Hello all,
Our favorite girl has been assessed with a health problem much more serious than the the environmental mold at her dwelling that we first suspected. She has been diagnosed with a sizable tumor in one of her lungs that is suspected to be cancerous. She was hospitalized at Emory Medical Center, which is one of the finest in the country, last night, and will remain for at least one more night. They were planning to do a biopsy this morning to assess specifically what we're dealing with, but complications arose due to an irregular heartbeat so they must stabilize that prior to performing the procedure. The doctor said the heartbeat issue is likely due to the stress of her condition in general and the impending procedure more specifically. He didn't seem overly concerned about it, but they will administer blood thinners to reduce the stroke risk involved and plan to do the biopsy tomorrow morning. This procedure involves going down her throat into the lungs and the doctor assures us that this procedure is not at all risky, merely uncomfortable. She will be numbed and drugged for this but not put under.
After the diagnosis is made, (which apparently will be in short order), decisions will be made on how to proceed. They say one possibility is to remove the growth along with a portion of one lung, which can then be restored to function at half it's previous capacity. Obviously this depends on what they discover, however. On the plus side, she has been able to find a pain killer that agrees with her and the pain she has been enduring in recent weeks has been checked for the time being. Also, I have encountered three doctors and other staff and found them to all be quite helpful and competent, from what I can tell. The biopsy guy came by and explained everything thoroughly, which obviously pleased Beth. Her main doctor doesn't have much of a sense of humor, but I'm thinking the more serious he is, the better, and he was also very good with explanation. I know this because Beth's sarcasm drew barely a grin from him, and I suspect this was only because his brain told him: "apparently that was humor, smile now." It was a chuckle-worthy line though, I can assure you.
Her spirits are as good as can be expected, and she is at least relieved to finally know what the fucking problem is. None of us are sure why it took a second trip to the ER and a couple other doctor visits to diagnose this, but I guess that's how it goes. The important thing now is that she seems to be in excellent, caring hands. She also has a particular couple of local friends as excellent advocates who also lend a feminine touch to assist with her ordeal while I play the role of the steely optimistic male. She only reluctantly allowed me to compile this update, as she didn't want to cause undue concern. Only when I asked her if she would want to know if one of you were in a similar predicament did she agree. I guess the point is she can assume you will all be full of hope and good wishes, but it would probably be best if she wasn't deluges with phone calls right now. I will try to stay diligent with these updates, as I will never be too far away from the situation. Love to all, and I'm sure we'll feel your positive <<
Regards,
Garrett
She is still stable and resting relatively comfortably. A heart guy did a sonar test on her today there in her room and he seems to think the heart issue is directly effected by the mass, as it is pinching her pulmonary artery. A consensus is building that she won't be out of the hospital until the tumor is removed, regardless of the biopsy results. Time will tell, of course, but it's looking like a multi-night stay to be sure. Her brother Tom and his wife Linda expect to be in town within a day or two to lend their support, but I imagine they will be the extent of visitors she'll be want for the immediate future. I'll let you know as that changed, needless to say. She appreciates your sentiments and I will keep you posted as I learn new info.
Tuesday, September 22, 2009, 10:04 PM
A friend pointed out that despite the fact that it took a while to diagnose this tumor it's a good sign that previous blood tests didn't produce a red flag showing cancer. Perhaps there is a good chance that the tumor is benign and/or was caught early enough and Beth will fully rebound, albeit emerging with 1.5 lungs. Just a thought to help keep positive. We are still expecting to have the biopsy done tomorrow morning. She is on medication to regulate her heartbeat to allow the procedure to proceed safely. She also had a cardiac guy run through a thick volume of questions regarding her heart history, etc. today for whatever that's worth. On the downside, she ran into an adverse reaction to the painkiller we thought was agreeing with her, experiencing nausea and general discomfort. Hopefully they'll find one that works sooner rather than later.. She hopes to try acupuncture tomorrow, as there are such professionals on staff at Emory. Another good thing about this hospital is the food was certainly a notch above normal hospital fare. She also has a room to herself, we assume out of sheer luck. The picture on the TV sucks though. ;)
Anyway, thanks again for the kind words and <<
Wednesday, September 23, 2009, 10:16 AM
She was moved to begin the biopsy procedure at 8:20 this morning. Again, they say this procedure is not dangerous but she will be zonked on various drugs, so it will be a while before I can update her condition. I'll relay info from the Doctor as soon as I have it..
Wednesday, September 23, 2009, 12:29 PM
Hello all. News, but not good. The diagnostic procedure went smoothly and Beth is fully lucid and deliberating options. The tumor is malignant, and it is in stage 3A, which means it's inoperable, in this case due to it's proximity to the pulmonary artery. Stage 4 is the worst, but neither of us asked what that was, but at least our situation could be worse I guess. The doctor biopsied various locations and found cancer in the lymph nodes and the lung. An oncologist is the next act, and he will first perform a PAT scan, which entails releasing sugars into the bloodstream to discover which cells absorb it most rapidly. This will determine how far the cancer has spread,and will happen later today.
At this point chemotherapy and radiation are the only real options and Beth is obviously troubled with this decision, as she's not your every day girl. She will hear out the oncologist and her attending physician and mull it over, I suppose. She says she's not particularly afraid at the moment, more resigned as if "what the hell are you gonna do?".
Thanks again for support and I'll keep you posted as always.
Wednesday, September 23, 2009, 8:29 PM
Hello again all,
Beth is still alert, relatively normal and currently chatting it up with Aunt Linda.
An oncologist showed up and answered questions for Beth regarding chemotherapy, but he could only answer in broad terms since there are no test results yet. It appears that the PET scan will be done tomorrow and we expect she will be released pending the PET scan results, which as noted below may take a few days. On the other hand, if her heart is still acting up, she may be kept later. Medication seems to be doing the trick on that end, as today was much better than yesterday. The good news is she has plenty of help and all are happy to do so. More tomorrow, of course.
The following is what Nancy, one of Beth's friend's, surmised prior to the oncologist showing up.
