jaminkw

Michele: I'm with KatieB and I'll go a step further. Not only have a plan, at least as far as your mother's belongings go, but have it go into effect the day of "the talk." I believe people behave (outrageously) the way they do because other people allow them to. Also, if this woman has an adjenda related to getting your mother's things, their monetary value, or even getting them out of your dad's life and memory, don't doubt she'll put it into action the minute your dad tells her what the meeting was about--and don't doubt that he will tell her. The lake property may require a little more time and effort but don't let what happened to other's who have shared here happen to you and your sibling(s). My heart goes out to you. The loss of your mother is enough to deal with. Judy in Key West

Fred: How could I get past this one with that title. You did it again--great joke. Judy in Key West

Snappy: Ned made an important point. Taxol is given first so when it was stopped, Joe proably got no chemo. I only got two of three, and as Ned points out they're supposed to all work together, but I have to think two was better than none! Listen to the seasoned survivors, o.k. Judy in Key West

Need more affirmation? My daughter, the nurse, who was always warning me about staying away from sources of infection apparently did't have the heart a couple of months ago to tell us not to stop and visit (I'm sure it was for my grandson) when she'd had a cold. I caught it and it complicated my recovery from that infusion pretty bad. Not only did you give yourself time to recharge your batteries, you protected your dad and others in the nursing home. And oh my, how happy your son must have been, sick or no, to get quality time with Mom! Sounds like a win win situation to me.

Snappy: I think I've got it--Joe had the reaction on February 25 and they stopped the Taxol and continued the other chemo drugs. Now they want to wait for the doctor (or perhaps the next scheduled infusion?) before they give him a substitute? It's not exactly the same, but the first time I was supposed to get Avastin I showed protein in my urine. I had to wait a few days to see a urologist who cleared me but I didn't get the Avastin until the next regularly scheduled chemo in three weeks. It bugged me too--I experienced it as a setback or at least a limitation to the benefit I might have gotten with all three chemos on the first shot. But fast forward a few infusions and they held Avastin again because they needed to test for bleeds. Now that time, they did the test and cleared me and had me come back the very next day to do the Avastin. I don't know but maybe they don't think the wait is a big deal when they are starting a treatment regime but do once it's underway. I'm just guessing. Judy In Key West

Hawkeye: I'm a relative newcomer here but have been following the updates on Mary. I am so sorry for your loss but I hear your confidence that Mary is still with you. The kind of love you describe between you is very special and I'm sure will bind you forever. I sounds like you've known a lot of people on this site for a long time. I hope they together with your family and friends will comfort you in your time of grief. Judy in Key West

Snappy: I'm up with the chickens again and went to check your post. I can hear your fear and frustration at Joe's delay in treatment. I was looking over his profile again and it sounds like there were delays getting to the treatment and now more. I don't know where you live or what your options are financially for a second opinion but I do know it's important to trust the doctor. As hard as it sounds for you to assert yourself with the doctor's office, it sounds like you're fighting against Joe's fear of you making waves. Waiting is the worst. For me it was finding a good hospital who would take me in and finally getting a diagnosis. I don't have any great ideas so early in the morning but it seems to me if I did have to wait another couple of weeks, it would help if I were finding a second opinion for Joe or otherwise finding more information about his possible/probable treatment. I'm still new to this but these people appear to have a wealth of knowledge. I'm sure they'll be kicking in soon. Hang in there. Judy in Key West

Snappy: You would do well to check on that delay. It's good to hear you say it's not acceptable. It means you and Joe are taking charge. I always remember my second chemo nurse telling me people can't just lay back and say "take care of me" (obliquely referring to the guy who got treatment next to me after he left). She offered educational info she put together herself and stressed that patients need to take charge of their cancer. I am at a top notch facility but glitches happen. It hasn't always been easy but I've never regreted taking charge and insisting things be done the way the doctor wants them done. Here's wishing you smooth sailing from here on. Keep us posted. Judy in Key West

Snappy: Take in all the information and follow your instincts in responding to your husband. I would hate for anyone to feel like less if they couldn't match the super-strong in handling this disease or the sometimes nasty treatments. They keep us alive but are not always a walk in the park for everyone. Judy in Key West

Little bit--not too hard to figure where that came from since I never grew past 4 ft 8 inches. My favorite though was when I was nineteen and working as the secretary to the base finance officer and executive finance officer at Fort Dix. They called me sunshine and even made me a coffee mug with a big sun on it at the base ceramic shop. Wish I still had that mug (I think it got broken in one of our many moves), I'd pick it up and rub it every day to try to recapture that young woman's joy and optomism!

