In Paradise

Yes i am lame for checking e-mail while in paradise. Melissa is off on a hike at the national park and i am taking a break inside between beach changes - yes there are 7 and while Melissa had to go to them all in one day - i will leisurely hit the last two today.

It is beautiful and incredibly relaxing. I'm snorkeling and doing weird arm movements in the ocean which i think should qualify the trip as physical (if not mental) therapy.

Will go outside soon.

Kim

I can go on vacation

I just came out of the cancer closet on facebook and California has apparently closed its budget hole. Apparently I can now go off the grid.

http://www.sacbee.com/1095/story/2053031.html

Tests all seem fine

I haven't talked to my doctor but talked to the nurse organizing the stage 3 study and it seems that all my scans have come back normal :). Nothing seems to have metastasized. I'm trying to get somewhat organized and will head off to the beach.

Knock wood it seems like things are back on track and I'm hopeful after this week of tests and next week of relaxation and starting radiation things will get back into a more humdrum pattern.

Sorry I won't see Cali folks until September but I'm optimistic you will have solved all the states problems by then. Will try and post from the beach but we'll see how well that works. There might even be pictures.

I remember when tubes were fun

Looking forward to a time when the next time I spend this much time going in and out of tubes they are more vertical and I end up splashing into water. It seems like I get to have doctors appointments or tests every day this week but Thursday woo hoo.

Tuesday I met with my plastic surgeon who basically took more topless pictures (naturally) said I was healing well and said I should make an appointment for a month post radiation and surgery will be 3-6 months after radiation depending on how I am healing. I'm not supposed to diet but can exercise but he thinks I have just the right amount of stomach fat for my diep surgery. I'm guessing if I lose too much weight putting it back on with my friends Ben & Jerry and proclivity to eat tortured geese will work just fine.

I was supposed to have a bone scan on Tuesday but they oops scheduled it for Wednesday. So in the end I waited until 9:30 to see if the next person wouldn't show up (do people really not show up for bone scans? we're not talking teeth cleaning or eye tests). I then went and got coffee and headed to plastic surgery. I then met with the nurse in charge of the study I am potentially participating in. On the upside I was at work by 11:30, earlier than expected. On the downside I was at G-town for 1 1/2 hours before my first actual appointment and then ahem was going to have 3 hours to kill between the 9am shot and the 12noon scan. (Apparently we need 3 hours to have the dye make its way to my bones).

I did take out my frustration a wee bit on California.

I then had my 8am ct scan appointment this morning, showed up at 7:30 and hung around until 8:45 when I asked if they should call up to nuclear medicine because we were running late. They sent me upstairs first and commented that they were surprised that they would schedule the (radioactive)injection for afterward given I need to wait 3 hours for the scan. So I got my shot at 9, went back down and had my ct scans which required finding a nurse to access my port, and then finding heparin to flush befor de-accessing (not sure that is the expression) the port. And suddenly it was almost 11am. I edited my California blog and posted, had lunch and then went and had my bone scan.

I was done by 12:30 and it all went smoothly besides the fact that I seem to have to needlessly get up 1 1/2 hours earlier to just sit around. But 3 hours of spare time can be used up in a snap when things are delayed.

Its also amazing how tiring going in and out of machines can be. Though these two insights might be related.

Anyway - will post results when I know them- ideally tomorrow or Friday.

All marked up and no place to go

Just got back from the radiation oncologist - she thinks the mastectomy was a total no-brainer, as is radiation. I should be having between 30-33 treatments starting next Thursday (yes, i get back from vacation on Wednesday). In the meantime, I was marked up, which was a surprise, and meet tomorrow with the plastic surgeon, the person in charge of the stage 3 trial of osteoperosis drugs, and have a bone density test. Wednesday I have ct scans and then my medical appointments for the week are done. (Two days with no tests and then St. John until Wednesday late, and then when I come back I start radiation on Thursday. I then get to find out which of the 3 arms--i.e., alternative treatments--of the study I am in on Monday August 3). It makes for a full and somewhat interesting life.

