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Back again.. back in the hospital.....back here on grief and bereavement.......

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

On Wednesday David's home health care nurse said David's left lung sounded terrible and his oxygen saturation level was in the 80s so we went to ER. They did a chest X-ray and admitted him with aspiration pneumonia. Said it can get bad fast. They also did a CT of his brain and at first the nurse read the report and told us no changes and it looked good. Then the ER dr said it looked terrible and that there were TWO possible new lesions. They sent us upstairs to the neuro trauma floor. I told them not to tell David any test results until we had everything sorted out because I didn't want David to have to deal with all the crazy conflicting reports. At first they were saying that they had to tell David stuff but then as things progressed they saw what I was talking about---the INSANITY with one dr saying one thing, another dr saying something entirely different. It's been unbelievable. And then when we got upstairs the admitting dr said he wasn't sure it was pneumonia but they would treat it like it was just in case.

I met with the radiologist who now said MRI showed tumors stable or maybe even improved. No new tumors. What the heck? So I had them send everything to our expert NO at OHSU.. Our NO said tumors look worse and David is having brain bleeds and small strokes. Also said David absolutely does have aspiration pnuemonia. He said get palliative care and hospice. And---get this---maybe David should not take antibiotics and maybe this should be his time for his "exit." NO WAY!!! It's one thing to choose not to take chemo which is so deadly and makes you so sick, and it's a totally different thing to not take a benign antibiotic for pneumonia. I am NOT happy that he would suggest not taking an antibiotic.

Our palliative care dr disagrees with our NO. Because the MRI looks better or at least stable, she thinks we should get a second opinion from an oncologist here in Salem. If he thinks chemo is not a viable option, then ok. But at least we have another opinion besides the one from our NO.

My family is in turmoil. They are furious that our NO suggested no antibiotic. They think our NO is done with David since he's not doing the BBBD and they think he wants to cut David loose and focus on his BBBD patients who are doing well. I refuse to believe that our NO could be so evil. My family also does not want David to do more chemo. They are afraid it will kill him. I don't know what to do.

David has a bacterial infection in his bloodstream again. He is a high risk for bleeding. He has active blood clots in his groin, maybe in his lung. They can't treat blood clots with more anticoagulants or blood thinners because he is so high risk for bleeding. I don't know for sure if David had strokes and/or bleeding in his brain. I suspect that he did/does. He had a seizure tonight. I am frightened because I feel like things are tumbling downhill.

On the plus side... I wanted to surround David with friends and family who love him so I put the word out, and he had lots and lots of visitors today. It really perked him up and helped a lot. He even laughed out loud and smiled several times today. It's been a long time since he's smiled or laughed.

I've been talking to doctors, trying to sort thru information, trying to understand the discrepancies and differences in the doctors' opinions. It's been totally crazy but I am fighting fiercely and I am not tired at all. I have a lot of fight left. I feel like we are being slowly backed into a corner by the circumstances and events but I'm still swinging. David is worn out and sick and doesn't really have a grip on what is going on. I'm so glad that I insisted on the drs relaying all info to me instead of subjecting David to all these terrible emotional ups and downs. The stress would have been so terribly hard on him.

So tomorrow will be a day of decisions and hard choices. I think I want to suggest that we talk to a new oncologist and see if he thinks David should do more chemo or not, before we even talk to David about more chemo. I don't want to make David decide whether or not to do more chemo if its not even an option for him. I'm frightened to cut our ties to OHSU and our NO. I hope we make the right choices.

I'm glad I can vent here and write out my feelings and fears. It helps me sort out my feelings and get a grip on what I need to do.