Like everyone says--treatments are different for different folk. I almost always had some degree of naseau usually two or three days to a week as the treatments progressed. Moving about a lot seemed to increase the naseau so I learned to do things in small doses. I typically got up at 3 or 4 am and after the first few infusions found it nearly impossible to nap. That meant I was usually falling asleep on the couch (still am after infusion 6) at 6 or 7 pm. It's good not to hover but what helped me the most was evidence that my husband was observing me, usually without a word. That way, if I found myself blurting out "I really don't feel good," he would typically respond with something like "I know honey, I can see it when I look at you." Be there for your husband in an immediate way whenever you can (really seeing him and hearing what's going on with him). It won't alwyas be possible cause you're human too but being heard and understood even from time to time goes a long way. Probably the best advice in my experience as the cancer patient, when he's cranky just be very quiet and it will pass. Your intentions sound so good, I'm sure you'll do fine. Judy in Key West

Funny, funny. Wish I had not deleted the Tale of Two Brains (male vs female). Did you get it emailed? Judy in Key West

Kasey: Funny how we never know what will help another person. Your words and tone are so empathic and often just having someone hear you is what you really need. Thanks for keeping my focus on the 3 days aways and for doing the math for me! I like the 3 vs 18. I was devastated as most of us are when we get dx'd, but I really thought it was going to be like so many hardships that have been thrown my way. I thought I would fight it and win. Looks like I have to redefine "win." And the fight could be a really long time since I've told my family for years that I planned to live to be 104--my feelings were if Rose Kennedy could do it so could I! Wonder what my odds are on that now? Thanks and hope your journey comes later instead of sooner. Judy in Key West

I got up at home this morning and read all your posts again--in addition to your new one Patti. They are so comforting. The internet where we stay in Orlando is not the best so I wrote and read quickly while I was there. One thing it looks like I left out so that people could understand is the drug replacement program at MDACC. It's not portable. I already asked. That and my onc will keep me there as long as we can hack it. I would have to switch primary facilities and have them apply. It was a grueling process but well worth it when you are uninsured. I also had to stay three extra days this time to get replacement on my Neupogena. They say I probably won't have to do that on the Avastin maintenance. I've had a hard time in the past when I've had an extended time up there because you barely get home and it feels like you are leaving again. Bottom line, we'll start doing the three week routine Mar 11 varying it when we can. We should be up and back in three days and only have to see Dr Tseng every six weeks. Ok guys, I'm ready to go again. Judy in Key West

It was good to get up in the morning to all your posts. I did talk to my oncologist about getting Avastin locally and she said the facility at home would have to reapply for a new approval. I have little confidence in our "third world" medicine in Key West. Our oncology center is a small clinic with different doctors coming in and out from Miami. The chance that I could wind up in the hospital there through some complication was the chincher for my PCP going in favor of MDACC. I think for right now I need to keep trying to wrap my head around staying with MDACC and being open to change if necessary in the future. My husband keeps saying day by day. He's right. Thanks all, Judy in Key West

I've been struggling since yesterday after my oncologist told me Avastin maintenance would continue every three weeks until the disease progressed or until the person got tired of it. I feel like I'm sinking fast over the realization that if I want to continue to live, my life will be defined by my cancer and cancer treatments every three weeks--possibly forever. For the first time I wonder how long do I want to live at that cost. It's not just me but my husband. He's the one who hauls me up and down a seven to eight hour trip to Orlando for treatments. Will I ever be able to do that myself and give him back some of his life? Even when I found out I had cancer, and then not cureable but manageable, I didn't expect the final edict to be like this. Judy in Key West

Thanks for the feedback. If my brain is working on this pukey Friday following my Tue chemo cocktail, it seems the time on Avastin according to your posts could range from 7 to 18 months before the disease progresses. The bad news, I guess, is that the expectation is that it will ultimately progress. That confirms what I heard my oncologist say. I am happy to hear all the good words about reduced side effects but am still nervous about the horrible headaches and sore throats I've already had. The doc gave me nystatin for the sore throat and said my PCP has to get my blood pressure under control. The headaches seem to have multiple causes possible including flare-up of an old occipital neuralgia, high blood pressure, chronic long-term allergies and sinusitis, and possibly Avastin. I guess I'm at the "not cureable but manageable" phase but it's hard to be optomistic about continuing three-week infusions until they fail and yet another treatment regime gets under way! Fighting to stay "UP," Judy in Key West

Pat: I can understand your distress. It doesn't sound right that an oncologist would be so inconsistent unless he's trying to tell the patient whatever he wants to hear. The real problem sounds like he has your father fished in and that could be difficult to reverse. Perhaps some of the more seasons people on the site will come in and offer more than emphathy. But I do feel for you and your family. Judy in Key West

I just got my last chemo cocktail on Tuesday and tackled the queston of the Avastin Maintenane (finally) with my oncologist. I've only managed to take all this in a little at a time. When I asked how long I would be on it, she looked me right in the eye and said until the disease comes back or the person gets tired of it. I asked if there would be a lengthening of time in between infusions scheduled for every three weeks and she said no--the trials or whatever of Avastin maintenance is to continue on 21-day cycles. I'm already doing that "there's no way I can travel to Orlando every three weeks for chemo for the rest of my life. I'm on a prescription replacement plan and it's only good at MDACC. If I went closer to home, they would have to reapply, and I really don't want to leave MDACC anyway. I would appreciate feedback from anyone who has been on Avastin maintenance and for how long, and if stopped, for what reasons.