We also had a conference call with our board at work, and I basically got to explain that I am aware that states are in total meltdown but I seem to be filling my time with frivolous things like getting marked up and meeting with doctors. However, unlike the plastic surgeons, the radiation people wanted to actually take a picture of my face and, yes, I did ask if that meant they wanted me to put my shirt back on. (The answer was yes.) Unlike the plastic surgeons, the radiation folks just want my picture to make sure they are zapping the right person.

Will report more tomorrow.

Kim

Perspective and good doctors' visits

I had a good day on Thursday - good appointments with my doctors - I seem to be eligible to see about qualifying for a stage 3 trial that examines the use of drugs that build bone density. These are drugs used to prevent osteoperosis and they are checking if taking lowers the probability of breast cancer metastasizing into bones (the first place breast cancer will typically metastacisize(sp?) to. (This is what happened to Elizabeth Edwards.) I have a bone scan test tuesday and then a ct scan once back from st john and if results good can enter study.

My visit with the plastic surgeon also went well and my expander was expanded. This has evened me out somewhat though i might want one more fill - to try and get more symmetry. In general recovery has been okay and on the positive side expansion can happen during radiation (the markings and measurements are for below where any expansion occurs so will not be effected). Given they want to do the more involved DIEP tissue transfer reconstruction surgery they have the expander expanded far enough out for their purposes - which was to protect the skin. Scary how much saggier i am naturally than on the expanded side. Implants seem to fail and harden more once radiation is involved and the symmetry question is an issue.

Thursday's expansion has caused some discomfort and i am back temporarily on pain meds (percocet is my friend). We had a going away party for my boss on Thursday afternoon which seemed to go very well, despite or because of the presence of pain pills. I got to emcee and the party was the right mix of funny (snow theme) and making a little bit of fun of him and touching.
Len is a great guy and the vision behind the TPC and has been a terrific boss.

Last week I also spent time figuring out long term disability rules - which I am finally apparently eligible for and on as part of a program that allows one to work part time. I can work up to 75% given salary changes and can maintain eligibility to retrigger coverage if have other event in 6 months. Given the timing of radiation and then surgery (and more surgery) understanding the rules is key. Realistically between being tired, and all the doctor's visits I haven't gotten much actual work done so the 75% rate hasn't been a constraint. I'm hoping once I'm done with setting things up and on a radiation schedule work will become more of a regular activity.

In other news - I saw the new Harry Potter film yesterday (really liked it) and then Indian food for dinner with friends which was really fun and it was a beautiful day in DC. I was home and asleep by 9:00 though seemed to wake up every 90 minutes and wrote an original version of most of this at 2am. Took an ativan and nuprin at 4am and went to sleep for a longer period.

And now for a bit of perspective - I spent time Friday evening trying on bathing suits before the trip to Caneel Bay, and despite being 10-15 lbs heavier and in less good shape (back to the whole saggier issue) than I was last year, I thought I didn't look so bad. In fact was actually more happy with how the bathing suits looked than I was last year. Of course, with the scarring, and short hair and lopsidedness - the flab is the least of my concerns. Of course I've also come to terms I won't be picking anyone up on this trip (unlike of course all my prior vacations :) ).

So my friends, it is all about perspective. Tomorrow I meet with the radiation oncologist and ideally find out what the schedule for markings and zapping will be and then Tuesday I have an appointment for the bone scan, and with my plastic surgeon - the original one who will be in charge of reconstruction, my goal is to leave the plastic surgeon's office with a date (far in the future but definite) for reconstruction. I'm also hoping to meet with the nurse organizing the bone study. So while there's a shot I'll get some work done towards the end of the week it might not happen. (If they decide that having me in for my evaluation meeting so my doctor can decide the angles and possibly mark me this week that would be my highest priority.)

Now I'm spending time organizing my papers and possibly my clothes.

Peace out

Kim

PS I've decided that when i am in recovery mode from the diep surgery i will reread all the Harry Potter books - that is of course if they don't exceed the gallon of milk weight limit :).

