Cathyanne

Hi all! Oh my goodness! I just realized I never came back here to update you all on my dad's progress. So sorry... I think his "chemo brain" has rubbed off on me a bit. Dad met with his radiologist in early May, and doc said that he was doing as well as can be expected, and he directed that comment to me in a very reassuring tone, which made me feel good. I know that this cancer is most likely incurable, and we're just buying him more time, but it was nice to hear, anyway. He said no more radiation in the forseeable future, and wants to see him again in August. He also had his final CT scan and checkup with his oncologist on May 20th. Doc said that everything looked about the same as the last one a couple of months before: stable, with no new lesions, and that he'd just check up on him every couple of months to see how he's doing. One slightly disturbing thing was his weight: Since treatment began in January, he's gone from 162 to 145 lbs! He said he can't imagine why he'd lost almost 10 pounds since the beginning of May because he was "eating like a horse". He felt fine, though. Doc told him to come back in July and to try to gain some weight back. Well... I just checked with him 2 days ago and he said he's back up to 157 lbs.!! He was ecstatic! His scale and the doc's scale are within 1/2 lb. of each other. Just one downside... bugger is completely bald up top now. (Sorry, I probably shouldn't laugh because I'd be devastated if it were me...) We're all so used to seeing him 90% bald anyway, but this extra 10% just looks so different. My nephew told him, "That's okay, Grandpa; I still love you, even if you're bald." (Uh, child... did you not notice the baldness before all this?) Oh, and he has bald knees, too! Little bit of hair on his chest... and I didn't ask about anything else. So, I guess he's doing as well as can be expected. I feel like now is the time for me to take a break and do something fun for me, now that I know he's stabilized. I'm taking myself to Las Vegas in September. Yes... MYSELF! I want to go where I want, when I want. I'm not a gambler, but I love music so I'm going to 4 shows: Barry Manilow, Human Nature (Australian group who sings Motown songs); The Australian Bee Gees (a tribute group), and... Donny and Marie!! I've loved them since I was 10, and still have a book about them I bought at a book fair in the 5th grade that I'm going to bring for them to autograph. Oh, I didn't mention that I'm getting the VIP ticket, which lets you sit right up front and then meet them afterward. I'm so stoked! Anyway, that's all for now. I can't believe it's been 6 months since all of this started. I thank all of you so much for sharing your experiences, and for all of your support and encouragement. Love to you all- Cathy

Hi all Well, we got the results back from dad's bloodwork and CT scan and met with the doctor last Friday. His bloodwork is almost back to pre-chemo levels. Doc said that although the tumors hadn't shrunk quite as much as he had hoped, the main tumor HAS shrunk a little bit, and there was no evidence of any new lesions, and the ones that are there have not gotten bigger. My dad said that's all he was praying for, and he was SO happy with the news. Physically, he's feeling great. He is even getting his sense of taste back. When this all started, he couldn't even smell coffee without getting sick. Now, he's drinking two cups a day and loving it. His weight and blood pressure have stabilized, and the only lingering problem he has is a nagging cough, but I guess that's the only way to get rid of all the "yucky stuff" in his chest. Now, we proceed to the next step. Dad goes in for full-dose chemo on Thursday, so I just downloaded a new book to my Kindle to occupy myself while I sit there for 5 hours (Johnny Wier, the ever-so-colorful figure skater. Should be an interesting read!) He goes back for his second dose on April 21st. A couple of weeks after that he will get another CT scan and bloodwork done. Then the doctor will just follow his progress every 3-4 months. I asked if he would get another PET scan done, and he said probably not because it would be near impossible to differentiate between cancer activity and the radiation which is still going through his body. Makes sense... Thank you all, again for your support and encouragement. Eric - there are hundreds of stories on here, so I don't expect everyone to follow every story. Just the fact that you stop by to give your support means the world to me. And you two Judy's are just precious! I always smile when I read your posts. Cathy