Hi Gang: I spent the day with Beth.. She got the biopsy report today: Stage 3 lung cancer Not operable because the mass is highly integrated with the vascular system at this point. The mass takes up half of the right lung. There is lymph node involvement in both lungs. They ordered a full body PET scan which will reveal whether the cancer has spread beyond the lungs and lymph nodes in the chest. The doctor who did the procedure gave her this brief news and said they had asked for the oncologist to come and talk with her. The oncologist never came and we were told he may not until the PET results are known because he cannot really recommend treatment without this info. Late in the day, a general medicine doctor dropped by on obligitory rounds, and we squeezed him for every piece of info we could get. He was not much help and said that the oncologist would discuss her options with her. He said it could take a few days to get the PET scan results, and the oncologist would not order any chemotherapy before reading the PET results. I was astonished and said that I found it hard to believe that they would give a patient such biopsy findings, and then leave the patient hanging for several days not knowing what their treatment options were. I asked if they would let her stay in the hospital until she starts the chemo (if she chooses that) and until they see whether there will be any effect on the tumor, and he said probably not. He agreed that without any treatment, the mass would continue to constrict the pulmonary valve, and press against the heart which is "agitating the heart" as he put it. We made a list of pointed questions for the oncologist when he does drop by. Beth has a lot of family coming down this weekend, and she is not really in the mood for too many visitors as of today anyway. She asked for your prayers....a full healing if it is her soul's choice, or to flow with the process the best that she can. I will keep you posted. Love, Nancy
Thursday, September 24, 2009, 3:11 PM
She has had the PET scan about an hour ago, and was pissed that she wasn't on adequate painkillers as she tried to lie still on the table for the procedure. Other than that the procedure went well and we are waiting for the results. Her heart has stabilized and we suspect she will be heading home tomorrow sometime whether the results are in or not, which is nice. Even though the test was not good times she is now in quite good spirits, cutting up with the chirpy, buoyant nurse and so forth. The attending physician was reading her chart to her and it turns out the cancer has begun eroding her ribcage structure, which would explain why her coughing produces such pain at times. She is going to meet with a pulmonary guy to discuss her treatment options/survival odds before she decides on whether she wants to undergo chemo or not. They say chemo treatment is more specific and they have better options for controlling side effects, so that will weigh into the decision too. BTW, I forgot to mention that an earlier diagnoses of Beth's condition was hampered by the fact that her tumor was hidden in x-rays by bones or something along those lines. Anyway, the net-net is we still have to wait for the PET scan to get real answers.
The radiation/oncology doctors dropped by, a man who appeared to be Jason Bateman's little brother and a female doctor who also appeared to have walked off the set of ER. He explained the process of radiation, which were obviously unpleasant. The doctor seemed highly competent based on his speaking skill, but then again so does Obama. Just kidding. He also sounded more optimistic about the managablility here and a relatively extended life, so we have that going for us. Anyway, I just got called for a work job, so I'll send this off now and update you in a few hours from now for sure.
Her sister-in-law arrived last night and daughter Dena will be arriving with her fam sometime Saturday.
By the way, Beth LOVES for me to read messages and thoughts from all of you. Light anecdotes from your day-to-day lives are certainly welcome along with the deep sentiments.
Thursday, September 24, 2009, 10:38 PM
Nothing really new since the last update. Expecting to be discharged tomorrow and just waiting for the test results. I meant to mention in the last update how amazing Beth is to observe through all of this. She has no self-pity and rarely complains unless the pain is significant, and even then she doesn't say much about it. She's just matter-of fact about discussing it and has a "well, what are you gonna do?" almost accepting outlook about the whole thing. Sometimes if she wasn't sitting in a hospital bed you wouldn't necessarily know there was a problem, especially when her pain meds are right. I imagine when she gets back to her house she'll be cool with more phone calls, although we all know she'll always be an introvert, so I may be speaking out of turn a bit. The other thing is she can field calls on the land line there instead of blasting her bare-bones cell phone plan into the stratosphere. Many have sent nice sentiments to me personally, which I appreciate. I am loathe to make any of this about me however, because caring for her is a privilege and I would never consider it to be a chore. It is emotionally draining though, but I'm trying to stay positive and stay busy doing these updates and staying abreast of the process. I intend to completely lose it only after receiving the most dire forecast, and I assume that simply won't be coming. I have been very lucky to have had no real personal tragedy in my life and I really don't intend to start now. I also suppose her good spirit in contagious, which is nice. She makes it easy to stay positive. I'm also happy Al Gore invented the internet, because it feels good to keep all of you posted in one fell swoop and I'm happy to help. Thanks again for all the kind responses and feel free to keep the messages coming, especially little life updates from your lives. She really likes those.
Saturday, September 26, 2009, 3:15 PM
She is home in the house she has moved into in her wonderfully loving community. It's kind of odd seeing her in real clothes again, up and about but obviously a very good thing. She is in god spirits and very lucid, although obviously her energy is down. The fact that this is the day her stuff is being moved from her previous residence next door is pretty much the last thing she needed to deal with, but it will be nice to have the ordeal behind her later today anyway. Thankfully her friends in the community have risen to teh occasion and are doing all of the legwork, packing, and so forth. Special thanks to Tovah, (tmelaver on this list), for spearheading the effort and just kicking ass in general. For those of you who don't know, Beth will now be living in a more spacious townhouse with the best kind of roommate: one who is rarely home. She is a great lady, as is pretty much everyone in her community even though they once gave me a lukewarm response to my stand-up act. Then again, who didn't? But enough about me.
The doctor had nothing new this morning upon discharge. and she went to visit the radiology guy and they placed her in position and "mapped out" where the treatment will occur on her body should she decide to go that route. She is on medication for the heartbeat issue, and that has been under control in the past 24 hours anyway, and we may assume that it's not a significant problem, otherwise she probably wouldn't be home right now. Her pain is lingering but manageable, and it seems she has found an agreeable painkilling method, which is nice.
