11 Temmuz 2012 Çarşamba
10 Temmuz 2012 Salı
9 Temmuz 2012 Pazartesi
Radiation Treatments by Ambulance
While Dave was in the hospital they started radiation treatments to his T8 vertebrae area. Because Dave couldn't move hardly at all without tremendous pain and effort, "people" were sent to get him. "People" turned out to be an ambulance crew. Ok, so we are across the street from the Cancer Center and Dave had to be taken out on a gurney, into an ambulance, driven across the street, taken in, radiated, back into the ambulance, across the street, into his bed. This little diddy costs $1,000. We racked up quite a bill. Now I understand the ambulance folks need to get paid, but I have to say, why wouldn't a wonderful hospital like Rideout Memorial and the UC Davis Cancer Center have provisions for this? I could see it and I could walk to it. A skywalk, internal personnel, something. One of the more INSANE things you deal with when serious illness hits you the way it does. What are you going to do?
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Brock's Ice Cream Parlor-Blast From My Past
Wednesday, June 25, 2008Today the Cancer Center seemed to be having some scheduling issues, I think the machine was "down" and needed some repairs. So after rescheduling us twice we finally made it over there around 3pm. It screwed up my day a bit with plans to go to the grocery store and make dinner for everyone and so on. But like many plans that go awry, something cool and wonderful occurs.
Since the day was shot, on our way home we stopped at Brock's Ice Cream parlor in Yuba City. Long before Baskin Robbins 31 Flavors, for me, there was Brock's Ice Cream. When we lived at Beale AFB, we would come to town a couple times a year for school shoes and clothes. It was a BIG DEAL for my sister and I and the best part was always stopping at Brock's for a cone! I couldn't believe it was still around and except for a small change on the interior to accommodate folks to sit inside, it had not changed a bit. They make their own ice cream and it is wonderful. It brought back such wonderful pleasure moments for me - in the midst of the tornado, it was a lovely respite. Not too mention getting to share a childhood experience with my husband.
When Dan got home, I did manage to get to the grocery store and make some Beef 'n Barley Stew.
If you find yourself going through difficult times, whatever it is, don't underestimate the value of small joys like this. Its an old story... we take these things for granted. Well maybe we do, but maybe we are lucky enough to not have a reason to view them in a deeper way. I don't know... its an interesting and old concept. But I will say, it had a dual meaning for me. I used to go there with my father and thinking of him always makes me smile. Now, here I was, in a little ice cream place sharing it with Dave in the middle of our crisis, and both he and I had a moment, just a moment, of something pleasurable and peaceful, mundane, normal. I have found that these "little" things really can recharge me and sustain me. When my mother was dying, at my home, and my life gradually and appropriately got smaller and smaller as her needs got greater and greater, I would sit out on my stoop in the backyard with a cup of coffee on a sunny morning and watch the squirrel antics, the birds at the feeder and the baby fox romping around on their way back to the den. I found it filled me up somehow and gave me the strength to easily and fully enjoy my mother's company and care for her as she deteriorated. It can all be such a mishmash really. But I felt very strongly it was important for me to embrace the small beautiful things in the world - it uplifted me somehow, and that viewpoint was serving me well now with Dave. It was familiar to me and something to share with Dave.
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Our 27th Wedding Anniversary
Today we got Dave's meds from the Specialty Pharmacy. When you have highly controlled substances like Thalidomide, it can't be carried or dispensed by a regular pharmacy. Dave has to do an interview each time a prescription is filled.
He put on some street clothes and we decided to high tail it an hour to Elk Grove to look a the new house! I have only seen pictures of the progress. Its almost finished, all the tile and most of the appliances are in (sans the refrigerator!). The painters were finishing up all the painting and the backyard was graded and cleaned up.
From there we headed back to Marysville for another radiation treatment. Dave is holding up very well. Its an hour+ drive each way.
Oh and yes, today, is our 27th Wedding Anniversary. It was not something we really wanted to put a lot of our attention on. We quietly acknowledge it and went about our day. Not much more we could do. It has never been a big deal to celebrate these kind of milestones like they are for others, but it was a bit poignant thinking about it now. Sort of a mushy look at one another and then moving right along...
Moving right along meant me getting ready to leave Dave and go back to Maryland after Hudson arrives on Saturday. I had moved my flight to Sunday so that Dave would have coverage and I could "hat" Hudson on what needed to be taken care of.
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Miscellaneous Stuff
Dave slept and slept after our trip out to see the house. I was a little concerned he would have trouble sleeping in the night, but he didn't. It was really good for him to be able to rest so thoroughly.
Our wonderful friend Mari sent Dave some of her killer cookies in the mail yesterday! YUM!!
My phone battery will barely hold a charge anymore, sigh, another thing to handle.
Got the Washer/Dryer ordered. That's done.
Today I need to boot Dave out of the guest room for a while so I can clean it up and get my stuff packed. It looks like a bomb went off in a rag factory (as my grandmother used to say!). I'm anxious to get home and take care of stuff, but I'm wanting to stay and keep Dave moving forward toward restored health. It is difficult, but we will get through and things are in place to keep Dave moving forward. A BIG part of that is all the wonderful good wishes and messages along with other support that those who are physically close enough to us can offer. Its amazing how folks will rally around and do what they can to lend a hand. I couldn't do this nearly as well without all the support. It touches me deeply.
