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<p>Rudy Tomjanovich</p>
<p>and another (one who lives in Paradise)</p>
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<p>[Relay</a> lights the way - Paradise Post](<a href=“http://www.paradisepost.com/ci_9537503]Relay”>http://www.paradisepost.com/ci_9537503)</p>
<p>Thank you for this, Epistrophy and ADad. </p>
<p>Northeastmom, thank you for your post, that helps a lot right now. I seem to have gotten myself into a sort of a drug treadmill that is going nowhere - Calmom warned me about this very early in the thread, about taking one medicine to counteract the side effects of some other medicine. That’s been happening to me; unfortunately, due to a LOT of coughing and icky production, I have been getting nauseated and losing it, plus the coughing is hurting my back more, so there’s a pain pill and a nausea pill, but that results in sleepiness, and so…it’s been a real mess, and, my oncologist’s solution is - can you guess - yet another medicine. Hard to blame him; if your only tool is a hammer then every problem is a nail? </p>
<p>But I decided, um, no, four bottles of medicine in my possession is more than enough, so, I decided to stop ALL the medication. This means that I have been walking around in a state of distractive pain, nausea, and shortness of breath, but, incrementally, one day at a time, am working my way out of it.</p>
<p>Haven’t missed a day of work yet, and my colleagues all tell me I sound perfectly “normal” to them. I think that resting on weekends is going to have to be my new plan; typically I have been running around shopping, going to movies etc. on weekends but it now seems that it is more important that I rest. </p>
<p>We did call the Patient Advocate Foundation to offer help; with regards to the non-financial side of offering assistance, they are confused as to what to do with us - it’s not in their script to receive help it seems, only to respond to inbound requests for help. So we are now waiting for a couple of return phone calls.</p>
<p>Based on what I am going through right now, I am more convinced than ever before how important it is to have caregivers, and to have those caregivers supported. Even while I was typing this I received a call from one of mine, what can they do to ensure I am eating enough? What can they go purchase for me, right now, that I will be able to eat? </p>
<p>Oh, I purchased my first Mac Saturday - this replaces my personal laptop that was ruined in the flood - my daughter set it up for me and so it’s ready to go, but, I have been too ill to use it…so it is sitting on my bed, waiting for me to come home and play with it…I am looking forward to it… :)</p>
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Wow. You stopped all the medicine?! That has to be really hard. I guess it doesn’t hurt to try going without it, though. At least it might help you identify what is really bothering you the most, so that maybe you can address just that one thing for awhile.</p>
<p>Thanks for the update, LTS. Your plan to rest on the weekend is a good one - even God took a day off.</p>
<p>That’s great that you are still looking for ways to help, even when feeling miserable. I think that commitment to others, and the desire to keep on giving and producing, is the most powerful drug you have.</p>
<p>I’m curious - Did you ever clue in your co-workers about your illness? I remember that for a long time you told no one, then you told a few key people. Is it general knowledge now?</p>
<p>LTS, In terms of your coughing, have you brought this up with your onc? Do you have fluid built up in your lung? If so, that can be dealt with, Best,</p>
<p>I know you’ve probably been getting tons of advice, but this might help when you can’t keep anything down. It works with teenagers and kids and it’s worth a try. Orange popsicles. The cold helps settle your stomach, and you can use the sugar. I don’t know why orange, but that’s what works when nothing else will stay down.</p>
<p>LTS-
I was thinking about you when we recently visited my h’s cousin and his wife. She is a 7 yr survivor of stage 3B invasive ductal carcinoma, and her H is a 5+ year (maybe more, I cant recall when he was diagnosed) survivor of bladder cancer. He recently underwent a kidney transplant (donated by their older daughter) and flew back home to attend the HS graduation of their developmentally delayed younger daughter. They are, like you, extremely positive people- always upbeat, determined and live life to the fullest. Never hear them complain- ever. She has a wonderful website and blog which I will send you privately, so as to avoid blasting any more of their personal info here. She’s also written a book about her experiences, and relishes in the opportunity to share stories and support. It was wonderful to visit with them recently. I haven’t laughed that hard in a long time. I truly believe that attitude is largely responsible fro response to treatment. Keep up yours!</p>
<p>Timely, well, yes and no, I think the issue is that the medicine causes some of the problems. For example pain medication causes an upset stomach. Coughing causes pain (disc situation). Cough medicine causes sleepiness, which, I could offset with steroids, if I wanted to, but, I don’t. </p>
<p>Binx, no, we have not told anyone. Only people who legally need to know, know - and they have been awesome. I am really, really, lucky to have such productive, enjoyable work; I am also very lucky to have just great support. Just the issue that there are people who are relentlessly concerned about what to feed me, what I am eating, what can we go to the store and buy for you tonight, that’s simply a godsend. </p>
<p>Padad, my oncologist is concerned - he does not think it’s fluid; he think’s it’s the body’s protecting itself, and could also be cancer breaking up. In any event he is sending me to the radiation oncologist tomorrow morning; he wants to see if at least the symptoms can be treated, so he has time to work with this new chemotherapy regime. So we will see what they decide to do tomorrow. The great news is, my counts came back strong, so, there will be no delay of treatment. </p>
<p>Threekids, I will happily accept any advice as to what to be able to keep down. My daughter bought me some Italian ice; that helps. So far today I have been able to hold onto crackers, an apple, Boost, and lots of water - and this is an improvement over yesterday. I also drink a bottle of Boost two or three times during the night, when I wake up to use the bathroom. Just trying to give my body some fuel. The problem isn’t nausea; it’s coughing so violently that gagging happens…I do have a prescription cough suppressant, but, it contains codeine, which really upsets my stomach, but, I don’t believe in suppressing coughs anyway - if one’s body is wanting to cough, it makes sense to me to let the coughing happen, in spite of the yucky collateral effects…</p>
<p>This wouldn’t be an issue probably if I stayed home all day; it seems to be triggered when I walk around a lot…</p>
<p>Apologies in advance for the gross post…</p>
<p>Jym626, cross-post, thank you for thinking of me; I would be delighted to read the blog. Positive attitudes are infectious and I am always pleased and happy to read of the successes of others in defeating this disease…</p>
<p>LTS:</p>
<p>You are brave! One thing I learned when I had surgery was not to be stoic. My surgeon impressed on me the need to deal with the pain when it was just beginning, rather than let it develop full force, in which case I would need to increase the dosage of pain-killer and might not overcome it. It took a while to sink in as I’d been brought up to grin and bear it.
