| Author | Message | ||
     Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1541 Registered: 9-2003  |
It's gonna get way worse before it maybe gets better (though at the moment I feel better). My husband's headed for 6 months to a year of kick asc chemotherapy. Next week he'll get a timed-release pump put in him. Every Monday (or whatever the start date is) he'll go to Overlook and get a big shot of stuff and the pump will get loaded with Oxaliplatin plus Flurosil. It will run for 48 hours. Goes back and they remove. Assuming (hoping) he has no allergic reaction, this stuff will ream the living daylights out of him. It will be hell in all respects, but it has a prayer of choking the little cancer buggers given his kind and location. With trepidation, I call this good news. His oncologist, who had seemed a bit cynical and almost lackadaisical, seems inflamed with hope. So, I brace myself for a long haul. This war will not be over by Christmas. It will require me to find exciting pasted together ways of keeping his schedule, his needs, our kid's, my job's and alla that. But, it beats dying. | ||
| greenetree Supporter Username: Greenetree Post Number: 4720 Registered: 5-2001  |
Cyn- I am so sorry for this new and unwelcome twist. Sometimes I think that not knowing what to expect from day to day is the worst part. I guess that if there's any good news, it's that he can do his chemo at home. I like the idea of putting Cynical Hubby & Greenemom in a room together. I envision him saying to her "Look, you thankless bitch - you have everything going for you. Your cancer is shrinking, your infection is almost gone and your esopheagus is healing. Get the flock out of that bed & stop feeling sorry for yourself". I'm all twisted up at this point. One minute despondent & depressed, the next minute frustrated & then elated. She just isn't working with us on this. Next week was to be her final chemo, but she's too weak. I had it all figured out, including a small but very special celebration of her 65th B-day at the end of July. Part of it is the pain medication. She keeps telling the docs that she is in pain so of course they keep giving her morphine. Her friends & family aren't so sure. I am convinced that some of the pain is actually fear; fear of beating it, fear of what comes next. She has been having major GI issues due to the morphine. So, tonight we are having a rather unpleasant procedure to help that out. They are also reducing her meds. She still isn't really eating. She's also going thru morphine withdrawal on top of everything else. Mom got out of bed & walked down the hallway today for the first time since she's been hospitalized a week and a half ago. This means that we will have to find a skilled nursing facility because she won't be able to go straight home. Oh, did I mention that as of tomorrow she is eligible for Medicare, so I have to scramble to figure out her new benefit structure? Thank god for Normal Bro. He basically chewed her out this morning & told her that she has to choose if she wants to live or die. She cried, but then got up & started straightening up her hospital room a bit. That's huge. So, here I sit. Playing it moment by moment. The worst thing is that I don't get a Xanax today. I am on a self-imposed rationing program. I wouldn't be well cast in a remake of Valley of the Dolls. | ||
| greenetree Supporter Username: Greenetree Post Number: 4722 Registered: 5-2001 |
I just read the post about the child who died, David Coble. The pain his family must have is unfathomable to me. It literally makes my brain hurt. I cannot imagine how his parents will begin to get over this. | ||
| bets Supporter Username: Bets Post Number: 1975 Registered: 6-2001  |
Oh no!  I had a totally different ending for that one in my heart. And I have a feeling that child affected a lot of hearts around here (including mine) and will not ever be forgotten. | ||
| greenetree Supporter Username: Greenetree Post Number: 4723 Registered: 5-2001 |
Yeah - if I weren't an atheist, I'd be ducking lightening bolts for this one, but here goes.... My mom's best friend and I were talking about how frustrating it is that mom is halfway in the fight right now. All the physical tests are coming back in her favor. Yet, BF's sister, who wanted so badly to live, couldn't beat her cancer because it metastasized to her brain. And this young child, with his whole life ahead of him.... Dammit, mother. Why can't you try? You owe it to those who can't or couldn't. OTOH, I have no idea what you are going thru, so where do I get off, right? | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1542 Registered: 9-2003 |
There's no sayin' why some make it and some don't. I haven't a clue whether my husband will or won't; I know he sees the spectre of his dead brother (died of this at about this age, 13 years ago) and his mother (died in her 60's, similar). I do know that our 11-1/2 year old daughter is his powerful motivation, and the thought of leaving her makes him crazy. Yes, David Coble's tribulations and death are terribly hard to bear/witness. At the moment, the world feels colored with a cancer crayon and it's hideous. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1543 Registered: 9-2003 |