She's thoroughly enjoying her visit with daughter Dena's family, which is also nice because as usual she was stressed at the prospect. It was very comfortable for the get-go when they arrived, as far as I could tell. That's about it for now. More as I hear news.
Tuesday, September 29, 2009, 9:26 PM
Just got back from hanging out for a few hours and I'm not going to lie: it was troubling. The combo of the pain killers and the extent of the disease has made lucidity elusive for our favorite girl. She is "there" in spurts, which is re-assuring I suppose, but loses her train of thought pretty regularly. Linda said that earlier in the day she was far sharper, which is also good news. I'm hoping for more of a happy medium between pain being killed and delusion, but I guess this is going to be part of the process that is so foreign to me. Linda says she's dispensing roughly half of what the advised dose would be, and we all know Beth wouldn't be interested in doing any more drugs than necessary and I know she's mentally there enough to still know the difference. Anyway... She did take one brief phone call that she enjoyed, but probably wouldn't have had I not more or less just handed her the phone. It's difficult for me to not force what I think would be good for her, (hearing loving voices), on her. We discussed it and think the best idea might be to just ask her now and then if there's anyone she wishes to talk to and leave it open for her to say a name if she's thinking of one. We also suspect that after she has her full prognosis and is at peace with how to proceed she will then be more willing to engage visitors. Things are obviously hectic and disjointed right now, but that should pass soon. I understand that most of you aren't the typical types who would drain a lot of energy from her with a visit, but it would obviously be a drain in the best of circumstances right now. What I'm trying to say is I assume that loving visits will be much more of a blessing than a drain after more is known. I did read her e-mails from her inbox today, and she enjoyed them as usual, short attention span or not. Sometimes she would begin with a response for me to type and tail off into nothingness, which wasn't exactly the highlight of my day, but what are you gonna do? Suffice it to say that despite the brief, (or non-existent) replies from her, your messages were heard. Big day tomorrow morning. I'm sure we'll all feel the love and go on its strength regardless of what we learn. Thanks for the support everyone.
Good night, Gar(y)rett PS: for you locals, I suppose a casserole or flowers wouldn't be the worst idea if you feel very compelled to contribute. Linda and Tom are doing yeoman's work with their assistance and a night or two off from cooking/meal planning wouldn't suck. (This is entirely me saying this, btw, I didn't even ask her.)
Wednesday, September 30, 2009, 12:55 PM
No drastic news from the doctors, i.e. nothing we didn't already know, really. Beth has been fully advised as to her options regarding radiation, what to expect, etc. From what I gathered the estimate for her life span from here without treatment is 4-6 months, but obviously that's merely a guess. With treatment will increase the quality of life in the meantime, but the cancer won't ever be cured and her life span will obviously increase accordingly up to a certain point. More later----I gotta go to work.
Friday, October 2, 2009, 9:03 PM
Well, the emergency room visit continues, some 10 hours later. She's still has a semi-itchy hives outbreak over most of her body. She worked up a fever of 105 for 30 minutes or so about an hour ago, but luckily they stabilized it. They suspect it may be related to an infection or something, but it also may be a allergic reaction to the drugs she's on currently. She's still coherent and manages a chuckle now and then as the current ER doctor, (who is quite hot and charming, I might add. She's exotic--- Indian or Arab). She's going over the standard questions about medications and recent symptoms, etc. You know, the kind of stuff that's on half a dozen forms she's already filled out and questions she's already answered earlier today. It's not like this is her third or fourth hospital---it's the same place. Do we really not have a computer database from which this info can be shared? Why on earth did this doctor just have to call Linda to figure out what medications Beth is currently using?
They have had to take her off the patch pain reliever that was so good at regulating her pain level in an effort to find the culprit for this latest allergic reaction, but a couple recent oxy's did the trick for the time being. She will also get something to control her itching. There are going to be more tests to determine the causes, but the fever thing has kind of thrown them a little. Beth is going for an MRI tomorrow afternoon to get a better idea of what they're dealing with in her brain area, to make sure there has been no spread up there. The Doctress From Which Fantasies Are Made said she plans on consulting with another doctor to find an agreeable pain relief plan. She also explained why they have to confirm the medications and details about patients regardless of what's in a database, explaining that often times patients tell different stories to different doctors and some are stubborn and fail to take certain meds, etcc. In other words, I think it's because people are stupid. Generally speaking, of course!
More updating later tonight, perhaps. "Stabilized" is the key word for now.
Sunday, October 4, 2009, 9:36 AM
Well, she's back! (relatively speaking). And I don't say that simply because I am a relative, but I mean relative to last night. She spent a long period yesterday and last night in a state of amnesia and delusion, but she wasn't thrashing about or anything. She would wake once in a while with a confused look and not know who I am. I went home for a few hours and got some sleep and got back here just in time for her awakening, both literally and figuratively. Right when she woke up she had no idea where she was or why she was here. I told her she had cancer, and she said "oh, that's right." Then she began to weep and apologize to me. I was so happy to have the chance to lay with her and comfort her again. I was very worried that such an opportunity had passed. I also got some decent one-liners in while I was feeding her and elicited a few chuckles, which was glorious.
She was offered different immunization shots by the nurse and turned them all down on the off chance that they might make her live longer. She is definitely ready to check out of this life now, and who could blame her. I can only hope that she is able to surrender to the flow and not fight this too hard. Seems like doing so would be to give cancer more credit and satisfaction than it deserves---like holding a grudge against some asshole with whom you have crossed paths.