Love and blessings,
Cindy in Salem, Oregon

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

Cindy,
It is unreal what you are going through with the doctors, and what David has had to endure at this hospital. You do know that if you stay at the same medical facility, ask for a second opinion
those NO will not contradict the first NO's opinion on treatment. Seek your second opinion from an
outside facility, just take all medical records, films etc and meet with another trusted NO.
Did they say if the blood clots that David has in his groin are traveling to his brain, causing the little strokes? Doe physical therapy come or your home health aide move his body around, limbs and rotate his body, so he does lay in position to long?
Sounds like his first doctor has moved on and has done all he wants in David's treatment, he is
playing GOD, and its not his choice, its David's and the family's choice on what is best. You did
say this is a teaching hospital or are clinical trials being done, for his NO to respond the way he has indicates that's whats happening.
Have you had a meeting will all the doctor's dealing with David's treatment- meet all at one time, large discussion group, family and doctors- one time, maybe something is being missed, with
so many opinions floating around, everyone should be on the same page at this point. Family concerns and wishes could be expressed during this meeting. When my oldest son was in an really bad accident, and in critical care for 28 days, all his doctor's and family met to discuss everything
going on- no surprises. He is doing wonderful today. This really helped us, deal with what was
happening and what we needed to look forward to.
I probably sound like I am rambling. It's just so frustrating to read how families and patients are being treated - we pay for their knowledge and skills when treating our families
who have cancer. They should respect all, by doing their best!
My prayers for you are to have the strength and courage to do what is right, and for David to
continue his extremely hard fight in the journey called life.

(((Hugs)))

Carol and Benjamin

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Carol.

Thank you for all your ideas and suggestions. I can tell that you have not been a passive passenger on Benjamin's journey-- you've become proactive and you've learned a lot! I really commend you and respect you for that!

I will probably sound like a control freak--- maybe I am --- but I don't want to get together with the drs and all the family. It would be chaos. We are all too opinionated and most of them don't know enough about the intricacies and complex issues regarding David's situation and his care. It would take days to get evevryone up to speed regarding David's history and issues. They would basically just muddy the waters, so to speak. I'm referring to our extended family---adult cousins and aunts and uncles. There's a lot of them! My immediate family---husband, three other kids and their spouses...we are pretty much on the same page and I know what they think. I listen to their input and it helps me form my choices. They are the ones who strongly feel that it would be tortuous and pointless to do more chemo. The drs all say that too, except the palliative care dr says that if David wants to do more chemo, we should at least explore that option. Looking at David right now, I have to say that it seems ludicrous and cruel to subject him to more chemo. This may be a lesson in futility. I don't think we can find an oncologist who would do chemo with David in his condition.

We do have a home health care team with therapists coming out several times a week. I also reposition David every two hours (less at night when we are sleeping) to avoid clots and bed sores. Also do resistance etc exercises. He has two clots in his groin. If they broke off, they would go to his lungs and could possibly cause a pulmonary embolism. That is usually fatal. Those clots would not go to his brain. We don't know enough about the brain clots/bleeding. I need to press for more info today when we meet with the drs. They told me yesterday that strokes are caused by two things: blockages (clots) or by bleeding. They don't know what caused David's but they suspect bleeding. I don't even know how sure they are about the bleeding in the brain and the strokes. They are saying that they suspect bleeding because of traces of iron or nitrites or something that would indicate the presence of blood in the brain. I am going to get a whole 'nother education....

We are not at OHSU right now. We are at another hospital not affiliated with OHSU. Their oncologists have no problem contradicting OHSU's opinions! I'm afraid that the bottom line is that David is losing the battle and no matter what choices we make, we are going to lose him soon. It's like we will be choosing how to lose hi....from chemo, from pneumonia, from strokes, from infection.....I hate this. I hate it for me and I hate it for our family, but I really hate it for David. I am so sad that he is not going to see thirty, not have a wife and kids, not going to grow old.....I hate it....

Love and blessings,
Cindy

Noellesmom
Posts: 1315
Joined: Aug 2010

We all have dreams for our children; many don't come to fruition because of circumstances (like David), others because of choices (like my children :) but it is still painful and sad to experience.