Here's today's challenge: put on your thinking caps, if you would. Allowing for the fact that I really have no idea how things are going to go, I need to plan for the "best" case scenario. The best case scenario has me going to work more or less normally. I need to as we have no other money. Next Thursday I meet with my boss to find out what flexibility if any they can give me. Now, I think I can pretty much plan and pay for camps and similar for our daughter this summer. Here's where I'm looking for advice: 1. What do any of you know about services that take people to oncology-like appointments at the hospital, and then bring them home? Likely prices? I am concerned about my husband being by himself all day. At the very least, he will be lonely/bored etc. This is not good for his head. I am looking for ideas on how to get him visited (not nursed). Do you know whether: 1. The VFW (he's a Viet Nam vet) might have something where vets could drop by to chat a couple of times a week. 2. Husband is Methodist by upbringing, though not involved of late. Do you think there's anything there? 3. Any other ideas? I've called in to some oncology care related site about what services may be available, but the social thing kind of stymies me. We don't know tons of people around here, and many of us work. Right now, husband's a bit weak and blue, but I know he's concerned about being stuck in the house all day. | ||
| Nonymous Reingold Supporter Username: Noglider Post Number: 8055 Registered: 1-2003  |
Cynicalgirl, I don't know about services that take people to hospitals. I also wonder if they exist. In general, I think the fact that travel by means other than car is so hard is one of the big disadvantages to living in the suburbs. I feel this way because I lived in cities for my first 26 years. For rides and social contact, I suggest that part of the solution be people right here on MOL and elsewhere in the community. For instance, we might be able to commit to a certain amount of time per week. And if we and others can't commit to daytimes, we could have dinner. And while that doesn't involve much time, it could be something to look forward to and also something to remember after it happens. And that can keep the spirits up. Methodist by upbringing implies (to me) that he is agnostic or something close. Church -- the right church -- can embrace someone whose beliefs don't lie in the middle. The sense of community can be a nice thing, if you can find a way to slip in, accept the others around you, and have them accept you. I don't know much about Methodists, except that they seem to have moved over the last 100 or 200 years from staunch and judgemental to open-minded and liberal. That's my observation from a small sample of friends. Ohter alternatives are Ethical Culture, which is atheist (or close to it) and Unitarian, which allows for just about all beliefs under one roof, yet with a strong sense of ethics. If you haven't been to a Unitarian service yet, go! | ||
| CLK Supporter Username: Clkelley Post Number: 1218 Registered: 6-2002  |
My mom is Methodist but my dad wasn't until a few years ago. He was unemployed then (now he's calling it "retired" ) and my mom's pastor called him EVERy single day to check up on him and just shoot the breeze. No proselytizing, just checking up. Well needless to say my dad is now one of the active people in their local congregation, sings in the choir, etc. Based on his experience I'd be optimistic that the Methodists would be helpful - but I guess it really depends on the local pastor, what kind of person is he or she. Doesn't hurt to try. They now have a new pastor and she's at least as wonderful as they guy they had before, so my impression of Methodist ministers is very positive. I agree with Tom. I could probably take some time off to take to a chemo appt. - not a lot, but combined with others here might be enough to get you over the hump. I barely know your husband - met him once - so I guess that's his call if he'd feel comfortable with that. Many of us owe you a lot, cynicalgirl, and it would be good if we could pull for you physically as well as emotionally. I'm putting this out there publicly in the hopes that others will step up to the plate, too. | ||
| marian Citizen Username: Marian Post Number: 703 Registered: 9-2001 |
Cynicalgirl, I don't think I know you but I FEEL I know you from MOL ;-) My husband and I both work full time in the city and we have a 2-yr-old, so time is difficult for us to donate right now... However, we really want to help you and your family get through this. Here's an idea for getting hubby to the chemo appts: Could we arrange for a local car service to drive him and then pick him up on the days that you can't or other volunteers can't make it? We'd be happy to "sponsor" some of his car service trips (i.e. pay in full) a few times. If this is feasible, I'm hoping some other MOL'ers who are pressed for time as well -- but really want to help --- will also sponsor some of his trips. Hang in there, Cynicalgirl--we are all pulling for you. Let us know if there's ANYTHING, ANYTHING else we can do to help. -Marian | ||
