Friday, October 16, 2009

End of Treatment and the start of the new Journey

I am so sorry for not keeping this blog up (thank you Elizabeth for guilting me, isn't it nice to nag me for a change!). I have no excuse for not writing about the final day of the journey nor the beginning of the next. So please accept my apologies.

That final day driving to the hospital was so surreal. I kept thinking "is this it, is this really the last time I will be treated for cancer and will these last zaps of radiation be the ones that kill Voldemort and company. Lots of thoughts, lots of emotions. But at least I knew going into this last treatment that my brain would be protected! You see, Robert presented me this morning with an aluminum foil hat that I needed to wear to ensure that my lovely radiation technicians did not take their final retaliation on me and fry my brain. So picture this ... me walking into the hospital with this large aluminum foil hat on, cupcakes in hand, their gifts in cute little bags and a big shit ass grin on. Definitely an entrance.

The girls just shook their heads and laughed. But they got even! As I walked into the radiation room, there on the machine was this cute little box all tied up in ribbons ... they got me a present! I opened this carefully wrapped box and there on a bed of tissue paper was a 1" x 1" section of that wonderful cool wrap that they would put on my chest every other day to disperse the radiation. Not sure if I talked about this before, but this "bolus" as they called it, was so cool to the touch it always felt soooooo good on, that I use to try and sneak it out of the room .. unfortunately, they always caught me ... guess I didn't have a chance since the room is video monitored! Well opening this box made me laugh so much that I started to cry, I then lost it completely when I layed down on the table and there above me on the top of the machine was a sign congratulating me on my final treatment. These are definitely amazing women. But the "got-chas" didn't stop there, earlier that morning as I was getting dressed, Robert and I decided to "make our mark on history", so as my doctors were prone to writing on the right breast with blue sharpies (mapping points, drawing areas to treat, etc.) We decided to make our own mark. Robert took a black sharpie and on the left breast wrote "Thanks for the Mammories" (haha ... get it ... mammories ... ok so we are warped). So as I was laying down on the table, and my gown was lowered, the girls were able to see our own little message. This is where they lost it! We all definitelty had a good laugh over that one! They zapped me and then we hugged and all cried (their's were probably tears of "thank god, we can get back to normal now .. the wacko won't be coming back). But seriously, it was a tearful farewell (though I won't actually be gone as I still have to see the radiation oncologist every now and then and they are only down the hall ... actually I saw them again 3 weeks later when I went back for my follow-up appointment, but that's jumping into the future.

As for the evening celebration, we decided to hold off on the champagne until after we got back from sushi ... which was delicious and yes did also include saki. On the way back we decided to really live it up and stopped at the store and bought some caviar to go with the champagne. Life is good. Sitting on the floor, drinking champagne, eating caviar and watching Keith Oberman ... does it get any better!

There were several toasts that night .. to the death of Voldemort and company, to each other, to how lucky we are, to our amazing family and friends who supported us through this journey and finally to the start of our new journey. As you all know, religion and I don't exactly see eye-to-eye and I am about as far left as you can be on the religious scale, but we do consider ourselves blessed.

Now ... What have I learned on this journey ...

o That it is very difficult to shave your underarms when you can't feel them (due to the numbness)

o You can drink and undergo radiation at the same time (we laughed allot when people would ask if "I could drink" (your right Elizabeth ... I guess I do talk allot about alcohol)

o To always bring my "boobs in a bag" whenever I go shopping cause trying on tops without boobs just loses something in the translation.

o That if ever I lose my job, I could entertain at parties doing my "boob" trick ... flexing muscles that just look soooo funny with skin, muscles, scars and nipples all going in different directions at the same time.... where's Ed Sullivan when you need him! Such a talent!

o That I am so lucky to have so many who truly care for me (guess I'm not such a bitch after all ... no comments from the peanut gallery Jason!)

o To appreciate each and every day as you aren't guaranteed a tomorrow.

o To surround yourself with people you love and be sure to tell them each and every day just how much you love them.

o That I have the most amazing family. Robert, Jason and Elizabeth .. THANK YOU, I could not have dealt with all of this and stayed so positive without you at my side. I love you all so very much. I know it wasn't a journey we wanted to take, but we came out of it stronger and happier.

As Tiny Tim would say ... God Bless Us Everyone!

Monday, September 14, 2009

ONE MORE TREATMENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I can't believe it is finally here, tomorrow is my last radiation treatment for the demise of Voldemort and company! The end of this journey is tomorrow and the start of a new journey begins on Wednesday. I still can't get my mental hands around it! It feels like SOOOOO long ago that I was diagnosed. Yet it was only 123 days ago.

Robert and I plan on going to dinner tomorrow at the sushi restaurant we went to the day I was diagnosed (I was not about to cook that night and I sure as heck do not plan on cooking tomorrow!!! ... ok, so I will use any excuse to not have to cook!) and we intend to crack open a 1992 bottle of Dom Perignon (sorry Peggy, I know we said we would both open our bottles of 2006 Zichichi to celebrate, but I think champagne trumps a Cabernet for this, and I forgot we had the champagne... and I do like champagne!). The big dilemma is when to have it. Should we have it for cocktails before we go to dinner or have it when we come back (yes alcohol will play a big part of our celebration ... did I ever mention just how drunk I got the night before surgery ... ?) OR if we opt for after we come back, will it taste as good after my saki (can't have sushi without saki). Such a dilemma.

I am now working 4 hours a day until the 28th. Its definitely tiring and my arms/chest do hurt and numbness does get worse afterwards, but I think easing into it makes so much more sense (yes Jinny/Sherry I did learn after that one 8-hour day ... I'm not Polish, Blonde and female for nothing!!!). I actually feel like I am making progress in reconnecting the work synapsises and getting some things accomplished and future projects outlined.

I did get gifts for my two radiation technicians and Dr. Miercort's head nurse (will give it to them tomorrow). These amazing women have made this part of the journey fun and upbeat so I couldn't let the moment pass without showing them how much I appreciated their sarcasm and wit.

What have I learned through all of this .... think I will save those thoughts for tomorrow's blog.

Thanks for hanging in there with me!