She wants to get out of the hospital and knows for sure she doesn't want to expire here. She's not afraid of death at all right now, just not interested in the suffering part. I pointed out that I'm kind of jealous because she's going to get to see what's on the other side soon and she readily agreed. She's kind of excited about it, actually. She just told me about little "trips" she's taken recently, an advanced dream state in which she saw her niece Paige as real as I'm sitting here. She says it's unlike dreams, but more like a different plane of existence. This is happening only for a minute in the midst of a napping session. She'll speak out loud, move her hands for no apparent reason, and snap out of it---that's how I learned of this just now. It sounds similar to a DMT trip, which is a smokeable powder that triggers a large blast of serotonin, (released in small doses when we dream), from the pituitary gland, and hurls the user into an alternate reality---the fourth dimension if you will---for an intense but peaceful and highly entertaining 6-7 minutes. They say this same phenomenon takes place naturally the moment we are born and just after death as well. I suspect that Beth is experiences glimpses of this now, although I could be reading too far into things. I know I've taken several DMT trips personally and she's desccribing something between a trypical dream and a full-on DMT trip. But back to the present...
Paige is coming over solo in a few minutes, and Tom and Linda can take a well-deserved break. They have been far more than stellar with their assistance and deserve major props for dropping everything and representing. I'm glad they'll have some time off while Paige and I carry the ball for a while. Anyway, time to post this and move on with the day.
Sunday, October 4, 2009, 5:52 PM
Well, we finally encountered a douchebag doctor, Dr. Ribner.. It took about ten we've seen, I believe, but this guy had a very abrupt manner and had no charm whatsoever. First he barked out orders to turn every light on and then literally said: “Do you want me to kick these people out before I get started with discussing your condition?” Beth's eyes narrowed, and she curtly replied “in no way, shape, or form do I want these people to leave.” He then lied, saying: “I'm required to ask that.”. (If that's the case, every single other doctor we've seen is breaking the rules. ) Anyway, this was all done without introducing himself to either me or Paige or even acknowledging our presence. Beth was duly short with the guy---he might as well have been a cop who pulled her over. At one point he also literally said: “Well, it's better to not have an infectious disease that to have an infectious disease.”, and wasn't kidding.
Turns out he was the infectious disease doctor, and he came to the quick determination that Beth's rash was an allergic reaction to the narcotic patch that she wears, which makes sense, I guess. On the other hand, this is a holier-than-thou doctor in his late 40's working Sunday afternoons, (that is not exactly the top of his profession). If there was ever a doctor who would prompt an urge to get a second opinion, it would be this one. Happily Beth is doing fine on the pain with tylenol and another non-narcotic, so the patch is dispensable, at least for now. She is also fully lucid all through this day also, which is great.
The inadvertent good part about Dr. Ribner is that after his whirlwind of negative energy passed we had numerous laughs making fun of him. After Beth's energy pals coming by to meditate, (one nurse remarked about the love she could feel in the room), and Paige and I being laid back and cuddling with Beth all day, this clown might as well have poked us all with cattle prods. It was really quite funny.
Anyway, from what we can gather if the blood cultures taken Friday and today come back not indicating an infection, Beth will be back home. The hives/rash are receding and the fevers could easily be due to general stress and/or leftover reaction to the narcotics. The point is if the fever can be controlled with tylenol here, there's no reason it can't be in her own bed as well. That's my story, and I'm sticking to it. More news as it comes in, but that will probably be tomorrow because I'm going home. Daughter Dena is due in this evening for a few days and I will figureatively pass the attending offspring baton to her for a while.
Monday, October 5, 2009, 10:32 PM
Well, the die has been cast: Beth is going with Hospice and eschewing the diabolical traditional Western medicine mindset. Yes, she will pass on participating in the borderline torturous treatments that delay the inevitable that she is in fact somewhat excited to experience in the first place. Her condition here at the hospital has certainly stabilized enough for her to make it back to her beloved community and find some peace. Her rash is well on it's way out, and her bouts with fever have likewise subsided, which is nice. She spent the day amidst her daughter and niece Paige, followed by Cousin Rick, followed by me. I was happy to get the solo slot to end the day, for sure. We had wonderful deep and fruitful chats that drew both tears and laughs.
She also helped me write a joke for her eulogy, which threw us into laughter in the midst of crying. (I imagine this phenomenon creates the equivalent of a rainbow of some sort in a sterile hospital room, we really need to work on a name for it!) Obviously at her eulogy I will open with said joke, mostly because that will probably be the only words I manage, but it will be triumphant. Then again, I may be flattering myself. The sad fact is I'll never know because people will laugh out of sympathy even if the joke sucks. Any comic would rather bomb than get sympathy laughs, even if his Mom dies for you to get them. But I digress...
Beth will be back in her house tomorrow and greeting all three of her brother Tom's girls as the week progresses and Paige and daughter Dena depart to take care of their families. While she loves and adores those of you on this list, she's flat visited out right now, so I regret to say that outside the fam stuff won't be happening until next week at best. Even though she loves the talks and the visits, at the end of the day it's a massive drain on her energy. With the ebbs and flows this disease you never know when a really good day might pop up, and I'll certainly keep you posted on that front. Just know that she loves you all and appreciates greatly the notion that everyone wants to be with her---it's just not currently feasible.
So that's it for hospital updates, and I'm slightly saddened that there will be no further douchebag doctors to provide update fodder. I must say yesterday I had no real energy or desire to write anything outside of nuts and bolts stuff, but that guy was my muse. Here's hoping I find another one soon. Also, some of you have mentioned wanting to meet me and/or know more about the smart-ass on the keyboard. You're in (bad) luck, because you can sort of meet me at www.blogtv.com/people/witstream. It's a vlog I used to do quite consistently until it occurred to me that I wasn't going to make money at it anytime soon and it was keeping me from more productive things.
Thursday, October 8, 2009, 10:32 PM
Hello all. Beth is now comfortable and in her own bed, in her own room staying relaxed. Her pain in under control and she still has her sharpness of mind. The main problems now are pretty extreme shortness of breath with any amount of exertion and low overall energy. It seems that this will be par for the course from here on out. She enjoyed Katie's 4 mo old baby and will have more family in through the weekend, including her sister Sally and her husband Don, who have been in Europe until this week. The family caretakers are fine for the short term, but considerations and feasible helpers/care options are being discussed for the longer term, as Linda, Tom, and Dena can't drop everything indefinitely. I can carry the ball on weekends, but can't really afford to miss work weeks. I suggested that perhaps local friends could form a posse to take one day a week, but Beth is reluctant to impose and apprehensive about how much energy a relative scattershot schedule of people coming through might absorb. Obviously time will tell regarding all of this, but planning long term care will be a priority sooner or later. Looks like I just spent several lines thinking out loud, but I guess this gives you an idea of the feel around here today, and that's the point of the updates. yes? Anyway, that's all I have tonight. Looking forward to the weekend.
