my diagnosis of advanced cancer: how to help my kids

Parent Cafe
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<p>wish you the best! </p>

<p>there are so many real issues in this world. i just think it’s so exasperating how people will debate to death whether one college is better than the next, especially when they’re both ranked about the same. it’s just so stupid. honestly, i’d rather be happy at a top 50 college than unhappy and suicidal at harvard. easily. any day of the week. i know this was off topic but i’ve been feeling this way for a while. i used to care about rankings a lot too, but now i’m over it. there are more important and pressing things to worry about in the world</p>

<p>anyway, good luck once again.</p>

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<p>sunrise - I was very happy when I checked this morning and saw that you posted. I am among those who worry if we haven’t heard from you in a while. Thanks for stopping by and sharing your story. I always enjoy your writing and your optimism. I am glad to hear that you and your family are doing well. Sending continued good wishes your way!</p>

603

<p>good morning, sunrise. :slight_smile: Thank you for checking in and sharing your update. We’ve missed you.</p>

604

<p>Sunrise, I’m so glad you’re doing well.</p>

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<p>sunrise-I am also delighted to hear from you again and glad that you seem to be doing so well. Please don’t think that we insist on such lengthy, eloquent posts frequently, although you have set quite a standard for yourself, “primate messages” notwithstanding. ;)</p>

<p>You are entitled to be “lazy” in this regard and only post when you really feel like it. Now that you have some contacts established, allow them to check in for you periodically. Continuing best wishes!</p>

606

<p>calmom, wis75, countingdown, and dougbetsy</p>

<p>as per calmom’s suggestion, I sent you PM with contact email address off CC.</p>

<p>Happy mother’s day to all of us…</p>

607

<p>Happy mother’s day, sunriseeast, and everyone!</p>

608

<p>Happy Mother’s Day, sunrise!! Enjoy!</p>

609

<p>Happy Mother’s Day Sunrise!</p>

610

<p>this for for those of you who are interested in details.</p>

<hr>

<p>My last chemo infusion was last Friday. According to the original game plan, the scan is due in three weeks to be followed by a post chemo consultation. </p>

<p>I requested a consultation with Dr yesterday to explore the option of maintaining the treatment while I am waiting for the scan results. My logic was, I started this whole journey with the worst diagnosis with the most aggressive kind of cancer, with a sub optimal surgery result leaving a rather sizable tumor behind which did not shrink much last time we checked (mid chemo). The betting man in me tells me that I should err on the side of overdoing it rather than under doing it. If the scan three weeks down the road reveals that I still need more treatment, I will not have given my cancer a nice vacation by continuing with another 3 weeks of chemo. </p>

<p>He strongly recommended against it. He said, there is no evidence that chemo beyond 6 cycles (18 weeks) have meaningful marginal advantage, and if it failed to get rid of everything, one more cycle (of three weeks) won’t do much more. Meanwhile, even though I may not be experiencing overt side effects, he does not want to stress the bone marrow beyond what’s necessary: with too much chemo, bone marrow gives out, and eventually stops responding to shots designed to boost white blood counts (this effect can be permanent) so that you can stay on the treatment plan. So, I guess I should protect my bone marrow in case I need further treatment in the future. Statistically speaking, the recurrence rate for patients with my diagnosis is close to 100% within five years. So as much as I am optimistic, I should also hedge my bets and preserve as much vital resource as I can.</p>

<p>So, no more treatment – for now.</p>

<p>However, I requested that we do PET scan ASAP rather than wait three weeks. If I need further treatment, I don’t want to give my cancer any nice long break. If I were to go into remission, the scan should be already clear: it won’ be false positive now that would have been completely clear in two weeks. </p>

<p>He agreed. Also, originally, he ordered CT scan only, but I also talked him into prescribing combined CT/PET scan so that in case the solid mass is still there, we can get much better idea whether it’s active cancer or not. That said, even PET scan has false negative, so we will never know for sure. (CT scan just shows the mass. it does not what it is: cancerous or not. PET lights up if there is unusual metabolic activity - mostly caused by cancer, but other things can cause that too). So, here are potential scenarios when the scan results come out.</p>

<p>(1) CT scan show no more tumor, and PET scan does not light up (with cancer): I am officially in remission. I now join the civilian population. Instead of being a cancer patient, I become a mental patient, perpetually paranoid about every single odd sensation and wondering whether this is a sign of recurrence or not.</p>

<p>(2) CT scan still shows the mass. PET scan is negative. Even though the odds are good that the mass is no long an active cancer tumor, the question still lingers (there are false negative PET scan results too). If the mass is now easily accessible via needle biopsy, he may do that and confirm once and for all, whether it’s cancerous or not.</p>