Dave continued to be frustrated that I was leaving. We have these conversations and I think he understands and everything is set and then bam! These moments of mild hysteria are sometimes, how should I say it... inconvenient. I feel incredible stress and overwhelm at times. I'm just running on pure adrenaline. Don't give me anymore to think about, to talk about, and for god's sake - to do! Dave is having trouble focusing with the pain and the drugs. Then he has pockets and moments of overwhelming dread and fear and worry. Sometimes we are better at reading each other than other times. The onus is mostly on me to do this now. He's not really equipped at the moment to look beyond himself and help me. Every so often he will want a clarification on something that I thought was resolved and I have to fight my own confusion on that and restate everything, without anger or frustration or making him wrong, just state it again calmly and directly. Answer his questions, explain the sequence necessary. I don't think he really understands that I don't want to leave, but we need to keep everything moving so that I can be with him and help him in his journey to get well. I don't know what else to do or how else to BE.
Breathe... breathe...
Hiccups and the Thorazine Shuffle!
Oh god!
Dave has been having uncontrollable and violent hiccups. We think its tied in with him being so profoundly constipated. But we aren't totally sure, except that when he can have a bowel movement the hiccups seem to go away for a couple days. So we "think" its gas building up with no place to go, but what do we know? Dave has several things working against him. The Myeloma causes constipation, as do the narcotics and the Thalidomide he is on to beat back the Myeloma. Add to that, general inactivity and poor Dave is just like a salmon swimming upstream on this. He is already so annoyed with all the pills he has to take and now he needs to add things to help him go to the bathroom. He keeps wanting to treat it like its and "acute" condition vs. a "chronic" one.
This is where, as a caregiver, and a wife, I get tremendously frustrated and aggravated with Dave. I tell him and tell him and tell him, what is going on, how to address it, how to handle it, and he doesn't do it, does his own thing, and then gets constipated and the hiccups return and we go round and round and round. I finally call Marilyn G., MD, and tell her what's going on and how frustrated I am with all of it. She gets Dave on the phone and "explains", AGAIN, what's going on and why he needs to be proactive and continual in addressing this issue. It works for a couple of days and then he goes back to "hoping" he won't have this problem, and of course does, and so it goes.
After I left for Maryland, my dear friend Jann (who has since passed away, sniff, sniff), was out in California and was spending time with Dave and Hudson. She went to one of the appointments with him (did I mention, I have THE most AMAZING friends!) and Dave tells some lowly office person that he has these violent and uncontrollable hiccups. She gets on the computer and says, "Oh, no problem, we can prescribe Thorazine."
WHOA!!!!!!!!!!!!
THORAZINE!!!!!!!
Thank god Jann was there! She knew, as I knew, that Thorazine was introduced in the 1950's as the miracle anti-psychotic that was dubbed the "Chemical Lobotomy". Geezus! Jann, stepped up and said, "Dave, you absolutely cannot take that!" The poor girl behind the counter was way too young to know this information. She's just punching into the computer and its spitting out the "approved" solution. Jann was calm, but direct with Dave. Of course she called me right away and we were both AGHAST on the phone and I was soooooooo glad she was there at that moment! As I mentioned earlier, I was finding out a lot of things, after the fact, and I have no doubt, Dave would have filled that prescription having no idea what it was originally known for. It was helpful though in getting him to opt for the colace, sienna, warm prune juice, etc.
"Thorazine Shuffle" averted!
but the hiccups remain...
Eventually the hiccups would disappear, though issues with the constipation would continue and Dave's willingness to get ahead of it. So I don't know really, what was causing them. It could have been the Thalidomide. But again, they did disappear while still on the Thalidomide, so who knows with certainty what the cause was. We may have just gotten a better handle on the constipation and we were right all along...
Now do I really think had Dave taken thorazine he would have developed the "Thorazine Shuffle?" Was I simply freaking out about something I knew about this particular drug that was not appropriate? You know what? I don't care. I don't care if someone thinks I'm overreacting or not. It was a continuing EFFORT to educate Dave about health care, drugs, recovery, etc. His world and, arguably, mine, had been turned upside down. He had gone from no pills, to handfuls. He was scared, in pain, frustrated, uneducated, inexperienced, etc. I was 3,000 miles away and we had 27 years of marital baggage to plow through as we tried to deal with all of this.
The upshot of this was, and continued throughout, I felt that Dave needed to be very careful about HOW he was communicating these things to the medicos. If he tells them matter of factly so they know everything that's going on that's one thing. But if when he's telling them he is giving signals that he wants them to "fix it", man, they will, more pills, more prescriptions, more, more, MORE! As someone who has always worked for the simpler, alternative roots to things, this kind of approach is contrary to everything I think and believe. Why would you not take sienna, fibercon, and prune juice (ok I hate prune juice!) to proactively resolve the constipation and thus, the hiccups... but instead, tell the docs, and get a prescription like THORAZINE to handle it. I just can't think with that kind of rationale. And here is the other thing, in case you are wondering... the other stuff DID WORK! He just wouldn't stick with it. I would find every pill out of his box taken EXCEPT the sienna, fibercon, colace, etc. Then he would avoid answering my question about having a BM, and then whine about the hiccups, being constipated, etc. SCREAM! He's protesting, I get it. I really, really do. This is not fun. But I have issues too, and his noncompliance is beating me up and pushing me into a very unsympathetic, sarcastic attitude. (That marital baggage I was alluding too!) Or... is this simply the lessons I am to work on...