Love, Kathie

Thursday, September 3, 2009

29 Down ... 7 To Go!

Well, as the title states, I have undergone 29 radiation sessions and ONLY have 7 more to go (last one scheduled for 9/15 ... WHAOO). My skin started really breaking down, so they switched my radiation plan a bit. Originally I was scheduled for 28 whole breast radiation sessions and then 8 sessions of a more "focalized -- boost" radiation. Well when the skin started having issues, they thought instead of giving me a break for a few days to give my skin a chance to heal, they would start the boost and then continue with the whole breast radiation after the 8 sessions. Which is where we are today. I can't believe we are finally seeing the light at the end of the tunnel!

I went back to work on Tuesday full-time and realized by the end of the day that my body just couldn't handle being at the desk for 8 hours. My energy was zapped, my arm had some mobility issues, plus the radiation issues. So I will now be working 4 hours per day for the next few weeks and go back to work full-time on the 28th. This way it gives me a chance to ease back into work and get my strength back.

Sorry to be so short today, but I'm pooped!!!!! Thanks for hanging in there!

Friday, August 21, 2009

20 Down ... 16 to Go!!!

Well as stated above, I've gone through 20 rounds of radiation so far and have 16 more to go. It's the strangest thing to look in the mirror and see a 7" x 7" square (yes I did measure it, so its not an exaggeration!) of skin that looks like a cross between an over-ripe strawberry and a brownie that's been in the oven a bit too long! Interesting visual isn't it. After talking with my radiation oncologist today, he indicated that instead of seeing me every Friday, I will now be seeing him every other day so he can monitor my skin as it seems to be breaking down under the strain of the radiation (don't worry, I won't go into that description!!!)

Also, you might remember that I had/have a problem with the ceiling at the hospital ... its boring white acustic tiles that you have to stare at, well on Thursday after the technicians (Sandra and Venecia) finished getting me settled on the table, as the machine started to rotate around giving me a view of the ceiling, I see a sign that the girls put up that said "Hi Kathie, What are you looking at (with a smiley face)". It was the funniest thing (sounds pretty lame as I describe it, but I almost needed Depends!). These girls are so positive and do everything in their power to make it a "pleasant" experience. On Wednesday, they turned the lights off in the lounge as I was walking out and jumped out and yelled "BOO". It definitely appeals to my sense of humor. On Monday I am going to draw a winking eye on my chest with a note that say's "What are you looking at" or something equally as silly. The things you look forward toooo!!

Also, the bigger news that I should have mentioned first .... JASON GOT ACCEPTED TO LAW SCHOOL!!!!! WAHOO!!!! He's been there all week at orientation and starts classes on Monday. We are SO PROUD of him! So it looks like in 3 years we will have a dual graduation ... Elizabeth with her BA from Vanderbilt and Jason with his law degree from Elon! Hopefully they won't be scheduled for the same day! and boy is this house quiet and a bit lonely ... we do miss them!

Have a great weekend!

Love, Kathie

Friday, August 14, 2009

15th day of Radiation

Still not glowing (but haven't tried standing under a black light ... so don't know for sure!). ONLY 21 more sessions to go. Met with Dr. Miercort today (radiation doctor). He confirmed the effects that I am experiencing from the radiation are normal (sternum feels like I have been pounded on by a gorilla, my right side is such a pretty color ... think ripe strawberries, my chest skin is feeling like someone is pulling the saran wrap a little too tight and by noon I feel like a washed out dishrag. Gee, what a great picture I describe, but other than the above, I feel peachy keen!

Life in the Spitzer household will be changing drastically this weekend. Jason decided about 10 days ago to desert us and move to Greensboro, NC (I didn't think my cooking was that bad!). I wonder if the fact that his girlfriend is heading back to Elon (NC) tomorrow has anything to do with his decision! Melissa - who lives in Naples, is such a FANTASTIC woman and who possess all of the qualities you hope your children would find in a girlfriend/boyfriend (and she is really cute too … plus I think she can actually get him to keep his new apartment clean!! … what a woman!). If he doesn't get into law school (keep your fingers crossed that he hears something next week), he will be joining the "real world" and looking for that horrible 3 letter word ... JOB. He already has a roommate and is pretty psyched to start a new life (Robert and I are both jealous and sad at the same time). As for Elizabeth, she is heading back to Vanderbilt tomorrow (actually first to her mom's mountain home in NC for a few days and then onto Nashville on Thursday). Robert will be flying to Nashville on Thursday to help her get settled into her new dorm room. Nancy (Elizabeth's mom) will be helping her unpack, Robert will do all of the electrical connection stuff and Elizabeth has recruited a few boys to help with the heavy unloading … her room is on the 3rd floor with no elevator (way to go Elizabeth!!!). Wish I could be part of this "fun" but I have my rendezvous with Dr. Miercort!

So other than what I mentioned above, life is pretty much the same. Definitely miss my mom though. Since she went back to NJ on Monday, we are back to having to cook for ourselves and we don't have a regularly scheduled cocktail hour! BUMMER!!

Have a great weekend!

Love, Kathie

Friday, August 7, 2009

Life is Good!

We went to the Moffit Cancer Center on Wednesday for the second opinion of the course of my treatment. Needless to say, the few days leading up to that were not very good sleep wise for either myself or Robert. We finally got there and had to wait almost 3 hours before we saw anyone (very tough on the nerves!) and then we saw first a resident as well as fellowship person who asked alot of questions and then went over what they thought. We then waited another 1/2 hour before the big guns guy, Dr. Solimam came in to talk with us. The gist of it is he concurs with my oncologist that for my treatment, radiation is the best course of action and that chemotherapy would not be warranted. The areas that were not "margin clean" were small enough that radiation would get those suckers and they thought chemo would be an overkill (glad I didn't postpone my annual mammogram or else there would have been a different diagnosis ... hint hint for all of you woman out there who postpone yours!). Thankfully my cancer was caught early! He did suggest for an overall point of view that I research clinical trials for Herceptin (the drug that treats the Her2Neu aspect of my breast cancer ... great moving about the development of this drug... Harry Connick Jr plays the dr. who developed it ... "Living Proof" ... great movie and a definite tear jerker! But without his persistence, there wouldn't be any drug out there to treat this type of agressive cancer! So I will research it and look at the criteria out there for it and see if it is something I want to pursue or qualify for.

