Rocket Dog Molly

Just a quick note today. Made it through the concert pretty well (except for bleacher butt and a backache which I attribute to the chemo aches) but I think the packed-to-capacity seating and the heat got a little the better of me by the end. This was the first time ever they had grades 5 through 8 concert all on one night and I think they are discovering they have a few more kids/family than they realized for our BIG NEW middle school. Hah! Was a little unsteady on my feet afterwards so was ready to get home. Was of course very proud of my drummer girls and all of the other musician/singers extraordinare! Am holding okay this morning but had another night of sweats/chills and pretty much restless from 3 am on. I am discovering that daytime TV really is the best sleeping time for me. Big surprise huh? I really am NOT a closet Jerry Springer fan – I swear. Please forgive today’s brevity – am expecting another home health visit in a bit and would like to get a few thank you notes out before my big siesta. Thanks again for all of the messages – it helps keep me from feeling like I’m stranded on an island somewhere. Actually, this does kind of feel like sending a message in a bottle!!

Love to you All,
Lisa

Well, I don’t really have anything to earthshaking to report this morning but was here and thought I would just say hey! Am still feeling pretty okay – just a little tired and maybe a little shaky. Have lost about 15 pounds so far – of course the fluid weight counts for some of that. Good Lord – I haven’t weighed in at this amount since my earlier 20’s. Take that middle age spread!! Rube got me a wedge pillow so that I could elevate my head and maybe actually sleep in a bed for the first time in weeks! Still not able to lay flat or on my side for any length of time. Pillow worked pretty good until about 4:30 this morning when my back decided it had had enough so it was back to the recliner with my bad self. Think I just need to reconfigure the other pillows on top and we may have a go! It’s weird – I have always been the night owl but I find myself going out before or at the same time as everyone else now. The difference is I have the 2 and 4 am night sweats/chills every night so sleep is more interrupted now but am feeling okay in spite of still getting up at 6:00 in the morning. I strongly suspect that there will be more daytime lousy TV naps coming soon to a theatre near you. I keep waiting with one eye open for a change or increase in effects from the chemo but so far, it has spared me. I only hope to get to the Winter Concert tonight – they are performing a Christmas “Stomp” – can’t miss watching my drummer girls play the buckets now can I? I am thinking round two may gang up on me a little more and possibly kick my butt but ya know, what can it hurt too bad – the girls will be home on break, we always spend most of Christmas in our pajamas – what the hey! And I just have to say I am really tired of this irritating computer kicking me out before I am finished with what I am saying. It’s like having a piece of technology telling you to shut up, you’re done now. Aaaargh. Anyway, ’nuff said. I guess I really am done now!

