CaroleHammett Posted January 22, 2009 Share Posted January 22, 2009 Hi, all. Just a quick note to let you all know that I've been offline for a couple weeks due to "ups and downs" that ultimately became all "ups" (thus posting under "Good News"). First of all, I developed some kind of infection last week, source unknown but probably respiratory since my supplemental O2 needs rose sharply as did my coughing (which became "wet" as vs. usual "dry"). Blood work also showed that platelet count had risen despite my being on blood thinners (Lovenox and Prednisone). On Monday, while at clinic preparing to have bi-weekly Vitamin C infusion, I suffered a small stroke (ultimately deemed a TIA--despite it lasting over 1-1/2 hours--due to speedy recovery (most symptoms gone within 1-1/2 hours). Fortunately, because I was at clinic at the time, I was given enough data to make informed decision as to whether to go to local ER. I was told that ER would not provide treatment (there was none) but would simply "monitor" progresss of stroke, so I opted to stay where I was and go ahead and have my Vit C infusion instead (couldn't hurt and might even help). My symptoms began with slurred voice, followed by enlarged pupil, inability to comprehend what was being said to me, walking like a drunken sailor and cessation of air flow in my two lower lobes. O2 needs rose from 1-1/2 supplemental to 4 liters. At end of 1-1/2 hours, however, the only symptom left was slightly (instead of fully) enlarged pupil. I later questioned how I could have TIA when on blood thiners, and doc told me I was lucky I was on thinners. If I hadn't been, instead of a TIA it would probably have been a full blown stroke and might even haven taken me out on the spot. I, of course, knew that I had to recover--and quickly-- since that was Monday and the following day I had an all day Inauguration Day Open House party scheduled and if I didn't make it, it would have ruined my cake (whose wording was: "Change is Here and So Am I!" ) By the next morning, my single remaining symptom was a very slightly enlarged pupil (and it was back to normal by Noon) so all I need to do now is hope that I don't have a recurrrence during next week (if I don't, it cuts down the odds of future recurrences). If any of you have had this and have input/information to add, I'd certainly appreciate your sharing it (for example, will I still be able to fly, despite cabin pressure, given that right now Florida, Carib and Mexico beaches are looking nice and warm and toasty compared to Colorado ) In the meantime, over 60 showed up at my open house (which lasted from 9:30 a.m. to 10:30 p.m.so yesterday (Wednesday) I spent the day being lazy. Today I'll have a lazy morning, then off for the second of my bi-weekly Vit C infusions. I am now on a week's regiment of augmentin/amoxicillin (for infection) and wearing anti-coagulation stockings (to reduce posssibility of future TIAs), but continue to be pain-free (although swigging more cough remedies than usual). Ergo, I'm still lucky, still opting for Quality of Life and now have new short term goal of surviving to see my grandson become a teenager on February 20! With Love and Affection, Carole "the Bounce Back Kid" Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin Quote Link to comment Share on other sites More sharing options...
ginnyde Posted January 22, 2009 Share Posted January 22, 2009 Carole, It would be impossible for anyone here to say that you do not have the right 'tude'. You accept each hurdle with grace and wisdom and jump over it with ease. May that continue. Quote Link to comment Share on other sites More sharing options...
Kasey Posted January 22, 2009 Share Posted January 22, 2009 I sure hope you just keep bouncing and bouncing and bouncing, Carole. There is much to be said about being pain-free. I'm with ya! Kasey Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted January 22, 2009 Share Posted January 22, 2009 Hi Carole. I'm so happy you're back in the saddle again. And that Inauguration party sounds incredible -- you are truly amazing! Re Lovenox and clots, I went for my monthly onc visit on Tuesday and they took blood as usual and then, after I'd seen her and while I was having my monthly Zometa infusion, they came back and announced they needed more blood because the blood they'd taken had 'clotted'. HUH? I asked how that could be with two daily Lovenox shots and they just shrugged. I suspected they'd just screwed up and made up the clotting story -- but now I wonder. Oh well. Hang in there and keep up the good work. Ellen Quote Link to comment Share on other sites More sharing options...
LovesLife Posted January 23, 2009 Share Posted January 23, 2009 Carole - glad to see you "on-line" once again. Honestly girl, my nick-name for you has always been "Tigger" because you bounce right back time and again! I am so glad you got to hold the Inauguration party (especially with that cake!!!) - it sounds like a blast. I watched on television and was so proud to see history in the making. Of course I don't have any advice on the questions you asked ... I just wanted to let you know I am glad to hear from you and happy things are on the "up" now. Take care Carole, Hugs, Linda Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 23, 2009 Share Posted January 23, 2009 Carole, how scary was all that with the TIA. You are a real trouper. And the inauguration party sounds great. Hope some of those 60 guests stayed to help clean up. Judy in Key West Quote Link to comment Share on other sites More sharing options...
phylsgirl Posted January 25, 2009 Share Posted January 25, 2009 Carole, Thank goodness you were at the clinic when all of this occurred and things did work themselves out. I know I said this before but Your attitude and wisdom are just awe-inspiring. I hope your Inauguration Party was a blast!!! Yes You Can, Carole!!! Bless you. *Hugs* Ree Quote Link to comment Share on other sites More sharing options...
