Leah Rule's Journal
HELLO FROM THE FARM
Written Nov 29, 2012 5:35pmhello from the farm. it's been nearly three weeks since our last post. in that time we've set leah up in hospice. unfortunately, it has not been a simple or easy transition. it has now been two weeks of hospice care and i guess we're finally getting settled in (they have business hours mon-fri 9-5 and leah's disease doesn't "wear a watch", so to speak).we (myself, leah, ken, shirley) have been frustrated because when leah was "sold the idea" of hospice, she really liked that their main assurance was that they could make her comfortable and rid her of her pain.unfortunately, up until three nights ago, she's been stuck in that hellish "groundhog day". chest pain and vomiting. chest pain and vomiting. chest pain and vomiting. so here is our dear leah, in/on/under hospice and nothing has changed. this has been really hard on her, as she feels it's just another dashed hope. my poor, beautiful girl. she just can't catch a break. all she wants now is to pass on with some dignity.so she had me to make some calls and demand some action (yes, she's still spunky!). after the dust settled, with a few drugs added, others shifted, and dosages adjusted, we seem to have found an overdue moment of relief. as mentioned above, it's now been three days without vomiting and minimal chest pain. of course the pay off is that leah is hooked to a pump that delivers her a constant supply of morphine directly into her blood (thru her port) and this, plus her fentanyl patch tend to disconnect her with reality. we have been told that most patients' bodies acclimate to the narcotics and come around with a clearer mind and some regained strength. we're hoping this will be the case, though, as we all know, leah is not, nor has she ever been, like "most patients".so with her pain level currently mild and the vomiting currently ceased leah sleeps her days away. she has a hard time differentiating our presence from her dreams/hallucinations. she has very little strength and is rarely getting out of bed. she still asks for food occasionally (popsicle, mac/cheese, yogurt, mashed potatoes, granola bar), but for the most part, because of her ravaged digestive system, she's done with food. we were told by one of the nurses that her body is eating itself (mostly the muscles) thus her shrinking size and bloody urine. she is probably now under 80 lbs.as far as visitors, we've been slowly bringing out our families (my family, the iowa rules are arriving tomorrow). maybe by next week we can start scheduling a few of you to stop by. just know that while she likes the thought of visits, she also is still proud and frets about people seeing her in this state. also she has so little energy that just being awake is exhausting. so please be patient and we'll see how she's doing in a few days.speaking of a few days, leah asked one of the visiting nurses "how long?" and the reply was: "4 minutes without oxygen, 4 days without water, and 4 weeks without food, though most of my patients are much older than you, so with your young body and strong heart, it's hard to say".on a positive note, leah had a massage yesterday and really enjoyed it, though she slept thru most of it. the masseuse, who is holistic, told leah that she has great energy (of course we've all known that for a real long time, but it's still nice to hear from a total stranger) and liked that there was a cat or two and a dog in bed with her sharing her energy.lastly, leah asked me to tell all of you that she has no fear. she says we're doing a pretty good job taking care of her and she tells me that i'm the best nurse she's had yet. i try to argue and tell her that if i was as good as she thinks i am she wouldn't be sick. she says i'm being silly and to keep doing what i'm doing, which is being with her.thank you. there is no doubt that if love cured all, leah would be one of the healthiest girls in the world.she hopes to take all of this wonderful energy, with her on her journey, as strength. she is not afraid.much love from greenvale robps after reading this to leah she asked that i add: she hope's you will understand, due to our situation, we are behind on our thank you cards and will get them out eventually.
NO EASY WAY.....
Written Nov 10, 2012 9:35pmhello. we have learned that the most recent test result numbers, of the CA 19-9 tumor marker, have more than doubled since this third round of chemo has begun. at over 900 the number is at the highest level ever. given leah's continuing level of pain, discomfort and inability to eat, this is not surprising.leah has chosen to quit the chemo treatments and make the move towards hospice. we will be contacting dr. basu to make the necessary arrangements.while at the eau claire hospital, a short time back, leah had several discussions with a palliative care nurse, who comforted her with the information that in house/home hospice could be arranged and that her pain could/would be managed. these are now the steps we are taking.we understand that many of you will wish to visit leah. please allow us some time to acclimate to this new "phase" of hospice and be assured we will communicate visiting arrangements in the near future.as always, with heavy and grateful hearts, we thank each and every one of you for your continued love and support over this long and brutal ordeal.with lots of love rob and leah
Groundhog Day continues.....
Written Nov 1, 2012 8:34pmhello. leah has once again asked me to update this here site. the last entry was at the beginning of her 11 day stay at the hospital. during her stay she received TPN treatments daily. a week in and we were told of the last test result we'd been waiting for (the cytology from her previous paracentesis-testing the fluid they drained out of her two weeks earlier). it tested positive for active cancer cells.so on friday the 19th of october, they began leah's next round of chemo. this is a new drug, the 7th different one they have tried. whereas the first two go rounds of chemo were in groups of three (different drugs), this time is only one. it is called GEMCITABINE and is used to treat breast, ovarian, non-small cell lung, and pancreatic cancers. she is set up to have this drug administered once weekly for 3 weeks, then a week off. for three months. we are told that they are giving her a moderate dose that should have minimal side effects, but unfortunately, leah's body doesn't listen to the doctors. so far she has had two doses of the new chemo and both times it has left her extremely miserable and in bed for days. by the 5th or 6th day she seems to be past the worst of it, then they hit her again. thus, groundhog day continues. misery, pain and vomiting. repeat.next week, b4 the chemo, they are doing labs (blood work) to see if the last 2 treatments have slowed down the cancer-they do this with the CA-19-9 test. we need to at least see a slow down or leveling off of this number. ideally it is dropping, but we are trying to not be unrealistic in our expectations.leah is home now, though it has been a rough week. chemo monday. paracentesis tuesday (they drained out 4.5 liters, mostly, we think, a result of the TPN liquid diet), and yesterday she went in for more hydration. tomorrow she is scheduled for more TPN (an 8-9 hour process). hopefully, any day now we will see some positive results from the chemo (mainly that her digestive system will wake up and let her eat and not vomit). if/when this happens, she can discontinue the TPN and begin to get strong again. we feel that the stronger she can be, the less the chemo will knock her down, and the sooner her body can start fighting back. that is the ultimate goal.leah has not given up, though she's been kicked to the edge way to many times. she says this is the last chance for chemo.on a lighter note, this past saturday was our anniversary (12 yrs married, 16 together, to the day). we spent the day/night at home (better than the hospital). leah had a bowl of noodles for dinner and it stayed down (organic mac/cheese)-the first meal to do so in many weeks. and as of the last couple of days, she can drink some water and it will NOT come back up immediately (though it does later on), so she can hold down most of her meds. so there is that.right now, as the days are broken down into long, slow moving hours, we grasp onto the small signs that things are coming around, day after day after day. groundhog day indeed. this afternoon ken/shirley went back to their home to do winter things and sleep in their own bed. they will be back for the next chemo on tues, ELECTION DAY. leah has told me that if i have to, i will carry her into the small town hall where we vote so she can cast her vote. so we ask all of you, if able/willing, please VOTE tuesday. we feel that it is an important and under- appreciated privilege.lastly, as always, leah and i thank you all for your support during this seemingly never-ending ordeal. it humbles us.if it can be done, leah will do it.keep on loving those you love. rob