| las Citizen Username: Las Post Number: 216 Registered: 10-2003 |
Count me in - I will take a day off for chemo and company. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1544 Registered: 9-2003 |
http://www.cswayne.com/waterloo/canal3.html This is a link to pictures of us just last summer on a trip to Waterloo Village. It makes me cry. I gotta stop, though, as it freaks my kid out. You guys are the best. Running my kid to the pool. I think I'm going to "come out" soon -- not that I've been all that undercover. There's really nothing travelling under my own name can do to me that this cancer isn't doing worse. | ||
| redY67 Citizen Username: Redy67 Post Number: 2515 Registered: 2-2003  |
cyn what great pictures! You have a beautiful family... | ||
| las Citizen Username: Las Post Number: 217 Registered: 10-2003 |
Beautiful. A memorable day I am sure. | ||
| marian Citizen Username: Marian Post Number: 704 Registered: 9-2001 |
Cynicalgirl--cry if you need to--it's a great release. Just try not to do it so much in front of your kid. (Maybe duck into the bathroom and turn on the water if you feel a jag coming on?) These pictures are gorgeous! Thanks for sharing them with us. Hope you guys had a great time at the pool. p.s. Funny, I always imagined you looking more like Gilda Radner ;-) | ||
| shh Citizen Username: Shh Post Number: 2707 Registered: 5-2001 |
Cyn, is that your husband? DIdn't he post your entire patio project? I remember that and his artwork being very inspiring. My kids are in camp over the next few weeks, so perhaps there might be a day that after drop-off I can pick him up and drop him off at Overlook or Barnabus. Please let me know. | ||
| shh Citizen Username: Shh Post Number: 2708 Registered: 5-2001 |
Here's another thought Cynicalgirl. I know money has been a concern. Does your husband sell his work? Didn't I see a piece of his at Arts'? Maybe we can do an art auction of his work, if he's willing, to raise funds. | ||
| las Citizen Username: Las Post Number: 218 Registered: 10-2003 |
More for the stress factor than anything else, we should get a dinner schedule going so Cynicalgirl doesn't have to deal with it during this next round of treatment. Even if Cynicalboy isn't up to eating everyday, there should be a healthy meal and fresh produce daily so Cyn doesn't have to stop at the market on the way home. | ||
| greenetree Supporter Username: Greenetree Post Number: 4725 Registered: 5-2001 |
Well, I wish I could offer something, but I'm stretched a bit thin right now. I can certainly do groceries/meals on occassion. From my perspective, Cyn could probably use a Stage Manager. Someone to coordinate Cynboy's schedule & keep track of volunteers for visiting, driving, donations, meals, etc. That is what I find the worst. Also, the greatest headache is finding rides. I would take a day off if I could, but I'm out of time at work. Also, how about sending Cyngirl & Cyn daughter out for dinner & a movie one night while someone keeps Cynboy company? There are ambulette services out there for appointments, but they aren't usually covered & usually for people who need to go on a stretcher. Try PLing Just the Aunt. She knows a guy who drives on the side. Don't know his schedule, but he's cheaper than car service. BTW- just talked with mom's oncologist. He's on my side about getting her home and not into a SNF. I personally think that she is being bounced. I have to balance not letting that happen & not letting her stew. | ||
| bets Supporter Username: Bets Post Number: 1979 Registered: 6-2001 |
Count me in for any donations I can provide - I don't have days off. Seriously, anything I can do. I remember the patio project too and spending a few hours looking at the progress. This makes it that much more personal. Hang in there, cynicalgirl. | ||
| shh Citizen Username: Shh Post Number: 2710 Registered: 5-2001 |
Cyn, Greenie, how about we separate these threads. Cyn, I think you need your own space! | ||
| greenetree Supporter Username: Greenetree Post Number: 4726 Registered: 5-2001 |
If it doesn't bother Cyn, it doesn't bother me that we are sharing. Sometimes, this has been a good place for others who needed to briefly vent about other family illnesses. Sometimes it's a lot of effort to run a blog. OTOH, if we are going to do a schedule to help her out, it should be in a separate place. Maybe a SIG section? Your call, Cyn. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1546 Registered: 9-2003 |
