tag:blogger.com,1999:blog-33229434681980286962024-03-12T22:02:00.164-07:00Half the Energy, Twice the SpunkKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.comBlogger111125tag:blogger.com,1999:blog-3322943468198028696.post-32894044911187553002012-09-11T19:36:00.003-07:002012-09-11T19:36:32.245-07:00SeptemberSo much for my diligence with updates... good news is I was too busy not being sick to get on the computer!<br />
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I saw Oncology yesterday and things are going reasonably well. <br />
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The good news:<br />
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<li>This week marks 12 weeks of remission for me - this is the longest I have sustained a remission in over 2 years. </li>
<li>The chemo injections are not making me violently ill as the last few drugs did. </li>
<li>My bone marrow is tolerating it beautifully (the only other drug that elicited a sustained remission put me in bone marrow failure and earned me an extra month (Christmas sadly) in the hospital fighting severe infections) and my liver is standing up beautifully.</li>
<li>I'm eating about 75% of my calories at this point - the most ever since this started! </li>
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IF my next appointment in 3 months finds me in remission still, we will start discussing removing one of my central lines! (I have a port-a-cath for the IV nutrition and the fluids and meds, and I have a Vas Cath (picture a garden hose) for the plasmaphoresis treatment). The last time we needed the Vas Cath was in June and if the remission holds for another 3 months we can be hopeful I wont be needing the regular plasmaphoresis treatments, and thus we can get rid of the biggest, and scariest line I have. </div>
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The port will stay in indefinitely as I can not (and may never) tolerate even half of my daily required fluids - nor can I tolerate any sort of antibiotics orally. The port however is the one we like - it sits under the skin in my chest just below my collar bone, and when needed we 'access it' (poke a needle with IV tubing attached into it), and use it - then when it's not needed, we can remove the needle/tubing and the port is sealed beneath the skin - it means I can swim/shower/etc without worrying about it. </div>
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(It also means I can dress up and wear a nice dress/blouse without having big monsterous lines and iodine and tape showing - cause that's SO fashionable...). </div>
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The bad news: (which really seems trivial in the 'big picture')</div>
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<li>We talked to him about the fact that when I get my injections (Friday) I then spend between 2 and 5 days basically bed ridden. I can get up and move about but I get very sore/sick very quickly unless I stay laying down/reclining. The tiredness is indescribable - I quite literally will fall asleep at the kitchen table. We're going to change 'chemo days' so that I can feel well for the weekends and sleep away a tuesday or wednesday instead but some weeks (like last week) it drags on all week... I was finally feeling a bit better and realized it was Friday - chemo day - again. This week however went MUCH better - I slept off Sunday but otherwise was in decent shape. Anyways - the bad news is his advice was (while he was very sympathetic about it and did say some people just get wiped out - something about it being an antimetabolite and at that point his words got too big even for me) that it's most likely something I will just have to cope with. I didn't expect a 'here this pill will fix it!' reply but had hoped for at least a 'it gets better over time'. Unfortunately we've given it time, it's not improving. He gently said that I may have to convince myself that sleeping and being sick for a few days is better than where I was 2 years ago, starving to death and living on a hospital ward. Point taken.</li>
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I guess I can't complain - now that I typed that up the bad news seems pretty piddly compared to all the good news. </div>
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That's about it. </div>
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Boys are back at school... Brandon is THRIVING at the moment... just a ball of healthy, happy energy! We're trying to sort out the process of finding and paying for his next wheelchair as he's outgrown his kindergarden chair (we got 5 years out of that guy - pretty darn good!)... We maxed out our insurance wheelchair coverage getting him that first set of wheels, and the chair we want to get for him (ultra-light which means he can use it independently) will likely clear about $3500, but we're hopeful the province will cover some-or-all of the cost (not holding my breath). </div>
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But yes - they are both doing fabulously right now - school's going great, both the boys have several friends that we've slowly been getting to know (and I am therefore getting to know a few other moms and dads locally which is great - only took me 5 years...) and tomorrow Tyler has his first 'afterschool playdate' at his buddies house and is suitable thrilled (he was half asleep tonight mumbling how he couldn't wait till it was morning cause then he could say 'im going to my friend's house today!'... kid's got a more active social life than me!)</div>
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So yea. </div>
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Not fabulous - the tired/sick thing gets very exhausting and a pretty big bummer some weeks, and I am really struggling to find a way to be 'ok' with that being my new reality... but - it's nice to be focusing on problems with comfort rather than survival. </div>
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Perspective. </div>
Keelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com0tag:blogger.com,1999:blog-3322943468198028696.post-52690981177123526042012-08-16T19:07:00.002-07:002012-08-16T19:15:35.784-07:00Summer - A Fine BalanceWell, as usual it's been a while. Even with the updates being spread out, I like using this site as an easy way to keep my (very VERY large and wonderful) family up to speed. Please - any family/friends who read this and can think of any family that might want to see it, send the link along for me. I only have a few email addresses.<br />
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Anyways.<br />
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It's been a bumpy few months... lots of good, lots of frustrating. The good was pretty awesome. We got lucky twice and managed to plan 2 family trips that did not get bunged up with hospital admissions or sick kids. In April (or May??) we drove to Minneapolis for 5 days and did the Mall of America/Science World/Museum/Ikea/Outlet stores/Mynards trip - we all loved it and desperately needed it. We'll be paying the whole thing off until Tyler graduates but it was well well worth it!<br />
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Then, in July, in between blood infections and hospital admissions we managed to plan and actually pull off a 4 night stay at a cabin on Blue Lake (Duck Mt Park - it's on the MB and SK border). 4 days of beach, boat, fish and sun - it was wonderful! I had the added perk of having just finished several IV courses of heavy duty steroids (whole other story) so the entire trip saw me HYPER and feeling awesome in the wake of the steroids.... it was good. <br />
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Unfortunately the rest of the time in between has been challenging. I relapsed in June and spent a few weeks getting plasma treatments to get back into remission. Then we upped the chemotherapy dose in the hopes that it will KEEP me in remission. That finished up and I promptly developed a sepsis infection that saw me in and out of hospital for another 2 weeks. Then I basically lost the will/strength to do anything more strenuous than lift a tea cup and turn a book page for 8 weeks. <br />
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Luckily, I have 2 fantastic little boys who are quite fine with a mom who has to trade bike rides and beach trips for story time and fiddle lessons. In spite of my complete exhaustion the boys and I have had a pretty nice time just being together all summer. <br />
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Yesterday I lucked into a 'good day' (the first in weeks) where I could actually think about leaving the house, so Dave came home from work and we took the boys to Wal Mart to do their school shopping - shoes, supplies, and they each got to pick out an outfit, and their 6$ of allowance was at hand. It was a lovely day. <br />
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So that's about it. <br />
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Right now I am sick. not as sick as I have been - but sicker than usual. The disease seems to be in check at the moment (knock on wood), so we're not sure if it's the side effects of the chemo, or something else altogether, but I'm worn flat out. I'm maxed out on my pain meds and nausea meds etc and while I don't hurt (a blessing I don't take for granted), the net effect is that I am very stoned from the pain meds, and when im in that shape I cannot drive, concentrate, or accomplish alot of anything. It's better than hurting, but it's a pretty miserable state to try and muddle through for more than a few days. I'm on day 15 roughly. Searching for that light at the end of the tunnel. <br />
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The boys head back to school in a few weeks, and while I'm thrilled for them (they are SOOO excited!!), I'm also really sad - I had so many things I WANTED to do with them - it's mid august and I have yet to put my feet in the sand at the beach 2 blocks from my house, and we planned on zoo trips, picnics, mini golf, carnivals, swimming lessons, bike rides, walks to the ice cream shop on Sunday evenings - and instead they spent a whole lot of time sitting around the chemo room, the ER waiting room, and our living room, watching movies because it was the only activity we could actually do TOGETHER. <br />
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I am trying really hard to stay positive and remember the 'fun' parts - but it's really hard to focus on the positive when the negative is so friggen stubborn and prevalent. <br />
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That said - I am extremely thankful to have had the chance to read my babies their bed time stories at least 90% of the bedtimes this summer. For that I'm grateful. <br />
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Hoping the fall will bring me the stability that we've been desperate for now for 2 years. <br />
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Thankful for my 2 happy/healthy sleeping boys in their beds.Keelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com0tag:blogger.com,1999:blog-3322943468198028696.post-37637647812061786982012-05-23T06:56:00.002-07:002012-05-23T06:56:41.828-07:00We're Still KickingWell it's time to dust off the keyboard and rejoin the land of the living I think!<br />
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Just a quick update for now - I will try to keep this somewhat updated for family/friends. <br />
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Things here are going fairly well. I had a few incidental hospital admissions this year but other than the meningitis in January, I haven't been really SICK for a while now. <br />