The antibiotic issue: I know you said your doctor said maybe it was David's time but try to step back just a little and recognize that it is possible to prolong lots of things artificially: get David's lungs back in shape just so he can have a massive brain bleed? It is hard for doctors to watch, too. Sometimes there are no correct answers and no real solutions.

Prayers have been lifted for grace for David, for you and for your family. Wish there was something concrete I could do to help.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I don't know. I'll never agree to not doing antibiotics for pneumonia but I can totally understand how someone else might make that choice.

So discouraged and sad tonight. The other oncologist took about ten seconds to decide that he would not do chemo on David either. His reasoning was that if our OHSU dr wouldn't do chemo, then neither would he. Our palliative care doctor said that's because our OHSU dr has a reputation for being super aggressive and if he won't treat, then you know that the risk is way too high.

But I'd talked with family members and we had come to the conclusion that the chemo's possible and doubtful benefit would not be worth the risks and side effects. So we wouldn't have done chemo even if they were willing to try. I am going back and forth from weeping, being numb, and just staring blankly out the hospital window.

The drs also told me that David's bacterial blood infection is confirmed. The other samples grew organisms too. They are waiting to see how bad of a bug(s) it grows.

They also said that David has "extensive" blood clots. Two in one leg, three in the other. Possibly more maybe in his lungs? No real point in testing because they can't do anything. He's already on a blood thinner and they can't risk increasing it because he has also had more brain bleeds and they suspect that he is having multiple mini strokes.

I am hoping and trying to work towards getting the pneumonia and the blood infection resolved so we can go home. I don't know how realistic that is but that's what I am hoping for.

I'll post again soon. I am staying at the hospital with David and he sleeps a lot so I have a lot of time on my hands.

Love and blessings,
Cindy

grandmafay's picture
grandmafay
Posts: 1625
Joined: Aug 2009

Just wanted you to know that I'm here and my prayers are with you. Fay

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

It breaks my heart to see that David is not getting better; I had so much hope for him... and now it is difficult to accept the reality of your nightmare. I can just imagine the unbelievable grief you are experiencing right now. I can picture you looking out the window of the hospital while your son who was so full of life is lying in the hospital bed. I am crying for you and for David.

I have not gone where you have gone but I send you all my love.

Julia

sadinholland
Posts: 238
Joined: Apr 2011

Although I have not posted, I have been following your post. I just have not been able to put together the right words I have wanted to say to you. I am still praying for you and David and you are both on my mind constantly. I just haven't been able to bring myself to respond to your posts and I apologize for that. It breaks my heart to know that David and you are going through this. You know as hard as it is, if Gods brings you to it, He will bring you through it so hang in there Cindy and keep praying and looking to God for your decisions and He will direct you to the right ones. Never doubt yourself, everyone knows you would never do anything to harm your son. You are a wonderful mom, you have and will be there for him in every way. I can only imagine what you are feeling because I only know you and David through this site and it is tearing me up to know that David is going through all he is going through. He's so young and he was doing so well. Please know that although I may not respond to your post, I am following them and praying for your entire family. It is hard for me to respond sometimes but not a day goes by that you and your son aren't in my thoughts.

Please pray for my husband as well.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you everyone, and especially Julia and sadinholland. You two have been with me a long time now. I am very very grateful for your faithfulness to me. It must be very hard to read my posts and try to come up with stuff to say to me. I read back on my posts from 2009 to July 2011 and it's like a different person wrote them. I was all positive and believing we had a chance. It's almost impossible for me to accept where I am today...and where David is.

Yesterday our hospitalist said that he does not think David has pneumonia or an infection in his blood stream. Only two of the four sample bottles grew staph and apparently that's a common contaminant in our environment so they think the organisms were on the bottles, not in david. So he took David off the antobiotic for the blood infection. He repeated the chest X-ray and the results were "stable--no changes." What does that mean? Still stable as in it still looks like pneumonia but not worse? The dr had left by the time we got the results so I couldn't ask. I don't feel like I can trust these people because I feel like we are being jerked around with the diagnoses. It's a good thing that they are saying better things instead of telling us worse stuff. I guess. I don't know if I believe them. Once again, it's a DAMN good thing that I haven't been telling David stuff because I think the stress from all this up and down news could compromise any chance he had of living a little longer.