Love,
Lisa

I can’t believe I am sitting here at 6:30 in the morning writing. I fell asleep about 7:30 last night, slept through It’s a Wonderful Life (so I STILL haven’t seen the whole movie, although I KNOW there will be another 24 hours of chance!), woke up at least 2 or 3 times with night sweats and now I can’t sleep anymore, at least not right now. The house is quiet so I thought I would fill you all in on round one of chemo. And YES I KNOW the latest title bears explanation first. At some point during my 24 hr stay to achieve a 5 to 6 hr procedure, the thought occurred to me that the chemo was kind of like an exorcism to rid myself of all the the demon cells (Linda Blairs) that are still hiding in my body. Only the priest was about 9 hours late due to “waiting for orders, need to verify orders, staffing issues, only a few nurses certified to do this chemo” etc. etc. etc. The only problem was that there were periods of 3 to 4 hours between sparse explanations (hence the slower than molasses in Alaska). We left Thursday night after waiting all day for a call from the doctor’s office to see if we had authorization from insurance. Finally, I called Personalcare about 3:40 and they said they did have an authorization showing for one day (Friday the 15th). So of course the first thought that goes through my mind (immediately after the relief that we ARE going to get to go) is oh great – we have to go through this wait till the last minute every single week with authorization stuff. Kind of a pain in the arse when you are arranging hotel rooms and folks to look after the kids and all. Bear in mind I started calling on Tuesday to make sure that we were good to go with the response being “we don’t have any information”. Then on Thursday I was told by the office that there is only one authorization clerk and as best as they can tell the information has yet to be processed. Procrastinators of the world UNITE – tomorrow!. Anyway, I then called the doctor’s office to let them know we would be coming and oh, by the way, when and where am I supposed to report. She asked if she could call me back (this is at 4:45 pm). I left to take the girls to their grandmother’s house and when I got back they had returned the call, said to report to the admitting office at the hospital and did not leave a time. I decided that we still better go on Thursday night and call from the hotel early in the morning in the event that I needed to be there at 7 am or some such time. So onward to St. Louis with Rube’s night vision (35 mph on the interstate in St. Louis)!! We get up at 6:00 am and call the hospital admitting only to find out my ETA is 11:00 am. OK then, we could have waited till morning to go! So anyway, about 10:15 we arrived at the hospital (I figured we could sit and wait at the hotel or we could sit and wait at the hospital – little did I know), checked in at admitting and waited until about 12:00 when I was taken up to a room. As we entered the room, I saw a lady in the recliner in the far corner of the room and about 5 or 6 family members sprawled on both beds with a smorgasbord of food and thought, oh my, this looks like it will be a great place to be when I get the chemo. So, after we relocated everyone in the room, including the recliner, the transporter comes back in and says they are going to put me in another room. To myself says I “you think? So now I am in a room with a lovely LOL (little old lady) who was a sweet quiet soul and a much better companion. Hope she was able to feel the same about me as the day went on and on, found out I would be spending the night, received little or no information and was reduced to tears of frustration on more than one occasion. So finally at 9:30 pm, after all the pre-meds were administered, the chemo finally began. They started the IV Taxol first to which I immediately had a reaction of excessively red face, difficulty breathing and pulsating searing fire sensations up my spine. They stopped the drip, gave more Benadryl (I presume), allowed things to settle down which they did pretty quickly and then resumed the drip at a much slower infusion rate. I still had the sensation of difficulty catching my breath for a while and sat bolt upright on several occasions but the pulse oximeter said my oxygen rate was 96% so it was probably mostly residual anxiety if anything. I was initially more concerned about the intra-abdominal chemo when I found out they follow the chemo infusion with a liter and a half of fluid to flush it about the abdominal cavity. Especially considering the difficulty I have been having with bloating all along. The other fun item to learn was that they have to turn you from side to side every 15 minutes for 2 hours following the abdominal chemo. Wouldn’t have been so bad at 5:00 pm but did not consider it to be such at 2:00 am. The good part though was that I slept through all of the administration of the abdominal chemo. I woke up and saw that the menacing liter and a half was gone and had no adverse effects. Hallelujah! So, that brings to the present which would be Sunday at 4:30 – YES I started this at 6:30 this morning and NO I don’t type that slow. This cursed computer booted me out again as it had been unplugged for a while and even though it is plugged in it will not keep powered if the battery is low. So I have been laying low waiting for it to power up again. That is why it is 4:30 pm. Have actually not felt too bad today, mostly just a little rubber-legged and wiped out but not nauseated or anything. My cheeks look like lobsters – pretty red – but so far that is it. The jury is still out though as I have heard it sometimes takes several days before the full effects kick in. So I am just keeping my eyes and ears open and waiting for something I hope doesn’t come.

Think I will sign off for now. I hear a recliner calling my name and it doesn’t have anyone else with a bunch of food and family in it!!

Love,
Lisa

December 14, 2006

Okay, well alrighty then. Evidently the wheel is turning but the hamsters are dead – or at least playing possum. Unfortunately, the hamsters are cuter. I called “Personal”care this morning to find out whassup with authorization before we pack up and drive this afternoon. They have record of being contacted by the doctors office but guess what – no authorization is on record at this time. Am I surprised? Well, not exactly but one can hope things go smoothly just once in a while. So at this point, I am not sure we are going anywhere today. I left a message with the nurse that if we do not hear anything by 3:30 or 4:00 that we will not be coming this week. Don’t really know what else to do for now. My favorite part is when the insurance people ask (after dashing your hopes on the rocks at the bottom of the giant cliff) “Is there anything else we can do?” I’m like “Yeah, can you let me know if I have permission to attempt to survive a few more years so I can at least see my daughters graduate from High School, huh?” I suppose I better get used to this. There is a long road ahead and I am more than surely sure that this will happen over and over. I hope not though – I am rather prone to randy expletives and it does get embarrassing on occasion when I feel the need to fire off!! Better go – have to do the shower thing, get ready for the home health nurse and finish wrapping some things! Take care all!

Lisa

December 13, 2006

Just a mini-update today. Am still waiting for the call from St. Louis to see if the insurance gods are smiling on me and will give the necessary authorization for my chemo Friday. If all is good, we will be leaving tomorrow afternoon for a night in St. Louis (Hello Arch) and then a day of (as of yet) unknowns. Will see the good doctor Friday morning and then 4 hours of chemo. We will be coming home on Saturday. Thought I would take some time today to collect lab results and take care of a few remaining errands so that tomorrow is as relaxed as is humanly possible before the ride down. Not much else to report right now – am getting ready to take a shower (how I love being in there – would stay for hours if the water would hold up that long) and start a load of post-company laundry. It was wonderful having everyone here but I confess it is also wonderful having some quiet downtime before we begin this next leg of the journey.