This is a quickie...couple thoughts, working backwards: greenetree, I appreciate your allowing me to post my crap in here. It has felt less lonely somehow being in the middle of yours than having my own. I'm thinking about it...I do think it could be fun in a sick way if your ma and my husband were holed up in some heartbreak hotel set up. We could all take turns! bets and shh: Yep, Curt is patio man!http://www.cswayne.com/patio/ And here's his mess-pie, totally organic Viet Nam site: http://www.cswayne.com/aaphubai.html He also maintains a Yahoo community just for veterans of the 8th RRFS, but that's some kinda invitation dealy. Those guys are great, but they none of them are nearby. greenetree is right: In an ideal world I'd have an "Alice" (like the Brady Bunch) or a mother or mother-in-law to help stage manage. When I get a better sense of what the schedule will be, I will ask for any help, drivers, whatever. Right now, we're in this little holding pattern. And, frankly, this afternoon I was so blue and he was sleeping so much part of me felt like he might die before we got to it. I am normally a pretty organized person, and have handled/can handle many things, personal/medical/awful. Just never felt so strongly his possible, impending death and it got to me. So, to all you good people: As he is now awake, and he and my kid are watching a movie, I think I'll go join them. | ||
| greenetree Supporter Username: Greenetree Post Number: 4731 Registered: 5-2001 |
Cyn- I hope it was a good movie. I just did the same thing. Popped a xanax & curled up on the couch. FWIW, earlier this week, I was pretty sure that mom wouldn't make her 65th B-day in a few weeks. Her infection was that bad. But, today, she's whining & her voice sounds really, really strong. Her oncologist said, for the first time, that he really thinks that she can make a full recovery. Also, I have a good friend who'd called the priest for last rites 8 years ago - her mom had SCLC, too. She's fully recovered and stronger than an ox. As strong as an 80 y/o ox can be, anyway. I hang on to that story when things seem the darkest. You are right that it is less lonely this way. When people share, it makes me feel less crazy. SOL - how's your brother in law doing? | ||
| las Citizen Username: Las Post Number: 219 Registered: 10-2003 |
Greenetree, Hope you get to take a break from your roller coaster ride and enjoy the festivities this weekend. | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2318 Registered: 9-2003 |
Cyn - when my father-in-law was making trips to St. Barnabas for dialysis there was a van that picked him up and brought him home. The down side was that it picked up other people too, so he didn't get a direct to and fro. I do the 9-5 so I can't help with driving, but las can put me in the meal schedule. Greenetree - while my butt was in it's seat 9-5 all this week, I had a hard time keeping focused - I really don't know how you do it. Brother-in-law's week was unbelieveable. He had to go for another MRI and stress test to prepare for the surgery that was scheduled for the 5th. The Dr. called him into his office on Wed. Seems the tumor is positioned too near, or actually on, an artery so they cancelled the surgery and sent him for a biopsy to see exactly what type of cancer they're dealing with and maybe they'll try to shrink it. Yesterday, we learned that the biopsy was negative.... huh? Negative? So, according to the other tests, B-I-L still has cancer somewhere - but not there. Weird goings on - but hopeful that it's no longer the pancreas he's dealing with. Hope you can take a mental break and enjoy Mem's party tonight & any other weekend activities you and TS have planned. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1547 Registered: 9-2003 |
Well, here we are. In the last 48 hours I've spent a little time, and even posted, in the "caregivers forum" on cancercare online. I was pretty desperate feeling. The trouble is, this blog here is better for my head. I go to those online cancer places when I need info, but the fact is (and I say this as a person who works in the Internet industry so to speak) so much of it is the same damned shyt, over and over again. I know how they get their little delegated third party content cuz I've done those kinds of contracts. It really is an online version of that Springsteen or whomever song about 57 channels and nothing's on. The other thing that doesn't work for me is the endless depressingness of it all, and a kind of religiosity that I just can't do. I have always been, and certainly am now, pretty open to God matters. But, for me, too much the Lord will provide talk. I promise you, all of this is knocking me worse than anything ever has, worse than my father's illnesses and death, worse than my mother's (which wasn't that tough because it was her life that about did me in). But my primary concern isn't living through it (most moments). I'm too well trained in living through hard stuff, be it the chemo or (which seems inevitable) his death sooner than I or my daughter want. What's hard is living in this alternate universe. Kid and I went to the pool to do with las, and the closest thing I can liken this to is the emotional devasatation you feel when you heart is broken, new break up