I wanted to post last night but my mom's doctor was running way behind and after we saw him we had to go to the lab and pick up some drugs at the pharmacy so by the time we got home I had to make dinner for all the dogs,make dinner for my dad, myself and yes I got my mom to eat a little pork chop and some yams . Then I had to clean it all up decided I was too tired to make the drive back home and too tired to post anything. I came home this morning and work tonight.
My mom's CT does show progression in the liver mets both in size and number but so far there is no ascites ( fluid) or liver enlargement. There is a lesion in her lower spine but she does not have pain there so we do not know what it is but she has had some shoulder pain and rib pain so will get a bone scan to see if it is cancer and if it is some radiation to help control pain. Her lung remains stable with no cancer but she does have a very small pleural effusion and a small pericardial effusion . They could be from the Taxotere as it can cause such problems. The doctor said both are small and not really an issue at this time.
My mom told the doctor NO more chemo. He was shocked by this and shocked that she has been feeling as bad as she has until we started talking more. I told him she has not been eating ( her weight went from 114 lbs to 106 in 4 weeks) . He like I think alot of how she feels is the fact she is not eating thus starving herself to death. He offered her two different appetite stimulants and she said no to both! Stubborn old girl. I told him she feels bloated and since there is no ascites he thinks it may be her digestive system has slowed down from all the chemo so we were finally able to talk her into trying a drug to speed it up thinking if she does not feel bloated she may eat better and get more energy and have some quality time left. He told her cancer or no cancer if one does not eat one has no energy! ( I did get her to eat some dinner last night after taking the pill and she ate a big bowl of cereal and a bannana for breakfast before I left for home so I am keeping my fingers crossed that this helps.)
Hospice is suppose to call her this week. I think her doctor did not want to see her giving up as he had gotten so use to her being a fighter. In an amazing gesture he did offer her one more chemo Navelbine ( she said NO) and he did offer to put her back on one of the previous chemo's and try avastin with it. He said he would not push it as he still feels the risk of a bleed is too high at her age but that he would offer it if she wanted it. Hello, if you recall I argued for avastin in the past and he refused and told me it would break his vow as a doctor to give it her if it harmed her! What a turn about but a little too late, but as I said I think he wants to see her not give up yet. She has made up her mind as she told him the quality of her life is no way to live. I personally think she was planning to just starve herself to death and pray we have changed her mind on that plan.
I am debating as to when I should put in for a family leave from work.I think I will wait and see how she is next week when I go down as I do have 11 days off work starting next Monday as for a long time I had been planning my yearly trip up north to a big halloween party a friend has but now I will spend it at my moms. I am hoping to meet the hospice team as maybe they can give me advice about when to take the leave from work.
Before I say goodbye I want to stress to those of you reading this to Please listen to your bodies.If you feel there is something wrong please get it checked out even if you have to change doctors to find one that will check it out. I feel alot of anger and what if's towards the doctors who my mom saw for the 4 years between her shortness of breath clean CT and the pleural effussion that lead to finding the cancer. If you recall over that 4 year period my mom kept going back with new complaints (which is not like her) things like sweats, fatigue and that 40 lbs weight loss! ( she only weighed 144 lbs so that was a huge loss). I feel angery that the doctor did not seem to see any of that as serious enough to find a reason. The what IF comes in as what if only a few months or maybe even weeks earlier they had ordered a CT and found the cancer and it had not spread to her liver yet? The fact that the Tarceva did away with the lung tumor and it has not come back makes me think if we had gotten to it before it spread to the liver, the Tarceva would have done what it did and since we had no liver mets she would still be stable and still be on Tarceva as we would be assuming since the lung tumor was gone and has not returned that it was still working. Instead we are calling hospice!