Monday, October 12, 2009, 1:30 PM
Hello, all.
Sorry for the lack of updates lately, but we've been in a consistent holding pattern the past few days. Beth has been mostly in her bed receiving family when she feels up to it but her energy wanes quickly sometimes. Happily there have been no complications along the lines of the rash or fever spikes that sent her to the hospital the last time. Main caretaker Dena has a cornucopia of pain relievers, anti-constipators, and anti-anxiety meds to dispense as needed and none of them cause side effects other than a rather constant spaciness. She is on constant oxygen, thanks to the pump next to her bed that makes a quite soothing noise as it does it's business. It takes very little for her to be out of breath, and this causes her anxiety for a couple of minutes until she gets it back, needless to say. All in all she is doing relatively well, but certainly not great.
Beth and I are currently tackling the task of writing farewell letters to two beloved constituencies: her clients in her energy pracctice, and her friends and neighbors in her co-housing community. She is sharp enough to know the sentiments she wishes to share and also coins phrases in pertinent spots. I clean it up, make suggestions, and also make jokes of questionable taste along the way to make her laugh. We have always enjoyed writing/editing things together, so this is fun for both of us despite the garish circumstances. I must say that freely making jokes about death is a whole new topic I have never really mined, for obvious reasons. Having a Mother who isn't afraid of dying and can laugh at gallows humor can be fun---who knew?. (I just read the last few sentences to her and she confirmed that she's still not afraid of dying and doesn't expect this to change, but I digress)
Sister Sally and hubby Don are in town for a visit, which means a lot to Beth. All of Uncle Tom's family has been around the past several days at various times. His oldest Kate (The Great) came for a few days with her four month old Elsie, who put a smile on everyone's face. His youngest Jenny brightened everything she was around as usual, and Becky is still here with her hubby Jaime keeping things light and bright. At a rippling 6'3”, 275, Jaime has brought a special skill to the table: carrying Beth downstairs, threshold-style, so she can sit in the living room for a while. Oddly, her making it down there caused a bit of a problem...
She was seated in a full living room when I arrived last evening, and I assumed she had taken an abrupt turn for the better. So then “SCOTT” showed up on my caller id, so thinking it was Cousin Scott, who has called a number of times, I answered it. Turns out it was my local friend Scott, who I hadn't spoken with in at least a year. It also turns out that they sound almost exactly alike. So I'm like: “Scott---you've finally called at a great time---Beth and a bunch of cousins are sitting here---say “hi” to her!” So my buddy Scott, (who at least has met Beth several times), was thrust into a conversation with her, and Beth thinks she's talking to her beloved nephew. Oops!
So Beth carried on a lovely two or three minute conversation with Scott amidst the clamor in the living room. She says she suspected Scott had a cold at one point, but never mentioned it---things just seemed slightly off. Anyway, I grab the phone back and hear: “Scott Helyer”. So I'm like: “You know Scott Helyer? How'd you meet him?” He responds: “No, idiot---I'M SCOTT HELYER!” Boy, did I feel like a heel!
I'm happy to report that Beth now has music in her room, thanks to a rarely used, nice-sounding mini hi-fi system I have had sitting around. I have brought over a number of her favorite CD's for her to listen to and things are good along those lines. Dena has proven to be a most stellar caretaker, being on the job more or less constantly for the past week. Juggling the dispensing of the medications and all the other things is no easy task, but she is making it look as such. She has put her life on hold to be here, so thanks to her and her hubby Chris and son Austin for making the sacrifice of lending her skills to us. Brother Tom and Linda will be heading out Thursday to take care of things on the home front after being here upwards of three weeks making invaluable contributions to the cause as well. Cousin Becky has signed on until this Sunday, much to Beth's delight.
So that's about it for now. Sorry for the delayed update, but you'll have that.
Saturday, October 17, 2009, 6:24 PM
Sorry for the delay in writing, but I was consumed with work recently. Another reason is there's no real news to report. Beth has been about the same, up and down with some moments better than others. She's been a bit more sharp the past couple of days, which is nice, and Cousin Becky is going through books, pictures, and so forth with her. She is really enjoying the company of loved ones. Tom and Linda are still here, as Tom chose to stay on a while longer at Beth's request. He was scheduled for some volunteer fireman training back home, but will be able to re-schedule for some other time down the road. Cousin Scott came through Wednesday/Thursday and Beth was very happy to see him too. That's about it for now. More later, of course...
Thursday, October 22, 2009, 1:28 PM
..and by "moving edition", I mean literally, not necessarily emotionally. After many days in Beth's new apartment in her co-housing community, the hard decision has been made to take Beth up to her brother Tom's house in lovely Mathews, VA. A number of factors converged to make this a necessity, first and foremost the need for her primary caretakers: Dena and Tom, to be near their homes and families. In addition, her roommate, the most gracious Joanie, obviously doesn't deserve to have an entire family elbowing her out of her own dwelling for weeks on end. So we have rented an RV to transport Beth, (on her own Temperpedic mattress, I might add), to Virginia this Saturday. Another factor in this decision is Beth's health, which is relatively stellar. We consulted with her Hospice caretaker yesterday regarding the decision and she declared that Beth is nowhere near her final time at the moment, barring random heart failure. She is strong otherwise and still of sound mind for most of the day. Hospice estimated two to perhaps even eight months from now, although that's obviously merely an educated guess. This was obviously not an easy decision for Beth or any of us to take her away from her beloved friends and community, but ultimately we all believe it is for the best. She will be liberated from the bed in her one small room, instead having the run of the extensive first floor of Tom's riverfront home. She will also be able to extend visiting with more of her relatives, who will also be in much greater comfort. It is hard for me to have her leaving my city, but I plan on spending extensive time at Tom's for this final time, so things will be OK. Since I need to work most of the time and can't be with her all of the time I never had a say one way or the other, and that's fine. I am so sorry for not responding to e-mails lately, but please do not take it personally. There are connectivity issues with my computer and windows of opportunity with Beth to get her input that are rather small. Dena and I are in the process of going through her belongings today and I am heading to her office right now to process that stuff, so i'll get this out and write more sooner rather than later next time.