Annette, Diane, ts: Thank you all for your replies! I will definitely be thinking of something fun I can do for myself over the next few weeks. It's hard, though, when you're kinda broke... and don't have very many vacation days left at work. LOL! I love going to movies, but I can always talk myself out of it because they're so darn expensive - especially if you actually want to EAT anything! ts - no worries re: chemo cycles. I'm learning that there are SOOO many different types of treatment options. I'm one of those people who sometimes gets mixed up between "biennial" and "biannual", so when they tell me he's getting a cycle every 3 weeks, I have to think hard... is each one 3 weeks apart, or is the 2nd one done on the 3rd week after the first one... Maybe I have "chemo brain" by association? I do hope to meet Ned one of these days after his current treatment is done. If/when I do, I will give him a BIG hug from all of you. -Cathy

Add me to the list of well-wishers! Ned and I were going to meet for lunch yesterday, but had to take a raincheck due to those darn mets. I believe he's getting his radiation treatment at the same facility as my dad got his, and they're excellent. He's in great hands, folks! Ned - you are truly an angel, asking how my dad was and offering your help even as you're going through this. My prayers and blessings are with you. -Cathy

Ned, Diane and Bruce- Thank you all for your wonderful comments and support! Diane, I will pass on your story to my dad. It's always great to hear of someone who's gone through the same thing, and has come out fine on the other side. Dad just finished his 7 weeks of concurrent radiation/chemo treatment last week, so now he gets 4 weeks off before starting on the 2 cycles of full-dose chemo. I think he came through all this splendidly, aside from the diminished appetite, fatigue and occasional (though not severe) nausea. There was one day when his BP was ultra-low (77/56, or something), and he was very weak, so we took him in for some IV fluids (he got a second dose of fluids a few days later after chemo), and that seemed to perk him up a bit. Also, the day after the last chemo session, his Neutrophils (Absolute) value was a bit low, so he had to go in for a shot. He's lost about 8 pounds so far. Hasn't lost any hair (well, that we can tell... he's "follically challenged" to begin with). He's a bit obsessed about checking his BP since they took him off his meds, but I figure he's lost control over pretty much the rest of his physical health, we'll let him take his BP as much as he wants. LOL! Oh, and I think he does have a small case of "chemo brain" because he forgets things right away after he's told something. We just humor him... He goes back on 3/21 for a CT scan and bloodwork; will see his oncologist on 3/25 to make sure everything's okay; then he'll start his chemo the following week. He will also be getting that same shot the day after his 2 chemo sessions, to make sure that level stays normal. Ned - I printed out the information about your appetite issues for him, and he has it posted on his fridge at home. He said that was EXACTLY what was going on with him. Strange tastes and textures... all of that. Thank you so much for that. I hope you're doing well... This will be my first week without having to take him anywhere, and my first full week at work in over a month. All I really want to do is stay in bed and sleep for a day or so. -Cathy

Hi ts- Thank you so much for your reply. I'm still a little confused as to what a "cycle" of chemo is, but my dad has been undergoing one chemo session per week for the past 5 weeks (along with 5-day-a-week radiation sessions). He has 2 more chemos and 7 more radiations to go before he gets a break (between 3-4 weeks. I'm hoping for 4 weeks.) After that, he'll have two more chemo sessions, each about 2-3 weeks apart, so I'm guessing that counts as 2 cycles? His doctor told him yesterday that if his platelet count goes below 75, or if he starts feeling horribly weaker, he'll decrease his chemo dosage. (So far, though, his bloodwork is still really, really good. Platelet count has gone down, but is still in the 100's.) Doc tried to cheer him up a bit by telling him "Well, I can definitely see the light at the end of the tunnel here," but my dad who is normally cracking jokes and never being serious, barely said a word. He's been in bed most of the day today. I have a sneaking suspicion that if this first round doesn't significantly get rid of the tumor, he may stop after this. However, he may feel rejuvenated after the month's break, so we shall see. We're trying to keep snacks and juices at the ready, but since he's never been the type to "graze" throughout the day, getting into that habit is hard. My mom feels like she's nagging him when she tries to get him to drink or eat... he's crabby... etc. It's just really rough right now. I had a mini-meltdown tonight. I hold it in for so long that every week or two I just have to let it out. It didn't help that my brother gave me a new Tyler Perry DVD that involved a mother dying of cancer. I don't think he considered the subject matter... he just likes Madea! Thanks again- Cathy