<p>(3) CT scan shows the mass. PET scan is also positive (lights up). This does not necessarily mean it’s cancer (PET scan is a false positive). If needle biopsy is possible, Dr. S will do that. If it’s not cancer, I go back to scenario (1) above. If it’s cancer, now we have further choices.</p>

<p>a. If it’s operable now (before last December, it was not operable). So, we do surgery. It may involve bowel resection. It could be a major surgery. Do I get a discount as a repeat customer?</p>

<p>b. We do radiation. It’s daily entertainment for 4-7 weeks. I hear it’s a lot of fun. I finally get to experience the full repertoire of cancer arsenals: cutting & sewing, poisoning and now burning. </p>

<p>(4) CT scan shows now not only the previous mass, but something else – disease progression. This is the worst scenario. If this happens, we start a fun game of treasure hunt – most powerful and effective combination of drugs are no longer working (some cancers become resistant to the chemo drugs), so we start a random search of a new combination of drugs that might work and try them and see if they work, if not, repeat. I will finally know what it feels like to be a woman with a very odd body shape who can’t find the right outfit no matter what she tries on in a fashionable boutique. </p>

<p>I think the odds are best for the scenario (1) or (2) (non cancerous mass): my cancer marker has come down again and now well within a normal range. I don’t think scenario (4) is likely at all, though I can never be certain. </p>

<p>No matter what happens, I am prepared for all possibilities, and I will solider on. I have run these scenarios so many times in my head with all contingencies silently articulated they do not scare me anymore. Even the bad scenarios lost their frightening edge as I played them repeatedly as if they were business case simulation studies. There is something to be said about “objectifying” one’s situation.</p>

<p>Hey, I already crossed a major mile stone: completion of the pretty harsh chemo regimen without any side effects (other than hair falling out and white blood count tanking). I have already beaten the odds with a wide margin. This has to mean something for me going forward. If I do get into remission now, my prognosis should improve even further. With my diagnosis, getting into remission so easily with just a standard front line therapy is not a given AT ALL – many women don’t achieve the remission status so handily with my kind of diagnosis.</p>

<p>So, this is it for now. I will let you know again when the PET scan results are out (next week).</p>

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<p>Thank you, sunriseeast for letting your virtual support system know what is going on! We will continue to cheer you on.</p>

<p>I relate strongly to your rational approach. Though I have not confronted a situation just like yours, I tend to drive family and friends crazy because I do not respond emotionally to intense or demanding situations. I become calm, strategic, and irritatingly logical. I may fall apart briefly when it is all over, but not until then.</p>

<p>So carry on in your own best way. I will continue to think of you daily and to send positive thoughts.</p>

<p>~mafool</p>

612

<p>Thanks for sharing this update. We are all pulling for #1!</p>

613

<p>Mafool & sunrise, I agree, objectifying the possibilities gives you the ability to address it rationally and takes some of the mysterious power away from the words. I do this with any tough thing in life, analyze and make a list as to how I will proceed.</p>

<p>We all enjoy hearing your unique perspective and send positive thoughts and wish you the best of luck for the easiest recovery. So far, so good.</p>

614

<p>Thanks for the update. I join Hanna in pulling for #1. I’d much rather see you as a mental patient than a cancer patient. ;)</p>

615

<p>well, dougbetsy,</p>

<p>the problem is, there are people who think I was mental patient even before the cancer diagnosis, like my husband to begin with :)</p>

616

<p>something on the lighter side.</p>

<p>My hair did not all fall out. My eye brows are mostly gone, but a few eye lashes are gallantly still hanging on.</p>

<p>I shaved my head 4 weeks into the treatment. Not clean shaven. Left about quarter of an inch of stump. Remaining stump thinned out considerably, but about half is still there. Funny enough, about a half of that remaining hair grew while I was on the treatment. So, now, here and there, I have two inches long hair strands.</p>

<p>At the age of 51, my hair was still pretty dark, but occasionally there were white hair strands, and I used to pull them out.</p>

<p>The other day, I was pulling out a couple of white strands of hair that grew while on chemo. My husband was laughing hysterically watching me do that. </p>

<p>I turned, and said “don’t laugh. this attitude and this optimism are exactly what will allow me to be at your bed side to comfort you when your time comes”</p>

<p>When we got married, this was the only promise I made: I was so sure then and till 6 months ago, that this is one promise I will never default on… I have to admit that these days there are days when doubts creep into my mind, but the original plan is still a plan of record… I hope I won’t have to come up with a plan B on this.</p>