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I started Methotrexate (chemotherapy drug) about 8 weeks ago now, and it is safe to say at this point my 'better' state is because of the Methotrexate - this is awesome as the side effects, so far, are not prohibitive. This is the first drug we have found even a bit of a balance - they have all worked on my disease, but the side effects were too extreme. So far so good.... <br />
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We just got back from an impromptu, budget-vacation to Minneapolis last week - it was exactly what we needed - a family escape, just the 4 of us, with us all well... It was awesome - we just had loads of fun the entire time!<br />
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The boys are doing very well - aside from some anxiety around mom disappearing (I can't even reassure him - 3 times this year already the poor kid has either gone to bed, or gone to school, only to wake up/come home and find mom gone to the hospital for days or weeks). But they are working through it pretty well and we're hoping things will settle down once summer gets here and they get to spend all day long with me - they will be begging for an admission by July I'm sure!<br />
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So that's that... <br />
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It's all a bit surreal - I don't remember how to not be 'sick'... After 2 years of the 'lets figure out how to survive the week' mindset, I have no idea what to do with myself now that it's not such a focus... I find myself thinking about things (the future - my 'career' down the road - whether we want more kids - what we want to do next winter...) that I haven't had the luxury of thinking about in almost 24 months... it's really unfamiliar and a bit hard to get used to... But it's definitely wonderful. <br />
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So - Here's hoping this didn't jinx it - it's always such a very fine, delicate balance when things are good - it's so so easy to upset it. <br />
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Fingers Crossed...Keelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com2tag:blogger.com,1999:blog-3322943468198028696.post-52250905455241690042012-01-15T20:23:00.000-08:002012-01-15T21:38:36.101-08:00Bad Week (to put it lightly)Well I wrote a 5 page diatribe on the past few weeks and realized it was idiotically long. Here's the Cliffs Notes version: <br /><br />In November I relapsed, in December I started IVIG and TPN again. Last week my second IVIG infusion caused what we are hoping is Aseptic Meningitis (a very rare side effect - sounds right up my ally) after the "we just want to cover all our bases" Spinal Tap (Holy Hell... "some discomfort" is apparently doctor speak for 'it'll feel like we're cutting you in half with a chain saw - then the real pain will start'). I will never shed the guilt I now have over allowing them to do this to my 13 month old baby without any sedation or pain meds... My heart will always ache when I think of it. Don't allow your child's doctor (or yours) to talk you into an unsedated/unmedicated spinal tap if your child (or you) can tolerate the sedation meds - it takes all of a minute longer and some closer observation for a few hours but it's humane. I HAD sedation and it still cleared my pain scale (this from the girl who watched as her surgeon performed a deep-thigh muscle biopsy!). Barbaric. <br /><br />But, as it turns out, necessary. The spinal fluid was a nightmare and was full of puss essentially, along with a bunch of other unwanted jumk. (lovely eh? pus-filled spinal fluid - excellent ice breaker). <br /><br />Within hours I was diagnosed with Meningitis, admitted and the rest snowballed from there. (thankfully the spinal fluid did not have any visible bacteria, and the cultures grew nothing, it is assumed Aseptic Meningitis brought on by IVIG treatment. I'm an awesome date I tell ya.<br /><br />All immune treatements were stopped until the meningitis started resolving. Thursday I had Plasmaphoresis (google it) and had a severe and terrifying reaction to the treatment... very nearly had a code called on me, spent the next 3 days violently and horrifyingly sick. <br /><br />It's finally starting to improve, however my gut remains in full revolt. Haven't kept much at all down (including meds - compounding things) and rely on IV everything - fluids, fats, nutritions, antibiotics, antiemetics, narcotics, vitamins/minerals, etc etc - We wont know just how hard a hit my GI system took this go - we always seem a bit further behind after illnesses. Monday's goal will focus on alternatives to IV meds - or getting them covered. <br /><br /><br />We're working with Palliative Care to come up with an acceptable arrangement that keeps me at home. Hoping for things to improve once we have them on board (This is not Hostice care which focuses on helping people/families who are dying navigate the system in a manner that keeps their priorities on the foerfront; Palliative care is 'comfort care' - they focus on making patients comfortable and coming up with solutions that work for everyone... terminal or life-threatening/life-limiting diseases are all open to Palliative input. I'm hanging my hat on them. <br /><br />Tomorrow will be a better day. It HAS to be. <br /><br /><br />Thanks for popping by - Family/friends, feel free to pass this along to others I may have missed!<br /><br /><br />~KKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com2tag:blogger.com,1999:blog-3322943468198028696.post-50303029948085932892011-12-29T21:38:00.001-08:002011-12-30T10:25:58.576-08:00All is not well.I just typed a far far too long and disjointed entry.<br /><br />To save on time, I will be brief today. Should you want more details on any of it, pleas ask... Questions are always good. Especially when the come from the '12 and under crowd! Either email, or just leave a comment with a ? and I'll explain whatever you want. <br /><br />GggyjQuestions are totally encouraged, and I'll answer any questions as best I can. Please encourage the kids in the family to express their questions... All in all the questions from kids tend to be the best ones. <br />;66<br />Alright... Here's a timeline that will bring us to today:<br /><br />July - 5 cycles of plasmaphereskis followed by the IV rituximab (chemo drugj) every week for a month. <br /><br />August - two admissions for uti/kidney infection/urosepsis.<br /><br />September - inpatient again for urosepsis. At this point I was seeing benefits of the rituximab, and I was eating almost totally by mouth. The tunneled line was pulled before we got word on the cultures.<br /><br />October was lovely. No TPN, no central line... It was a glorious month!<br /><br />November was the start of the spiral. By late November I was losing weight , dizzy, my heart was a mess, I wasn't eating and more often than not I felt pretty crappy.<br /><br />December was spent getting a new central line (I have a port a cath), starting the new drug, and getting a few cycles of IVIG. First cycle landed me inpatient for a weekend due to aseptic meningitis. <br /><br />This past week has been a bad one. Too many bad days and far too few tolerable ones, never mind 'nice' days.<br /><br />I chose today to postpone the next IVIG dose, as I've had a very sick week and needed a break. <br /><br />A huge thank you to everyone, for the moral support, physical supports (my laundry gets taken care of)' and financial supports (6 months of no work after he got let go for missing too msuch work on account of what's going on, combined with the tremendous drop in income when he finally found work that allowed the flexibility we require... Add in the thousands of dollars we pay for insurance, meds, travel, parking, gas money, missed work to care for me on bad days throughout the year... It's been a challenge as the life we had was based on twice the income. <br />I'm reminding myself that I'm here, at home, with my family and that should be more than enough... But when we are constantly reminded that any attept to get ahead financially is usually tossed out the window (we spent two years pouring money into our adoption account. We managed to save up over four grand. In one swoop it was all gone, between insurance co pays (it's great that my wheelchair is 80% covered but that still leaves nearly a grand from us) and life in general.<br /><br /><br />Just a grumble... I always knew it was expensive stuff being sick, but I had no idea. At this point we have about $20,000 worth of equipment for Brandon and I waiting to be ordered (power assist wheels for my chair, a new chair for brandon, basic supplies for tube feeding, and a host of smaller things we have on that list) because we don't have the money or time to organize the orders.<br /><br />Just sharing the realities most families like ours are faced with... <br /><br /><br />Well enough of me babbling. I'll try harder to update a bit more often.<br /><br /><br />Please pass this link to anyone else you think might want to stay updated.<br /><br />KKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com3tag:blogger.com,1999:blog-3322943468198028696.post-63753611407475718072011-11-29T07:47:00.000-08:002011-11-29T08:47:46.460-08:00Hello Out There!Wow - I need to do some serious revival work on this blog!! Life is so hectic it's hard to remember to update! <br /><br />It's been a good few months, and a pretty rough few as well. The boys are at school and loving it, taking the bus like big kids ( **sniff** ). Very healthy and growing like weed. :) Parents often report a bit of a honeymoon from the major mito stuff when kids are about 6 or 7 - the high energy demands of infancy are no longer in place, while there is growth and development happening, it's at a slower pace so it doesn't require as much energy from the body. We have definitely seen that - Between Brandon's feeding tube, and this plateau we are hanging out on at the moment, he's really just thriving. We know the next major hit (often a harder hit than the one children deal with in infancy) is expected to come with puberty, but we're hoping it's not too hard on him. <br /><br />Dave has settled into his new job and is really enjoying the people there as well as the ability to come home at the end of the day. We're all happy to have him home!<br /><br />Onto me<br /><br />It's been a ride. <br /><br />I'll do the 'nutshell' version just to cover all the bases: <br /><br />January<br />Discharged in January '11<br />PICC infection, line pulled, tunneled line placed, days in the hospital.<br />Several doses of IV solumedrol, and high-dose prednisone orally. <br /><br />February<br />High Dose Prednisone through the month <br />Noticeable improvement <br />LOTS of energy, jogging, feeling pretty great. <br /><br />March<br />Steroids induced Type II Diabetes<br />Weight doubled to 165lbs in less than 3 weeks. <br />Off the steroids and start investigating chemo. <br /><br />May <br />Line breaks - HSC repairs it<br />Severe sepsis blood & line (due to line repair)<br />Heart/Blood pressure goes down<br />Motility stops<br /><br />June<br />Recovering at Moms<br />Preparing for Chemo (Rituximab)<br />Surgery (Vas Cath) <br />Plasmaphoresis<br /><br />July<br />Weekly chemotherapy (rituxan)<br /><br />August<br />2 week-long admissions for UTI/kidney/sepsis infection (Urosepsis)<br />Officially in remission mid August<br /><br />September<br />another week-long admission for resistant Urosepsis.<br />Line pulled, TPN/Fluids stopped.<br /><br />October<br />Fungal skin and mouth infections (lots of antibiotics = lots of yeast)<br />heart/blood pressure deteriorating<br />GI deteriorating<br /><br />November<br />Officially relapsed.<br />Prepping for a port-a-cath placement, starting fluids and TPN this week or next, and gearing up for some 'real' (nasty) chemotherapy. <br /><br />Merry Christmas.