I’m recovering from a cold. I had to drop out of a meeting because I’d lost my voice. I’m sick of sucking on cough drops. I’ve also found that if I am upright, I cough less. Which means I also sleep less. I don’t know how you manage a full day’s work! Keep down your food and keep up your spirits!</p>
<p>EDIT: Cross-posted with you.</p>
<p>LTS, good to hear that you are seeing tomorroe your radiation oncologist on your cough. Keep well.</p>
<p>LTS, something that has worked well for me is ginger tea with sugar. The combination of the hot tea and the sweetness of the sugar definitely helped with nausea. I was also able to buy hard ginger candy at an Oriental foods market; that was also a big help when tea wasn’t always convenient. This may have been suggested earlier, I don’t recall. </p>
<p>I wish you weren’t feeling so miserable but perhaps stopping the meds will help. Not many people could do that.</p>
<p>LTS, has anyone addressed with you the possibility of doing some stretches to aid the back pain? If it’s disc related, there is a chance you could alleviate some of the pain by trying one or more of the following (I speak from experience, but go GENTLY, please, as we don’t want you worsening anything. If it hurts, STOP!!):
-Lay on the floor on your back, and bend your knees to your chest. If no pain results, try letting gravity pull your legs down to one side and then your arms to the other. You will be sort of twisting/stretching your spine. Go slowly and STOP if anything hurts!</p>
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<li>Try lying on the floor on your belly and gently push up with your arms, arching your back. This results in flexing your spine gently the other direction. </li>
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<p>-When lying in bed, it helps me to lie on one side and keep the “bottom” leg relatively straight, while putting the “top” bent leg on a pillow that is right in front of me. </p>
<p>I know everyone is different and your back/disc problems may not be at all like mine were. Do you know any good (I mean REALLY good) chiropractors? I have never personally visited one, but I have a dear friend who swears by hers.</p>
<p>Best to you as always!!!</p>
<p>Also for coughing, if you’re interested (I know you’re being bombarded, but I also know that it’s hard to offer anything other than suggestions and encouragement over the internet!): throat coat. It’s an herbal tea that you can find at Whole Foods, and it’s got licorice root and slippery elm (I think…?) and a bunch of other delightful hippie herbs in it (so you might want to run it by your doc before drinking it… herbal remedies aren’t reg’d by the FDA but that doesn’t mean they can’t interact with prescriptions). I get sinus infections and three-week-bouts of post-nasal drip with some pretty intense coughing every few months, and I tried all sorts of awful stuff and horrible prescriptions that made my stomach really upset until a singer recommended throat coat. The licorice root really quiets the coughing and actually helps sooth my stomach, a bit, too.</p>
<p>Keeping you in my thoughts and prayers.</p>
<p>Ugh, ice cold drinks, and italian ice and posicles, increase coughing. Shoot, I thought it could help but not if it makes you cough more. </p>
<p>I wish I could send you chicken soup. Isn’t it amazing how you realize who your friends really are? You’ll find some shy away during this time, but most will stay and show you what friendship really means.</p>
<p>LTS- I have had that kind of wretched cough- you cough so hard you retch 
If it is unprodcutive, or if you just need a rest form it, ask about a medication known as Tussionex; I had it in the 1980s and it suppressed the cough without the nausea and sleepiness you get with codeine based cough meds. I know it was 20 years ago, but sometimes the oldies work and they may have some new derivative that is even better. For pain without the affect of narcotics try Toridol. I had serious chronic pain issues in the 1980s/90s with the inability to tolerate the heavy narcotics. They can find you something that works better for you if they try- I know you can get them to try harder ;)</p>
<p>Just be careful when you stop pain meds. I knew a cancer patient who stopped pain meds one day while feeling better and had a seizure from the withdrawal. Some meds have to be weaned off of carefully.</p>
<p>I guess it’s obvious, but we love you! Good night.</p>
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Keep choosing the best, LTS!</p>
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<p>–Admiral David Farragut</p>