(Note: Some had expressed concerns about Dave taking stool softeners long term. I was told that your body can become dependent on them. I spoke to Dr. Marilyn G. about this and was told that is not the case with someone in a position like Dave where he has chemical reasons for the constipation. If he was constipated, but otherwise healthy, and was taking laxatives and softeners, then yes, that could become a problem. But when Dave got off the narcotics and the MM was better under control, he should be able to go back to normal on this... whew...)
There seemed to be a continuing struggle with the juxtaposition of the patient, the caregiver (aka, the wife), and the doctor! I'm not a doctor or a nurse. I struggle with Dave on my credibility and his willingness to take whatever is said by the docs/nurses as gospel. If it supports my view, fine, if it doesn't, then he is less likely to work with me on it. The docs/nurses, rightly stay focused on Dave, the patient. Its extremely frustrating. And yet, I can't lose my temper with him... he is very sick, its not OK for me to unleash my wifely wrath on him. Calm discussion and persuasion is the order of the day, but it is exhausting in terms of the emotional energy it drains from me.
I can't emphasize enough how incredibly valuable my friends have been through this process. Jann was one of several. I was able to fully disclose and unload my difficulties and find sanity in the storm - always with a solution, humor, direction, focus, and always renewed and resolved to keep moving forward and know, without any doubt, we would get through this. The trick was, could we get through it in one piece, undamaged, stronger, better...
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8 Temmuz 2012 Pazar
Mowing the lawn helps me feel alive. Who knew?
I mowed and trimmed our lawn yesterday afternoon. It was hot–almost 90 degrees. But that’s normal for late June along the north coast of Florida. Ironic, since I understand two thirds of the country is facing temps much higher–some record highs?
It takes me around an hour and a half to mow and trim. Not a big deal–except I’m still lack stamina following my SCT last summer. And I would have trouble doing much more than I did yesterday, even after resting several times along the way–and taking a bit more oxycodone and Tylenol, too.
I enjoy doing the lawn, helping Pattie around the home, taking care of the pool (I’m the cabana pool boy!) and washing dishes. Things most would consider tedious and a pain in the butt.
But for me, it reaffirms that I’m alive and able to live a near normal life.
Sore, hole-filled bones aren’t going to stop me! Nor are the nagging side effects from my ongoing consolidation chemotherapy.
It’s good to be alive! I just wanted to share that…
Feel good and keep smiling! Pat
Check-out my interview on CureTalk…
Priya Menon, Scientific Media Editor at Cure Talk, interviewed me last week and posted the Q/A on their TrialX site yesterday:
CureTalk Interview With Pat Killingsworth, Author And Multiple Myeloma Survivor
Click-on the headline link above to read my interview.
Cure Talk features a lot of multiple myeloma related information. I help them out by allowing them to run blog posts from my various sites from time to time.
CureTalk, is a cutting edge health care blog. Priya claims the site gets over one million hits a month. It attracts a national and international mix of patients, healthcare professionals, and small health-care related business owners looking for what is next.
CureTalk is the blog of TrialX, a website devoted to clinical trials. TrialX recently won an award from the National Cancer Institute for developing “Ask Dory,” an application that lets the user contact the trial site directly or email them through Dory - http://dory.trialx.com.
The internet is a truly amazing thing! Who knows where it will take us–or how it will change our lives–over the next few years. Guess I had better figure out a way to keep breathing so I can be around to see how it all turns-out!
Feel good and keep smiling! Pat
I almost forgot: My stem cell transplant was one year ago this week…
I turned the TV on yesterday morning and Wimbledon tennis was on. One of my favorite international stars was playing; Serbian Novak Djokovic.
I wouldn’t normally do that. Even though I was a tennis instructor and coach in a “past life,” I only watch parts of matches occasionally now. I no longer play–too high a risk of stopping suddenly and breaking something. And all of the bending and reaching and stretching simply isn’t comfortable for a guy with lots of holes in his bones. So the bottom line is I’m just not that interested anymore.
But last year was different. Last year I was stuck in an isolated room inside the BMT Unit at Moffitt Cancer Center.
I was pretty “out-of-it” the first couple weeks of July. But for some reason the young Serb caught my attention, and I made sure I tuned-in to watch whenever he was playing.
How could I forget something as important and toxic as that? Lots of nausea, diarrhea and mind-blowing fatigue–maybe I don’t want to remember!
But it was a new beginning. And even though it wasn’t as effective as I would have hoped, I did meet some pretty amazing people while I was there. I even wrote about my experience–and the experiences of dozens of other auto and allo transplant patients–in my second book, Stem Cell Transplants from a Patient’s Perspective.
I certainly haven’t forgotten about the lingering side effects associated with my transplant, because I still live with them everyday.
But I believe that milestones, anniversaries and birthdays should be acknowledged and celebrated. Especially by those of us who are living on borrowed time.
So HAPPY 1ST ANNIVERSARY/BIRTHDAY TO ME!
I think I will take a trip down memory lane and share of few of the highlights–and low-lights–from last year’s transplant over the next few days or so.