Snowflake Posted January 25, 2009 Share Posted January 25, 2009 Carole, you need a tattoo...a pink rabbit playing a drum... I'm amazed by all you weather and keep on keepin' on like it was just a run in your pantyhose. Well, not really "amazed," I guess, since there really is no choice for folks like us, huh? Can't just lay around and feel sorry for yourself, so ya yank yourself back up and step right back to it. Take care! Becky Quote Link to comment Share on other sites More sharing options...
Wendy Posted January 26, 2009 Share Posted January 26, 2009 Carole, How scary!! I agree with Becky, I think you need to get a tatoo of the pink bunny with his drum. Keep on keepin' on, Wendy Quote Link to comment Share on other sites More sharing options...
Nick C Posted January 26, 2009 Share Posted January 26, 2009 Pretty amazing. Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted February 2, 2009 Author Share Posted February 2, 2009 Actually it wasn't scary at all (but do keep in mind that my dad used to tell people when I was a kid that I wasn't brave, just too stupid to be scared ). Unfortunately, the latest news is potentially not so good. After having the TIA on 01/19, last Thursday (01/29), I had two oxygen "episodes." Each lasted less than five minutes, but during them, my O2 levels dropped to 69-72% (rather than the minimum 92% that I usually achieve with only 1-1/2 liters supplemental O2). I was at the clinic when they occurred, about a 1/2 hour apart, and after the second one, my RN (using her stethescope) could find no air flow in either of my lower lobes. When the air flow did return, it returned first in my "bad" lobe (the one with the original large tumor), then in my "good" lobe (which has had, at the very least, multiple nodules since last July). These did not appear to be related to my cancer since I returned to my "normal" 91-94% within a few minutes (if due to cancer progression, one would expect a gradual increase in my supplemental needs, not drastic spikes). When I told my hospice doctor the next day, she advanced the possibility that both the two O2 episodes and the earlier episode that we all thought was a TIA may have instead been signs of seizures. She immediately prescribed anti-seizure medicine (Depakote), told me to stop driving and ordered a brain MRI since, if they were seizures, the most likely cause is brain mets. She was able to order the MRI, despite my being on hospice, due to the fact that back when I went on hospice, I had told them that if I had brain mets, but was otherwise okay, I might be willing to undergo radiation, depending on the test results and my overall situation at the time. When I called to make an appt for MRI, the imaging department told me they couldn't get in until next Sunday 02/08. I seemed to be handling it okay Friday night, but Saturday turned into "anxiety attack day" (those of you who have read "My Story" know that brain mets have been my nightmare; i.e., I was actually glad I metastasized to my liver!). In the past I've usually been able to get squeezed in the same day, but that was because I was at the clinic making a personal plea (playing the cancer card) so when I told my girlfriend what was up yesterday, she volunteered to drive me to clinic (about 15 miles from here) today so I can try and get them to squeeze me in (or at least to get an earlier appt.). The reason I want results asap is because they will determine several choices I might be making; i.e., if multiple nodules calling for WBR, I might decide to have no treatment and also to halt supplemental Vitamin C&D so as to give my liver a chance to beat my brains. On the other hand, if only a few nodules calling for cyberknife, then I might decide to go for it since in this case, I wouldn't be as susceptible to either (a) being ga-ga; or ( the severe fatigue that often accompanies WBR. There is always the possibility, of course, that the MRI will show nothing (that would be the best news, of course), but if there are brain mets, I'm wondering if Vitamins C & D are inhibited by the blood brain barrier, which would explain why the progression of my cancer has slowed to almost a halt in my liver, lungs and lymph nodes, yet appeared new in my brain (if anyone knows anything about the BBB and Vitamins, I'd appreciate your filling me in). And yes, I realize I'm getting ahead of myself and need to stop doing that (Carpe Diem!). I will fill you all in once I know something. In the meantime, you may not see much of me since I have out-of-state family flying in for the week. With love and affection, Carole PS I think 'd rather be a Playboy Bunny--or at least look like one. Treasure every moment as if it were your last.--Carole Hammett Quote Link to comment Share on other sites More sharing options...
jaminkw Posted February 2, 2009 Share Posted February 2, 2009 Carole, it all sounds quite overwhelming to me. If information is power, you are one powerful lady. Judy in Key West Quote Link to comment Share on other sites More sharing options...