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<p>In case you haven’t realized it by now, neither cancer nor chemotherapy cure mental cases- you’re stuck with who you are. Enjoy the spring.</p>

618

<p>I don’t get two for one deal? You know, “poison your body with chemo drug for cancer, and cure your insanity too” kind of a deal…</p>

619

<p>sunriseeast: I just read your “orchids and vegetables” post, and that is an amazing piece of writing. Please print that post out and put a copy in a safe place for each of your sons and your H too. What a wonderful philosophy you have.</p>

620

<p>My last chemo was May 6. I successfully finished 18 straight weeks of weekly chemo without any side effects to speak of. However, the first weekend in months without freshly administered, deadly toxins running through my system was not what it was cracked out to be.</p>

<p>I landed in ER on Saturday and have been jailed in the hospital ever since. Not sure whether they will let me go home tomorrow or whether they will keep me till Wed.</p>

<p>Oh, no. Nothing catastrophic. I developed infection around the catheter and port inserted near the collar bone for eazy administration of the chemo drugs. The idea is to create a direct express way to a major artery and avoid burning veins with caustic drugs.</p>

<p>I thought I was giving a “courtesy call” to my oncologist to let him know that perhaps he should write an antibiotics prescription for me on Monday since the whole area feels hot, inflamed and very tender to the touch. Instead, he sent me to ER straight, and there I was lectured by the infectious disease specialist that any infection near the catheter with a direct access to the major artery so close to hear is a BIG DEAL. She said, you could and should be a lot sicker and you are fortunate that it did not turn septic. </p>

<p>So, while they are waiting to see the results of culture analysis of the blood samples from various places and removed my port and catheter, I am stuck here, because unless they know for sure that they do not need to administer specialized antibiotics for a rare strain of bacteria, they are not going to release me. </p>

<p>Anyway, the point is not this medical saga, but some really interesting and funny things that happened. Those of you have had a good fortune to stay at a hospital for a few days know it’s virtually impossible to have a good night’s sleep since every other hour or so, somebody comes in and wakes you up: blood pressure, temperature, changing IVs, etc.</p>

<p>My blood pressure runs pretty low to begin with, and when they measure it in the middle of the night when I am resting, it’s even lower. Turns out, if it is below 90, it activates the whole chain of actions in the nurse station and doctors must be notified: heck of a lot of commotion and more work for everybody in the middle of the night. So, this nurses aid was trying to save her colleagues all this work and unnecessary excitement, and when I consistently measured below 90, she finally said, “you know what, how about a little exercise. Can you stand up and jump a few times?” I did, and the number inched up past 90. I must commend her for her selfless devotion to her colleagues well being. Of course, I would not have “complied” and gone with her “scheme”, had I not felt perfectly well and healthy. It really is true that low blood pressure is a very normal thing for me. </p>

<p>Another episode. I drink a lot of water: i have always been a big water drinker. So, my output is also robust, if you now what I mean (the liquid type). IN the bathroom they put this monitoring device that shows how much you peed. Today, a nurse’s aid assigned to me was Denny - a big, burly guy with a good natured, hearty laugh and smile with a loud booming voice. Around 3 PM, he asked me, in his customarily good natured booming voice, "XXX, it’s only mid afternoon, and you already peed 2000 cc. I need to know who much you are drinking. We need to know there is a good balance between what you are drinking and what you are peeing. When I sheepishly admitted that I had no idea how much I had been drinking, he delivered a big jug of water and marked the water level, and proudly declared, “OK, now I can track how much you are drinking!!!” “And, oh, by the way, did you poop today? Yes or No. What did you say? I did not hear you well. Oh, OK. So, yesterday, but not today? I need to write this all down” </p>

<p>As he was leaving the room, I blurted out “Denny, in case you want to know, I did not have sex yesterday, and perhaps not today either!!!” All this while the door was wide open and my room is very close to the central nurse station where interns, residents, and nurses are hanging around.</p>

<p>After that, couple of nurses stopped by and shared some juicy stories of a former resident who turned out to be a pedophile, and a story of a patient (a former nurse, no less) who falsely accused a young resident of sexual assault while physical examination (it looks like she was a mental case: given she was VERY unstable and she landed at a mental health care facility shortly after). I have to wonder what opened the spigot of all this salacious gossips that were shared with me by the medical staff today :wink: :wink: ;)</p>

<p>(I am really tempted to completely outfox Denny by drinking water from different sources and peeing in a public bathroom, not in the bathroom attached to my room)</p>