In the meantime, why not celebrate with me and take the day off! I will be visiting my local infusion center for my weekly Velcade sub-q injection. Then tonight I will be kicking-off my next 21 day Revlimid cycle. And don’t forget about the ten, 4 mg little green dex pills that I will be downing right before bedtime–all because the stem cell transplant I’m “celebrating” didn’t work.
Yep, no one ever said that it would be easy. But it doesn’t mean that you and I can’t celebrate life and love and watching another Wimbledon!
Feel good and keep smiling! Pat
Fun and helpful reader feedback…
I have readers practically everywhere in the world. I guess multiple myeloma doesn’t pay attention to political borders or geographic boundaries.
Check-out these wonderful pics that one of our Australian readers, Sandra, took on vacation and forwarded me a week or so ago:
He is the Director for Advocacy and Advanced Prostate Cancer Programs, Malecare Inc. H also founded a group called Men Fighting Cancer, Together. He is a survivor of a number of different types of cancer: recurrent prostate, phyroid, melanoma and renal. He is also a
speaker, advocate and educator.
Although he doesn’t have multiple myeloma, his insight and positive attitude was outstanding. You can follow his work by going to:
www.malecare.org – information and support about prostate cancer
http://health.groups.yahoo.
Joel’s a good guy and would love to hear from any of you, I’m sure.
I think that it’s a mistake to limit our cancer related experiences to those with the same type of cancer. Makes sense. But I find meeting and interacting with other cancer activists and survivors like Joel helps give me a better overall understanding–something that is easier for me because of my work
But you can do it, too! Simply broaden out your blog searches a bit. I think that this is especially important for carergivers.
And speaking of caregivers, don’t forget to check-out my Pat’s Place column about that vary topic in the Myeloma Beacon this yesterday. It’s a bit unusual, but the Beacon is very proprietary and protective with their information, making it almost impossible to link back to their content. When I do, the links show-up with lines through the links. They may work for a week or two anyway, but then show-up as broken.
So… simply copy and paste this web address into your browser in order to be assured that you can find my column:
http://www.myelomabeacon.com/headline/2012/07/05/pats-place-tips-for-patients-and-caregivers/
Or simply go to MyelomaBeacon.com at any time and you can access all of my columns there. I believe that I am approaching my 100th column–and never paid a dime. I’m not paid to write any of my blogs, and I also volunteer my time when I write my weekly blog for the IMF–and I’m more than happy to do it!
But everyone needs to pay some bills, right? So anytime you are looking for cancer related books, buy them in My Cancer Store. And most are discounted, too! Also, click-on ads you see here on my homepage from time to time. That, along with a few speaking and consulting fees help keep this blog, HelpWithCancer.org, MyelomaNews.com and CancerNews.US going.
Tomorrow I will feature a very special, belated memorial post about a young myeloma patient who recently lost her almost nine year battle fighting our cancer.
Until then, have a wonderful Friday! And don’t forget to feel good and keep smiling! Pat
A special tribute to Laura Wilson
I received this touching email a while back and began corresponding with Elizabeth Wilson about her beautiful daughter, Laura:
Hello Pat,
I have been subscribing to your blog and to your MM News for several years as our daughter Laura struggled with multiple myeloma. Sadly, science did not progress quickly enough to save her life and we lost her on June 9th. On the plus side, Laura’s willingness to have multiple sites biopsied for a genome study at Mayo Scottsdale uncovered two new mutations for mm which are resistant to standard therapies. Perhaps someone else will be helped.
Attached is Laura’s obituary and a photo.
I am finding it emotionally difficult to read the blog entries and would like to be unsubscribed, but please keep me on your Myeloma New for right now.
With warm regards and great sadness,
Liz Wilson
I can so understand how Liz feels! I often become concerned as many of us in the myeloma community tend to post–and are drawn to–inspirational stories of long term survivors and/or those who are doing well.
That’s why I like to run posts from time to time about those we have lost, too.
Here are excerpts from young Laura’s obituary from last month:
Laura Lenore Wilson
February 4, 1975-June 9, 2012
During the eight and a half years she lived with multiple myeloma, Laura became an “expert” on her illness, collaborated closely with her oncologist, and was a strong advocate in her care. Always hopeful and proactive, she raised over $175,000 in an effort to find a cure.
Laura could find humor in the darkest details of her illness on her blog www.cancerclique.com. Friends “gathered” here and created a strong community of supporters.
Everyone who knew Laura drew energy from her giving nature, strength, wit, tenacity and courage. As one friend says, “Laura made some of the best times in my life even better, the harder times easier, and the sad times funnier–a beautiful and brilliant friend.”
Born in San Jose, Laura spent her childhood growing up in San Jose, Germany and Japan. She attended Presentation High School and earned a B.S. in International Relations from Stanford University and a M.A. in Counseling Psychology from the University of San Francisco. Her home was in Sunnyvale.
Laura followed her passions, which included theater, television, and connecting with people. She had careers in public accounting, television production, educational theater outreach, corporate philanthropy, and design. Most recently, she became a marriage and family therapist.