Other than that, have my 10th radiation treatment today ... only 26 more to go! The fatigue is definitely setting in .. I am wiped by early afternoon. But luckly so far no radiation burns (have a salve that I put on 3 times per day) but the skin is getting tighter which I have to try and reduce so that the reconstruction goes easier (sometime in January/February). I also developed an infection in one of the drain sites (the scar from the mastectomy drains. Have been using an antibiotic ointment on it but the dr. will determine today if I need to go on oral antibiotic to treat it.

My mom has been here since Monday and is a great help. She is like the energizer bunny. Nothing stops that woman. She is determined to rid every weed out of my garden before she leaves! And the kids (and Robert) have seconds/thirds when she cooks so they aren't too keen to see her go either (I NEVER get them to have seconds when I cook .. lucky if I can get them to finish their plates!)

Today I need to tackle all of the medical bills. I put them in an excel spreadsheet based on the information from the insurance forms and actuals bills last week ... that's when I found out that if I spend any more than 1 hour on the computer my right arm is not happy. Anyway, I want to review each one to ensure no double billing, etc. and then start that lovely part of paying them. Boy am I glad I have insurance ... THANKS PWC FOR HAVING SUCH GREAT COVERAGE!)

I forgot to mention the amazing medical knowledge of both Robert and Jason. Last night over dinner they wondered why I am not covered in some protective covering while being zapped by radiation (especially since the technicians are behind a 1 foot deep wall. So in order to protect me, they made a tin foil helmet for me to use to protect my brain. They are still revising it to figure the best way (and most stylish) to protect my female polish brain (for some reason they think I need all the protection I can get :( Stay tuned for pictures ... yes beer and wine was consumed during this endeavor!

Have a great weekend all! Miss you!

So that is the exciting news in my world.

Friday, July 31, 2009

Day 5 of Radiation

Today I go in for my 5th radiation treatment. It still amazes me how fantastic the people at the hospital are. They make a stressful situation "enjoyable" and "pleasant" if you can utilize such words for a treatment/situation that is frying your insides. Oh well!!!! The treatments don't hurt, you just lie on this table and the machine rotates around you and zaps for about 30 seconds each time. The tattoos are little black dots (a total of 6). I still want to paint the ceiling as it really bugs me that its a boring white (sorry Elizabeth ... she keeps giving me the look to "shut up please about the stupid white ceiling, gotta love that kid!). She made the most beautiful cupcakes last night for me to bring to the hospital today (thanks sweetie!). They look like sunflowers (if I knew how to post a picture I would include it!). I am sure they will be a big hit with the technicians.

While I was in the changing room on Wednesday, a woman came into the room crying. I was so concerned for her that it was bad news. But it was the best possible news ... she just finished her last radiation treatment. She was so happy, I couldn't stop hugging her as she cried in my arms. What a great feeling!

Also on Wednesday after my treatment, Kay came over for my weekly reflexology appointment (thanks again Lynn, Dennis and Danielle and of course Raymond .. the dog... who was only born a dog but doesn't realize that he is one). It feels so great to have this done and all of the research I have seen indicates that it does have a positive effect on treatment! Afterwards, I feel like "just peel me a grape".

The tiredness has started to set in. After yesterday's treatment, by the afternnoon I was ready to just lie down and not move. Will see what happens today. At least I have the weekend off from treatment.

My mom comes on Monday for a week long visit. Can't wait to see her. The radiation people said she can come into the room and see what is going on so that she can understand the treatment and lessen her worries. I know I am looking forward to all those things a mother does ... cooking, cleaning, ironing, filing, cockail hour, etc. She doesn't realize that we have been compiling a list of to-do's for her! Glad she doesn't have a computer and can't read this or she might consider cancelling her flight!

Well have to run to my appointment and "kill Voldermort". Have a great weekend!!!!

Friday, July 24, 2009

No Tattoo Today!

Well went to the hospital today for the 2nd stage before the actual radiation treatments that start on Monday. The whole process is extremely smooth, ran my scan card through the reader, went to the lounge to change into one of those beautiful hospital gowns but didn't even get a chance to sit down before they took me back to "The Room". You can tell that they put allot of thought (well almost) into this room to try and make it soothing for those that are coming in for treatments. There are beautiful murals on the walls as well as those woodsy scene murals. Definitely spa like (haha). This might actually not be so bad (if you believe that then I have nice bridge to sell you!!). Once I was on the table, they started with their sharpies again (I think I need to buy stock in that company). Now I have a whole new set of black "x's" and black lines all over my chest! They then took a new slew of pictures while I had to stay still. It was then that I realized that it must have been a male that designed the room .... Think about it ... not able to move, your hands are holding these pegs behind your head and you have to stay perfectly still for 15 minutes and what do you have to look at ... not those serene murals, but some stinky boring white acoustic ceiling tiles. The least they could do is make them interesting! Paint a scene on them, paint them different colors, instead I will keep thinking of that old joke ... "beige, beige, I think I will paint the ceiling beige". Also did not get the tattoos today, seems those will come on Monday.

So this was the exciting part of my day today. Hope yours was more interesting than mine! Have a great weekend and will talk to you on Monday!

Wednesday, July 22, 2009

Sorry for the delay in updates!

Again, sorry for not keeping the blog up to date, but unfortunately (or fortunately depending on how you look at it), there hasn't been much to report.

Last Friday (the 17th) I meet with Dr. Miercort (the radiation doctor) for my "simulation". Its about a half-hour process where they take several cat scans and submit them to some type of computer program that "maps" my radiation treatment plan. Dr. Miercort then compares the computer generated plan to my previous scans and either signs off on the plan or refines it. I then go back this Friday the 24th to then compare the marks that they drew on my chest for where they think the radiation points should be focused (I swear this doctor is a frustrated artist as he keeps taking out his sharpie and drawing on me ... I even asked him to autograph his last "masterpiece" but he wasn't getting my humor that day ... though this time I did notice that he has two holes in his ear from when he had pierced ears .. guess he outgrew that stage). Sorry for digressing! Anyway, once the plan is finalized, they then tattoo me (suppose to look like a black freckle ... I asked for lime green but was turned down .. damn they are such conformists!). Its a permanent tattoo so that in the event this sucker comes back (WHICH IT WOULDN'T DARE ... or Julie will personally beat the crap out of it) they know where it was that they radiated. Then I start going every day (except Saturday and Sunday) for the next 6 weeks for the radiation treatments. I also think I will continue on short-term disability though the middle to end of August.