Love to you All,
Lisa

December 10, 2006

First, I would like to apologize for taking so long to get this on board. We arrived home from the hospital a week ago yesterday, took a day to settle, welcomed my Dad and stepmom on Monday, parted ways on Friday morning (they for Ohio and me for St. Louis), returned home about 7:30 Friday evening, welcomed my son, daughter-in-law and grandson at about 8:00 and my girls returned home from their grandmother’s, all pretty much simultaneously. Yesterday we visited, shared pictures, ran a few small errands and such. Which brings us to here we are!! I thought I would attempt to get an entry in before the household starts waking and moving about.

Now, to explain the title. For those of you who have not seen VanHelsing (and I can say I include myself although I did watch it somewhat casually), he is a monster fighter (Frankenstein, Dracula, Werewolves etc). I was trying to think of something to call this entry and I decided since we are now to the battle stage, that would work as well as anything else I am able to come up with at the moment (anesthesia, ya know, affects the ability to think and concentrate – I swear!! Hence the lack of creativity). At any rate, (for Les Mis fans and to quote Enjolras) the time is near! The plan is this: Chemo begins this Friday. It is a three week cycle with chemo being given on days 1 and 8. Day one will be the rougher of the two with it taking four hours to run in. It will be through an IV and through the abdominal port both. Day 8 should take less time. I will need to see the doctor in the morning prior to the chemo so we will be going to St. Louis on Thursday evening and spending the night before and then also spending Friday night down there, at least on the Day 1 of the cycle. We are planning on staying Friday night on day 8 also at least for the first one till we know how I am going to react to the treatments. The doctor did say the intra-abdominal chemo is more effective but it is also very rough. There have been some patients that could not tolerate it and had to stop. They also said there have been some patients that played golf throughout their treatment. That will not be me – I don’t play golf. At any rate, it is impossible to know exactly what we will do yet. Can’t tell until I actually experience it. The doctor was very encouraging in that she said it is the “garden variety” of ovarian cancer. Strange expression huh? Basically, she is saying that it is the most common kind of ovarian cancer, nothing exotic or unknown, so the treatment has been around and it is the one that there is the most experience and studies with. This is a good thing. I found myself thinking it ironic that it would be the “garden variety”. That will teach me not to have a garden next year. She also reiterated that they got everything visible (it was even in the appendix), and that the spot on the liver was extremely superficial and not involving the liver (which was supported by the pathology report). They are classing me at a 3C level out of 4 in the staging. Anyway, I hear stirring about and the sound of my grandson. I will close for now as we have plans to take Cole to see Santa Claus and finally put a few decorations on the tree. Might look a little more like a tree that way. Love to you all – will check in as soon as I can. Hopefully, I can get Cheryl the computer whiz to help me fine tune this bloody computer a little so it is not so excruciating to get on here and make entries. Is slower than molasses in Alaska and the cursor likes to place itself randomly in the text even while you are typing so if there is anything that doesn’t make sense I attribute it to this stupid computer (I swear Michele – I didn’t do it)! I really did try to proof this as best as possible.

Love,
Lisa

Lisa

Okay – I am going to try this again.  Was sitting here typing an entry when I got booted out by a bottled water add.  No respect I tell ya!.  Hopefully, I don’t have a double entry although I hadn’t saved anything yet so I think I am starting afresh.   Anyway, have been sitting here having coffee and trying to stop procrastinating and get in the shower.  I was just handed a little added incentive as the home health nurse just called and will be here sooner rather than later.  It isn’t that showering is that much more difficult although it does require a little more care than usual.  Maybe it’s just the thought of the injection I have to give myself after I get out that leads to this dragging of the feet.  At any rate, I seem to feel pretty good in the mornings after I have been up for an hour or two.   Find myself waking up rather a lot at night – could have something to do with conditioning from being in the hospital – or it could just be that it is difficult to find a place (or position) to be in for more than several hours at a time.  Either way, I have pretty much been up at 5:00 or 5:30 every morning so far.  My energy held up much better than I expected yesterday.  I was afraid I would be worn out by afternoon but I was excited to see my dad and stepmom and my brother came out to visit also.  This was defininitely an energy booster.  I think Rube will be putting the lights on the Christmas tree tonight and my folks have been delegated the duty of tree trimming.  Given my analicity and perfectionistic tendencies, I don’t envy them this task.  I can already hear myself – “No, two branches to the left and up three”.  Or something like that!  I will have to let go of these tendencies of mine and savor the moment.  Well, speaking of moments, I think the moment has arrived that I must trudge to the shower and start the process.  It will be worth it once I get there.  Talk to you soon.