Sunday, October 25, 2009, 11:39 AM
Hello all.
Well, the stress is about to subside, as we have made it to the friendly confines of Uncles Tom's country estate. After a couple days of moving prep and upheaval, Beth was finally placed aboard a 29 foot RV, onto her own mattress in the back, no less. It was a quite sad affair, as leaving her community was one of the hardest things she's ever done. After she was seated on the bed in the RV she was able to look out the window and wave at her assembled well-wishers before we pulled away, which was nice. The drive was as smooth as could be expected, although we encountered some rain towards the end of the trip. Having this task behind us is a very large relief to all involved, and Beth even allowed that "this might turn out OK" along the way. She was in a decent mood for most of the trip as well, and emerged no worse for the wear.
Beth's friend from Ohio Paul, (who adopted her bird Priscilla), was awaiting Beth's arrival at Tom's house, much to her surprise and delight. He was helpful with the transition on this end and Beth is always happy to see one of her best friends. She is currently ensconced in a new recliner in the living room here, enjoying her family and two cavorting little family dogs who are going to pro-create as soon as the time is right. But enough about canine copulation. Beth and the family want the thank all of those at ELC for their assistance and support during her travails and moving process----it would have been much more difficult without all of your help. Also, when Tom told you to come up and visit "any time", he wasn't kidding*, as is there is more than enough space for visitors here, and the vibe is always welcoming. This place is a quiet, enjoyable respite for most everyone.
Anyway, I will wrap this up for now. Have a good rest of the weekend!
Tuesday, October 27, 2009, 11:41 PM
Hello all, Beth is now in the peaceful end bedroom of Tom and Linda's house, on her own bed, which is nice. Her first night in her new environs was punctuated by a stunning sunset over the river---like a huge forest fire. We met the new Hospice crew, and they seemed as nice and capable and they always do. They are also expecting a doctor to come by for a visit and alter her pain management system so Tom, Linda, and Dena will be free of rising a couple of times a night to administer mediation. Her spirits were relatively good, and many of her favorite personal effects are now in view for her in her new place, which is nice. She also enjoys regular visits from the adorable and sweet household Westie terrier Suzy, who I assume has no idea how lucky she is to be in a place to visit Beth regularly. I had to leave her yesterday for just under a month so I can make a living here in the ATL. Since she appears to be relatively healthy this is an option for now, but I will be "on call" from here on out, in addition to spending a good portion of the Holidays with her. Needless to say this was pretty gut-wrenching, especially since I thought I had come to terms with her death a couple of weeks ago. Silly of me to think this, in retrospect. But enough about me, the point is I will not be the point person for any significant updates for the next few weeks. I assume that Linda can provide this service, as I was lucky enough to pluck the following note from Facebook...
"She was tired today. Both Dena and Gary left yesterday and she was just spent. We started on the Methadone today and I think that is going to go well. We just kept chasing the pain and our average pain level was about a 4 or 5. I think a change was in order. Kaycee in Atlanta had prescribed the methadone but Beth has been hesitant. Tommy met with the Doctor here this morning and he explained that the methadone was good with bone pain and the result would be that we are giving Beth medicine less often. After Tom came back and explained it to Beth she was agreeable so we have started that this afternoon."
So this is where we stand for now. More updates as they come in.
Wednesday, November 4, 2009, 2:12 PM
Hello all. Sorry for the lack of updates, but I am no longer with her until this coming Monday, assuming I can shake the flu that has kicked my ass over the past three days. I just spoke with Beth on the phone and she sounded odd, but strong. We had a brief conversation in which she was, according to Linda, more lucid and together than she has been in days. It's sweet to know that she rallied for me. She's seated out in the living room awaiting a doctor visit now. Apparently the signs that time is short are starting to show: discoloration, extended sleeping time, no appetite, etc. I am copying two updates that came from Aunt Linda below:
Nov. 1:
"Beth is doing well and has been resting as much as possible. She has been out in the lazy boy a couple of times. There has been a good bit of memory loss. At times we say it is not Groundhog Day ..it is Groundhog minute. We explain to her why we are here. Yesterday she started to get up and wanted to go to her car and go home. We start the story again. While this is difficult on us it is much harder for Beth. Last night we had a talk and she asked me how long she has been like this and I told her that she has been in and out at times but this has been pretty much full time for the last two days. She also refused to take her medicine for 16 hours. She said she was fine and hadn't decided to take the medicine or not. We don't have the heart to force her and I told her that eventually she would begin to feel the pain and just to let us know and we would get the medicine. So at about 2:00p.m. yesterday she was ready. I told her about this in the evening when we had a lucid (I am using this term very loosely) conservation. I told her that when I have a problem on her care I ask myself "what would Beth do" and then I get my answer. She would not have wanted us to force her to take her medicine. Not for her sake but for ours. Because it would have hurt us so deeply.
She got cards from Judy Koch, Cousin Babs, Bob Goodman, Tari Ricey, Kitchell and Mardy. If you would let them know she got their cards I know Beth would appreciate it.
She is still our precious Beth. This morning I said she looked like the night had gone well. She said, "of course it did because I am here with you". I am holding on to that for when she again asks, "why am I here, where is my car, how did I get here, where are my things.....?
I'm sending love...you send us (and especially Beth)... ...Peace"
And this one, sent this morning, subject line: "Beth the Warrior"
“While we talk a good bit of Beth's struggles I want to honor her bravery. She is a warrior goddess, bowed but not broken and the spirit of Beth, her kindness and her grace continue to shine like a beacon to those of us blessed to be with her.