So that's what's been going on medically lately. Though I have been in the process of securing all of the paperwork and films for the 2nd opinion at Moffit on the 5th.

I have been swimming every day, which has helped tremendously with my arm mobility. I am able to stretch much easier in the water utilizing my water weights and a "noodle". I can almost put my hands straight up (if you don't count the bending of my elbows ... ok, so I cheat!) I can now actually reach the second shelf of the kitchen cabinets. Yahoo!!! I have been given the go-ahead to drive, but Mr. Blogoo will only allow me to drive locally. I can drive straight easily and make simple turns, but if I have to turn the wheel hard (like in a parking lot) that is a challenge. The things you take for granted!

Actually got to go out last Saturday night to Alison and Ted's for dinner (terrific wine, delicious meal and great conversation ... thanks guys ... it felt great getting out of the house ... the walls definitely start to close in on you when you can't get out).

I still haven't even gotten to any of the items I put on my to do list for while I was out. Anke says I need to review the list and set goals for what I want to accomplish each week so I will give that a shot (also once I tell her that is what I am going to do, she will check up on me each week to ensure I accomplished it ... no wonder she makes a great "Life Coach" (www.coachinglifeactions.com if you want to hire her :)

Thanks again for all of your support!!!

Love, Kathie

Saturday, July 11, 2009

Not much to report since last Monday. We did celebrate that night, not with champagne, but a nice bottle of red. We (Robert, myself, Elizabeth and Jason) did a double celebration at a restaurant on the beach called Salt Rock for both Robert's birthday and the no chemo. Fantastic night. We were so stuffed that we decided to forgoe the birthday cake until the following day!

We also went that day to a mastectomy shop to look for boobs and bras. I don't know where they find these sales people or who designs these shops, but they despirately need to get out of the middle ages and get with the program. I swear, the first bra this woman showed me was something straight out of the 50's (seams and cone front ... Madonna could have used it in one of her videos!). Not realizing I didn't really have any other options, I had the woman order some boobs for me to try on (seems they didn't stock "matching pairs"). The next day, I went through my resource book and saw that Nordstrom's was listed. I called them and made an appointment with Maureen. She was amazing (think it helps that she is also originally from Long Island!). I knew I always loved Nordstrom's before, but now ..... Nordstrom's and Cigna (our insurance company) even have accounts set up so the insurance company is automatically billed! Anyway, found "boobs" that look and feel nice (and Maureen suggested that I "drive them home" (aka, wear them out of the store ... this woman definitely has my sense of humor! What I find totally amazing is that for 3 bras and 1 pair of boobs, total cost of $800 (we are all in the wrong business!) What do woman do who don't have insurance. So after reconstruction in January, I will disinfect the boobs and donate them to the cancer closet (a store where woman without insurance can get free stuff).

Still having good and bad days. If I don't get enough sleep, I am definitely in a lot of pain the next day (the nerve endings and tightness are definitely letting me know they are not happy!

Thanks to the "noodging" and daily e-mails from Pam insisting that I get a second opionion (she event sent over the bios of the doctors at Moffit ... gee and I thought I was "pushy" .. no wonder we have been friends for the past 36 years ... THANKS PAM) I have made an appointment (August 5th) with the breast section of Moffit Hospital to review my file and see if they concur with my oncologist and radiation oncologist.

Thank you all for your support, thoughtfulness and friendship. I seriously could not be doing this well without all of you.

Love, Kathie

Monday, July 6, 2009

Robert Gets His Birthday Present

NO CHEMO!!!!!

We met with the oncologist this mornig who said he would have bet on my needing chemo based on all of the pre-op testing, but after reading the pathology reports he feels that the radiation treatments are all I need. We didn't know whether to scream, cry or both. Plus on top of this, we got the news that the BRACA test came back negative. This is such a fantastic day! Champagne will definitely be flowing in the Spitzer household tonight!

Happy Birthday Robert!

Sorry for the lapse in writing since Wednesday. After the drain was put in and the local wore off, life was not much fun. The new drain was put directly into my chest cavity which did not like the intrusion. So for 2 days I was getting a repeatedly stabbing effect from the tube. Not fun, painful and I got very little sleep. I have discovered that when I get enough sleep, the following day is usually a pretty good one, but when I don't I think I am more sensitive to the pain. So Thursday was a blur and on Friday morning I got a call from the dr. office wanting to know if the fluid was low and if so would I want the drain to come out! I let them know the amount, and they said they would call back if the dr. thought it was sufficient to be removed. A few hours went by, no call, so Robert and I decided to stage a sit-in and went to the office and just sat around until they could see me and I could put on my sad quivering-lip puppy-dog eye look to them. Guess what happened .... Drain REMOVED! They didn't stand a chance! Robert was doubly happy as Dr. Bundschuh also told me no showers for at least 3-5 days so the drain hole could close up (they don't use stitches). So he is still my master bather! I also started using ice packs on my arms and chest as the numb nerve ending tingling is driving me nuts. After a few days, I am actually seeing improvement!

Still taking the rubber duckeys into the tub with me, again, if I have to take a bath, I might as well have some fun! Though the years, we must have accumulated at least 15 different ducks from various hotels as gifts (from my meeting planning days). Yesterday we staged a race between the Peabody duck (my favorite) and Coronado duck. I should have known the results before even attempting it, but I am sad to report the Coronado duck continually won. It seems the Peabody duck kept falling over (Tammy I guess some things are meant to NEVER change!)

I am proud to say I am no longer on pain medication and only take Ambien to go to sleep. I am also doing some weed pulling in the garden which helps stretch my atrophying muscles and tendons. Hurts like the dickens (gee, I wonder how dickens really hurts?), but the stretching is what I need to do. I just wish it weren’t so darn hot and humid outside!

Yesterday, the Long Island Spitzer's (Denise, Lynn and Danielle) gave me the most WONDERFUL gift. They arranged for a reflexologist to come to the house and treat/massage my feet. It felt so fantastic and I could actually feel the areas in my body that she was working on. Ok, maybe it's psychosomatic but afterwards, I really think my arm nerves were less tingly! So Kay will be coming once a week during my radiation treatments. She is also lending me (get that lending, not renting… amazing woman) a foot massager that she wants me to use 10 minutes before treatment and 10 minutes after to keep everything flowing. Something to look forward to as they burn my boob!