feeling. And yet, that's wrong because my husband is alive. You do all this awful (leastwise I am) pre-grieving. And then, BAMMO! you go downstairs and there he is, alive. But for how long, for how long, for how long, for how long... So. Until we start seeing doctors's towards these next steps, I am a mess. And, sadly, I find myself wondering what the PET scan will reveal. What if they decide he's too weak for any chemo. I dunno. It all is awful. I did go see Art & Art, who are friends of my husband. What dear men they are. Has nothing to do with politics. These guys are going to start stopping by during the day when I'm at work, just to say "hey." Which is a big worry of mine, him by himself here. And, for all your joiners out there (and this is the cynicalgirl in me) I did e-mail several named contacts at a local church. Why e-mail? Well, cuz when you call their number no one answers and there is no message. What a dumb thing. I have to admit it kind of put me off... So, yeah, I'm reaching out to touch someone, etc. But now I'm going to find a movie to take my kid to... | ||
| las Citizen Username: Las Post Number: 220 Registered: 10-2003 |
Wow, Cynicalgirl - you are vascilating amongst so many worlds it's amazing you find the strength to get out of bed each day. You're right to reach out; people will reach back. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1548 Registered: 9-2003 |
To Do list moving right along. Been reading American Cancer Society website, which has actual practical stuff. Got my kid's to/fro transportation worked out for week. Made phone list chart. Going to do some laundry. Feeling some better. Made husband daily medicine etc. chart with check off boxes. Paid bills. Have to go to work tomorrow, with some trepidation. Don't know how focussed I'll be, but need to get some focus. Dreading Thursday a.m. chat with my boss, re: flexibility they can give me. Inevitably -- and I do understand it -- when an employee had "needs" a certain distance kicks in and people run the tape. Now, especially as I manage a department and people, I understand why we need to get up a plan. Trouble is, at the immediate moment, it's hard to have one. I'll need to go in as organized as possible. I do not want 12 weeks of family leave. Number 1, it's unpaid. Number 2, I don't think that's what I need right now. What I need, assuming the treatment described is what we can do (pending PET scan and other) is the ability to take him to/from ("worst case") treatment so I can help ask questions, report at least for a time until it settles in. But, whatever I need, when I speak with my boss I need to seem in control and not a puddle of tears and vagueness. Unless of course someone knows of a lottery I can instantly win. I know, I know. Not bloody likely. Also had a minor personal revelation about my tentativeness to asking for help. This is personal, but here goes: I grew up the daughter of a very abusive schizophrenic. We lived in NJ in the '60's at the time. Without going into vast detail, my experience as a kid of asking for help was (for the most part) a failure. At the time, kids with troubled family situations -- especially if they were middle class -- were not much listened to. People/schools feared "interfering" in private family matters. Relatives kind of didn't want to know, really, and found it all rather unbelievable. Got a fair amount of "the Lord will provide" and pooh-poohing. So, I learned to row my own boat. And, coming full circle to the posts that started greenetree's blog: too often people mean well, but one way or another tend to marginalize you in their responses to your problem. You feel suddenly a resident of a Lifetime Channel movie. It's YUCKY! I have never identified with my "troubled" family life in the past, or milked it much. Hate support groups as a rule. I think that's partly why i was so po'ed when I called that local church and there was no message or anything. It really stinks when people/organizations put out a sort of welcome mat and then don't walk the walk. It's better not to do it at all. | ||
| Nonymous Reingold Supporter Username: Noglider Post Number: 8087 Registered: 1-2003 |
Cynicalgirl, when asking your boss for whatever you want, remember your record. If I remember right, you have been with your company for many years. You have proven your loyalty. Further proof is your willingness to take their relocation, which you're not even that happy about. So you've proven that you'll take it on the chin for your company and that you will again. Your company could -- if it thinks at all in long term -- give a little in return. And I think what you need more than anything is the ability to show up and leave when you need to and the trust that you'll get your work done, despite the hours you keep. And you also need a little slack to fall behind from time to time, because, in the long run, you have gone above and beyond the call of duty for your company, and you are extremely likely to do it many times again, some time in the future. You do that not only in the extra work you provide the company, you do it also in the higher quality than they could possibly demand. Remember this when you go into your meeting. Your boss may not know you for long, so let him know that you really believe all of this and can back it up with stories and testimonies. | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2319 Registered: 9-2003 |