<br /><br /><br />We are now looking at a very upside down holiday season once more. <br />The hope is that we can keep me home for the holidays this year - and with the speed my GI team is arranging stuff I think I might actually manage to stay home. <br /><br />I'm discouraged, exhausted, scared, angry... the whole gammut. The first 3 relapses and 'starting over' that followed were awful. Now I'm there again, starting from a place where I am sick, weak, nauseas, in pain and a touch emotional and even thinking about the weeks and months that lie ahead leaves me completely befuddled. <br /><br />I hate this disease - it 'gets better' with treatments just long enough for me to go 'wow! I'm actually better!' then it pulls the rug out from under me. Over and over again. <br /><br />So yea - I'm totally overwhelmed at the moment. We are working on getting set up with a private nurse so I can stay home through infections when possible. Working on a Port date ( https://www.haemophilia.ie/uploaded/image/Port%20A%20Cath.jpg - this is a diagram of what a port is - if you want more info just google it - it's a central line that lives under my skin and is accessed with small needles daily - the perk is at the end of the day I can remove the needle, and not have anything at all on my skin! <br /><br />I'm looking forward to being hydrated again - and not waking up miserably sick.. <br /><br />So that's us - I see Oncology on Monday to arrange Chemo and the TPN clinic is working on getting my line and tpn underway. <br /><br />I'll keep the blog update better as we go. <br /><br /><br />KKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com0tag:blogger.com,1999:blog-3322943468198028696.post-3515212119057215372011-06-21T21:54:00.000-07:002011-06-21T22:12:50.807-07:00Nuts n Bolts of it all.Well my last fatigue driven blog entry was pretty flaky and disjointed, so I figured I'd just give the technical specs of things in this one. <br /><br />Thursday morning I go to CancerCare for round 2 of the chemo we are attempting to control my immune system with. (and by control I mostly mean 'kick it in the butt so it stops making me sick - but hoping not to kick it so hard that it lets other garbage make me sick - yay tightrope walking). <br /><br />Basically things went down like this: <br /><br />March 30th - spent my birthday at CancerCare discussing our options. Options ranged from 'really crappy and scary' to 'even crappier and scarier'. We decided on the blander choice of really crappy and scary - decided to try a 3 month trial of Mycophenelate (MMF - an oral chemotherapy drug - also called CellCept). The upsides - it was oral and could be done at home. The downsides - it was a 'broad immunosuppressant' and would likely wipe out all my immune system. It also was slow - it would be 3 months + before we knew if it was going to work or not. <br /><br />Most of April ticked by waiting for an appt to see my cardiologist and start the Mycophenalate trial. I was acceptably functional - almost completely NPO (nothing by mouth - no food or drinks) and doing OK on the TPN. The steroids packed a literal 65lbs of fluid on me over the winter, and much of March and April were spent watching that extra weight fall off me - it continues to do so. <br /><br />May came along and kicked my butt. I can't remember specific dates but I wound up with a broken central line in mid-April sometime - the seal at the tip of the line (the part where the cap 'screws on' to the line) had given way. the nurses cut the line, and repaired it with a new end and basically a bunch of crazy glue. 2 weeks later, I had bloodwork done at the hospital through that line (first time I used that lumen since the repair). 2pm the nurse drew the blood and flushed the line. 7pm I was at home, septic, with a temp of over 105. It was unreal. I spent several days inpatient, on massive antibiotics, the line had to be pulled, placed a PICC line (central line that goes into the upper arm rather than the chest) and just overall got good and freaked at how horribly sick the infection (which was considered 'mild' for the organism they grew - and it was treated very fast... I cannot imagine a 'non-mild' version of this infection... the doc explained that the specific bug I had carried with it a 48-52% mortality rate. Scared me strait. <br /><br />Fuelled by the terrifying sepsis ordeal and how close I realized I was walking to the edge while depending on TPN daily was a good kick in the butt. I called my oncologist and said I no longer want to trial anything - I want the most agressive, most likely to work treatment they could offer. <br /><br />Within a week I had a vas cath (IV in the jugular that is the size of an HB pencil - i kid you not) and was starting a 14 day course of plasmapheresis (the treatment where the blood runs through a centrifuge and all my plasma is removed and replaced with donor products... 5 times over 2 weeks). Last Thursday I started my first round of IV chemotherapy drugs. These are the big guns and we are all very hopeful we will find some improvement with them. <br /><br />So far the chemo is making me profoundly tired (told to expect that) but not horribly 'sick' like I expected, so that is a bonus. I spent the weekend once again shuttling back and forth to the ER for IV antibiotics for what was quickly evolving into a kidney infection - but again we nipped it early and only needed a few days of Rocephin. <br /><br />My opinion of my local ER has grown immensely - the docs I have seen there lately have been fantastic, and the nurses are beyond awesome. <br /><br />I have 3 courses of chemo left, and then we wait. <br /><br />We are all hopeful it will work. <br /><br />If it doesn't, we have other options... bigger, scarier and more sickening types of chemo, or (last resort) plasmapheresis forever (this poses serious and unique access issues - a small central line in the chest or arm is fine long term - a vas cath is massive, and has always led to signs of infection for me (high sed rate/ESR, left shift, elevated white counts, etc etc) - while I've never gone septic from one they have also never been in long enough to do much long range damage. Having a vas cath of any kind in one's body long term is a serious serious risk. <br /><br />But - it's an option... and one that beats the alternative at least. <br /><br />So we have lots of options yet - lots of hope - and several weeks to wait and hope that this current trial works. <br /><br />I will very quietly say that my appetite is dramatically improved - I am eating small meals all day long and while they do hurt/make me sick, it's manageable - which it hasn't been since September - so this is a huge 'upside' - but we're told to expect it to get worse again as the plasma wears off - then slowly improve once more as the chemo works.... <br /><br />so roller coaster time. <br /><br />Sadly we are in the process of trying to find a loving home for our 2 wonderful cats. because of the type of chemo im on, and cats knack of carrying/contracting/spreading otherwise harmless germs that could kill or maim an immunosuppressed person very rapidly, we have been forced to make the choice to find them new homes. We're all very sad. the boys are crushed. I'm very upset about it. But - it needs to be done. Life will go on. <br /><br />Just one last stupid thing we have to 'lose' in order to try and 'live'. <br /><br />Upside - everyone is fairly 'well' at the moment. <br /><br />Chemo is going well. <br /><br />My family is fantastic. <br /><br />I'm beat and recognize how lucky I am to have a bed, in a warm house, with my loved ones, waiting for me to sleep in. Focusing on that.Keelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com2tag:blogger.com,1999:blog-3322943468198028696.post-33957699778567837562011-06-20T02:13:00.000-07:002011-06-20T02:56:37.029-07:00I haven't dropped off the edge of the earth - I promise.I am routinely surprised at how fast time just slips away when I'm not paying attention - It's been waay too long for an update, and there is indeed much to update. <br /><br />I'm not really sure where to start, so I'll kick things off with kid-news. The boys are both doing very well - they are wrapping up school and are easily slipping into 'summer-mode' as the days warm up. Brandon has made friends with a little girl across the 'dandelion field' who routinely runs through the field that separates her back yard from my parent's. I can't tell you how it feels as mom to watch a little girl run across a field, just to come to the back door and ask if Brandon can come out and play. So many times I have worried and wondered how other kids will treat him, and whether he will be blessed with the same awesome freedom of imaginary play in the fields around my own home growing up... So much was learned and shared and so many memories were made by the completely natural acceptance that kids who live near one another fall into. I have found myself awake at night worrying about whether Brandon would have that joy, freedom and opportunity for growth that most other kids enjoy without a second thought. Last Sunday, disguised as a little blond haired, blue eyed girl who was so happy to find a friend across the field - one that was her age, and liked the same things and played the same games - and her one and only response to the fact that Brandon does not talk - "oh good! I know some sign language from school!"... and off they went. She has come to my mothers back door countless times in the past weeks, each time simply asking if Brandon can come out and play. And he can. And does. And my heart completely melts. And I am, once again, amazed at the complete acceptance, and the total dismissal of any of Brandon's perceived 'limits'. To her, he is just a boy across the field who likes to pick flowers and play make believe. <br /><br />That just might be the single greatest gift I've been given in the past months. The reassurance not only in Brandon's ability to make and keep friends - but in the ability of the children around us to simply dismiss all the things we parents have worried and fretted over. <br /><br />Throw in the little boy next door who has befriended both boys (mostly Tyler though as they are the same age) and I have had a lovely time watching all the 'normal' going on in my parent's back yard. Summer is shaping up to be lovely. <br /><br /><br />So that's the boys - both great - loving living at Ama and Grandpa's house, being spoiled by all the various caregivers that wander in and out of our days... and amazingly, resiliently, taking every bump, turn and hurdle in stride. And finding quiet moments to sneak in some 'mom' time wherever possible - be it stories, a movie together, a computer game together or simply googling how to grow peanuts or how many recipes we can find that include 'crickets' of any form... <br /><br /><br />On to the less 'fun' stuff. As you have likely gathered, we are living at my parent's place for the time being - I am useless without the nearly constant assistance from various family members, cousins, neighbours, friends, and other awesome kind-hearted people in our lives. Living at my parents means we are closer to the rest of my family (our home is about 15 minutes away from my parents home - and everyone in our 'support network' lives near my parents rather than us), and it means my parents are able to help with the day-to-day minutia that would leave me unable to function by mid-afternoon. <br /><br />I am profoundly dependant on those around me - it is possibly the most difficult part of all of this. I have been so fiercely independent through even the most challenging stretches of time - but now I am done. I need help with everything. The kids care is heavily covered by family - feeding them, keeping on top of Brandon's meds, tube feeds, baths, school, etc - I can literally do nearly none of it. <br /><br />I struggle daily