Well today is Robert's Birthday! Happy Birthday honey … I LOVE YOU!

We go to the oncologist at 10:40 to find out about chemo. Robert is hoping for a birthday present of "no chemo". Keep your fingers crossed that he gets his present. I can't put into words just how much he has supported me through all of this. He really is the most generous, compassionate and loving man.

Thursday, July 2, 2009

Lost in the fog...

Have you ever had a nightmare where you were wandering through a giant maze on a moonless, foggy night searching for the exit? Then you see a small spec of light and believe that you are finally heading in the right direction and will eventually get out. But you never get out because as you stop to gain strength before heading for that spec of light, all the walls of the maze move until you are totally lost again. Well, that is what Kathie and I are going through right now, we thought that we had our direction mapped out when we got the preliminary report of her pathology, only to find out that the direction we chose is blocked and we have to go back to square one and start all over.
Let me try to explain, last week Kathi got the news that her lymph nodes were clear and that she would not need radiation and probably not even chemo (Halleluiah). Yesterday we received news from her full pathology report that indicates that there were numerous tumors (not just the two we thought there were)and that some of the little buggers may have slipped out.
Unfortunately, the largest tumor was resting right on the muscle and because of that it now indicates that she will need radiation to be sure that all the little buggers are gone. Well, that alone would not be Sooooo terrible, but because of the need for radiation she has to put off reconstruction, which was schedule for the middle of July. Then we learned that the plastic surgeon will not be able to do reconstruction until at least SIX Months AFTER the radiation treatment.
Wait it gets better still, the plastic surgeon is now suggesting that because of the radiation he does not want to use implants but instead wants to take tissue and fat from her stomach area to do the reconstruction. Now I was willing to allot them to take her breasts to get rid of the cancer, but now they are asking too much. After all that is the stomach that I get to blow on when I finish bathing her, and I do not want it marred by a huge scar. I realize that I am being selfish but a guy has to draw the line somewhere. After all, the reason to take the tissue from her stomach is so that her "new" breast will be more natural, whereas if she has implants she may have one "normal" breast and one that may be hard (due to radiation). So, Kathie has a lot of ciphering to do about which way to go. As for me, I think having two halves of a coconut would work just fine.
So, all of the walls have moved an we have no idea where we are in the maze or where the exit is now. On Monday we get to have our consult with the Medical Oncologist, who I am expecting will add more roadblocks to our finding the exit. We have no idea what wonderful thoughts he may bring to the table, but even if he wants Kathie to have chemo (my bet), she will not be able to start that process till afer radiation. I suspect he will recommend chemo because Kathie's positive result on the HER2 hormone, which makes her more likely to redevelop cancer.
The good news is that Kathie had one of her drains replaced yesterday. I know that really doesn't sound like good news until you realize that means that I get to bather her again. And we all know that means that I get to blow on her belly to make her laugh when she is finished with her bath. See, you really can find some positive elements to laugh about in the midst of being lost in a giant maze...
Best Wishes from your ever so humble, Mr. Bloggoo

Continuation of Yesterday

Well ended up getting the drain put in. Wasn't so bad once they injected the lydacain. Was totally fascinating as I watched the procedure via the ultrasound monitor. It is totally amazing what they can do! There was allot of fluid so the new drain was definitely needed. You are going to think this is warped and strange, but it was funny watching my right breast deflate like a balloon as soon as the drain was operative.

Dr. Hart (the surgeon) showed up during the procedure to say hi as she was in the building. Her last day as a Dr. in St. Petersburg was the day before (she is moving to Park City August 1 ... if you EVER need a surgeon in that area, definitely call her! We got invited to her farewell party that night, but after the depressing news in the morning and the pain from the drain, we begged off.

Sleep last night was not easy, think I might actually take a nap today. Just came back from Dr. Gayoso's office (plastic surgeon). We discussed in more detail the reconstruction. He is definitely not a fan of putting in an implant after radiation (but would do it if we insist) as there is a very good chance that the implant would compress and become hard and in time wouldn't match the other breast that did not get radiation. He is more of a fan of taking fat and tissue from the abdomen area creating breasts from that (I immediately asked if that means I don't have to lose the 15 pounds that I want and don't have to do sit-ups -- as this sounds like a tummy tuck to me!!!). He didn't like that idea!!! Lot of options to think about and we have time to explore them as the surgery wouldn't occur until at least the beginning of the year. Guess I am glad I haven't yet bought my gown for Elizabeth's Debutante Ball (week between Christmas and New Year's).

Wednesday, July 1, 2009

Not Sure I like Today!

Just returned from Dr. Miercort's office (radiation dr.). Seems he was at the cancer board's meeting this morning (damn, I love that all my doctors are actively involved with each other). He explained my pathology report in more detail (from the questions I had after getting home yesterday and reading it), seems the margins in one area were not clear. What that means is, when a doctor removes a tumor, they also remove what they think is a clean area around it to ensure that they have removed all of the tumor and any stray cells. Well, since one of my tumors was lying right on top of the muscle, she removed everything right up to the muscle layer. Well the pathology on that site indicated the clean area still had cancer cells in them. So this means I will need 6 weeks of radiation (5 days per week) in order to eliminate any stray cells. He also feels that the reconstruction surgery should be put off until the radiation treatments are finished. The reason for this is that it is harder to hit the site with radiation if the implant is in its way. Will do more research on this as Julie's doctor told her she can have the reconstruction done before radiation. Definitely bummed as we had hoped the mastectomy would have removed all of the cancer :(

When I also told Dr. Miercort that I was going in today to have a drain put back in, he didn't look too happy. I am learning that if something needs to be done, that all of my doctors should have a say in it and not schedule something until all approve (he said something about too may cooks in the kitchen). Seems the input of a new drain could have an impact on the radiation treatment. So he took out his trusty sharpe and drew on me the areas that the drain could be placed (the 2 areas where the drains were and then 1 additional area). So now I am wondering if I should just deal with all of this swelling and not get the drain put in. We will go to Dr. Bundshuh at 1:30 (the woman who did one of the biopsies as well as the torture test in the hospital the day of surgery ... if anyone ever tells you to have a sentinal node dye test ... RUN!) and discuss all of this with her. Maybe she can just aspirate it. Will see. Stay tuned.

