deb10653

Dave has been gone just over two weeks and the pain is pretty unbearable at times but at other times the relief that he is no longer suffering is stronger. I feel guilty at times that I am relieved, the feeling of not worrying, constantly worrying is no longer with me, do any of you know what I mean? Today I went shopping, really shopping for the first time since early March, it was a quick trip to get a nephew's birthday present but it was a bit unnerving after so long of being mostly trapped in this house or at Hospice house. I know my "new normal" is starting and I have a ton of adjusting to do, logically I know that the day will come when this ache is not the first thing I feel always and that I will not cry myself to sleep. I try to be grateful and thankful that I had such a wonderful marriage and we had so many wonderful memories, so many do not have as much time as we did or share as much, yet I feel robbed and angry also. Not having children makes this harder but to have "survivors" would be a poor reason and we actually discussed that twenty-five years ago, his daughter is as distant as ever and has made up a life with her dad that never existed in order to escape the guilt. I learned a lot on the cancer journey with Dave, I met some very compassionate and caring people and now know how to recognize an overly aggressive doctor and how to handle that situation should it arise again. I learned about hospice and will be forever grateful for their caring ways the last few days, his pain was so unbearable and so hard to watch but perhaps God's way of making the letting go easier on me. I am not sure why I returned here, this board answered so many questions for me and helped me feel not so alone, now I truly am alone and I know I will survive and that Dave is watching me as I go on this journey without him. Thank you to all of you that shared a part of this journey with me.

I haven't been around much lately, Dave entered Hospice House in severe pain last Sunday and the pain just kept increasing. I was praying for him to go and get out of the pain and he finally did yesterday. I will miss him more than I can say. The hospice nurses were so frustrated trying to keep him comfortable with the bone pain, increased almost hourly it seemed. I wish those of you still fighting the best on this journey, I will always wonder if choosing no chemo would have given us more "quality" time but realize second-guessing is not going to bring him back healthy. Thank you for being here and answering questions and just listening! Deb

I think you did a very good job on very tough subject but I agree that the visiting is a bit vague. Do you want them to travel and stay elsewhere but come and visit for a few days? I do not think they should be offended but I'm finding myself that words can be taken in a lot of ways through e-mail and phone when it comes to family away. You are doing what is best for Larry and in the end that is what they should care about. Deb

So sorry for your loss but sounds like you handled it beautifully and your mom was very proud of you I'm sure! Deb

Must be natural feelings, you describe exactly what I go through and I think I am still normal. Be thankful as I am that there is this place to vent and share and try to hang in there, you are dealing with so much my heart goes out to you! Deb

Oh Gail I am so sorry to read of this setback and totally understand what you are going thorugh since I am having to do this alone and with Dave's lack of mental stability am having to make the chemo/no chemo decison this week withour his input, this damn disease just seems so unfair! I hope the chemo works for Hank and you can find a Hospice to help with chemo and what else is down the road. I will do that transition shortly, from the palliative hospice to full blown, they will help and ease your worry people tell me. Hang in there and make the most of the time you share togethe! Deb

I updated Dr West on the things that have happened since the Brain MRI with Dave and thought I would put a message here. Dave's "brain fog" is still present at least half the day if not more, gets very frightening when he forgets how to eat or what to do in the shower???? His pain has increased to his back, new spinal mets were found on the last CT Scan and guess now that the radiation is on his shoulder he is feeling others. None of us know what is causing his poor mental state, has been four weeks tomorrow since chemo and the narcotics are still present, just not sure but it is seriously diminishing his quality of life. I have made the decision that unless he is out of the fog by Tuesday next week we will not have the second line of chemo, Alitma. If some one could tell me he would not have side effects or it would be successful I would go for it but for now he is so beat up already it seems and has not come out of the third session with Carbo/Taxol/Avastin well. I pray I am making the right decision and that we will salvage a few good weeks/months yet??? The Palliative Care division of our local Hospice is helping with the pain management and I suspect regular Hospice will be involved in a few weeks if things do not improve. As Dr West said, so many people wish they had called Hospice sooner, since it is only the two of us and no local family I think it best to consider them sooner rather than later. This has been the hardest ten days, seeing him like this is so very hard and I hope it is a "stage" and not here to stay but only God knows. Deb

Gail I hope the new plan is a success and you get to take him home soon! The days with no forward movement are very difficult, we have had so many setbacks lately that I understand your desire for something positive and I hope you get it. I am so glad that the chemo is being tolerated so well and pray it will continue that way for the both of you. Deb

H Dar, just to let you know you are not alone! I am struggling with this very same issue at our house with my husband Dave and after almost a month of no chemo but still on the oxycodone, well he is still fuzzy most of the time. It is very frightening and I have finally had the palliative care division of our local Hospice help me out, they charge and insurance doesn't cover but is a sliding scale and will work with the pain management, unfortunately they also do not know if it is meds or chemo or pain or what or combination??? I hope your mom has gotten some relief, I have been told by all medical persons that there is absolutley no need for any patient to be in pain these days. I hope your meeting this morning went well and you found something to help your mom. Deb

Denise, I have been absent but just read all you are going through, I hope you can somehow stay strong enough to do what is best for Tom and for Jayla and that the numbers and people you can call will help you! I will keep you in my positive thoughts, Jayla and Tom are very fortunate to have you there and fighting for them! Deb

Dave's has only one daughter alive and yes we got a sappy card but the funny thing here is we for many many years got none! She is many many miles away and better about calling now, too little too late in my opinion but her dad seems to usually appreciate it no matter what! Hope Tom has a great Father's Day, Dave is not doing so well and I am just hoping for a quiet day. Deb

