Rocket Dog Molly

Okay, I don’t know what gives but it is day 5 post chemo and I still have my hair. Teach me to be a good Girl Scout! Seriously, I knew there were advantages to not brushing your hair every day!! Not much to report today – am still feeling okay! Have to assume it’s because day 8 treatment is not as heavy duty. I am starting to get rather annoyed though with the bathroom saga as of late. Do really dislike prunes!!! Have considered putting a cot in there except the only one big enough to hold one is the master bathroom and it is like a freezer, no thank you!! I guess I will have to consider it as my aerobics workout for a while!! Hope you all had a Merry Christmas! Will be coming in on Thursday for lab work so will try to stop in and say hey to everyone – I miss you guys!

Lisa

Hi guys!!! I just want to say…..I’m too sexy for my hair, too sexy for my hair!! Went shopping for hair yesterday (sounds really weird to say) but considering most everyone has never ever seen me with any to speak of anyway, it was actually kind of fun! I figure nobody is going to be making a wig that looks like what I had before chemo, so I can go whatever color or style I want since there is no hiding the fact that it is fake. It’s not like the transition will be subtle or anything. I tried on one that looks like Emmylou Harris’ silver-platinum – that was fun. Then there was one that made me look like Dana Carvey’s Garth from Wayne’s World (if I had been wearing black-rimmed glasses anyway – made me want to start singing Bohemian Rhapsody!). Was scary but fun! I found one almost right away that is lighter than my own hair (kind of honey blond highlighted affair) and is cropped short at the neck but has more length on top. I rather like it a lot. Rube kept staring at me with this “I have a brand new wife-like leer”. I was about ready to send him home with our friends down the road for the night. I decided between anesthesia brain and chemo brain, blonder was the way to go. To which of course, Brenna took immediate offense! Anyway, that’s pretty much about it for today. Am feeling good yesterday and today – usual energy level but I know it will only last about another day before it starts waning again. And then there is the anticipated bailing of the hair that I am told will start happening 2 or 3 days post this past chemo treatment. I keep wondering if it would be easier to shave it now rather than wait for the chunks to start falling. Or is it going to be more like a dried out Christmas tree that when you shake it all the needles fall off all at once. HMMMM. These are the kinds of things that go through my mind. Scary isn’t it!! Anyway, I hope all of you have a Merry Christmas (and I do NOT apologize if that isn’t P.C. – too bad!!

“Hair”y Krishna,

“Molly”

Okay – first I am going to put out there that this computer irritates the fire out of me – have been sitting here for five minutes waiting for this post page to load, typed half of this sentence and it has jumped screens several times already.  Anyway – this may be one of these paragraphs that takes me all day to finish depending on my level of patience.  YESTERDAY WAS WONDERFUL!!  We walked in at 8:15, walked back directly to the chemo area and we were on our way home by 12:45 pm.  No offense to Barnes, but it is like comparing apples and oranges, or more aptly, apples and prunes (for which I have an intensifying disgust latetly due to all the gastrointestinal drama as of late!)  The nurse (Lucy) was fantastic – compassionate, attentive and right there for anything (bathroom breaks, making sure I turned over at the appropriate intervals etc.)  We traded information – she gave me a pamphlet about the St. Louis ovarian cancer organization and I gave her info about this website in the hope that it will provide others with an outlet for their journey.  It is amazing how the diagnosis of “irritable bowel syndrome” keeps popping up in conversations.  I think the thing that really kicks my butt is that I even went to the gynecologist at one point convinced that endometriosis might be responsible for all of the gastrointestinal symptoms I have been having FOREVER and I was basically told that those symptoms were not his specialty.  I would love to turn all the misdiagnosed ladies out there loose on him.  One thing Lucy said they are doing is taking some of these patients to talks for first and second year med students (while they are still young, impressionable and NOT JADED) and telling their stories in hopes that when they (the doctors) hear these types of symptoms, they might actually consider doing the testing and pursuing things a little more thoroughly.  I know it matters not now, but I have decided to get all of my office visit notes and H&P’s from my doctor visits just for my knowledge to see just how long this has been punted around.  I know there was a comment in one record I have about irritable bowel type symptoms in 2000.  Hmmm, could the kudzu have been spreading that long?  Who know?  And it really truly makes no difference at this point but it would be interesting to know.  At least I might feel vindicated for all of the frustration and disgust I felt for not being taken seriously enough to do any further testing. There is only so much flippin’ fiber you can ingest after all!! Anyway, I think as the pamphlet said, you have to be aggressive and be your own advocate when you feel something is not right. I truly can say I only really had that feeling maybe over the last year but it has been hard to sort things out (at least as far as energy and strength go) because I felt pretty deconditioned after the two foot surgeries. I mean in that I wasn’t able to be as physically active either due to pain, or orthopedic boots or wheelchairs for that matter, so I felt like I wasn’t up to my usual level of energy but it seemed explainable at the time. I had noticed a decline in my appetite but again it seemed logical when juxtaposed against the decrease in activity level. I guess all I am saying is if you need to, take a electric cattle prod with you to the doctor and don’t be afraid to use it if they are being “namby-pamby” (one of my favorite Boston Legal phrases by the way). I am hoping that we will only have to stay overnight now on day 1 of the chemo cycle (I have to be there to see the doctor at 8:15 am). On day 8, I am scheduled in at 8:30 but I think it would be okay as long as I am there by 9:00 or 9:30 since the intraperitoneal chemo ran in so fast. A large part of that depends on the type of catheter that you have. When she started mine up, she knew right away it would go in really quickly – was rather a rivulet! That way, we can just leave out by about 5:30 am or so and still get there in time. We tried to schedule it out a little later but she said the doctor has to be on site while they are running the chemo and they do not stay there later in the afternoon. Either way, I think we can work this out okay. Will definitely help on the hotel bill! It’s weird though – it is getting to be a little like a home away from home. It is familiar and very comfortable. At least this time they put us on the downtown side of the building. We could see a little of the arch in the morning after all the London fog disappeared! I tried to talk Rube into going to the Galleria Mall on the way home to see all of the Christmas displays – was told by the little lady in the hotel cafe that it truly is beautiful. Given the traffic congestion we saw at that exit, I am glad we bypassed it!! Maybe it will still be up when we go January 5. Rube has decided to leave around 1:00 pm instead of 3 or 4 pm. Thank God! He scares me at 45 MPH on the interstate at times. In his defense though, the trip down this time was horrible. It was foggy, misting or pouring the entire way and there were a kajillion trucks trying to get the last minute deliveries done before Christmas so they were constantly spraying the windshield to the point of zero visibility. On top of that, I had to listen to Celine Dion’s Christmas CD most of the way. Enough said! Help!!!!