Tuesday, June 30, 2009

Latest update from Surgeon ... Sort of

We met with Dr. Hart today and would love to report that we have clear definitive information, but alas ... no. After reviewing the pathology report and surgical notes and discussing them with the Dr. and her assistant Leslie, we do know the following. Stage 1 cancer, after removal of the tumors the margins came back free of cancer. YIPEE. The cancer board meets tomorrow at 7:30 am and will discuss my file. The big question is whether they feel there is enough "clear space" from the tumors to the muscles (less than 0.1 cm). So radiation might still be on the table .. or not ... again depends on what the doctors say tomorrow. The other question on the table is whether or not I need the drug Herceptin (as I am Her2 positive). So what this all means is, we sit back and wait until tomorrow. After reading the pathology on my non cancerous breast, I am definitely glad I had it removed. Though it didn't come back cancerous, all of what they found didn't sound great and from what I read after looking up the words came back as pre-cancerous.

The other joyous news is that at 1:30 tomorrow, I am going back to the hospital to have another drain put in. There is just too much fluid and it needs to be removed. Not looking forward to this as when they took the drains out last week, the suckers are huge inside your body (like 6 inches of tubing inside!). When they were put in, I was asleep, which isn't an option for tomorrow. They say a local will be used and it shouldn't hurt ... yea and the Easter Bunny and the Tooth Fairy are coming over for dinner tomorrow.

I am also cleared to drive if I am off the pain pills (only take them now at night so that shouldn't be an issue), but she said I have to also be able to do this (raise your hands over your head without elbows bent and put your palms together). Yep, sounds easy, if you could just take out the straight elbows part. Damn, the things I use to take for granted!!! Robert though is looking forward to the drain going back in ... no more showers so he gets to bath me again! Think I will bring in some rubber duckys with me!

Saturday, June 27, 2009

Have had a difficult last couple of days, nothing earth shattering, just don't feel like I am making the progress that I was earlier in the week. The tumor pathology is still not in yet, so nothing to report on that front. I guess there is a part of me that doesn't want the rest of the news so waiting isn't causing any anxiety.

Have had a very difficult last 2 days. As I no longer have the drains, the fluid is accumulating under my arms and is making things uncomfortable (feels like the size of two hard boiled eggs on top of each other). This is causing the skin on the already swollen arms to chafe the skin on the sides of my torso. Can't find any clothing that feels comfortable and topless just doesn't cut it (haha). I am not sleeping well as I can't find a comfortable position and trying my best not to be cranky. I just asked Robert if I was being cranky and he said no. But then again, he is a smart husband who would say "no dear" to just about anything at this point. Gotta love that man!

There was a gay pride festival in town today that I was looking forward to going to for a little bit, just to get a change of scenery. But decided this morning that I just didn't have the energy to go. So I am learning to listen to my body. Well if at least I have to learn to listen to someone, it might as well be myself!

Jeez just read the above and boy do I sound whiney! Things could be so much worse and here I am complaining about not sleeping, chafing skin and the "friggin" ring of fire (how it feels under my skin). Ok, sorry for that and will work on getting out of my "pity party" or whatever you want to call it.

I am so grateful for all of your support, my family and the test results so far. I promise to come back tomorrow with a better attitude.

Love, Cranky

Wednesday, June 24, 2009

OOH, I Forgot

Dr. Hart also removed my 3 drains yesterday! So I can shower now! Granted it would be nice to take a shower, but will miss Robert giving me my daily bath and washing my hair! He actually blew on my belly button (like a little baby) yesterday and yes I did giggle (very Innocent .. so get your minds out of the gutter... That means you Tammy and Claire)! What a man! I could NEVER have gone through any of this without his unconditional love, strength, courage and humor.

I have heard from several of you that you miss his input on the blog, so I will ask him to be a guest "blogger" on the site tomorrow.

I also had a facial today ... that felt so fantastic. Had the appointment before all of this came about and decided to keep it, I am so glad that I did. The pampering from her with besides the facial, she also massages the neck, shoulders, hands and feet felt so relaxing ... I know feel like gumby!

Thank you all for your Thoughts, Prayers and Toasts - As they paid off!

Had the most wonderful day yesterday! It started with the appointment with Dr. Gayoso (plastic surgeon - cute, funny, fantastic dresser and someone who gives you his complete attention when talking ... sorry Robert! But I would take you in a heartbeat over him and Sean, so you are stuck with me.

Well anyway back to the story. It seems Dr. Gayoso had just gotten off the phone with the pathologist and proceeded to give us the "unofficial" word that the LYMPH NODES WERE CLEAN! We didn't know whether to scream, cry or laugh. Eventually we got back to the reason for our visit ... to discuss the reconstruction surgery scheduled for Monday the 29th. It was totally amazing, he took out this measuring devise, consulted this spreadsheet and then gave us some options ... felt like a Chinese menu - something from Column A, Column B or Column C. Sorry Tammy, he nixed the DDs (at least for now) everyone else, Tammy is the one that wants the DDs not me! He then took out another sheet and said I think I will bring 3 of this type, 3 of that type, etc. (I was afraid to ask why 3 ... did he have a secret Picasso fantasy?). Anyway, he ended up saying he was going to be bringing something like 8 different types to see what fit better. Man, I would LOVE to go shopping with this guy! We were definitely on top of the world when we left his office.

We then headed directly to the surgeon's office (definitely like the fact that these appointments were booked back-to-back and they are only about 1/2 mile away from each other). Only had to wait about 10 minutes at Dr. Hart's office before being brought into her office. This was a day if miracles! Dr. Hart immediately confirmed that it was official regarding the pathology on the lymph nodes (no cancer) but that the pathology on the tumors and the margin areas were not back yet. Since she cut right to the muscle and right to the top of the skin - leaving nothing in between, the pathologist wants to be certain that the cancer had not spread to the muscles since the tumors were right on top of the muscles. So back to the waiting line again, but at least we have some great news to hang onto. She then also explained that the pathologist would also determine if the tumors were self-contained or if they had started to invade other areas. She also indicated that if they were all completely self-contained, there was a chance that, AND GET THIS, that I might not need chemo nor radiation. Unfortunately because I am "unique" (please stop laughing), my case does not fall easily into any one clear path. So she is having my file presented to a group of doctors that get together every other week to discuss patients and their treatments (kinda like a brain trust) to get their take on what the best course of action should be. So the reconstruction is now postponed to the 15th of July. I also had a lump on the right side that they ultrasounded ... was fluid buildup which she aspirated out.