with the reality that, even if I truly wanted to (which i do on many levels and absolutely don't on others), I could not move my family back home at this point. We've accepted that at this stage in the game (And we've learned through trials) I am unable to care for myself, never mind my children. I have no strength to do anything beyond park myself on the couch or lazyboy and read/carve wood/write/watch TV/ putter online (and online puttering has dropped drastically - the desire to draw comfort from those in similar predicaments has been overrun with the 'reality' many of those folks face. Realities sadly worse than our own - which is pretty dismal at times. <br /><br />So yes - most of my day is spent on a couch, when I am not shuttling back and forth to the ER for more IV antibiotics (courtesy of an ill-timed kidney-infection-wanna-be), or to the city for chemo, appointments, procedures or any other exciting soiree at a random hospital. <br /><br />The lack of strength, and inability to care for myself and my kids has been a hard pill to swallow. <br /><br />The long term implications scare me. <br /><br />We have alot of hope that once the chemo kicks in, I may well get back to a functional level - but we are also being logical and trying to lay some groundwork for long-term implications if things do not go as we hope they will. <br /><br />Basically we will have to overhaul our life.... I cannot be alone for any stretch, with or without kids. I cannot drive (and will not in the forseeable future). I cannot clean or cook. I cannot tidy the kid's rooms/messes. I am, for all intents and purposes, more dependant than my kids in many ways. For anyone who knows me, they know THAT is the toughest pill of all for me. <br /><br />Unfortunately this makes moving home a challenging goal. <br /><br />In many ways I am very eager to be at home, around my things, and books, and just 'home' with my family. I miss morning coffee on the deck and kiddy pools on the grass, and hours of 'play' outdoors for the boys. I want to cook for my family, and get the boys off to school in the morning. I want to sit on my couch in the afternoon when the boys are both at school and Dave is working and just revel in the alone/quiet time to read... instead the idea of that scenario fills me with panic. <br /><br />The sepsis infection a month ago (April?? I can't remember now - we've lived with my parents ever since, first out of convenience, then necessity, now - fear?) scared the crap out of me. The morning I was at my worst I quite literally could not even give myself the advil and I'm fairly sure if Dave was not there things would have gone very very badly. That stole my confidence in being independant. <br /><br />Thankfully my parent's place is and always has been 'home' for me and the kids (and Dave will reluctantly agree as well). And more thankfully my parents are awesome - as are my aunts, uncles, cousins and friends who have helped to ensure (and continue to) that I am not alone... They have made my newfound dependance on others a bit easier to adjust to, and the opportunity to get closer to so many family members and friends has been an unexpected blessing. <br /><br />Because of this circle of family, I don't find myself alone, either at 'home' (my parents - which they have completely made 'home' for me and Dave and the boys) or at hospitals - Chemo days are filled with family (and this week board games with my cousin Becca!) - appt's are chances to catch up with aunts or uncles, and scary procedures that require I stay in the city overnight are a chance to stay with my brother and his family and catch up... <br /><br />I have leaned heavily on my family these past months, and they have not failed to stand strong. <br /><br />My hope is that with time I can lean less and less - but for now, I find comfort in their company and assistance... and I am continually blessed with this chance to truly get to see how tightly knit we really are. You are all amazing, and you all know who you are I'm sure. <br /><br />It is 5am and I have yet to get any sleep - between the chemo side effects and Brandon's newfound fever (cold) I have pretty much dozed in and out tonight - but I"m not concerned because tommorrow (today? - in a few hours?) I know I still have lots of family to lean on to help... and a day with my boys on the couch lined up sounds just about right. <br /><br />I'll try to update more - and hopefully more coherently - sleep deprivation and general chemo-crap feeling isn't making the words come easily this morning. <br /><br />good night.<br /><br />KKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com0tag:blogger.com,1999:blog-3322943468198028696.post-32588121748951856942011-06-04T09:23:00.000-07:002011-06-04T09:57:27.210-07:00Deja-VuIn spite of pretty sparse updates on my part, alot has indeed been happening. <br /><br />I'll make this the short version... <br /><br />In March Dave and I met with the oncologist/hematologist to discuss treatment options. We were given several choices, all with different sets of risks/side effects/effectiveness. As is usually the case, the more likely the option was to work, the worse/scarier the side effects were. <br /><br />The decisions were basically 'drug A - with lots of scary side effects, and a 30% chance at working' or 'drug B with a 70% chance of working and even more/scarier side effects. All the choices were different types of Chemotherapy to supress my immune system and the irony of chemo is that while it can cure cancer, the side effects almost always have 'cancer' at the top of the list. So yea. <br /><br />Initially we chose the less awful (and less likely to work) oral medication as it seemed a bit easier to wrap my head around. Unfortunately that option would take 13-15 weeks for me to see any improvements and it would wipe out my immune system completely. <br /><br />We were comfortable with that choice and we were working at making it happen (perscriptions needed to be written and I had to have a cardiac assessment first as a baseline). <br /><br />Unfortunately, while working on that, the end of one of my central line lumens broke, and I had to spend a day at the ER getting it repaired. It was pretty easy and really just took a day of inconvenience and life went on. <br /><br />2 weeks after the fact, I went for my regular bloodowrk (drawn from the lumen dedicated to bloodwork - the one that had broken and hadn't been used since). 6 hours after the bloodwork and subsequent flushing of the repaired lumen, I was at the ER with a fever of 105 and bloodwork/a CBC looking strongly suspicious for a central line infection/sepsis.<br /><br />The next few days were some of the sickest of my life. This bug was a doozy.<br /><br />I've always been told that central line + fever = ER. I don't EVER get fevers unless I have a serious infection, so there was no 'I'll just wait it out a day and see if it passes' with me - any fever over 101 and it means I am a sick sick girl. <br /><br />This was no exception - at 6pm I was feeling great - made the boys pizza for dinner, tidied a bit, had a good day and felt awesome. At 7pm my temperature was 104 and I was flat out. By 8 I was at the ER with my aunt (Dave stayed at home with the boys - thankfully it was his day off). <br /><br />In hindsight, I've been told that 1) my paranoid freak-out-and-run-to-the-ER reaction and 2) The ER doc's overcautious reaction and immidiate Rocephin infusion (antibiotic) very likely saved my life. The bug that grew in my blood was a gut bug called Ent. Cloacae - one that carries up to a 52% mortality rate once it goes septic - particularly in those with compromised immune systems. Any 'silliness' that we felt around racing off to the ER 20 minutes after I spiked a fever is officially gone as it quite literally made the difference between feeling crappy for a few days and winding up in the ICU (or worse). <br /><br />The experience fairly quickly got my priorities in order. Scarier side effects or not the treatment that is most likely to get me off TPN (and therefor off a central line) is the one we have to go with. <br /><br />I saw Oncology on Monday, had my Vas Cath (large bore central line that goes into the jugular and hangs out of my neck) was placed on Wednesday and my first plasma exchange was on Thursday afternoon. I will do a full round (2 weeks) of the plasma exchanges, staying in the city with my brother and his family on treatment days, and trying to come home on the day in between. Once that is done I will start a 4 week course of chemotherapy. If all goes as we hope, the plasma exchange will put me in remission within about 10 days (this is the 4th round of Plasma exchanges and the past ones have always led to remission after 10 days or so), and the chemo will keep me there for up to (hopefully!) 18 months. At that point when symptoms return, we will once again do another round of the chemo. <br /><br />This is a lifetime - nobody goes into remission forever. the average is 6-8 months, some are up to 18 months. If this works i will be in it for the long run. <br /><br />It's scary as hell. The side effects are terrifying (seriously - and 'terrifying' from the perspective I'm at right now is pretty damn awful). There is still a chance that it won't work. <br /><br />We have to try though - and we're working hard to be optomistic. <br /><br />This weekend I am 'home' - at my parents - my home is too far from the ER for me to be comfortable with the Vas Cath in - it's a massive tube in my jugular that has a habit of occasionally bleeding - bleeding from the jugular is pretty much the definition of 'bad' and not the kind of thing you want happening when you are 15 minutes from a hospital. 'Home' is a few weeks away yet. <br />I'm enjoying my boys for the weekend then back to the hospital Monday morning. <br /><br />Onward and Upward.Keelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com3tag:blogger.com,1999:blog-3322943468198028696.post-90317285677091384162011-05-19T21:29:00.000-07:002011-05-19T21:40:41.472-07:00Down the Rabbit Hole.I talk often of the '2 hour black hole' we live our lives in - we can not plan anything concretely beyond the next 2 hours as things can change just that fast. Yesterday at dinner I was doing great, making pizza's for the boys, puttering around the kitchen, and then around 6pm I stumbled down that black hole. Suddenly started feeling tired and just totally overwhelmed with the idea of getting off the couch. my temp was fine but i felt like trash - figured I had done too much as I went shopping with Dave and did a lot of walking. By 7pm my temp was 102F (39C I think) and I felt like a bag of crap. By the time I was triaged at the ER I was at almost 40C (104F?). Not fun.