my diagnosis of advanced cancer: how to help my kids

Parent Cafe
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<p>sunrise, hang in there! It was very smart of your doc to send you to the ER. Good call. It would be a shame if your body that just kicked major cancer’s arse fell victim to a bunch of bloodsucking bacteria. I hope the ER docs are doing a fast BC test to rule out drug resistant staph and are putting you on the right meds. I just knocked on every leg of my dining table for you. I would have knocked on the top, too, but it is granite, not wood, and granite is not mentioned in my handbook of superstitions as being helpful. :slight_smile: </p>

<p>You are in the right hands and will be fine. Just make sure that you wash your hands religiously and ask everyone who comes to touch you whether they washed their hands. I’m not joking here. Praying for the outcome: Sunrise 1, bugs 0.</p>

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<p>When I was in the hospital (after I died from a major heart attack), I charged the nurses and aides a dime for every look, and every procedure, to donate to my favorite charity (“Dime-a-Brick” - [url=&lt;a href=“http://www.friendsoflafti.org%5DHome%5B/url”&gt;http://www.friendsoflafti.org]Home[/url</a>] ). Perhaps surprisngly, they all paid. Almost never saw a doc - it was a feminist revolutionary commune. </p>

<p>I used to joke with my wife that the real reason they put in her chemo port was so that I could pour in the grain alcohol…</p>

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<p>Enjoyed your war stories, sunrise! May you be totally restored to health soon!</p>

<p>My BP and resting heart rate are also quite low. Once when recovering from very minor surgery I remember the alarms going off constantly. My H was there next to me and I was fine, but the system thought I was crashing…</p>

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<p>sunrise - I hope the antibiotics kick in real fast and you are sprung from the hospital jail before you know it. </p>

<p>(Sorry, mini, all this time I thought you are are a woman.)</p>

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<p>I too thought mini was a woman all this time. well, maybe she still is. Some women have wives, you know, if you know what I mean. I hope this is not misunderstood: I am a supporter of loving unions of all varieties. I once sent out party invitation notes with the following phrase “you and your bi-pedal significant other are welcome”</p>

<p>So, last night, my BP was again below 90. So, this new nurse’s aid came up with an even more exciting solution to this problem. After three readings that all came just below 90, she said “OK, we need to draw your blood anyway. So let’s do that now, and measure your BP again” I have been having vein problems all evening yesterday when they tried to reinsert the IV needle (had been poked more than 10 times before they finally succeeded), so I was not surprised that this aid also had a problem. It took three pokes for her to draw the blood needed for testing this morning.</p>

<p>Sure enough, when she measured the BP again, it was 94, so everybody was happy. All this happened at 3:30 AM. </p>

<p>(BTW: this vein problem is a real mystery. I have such good veins and they were all spared of the chemo abuse. Never in my life medical staff had any problem with my veins… I guess there is first time for everything)</p>

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<p>Sunriseeast, Ask your physician today to change the parameters for the “call if BP<90” order to “call if BP<85”. These standing orders can be modified as needed for individual situations.</p>

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<p>You can see us at [Skylark</a> Sings ~ Welcome to Skylark Sings](<a href=“http://www.skylarksings.com%5DSkylark”>http://www.skylarksings.com)</p>

628

<p>What an ordeal, sunrise, and just when you thought life would become easier. I am rooting for you against the nasty bugs!</p>

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<p>sunrise - Sorry to hear you’re in the hospital. I hope the anitbiotics work quickly and they free you from hospital jail soon! </p>

<p>mini - You look like you have a fun family!</p>

630

<p>Aw, sunrise, as a former nurse who worked night shift I apologize for all the 'round the clock aggravations. Hope you’re released soon.</p>

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<p>sunrise, here’s an idea for you. I also have very low BP. Once when I was trying to donate blood at the Red Cross, my pressure was too low for them to take my blood. The nurse suggested that I think racy thoughts. Sure enough, that worked and I was able to donate without a problem.</p>

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<p>Free at last, free at last. Home now.</p>

<p>Tomorrow, I take PET scan. Am a bit nervous, because the results will tell me whether I am done with the treatment or not.</p>

<p>My H: Oh, don’t worry. You have always aced any test!</p>

<p>Yeah, I wish it was something like all other tests I took: you study. you master the subject matter, and you ace the test. </p>

<p>well, we shall see. good night.</p>

<p>(thanks for all the wonderful advice about the low BP. I will remember this when/if a similar situation arises).</p>

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<p>sunrise - Keeping my fingers crossed that you get an “A” on your test today!!!</p>