She is survived by her parents Walter and Elizabeth Wilson of Los Altos Hills and her sister and brother-in-law Melissa Wilson and Erik Stuart of San Mateo, and her boyfriend Guillermo Alvarez of San Jose. Laura was a 6th generation Californian and a member of the pioneering Bubb family…
…Contributions to Laura’s memory may be made to The Community Health Awareness Council (CHAC), P,O, Box 335, Mountain View, CA 94041 (www.chacmv.org) or to Stanford University Office of Development, in Memory of Laura Wilson, Attention: Julia Hartung, 326 Galvez Street, Stanford CA 94305 (This donation will benefit Ram’s Head Theatrical Society.)
Laura’s death is a sad reminder that multiple myeloma is not only an “old people’s” cancer. I personally know a patient who was diagnosed at age 20. Someone else was telling me about a young teen they knew who was first diagnosed at age 16.
Laura was too young to die–especially this way. But I can tell she made the most of every minute while she was alive. I wish I could have met her.
And if you get a chance, scroll-back and check-out her blog. I visited the site before her condition took a turn for the worse and was very impressed! Here is a link to the post announcing her death. It shares some touching and intimate details about Laura’s last days. Did you write this, Liz?
Laura Died Today
This young lady was ahead of her time. She will be missed.
Thanks for getting this information to me, Liz, so more members of the multiple myeloma community can celebrate Laura’s life and mourn her loss at your side.
I know it’s hard, but try to feel good and keep smiling! Pat
7 Temmuz 2012 Cumartesi
weight loss breathing exercises
Weight Loss Breathing Technique for Cravings
Another weight loss breathing technique can quickly reduce the effects of cravings for just about anything; not only food but also alcohol, smoking cigarettes, sugar – whatever you feel a strong longing for but don’t wish to consume. The initial thing to undertake is spend 1-2 minutes doing the stress breathing technique. This assists loosen up your whole body so you are better able to focus instead of feeling tied up in knots together with the craving. Then, picture in your mind the item you are craving. See it in full detail, even imagine that you can smell it, if you can. While focusing on this item, inhale slowly through your nose to a count of 4, expanding your lungs fully. Pause for one second, and then forcefully exhale through your mouth while thinking the word, “RELEASE”. Imagine that you are blowing out your desire to have this item, expelling it from your body and letting go of it once and for all. Repeat as many times as necessary, but typically 3-4 times will totally counteract the craving.Weight Loss Breathing Technique for Stress
Stress is indisputably one of the largest issues you could possibly encounter as you improve your lifestyle habits and lose weight. Stress has the power to overpower you, depress you, and beat you down which means that your weight reduction goals no longer appear critical. Deep breathing can bring your stress level down almost instantly, keeping you in full control of your eating and exercise plan. Start by choosing a quiet place to be alone for a few minutes; the fewer distractions the better. Inhale slowly through your nose for the count of four, expanding your lungs entirely. Then breathe out slowly through your mouth for the count of 6. As you release the breath from your lungs, allow your entire muscles to become loose and limp. Repeat 4-5 times, breathing very slowly and that means you don’t hyperventilate. In almost no time you ought to feel as if a huge load was lifted off of you.Weight Loss Breathing Technique for Energy
At the time you feel sluggish and groggy, deep breathing is an excellent technique to energize yourself. Again, find a quiet place for you to focus, and inhale more quickly through your nose, filling your lungs entirely for the count of two. Then let out your breath more powerfully than you did when using the stress breathing exercise, blowing the air from your mouth to a count of 4. Pause for 3 seconds, then repeat 4-5 times more. Make certain you pause for a couple of seconds after each exhale since this forceful in-out breathing could make you dizzy if you do it too fast
properties and gayabano effectiveness
I remember receiving an e-mail that soursop or guyabano is tens of thousands more potent than chemotherapy. Having just lost a friend this year due to cancer, I looked at the title and trashed the copy dismissing it as another one of those incredulous claims.Then I met a biochemist from a reputable university who claims three personal encounters with the efficacy of the plant. She excitedly recounted to me — in between rounds of freshly roasted Bataan coffee from her plantation — that the latest case involved the local barangay captain who was diagnosed with cancer. My husband knows him. His family was advised to prepare for the worse as he was thought to have only six months to live. Waiting for the prospect of a costly surgery, the patient got depressed and was resigned that he will not survive this. Gina boosted his morale and gave the friendly advice of taking tea from the soursop bark and leaves.Apparently, the barangay captain did just that. He drank the soursop tea as his water for three months. He felt better and better and when he had another scan not a single tumor was seen. He was declared cancer-free!That, of course, became a celebrated miracle in this sleepy Bataan town. I am sure they are planting guyabano obsessively as more and more harvest the fruits, leaves and bark.Gina mentioned that the barangay captain decided to give it a try when she mentioned that her mother was diagnosed with cysts in the liver. Instead of letting her undergo surgery at her mid-60s she decided to just take the soursop tea and papaya fruit everyday instead. She claims to be healed.Another was the case of the nanny of her boss who was diagnosed with breast cancer. Not having the funds for the surgery and treatment, she decided to go back to the province. Gina and her peers told her to take soursop tea. Six years had passed, and she is still alive and well.If this is so true, why can’t more people benefit from it? Why don’t people know about it? According to Gina, a large pharmaceutical company in the US spent a lot of money for research on the soursop. They confirmed that it is a potent cancer cure and commissioned a group to formulate a drug that can clone the active ingredient of the soursop. She said this failed so the company — not having any means to patent