She then told us we should definitely go out for a drink tonight (gee, I do like this woman!), she then told Robert that I would probably be a cheap date (his eyes lit up)! I then asked how alcohol and vicodin would mix (who was this woman asking this "stupid" question?). Dr. Hart then said mixing the two could cause slower breathing ... and she looked directly at Robert and said "if this happens, give her mouth to mouth ... I needed depends at that moment!

Well we did celebrate, Jason, Robert and I did go out for Sushi and I had Saki.

Life is definitely good! Seriously, I would like to thank you all for your thoughts, prayers and toasts as without your vibes and pull with the one above, I don't think any of this would have been possible.

Love, Kathie

Monday, June 22, 2009

When "Nurse Debbie" came this morning, she indicated that the area still did not look good and it had grown from the night before. All this before I was able to finish my first cup of coffee! So she was going to call Dr. Hart's office to try and get me in to see her today and would call me around 9:30 am with the time of my appointment. Wouldn't you know it, at just that time, our phone decided to take a mini vacation. After Robert called the phone company, they said they would not have it back in operation until around 6:00 pm. Of course it didn't have the courtesy to go on the blink after I received my appointment time, no ... that would be too easy.

Got into the Dr's at 2:00 (she came into the office just to see me as she was in surgery earlier that day). Dr. Hart took one look at me, shook her head and I could tell by her expression that she thought Nurse Debbie was nuts. She told me to stop taking the antibiotic and that most likely the area was a spot that she had cut a bit too close to the skin so was irritated. Definitely like that woman's approach and directness. So we are still on for our appointment tomorrow for my post op visit. She indicated that she might take out 1 or 2 drains but that I should not get up my hopes that the pathology report would be back yet. DAMN!!!!

Also will be visiting the plastic surgeon tomorrow for a pre-op visit. Not sure how beneficial that appointment will be since we won't have the pathology report back in time, plus if the pathology reports indicate the lymph nodes were malignant, then radiation might enter the picture which would put the reconstruction surgery on the back burner (no pun intended).

The joy of waiting ...

But I did get to watch Oprah today and learned what type of jeans to get to fit your body! Colleen if you get to catch the after show you will like it ... Stacey London was the guest.

Sunday, June 21, 2009

Happy Father's Day!

Definitely on the pooped side today, think I must have done too much yesterday. Guess Robert bathing me, dressing me, cooking for me, fluffing my pillows and helping me back into bed (we have a rice bed and the mattress starts at my hips so am now required to actually use the decorative steps to get into bed .. thanks Donna ... remember they were a gift from you!) have definitely taken its toll (I could get use to this!!!) The visiting nurse came yesterday and said that I was doing so much better than her other two patients who only had a single breast removed (loved hearing this ... never realized I had such a competitive streak .. Julie between you and I we can leave these other women in the dust!).

"Cassandra" received her very own floral delivery yesterday, with instructions to the florist to make it "diva -ish". The arrangement has boa feathers all over it and the word "hot" in crystals. Way to go Peggy, leave it to you to come up with the unexpected!

The visiting nurse just left and it seems I have some type of "something" going on that wasn't there yesterday. Not quite an infection, possibly a fungus (yuk) but she wasn't sure what it was. So after consulting with the Dr. on duty, he put me on an antibiotic with instructions to see my Dr. tomorrow. So the visiting nurse will come over at 8:00 am (there goes my beauty sleep!) see how I am doing and then call my Dr. to schedule a time for me to come into the office. This leaves me hopeful that I might be able to also get the drains out a day earlier (wishful thinking but what the heck!).

Have I also mentioned that modesty completely goes out the window with a mastectomy (not that I really had any to start with!). So many people have seen my boobs (or lack of them) that I feel like I should also start charging an admission fee! Oh and speaking of that, I forgot to mention that the fabulous Dr. Hart was able to actually do a nipple saving surgery (I am sure more info than many of you were hoping for!) Meaning she was able to scoop out all of the cancer (notice the words "was able to" as opposed to "hoping") but keep all of the outward skin intact. Still looks like something Frankenstein would have passed over, but definitely something for the plastic surgeon to work with (who is a cutie that totally reminds Robert and I of "Beau" (the kids' cousin).

Saturday, June 20, 2009

In the words of Jack Nicholson in the "Shining" ... I'm Back!!!

Thank you all for all of your thoughts, prayers and "toasts". Is sounds so cliche but they really did help me through the past few days. I am a very lucky woman to have you all in my life! THANK YOU!

It seems like so long ago since Wednesday. Amazing what drugs can do! After surgery, I didn't end up praying to the bowl goddess (or in the case of a hospital bed, the plastic bucket goddess), but came awfully close! Unfortunately, didn't get the morphine pump (bummer) but had the injection morphine. The pain wasn't so bad until around 4 am and then my pain scale shot up to an 11 (scale only goes to 10). The next 3 hours were horrible as the morphine couldn't keep up with the pain, but by 7 am things started making a positive turn. Turns out the sentinel lymph nodes were malignant so those were removed along with the auxiliary lymph nodes (all on the right side). Don't know how many were removed nor their status, but will find out on Tuesday when we go back to the Dr.

When the Dr's assistant came in on Thursday morning to see "how things look", I was amazed by the fact that they don't use gauze, but a clear skin over the wounds and I don't have to use the ace bandage if I don't want to. So I am not as "stinky" as Julie, but am still on the "ripe" side.

Extremely tired and napping with eyes open (a nice way of saying zoning out) but getting through this. I read Julie's post and realized that what I thought might have been a pinched nerve in my back from staying in one position (my right arm is tingly and sort of half sleeping), but instead be a symptom of lymphodema. So will be doing some research on that and exercising the arm today as much as I can. The homecare nurse is coming at 5 so I will ask her then.

And before I forget, you are not going to believe what happened when I first got to the hospital. After checking in, changing into that lovely gown, and the nurse taking my vitals, a woman from the administration came in and said rather deadpan "did you bring it", I was like "excuse me", and she asked again "did I bring it", after going back and forth on this for a few minutes, it turns out she was asking if I brought the check to cover my out of pocket expenses relating to the hospital stay. Only in America!!!