<br /><br />They got me in really fast (apparently 'central line' and 'fever' tends to earn one a room immediately) and did labs and cultures (from both arms and the line). My white cells were ok (good news) but there was a significant 'left shift' (some sort of calculation they do with numbers of different white cells - a strong left shift almost confirms a bacterial infection somewhere). He sent the cultures and started me on IV Rocephin (once a day IV antibiotic - the 'good' one when it comes to wanting to go home and just pop into the ER once a day for a dose) and suspected we could ride it out at home with the daily abx. <br /><br />This morning I woke up feeling the sickest I have ever felt in my life - shaking chills, very high fever, just really really awful - Dave had get the advil, crush it, and put it through my feeding tube as I was too sick and shaking etc to even do that myself - it was really scary for both of us and I nearly went back into the ER right then. thankfully the advil worked well and I was feeling a bit better. <br /><br />Dave had some lawns to mow and yards to cleanup so my aunt came over to hang out with me (im not allowed to be alone with a potential line infection). Parked my butt on the couch and planned to do nothing but watch TV all day. <br /><br />Unfortunately my body had different plans - I fell asleep at 11am, and woke up at 1 to the phone ringing. It was the ER doctor having a bit of a panic attack. My line cultures had grown gram negative bacteria (haven't asked the do which bug specifically) in less than 12 hours (it's pretty rare for a blood culture to grow anything before the 24 hour mark I'm told). Anyways after stressing very much that I was to basically drop what I was doing and beeline for the ER I got my neighbour to drive me in - thankfully my Aunt was over (thanks Heather!!) and was happy to stay with the boys until Dave was done. Same deal tomorrow - Heather will come at 5am so dave can go to work, then she will take the boys to school and pick them up - Awesome luck she retired a few weeks ago and has her days to herself at the moment - major help. <br /><br />Anyways - the bug they grew is apparently just not possible to eradicate from the line so they are popping me in an ambulance, and taking me to HSC to have my line pulled in the morning. Not sure what the long term 'keep-keely-from-drying-up-and-starving' plan is but if we can at least get fluids through an arm IV I am hopeful I can go home in between doses etc. We'll see how the night goes. <br /><br />Well I'm falling asleep at the computer here so I should wrap this up…<br /><br />I'll update when/if anything changes - in the meantime well wishes/prayers/etc are always welcome. Anyone local that wants to give us a hand in the coming weeks (I'm going to be pretty useless for the next few weeks as I recover - blood infections are not quick 'bounce back' type of illnesses) please either email me, or (likely better) call Dave or my mom and they can let you know if we need anything at the moment - one thing we will likely need is rides into Selkirk a few times a day - I am hopeful we can find a few people willing to help with this so no one person has to drive too often - if you're able and willing to offer rides, please just facebook/email me and let me know what days/times you are available and I or Dave or my mom will get in touch with you as we are going to try to put a 'schedule' of sorts together. <br /><br />Thank you for all the support and help - we appreciate everyone, even if all you're able to do is send me an email - just chatting and keeping in touch makes such a difference! <br /><br />I'll try to update tommorrow - I will be at the city hospital in the morning to have the line pulled and we will make some decisions there about longer term plans.Keelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com1tag:blogger.com,1999:blog-3322943468198028696.post-60407372407760141162011-03-28T07:47:00.000-07:002011-03-28T07:56:09.963-07:00Spring? Seriously?Maybe it's because I 'missed' the fall time completely - or rather enjoyed watching the colors change from my 6th floor window at the hospital - but i am just feeling like it can't possibly be spring already! <br /><br />Our lives have changed SO much in the past year... 2 long hospital admissions for myself, and now I am muddling along on TPN with central lines, and feeding tubes, and all the necessary medical 'stuff' that comes with all that. Between Brandon and I, our med schedule, and the IV and central line care I feel like a full time nurse most of the time. <br /><br />But - we have hit a pretty decent 'plateau'... I am weaning off the steroids slowly as the side effects were too severe to stay on them - and I am feeling the lower doses... my gut, which could handle small amounts of a handful of foods has mostly just stopped again completely... I can put meds through my J tube (So thankful for that - I can put narcotics or nausea medication through it, and it goes directly into my intesting, and is absorbed in minutes so the relief is very fast - if I were to swallow the medicine, it could sit in my stomach for hours before it was finally moved along to the intestines and absorbed... I only use the J tube for meds but it is sooo worth having.) But any attempts to eat food result in pain, nausea, and me looking 8 months pregnant... <br /><br />That said - if I behave and avoid food, I feel pretty good and I'm home with my family so I won't complain. <br /><br />Part of my effort to avoid food has involved me learning how to use the tools in Dave's shop, and making pretty things out of wood! I am going to set up a table at some craft shows over the spring/summer to sell said pretty things - I'm really having a BLAST out there - I've been making trucks of all sorts for the boys (much to their delight!) and boxes, necklace holders, and other random fun things... using up scrap wood and having lots of fun doing it :) <br /><br />Brandon is doing GREAT. I cannot state that enough... he is in such an awesome place medically right now - strong, healthy, happy, smart, and stubborn as ever (we encourage this - he will need it in the long run... though it can test my patience... LOL!) <br /><br />Tyler too is doing wonderfully - he adores kindergarden and as of last week he can read!! It's slow work and he has to sound stuff out carefully but he can do it!!! Brandon is SO close - we will be very excited when we have 2 readers on our hands - I don't have to explain how Brandon's life will be transformed by the ability to read and write to us... I am very eager to 'read' what he has to say... :)<br /><br />Well that's our spring update... I will attempt to be more consistent with updates... usually no news is good news!Keelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com1tag:blogger.com,1999:blog-3322943468198028696.post-24932706062581417462011-03-03T23:05:00.000-08:002011-03-03T23:08:47.312-08:00KarliI wanted to share quickly my cousins blog adress. <br /><br />http://hurrybeforeweallcometooursenses.blogspot.com/ <br /><br />Karli is my young, amazing, brave, awesome cousin who just returned to South Africa for the second year to volunteer at an orphanage. (after months of coming here and helping us with the boys and my hospital admission etc<br /><br />She is amazing, her stories are amazing, what she is doing is amazing, and I'm excited to read of her impending adventures. <br /><br />Karli you always inspire me to do better - to look around me, and do what I can to make the world a little bit better. At home or in Africa - you are doing your best to make this a better place in teh way your heart is telling you to. Thank you for being so awesome my friend! <br /><br />KeelyKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com2tag:blogger.com,1999:blog-3322943468198028696.post-37078356079094193882011-03-03T08:37:00.000-08:002011-03-03T08:43:10.615-08:00It's March!I can't believe how fast this year is going by already!<br /><br />The past 2 weeks have been good ones. <br /><br />I'm in a place where things are stable, pain is managed, symptoms are under control, and my energy levels are fantastic (apparently getting enough calories makes a person feel really really good!).<br /><br />I'm on pretty heavy doses of narcotics and antinauseants to BE in that place, but that's a small price to pay.<br /><br />Right now I'm still getting about 80% of my nutrition via IV TPN, and almost ALL my fluids that way. I hook up in the evening to 1L of saline with sugar in it, run that in over 2 hours, then switch to the TPN (nutrition) for 12 hours. <br />Most mornings I'm supposed to hook up to 1 more litre of saline with sugar, but i've been skipping the morning litre as I am drinking some during the day, and by the AM I just want to be 'untied'. <br /><br />The boys are doing fabulously, so I'm very greatful for that!!<br /><br />This week we will be making some decisions around the 'next step'. We should have had this sorted out weeks ago, but i have been letting things slide as I'm really enjoying just 'being' for a while. <br /><br />But - it's time to start moving forward - I have been 'coasting' on high dose steroids for a while now, and my body is suffering for it - the doc diagnosed me with 'steroid induced diabetes' this week, and I'm very swollen from the prednisone - it's time to start looking at other options. I suspect the next step will be Rituximab - a chemotherapy drug - which is a bit scary, but can work wonders for some people. <br /><br />fingers crossed! <br /><br />I'll update when I have news!<br /><br />KKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com2tag:blogger.com,1999:blog-3322943468198028696.post-79576757548084189202011-02-18T18:33:00.000-08:002011-02-18T18:48:51.343-08:00Mid Feb UpdateWow it's been way too long since I've updated this!<br /><br />The past several weeks have been a roller coaster but we are now on day 10 of a pretty quiet streak. <br /><br />In a nutshell I have spent far too much time in ER's and OR's on account of severe allergies to the antiseptics they had me using on my central line - lost my PICC line, had a tunneled line placed in my chest again and now that we are using the right tapes and the right antiseptics (Iodine - the downside is my chest is dark orange all the time now - but at least it's sterile and not hivey!) things have settled down nicely. <br /><br />I have gained a bit of weight (yay!! mostly fluids - but there is some 'real' weight in there too we think!), and the massive doses of IV steroids they had to use to treat the allergic reactions (basically it would start as a few red marks around the dressing, and within hours I was completely covered in hives and my mouth was going numb - it was dramatic!!) have actually stirred my gut up a bit and I've been able to tolerate some tube feeds, and some oral food! Nowhere near enough to go off TPN or even really cut back much, and I cannot drink enough to stay hydrated, but it's a very small improvement - after nothing but decline, a very small improvement is welcome. <br /><br />All that said - I am still totally dependant on having people around. I cannot drive more than up the block to the school and back - and even that has to be carefully timed with my meds. I am on lots of narcotics and antinauseants just to be able to function, so my ability to think rationally and stay focused etc is limited - While it's hard financially and emotionally to need Dave home full time right now, it is necessary. <br /><br />We have been doing odd jobs (making perogies for family, knitting, sewing, Dave is clearing snow, shovelling roofs, odd jobs etc) when I'm well enough to prop up our income - but at this point Dave is on the hunt for full time employment that is flexible enough to have him here when I need him. A tall order it turns out.<br /><br />That aside - I am doing well. <br /><br />I am hopeful. The fact that the IV steroids (and massive doses of oral prednisone I'm continuing on) did anything is extremely encouraging for future improvement. <br /><br />My GI appointment this week was a positive and negative one - but we are focusing on the positive (that there is hope for some improvement, and that right now, the TPN and fluids are keeping me strong, giving me energy, and keeping me at HOME). The downside is it's clear my gut is not happy. I start the day out look somewhat OK, and by dinner time I look 6 months pregnant. No exaggeration - I am in my maternity pants and was asked when I was due the other day. It's shocking really. The GI said he has no idea if or how much things will improve but he told me to stay hopeful. So I will. <br /><br />We have a few 'next steps' for my treatment. <br /><br />1. Pulse Steroids (IV massive doses, every few weeks) is one option - good: it works. Bad: LOTS of side effects (bad ones)<br /><br />2. Rituximab is another option - it's a Chemotherapy drug, and it is also brutal - but can be miraculous for my condition sometimes. <br /><br />3. Mayo Clinic - at this point Mayo is more for academics sake - we have local docs willing to treat my autoimmune condition, using protocols developed at Mayo. The Mayo neuro team is booking about 5 months away so I wont be seeing them anytime soon - but my local docs are going to go forward with treatment trials and hope for the best. <br /><br />4. My family and friends have been nothing short of amazing. You all know who you are, and you all need to know I am humbled and proud to know you and call you family. <br /><br /><br />Right now, Today, I had a good day. My family is going to bed under one roof tonight, and for that I'm thankful.