their discovery — just shelved everything.Local viewsThe Philippine Herbal Medicine Organization shared some views on their website: “Studies are underway by leading medical institutes, universities and pharmaceutical companies of the healing properties of guyabano against cancers. Initial findings show that certain compounds and chemicals extracted from guyabano leaves, seeds, fruit and bark appear to kill cancer cells while leaving normal cells remain unaffected.”The information they shared should be enough for anyone to consider loving the fruit even if they are not cancer-stricken. The flesh of the fruit is high in carbohydrates and has considerable amounts of vitamins C, B1, B2, potassium and dietary fiber. We know the fruit as guyabano, but it is called graviola in Brazil and guanabana in Spain.The organization outlined several medicinal uses for its poultice (warmed paste from pounding the leaves) and decoction (leaves boiled in water) such as to kill bedbugs and head lice, to reduce fever, to heal skin abrasions, to alleviate rheumatism and other skin infections, to prevent scarring of wounds, and as a wet compress for swollen feet and other inflammations. They also noted that pulverizing the seeds mixed with soap and water is an effective spray against caterpillars, armyworms and leafhoppers. In the Netherlands, leaves of the soursop are placed inside pillows or on the mattress to induce sleep due to its sedative and tranquilizing properties.Guyabano.com
Iam not sure if this is the original source of the e-mails I got, but one was forwarded to me from this website. They claim that “the soursop or guyabano is the fruit from the graviola tree that is a miraculous natural cancer cell killer 10,000 times stronger than chemo.” They have a disclaimer that says none of the claims have been approved and that the website merely presents information, pertinent aspects of which I lifted are here:“Research shows that with extracts from this miraculous tree it now may be possible to attack cancer safely and effectively with an all-natural therapy that does not cause extreme nausea, weight loss and hair loss. Protect your immune system and avoid deadly infections. Feel stronger and healthier throughout the course of the treatment. Boost your energy and improve your outlook on life.“Extracts from the tree were shown to: Effectively target and kill malignant cells in 12 types of cancer, including colon, breast, prostate, lung and pancreatic cancer. The tree compounds proved to be up to 10,000 times stronger in slowing the growth of cancer cells than a commonly usedchemotherapeutic drug.“The compound extracted from the graviola tree selectively hunts down and kills only cancer cells. It does not harm healthy cells. Various parts of the graviola tree — including the bark, leaves, roots, fruit and fruit-seeds — have been used for centuries by medicine men and native Indians in South America to treat heart disease, asthma, liver problems and arthritis.“It turns out the drug company (that) invested nearly seven years trying to synthesize two of the graviola tree’s most powerful anti-cancer ingredients. If they could isolate and produce man-made clones of what makes the graviola so potent, they’d be able to patent it and make their money back. Alas, they hit a brick wall. The original simply could not be replicated. There was no way the company could protect its profits — or even make back the millions it poured into research.“The National Cancer Institute performed the first scientific research in 1976. The results showed that graviola’s “leaves and stems were found effective in attacking and destroying malignant cells. Inexplicably, the results were published in an internal report and never released to the public.“Since 1976, graviola has proven to be an immensely potent cancer killer in 20 independent laboratory tests, yet no double-blind clinicaltrials — the typical benchmark mainstream doctors and journals used to judge a treatment’s value — were ever initiated.“A study published in the Journal of Natural Products, following a recent study conducted at Catholic University of South Korea stated that one chemical in graviola was found to selectively kill colon cancer cells at 10,000 times the potency of the commonly usedchemotherapy drug. The most significant part of the Catholic University of South Korea report is that graviola was shown to selectively target the cancer cells, leaving healthy cells untouched.“A study at Purdue University recently found that leaves from the graviola tree killed cancer cells among six human cell lines and were especially effective against prostate, pancreatic and lung cancers.”Of course, I discovered out soon that this website sells guyabano supplements. But I guess, here in the Philippines where the blessed fruit abounds, you can just eat the fruit, drink the juice or make a tea from boiling the leaves and bark if you believe any of the claims.* * *
The Swap!
Well Hudson made it in from the east coast to take over the care of his father so I can leave the west coast and head back to close on the house, resign formally from my job (set a date), work out the details with my boss, pack the house (ARGH!), go to the going away party for Dave and I, and make the move (which should be sometime around mid to late July).
. . .
I am so very proud of our son. He was 22 years old and just finished his third year of college (out of five) and when I asked him if he could forgo the summer job hunting and come out and take care of his father instead, he said, "yeah, sure". I asked him how long it would take him to get his stuff out of the apt, in storage and so on and he said a few days. He pulled it all together in about 5 days.
A moment here to just talk about our children. I didn't know fully how they really felt about everything. I assumed (and hoped) that they were talking with each other. I know that at the time Montana felt very strongly that it would be OK. She felt this immediately. There was a calmness. Since I was able to tell her in person before I left, what was going on, it was very comforting for me to "feel" her energy as I recounted what had occurred up to that point. With Hudson it was a little more difficult because I had no choice but to tell him over the phone. Its not always easy to read people over the phone. On the surface however, he seemed concerned but confident that it would sort out. Later on in the saga, both children asked me what they could do. I told them:
"Live your life, do well in school, stay out of trouble, and try to handle your own problems as best you can."