Hi Everyone- Well, we've just finished the 5th week of dad's treatment, and the chemo side effects are definitely rearing their ugly head. He hasn't been able to eat or drink very much over the past couple of weeks, and has lost about 10 pounds. He's already pretty slim, so that's not good. Also, his blood pressure has been steadily dropping. Yesterday it was 76/50. His doctor told him to stop taking his BP pills to see if that would help. (It did. This morning it was back to normal.) I took him in to the infusion center this morning to get an IV with some multivitamins in it because he was so weak. We're trying to get him to understand that even though he doesn't have an appetite, he needs to force himself to at least drink something so he won't get dehydrated. I think his spirits are rather low at this point. He told me this morning,"This is hell." I try to cheer him up, telling him he only has 2 more chemo sessions and then he will get a well-deserved break. But I know all he can think about is the 2 additional chemos he will get in April... Full-strength ones... that I know will completely wipe him out. For those of you actually going through treatment: How long after you stop chemo do you start feeling human again? I need to give him some hope. We all feel so helpless, and my mom is feeling like she's not giving him the care he needs. I told her there isn't much else we can do, other than keep doing what we're doing. But I understand how she feels. Sorry this was so long. Thank you for listening. Cathy

Hi Chrissy My dad is currently undergoing both chemo AND radiation. He's about to have his 4th chemo treatment and has had about 15 radiation treatments so far. He is also experiencing throat discomfort, hoarseness, and some mild "tightening" in his chest. Like Ned said, his doctor (it was his regular oncologist) just prescribed the "magic mouthwash", which he is supposed to drink an hour before he eats, when needed. Its a special mixture they mix up at the hospital where he gets his chemo. It looks like Pepto Bismol, but doesn't taste nearly as good (I took a taste of it - yuck!), and is supposed to numb your throat a bit so it's easier to eat. You should look into it for your mom. Best wishes to you and your mom. Cathy

Thank you, KW Judy and MI Judy. I guess I'm just having a hard time adjusting to seeing my dad in the state he's in. Then I have to remember to stop being selfish and think about how HE'S trying to adjust to all of this. It truly is a roller coaster ride of emotions. As for the rest of what I'm going through, that'll just have to be dealt with as it comes. MI Judy - thank you for sharing your story, which is VERY similar to mine. I just can't fathom having to move back home yet. My nerves will be shot, and I'll need intensive counseling. I'll post back when there's something more substantial to report. Don't want to spend a lot of time here moaning about things I can't change. Thanks everyone- Cathy

Thank, Randy. My dad's lab work came back great again this week. However, he is now REALLY feeling the fatigue and "blah-ness". Today my niece took him to his radiation treatment, and he told her that today is one of those days where he's so thankful to have people driving him around. We also have a transport wheelchair in the back of his van in case/when he gets too weak to walk. He's got 4 more weeks of treatment to go....4 more chemos and 17 more radiations... and I just hope he makes it through without too much pain or discomfort. I wish I could take all of this away from him... His body is taking such a beating, and for a 77-year-old, he's taking it like a champ. I love my daddy... Cathy