PPS I am now on facebook if anyone wants "friending" let me know - I probably will take some pictures with me in them in St John so probably will disclose my breast cancer and this blog to a more public group then.

Healing well and dreaming of beaches

I don't have much to report. I am actually feeling pretty good and just waiting to hear what's next. I have my tickets to St John's so going to the beach is happening, in the meantime trying to get caught up on the state of the world (bleak) and the states(even bleaker). At some point people (meaning legislators) have to realize that paying for health care will take more than a millionaire's tax - i find it ironic that the fed is acting more like states.

I am mostly off drugs and feeling okay though trying to remember to not overdo it. I have two doctor's appts on Thursday (oncologist and plastic surgeon) but I think the first appointment is mainly to check in and I want to ask her if I would be eligible for a study that has people take a drug to help strengthen bones and they are examining to check if it helps lower the probability of cancer metastasizing into the bones. (Bones are where breast cancer tends to metastasize if it is going to.) Otherwise - not sure what we are covering except to go over the biopsy results.

The other appointment is with the plastic surgeon to check on how my healing is going. I'm not a doctor but things look like they are healing well. My big question is when and if we will be expanding my expander. I'm not sure I've never spent so much time trying to figure out the right set of clothes to wear to not put too much pressure on healing areas yet try and mask the difference in size.

The question of expansion I think mainly needs to be figured out before I start radiation. Once I'm marked and they figure out angles for the radiation zapping I don't think they will expand - it seems like it would screw up the math and physics. So in some ways there is a which comes first question that needs to be answered but I think will probably need to wait until the following week when I meed with the radiation oncologist and the plastic surgeon who will be doing my reconstruction and figure out if they will expand me and then we'd start radiation. I'm hoping that we start radiation sometime early in August as I'm hoping to go to Brussels towards the end of September.

I've also joined facebook but am not totally clear how much I will be on it and how much and if I'll talk about my cancer on facebook and how much I will post there. I'm still trying to figure it out - and how many groups to join.

Other news which not sure if I've mentioned is I've started going without the wig permanently. Generally gotten good comments and in general while the DC summer has seemed pretty mild it is a lot cooler to have the short hair. I find myself watching the Colbert report and watching the progress of my hair as compared to his -(after being shorn while in a war zone). I seem to be winning.

Heading to the beach and venting just a little bit

Just booked 4 days on St. John at the pricey hotel that is pretty sparsely populated. I realize I probably have had maybe a month of time i could actually spend in pools or the ocean and am really excited about the ability to be outside, relax and possibly take a break and focus on the fish and donkeys and not what may or may not be going on in my body.

I also want to go on a soap box a little bit and encourage anyone I know who is reading this to think hard before taking flights or going on vacation or trips if it seems like you or your family members might have swine flu. I had thought this would be a no brainer for people to understand that even though you might not have serious symptoms exposing others who might be sicker than you might be worth some inconvenience or spending on your part. Then a friend of mine explained how her brother-in-law and family called to say they were postponing their visit since the kids seemed to have the flu and it might be swine flu but once the airline said it would cost a couple of hundred dollars to change the tickets they figured what the hell. That's a plane load of folks exposed and then to put a cherry on top maybe a passle of people at disneyland.

Apparently if the airline isn't willing to waive the change fees why should they feel any responsibility to not expose a plane full of people? Really, do people really think this way? It might be because I'm having a rough year, or because I've spent a week in the hospital with no effective immune system, or the thought that I may well be one of the people who could die from it, but come on. How self-centered do you have to be to not care about those less fortunate? Granted it might not be selfishness, just thoughtlessness, but in any case - shouldn't the fact that you and yours are healthy and doing well be worth saying a word of thanks and possibly postponing your trip to disneyland?