They are pushing me to tell David that he is dying and to go to hospice. I had an epiphany... Exactly why do we have to get into David's mostly uncomprehending face and make sure that he knows he's dying? Why do we have to break his heart and scare him---terrify him? Is it really necessary? They are always talking about quality of life....well, forcing him to hear yet again that he is dying (he was told in June when he had the shingles outbreak) really cripples your quality of life. I asked the dr and he said because of legal stuff. I said " well your ER dr said that he's not mentally competent to make any medical decisions on his own." this dr asked if I am comfortable making decisions for him. I told him I wouldn't use the word "comfortable" but I definitely have the spine to make decisions for David. In the meantime, I have talked to my immediate family and they all agree and feel strongly that we don't need to tell David he is dying. He knows. Anyway, I am not all that sure that his death is imminent though I do understand that it's definitely growing closer. Just because these drs here think its close and I need to tell him doesn't make me feel like I have to do it. Especially since they aren't even sure of the pneumonia and blood infection. Even as I am writing this, a nurse is checking his lungs and saying that they sound really good.

I've also had to really duke it out about pain medicine. At home he took extended release morphine 30 mg 3x a day and 8 mg Diaudid as needed,a about 2-3 day. Now he can't swallow the morphine so they were giving him 1 mg Diaudid IV and trying to tell me that was enough since its stronger by IV. Yeah, I get that, but it's not strong enough to cover those doses of morphine and 8 mg of Diaudid. It took a lot of talking but we finally have it pretty much worked out. Drove me crazy because David is totally helpless and unable to tell us when he feels pain. What if I was not staying in the hospital and advocating for him so fiercely?

The sedation from his seizure wore off finally yesterday and he was awake and appeared aware of things. We had lots and lots of visitors and we told funny silly stories and laughed and talked a lot. David listened and even smiled once or twice. We are in a terrible dark place in his journey, but even so, there are moments that are so sweet and special, and I will cherish them forever. I am so grateful for the family and friends that have been so faithful and supportive. I could not have survived this without them.

Julia, I am so happy that Kat is fighting so fiercely and is doing so well. I love to read her FB page and see how she is enjoying life. Sadinholland, I know you are going through a similar hell as I am going through. I'm praying that God will continue to give you the strength, grace, and peace you need to get through this time in your life too. I am praying for Jacob too-- for peace and for no pain.

Blessings, peace, and love to you all,
Cindy in Salem, Oregon

Noellesmom
Posts: 1315
Joined: Aug 2010

Have spent many nights at hospitals with loved ones who could not advocate for themselves and because I have the mouth and the spine out of all three of us sisters, it's me who has to keep up with what is being done and when and how and why. I know you are exhausted - don't even know how tired you are.

You and David are blessed to have each other. This is so hard to go through, I know.

Hugs.

Raani01
Posts: 70
Joined: Mar 2011

Cindy, I am going to talk to you, against the advice of my well intentional friends's advice.They think I am emotionally unstable and should not share my thoughts to anybody for a while. God has taken Jacob home on July18th while I was kissing him and my kids holding his hand and his brothers/family praying around him.

How am I doing now?!I got comments from family and friends that I behave stronger than most.Jacob used to tell me the people who look very strong might not be that strong when you are not looking. You can’t find no more perfect example than me for that. Today morning the emptiness creeped in me from somewhere and I burst out demanding my kids that I wanted to see their dad and they had to hold me tight for half an hour before I could calm down. That is where I am now.