After sleeping all day yesterday with just two periods of wakefulness she woke up (she was resting in the big lazy boy). She said she wanted to come sit at the dinner table with us. Tommy got the wheelchair and Beth just sat and enjoyed being at dinner and even ate a bite of food. Afterward Dena was wheeling Beth back to the chair and Beth said she wanted to sit of the sofa and just "hang out". (When Beth is speaking it is just at a whisper, the scene of this is Dena leaning down close to her Momma's face to hear Beth's response to Dena's question).
Dena was helping Beth choose a shirt to wear and there is a plaid shirt Beth likes. Dena said "This is the shirt Gary doesn't like", Beth replies in a whisper "No, he doesn't like it......in fact he despises it". We laughed and Beth smiled with a gleam in her eyes.
This morning Dena was warming lotion to put on Beth and I was sitting close to Beth as she had her feet on the floor and doesn't have much strength. I kissed her on the knee and said "I love you", she replied, "I love you too Linda Lakin". I told her that she is so brave and she give me the 'give me a break look'. I said no, really, you just let that sink into that heart of yours because its true. Then comes from Beth who I am hugging by now, "thank you"
As I said, I intend to be up there on Monday, and I'll try to fill you in sometime soon after.
Monday, November 9, 2009, 12:14 PM
Hello all.
I am lying next to our girl as I type, having finally arrived last night. She has made significant progress towards the release of her earthly vessel over the past few days, as she is now sleeping almost constantly. Her breaths are shallow, and a number of seconds pass before the next one. She is very stiff, and often her eyes are open, although it appears she's not really looking at anything. I'm quite curious as to what she is "seeing", as it may have something to do with a light at the end a tunnel or whatever is at death's door. Remarkably, she can still indicate when she needs to go to the bathroom and is still using the pottie. That's the only way to tell she's aware of her surroundings at all, however, as she doesn't make expressions or seem to realize I'm here. I feel blessed to have been able to share hours of quality time with her before her current state emerged, that's for sure.
It's also a wonderful thing that Beth has been taken care of with as much love, attentiveness, and competence as anyone ever in her final weeks. Dena, Tom, and Linda have been stalwarts at her side constantly over the past month or so, and for this I will be eternally grateful. Hospice has been great too, of course, but with this crew on the job the were almost superfluous. And of course her spiritual support back in Atlanta was tremendous too. If there are any guilty feelings from her caring gang back there for not making it here for a visit, not to worry---lucidty was not consistent following her move anyway. I'm sure she would've appreciated the love and gesture, but love was certainly not something she has been lacking the past couple of months---the outpouring was awesome.
I must say that all of the heart-felt messages have made me quite proud of her. It's one thing to love my Mom as much as could be, but seeing seemingly endless messages of love and sympathy was kind of like taking an inventory of the amount of love she has in the world. She really is incredible, and I probably took this for granted more than I realized. Thanks to all of you for getting me to snap out of it!
That's about it for now. Tell someone you love them today!
Saturday, November 14, 2009, 9:39 AM
Well, our girl has left her earthly surroundings for flights of fancy the rest of us can only dream about. The official time was 9:04, but as far as the coroner knows it will be a bit later than that, as Dena is administering a final bath as Beth requested, and then clothing her in a previously selected outfit for the rest of the process. She showed remarkable strength in her final days, and to say we'll miss her dearly is an understatement for the ages. She will be cremated as she wished, and her remains will join us in Atlanta for a memorial service on a date to be determined. I will keep you posted on those details, needless to say. Thanks all for your support through all of this and I look forward to seeing many of you in person, where we can celebrate her extraordinary life, energy, and being.
Monday, December 14, 2009, 8:31 PM
Hello all, This will probably be the final update, although I may end up with text of some of the poems that were read at Beth's memorial service to pass along. First off all, the weather gods dialed up a most appropriate day for an (ex) Ohio girl: a cold drizzle and constantly gray skies. These conditions probably matched most attendees moods as they arrived as well, but I for one can say gloomy is the last emotion I felt as I exited the community center of East Lake Commons in the late afternoon...
This Memorial was downright fantastic. It was tear-jerking, yet uplifting. Sad, but remarkably inspiring. It was more than a tribute to Beth---it was a celebration of her uniqueness, intelligence, and love through the eyes and hearts of so many who loved her. More importantly, for me anyway, was the lack of religious dogma or any sort of message that veered away from the memory of Beth. There was an ordained Minister and ELC resident named Kate attending, but she played a very low-key role, which is not to say her role was not inspired and very much appreciated.
The smallish, (for this type of event, anyway), space was standing room only, as sixteen family members joined her local friends and ELC people to honor certainly one of the most unique individuals any of us have known. The tribute began with Beth's friend from the Healing world Nancy saying a few words, or maybe it was the Minister Kate kicking things off---I don't quite recall. The fact is the initial details of the "ceremony" portion of the afternoon are fuzzy for me because I was "on deck", i.e. about to hit the stage with no notes, so I spent some of the time thinking about what I would say. The point is the occasion was not a slave to form, it was dedicated to feel---just as Beth would've wanted. ( I should also take this time to thank my sister Dena, and Beth's friends Nancy, Amy, Karen, and Tovah for putting this all together. Forgive me if I've left anyone out.)
The majority of the occasion was spent as it should be: with remembrances of our beloved passed. This process was started in earnest by Dena, who had a nice laundry list of details about Beth, such as her swimming ability, her being President of the school borad, and other tidbits about which some people wouldn't be aware. She did a stellar job and more importantly, kept it together, which is more than I had any chance of doing, which is why my speech was kept brief. When it was time for she and I to speak, Kate looked right at me to stand up, as she didn't know Dena and I had decided for her to go first. So I stand up with Dena, who I then asked if I should stand with her. She relied: "well, it's kind of long." I then addressed the crowd, saying something like: "Well she said her thing is kind of long, so I'll be back in a few minutes.", and then a sat back down. This comment alone drew laughs, so I knew I was in the comedian's catbird seat for my impending story/joke. For the moment I forgot I had a dead Mom.