Maybe I'm excessively upset because I've had at least 3 people ask me if it is really okay for me to travel since OTHERS may have swine flu and I could catch something. Recall - I've basically been homebound and avoided crowds and many events to avoid exposure. I've been poisoned, had three surgeries and have about a two-week window to have any sort of summer-time fun. Of course, I also happily pay my taxes, give money to charity, don't need a flat screen tv and also only bought a house I could afford a 20% down-payment on.

So if things are going well for you - can you just stop and appreciate it? And, if you have to postpone your vacation to maybe keep someone else from getting even more seriously ill, just do it and be happy you can.

Of course - given who reads my blog and how terrific you have all been you really aren't the audience of folks who I think would do this. But if you're talking to people and they are wondering whether they should inconvenience themselves when it probably isn't such a big deal maybe remind them that it could be.

I'm off the soap-box and will go to bed now that I will be joining the world of people who stay awake from 8-11.

Drain's out so now all bionic parts are covered by skin

Okay - so they really aren't bionic - just artificial stuff in my body that come with little explainer cards. I'm not exactly sure what a bionic breast expander would do - but I'm thinking it could be like something out of an Austin Powers movie.

Today's visit went well - my stitches are healing well, drainage was fairly minimal so the doctor took out the drain. Super excited to not have random external tubing attached but I must admit that in some ways the most exciting part of drain removal may be that I can stop taking antibiotics.

Some of you might think between the narcotics, anti-anxiety pills, chemo drugs, steroids I wouldn't have such strong feelings about antibiotics. After all, the discovery of them has saved countless lives, and general makes people well. I'm sure they've helped me in the past but the fact that I seem to regularly have strange reactions to them that leads to quizzical/skeptical looks from medical professionals hasn't helped. And the fact that I seem to have taken more an tibiotics in the last 6 months than in the rest of my life is just sort of interesting. When running the fever most likely related to the taxol they had me on antibiotics and then when I was hospitalized for neutropenia (or a non-functional immune system) I seem to have developed my foot neuropathy after taking one of the antibiotics in the hospital and then thrush and other yeast infections.

I have been very good about taking my antibiotics, which I do understand they need to give you when you have things like drains coming out of your body but do find it incredibly strange that my reaction to said drug (Cefadroxil) was to immediately pass out and enter deep narcoleptic sleep for 2-3 hours. Interesting sleep schedule given I was taking them around 8 - to sleep that much in the morning and evening, left me often awake for that lovely 2-4 am period of time.
I read, did random number puzzles and listened to npr so did manage to avoid ordering shammies or other late night products.

You might be thinking it was the valium or percocet that knocked me out given their labels suggested this could happen, but the antibiotic knock-out happened even when I wasn't on any of the other drugs. I've also had some occasional nausea which has happened only when circumstance has made me stay awake in those post anti-biotic hours. It really was the only thing i was on this morning and there really wasn't anything to be nervous about at this appointment as compared to say Tuesday's appointment when biopsy results were given. Dr J. also commented today about how much better I've been this week at my appointments than last Thursday's and I didn't have the heart to explain it wasn't the surgery recovery but the fact that I suddenly had to function after taking the antibiotic without the benefit of my 2 hours of unconsciousness.

An additional bonus from said antibiotic has been a yeast infection but at least this time around it didn't come with thrush (knock wood) so all in all we can at least say this was a less bad antibiotic reaction than during chemo It is however strengthening my attachment to Cipro my favorite antibiotic which seems to do none of these things to my body and was what I took after surgery number 1.

In happier news both sets of surgeons seem to think my traveling at the end of the month seems totally fine. I was thinking about going to SF to see visit with friends but that might be traded in for a trip back to the Carribbean and St John. I love you guys, but last summer's trip to Caneel Bay was incredibly relaxing, beautiful and swimming with the fishes (in a good literal, non- metaphorical sense) was so great it might have to be repeated in the limited period of time when I am allowed to be exposed to both sunlight and immersed in water. Caneel Bay also has the total advantage of enough beaches (they have 7) that some are basically empty and I won't scare young children with my current rather lumpy appearance. The fish are rather forgiving of odd body shapes and, all comments about bionics aside, I in no way resemble Elizabeth Hurley or the other fembots.