It may not seem like much, but to me, it was HUGE. If I could focus all my energies on getting Dave stable and well, not knowing what was ahead of us really, except that it would be time consuming and fraught with hurdles - to not worry about the kids would free up a great deal of my energies. The last thing I wanted was for them to stop going to college, get depressed or whatever one does when hit with a trauma such as this. We were now 3,000 miles away from them on top of everything else!
They are both pretty resourceful, self sufficient kids. I raised them that way. I couldn't help it. I lost my father when I was just shy of 13. He rocked my world. He was my hero. When I was about 16 and coming out of the "fog" of losing him, I realized that he had taught me all I needed to know to live my life successfully. It was quite a moment. I still remember it very well, it was pivotal. Somehow I pulled myself together and began to really live at that point. When I had my children, I just very naturally taught them things very early in their life. It was not uncommon for adults to comment. When they were teenagers they would often complain to me about how so and so's mother does this or that for their kids! Oh well... later though, my son called me when he was in his second year of college and told me how his housemate was completely inept at taking care of himself. That his mother would come and get his laundry each week and take it home to wash, buy groceries and CLEAN HIS ROOM! I was incredulous of course, and I gently asked (as I couldn't tell yet if he was resentful or annoyed), "Do you want me to do your laundry or something for you?" He said no and then went on to concede that I had done a good job raising him to be self sufficient and that while at times he hated me for it, he realized how much better prepared he was for life. Sniff, sniff.
So now here we were, a family, at different season's of our lives, the children budding into young adults and negotiating their life with much less supervision from their parents, Dave and I on our own adventure as "empty nesters" - and we have this "thing" happen. How do we move forward? How do we keep going? What should continue as is and what should change? I have learned in my life that you keep moving forward. Small steps, big steps, it doesn't matter as long as you are indeed moving and it is forward. That is my stable datum if you will. So all my decisions were with that basic premise. It has served me well in the past and it has served me well through this.
I want to take this moment to thank my children, Hudson and Montana, for being there for their Dad and I, for doing so incredibly well in school and continuing to move forward in their lives when they weren't sure if they shouldn't do something else. I am incredibly proud of you and proud to be your mother. Everything I had hoped for you, I have received in spades... and everything from now on is gravy! Continue... Love, Mom
...and the beat goes on
"It is so good to have the office come to life again! It felt like a house with a clogged drain on holiday with a lot of visitors, when you were gone... " My wonderful boss' email me to me upon my return.
So I've been home now for about a week. Closed on the house, back to work, packing, strategizing, planning, checking in on Dave and Hudson and on and on. Overwhelm doesn't even seem descriptive enough to describe the pressure I feel at different points in the day. Sometimes, being at work, walking the dog, chatting with a friend is a respite from all that is occurring. Sometimes, it just adds to it all. I've noticed I'm sighing a lot. Its been hard for me to catch up with Dave and Hudson with the 3 hour time difference on a regular basis.
Hudson has been taking Dave to his radiation treatments to help reduce the lesions on his T8, ribs and shoulder and thus give him a bit of relief from the pain. He has no fractures in the ribs which is good. We aren't totally sure he has lesions there either though. We're still struggling with what to ask. Its all so new and difficult to figure out. Its amazing how different and new this all is. And now with me in Maryland I'm not there to ask the questions when things come up. I hear about it all AFTER the fact. Sometimes I lose it and get really frustrated. Poor Hudson, doesn't know what to ask, its not really his job. Dave doesn't know what to ask or sometimes even how to assimilate all the information he does get. This is a whole new experience for him. And not a fun one.
I took care of my mother, Chris Hudson, who had had 5 cancers over 12 years. Each one was a fairly straight forward until the last cancer which was in her liver and then there was nothing presented to us to resolve it that was worth undertaking. She made the decision not do anything as it would afford her some decent quality of life for the months she had left. It was very hard for me, and even harder for my sister, to know that she had made this choice. It was the right choice, but it was still hard. I remember lying in bed the night I knew she was "done" and crying myself to sleep. I woke up with the resolve that it was "her journey". My role was to help her to have whatever experience she determined was best for her. THE HARDEST question I had to ask her in the car on the way home was where she wanted to die. I couldn't quite get it out like that, not that direct. Funny how that is. When I was in a class in college for my humanities credit, "Death and Dying", there was chapter I remember vividly entitled "Death Has Become Pornographic". What it was alluding to was the difficulty we had as a society to discuss death. We give it names, like "passed away", "kicked the bucket", etc. That in the old days when death was more commonplace, we didn't hide it away like we do now. The pornographic analogy was that we don't discuss that either. We know its there, we know its a part of people's lives, but we simply don't have conversations about it. It is a taboo subject for many. Even "knowing" this, it was profoundly difficult to open this line of discussion with my mother without completely falling apart. But I was brave, and with tears trickling down my face as I was driving her home, I asked, "Mom? What do you want to do? I mean, where do you want to be... in the hospital, at your house, my house, hospice?" We had a very tentative and cautious, but open, conversation about it. She wanted to be with me, but she was worried about the children who were 11 & 13 at the time. Then she recounted a personal story that just floored me and that I never knew...