Let me talk to you some out of millions of things I wanted to talk...
On April 3rd after a seizure and ER admission,our NO wanted to talk to me on the phone.I still remember our NO was telling me ntohing left for him and " it is time for you to accept the reality". In my desperation, I asked him to try Avastin one more time because his tumor shrunk significantly with one infusion on a positive note, but gave him bleeding on the downside. I thought what was I going to lose!.NO told me it would be a malpractice for him to give Jacob Avastin again because of the high risk of bleed. He added saying that if I wanted chemo I had to find another NO.Then my kids made me to take a hard look at the situation.One year ago we went to many NOs and this was the only NO, like God sent, agreed to try a new chemo,CCNU,and we had Jacob one more year with us because of that.And I knew in my mind our NO is desperate also. I just wept silently.

I took Jacob home on Hospice. I was easily convinced at that time that hospice is the best option for Jacob. Hospital bed was a big convincing factor for me. He was bedridden ever since. I remember the talk again. No antibiotic for his infection from an abscess he had (in Jacob's case,the infection didn't get in to his blood stream, it was local).Their explanation was why to give him more medicine when ther is no hope, everyhting became under one word "comfort care". I remember, in my anguish I told the NO point blankly I will let my husband die only from the tumor,not from any other reason like not treating him for infection or anyhing that I have control over. Cindy, Now I know how you feel.At the same time, I also knew why doctors are saying that. There is no right or wrong way in this kind of situation.We do the best as we think the best with our uncondional love. So they prescribed him antibiotic and I leanred to pack his abscess ..I took FMLA and took care of him, I made sure I was the primary care giver and hospice staff was there to support me. I have to tell you the staff was wonderful and I am gladI had them. The hospice doctor was the one enthusiastic ( a lot more than his NO)about treating Jacob and I was little surprised to hear the same for you too.In one month, Jacob was free from any infection, pain and started sleeping , eating, comfortably.

After that, it was gradual decine for Jacob ,but I never gave up hope until the end.He stopped eating 3 days before. I was with him every moment after that until he took his last breath.

Looking back, I have not much regrets, I am grateful to have the feeling that I did my best as i knew. I miss him so much, the emptiness is killing me. I got so used to doing things for him like cleaning his wet clothes, BM, feeding,bathing, just lying down by his side. Our family did everything;eating, talking,visiting,sleeping all in our master bedroom. Last week i sat in our family room after about 3 months for the first time, I thought somebody bought a new TV becasue the TV looked so big.

One thought to share with you.Collect more and more memories as you can. Say and do everything to David when he is alert. I wish i could capture more memories of the good moments. I took some pictures and videos , but I was always mindful "not spoiling a good moment". Jacob and the kids never liked me taking picures while we have agood time as a family saying "the sight of a camera spoil the moment". Again, I did as I knew the best and that is my comfort.

I went to mass yesteray and lighted a candle praying to give David, you, and your family the strength and the faith to face what God plan for you. Because that is what I always prayed and still pray for my family.

with love,
Raani

Raani01
Posts: 70
Joined: Mar 2011

One of my best friends told me (with very good intention) I am caring Jacob too well that she thinks was selfish on my side. In her believe, giving anitbiotic and nutrious food very diligently were prolonging his life unnecessary and "selfish".I remember I was sooo sad and burst out in front of my kids and my kids comforted me saying they liked what I was doing and we would continue to do the same.I still couldn't believe my friend said that to me!She is still my best friend though( she is an oncology nurse and I am an engineer and my analytic ability showed me where her comments orginated from!).
Cindy, please remember I am still grieving and the same friend told me I am emotionally very unstable.
With prayers and love,
Raani again

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Raani, I'm so sorry that Jacob is gone! I could feel your agony and the pain of your grief as I read your post. How I hate what you are going through...

Thank you for writing to me and telling me what you've been through, what you felt, the choices you made. You went through what I am going through right now. Just a few hours ago, with tears and deep deep sorrow and a lot of turmoil, I told the doctor to withhold lovenox shots (replacement blood thinner for pradaxa pills that David can no longer swallow). David hated the twice daily shots and was so relieved when we were able to switch to pradaxa pills and he didnt have to take the shots any more. I couldn't add that pain back into his life. And I also took into account the bleeding risk factor from the blood thinner, and the fact that he has been getting more clots while on a blood thinner. The doctor felt that was the right choice.