<br /><br />Thanks for checking, <br /><br />KKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com0tag:blogger.com,1999:blog-3322943468198028696.post-55475192971892277872011-01-30T20:38:00.001-08:002011-01-30T20:52:10.703-08:00Rollercoaster only begins to describe.Sorry for the lack of updates, getting back into the home groove really eats up the time!<br /><br />I was discharged in early January with a PICC line (a central line that starts in the arm and threads to the heart) after I lost my chest line to infection. <br /><br />The PICC worked alright with a bit of trouble that required daily dressing changes, but the TPN end of things was going very well.<br /><br />Unfortunately a week ago it became apparent that the skin around my PICC dressing was no longer just irritated, but very infected. <br /><br />Last Sunday I was started on 2 IV antibiotics, requiring 3 ER trips daily at about 2 hours a time. the alternative was admission and we all preferred me not being admitted. <br /><br />So we limped along on this schedule until Thursday when it was decided that the infection was not improving, and I was also clearly allergic to 2 of the last 'big gun' IV antibiotics left to work with (clyndamycin and gentamycin). <br /><br />Thursday night saw me in the City at the ER, my PICC was pulled, I was given a monster dose of solumedrol, and put on high dose prednisone to try and wrestle the allergic reaction down. <br /><br />In a long, stressful and rediculous way I found myself racing through a snowstorm on the highway on Friday morning to try and get to the hospital in time for a cancelled spot on the surgical list to get a tunneled central line put back in my chest. Without that surgery I was going to have to be readmitted for the week until they could get a permenant line in me again. <br /><br />But - in a bizarre twist of luck and fate, by noon on Friday I had my line in my chest, and was home that night with no hospital admissions. <br /><br />I was put on an antbiotic I'm NOT allergic to, and that along with round the clock benadryl and high dose prednisone and I'm finally on the med - the infection on my arm has cleared up and I am getting to feel a scootch more human. my new antibiotic require only 1 infusion a day too which is awesome. <br /><br /><br />Now for the roller coaster part (yea - that was only one aspect of our rediculous week)<br /><br />Both the boys are sick. Brandon tonight spiked a high fever after finally going 2 days without one... it's a nasty bug that has been hanging around for a week now. It's wearing him down pretty hard. <br /><br />As we limp along on the 55% income that is provided by EI (for which we are VERY grateful) not surprisingly things start breaking. Expensive things. <br /><br />Bills come in because of mixups on the phone companies end (they have admitted this and are in the process of correcting it) that randomly take 1100$ out of our bank account. <br /><br />On top of all this we are all waiting on egg shells to find out just when I will be getting my appointment at Mayo, and all the general discouragement that comes with facing the reality that I am very sick and there is not magical cure in site. <br /><br />Up and Down. <br /><br />Hopefully tommorrow will be more up.Keelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com0tag:blogger.com,1999:blog-3322943468198028696.post-29468534219378492762010-12-28T17:39:00.000-08:002010-12-28T18:11:28.046-08:00Rock Bottom?I sure as heck hope so. <br /><br />First I'll start with the great portion of this update. On Friday I was able to go home for a 2 day/overnight pass for Christmas with my family! We did the Christmas Eve thing, Had a blast with the boys who were totally wound up for Christmas (yet fell asleep fast and without complaint - I think the energy put into being excited wore them out!). <br /><br />Christmas morning was a blast - the boys let us sleep in until almost 8am, then tore through their presents fairly quickly. The only complaint was from Brandon and it was that his DS was not pink. He's going through a 'pink' stage... He got over it pretty quick when he realized the DS had a camera and voice recorder built in - these are endless sources of fun for the boys. <br /><br />After gifts and croissants (my Aunt Patti made them the day before, we left them on the counter to rise overnight and popped them in the oven when we got up - they were FANTASTIC... Patti makes the BEST croissants and they have become part of our Christmas morning tradition over the past few years!), we packed up and headed to my parents house around 11 (well Dave and the boys did - I had to make a pit stop at Gimli hospital for my IV antibiotic dose - the 'deal' I had to make with the docs to be allowed to go home for the night). at 12:30 we all had apple pancakes, smokies and ice cream (this has been my Christmas morning breakfast for as long as I can remember - its the only time of year we have them and the tastes and smells are full of nostalgia for me... I only managed a few bites of each, and paid quite dearly pain wise for them, but it wouldn't be Christmas without it. After presents at my parents house, (the boys again got spoiled rotten - as did I and Dave) we all packed up and headed to my Aunt Heathers for the family Christmas dinner... lots of extended family was there, the boys were playing in the basement with the bigger kids (and having a total blast) while the adults visited and hung out upstairs. It was precisely the way I wanted to spend my Christmas, and I left at about 8pm feeling completely content with how it went - it was perfect. :)<br /><br /><br />So that was the good part. <br /><br /><br />Unfortunately I left out last week and this week. Last week I ran fevers for most of the week - not terribly high, but high enough to concern them. The big worry of course is a central line infection so they ran blood cultures, but nothing grew. Since I was already on antibiotics for the C. Difficile infection I had a few weeks ago, they didn't expect anything to grow regardless. We waited a few days and on Wednesday I got a fairly angry looking spot about 2 inches above my central line site, right where the line tunnels under my skin. The docs saw it and had a fit. They drained it and culured it, and my line site, and my blood again - but again, since I had antibiotics in my system the cultures cannot be relied upon. They were all negative but they felt confident I had a 'tunnel infection' (an infection 'around' the tube where it tunnels through my skin). These are notoriously difficult to clear, and generally the only option is to pull the line (Arg!). <br /><br />They gave it a good go to try and save the line, put me on Vancomycin (big gun antibiotic), and Cephtriaxone (also a big gun) to keep their bases covered. The fevers actually stopped on Friday and I was doing alright. The morning of Christmas day though I started running a temp again. I stubbornly ignored it and took tylenol all day, however by the time I got back to the hospital I was quite hot. <br /><br />Sunday brought higher and more miserable temps (103-104) and my line site was looking worse so the decision was made to pull the line. That happened this afternoon. I now have no central line, and no way to get TPN - they are giving me sugar water through a basic peripheral IV, but they cannot run TPN through it, so Im basically getting nothing for the next few days. <br /><br />After a few days they will put a PICC line in (the central line that starts in the upper arm and threads into the heart) and I will be able to go back on the TPN etc, so that's good at least. <br /><br />Just to ice the cake, in the middle of all this I was re-diagnosed with C. Difficile, the intestinal infection I had a few weeks ago has come back with a vengance. So I am now on a THIRD antibiotic to treat the C. Difficile. <br /><br />My discharge date went from last Friday to maybe this Wednesday, to 'who knows' at this point. I'm pretty discouraged and frustrated that every time we seem to be making progress to getting out of here something happens to set things back a bunch. <br /><br />All of us are pretty discouraged. The boys are sick of mom not being home. I'm sick of not being home. Dave is tired of being a single dad (a role he has filled incredibly well I must say - he has not only 'managed' to be a single dad for 3 months, but he has managed to make it 'fun' for the boys, kept the house in order, and overall has just done an amazing job of holding down the fort. I am so proud of how well he is doing, and how lucky I am to have married a man I can leave completely in charge of the kids and the house without an inkling of concern over how he would do. <br /><br />So at this point, discharge has been pushed to 'who knows'. Im on 3 IV antibiotics that will hopefully get things in order. Im still anemic and I suspect well on my way to another blood transfusion. My gut is a total mess from this infection. I'm needing higher and higher doses of narcotics just to manage the pain. My temperature is still spiking very high tonight. I have no line to get nourishment into me, and now have to face another procedure in radiology to place another line (something that is always difficult for me as my blood vessels are evil). <br /><br />The good news is I am cultivating some mad Crocheting skills - I have mastered hats (made a good 2 dozen so far), tank tops, and now I am onto animals - Brandon has a new moose and Tyler has a new alien... they are pretty slick if I say so myself. <br /><br />Well sorry for the big pity party. It's hard to stay positive when all you get is crap thrown at you day after day. I know this will turn around and soon all of this will be a bad memory. but right now all I can see is what's in front of me, and I don't like it. <br /><br />Tomorrow will be a new day. <br /><br />Thanks for checking, <br /><br />KeelyKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com8tag:blogger.com,1999:blog-3322943468198028696.post-25708130521411833312010-12-22T18:59:00.000-08:002010-12-22T19:44:27.420-08:00I think I was Hitler in a past life.Well at 11am this morning things were looking fantastic. TPN training was going beautifully, and the nurse announced I could get discharged on Friday. <br />Supplies were delivered to the house for home TPN. Discharge papers were drawn up. Follow up appointments were being lined up. Life was looking pretty peachy. <br /><br />Then by 12:30 pm I was diagnosed with a central line tunnel infection, plans were being drawn up to pull my central line and maybe try replacing it with a PICC line, they decided they have to start me on an antibiotic that I'm severely allergic to (IV Vancomycin), since it's the only one appropriate which means they would have to pretreat me with IV benadryl which according to my body is like extremely potent LSD and renders me a useless jibbering pile of nonsense for 6 hours. <br /><br />Discharge plans turned to smoke. <br /><br />Throw in the fact that Dave spent the day at home quite sick with a GI virus, and it just rounded out the day quite nicely. <br /><br />So yea. <br /><br />The infection I have is not in the blood yet (that we know of - blood cultures are pending), but rather is in the tunnel that my central line goes through from where it goes into my skin, to where it enters my large blood vessel. The point of a tunneled line like this is so that there is some space from the site where the line enters the body to where it enters the blood vessels, so if there is an infection, it has some space between the exit site and the blood vessel. So in that respect the tunnel did work well - it gave us time to catch and respond to the infection before it made it to my blood stream and got really serious. <br /><br />The down side is the vast majority of the time, tunnel infections aren't treated in a way to save the line - usually the line is pulled and the infection cleared before a new line is placed (new surgery, new site). <br /><br /><br /><br />So at about 2pm this afternoon I was prettty furious with the whole situation. It feels like we get 1 step forward and slide 2 steps back every time we try to make progress and it was getting very frustrating. <br /><br /><br /><br />Since then things have gone a little smoother. My first dose of Benadryl and Vancomycin went very well and I didn't react at all to the Vanco. The benadryl, as usual, stoned me up good, and after a nice fun trip for an hour or so I passed out cold until a little after 6:30pm. Aside from horrible zombie dreams (seriously vivid... not cool) it was a good nap and I woke up in a bit of a better place. <br /><br />the plan now is that Infectious Diseases will come assess me tommorrow hopefully and make a decision on whether or not to pull the central line. If they do pull it, I will likely have a PICC line placed tommorrow to take it's place. If they don't pull it, then we will hope the abx clear the infection and play it by ear.