Hi everyone Sorry for being MIA for a bit. Trying to adjust to my new schedule and new life, and it's taking some getting used to. Dad is going into his 3rd week of treatment. His first round of blood work after starting chemo came back great! His doc told him that his bone marrow must love the chemo because his numbers were even better than before. He's becoming a bit more fatigued, though, and Friday night was the first time the nausea really kicked in. His appetite was great up until Friday evening, and now he's not really hungry, but knows he needs to eat. I really think that there's a disconnect with my mom and this whole situation. She finally admitted that she can no longer pretend that he just has a bad cold. That said... I think that she can't bring herself to help him as much as he needs her to, because that would be acknowledging that he does have cancer. She's never been one to face problems and deal with them, (hence, the substance abuse issues i mentioned in my post above), so I'm really at a loss as to what to do. Any advice? Cathy

Hi Chrissy That's fantastic news about the PET! Your mom is also lucky that her radiation is only for 7 days. My dad's is for 7 WEEKS! He just finished his 3rd radiation session, and he's feeling fine. Well, other than some "intestinal issues" that are most likely from the chemo. He was given chemo and radiation simultaneously. His radiation sessions last, from the time he walks into the room until the time he walks out, a total of 10 minutes. He was given a ton of information at his first chemo appointment to bring home. Take care of yourself. I think that once things are underway, you will feel a lot stronger. Cathy

Hi Chrissy If you had said your dad was diagnosed, instead of your mom, I would think you were my sister. I went through the exact same feelings as you're having about a month ago when I got my dad's diagnosis. (My story is also listed in Introduce Yourself under 'Aloha...') I didn't eat for almost a week, and cried every day. My 3-week vacation was spent taking dad to his appointments and getting involved in his treatment plan. He is also not a candidate for surgery, so he started his chemo/radiation appointments today. This site is a godsend, and I've met the kindest, most wonderful people here. Take things one day at a time,a dnplease keep us posted. We are all here for you. Cathy

Hi everyone- Sorry for being MIA for a bit. Things have been a little hectic, trying to get all of these appointments and drivers scheduled. We've discovered that it would be easier to take it week-by-week. We are also having problems with my mom. We believe she may be in the beginning stages of dementia because she can't remember more than one thing at a time. She keeps saying (about dad's cancer treatments) "I have no idea what's going on..." and it only makes things worse to say, "Remember when I told you...?" because she never remembers. This is causing me a lot of anxiety with regard to dad's care at home, and how well she'll be able to care for him. There are substance abuse issues there, too, which she refuses to acknowledge or deal with. I'm feeling very overwhelmed at the moment. I guess the good news is that we finally got all chemo, radiation, bloodwork and doctor appointments coordinated and scheduled. My sis is with him at his first chemo appointment this morning. He checked in at 7:15...it is now 12:30 and he's STILL there! They said it would not be this long for future visits. They gave him a bunch of pre-chemo goodies (antinausea, Benadryl). My sis said he's not stopped talking all morning, even while under the influence of Benadryl! He said that he misses having "normal" conversations at home. I told her we just need to enjoy these times with him while we have him. Radiation appt. is in 2.5 hours. Bruce - I told dad about the side effect of Decadron being irritability, and my mom said "Oh, great!" I looked over at dad, and he was smiling... Crossing fingers and praying his side effects, if any, aren't too severe. Cathy

Good morning, Annette- Thanks so much for taking the time to read and reply to my story. I have my strong moments... and then I have my "breakdown" moments, too. Listened to some gospel music on the way in to work this morning, and just started crying out of the blue. But I'm trying very hard to stay focused on the task at hand: getting my dad to his appointments, helping him with his errands so he doesn't overextend himself, and making sure mom is taking care of him at home. I may be a bit "smothering" at the moment, but I think he understands. He told me last night that he hasn't told his brother about his diagnosis yet because "He doesn't need that right now." Apparently, my uncle is going through a lot of his own problems right now, and my dad said, "Besides that... I feel like I'm going to make it through this just fine." That's the first optimistic thing I've heard him say! And even if he doesn't really feel it, and is just trying to convince himself, that's fine with me. The more positive affirmations you make, the more you'll (hopefully) believe them. I plan to be a permanent fixture here! -Cathy