Our hospitalist said David's chest X-ray is improved and David can go home in a few days, after we figure out what to do about his swallowing issue. But he says the bigger issues are still there. He said that he recommends letting "nature take its course," meaning let David die from the next issue that comes up. The dr suspects it will be aspiration pneumonia for real next time, or maybe some other infection, or a stroke or brain bleed.

He is sending David home to die. I will probably start looking into hospice care. But I don't want them if they won't treat an abscess or treat for diabetes and things like that. I've heard too many things second hand and I need to talk with hospice myself. But every medical person and everyone who has had hospice for a loved one is telling me I should get hospice. I know I will---I just didn't want to do it until David was unconscious all the time and he wouldn't know.

I sat in a chair by David's bed here in the hospital and watched while they pricked his finger to test his blood sugar level. His hand was totally limp and he is so completely helpless. It was heartbreaking to me---my grief is so sharp and raw, like when I first found out about the cancer. Only three years ago he was running and jumping and shooting baskets and laughing. I'm helpless against the grief that seems to swallow me up. I know you understand how I feel.

Raani, thank you again for writing to me. I know it must have been so painful to write about Jacob an relive it all over again. I'm praying that God will give you the strength and peace you need to get through each day. You have amazing kids and I thank God that they are there supporting you and loving you. What a wonderful blessing it is to have sons like that....

Please keep in touch and let me know how you are doing.
Love and blessings, strength and peace to you.
Cindy

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

Hi Cindy,
You really are a fighter and a great advocate for David. I do agree with you, one does not need to tell anyone they are dying, they already know it. Doctor's and medical staff, sometimes are lacking in compassion after awhile. It's become to routine when dealing with critical patients, to where feelings are no longer considered.
Meeting with Hospice will help you decide which avenue to take. Choosing for them to come into
the home is a big family decision. I remember clearly, the day my friend said hospice would be starting in a few days. She was relieved, knowing that her pain and suffering, would be less of
a physical burden on her already worn out family. However, she didn't want any hospice volunteers to come to her home and sit with her. That's where I came in. The nurses that were sent to manage
her care were very compassionate, loving and did everything in their powers to make her comfortable to the end. Her family, was counseled by these nurses, which relieved their anxiety and stresses. Charlotte's biggest worry, was the strain on her family, and having hospice did offer her peace of mind. I on the other hand was a wreck, not wanting to loose my friend. We had some of the best
quite moments ever. Hand massage and holding is very comforting.
My heart goes out to you and your family, no time is really the right time, it almost like jumping off a cliff and hoping for the best. I do believe in our Lord, but why oh why does he make life so hard. May you have the strength and ability to carry on. You are one exceptional caregiver,
but, after all we are mother's. We would do anything for our children!
Prayers are being said for your David and your family, may you find comfort, strength and
a little ray of sunshine!

(((Hugs)))

Carol

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Raani, I forgot to say that I think your well meaning friend was wrong, and it was absolutely the right choice to give good food and antibiotics to Jacob. I'm so glad your kids told you that you did the right thing. Good for them! You made the right choices for your family. I would/will do the same for David.
Love and blessings,
Cindy

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Raani, I forgot to say that I think your well meaning friend was wrong, and it was absolutely the right choice to give good food and antibiotics to Jacob. I'm so glad your kids told you that you did the right thing. Good for them! You made the right choices for your family. I would/will do the same for David.
Love and blessings,
Cindy

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

This am the speech therapist came in to do a swallow evaluation. David completely totally failed it. She had to suction out his mouth so he wouldnt aspirate and all that she'd tried was a tiny sip of water. David's eyes are open but he is even less responsive than yesterday.