Anyway, when it was time for me to speak I had what I believe to be the perfect line: "I must say as a former comedian I relish this audience, because it's one of the few out there more sympathetic than Oprah's." Oh, the house came down! Well perhaps not, but I think attendees would agree the comment was well-played. So I mention that I'm keeping things short in order to keep it together, and said something about the course of these updates pretty much covering what my Mom meant to me. I then described the "death bed" episode between Beth and I during her second hospital stay.
The fact is there wasn't any secret exchanging of things we really had to say to each other at that point, because we were open books to each other. (As those who know me can attest, I'm not the type to candy coat things or hold back details on my life, and this naturally carried over to my relationship with Beth.) Anyway, I asked her if she had a death bed wish to share, and she did so. Obviously this was a heavy moment, and we were duly weeping about it and carrying on. I then suggested that what she might have said in this spot was: "Well, I've tried every goddamned thing I could think of to get you to get off your ass and make something of yourself, so now I'm just going to try dying." We laughed and laughed. And laughed some more. I then thanked the attendees, etc. and got the hell off the stage. I was happy to have this over with so I could fully pay attention to the rest of the speakers, but there were a couple of things in particular I wish I had said...
First of all, besides the obvious, I am probably most thankful to Beth for the love of words that she passed on to me. She had a vast vocabulary, and I can recall castigating her about it one time in my adolescent idiocy. "Why do you have to use a word with three syllables when one is good enough?" She probably reacted with grace or a duly snide remark, but I'll never forget how stupid it was for me to bitch about such a thing. The other thing I'll never forget was the look of love she had for me whenever whe saw me after some time had passed between sharing a space. More specifically, when I was a child she would come into my room every morning when it was time for me to arise and lift the shade on the window. She would then turn to look at me and cast the most wonderful, loving glow in the world. I find the lines of The Beatles' "Golden Slumbers" to describe this so beautifully, and it gets me every time: "Golden slumbers fill your eyes. Smiles awake you when you rise." Oh, the things I took for granted and can never get back!
The other thing more than a few people were surprised to learn was Beth had an evil twin, who emerged whenever she was confronted with bureaucratic authority, such as a cop who had just pulled her over. She was not one to play nice in an effort to get out of the ticket. To the contrary, her eyes would narrow and her answers became very curt and short. This trait also extrended to people at the DMV counter, or anywhere else where stupid rules were in place to make her life harder. I don't mean this to sound like she shot the messenger---she was still cordial, (except to cops), but authority drove her absolutely batty. I'm sure her elected representatives who received many letters from her know what I mean. Anyway, enough about me and my recollections---back to the tribute.
Following me was a string of those with personal anecdotes---a lot of family members and good friends. Three of my cousins read wonderful poems that were most fitting, and the aforementioned Karen read a passage from a Tibetian volume after her adorable eight year old told a beautiful story about learning of Beth's passing. Prior to Karen's reading, she made note of how Beth's books, books, and more books that were gobbled up by the community always included personally highlighted, underlined, and circled text, as was her practice, along with arrows and margin notes for good measure. The two personal outpourings that stuck with me the most were from my Uncle Tom's wife Linda and a great old friend of Beth's named Laurie McDade.
Linda's words were an anology about migrating birds, and how their formations allow one in the fore, while the others can conserve energy, or "draft" in the stream. She likened it specifically to the difficult task of caring for Beth in the final weeks, and the superb "tag team", (my term), that developed for both physical and emotional support. She also pointed out that Beth was a lead bird who made everyone's trip a little easier, and she couldn't have been more right.
Laurie, on the other hand, wasn't able to spend as much time with Beth at the end as she wanted. Much to her consternation she was kept at arm's length from Beth due to a string of heart felt, lengthy e-mails that frankly has those of us playing protectors of Beth's waning energy more than a little concerned. I'm sure those of us closest to the dearly departed would agree that having now met her, keeping her away was a mistake. Sure she was a bit over-the-top with the e-mails and insistence for a visit, but she is in fact a fully sane, highly intelligent and lovable person. (Beth's friend---big surprise!) Anyway, she gave a wonderful speech alluding to the above, and also how Beth dropped everything to come hundreds of miles, unannounced, to help Laurie in a crisis. She simply wanted to return the favor, but as luck would have it, Beth was chock full of help in this case.
Anyway, long story short, Laurie was able to let out all that she wanted to say in this forum, and did so with great satisfaction, humor, and grace. She also make it a point to appreciate Beth's unique phrases, such as "Cursed Spite!", and the best sympathetic phrase ever uttered when she heard of someones pain: "Oh, honey." If you're lucky enough to be familiar with that one, you know that was a significant tear-jerker, and you can hear it right now. I'm happy to report that Laurie and her cool hubby David were brought into the family gathering that went into the evening up at their hotel, so we were all able to allay our guilt for how we treated this wonderful person in the midst of being over-protective of Beth.
The tribute ended in a most unconventional, (obviously appropriate), fashion, as the girls in the family emerged through the gathering to the front in a slow, shuffle kind of dance/float to some beautiful music. People joined in and this is how it ended, along with tears and big bear hugs all around. It was the perfect ending to what I can only describe as a celebration of grief, if that makes any sense. I've been proud of my tremendous family and of Beth specifically many times, but never in any way like this. We were all deeply saddened, but I'm sure also fully aware of how lucky we still are to have each other and to have been trained to take on life as disciples of one of the greatest people to ever walk the earth. So ultimately it was a celebration and a thank you. Yes, in honor of our leading left-of-center person's passing, we had a damn celebration of her death. I'm sure somewhere she was beaming---she wouldn't have wanted it any other way. "Truly."
PS: Then we caught a little wine buzz and enojyed finger foods and conversation. So nice meeting some of you---thanks for saying hi and the kind words.
No comments:
Post a Comment