 Lisa

December 4, 2006

Hey everyone! We arrived home on Saturday, December 2 at approximately 2:00 pm. I was actually discharged from the hospital on Friday afternoon, but given the little ice storm that descended upon St. Louis, we were very grateful that we had another night’s reservation at the motel which we fully took advantage of. I have been wanting to update my blog for several days but have had a hard time finding a sustained level of energy to get through showering, medicine regiment, phone calls and just plain staying awake so I apologize for not writing sooner. Am doing pretty well, although I still find myself suddenly falling asleep without little advance warning at times. Also still feel like I am walking like a primate somewhat. Would rather walk like a camel, or an Egyptian or something other than a chimp. Want to say thank you to all for the messages, thoughts and prayers; the absolutely lovely flowers (thank you Cardiac Diagnostics peoples!); my get better bear – balloon – and sunflowers (thank you and I miss all of you, my adopted platypii); Jane and Wendy – you are so very thoughtful and we appreciate it more than you can know; Diana – for your endless energy, your encyclopedia of been-there done-this knowledge (I am sorry you had to learn about all of this first) and the wonderful birthday messages for the girls; Sr Mara for your much needed and appreciated visit; Michele and Lin for your kind hearts and for the food; Jack and Julie for enabling us to stay connected and help with the girls, Tim and Kathy for your help with the girls and the motel arrangements; my “sisters”, my family, my husband and lovely daughters! Oh heavens – I knew it would be impossible to list everyone and everything that you all have done. I keep waiting for someone to start playing the music like the academy awards when you have too many thank you’s! Anyway, just wanted to let you all know that the support is amazingly strengthening. Rube and the girls brought home a Christmas tree yesterday, I had most of the house decorations up before we left last week so it all feels good. Things seem right, not scary. We will have the rest of the information we need to go forward when we go this Friday for my follow-up appointment. In the meantime, am expecting a visit from parents and my son and grandson this week. Am looking so forward to seeing them – have only seen my grandson Cole once since he was born. It is way past due. I promise I will check in more often as my energy improves – of course I expect there will be times in the near future when I will backslide a little but you can’t keep a good dog down too long can you? Or a platypus?!

Love,
Lisa

Well, since I have been chastised by my daughter today for my lack of communication, here I am!!  Have spent a good portion of the day memorizing the bathroom wallpaper and savoring the taste of chicken broth and jello.  Oh my.  I have to confess the Wendy’s cheeseburger that was consumed in my presence earlier today was extremely tempting.  I found myself looking longingly at all the fast food signs on the highway!  Well, tomorrow is the big day.  The hospital called this afternoon to let me know that the surgery has been moved up to 9:00 so will need to be there at 6:00.  This is a good thing – less time to sit and reflect on everything in the morning.  Please forgive the short note -  am having a difficult time staying in front of the computer long enough to type more than 1/2 sentence at a time.  Will be back on the “air” as soon as I am feeling up to it.  Goodnight my girls – I will call later before you go to bed!

November 22

Hello everyone! Thank you for all the thoughts and messages! We are home, it is 12:45 am and I am struggling to settle in, stop the whirlwind and go to bed. Easier said than done. We made it through the communication orchestrations, the insurance infidelities (the infidels!) and all the joys of needles et al. Actually, I sell the needles a bit short – did get the fluid removed oh hallelujah! The radiologist was rather I kind soul. He did everything in his power to make room for one extra slice of turkey tomorrow. I told him one slice of turkey and one piece of pie (with rather a lot of whipped cream – it is light and fluffy you know) would suffice just fine!
This be the plan – surgery will be Tuesday, 3 to 5 day stay post-op and chemo starts in two weeks. Now the rabbit in the hat will be to find someone a little this side of St. Louis that does the intra-abdominal chemo. Does anyone have a black market contact? I have every intention of doing the insurance tango, but I strongly suspect we are going to be wearing treadmarks into the highway between here and Barnes for the long haul. This, my friends, is all that I know at this moment. I was somewhat dismayed to find that there is no provision for internet access during my stay at the hospital, but I will resume postings as soon as I am home and I will make sure that Rube keeps everyone posted while I am there. Hope you all have a good Thanksgiving. Will probably send one more post before departure just for posterity.

Love you All,
Lisa

P.S.
I wore the plaid rocket dog shoes today. Just for luck. Just because.