When she was about 5 or 6, her grandmother was dying. They all piled in the car and went to her house. Adults were milling around in and out of the grandmother's bedroom, waiting, keeping vigil. The grandmother dies, they get her body removed from the house by the funeral home and then they put my mother in the grandmother's bed, alone, turn out the light and they all go to bed! My mother had tears running down her face as she was, with great difficulty, telling me this incident in her very young life. I said, "Ohhhhh Mom! That's horrible! You must have been absolutely terrified and frightened!" She only nodded. Then again, with difficulty she expressed her concern for my children and not wanting them to have any kind of experience like that connected to her or to death. I was even more resolved now that she would be with me. "Mom, first of all they aren't that young and secondly, I would never allow them to have an experience like that, you know that right?" She nodded. "Then its settled, you will be with us." (In case you're wondering... my children had an unbelievably enriching experience caring for my mother. For them, now, its as natural as the air you breathe, to care for someone you love.)
Chris (circa mid 1960's)So my experience with her was a slow decline physically until she died. With Dave, it's one minute he's working, driving to and fro, taking business trips and so on - to WHAM! In the hospital, unable to move without great effort and pain, almost crippled beyond words. I have to help him up, help him put on his clothes, in and out of the bathroom, pretty much everything. With my mother, it was helping her to die, gracefully, painlessly and dignified. With Dave it's about SURVIVAL! Bringing him back from the brink instead of helping to go toward it. Its frightening to see him so profoundly impacted in an instant, much I guess like someone who has had a terrible accident or stroke. Its so abrupt and life changing, it sends you spinning.
Of course, now, I realize just how frightening all of this must have been for Dave. (I had a sense of it when it was occurring, but honestly, it was a luxury I didn't feel I could afford.) He can't get out of bed, he is in tremendous pain, he goes to the hospital by ambulance and he's told he has cancer. I'm sure right at that moment, he thought this is it, its all over, I'm a goner. I can totally appreciate how one could view it that way. My job became more about his mental game than the physical one. I knew he would get treatment, though I had no real idea what that would entail just yet. So for me it was, how do I get Dave from a posture of succumb to one of survive? How do I do this while being understanding and compassionate. How do I say, "COME ON BUCKO! GET WITH THE PROGRAM HERE!" in a soft, quiet, caring way. I'm thinking all of this and I'm torn between being angry AT him, scared FOR him and not even wanting to think about what this could all mean for me and our family. Our future, our lives... and feeling guilty for having ANY of these kinds of thoughts at all! The emotional pressure was incredibly profound.
The Scoop on Dan Blog - Taking a moment...
I'm pretty certain that I met Dan when Dave and I were in Little Rock to begin our tandem transplant. Dave was fairly uncommunicative in those early days and I distinctly remember talking to a bright, handsome fellow sitting across from us. His wife Susan wasn't there as I recall, in the infusion center at the time. He was from Denver, he had had a transplant a couple of years before and now he was in LR. I remember that I liked him a lot and he was very upbeat and a great pleasure for me to chat with at the time. Anyway, I finally got caught up on "his story" last night and this morning. What a journey he and his family have been on! Its always amazing to me how different we all are and yet how much we are all the same. Dan has two beautiful daughters who were in college at the time and are now done and doing well. We have our two doing the same, with Hudson graduating this May and heading to Orlando to work his post graduate internship at Epcot.
So back to Dan, and his rock, Susan. He is currently at MD Anderson getting ready to undergo a mini allo transplant. The "mini" is the latest in the allo transplant, which is using stem cells from a donor, in this case one of his brothers. Leukemia patients typically get the allo as they have no cells of their own that can be collected. The allo has a much higher morbidity rate (30%) which is why it is a bit of a last ditch effort. But in Dan's case, his brother is a 100% match for him, and its the new "mini", and he's at MD Anderson, and he is an incredibly optimistic, strong person, with a tremendous support network. So this morning, I'm just feeling a strong yearning to write about Dan and give him all the spiritual support I can muster to get him through this new treatment he is embarking on and all the positive affirmations that he will do incredibly well.
Allos are the only true cure potential MM patients have at the moment. That's not to say that all the other treatment options we all battle with to make decisions about aren't promising and don't offer good outcomes. But the allo, when used, and if successful is by far the best opportunity to put MM firmly behind you. The mini is an effort to do the allo and mitigate the higher overall morbidity rates (from 30 to 10%). It has become a promising future path for those not able to get into a more stable disease presentation.
My thoughts and prayers to Dan and his wonderful family over these next weeks. I'm picturing him on the slopes, swimming, and riding his bike in beautiful Denver for years to come.
GO DAN!
Whatever "journey" you are on in life, you will meet people along the way that however brief the contact, who touch you, inspire you, make you laugh, give you hope, strengthen you... In the journey of Myeloma, which I am more familiar with, but I imagine it is true in other situations, you know that you are going to lose new friends along the way. You get attached and you grieve their loss, or you celebrate their triumph! Either way, was it worth it? I say, absolutely! You can't help but share their joys and their pains, as they do yours. That "look", of knowing its a good day or a rough day. The optimism of a good test result, or meeting with the doctor, the arrival of a loved one while you are far from home. Sharing the joys of someone being "sprung" and getting to go home! We all have a "story", and in them you see bits of your own and with that, there is understanding, hysterical laughter, tears, and most of all HOPE.