Thursday, June 18, 2009

Sleeping Beauty Awakes

Okay, I understand that we need a little clarification here... I am Bloggoo and not BLOGO. Though I might have hair that resembles the dearly departed Governor of Illinois, I am not him, nor are we related. My blogs are more like something you would expect from Mr. Magoo, and therefore Bloggoo (or if you insist Blogoo). Now to the subject at hand...Kathie.
Our dear Madame has finally awoken from her drug induced sleep. She has been awake for a few hours and actually had some lunch and dinner. Just wanted to let you know that she should be coming home from the hospital tomorrow.
The physical therapist came in and evaluated Kathie and has said that she is where most people are after a week. As Kathie will be home tomorrow, I expect that she will be more than able to continue with this blog, so allow me to bid you All the Best. Again, I cannot express how much Kathie and the family appreciate all your Concern and Prayers - Thank You, Again.
In closing I only have one question, why is it that the Medical industry is more concerned with baldness and gout then REALLY finding a cure or a vaccine to END Breast Cancer NOW! I'll leave it to your imagination as to why that might be.
May you All Stay Well, Stay Safe and Be Happy!
Love You All
Good Morning campers! As you may be able to tell, I am not Kathie but that short sighted, bumbling Mr. Blaggoo. Kathie had a mostly restful night, as restful as you can get when they wake you up every two hours to check your vitals and ask if you are sleeping. Today they are trying to ween Kathie off of the Morphine and onto Vicadine. Kathie says she feels like Dr. House, if she starts walking with a cane we could all be in a bunch of trouble.
As I write this, Kathie is sleeping, she has spent most of this morning in that state. I was able to get her to eat some fruit cocktail, some crackers and her juice (plus some liquifidied Italian Ices). The surgical assistant came in this morning to check on her progress and change her bandages and claimed that all looks well - so far so good.
I read the emails that you sent to her this morning and that brightened her up. She would like me to tell you how much she appreciates your kind wishes and all of your concern. She asks that you include Julie in your prayers, and hopes that those that know Julie will send her words of encouragement today as Julie is having a tough day. It is amazing that these two women are going through almost the exact illness and treatment, my bet is on these strong, positive and incredible women. Cancer doesn't stand a chance against these amazing women and their incredible supportive friends and relatives.
Love to All

Wednesday, June 17, 2009

Evening of the Operation

You are all probably waiting patiently for Kathie to continue this blog. Well, sorry to say you are still stuck with Mr. Blaggoo. Kathie was moved to her room about 5pm and was actually able to drink some broth, grape juice and a few spoonfuls of jello before the pain and nausea took it's toll. We were able to get her a fresh new injection of Morphine which put her to sleep. In fact, the little cutie is still sleeping - definitely the best thing for her right now.
Since Kathie is sleeping there is probably no reason to keep you good people up to check up on this blog. So, go enjoy a good evening and please remember Kathie in your prayers before you retire for the night.
Tomorrow is a new day, and the beginning of the battle to bring Kathie into full health as quickly as possible. I am sure that you all feel, as I do, that we wish we could do more but you should know that your thoughts and prayers do work and we appreciate them. As for Kathie, she is in the best of care and even has a private nurse to watch over her tonight. Until tomorrow, Thank You, Thank You, Thank You.
Love to All

Kathie is out of Surgery

Kathie came out of surgery at about 3:10pm. Right now she is in Recovery and her nurse has said that all of her vitals are fine, and that she is resting comfortably. She should be moved up to a room in about an hour or so. The Doctor believes that she was able to remove all of the questionable areas and that Kathie did not lose a lot of blood. Now we have to wait for the tests to come back from pathology, in about a week.
It is my hope that Kathie will be able to blog this evening and give you a more personal view of her day. Forgive my inexperience at blogging, I actually am not a bloggee (as I do not read blogs), nor am I (obviously) a blogger. I guess I am more like a bloggoo, that is someone like Mr. Magoo attempting to blog.
I would like to Thank everyone for their good wishes, and especially for your prayers - keep up the good work.

With Love to All,
Robert, Jason & Elizabeth

Kathie's Progress

Kathie arrived at the hospital at 8am this morning. She went into surgery at 12:00pm. She is in good spirits and looking forward to being able to blog to everyone as soon as possible, unfortunately until then your stuck with us (Robert & kids). We'll keep you updated as information comes in.

Tuesday, June 16, 2009

Tuesday - 24 hours and counting!

Today will be spent putting together lists of things that need to get done and hopefully being able to cross them all off as complete. I will just feel so much better if the chaos in this house finally gets organized with everything in its place (haven't even started taking the drugs and I am already delusional!) . Getting my nails done at noon "a girl's gotta do what a girl's gotta do".

Elizabeth gave me last night the most fantastic basket of "goodies", soft button down jammies (you would not believe how hard these are to find), socks so soft I may never take them off, lotions, creams, foot massage paraphernalia, 2 bracelets, Teddy Bear, etc. Am looking forward to using all of the items as it is impossible to feel like crap if they are being used at the same time ...think back to the harem days when there was a different person working on each of your limbs ... I might get use to this! Peel me a grape anyone?

Monday, June 15, 2009

The Adventure Starts

Can't believe I am actually doing a blog and that I could actually figure out how to do it!!! Julie is to blame for this as she shamed me (without know it) to create my own, as I found myself continually going into her blog to see how she was doing!



Today is Monday and two days before the 2 for 1 special. Trying to get everything in order before Wednesday so I don't come back from the hospital wanting to clean up (not that Robert, Jason or Elizabeth will let me ... umph, maybe I could get use to it). We are almost finished in getting Jason completely moved it, though there is not one room in this house that is "completely" without chaos, the goal is total order by 6:00 pm tomorrow (wish I could inject that emoticon that has the laughing face rolling back and forth).



Elizabeth, Robert and I went wig shopping on Saturday. Definitely not an easy task. But after 3 stores and lots of try-ons (they never once complained), I finally settled on the one that they said made me light up with smiles. I am finally going to have what I never could before, long flowing wavy locks! My new alter ego is called "Cassandra". Will post pictures of her down the road after her "unveiling". VA VA VOOM