Cynical - if Morrow was the church you called, please call again.. they are undergoing construction for installation of an elevator, had to move their offices and, I believe, the phone system may have been down. If Morrow wasn't the church you called, give them a try - they have a great outreach program and may even be able to fill in with drivers. | ||
| Just The Aunt Supporter Username: Auntof13 Post Number: 1606 Registered: 1-2004  |
Cyn- I can't figure out if this is Greenies thread or yours, but - have you tried the Red Cross for rides for your husband? If you explain your situaiton to some of the area camps I am pretty sure one of them will at least give you a partial campership for your daughter. Are you in South Orange or Maplewood? If you're in South Orange I'd be more then happy to take your daughter to the pool when I bring my friend's 9 year old. I'm sure your daughter will have plenty of friends there to play with at the pool. Depending on the time he goes, I wouldn't mind driving you husband to the doctor. Last, you need to remember to take care of YOU! You don't want to feel overwhelmed or burn out. Maybe you can join a caregiver's group. The members would be a great source of information and might be able to point you in the direction of available resources we're unaware of. | ||
| Bob K Supporter Username: Bobk Post Number: 8946 Registered: 5-2001 |
Greentree and Cynicalgirl. "It is always darkest before the dawn" is an old saying that, in my experience anyway, is often true. I think that is where both of you are residing right now. While I don't know either Curt of Greentree's Mom anyone who has the grit and determination to build a patio by themselves, in Curt's case, or is as feisty as Greentree's Mom is have a lot going for them and hidden reserves of strength that will get them through the dark hours before dawn. Hang tough and keep a good attitude, not only for yourselves, but for your loved ones. | ||
| greenetree Supporter Username: Greenetree Post Number: 4736 Registered: 5-2001 |
JTA - this is everyone's thread, kind of like "Gilda's Room". More later.... I have promised TS that today would be about us. We're going to lunch. | ||
| Debby Citizen Username: Debby Post Number: 1882 Registered: 5-2001 |
Hi greenetree and cynicalgirl and everyone else - I have been away a while - mostly for good reasons:traveling for a family wedding, then going to camp with the family. But suddenly I find myself needing to join this blog: my father is having the Whipple procedure on Tuesday morning, and it is assumed that he has pancreatic cancer. It really sucks. The 'good news' is that it was discovered relatively early, by fluke: he had a UTI and a regular blood test gave back crazy liver panel results. One thing led to another, and they discovered a pancreatic mass obstructing the liver - no pain, no symptoms - just funky liver panel numbers. Anyway, I just caught up on about three or four weeks worth of blog, and am very sorry to hear about cynicalboy's newest cancer twist, and achingly sad to hear about David Coble's death. It is heartwarming to see the outpouring of support and practical help offered here. Hats off to Tom and las and shh jta and all who are getting carpooling and dinner sign-ups going. Maplewood/South Orange is really a remarkable community. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1549 Registered: 9-2003 |
Just tell him that this is what most folks think Steve Jobs had. A rare pancreatic cancer, and a Whipple. A whipple is what my husband had. It's a very rigourous, long surgery (like 8 hours). It'll wear the heck out of him, but it's the hot set up in dealing with this... | ||
| algebra2 Supporter Username: Algebra2 Post Number: 3663 Registered: 5-2001  |
Debby -- even Strawberry has been missing you! Good to see you back. I'll think good thoughts for your dad!! | ||
| Debby Citizen Username: Debby Post Number: 1883 Registered: 5-2001 |
Thanks Alg. A boy at camp has a strawberry kippah (yarmulke/beanie) and it always makes me think of the 'Great and mighty Straw' with a smile. cynical - unfortunately, Dad also has Alzheimer's and wouldn't have a clue who Steve Jobs is. I will mention it to Mom, though. How bad was the Whipple recovery? They said two days surgical ICU, and then 2 weeks on a regular surgical floor - but it could be up to 6 or 7 weeks in the hospital, depending on how his systems restore. He is also likely to be left diabetic because of how much pancreas they are removing. When I hear "whipple" I think "please don't squeeze the charmin" and soft things. Not something that's going to devastate him from the inside out. | ||