I know I need to drop the what if as what if's only serve to hurt us but I don't know how to drop it as it is in that constant tape in my head so if nothing else maybe it can serve to help someone else by them making sure their doctor does not just dismiss them when they feel something is wrong. If it saves even one person from going through this it will have served some purpose besides driving me crazy. Better run and I have things to do. God bless all who read this. Hugs JanMarie
Dearest JanMarie...I know exactly how you feel. I look at the VA system and think..what if they had insisted on a CT when he was short of breath that summer I was helping him clean stables and fill feed barrels...what if when they knew there was an issue, they had insisted on a PET scan right away...would we have caught it early enough to to suregery...instead now, we have hospice.
Today we went to see Dr Stephens. He is still in disbelief at the drastic downturn in Bud's health. He said...I was just up there a week ago Sat (meaning the hospital) and he was doing GREAT. Then this....." and he just shook his head. Bud is just like he was last Christmas, for any of you that remember me sharing those God awful days.....he asked me if today was indicative of how he has been since his discharge...and I had to say yes. What it boils down to is this...Bud has had 5 lines of chemo, including the original concoction with Avastin added to it. The 6th line would not work. His body is too exhausted, too depleted, too tired, too weak If he had another round, it would do him in. We all cried, doctor included, because they just love Bud there. He has been a real fighter...and exceeded all of their expectations and hopes. Two of the nurses came out and hugged Bud goodbye...and told him they would see him in Heaven. It just breaks one's heart to see this. There were people in the outside waiting room watching this display, and I could see them wiping tears from their eyes. All I could do, was pray for a second or two that they would find success and be victorious over their demon. That they would not be where we were today.
I went and shopped for his wedding anniversary present today. I was gone for all of 45 min with his daughter and her fiancee here to relieve me. He called me on my cell, all in a panic. Tonight, he told me I could not leave after 6 pm...no way no how. Then, he admitted that he was afraid that I would die in a car accident and that I would leave him to take care of his final days, or that he would die while I was gone and we would not, could not be together.....I'm crying as I write this. My poor eyes...it will take them 15 yrs to clear up the bags under them....
JanMarie....I reach out to you tonight to hold you up in prayer. To lift your spirits to a higher level, where I have been able to find the strenght to see hospice come in. They are wonderful, and even though I wish I could turn the clock back, I know that this is supposed to happen, that we are suppesed to be the ones to see these beautiful people pass over..and we are the ones to help those that come after us, to offer them strenght...So JanMarie, reach out to me in So Indiana, grab my hand sister, and let's stand together....
JanMarie, I think your mom is very brave. She has taken control of her life and says NO. No more! I would imagine that is a very difficult and scary decision to make. Your mother must have been a pretty active person and if that is the case I can understand her not wanting to hang on with very little quality of life left. God Bless her and you too. linda
Jan, I have heard nothing but good things about Hospice. I know it must feel like someone hitting you in the stomach and taking your breath away. I understand they control pain, as much as possible and make your loved one as comfortable as possible. I pray for a relief from pain for your Bud and a relief of pain for you knowing that your are losing him. Bless you and Bud.
Tomorrow we go to the VA in Houston for five appointments. That means all day. I don't know if his oncologist will allow another chemo for him as he is just out of the hospital for the dehydration. Thank you for prayers.
I was sad to hear of your mom's decision, but respect her and what she is going thru. I admire how hard she has fought and they say after a while it just tires you out...you have nothing else left in you to fight with which sounds like your mom. She has got to spend some very special moments over the last 2 years I remember you sharing with us. I know for selfish reasons we want them to keep fighting and fighting, but know it cannot be easy on them. I am actually going to ask Stan's doctor on Monday about his treatment. I worry it is doing more harm than good! He scared me this morning and slept until 9:30! He actually slept thru the kids getting ready for school! He is more quiet, more to himself.
It was a good thing to read that your mom's scans are not horrible, but given the way she feels could just be a build up of the chemo in her system...reminds me of Bud. If I remember correctly Bud's doctor is also surprised the way he is feeling, but makes me think that chemo takes a toll on their bodies. I hope your mom won't be stubborn and not eat!