<br /><br />In the meantime none of this necessarily writes off my chances of a Friday discharge. I will still need IV antibiotics twice a day, but I could theoretically go back and forth to the local hospital for those once I"m discharged. <br /><br />At this point it's all very much in the air - which I don't do well with - emotionally I need a plan so I can just relax. <br /><br />But I'm learning to be 'ok' with not having a plan. I realise sometimes there isn't one and that has to be manageable too. <br /><br />Trying very hard to be 'Zen' about it all. <br /><br /><br />Any way I cut it, it sucks big time. <br /><br />But it could always be worse.<br /><br />KKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com2tag:blogger.com,1999:blog-3322943468198028696.post-81407391200807162372010-12-21T20:29:00.000-08:002010-12-21T20:42:31.230-08:00The Club Nobody Want To Join.I'll try to make this brief but informative. <br /><br />1. I started my home TPN training yesterday and it is going great! <br />2. If training continues to go well I *MIGHT* (saying this sooo quietly) be discharged on Friday!<br />3. This weekend my doc gave me 'NPO' order - no food or drink by mouth. with the exception of lifesavers and jolly ranchers. This has resulted in 2 distinct things:<br /><br /> ~ My symptoms (bloating (as in 'hey lady the maternity ward is 2 floors down' level bloating), pain and nausea) are improving. <br /> ~ I am turning into more of a food-crazed zombie than I was before. I've reached the point where the idea of a platter of raw onions and mushrooms (the 2 foods I despise the most) sounds positively mouthwatering. In spite of the simplicity of the concept (don't eat or drink... easy enough) this is one of the hardest things I have ever had to do... It is very very very hard to refuse myself food or drinks... it gets to the point that all I can think about is food. It makes me very sad to think that I may never be able to eat or drink again... While I am glad they have ways to keep me nourished and functional without my having to eat/get sick... I did not anticipate the sheer difficulty of refusing a body (however broken) of the joy of eating. I am able to suck on lifesavers and jolly ranchers at this point without too much trouble (though I think I may have reached even their limit today as I've been pretty sick tonight... apparently 'a few hard candies' does not mean 'go buy out the drug store downstairs of lifesavers and eat all 145 of them within 3 hours'. They could have mentioned that. <br /><br />4. The boys Christmas concert was last night and thanks to some serious logistical fenangling I was able to make it and it was fantastic... Brandon had a blast on stage, and Tyler, our free spirit, was dancing up a storm (while everyone else stood stalk still... ) twirling and ducking and swinging his arms in the air.... cutest. thing. ever. That boy has no fear, and is completely at ease with himself... I find myself seriously considering homeschooling him next year because I loath the idea that he would have that spirit stifled by the harsh realities of elementary school social life. :( <br /><br />5. I recieved a scholarship last week. Based on academic merit, and financial need, I was given a bursary to purchase a Macbook laptop that I had quoted and applied for back in the fall - it's a technology grant for students with disabilities, my case being that I need a laptop in order to continue my schoolwork while I am inpatient since this looks to be a semi-regular occurance in my future. I had pretty much forgotten about it as it had been so long since I had applied and then it arrived! So this weekend I picked up a brand new MacBook Pro and I am absolutely in love with it!!! (And the high speed internet signal it can pick up from the hot spot downstairs!)<br /><br />I think that's most of the big news... so much for short... <br /><br />Thanks for checking!<br /><br />KKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com0tag:blogger.com,1999:blog-3322943468198028696.post-56145582137838861702010-12-17T05:50:00.000-08:002010-12-17T06:07:09.263-08:00The Roller Coaster.Here's how the last few days have played out:<br /><br />Wednesday: <br /><br />1. Got my official training dates of Mon and Tues (20th and 21st) and noise was made of a Tues or Wed discharge (just in time for Christmas!). <br /><br />2. Got moved to a new room that was in a better part of the ward, has a better view and was nice and quiet. <br /><br />3. Found out I won a $2500 technology scholarship from school to purchase a laptop so I can continue my schoolwork while in hospital. <br /><br />Overall Wednesday was awesome! <br /><br />Thursday (aka - reality check):<br /><br />1. Found out everyone who suggested I might go home next week did not know what they were talking about and the supplies and such needed for me to go home will not be delivered until *maybe* the 29th of Dec but with the holidays, most likely not until the 6th of January. Until then I sit in this hospital and wait. <br /><br />2. My gut has launched into a seriously painful stage of 'who knows what's wrong now' and I spent most of the day hawking narcotics that still barely worked. Today we have to figure that out.<br /><br />3. at 10pm I spiked a fever that earned me a full workup (blood cultures, labs, urine, etc etc. The fever kept up all night and I still feel like garbage this morning. <br /><br />4. I developed what looks like a skin infection on my ankle last night that they are going to drain this AM and is hopefully the source of the fever (though that's doubtful). <br /><br />Amazing how quickly things can go from 'awesome' to 'are you kidding me??'. <br /><br />So for those of you that pray/hope/request from the big cahoona... anything would be appreciated at this point. Specifically this fever needs to go away so I can go home and see my family on a pass this week. And they need to figure out a way to get me out of here before Jan 6th as the whole 'nobody in our family has a job right now' thing is becoming problematic (while we have had terrific support from family and friends, it's still doesn't replace a full time income), and until I'm home nothing on that front can change. (and even once I'm home we still have a whole host of issues to sort out before my other half can actually go to work outside the home again.) <br /><br />So yea - a teensy bit of stress/frustration/sadness here. <br /><br />Trying to wrap our heads around me being in hospital for Christmas as that is apparently going to be the case (though I should get a pass for Christmas Eve and Day so I can spend them with my family at least). <br /><br />Going to attempt to squeeze a whole seasons worth of traditions into a few day passes this weekend. <br /><br /><br />And on the bright side I think I will go computer shopping on Saturday after we drop the kids off at my parents house for the night! Nothing like a new toy to brighten up a crappy week.Keelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com3tag:blogger.com,1999:blog-3322943468198028696.post-64828582103015027372010-12-11T18:08:00.000-08:002010-12-11T18:27:07.730-08:00Saturday Night MusingsNot much new - we are tinkering with my pain meds and nausea meds to try and find a decent balance that will allow me to go hom comfortably. <br /><br />Im currently getting Dilauded (Hydromorph - a purified form of morphine) every 2 hours but since that isn't terribly great to keep up at home we decided that we will try a fentanol patch on Monday - the patch will give me continuous narcotics and I will take the hydromorph as a 'breakthrough' pain med when the pain is bad enough that the patch doesn't cover it.<br /><br />Lots of drug juggling but we are getting to a point where we have a good balance. <br /><br />Similar deal with the nausea meds - I am now on 3 different nausea medications (all IV) and was still getting nauseas so we played around with my oral meds and changed them to IV to see if that helps the nausea - it's really just a game of 'how can we keep me comfortable and functioning until I get to Mayo in January' - making sure my Christmas is as comfortable and pain free as possible. <br /><br />Which sounds like a good deal to me. <br /><br />I'm feeling a little overwhelmed wiht all the medicine, and hate to be on it all (especially since I was off everything in August... :( ) but at the same time i know I need it. <br /><br />So life goes on. <br /><br />The C. Diff treatment is going well and it appears Im recovering. I can have visitors without precautions on Monday it looks like. So that's fantstic!<br /><br />It looks like I'll likely need another blood transfusion this week as my hemoglobin is dropping pretty quickly. This is (in a twisted way) good news as it means my immune suppressant is doing it's job - we just have to hope that it's killing off the bad cells along with the good ones. We will know in good time!