Now we are back to the feeding tube issue. David had said he didn't want one but our family is very emotional about the thought of standing by his bedside watching him starve to death. My family is telling me that he isn't able to make good choices for himself. I don't know what to do. David was very clear about wanting a breathing tube, wanting to be resuscitated, wanting everything possible done to keep him alive as long as possible, and a peg isn't nearly as bad as being entubated. The therapist and I explained what a peg is like...kind of like a port, which wasn't that bad. I asked David again about a peg and now he just looks at me. No nod, no head shake. He just looks. But he looks like he understands. But I don't know if he does. I don't know what to do.

The therapist thought it might just possibly help David if we put something flavored in his mouth with a sponge, just so he could get a taste. Maybe it might trigger a swallow? She asked what he really enjoyed drinking, and I said, "Starbucks," and without any warning, my dam finally burst and I cried my head off. David never showed any reaction at all, but he was looking at me.

This is an absolute unending nightmare.

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

I will be (virtually) with you until the end.

Continue to post, I am reading.
I don't think there are no right or wrong decision anymore. If it helps you can ask yourself if you would want a peg tube if you were David. It is a personal decision. In his shoes, I would not (unless there was still a chance to do chemo).

My sister also loves Starbuck. I remember your descriptions of David going to get Starbucks. He was so happy. Hang on to these precious memories. This is the real David, the one who plays basketball, is funny and witty.
all my love,

Julia

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

I will be (virtually) with you until the end.

Continue to post, I am reading.
I don't think there are no right or wrong decision anymore. If it helps you can ask yourself if you would want a peg tube if you were David. It is a personal decision. In his shoes, I would not (unless there was still a chance to do chemo).

My sister also loves Starbuck. I remember your descriptions of David going to get Starbucks. He was so happy. Hang on to these precious memories. This is the real David, the one who plays basketball, is funny and witty.
all my love,

Julia

sadinholland
Posts: 238
Joined: Apr 2011

Oh Cindy! I am praying for you and David. Just ask God and know that whatever decision you choose, it will be the best one for David. I am so so sorry! You keep posting. We are all here for you. Prayers and blessings to you and your family.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I met with the doctors today, and with palliative care. I overcame my fear, dread, and HATRED for the concept of hospice, and I authorized hospice for David. Our palliative care doctor addressed my issues and concerns. Hospice will treat for everything except the tumors. They will manage David's pain and maintain his comfort, and if they cannot help David, they will immediately will admit him to the hospital where he can get the appropriate treatment. If I am in any way unhappy with any aspect of hospice care, I can terminate it at any time and go back to our home health care team.

I told them to go ahead and put a feeding tube in. The procedure is scheduled for tomorrow morning. When I ask David questions, he doesn't answer....except when I ask if he is hungry. He will nod when I ask him that. He watches us when we eat. He will turn his head and his eyes follow us. For that reason alone, our palliative care doctor thought we should go ahead and place the peg. I hope this is the right choice.

Raani, thank you so much for sharing your experience with me. You gave me the strength to take these necessary steps. I don't think i could have faced these choices if you hadn't written to me. You helped me to begin to have a little peace of mind about hospice. Thank you so much, Raani, and God bless you.

Noellesmom, you'd think that since I'm old (54) I would know by now to never say never. I'm referring to my comment "I'll never withhold antibiotics for pneumonia." I hope I didn't offend you, noellesmom, by my prior response to your post about pnuemonia. It takes me a long time to work through all the levels of emotions and to get to a place of acceptance and understanding. The palliative care doctor told me that pneumonia is called "the old man's friend" because it's a "good" way to die. She explained that it's not the way I feared....I imagined David fighting for breath, slowly suffocating, in agony, struggling....she said its not like that at all. Carbon dioxide builds up and you just start sleeping more and more until you don't wake up and gently pass. The thought makes me crazy but I am hoping for a peaceful death for David. I am really hoping and praying that I don't have to make the difficult choice on whether to treat a future pneumonia or not. May God spare me from that choice.