I did however get to take some more naked upper torso shots. Not really sure what they do with all these pictures but I am happy not to have any tattoos or distinguishing marks which will make my shots obvious. As with my drug-taking, topless shots also seems to be an activity that seems to be occuring infinitely more frequently in my 40s than 20s.

That's all for now - I apologize to all if I have ruined the secret of the second Austin Powers movie.

Kim

Third time's the charm

I just got back from meeting with my general surgeon and the news from the pathology report is very good. The good news is that my chest wall/muscle is clear of cancer, so that is a huge relief in terms of prognosis. There were, however, some cancer cells found in my lymphovascular system in 9 of 25 regions. So the cancer is contained and doesn't seem to have gone further but the decision to go ahead with the mastectomy instead of trying another re-excision was a good one. Other news is that my organizing biopsy cavity has exuberant foreign body giant cell reaction - which i think translates into my body kicks ass at healing (i.e., the tissue and cells were working hard to take care of the hole created by the first surgery). My stitches and skin look, good so healing is going well and things in general look good.

The meetings with the plastic surgeon also went well so people in general are happy with my healing. I'm guessing I will have the second drain removed on Thursday and it looks l like I am on track to move on to radiation beginning in August. It also seems likely that my drug taking days may be numbered. Already have permission to cut way down on the percocet and Dr. E. (the general surgeon) seemed to think I can cut back on the valium as the skin is healing well - if there was a lack of oxygen the skin would be looking black and necrotic - now it just looks a little bruised.

If I stick with starting radiation at the beginning of August, I might be able to take a trip in my future. Thinking about coming to CA, but might trade that in for a beachier/resort vacation given the surgeons seem to think I will be okay to go in water and once radiation starts - excess sunlight will be bad for me.

On other news I went into work today - sans wig and with drain. Figuring out what one wears to cover up random artificial tubes and bruising was a little interesting but seemed to work. I have dyed the gray in my hair and now need to figure out where to store Jackie and Kiki. I figure when my boss showed up for work after a week off for neck neurosurgery and on drugs the gauntlet was thrown down. Though, between the two of us, remembering details did seem a little like a bad comedy routine.

Anyway I'll be more in touch with those of you I haven't called back and in general things are going well if I'm still tired and do seem to need regular naps.

Thanks again to all of you for your good thoughts and generous gifts.


xxoo

Kim

Leaving out words might be drug related

Just tried editing the last blog - sorry for the random typos and left out words - not sure what the last word was supposed to be but lets assume I want folks to be careful with fire and lit explosives.

Today was a good day - slept some more - then Melissa came over - BoSoxFox in general goes above and beyond. She stayed while i took a shower - banner achievement - and then we went out to cvs to refill the percocet prescription, walked to the new gelato place and had a good time out in the world. Taleen also spent me a spa package which i will love to use once my body seems up for pampering and more contact. Again you guys are great and I love and appreciate all you are doing for me.

Its now 5 and i am ready for bed and rest - of course it could be the valium speaking.

I'm doing well - mellow but feeling pretty good.

Kim

Happy July 3- almost independence day

Thought I'd report in again as recovery seems to be going well. Was let out of the hospital tuesday around 4 and had a pretty good day on Wednesday. The valium/percocet combination or the fact that my arm is less uncomfortable has meant I've been sleeping more this recovery than I did after the first surgery. I still wake up but I'm sleeping more like 3-5 hours at a time rather than an hour and then waking up. Wednesday was a fine day - woke up in the morning - took my antibiotic and then slept most of the morning. In the afternoon I was up and fairly functional. Len, my boss for at least the next month came over and I even put clothes on and went for a walk with him and MaryAnn around the block. It was a little sad - with Mary Ann being the only fully functional one of our merry crew. Len had neck surgery and was wearing a neck brace, I had my lovely drains but it was a reasonably nice day and I stayed awake and alert through dinner and then basically around 8:30 or 9:00 decided i needed to retreat back into the cave i call a bedroom.

