment for advanced cancer. Do not hesitate for one second to ask--demand, if need be--that you get a transfusion when you need it. And another, and another. It is your right as a patient, and as a human being.
Thanks for the heads up. My PSA today is up 239% from last month...PSADT 12 days. Somehow it's jumped into hyperdrive. 3 other items in blood test were out of range for first time too.
All look to be kidney related... The fun just goes on and on... I plan on holding on for a while yet. Life is good. (still no BAAAD symptoms)
Finishing radiation therapy tomorrow. 2 hot bone mets on NaF18 scan. Back to MO week from Tuesday. Wish me luck with Provenge in August.... Lots of driving, but hope it will be worth it... I drive to treatments and my wife drives home... 9 hr days if we don't stop to eat.. Life Is Good. Started Xgeva last month.
Thank you so much for your informative and helpful post at such a difficult time. I hope I have half your strength and loving determination if such a time comes to me as my husband progresses. Best wishes to you both. Hospice care in the UK is rather different but your post is a good reminder to explore options before it becomes critical.
This could be a very helpful post for so many here... thank you for sharing these details. It is certainly eye-opening to know how much more the hospice care might show concern for the patient when compared to the oncological care.
Sometimes it seem that SOC is so focused on the primary disease itself, and on the protocols and the "standard" insurance-approved treatments for the disease, that the individuality of the patient becomes secondary. It is good to be reminded that hospice is more about the PATIENT and less about his disease and his insurance company.
So glad to hear that your beloved’s pain control has improved his QOL (and yours I’m sure) . As you so eloquently detailed hospice can certainly prolong life and certainly a willingness to do so. I saw this in my professional career as a physical therapist where hospice care was truly a God-send. Blessing to you and your beloved. Praying for you both for God’s comfort , peace and mercy and discernment for the medical staff caring for your husband, in Jesus name.
Thank you for sharing your story. I like your approach. I'm happy that hospice care has been so helpful. I wish you both lots more time to enjoy what remains of your lives together.
Steve is still doing manly chores. What a guy! May you both get love and light when it’s needed the most .🙏❤️
Yes! That's why hospice is so good for us--they are helping Steve to control his symptoms and so be able to continue engaging with life as much as possible.
Waiting to enter hospice until the very end misses a lot of the benefits that can be gained.
This is wonderful. So entering hospice earlier than later can spare undo suffering. I Will remember this. However we know that all Stage #4 pc treatments are only palliative. We just don’t like to admit IT. You are an excellent life partner. He is blessed with you 🙏❤️
Lulu700 as we learn more about hospice we realize how important a tool it is in the toolbox of all Stage IV patients. To qualify, a doctor needs to certify that the patient has six months or less to live--but once you are accepted into hospice, you are free to revoke it and accept treatment at any time and then go back--so it's not a one-way decision.
I highly recommend finding out what your options are for local hospice organizations. We are blessed to have a fabulous organization here (Hospice of the Northwest). If there is more than one option it pays to do your research and find out which one would serve you best.
For me, the peace of mind of having someone to call 24/7 has been a godsend. For my husband, finally having adequate pain control is priceless.
We all should learn to accept help . This is a ver positive post . It’s good Using all available options .. please stay strong yourself .. The emotions of caretaking anyone in pain is immense .. WHERE would we be with out some one caring for us? The answer is hell on earth. Even in suffering if we have love it’s worth it. Love for the potted plants, the garden 🪴, a wife’s love .. nothing is better … ❤️🙏
My father dx Glioblastoma 2011. We turned to Hospice after treatment failed (as it always does with this disease, but my Dad's failed quickly). They were Life Savers! Just incredible. Can't say enough good. I was terrified of calling them, but what a good decision. My Dad's QOL the last few months turned around unbelievably! Glad to hear you are having a positive experience also...although sorry any one is in this position.
You have my support . Each wife and partner will likely face the same . The flesh is weak . Save our souls and build our spirits with love while here. Thank you for sharing with us. 🙏🙏🙏Payers for Steve to not suffer .
Thank you for this; it is helpful to all of us. I have watched dedicated, professional, and competent hospice nurses impact scores of lives - taking away pain, giving energy, even seemingly restoring "normalcy." I am so glad you have been able to enter into a relationship with them. They will help your husband live, and when our disease has run its course, they will compassionately help his transition to death. They will be help you as loving companion as well.
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