Left Key West early for this infusion on today. I needed a grandson in Port St Lucie fix. He takes time out from his friends and activities and just hangs with us in the motor coach. He doesn't ask anything of me but is just happy if I'm there on the sofa next to him appreciating what he's writing or drawing on my computer. What a joy. Internet while we are traveling stinks so I'm taking advantage of a 5 am window of opportunity here. I want to say that we paid out way too much before we hooked into helplines at MDACC and ORH--particularly on the medications but no sense in crying over spilt milk. It would have been worse,if we didn't have advocates in the system and my husband holding me back and telling me we were going to be broke pretty quick if we kept paying out at the rate I wanted to. It's that old childhood "I can do it myself" thing I fight all the time. We were buying Neupogena at the hospital pharmacy at a rate much cheaper than we could get at home but think we missed a replacement or two because we had bought in quantity and it needed to be scheduled at the hospital not purchased at the pharmacy. We are doing it right this time but it may be the last time we need it. Ned, did you do Neulasta after the Avastin only? We haven't gotten the answer to that yet. Last infusion we also had labs scheduled outside the infusion room and didn't understand why. I think that was an adjustment necessary for the replacement as well. They scheduled them that way again this time. You really need to stay alert and ask questions or bring someone who can. Also, getting the Neupogena in house for replacement also means staying in Orlando three extra days but you do what you have to do. My quality of life stunk this time but I'm ready to go in this morning and tell the doc I can take it one more time. I just want this last chemo cocktail over with. I just am afraid the headaches will continue with the Avastin only next time but I have to wait and see. Judy in Key West

Ned and blueeye: Thanks for bringing up the subject of pharmaceutical company drug replacement programs. I've been wanting to post on the subject but thought who am I to advise anyone about cancer and finances when I got caught uninsured. If you are ininsured or find yourself feeling snowed under financially, don't hesitate to talk to someone in finance about these and other programs. And no, the requirements are no way as strict as Medicare. I hate to hear people going into their retirement funds they've worked so hard to try to create as a supplement to Social Security without checking what is available. I almost blew it myself with my stubborn self-reliant "I can pay my way myself or I won't do it (the treatment)" attitude. And don't assume you are middle class so make too much money to qualify. The facility I am in looks at how much you've already paid out of pocket, how much if at all your income has been reduced by the cancer, and whether or not the bills accumulated are already beyond what you or you and your spouse could possibly handle. There is also full help and partial help. My advice to anyone out there struggling financially, swallow your pride and see what help is available. We are sure glad we did. Judy in Key West

Love it Fred but I'm so chemo-brained that I to stop and think a minute before I got it! Dummy me. Judy in Key West

MM: I can't even imagine the emotional pain you are in. You said you lost your sister 3 weeks ago? That's no even enough time to begin grieving before having to face this issue with your husband. I'm throwing in with those who say he needs to make his own decision, and following his intuition knowing all the facts appears to tip the scales for him against the surgery. What is important for you to know is that the situation you are in--between a rock and a hard place--is considered one of the primary stressor situations. Just remember, it's o.k. to feel like you are damned if you do and damned if you don't. Your belief system here--believing that accepting surgery would be his best choice and it's your duty to convice him of what's "best" for him vs believing you will put a wall between you (like you feel you did your sister)if you push for him to have the surgery. You can work your way out of this double bind by changing one of those beliefs or choosing one over the other. Follow your instincts or perhaps keep following your instincts because you sound like you already know what you have to do but it is so hard! Judy in Key West

Ned: I do like the idea of the dates in different colors. Do I use tags before and after each date or set of dates? Also, looking again at your profile, I remember how helpful the section on side effects you experienced was. I haven't done that yet but since I've already edited two or three times today, changes will have to wait for another day! No, I have not seen Dr West's post on PET scans but will go looking for it. You weren't kidding about the 5th (hopefully you're wrong about my 6th!) infusion being rougher. I feel cheated because the 1st and 2nd were relatively benign. The third was the awful 1 1/2 hr infusion that kicked my butt. The 4th was disrupted for an evening CT WET to check for bleeds. I had to return at 7:30 am for the Avastin which was run in a half hr instead of an hour. After that one headaches were not as intense but I got an awful coughing, sniffing, sneezing cold and battled high blood pressure. This time I wake every morning with a throat that feels like someone ran across it with a sharp knife, awful headache and mild earache. The only time I get relief is about 5 1/2 hrs of 8 hr Tylenol. Blood pressure issue still not resolved with a beta blocker added. One more cocktail and hopefully I get a reprieve with Avastin alone. I am glad I was strong when I started this cause I feel like a real whimp now. You seasoned fighters help so much. When things are really bad, I sometimes remind myself I don't have blisters on my feet so when I do get some relief from pain, I can get up and do something! Sorry for the big dump. It just all came rushing out. Judy in Key West

Peachy, It's on Orange Avenue in downtown Orlando in what appears to be the section where all the hospitals and other medical facilities are. We stay at a KOA near Narcossee and it's about a 30 minute drive north and then west, I think. It operates in conjunction with Orlando Regional Healthcare, and MDACC and ORH are actually physically connected. If you have any other questions, just ask. I think it's a great facility and wendyr's husband also goes there. They travel from Melbourne. Judy in Key West