Keep us updated. I pray for you and your mom...you never now she could start feeling better if she keeps up eating!
You take care JanMarie and get some rest too!
Thanks for the replies. Though I do not know for sure since I am back at my house for the rest of the week but I do think my mom must be eating a bit more and feeling a bit better as she did E-mail me yesterday and when she does not feel well like the previous two weeks she does not even look ath her e-mail so I am keeping my finger crossed that she has perked up some.
Linda, I too am certain that it must be a hard decision to make to stop chemo but I think you get to the point where it is doing more damage then good and feel you can not take it any longer and have to make a decision of quality verses quanity of life. It can only be the decision of the one with the cancer as your loved ones have selfish hearts that do not want to see you stop and it is not their body that has to deal with the side effects of chemo. I trust my moms decision thou I will be honest my selfish heart doesn't really want to see it. On the other hand I think it would be even sadder to still have the fight in you and have the doctor say there is no more. We thought we were at that point but then he throws in two more options but it was too late as my mom had made her decision and in doing so I think a huge weight was lifted off her.
Kim thanks for your message. You and Stan have been an inspiration to me and I think about you two and your boys all the time. The fact that Stan has Liver mets and brain mets and SCLC is more aggressive then NSCLC yet he keeps going on like he does gives me hope that my mom ( if she eats ) could still have some good time ahead for her to wrap up her life so when the time comes she is at total peace with it. I hope Stan too has some good days ahead to spend with you and the boys and he is always in my prayers and thoughts.
Jan what can I say? I am there holding your hand and lifting you up. I feel there are many here with us so we are not even close to being alone. Though my spirits drag at times I too know this is just life and is meant to be and we are meant to be the players in this chapter sad as it may be. We do not have to like it but we do have to accept it as a change that we have no control over as it is not our hands but rather it is gods hands that hold our futures. Crying is gods way of allowing us to wash away our pain and sorrow so go ahead and cry when you feel like it as in the long run it will make you feel better.Just Save me some of those kleenex will you?
Hey you and I are not only sisters in spirit but in name too as I have always gone by the name Jan ( Marie is just my middle name that I used to seperate myself from other Jan's that may come here) So yea you and I are sisters and we will see each other through these dark times and back into the light where we can help others that stumble down this path.We have that campfire to go too.Right now I am thinking a trip back to Bali when this is all over .Bali was such a spiritual place that it would not take me long to find my place back in life after a few weeks there. Staying once again out in the middle of the rice paddies in the cheap guesthouse I stayed in years ago, The stars reflecting off the water in the paddies at night like jewels as the frogs, Geckos and insects sing a Lullaby. The days spent lost in the spiritaul word of the balinese people and the evenings watching the balinese dances once again very spiritual in nature. Yep I may need to go there again.
I have been trying Japa meditation, thou I am not too good yet I do find a sense of peace when I do it. Well Dash needs to go to the vets to see how we are doing with his health issues, Crazy dog ate a dish towel while I was at work the other night. At least it seems he ripped it up first. He seems to forget I will know which dog did it as it all comes out in the end! HA HA!
May we all have a good day today. To all of you out there you are all a part of my prayers and will continue as such. My best to each and every one of you. Now one of you get out there and win this battle ! JanMarie
from one Jan to another...how do we find eachtoher...how to find our place where we can be ourselves, after.....after our loved one is gone. A wonderful chaplain came today...and he was so welcome we invited him back for Monday. LOL...I think he was surprised to be welcomed back so readily...but he was so nice and understood our path. Our journey. I hope anyone who comes here understands where some of us are at the end of our journeys...where we meet the fork in the road...where one goes one way, and the other another way. Sure, all of this sucks terribly and I will be the first to admit it. I look at the posting board waiting for one of my posts to be banned at any time, but God is supreme and he directs our paths. Please each of you be strong, keep the faith, and hang on. We are more than willing to help out and lift the other up in faith