Thursday was a little rougher. Slept well and longer but didn't take pain meds regularly (took the valium at midnight and then went about 12 hours). I woke up, ate breakfast and headed back to sleep - things got a little crazy as the plastic surgery office was trying to reach me to reschedule my 4pm appointment to before noon. Unfortunately they seemed to be calling the hospital number and left a message on my cell that i didn't get until after 10:30. Suddenly i was throwing clothes on barking orders at poor Mary Ann and in the car and at g-town by 11:20. I hadn't taken much pain meds and was definitely the worse for wear from the trip.

Dr. J was happy with how things are healing, took out one of the two drains and basically told me to take the pain meds on a regular schedule for a little while. She pointed out I had had pretty major surgery and they were giving me drugs for a reason. Between rushing and probably not eating enough I was slightly nauseated and out of it for much of the rest of the day. I rallied and had some food with Sue and MaryAnn at lunch and then ate some rice and a little bit of food for dinner with Mary Ann and Melissa. Last night actually involved more reading, and less sleeping but not in a bad way. I also ate some bread and pate in the middle of the night and feel like the nausea might be behind me.

I'm now trying to be better about taking my meds - if not popping the percocet every 4 hours and valium every 6 I'm closer to that level. I finished a book yesterday - light reading but none the less reading words seems like a step up from the random soduku/ken-ken I had been doing.

I'also want to thank you all for presents this round of surgery - so far I've gotten a t-shirt - 5 books, lots of chocolate :), 3 things of flowers, an edible arrangements fruit bouquet and a basket of cheese, chocolate, fruit and other goodies. Thank you all for the presents and I am pretty set with stuff. You all are great and have made this process way easier. The loot makes having the three surgeries almost worth it. (Okay - not really but chocolate never hurt.)

Dana also needs a shout out for a trip to Target this weekend - I love my new lights even if they are targeted at college students. Not sure how I spent $250 given I was buying $20 dollar lamps but I always kind of knew that target is one of those dangerous places for me - though most things bought will be used and were good purchases and it has to be a better addiction than going to boutiques. It was also great to see Rob and Ellen last weekend and Tracy, hanging out was fun. Andy and Sue get shout outs for Sunday visits and Sue you did a fabulous job assembling said $20 lights.

Special thanks also to Mary Ann who was great to have around, providing care but also having enough other things to keep her occupied when I would retreat and in being exceedingly patient with both me and the crazy which is my mother - god bless her. Mary Ann, I hope you have a great weekend back in Boston and get to start making actual progress on putting in the pool.

I also hope all you folks in NY and Boston manage to get some sunshine. DC weather looks pretty good after seeing how grey, rainy and dismal it is in the rest of the East Coast. Sure we get some violent rain but they don't seem to last long and are kind of fun to watch, especially if you are safely inside.

This weekend goals include going out for a walk a couple of times - but no billy goat trail (yes my doctors are funny and Dr. J did in fact say this) and might try and enjoy some mellow July 4 activities - bbq or watching fireworks from a random roof top rather than heading to the Mall with the masses.

That seems about it to report - things seem to be going well. My breast area is blotchy and bumpy but will be fixed over time. Next week there are more doctor appointments - twice a week with the plastic surgery folks until the drain is out and a meeting with Dr E my surgery to hear about the biopsy results and then I will check back in with oncology and at some point figure out when radiation will start the week after.

For now I am enjoying the many books, food and pills I get to enjoy - I suppose it is a good thing to know I need encouragement to take narcotics and don't seem to be in danger of needing a trip to a Betty Ford clinic (except perhaps for the chocolate addiction).

That's all for now - time for my morning nap. At some point I will need to try and figure out the fun facts about which states have or have not passed budgets and how we can fix the economy - these issues may or may not be better dealt with on drugs - if insight hits I'll suggest valium to Arnold and the other governors.

Have fun this weekend and try not to do anything stupid with fireworks.