LovesLife Posted February 2, 2009 Share Posted February 2, 2009 Carole - sending many cyber hugs! I am hopeful that your scan shows nothing untoward and I hope you are successful in getting an earlier appointment. Please keep us posted when time allows. Enjoy the time spent with your family Carole. Fondly, Linda Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted February 2, 2009 Share Posted February 2, 2009 Prayers foir the best Carole. Hang in there. Rich Quote Link to comment Share on other sites More sharing options...
Maryanne Posted February 3, 2009 Share Posted February 3, 2009 Hi Carole... as usual the saga continues. But you have one strong spirit. I am sending meditation prayers out to you for healing. And I am hoping that if something is there that cyberknife can just knock it on its *ss. Fnigers crossed for you young lady... Maryanne Quote Link to comment Share on other sites More sharing options...
Wendy Posted February 3, 2009 Share Posted February 3, 2009 Carole you are in my thoughts and prayers. Wendy Quote Link to comment Share on other sites More sharing options...
recce101 Posted February 4, 2009 Share Posted February 4, 2009 Amazing. What a great example you are, Carole! Ned Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted February 10, 2009 Author Share Posted February 10, 2009 Well, it's another case of good news, bad news: The bad news is that the brain MRI shows metastasis to the brain. The good news is that the brain MRI shows only one 9 mm nodule. The bad news is that the nodule is attached to the visual cortex, meaning that if I experience further seizures or growth in the nodule, I may go blind. The good news is that I'm far more likely to go blind than ga-ga. I've already met with my old radiation oncologist (to whom I gave a copy of my brain MRI and the radiologist's report). He's recommending WBR on the basis that if one nodule has already appeared there are undoubtedly more to follow. A cyberknife oncologist now also has a copy of the brain MRI and radiologist's report and he will be providing my naturopathic MD (Vitamin C infusions) with an "unofficial" (no fee) recommendation. My hospice doctor and my oncologist are requesting that another PET scan be done so that I can make an informed decision as to whether I want radiation at all (For example, if a PET scan shows that I'm about to kick the bucket, then I'm not about to reduce my Quality of Life during my remaining time with radiation side effects.). A chest x-ray taken last week, when compared to two earlier chest x-rays, shows that during the past 14 months: (a) In the first 7 months, my original tumour grew 1.8 cm. ( In the second 7 months, my original tumour grew only .7 cm. What this tells me (by implication) is that once I started taking large doses of Vitamins C & D (during the second 7 months), the progression of my cancer slowed to less than half. Once I have more information, I will "officially" post my findings somewhere "appropriate" (under Treatments or somesuch) in order to gather more information (Knowledge is power.). In the meantime, I continue to consider myself one lucky woman and to treasure every waking moment. With love and affection, Carole One's destination is never a place, but a new way of seeing things.--Henry Miller Quote Link to comment Share on other sites More sharing options...
LovesLife Posted February 10, 2009 Share Posted February 10, 2009 Carole - wish it was just good news/good news . Know I will be thinking of you as you are making some difficult decisions as to treatment in the days ahead. Wouldn't a crystal ball be a lovely item to have right now? Have you had any further seizures since that day in the hospital? Is there a good possibility that you will have more, or is that again part of the totally unknown? It is certainly encouraging that the original tumor is being held at bay - now if these other stragglers could be dealt with, without compromising your quality of life, that would be fantastic. I feel "lucky" to "know" someone like you. Will be waiting for your follow up news and hoping it is good only. Hugs, Linda Quote Link to comment Share on other sites More sharing options...
jaminkw Posted February 10, 2009 Share Posted February 10, 2009 Carole, I am sorry about the brain mets. You are a trouper and just seem to keep processing all of this with great courage. Judy in Key West Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted February 10, 2009 Author Share Posted February 10, 2009 Hi, Linda and Judy and thanks. I forgot to add that my hospice doctor immediately put me on anti-seizure meds (Depakote) and also took away my car keys. I have no idea how effective the Depakote will be, but if I do nothing, it won't matter because the growth of the tumor will cause a reaction anyway. The report does show very little edema (swelling), which is apparently the base cause of the seizures anyway. Right now, the hardest part is trying not to over-analyse prior to the PET scan. As I wrote earlier, until I know how far gone I am since last summer, I won't know whether I'll be doing anything at all. With love and affection, Carole Don't be afraid of death... Be afraid of the unlived life.--Tuck Quote Link to comment Share on other sites More sharing options...
Janet B Posted February 10, 2009 Share Posted February 10, 2009 Carole I just wanted to tell you that your positive, determined attitude is such a huge inspiration for me. You are in my prayers. Peace - Janet Quote Link to comment Share on other sites More sharing options...
SandraL Posted February 10, 2009 Share Posted February 10, 2009 Wow Carole. Yet another medical adventure for you tackled with your usual grace. Glad to hear you got through that and on to your party. Keep staying well my friend. Sandra Quote Link to comment Share on other sites More sharing options...
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