Dave's voice would get weak and raspy with the Carbo/Taxol/Avastin chemo but by the third week and just in time for another round it would improve, now that he is off that regiment I am hopeful it stays normal but as everyone said each cancer and each patient are different. I hope you see an improvement. Deb

Oh Gail my heart just aches for you, how terrible to have that room switch done at such a terrible time. Do not give up hope, Hank is fighting and being a realist is good but you also need to hang on to the positive thoughts also. I know it is hard, we have married these guys and made them our lives and to have it stolen from us is overwhelming but why they are here we need to make the most of it. I pray the new chemo will work, this breathing issue is so serious and must be dealt with but perhaps they can help both problems while he is there. My prayers are with you... Deb

Well we were very fortunate, I feel, and saw our normal oncologist's partner this afternoon who we have seen before and really like! He was in total agreement with me that the pain and quality issue must be addressed. He was not sure of the cause of the mental confusion but wants to rule out brain mets so we will have a MRI tomorrow morning and then will see the radiation oncologist tomorrow afternoon. It is expected that there will be 5-10 sessions of radiation and we will see our normal oncologist on the 24th to see about 2nd line treatment, Alimta was discussed. I am feeling better about making this decision and am praying the two weeks of no chemo and the radiation will help me see improvement. Thanks again for your input Deb

Wow, so sorry you are having these problems at this time, family is supposed to be supportive! I definitely agree with a meeting wth an objective but knowledgeable outsider and also with posting or someway educating your brothers on the dangers of low blood counts and other matters concerning the patient, if they care they will pay attention. Good luck and I will be thinking of you! Deb

Thanks for all your replies, Dr West answered very promptly and actually verified for me what I have been thinking so am feeling better about this decision. I wish I was more comfortable with Dave's oncologist, in our first meeting he "assumed" I was Dave's daughter and it started us off on the "wrong" foot of sorts! I am sure he will listen and hopefully we can come up with a plan that will satisfy the quality of life issue now and also still progress on the quantity also. I will let you know what happens. Thank you again! Deb

Thanks Randy, I posted a "question" to Dr West on Grace site. Deb

Dave's forgetfulness and foggy brain have progressed to the point where this is not "living"! I am going to call the cancer center tomorrow and see if we or I can get in to see his oncologist and discuss if this is chemo/narcotics/brain met???what and no matter what I see no reason to have the fourth rotation of this chemo mix with him in this state. I am not giving up but I think he needs to be able to make decisions for himself and at this point he can't. The pain meds are a contributor I'm sure so will discuss localized radiation for his shoulder and perhaps can cut back on the narcotics. The carbo/taxol/avastin regiment showed progression of all tumors after 2 rounds with suspiscious changes in his shoulder tumor, can it matter if we stop at three and do not do the fourth round? I wish there was someone I could bounce this off of that would understand but his daughter will have an anxiety attack and accuse me of giving up... if you aren't here day to day to see the changes, is hard to explain 1000 miles away. Can you do radiation and take a chemo break and not cause irreputable damage to the outcome of other chemos? Just a lot of questions circling this morning, am so thankful he can sleep and is coherent sometimes, able to do the bathroom and things on his own yet with help getting up at times. After two months I know this journey is just starting but just feel there needs to be more quality empahsis and not quantity...anybody understand what I am saying? Deb

Oh Denise, I understand Dave complains so much about the pain after that dan shot and they told us Claritin but with the bone mets being pain enough and the narcotics he is on, he tolerates it as best he can! I hope that Tom is doing better today and that you got into see your dr and are having a better day! Who got the heating pad? Deb

Gail I am so sorry to hear this. I know that you will make the right choice when the time comes but do not give up hope, cross the bridges as they come and I pray the breathing will improve. I will be thinking of the two of you and praying he improves. Deb

I can totally relate to this, my husband is still reluctant to admit it is lung cancer. His symptoms are all from the bone mets so he talks to everyone about this tumor on his right shoulder, never about where it started or where all the other are. I let it be... denial is understandable I guess and since I am the researcher and the "big mouth" in this duo it is okay I guess! I am glad your brother finally went to the dr and knows more details now, should help you to have in more informed maybe. Deb

Hang in there Gail. I struggle with these "quality vs quantity" of life issues daily right now also but must trust the physician who has experienced so much more with this disease than I. Keep thinking positive and that better days are ahead, I know it is hard and at times so frustrating but it is important. I hope your discussion with the onc on Friday will maybe ease the worry a bit. My prayers are with you and Hank! Deb

Dave seems to have an increasing amount of days of "fog", which is what I call his mind being spacy! He is unable to finish thoughts often and very very forgetful as far as short-term memory. Dr told me it was a chemo side-effect but he is also on Oxycodone for the painful shoulder bone met and I wonder if that is contributing? I am tempted to ask more about the radiation for his shoulder, he needs to have more QUALITY of life. Next Wednesday is the scheduled last chemo of the Taxol/Carbo/Avastin then we have a CT Scan again and see what is going on. I am really tempted to push for the radiation no matter what, just to see if less pain meds and pain would help with these cognitive problems. Has anyone had this side-effect from chemo only? Deb

Dang it anyway...enough already! I sure hope it is a minor fix and he is not there all day waiting, as if this disease is not enough to deal with day to day! Deb

So sorry all of this is happening, I think you definitely need to take the time and talk to his doctors and understand what they are thinking and that they know how he is feeling. This food issue is a constant struggle at our house also...you just keep trying. Hugs Deb