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" ( 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


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.