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<p>Thinking of you today, Sunrise. I’m visualizing a wonderfully unimpressive PET scan.</p>

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<p>Have a great day, sunrise! :slight_smile: We’re thinking of you during your test.</p>

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<p>Fingers crossed…</p>

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<p>Sunrise - I missed you and was worried! Thank goodness you home again. I hope today goes well. You have a community of support here.</p>

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<p>I choose to think that sunrise is celebrating today.</p>

<p>(as a low BP person, I will post my odd, LBP, stories at another time.)</p>

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<p>Hoping and praying. </p>

<p>I, too, run a very low BP. After a teen ran a red light and hit me broadside, I was being loaded into the ambulance for a trip to the ER for evaluation for neck and head pain. I had a HUGE hematoma on my forehead, but otherwise was OK. I was strapped to one of those back boards (the most uncomfortable 20-30 min of my life). The paramedic had a funny look on his face during initial evaluation. As a physician I knew why. I asked what my BP was, he said 80/50. I smiled and said that was normal for me. He said that with that BP I needed to be designated as major trauma and flown to a trauma ER. There are no trauma ER’s in my county. I DID NOT NEED TO BE TRAUMA-HAWKED TO THE NEXT COUNTY. I had him repeat it. It was marginally better. I reviewed all of my findings with him, and convinced him it was safe for me to go by ground to my local hospital. My Xrays were clear, and while I looked like someone might have beat me up… I was fine. Over the course of the next few weeks my patients either did not ask (and I was quick to explain the MVA) or they asked me what plastic surgery I had had. I WISH.</p>

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<p>to all you dear cyber friends,</p>

<p>you have no idea how much I appreciate all of your gentle words and good will. I REALLY DO, I DO. So, even if I don’t respond to all of your individual post, please know that.</p>

<p>So I got the scan done today. Now I wait. </p>

<p>Meanwhile, I have been doing a lot of research to decide which vaccine clinical trial I should join IF I get into remission. Very fascinating stuff. I picked the vaccine trial because this is the most unexplored (read: highest potential breakthrough benefit) field in cancer management, and represents a new way of thinking. the current mode of thinking is running out of options (a drug that kills cancer cells). The immunotherapy is an idea based on helping the body to become a more effective agent in dealing with this cancer. </p>

<p>It’s like sending drones to kill terrorist and killing innocent civilians too (the dominant chemo treatment option) vs. building up/enabling a local government to deal with the local terrorists themselves (immunotherapy) </p>

<p>Emotionally, I am a bit drained today. The last thing I want to be is a self absorbed patient who has nothing to talk about other than her illness, and who has lost her ability to see the whole situation from her loved ones’ perspective. I am upbeat and optimistic most of the time because I am genuinely feeling that way, but there are times when the air of self sufficient optimism is really a result of a brute force will power and a grim determination not to be the self-absorbed, self pitying patient that reminds everybody of their own mortality with doom and gloom. And, this takes a lot of emotional energy to maintain. </p>

<p>Even though I made jokes about the extended weekend stay at my “favorite spa” and had a great deal of fun laughing about all the funny things like my low blood pressure induced episodes, and a total lack of privacy, etc, back in my head, I know that what the infectious disease specialist told me (I should be much sicker and I was fortunate that it did not turn septic) is correct, and I am vulnerable to a lot of things now that I did not have to worry about 6 month ago. </p>

<p>That, combined with the scan and what the results may imply took their toll on me. It’s NOT given at all that I will be able to declare victory. If further treatment is needed, it could go on for the whole summer, and god knows what else.</p>

<p>For the PET scan, they injected radioactive stuff, and I was sitting there for 45 minutes (as prescribed) for the stuff to work through the body, and I simply started to cry, just like that. It was a good thing that I was alone. I so abhor presenting myself as this whinny, wimpy, morose, and lugubrious sickly thing. I don’t even want to see myself like this let alone to have people that I love witness me that way. I have already felt that I would rather be respected than loved. You can get love for all the twisted reasons, but RESPECT, you have to earn. So, you see, the last thing I need when I am feeling down and weak is pity from those around me. </p>

<p>Even now, just writing it and posting it makes me cringe a bit. There are a lot of people who are REALLY in a bad shape, you know. What am I complaining about??? Amidst all this, I still was dealt a winning hand. </p>

<p>I fully expect to bounce back tomorrow morning. I always do. Meanwhile, I have a lot more research to do on these vaccine trials: because, I am an optimist, and an optimist plans for steps for the sunny day scenario.</p>