Hope you have a wonderful holiday -

Love to you All –

“Molly”

Looks like everything is a go to have the treatment done at Missouri Baptist this time – yeah! I talked to Personalcare and all is good. Also talked to the nurse in the chemo treatment unit at Baptist (she was extremely helpful, explanatory and kind – what a blessing!). It is an outpatient setting with recliners etc., you wear your own clothes (no flippin gowns), and they close at 5:00 pm so they actually have an incentive to get you home the same day! The only drawback is we are scheduled to be there at 8:30 – Rube and I both were of the understanding that the day 8 treatment was a shorter one (?just IV chemo), so we are going to have to stay overnight again tonight. At least we know and can leave early enough to actually get dinner when we get there this time. They are telling me it will be about 5 hours for this treatment (this goes in the abdomen also – just a different drug this time). Will have to re-clarify this with the doctor – but I still haven’t received my chemo “schedule” from them yet so maybe Rube and I both misunderstood. Not too sure about this part. At any rate, regardless of the overnight and the longer treatment, I am absolutely thrilled that we can come home afterwards. I am definitely going to see if there is any way to schedule this a little later (9:30 or 10:00 am for at least the next day 8 treatment) so we can go down in the morning instead. Hopefully this is feasible. I don’t know if there is anything that can be done about day one since there are two different infusions but at least that would only be one night a cycle for a hotel. I think I am feeling a little better today – still achy and yucky but not as extreme as the last two days. Of course now it is time for another round. I was hoping if we did this on Fridays that some of the rough days would be over the weekend in order to conserve strength for work days but there is more of a delay than I anticipated. Being a newbie though, how would ya know? Well, I think that is about all I have for now – need to get a shower and start packing things up. I will most likely check in again before the holidays, but if I don’t I hope you all have a wonderful holiday with your families and friends.

Talk to you soon!
Lisa

Good morning! It’s that time of day again – the girls are gone to school, I can’t go back to sleep, so here I am bending your ears again! Not too much to report today – had onset of joint and leg pain yesterday which still seems to be with me but am doing okay. Feel a little shaky/wobbly on my legs so just taking it slowly. Today is the last day of school before Christmas break so I am enjoying the quiet AND looking forward to seeing a little more of the girls. I feel like things have been such a whirlwind that the time we usually have in the evening seems way too short lately but will make up for that tomorrow. I am certain they are looking forward to lounging about in pajamas as much as I do!! The only problem is trying to figure out what to put on when I do have to go out!! Diana is supposed to get together with me today in preparation of the great hair loss. This should be interesting trying to teach someone with minimal skill/interest in primping with hair accessories to tie scarves and such!! Maybe I’ll just get some big hoop earrings and be Jack Sparrow from “Pirates” for a while – of course that depends on whether I can find a long black curly wig. Sounds like a character that Rocket Dog Molly could hang out with for a while and cause general ruckus. Oh well, I really don’t have much more to add at the moment – am going to start the Personalcare calls soon to see if this Friday will be a little less eventful. Hopefully so. Then I am going to go see if I can muster a little appetite for some breakfast!

Talk to you soon –
Lisa

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