I still have so much fight left in me. I want to scream, argue, beg, research, persuade and fight...I want to keep fighting, fighting, fighting. But I have nothing left to fight with. david is slipping away. The cancer is like a tsunami that is overwhelming me and David. No matter how tight a grip I have on David, he is going to be swept away from me.

I told the doctors that David is a DNR.

Here's a Scripture that I feel fits David: " I have fought the good fight, I have finished the course, I have kept the faith; 8in the future there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day; and not only to me, but also to all who have loved His appearing." 2 Tim 4:7-8. David is losing this battle, but he already won the war. His soul is safe for eternity.

Love and blessings,
Cindy

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

So many of us have come over here to follow you and David on this horrible road you have to travel. I hate this road, that I too had to travel. I hope that you feel the love from us and that you know that you are not alone. These days ahead are not easy. I remember them all to well. I think back to those days with my sister. I could do so very little. The only thing I could do is try to bring some little pleasers into those days. My sister wanted rootbeer floats. She was having a hard time swallowing too. So I made them into little frozen suckers. So at this point I would ask someone to go to starbucks for you and get Davids favorite coffee drink and freeze them,and let him suck on them. So that he can enjoy that taste.
My heart goes out to you and your family. You and David are in my prayers.
Love Brenda

Girl2010
Posts: 26
Joined: Jan 2011

Cindy, I haven't been on here much but still check for updates frequently. My grandpa got diagnosed with prostate cancer the week before we lost my brother and now has stomach cancer so things have been... Busy. You and my mom are so so so similar... My parents didn't want hospice at all... Finally gave in and we used them for 3 or 4 weeks... One nurse we had was so sweet...we grew to love her. Stopping the chemo was also a tough decision... Even though it was the chemo that likely killed him. My brother was just like David at the end... Not really there. Couldn't swallow at all- was constantly fighting "outside" problems... UTI's, loss of body temp., kidney problems... My heart aches for you because I know where your at ... And there's nothing I can do or say to make it better. I just hope for peace.... Know, truly know you (and your immediate family) are the best people David could have in his life. I've heard more cliches in the last year than I ever want to know (god doesn't give you anything you can't handle, bad things happen to good people...etc) and while true, I just want to tell people not in our shoes to shut up because there's no rhyme or reason why this is happening. Id give anything to watch my brother play one more game of basketball, or to chase my son around the house... I think about you constantly. Prayers and more prayers...

Raani01
Posts: 70
Joined: Mar 2011

CIndy, I thank God for making me to write when you said my writing helped you in some tiny way to make your decision. At the same time, I felt incredibly sad knowing the situation I helped (I wish it was to help you to enjoy something in life!). I hope you will find comfort in the hospice staff. From my experience, the approach of nurse and doctor in hospice was very different than in dealing with our NO and chemo treatment. What I felt was the focus of the hospice was not on my husband, it was how to make me happy. They don't initiate any treatments like antibiotic or insulin (I requested to make Jacob's blood sugar under control to avoid future abscess).Their suggestions always to make Jacob comfortable using pain meds. But, they were very open to address my wishes in any way possible ( I remember, the nurse told me she didn't know how to give insulin injection:-).And I had to watch the bath aide didn't use the same wash cloth to wash his face and butt. After I saw it one time, I didn't let her alone ,we both gave bath together(it was hard for me to do alone!). And tried not to let the aide to wash Jacob's face and head, I did myself (Jacob didn't even like ME touching him too much in good times, lol).One day, one of my boys was with his dad when a substitute bath aide came and she shaved off his moustache which made me very upset.Cindy, you are an amazing woman and I learned a lot about "love" from you. I am going to list my e-mail here, if you ever feel like learn about my experience (I don’t know how to give it in any other way), cherucheriljr@msn.com .

There are lots of similarities between things happened to Jacob and things happening to David now.One big difference is that Jacob lost his cognitive ability before he was bed ridden. Even though he couldn’t express his feelings and he looked like he was not aware of things happened around him, I will always wonder whether he knew about his situation.
Take care Cindy! with lots of love,
Raani

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