| Joan Supporter Username: Joancrystal Post Number: 5879 Registered: 5-2001 |
Cynicalgirl: I spoke with my husband about Curt's situation. He is pretty certain that Curt could qualify for 100 percent disability from the military since Agent Orange was being used at the time Curt was in the Nam and Agent Orange has been linked to the kind of cancer Curt has. Is it okay if Bernie tries to pursue this on Curt's behalf? If Curt can qualify for 100 percent veteran's disability, this could mean some money coming in as well as VA benefits. Let me know. Have you spoken with Drewsilla Thorne at Town Hall? She may be able to connect you with services the rest of us are unaware of. Debby: Glad you are back on MOL but I wish your returning post could have been under better circumstances. Hope everything goes well with the Whipple procedure. | ||
| greenetree Supporter Username: Greenetree Post Number: 4756 Registered: 5-2001 |
So much going on. Cyn - I hope Joan's idea works out. Debby, I'm so sorry you are joining The Cancer Club. It's not even like we have cheap dues. Alg, when you post things like that, you ruin Straw's image as a cretinous ogre (I am also influenced by TS's insistence that he is a really nice guy). This has been a very, very long 8 days. After I posted how well mom was doing, she crashed again. This time, we started making plans to find homes for the animals and I started to prepare myself for her death. She stopped eating again and refused to answer when asked if she intended to spend the rest of her life in the hospital. Then, they did another endoscopy and found out that her esophagus was severly strictured. So they stretched it out. The plan is to do it once a week for the next three weeks. Mom was strong again by Wed and they moved her to a step-down unit that night. She's doing rehab and finally let them shave her head; no more chem-over. She even called Medicare for me to tell her case worker that I could speak on her behalf. On Thursday, she told me she couldn't sleep all night because she was worried about the medical bills. I told her not to worry, that I had it all under control. I did not tell her that, after major wrangling, Aetna had approved a big 5 days. Fortunately, I confirmed yesterday that, as of July 1, she is covered by Medicare and the SNF she is in is 100% covered for 20 days. She is scheduled to make bail on July 20 (that's the target date) and I had planned on going on July 21 for her birthday. I know she is feeling better because she & TS spend 10 minutes on the phone today talking about recipes from the Food Channel. She is doing physical therapy to regain her strength. They are starting her slowly - taking showers, walking the halls, going to the dining room to eat and reading out loud because the strictures have affected her vocal cords. I sent her a care package today. Contents: Crappy Grammar Handbook and Filthy Adult Jokes to read aloud and make her reading therapy less boring; bags of candy to bribe the staff to be nice to her; vaccum packed soy milk (the kind she likes); L'Occitane facial serum; scalp serum; scented antibiotic hand lotion; lip balm; a copy of the Star (I didn't get to read the article but did you know the JFK, Jr. & Princess Di had an affair?) and Cosmo. Both magazines she wouldn't be caught dead reading. TS called Baby Bro yesterday & told him to send flowers. He said he would. I called today to get the address & he said he hadn't done it. He wanted to give me his credit card so that I could do it because he was "busy". I told him that it wasn't a big deal to call 1-800-flowers. He finally said "you can have my credit card, but I don't want to send flowers". I told him that I didn't want his card and that he could do whatever he wanted to do & I would do what I want to do & hung up on him. He is just so selfish. TS asks me why I keep letting him get to me. I really don't want him to, but he's always been this way. Somehow, I expected him to pull some inner strength out of some random orifice & deal with this as a family. Don't ask me where I got that notion. He and GMF are not so far apart sometimes. I am starting to understand how families stop speaking. I don't want to go to that level, but I have no desire to see him or talk to him right now. We are supposed to go out to his place in the Hamptons a couple times this summer. I think we may not. I'll go when my dad is there visiting, because that was the plan, but that may be it. He has a right to his feelings and emotions and I have a right to not deal with his selfishness. Speaking of GMF.... she is now the pathetic lonely old lady. That's her new thing. I am to call her every day because she is lonely and needs someone to talk to. I think that this may be mostly true. But, I have to maintain my sanity and composure. And it's just not her turn. So, I'll call her once a week. But, if she is really lonely, she'll have to reach out to her friends, even if she doesn't want to "bother them". I may burn in hell, but as long as there's ice in my gin & tonic, I don't care. |