<br /><br />Well I'm typing this with my eyes closed now - the IV gravol I just got has officially made 8:30pm bed time for this Saturday night! <br /><br />Thanks for checking,<br /><br />KKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com0tag:blogger.com,1999:blog-3322943468198028696.post-3813785936609659942010-12-08T15:57:00.000-08:002010-12-08T16:24:36.487-08:00Isolated.Yesterday afternoon I tested positive for Colostridium Difficile (C. Diff). It's a hospital aquired infection that people can get when they are on antibiotics, or are immune suppressed - I am both. <br /><br />It's a nasty one. <br /><br />It's also one that earns you isolation and means I cannot be around Brandon, or anyone who cares for him - so no visits home, and no family visiting me here. <br /><br />It's treatable, they caught it early, and I am on the anitbiotics to treat it and they *seem* to be working so far (the docs say not to get too excited yet - because I'm immune suppressed it's still anybodies game for a few days yet). But I still have to keep my distance from family until next week. <br /><br />So just another stroke of bad luck to throw onto the pile. <br /><br />Thankfully (in a wierd twisted way) my roomate is presumed to have C. Diff as well as she is symptomatic - while unfortunate for her, it means they will not isolate me in a single room, and split us up. At this point the only thing keeping either of us sane is the fact that we have eachother - we get along fantastically, we spend our days visiting, joking, knitting and watching movies... splitting us up at this time would be a nightmare for both of us. <br /><br />So at this point both of us are in 'lockdown' - any docs or nurses coming into our room have to wear gloves and gowns, and we are not allowed to leave our room without gowns and gloves. <br /><br />It's a good arrangement and we are very thankful that we don't need to be split up. I would go nuts in a single room all alone. :(<br /><br />Well thats today.Keelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com0tag:blogger.com,1999:blog-3322943468198028696.post-14530178550249788612010-12-06T21:18:00.000-08:002010-12-06T21:40:14.296-08:00December 6th LowdownWell it's been eventful. <br /><br />I will try to make this a 'quick' version of the past week. <br /><br />We have a date for TPN training (this is where they train me to do the IV nutrition stuff own. I cannot be discharged until this is done.) - it should happen the week of the 20th of Dec. So if the stars line up I MAY be home on Christmas eve. <br /><br />We are working on hopefully getting a home nurse lined up to do the TPN at home - if this works out I might be able to go home around the 15th and do the training as an outpatient. I have no idea if this will happen but time will tell. <br /><br />Regardless I am mentally ready to be inpatient over Christmas. <br /><br />I have been able to go home on day passes to visit my boys regularly so that helps everyone (except Dave who has to do all the driving - though he's been awesome and doesn't seem to mind too much). Last night we had Brandon's 8th birthday party and I was so happy to be able to be there! <br /><br />It was a close call - my day pass yesterday was cancelled because I spiked a fever. I have been running fevers since Saturday afternoon and they have been playing the 'name that infection' game trying to figure out the souce (the worry with a central line is of course a line infection which can be VERY bad very fast). Thankfully today the source reared it's ugly head and I have a full blown gut infection - tests are pending to determine whether it is C.Difficile (which would suck - but would still be treatable) or just a garden variety virus, either way my gut is even less happy than it was before and I am in a world of hurt today. Loving the morphine. <br /><br />On Wednesday (I think?) I had a blood transfusion because my hemoglobin was 74 (7.4 in US terms) and I was pretty symptomatic - turns out my iron levels were very low - they figure the anemia (low hemoglobin) is a combination of the low iron, and bone marrow suppression from my immunosuppressant medication. <br /><br />Friday I had an infusion of Iron Dextran - IV iron - to beef up my iron stores. <br /><br />The blood transfusion was amazing - night and day - my cheeks are pink and I feel fantastic!<br /><br />I am currently looking very chipmunkish - and I have gained 10lbs in the past 2 weeks on account of fluid retention - my Albumin levels are low (it's a protien and levels drop when you're starving) and apparently this causes fluid retention in the tissues and leads to a puffy face (and puffy everything!). It makes me look healthier - but it's an illusion apparently. <br /><br />To round things off it was decided last week that my autoimmune disease has indeed relapsed once again. I started the plasmapheresis treatments for the 3rd round today. <br /><br />If this round of treatment does not result in a 'sustained remission' (meaning I dont relapse for at least a few months) the hemotologist wants to move onto a med called Rutuximab (not sure thats spelled right) which is a chemotherapy agent that works very well with conditions like mine apparently.. <br /><br />So we still have lots of options which is reassuring. <br /><br />I beleive that is all -- as if it's not enough... <br />as I said - eventful! <br /><br />Well off to sleep - hoping for a restful day tommorrow... <br /><br />KKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com1tag:blogger.com,1999:blog-3322943468198028696.post-66059137344548143212010-11-25T19:56:00.000-08:002010-11-25T20:02:22.966-08:00Not much newWell the lack of updates are simply because there is not much to update. <br /><br />I am still in the hospital, and the word on the street is I could be here for several weeks yet. Possibly for Christmas. <br /><br />Apparently it takes a very long time to get home TPN/Hydration organized, and right now the department is going through staff changes, so the wait is even longer than normal. <br /><br />Which means I sit here in the hospital. It's pretty uncool.<br /><br />Dave is home with the boys, he's off work on leave because I'm sick, which helps with childcare alot. <br /><br />I've decorated my room with Christmas decorations, figure I may as well settle in. <br /><br />Trying to make the best of it. <br /><br />They are letting me go home on day passes every couple days which really helps the morale... <br /><br />At this point im really missing my boys though. visiting every few days doesn't quite hack it. <br /><br />Health wise all is the same. I'm still waiting to get the date for Mayo Clinic - should get a date soon as the Manitoba Health funding approval came through this week. now we just need the date!<br /><br />hurry up and wait. <br /><br />Wel I'm off to bed now. Hoping tommorrow is productive?<br /><br />KKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com2tag:blogger.com,1999:blog-3322943468198028696.post-31785486926166668582010-11-20T10:16:00.000-08:002010-11-20T10:34:11.869-08:00Things are looking up!Well after weeks of pain and increasing morphine doses and test after test coming back normal with no explanation for the pain the docs decided we had to pull the feeding tube and let it heal and start over. (ugh!)<br /><br />At my insistence they agree to at least TRY a different type of tube (there are different styles of feeding tubes - some are held inside the stomach with a 'coil' in the tubing (that's what I had) and others are held in the stomach with a balloon filled with water. <br /><br />Friday morning I went to the IR suite and had a ballon style Mickey Transgastric Jejunostomy tube placed and 6 hours after the surgery it was very clear that was our answer - the pain is GONE and continues to be GONE today even with rapidly decreasing doses of morphine. <br /><br />So that's the good news of the week! <br /><br />Now we are just waiting on me getting trained to do the TPN at home then I will be out of here!! <br /><br />Unfortunately there have been staffing changes etc with the home TPN crew so they aren't really sure when they will be able to train me at this point. They are hoping this week but it may not happen till next... which is supremely discouraging. <br /><br />But - I can at least start going home on day passes, and coming back for TPN overnight. We will see how the week plays out. <br /><br /><br />Things are looking up :)Keelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com3tag:blogger.com,1999:blog-3322943468198028696.post-5442331662855231952010-11-16T14:55:00.000-08:002010-11-16T15:09:26.764-08:00Where things are atWell things have been chugging along here. <br /><br />We have come up with a good morphine/anti-nausea med schedule that is controlling the pain very well so that is a relief. Unfortunately I have the metabolism of a mouse so it means small doses of morphine every 2 hours by IV - but thankfully since I am in hospital the nurses just do it automatically and I don't have to remember anything... remembering to blink is hard enough for me - I can't imagine remember a med schedule that involves 'every-2-hours' of anything. <br /><br />So the good news is I'm officially 'pain-controlled' which is a very big step. <br /><br />The down side is that's only half the equation. <br /><br />I had my hissy fit yesterday about the lack of an explanation for the pain. <br />I had a second hissy fit today (OK maybe not - I have a new attending and he's very pretty - so my hissy fit might have been more like me drooling and saying 'yes doctor' while batting my eyelashes - but the good news is the new attending is very proactive and wants to get to the bottom of this, so my inability to stop staring at his jawline was likely not too detrimental to my care). <br /><br />The docs all agreed this morning that it's time to ramp up the investigation and figure out WHY I am in so much pain (that only took 2 weeks). <br /><br />So this morning they did more labs, and it turns out my bloodwork is suspiciously looking 'infectious', and 'progressively infectious' at that (just meaning that my blood cells have gotten more and more unbalanced over the past week - they are not totally outrageously abnormal yet, but he said the 'trend' is definately pointing towards an infection that is going on). So they finally bit the bullet and ordered an abdominal CT scan today. They are specifically looking for an abcess in my abdomen, likely caused by the tube. This would be 'good' in that it's a cause we can treat. This would also not be unexpected as I am on immunosuppresants, so certainly an infection would not be a surprise. <br /><br />I didn't think I'd say I was 'hoping' for an abcess, but at this stage in the game, if it is NOT an abcess, I don't think they have any clue what to do next. <br /><br />So fingers crossed.. <br /><br />Otherwise things are plodding along quite well. <br /><br />Dave is home with the boys full time and I think it has made a HUGE difference for both him and the boys. The stress of child care is gone and the boys have their dad which they desperately need right now. <br />The boys are doing surprisingly well considering they have been sans-mom for the better part of 2 months now. We talk every night on speaker phone which helps, but it's not the same as having mom. That has been very hard on all of us - I miss being a family. I cannot wait to get home and be with them every day again. But the boys have done very well in spite of it. I think largely because of family support - they have had my parents and Dave's parents and other family members helping out so much and because of that help we have been able to minimize the disruption to their normal schedule, which helps tremendously in keeping them calm and happy. <br /><br />So that is a huge relief... <br /><br />Life goes on. <br /><br />My central line went in yesterday, it was a breeze thankfully - so I now have the central line (Hickman) that comes out of my chest just below my collar bone (no more scoop neck shirts unless I want to scare everyone), and I still have my large bore central line (Vas Cath) that comes out of the side of my neck (gotta find some turtle necks!). Throw in the feeding tube, and the implant in my heart from when they repaired the hole and the running joke is I am turning into robo-cop.... I am wondering if they can implant a lighter in my pinkie finger next time their mucking around with me. <br /><br />But the central line is a big step to going home!! I should start training on how to do the TPN and line care this week, and if we can get the pain figured out and dealt with I might get to go home late next week!!! (that's a big might - but I cant stop myself from getting excited by it!). <br /><br />Mayo we are still waiting to hear from. The ball is in their court and we are waiting on an appointment date now. Could be next week, could be next year - no clue at all... I will start pushing them to followup later this week if we don't hear from them. <br /><br />Progress is slow - but it's progress. We're going in the right direction. <br /><br />Thanks for checking... <br /><br />KKeelyhttp://www.blogger.com/profile/10935908077063760125noreply@blogger.com2