Sunday, July 30, 2006

The Slacker is Back

Well, I am really slacking at this blogging stuff. Life has just been too busy lately. Yeah, yeah, I know that I am supposed to be resting and recuperating but what can you do when you have to fight with the phone company over your DSL being down, you have to fight with Social Security to get your disability settled and various other things I don't even want to mention here.

Last week, I had the pleasure of going to the Social Security office, not once, but twice as things started to get settled. A decision was finally made on my case on Tuesday and it was an approval. Phew! Now, I can get my COBRA renewed (I hope) and complete my treatments. After getting the approval from SS, I immediately called the COBRA people to see what needed to be done for my health insurance. Well, guess what? COBRA is also a federal program and I have now been informed that I need my letter from SS (which I do not have yet but should have tomorrow) and that it then takes them 10 working days to decide if indeed I can continue my COBRA coverage. Argh! Apparently, even with the SS letter in hand it is not a given that approval will come through. And then to top it off, there is this thing called Cal-COBRA which nobody had said anything to me about until a friend mentioned it and I called the COBRA folks and they said, "Oh yeah, you are in California. Talk to Kaiser about that". And then there is the HIPPA plan. I am so confused now. Tomorrow, I will be over at Kaiser trying to figure it all out. It is nice to have choices but very confusing and, if you choose the wrong one, you can never go back and make it right.

Tomorrow, heralds both the end of my "official" revovery period from my surgery and also my 15th Herceptin infusion. Yes, I am still in treatment for my cancer and will continue to be for another 2 months (or so). Every 3 weeks, I visit the infusion center where I am hooked up to the machines and bags to have the Herceptin dripped into my veins in the hopes of killing any little rogue cancer cells that may be swimming around out there. I have Genentech to thank for this so any of you out there reading this that may work at Genentech or may know anyone that works for Genentech, please tell them "Thank You" from me.

Although my official recovery is over and I can begin to resume some of my normal activities, the actual recovery continues. It will be another few months before all of the swelling goes down and I can return to my doctor to determine if I need an "adjustment" surgery to fix any unacceptable parts of my new anatomical unit. About 60% of reconstructions require this and it looks as if mine will also. After that is done, it will be about another 4 - 5 months for the new swelling to subside and then I can have a nipple put on and should be done with the whole process (sometime next year). For the time being, I am just reveling in being able to wear all of my tops and blouses again now that I have a somewhat normal body part and not a prosthesis that falls forward allowing everyone to look right down my tops.

I must say that it has also been fun shopping with my new, flatter stomach. I am still the same size but everything seems to fit so much better. Now, if I could just find some money so that I could buy something......hmmmmmm.......

As I near the end of my treatments, I am feeling a bit strange. This life has so consumed me over the past 17 months as I worked at getting treated that it will be strange to not have to think about it any more. I will miss all of my Oncology nurses who welcome me so cheerily every 3 weeks and have taken such good, kind care of me. They have almost become like family- always asking about how my father is doing (they miss him since he doesn't need to come in with me any more) and wanting to know what is happening with me.

It is like leaving one job to go to another. I am happy about it but also feel sad to be saying goodbye. 2 more months......

Tuesday, July 25, 2006

Social Security - Part trois (or so)

I am laying in bed this morning trying to decide whether to get up or not and what to do about the heat. when the phone rings.

It is my new (third) Social Security Analyst. She had good news (maybe) and bad news. The good news was that a determination had been made in my case. I could hardly believe my ears! The bad news was that my case has now been sent (from Fresno) to San Francisco because it was picked up for review by the Quality Review Board.

She explained to me that the cases for the QRB are randomly chosen and that I just had the bad luck to have mine chosen. She said that it usually takes the QRB 1 month to decide whether they agree with the Analysts determination or not. If they do not agree, it goes back to the Analyst to get more information and present the determination again. If they do agree, the Analyst never hears anything more and the results go right back to the applicant. She wasn't sure if that came in a letter or in the form of a phone call.

She couldn't tell me what her determination was because there is a chance the QRB may not approve it. She told me that she made the determination based on my available information and that the Doctor's there at SS agreed with and approved her decision. It could be positive or negative. I couldn't get any clue from her. She did say that the Quality Board in her office sent a letter to the SF QRB stating that my case was a Dire Needs case and that a decision was needed by July 31 but didn't know if that would help or not.

I asked her if there was a number I could call in SF and she said she didn't have one she could call either. I said that I have had such bad luck on this case and she agreed. I explained that I had called COBRA to see if I could get an extension until I got the SS letter and they were of no help and said no.

She told me that if the answer was no from their office, I would receive a letter but if it was an approval, she wasn't sure if I would receive just a phone call and start getting checks or if I would get a letter. She referred me back to the office in San Jose to see if they had the answer to that question.

Overall, she was helpful and sympathetic. Lets just hope that everything goes through in time for me to renew my COBRA health insurance and continue with my treatments.

Sunday, July 23, 2006

Hot, Hot, Hot

No, I am not talking about myself, although, if you read my previous blog, you might have thought so. :D Ha! Ha!

So when you are done ROTFL, you can get up and read the rest of this blog. Or not....

It is so hot here that it is even starting to get to me, the Queen of Hot. I usually love hot weather and sunshine. It is definitely better than cold for me. And saves on the electric bill since I don't have air conditioning. :(

But even this heat wave is a bit much. Don't you think so? The dogs are just laying around with their tongues hanging out of their mouths. They have walked around looking for every cool spot in the house. So far, the concrete floor in the garage is winning out. The rugs are warm just to walk on. You would think there was a fire going under the house.

I have filled their dog pool twice - just to have an excuse to go stand in it myself. The cold water felt oh so good. I also took this chance to cut the grass around the sprinklers and make adjustments to the spray - just as an excuse to stand in them getting soaking wet as I did it. The bummer is that the back automatic sprinklers are now broken (as of yesterday). I am not sure what is wrong but now they need to be manually started (think wrench at the faucet - not switching from Auto to Manual on the control). It is too hot to fix them so I just have to remember to go turn them on this eve and then turn them off.

Yesterday, I joined the rest of the Valley over at the theater just to get into some air conditioning. All of the movies were full even to the front row - something I haven't seen in sometime. I watched "Click" with Adam Sandler and a host of other stars. It wsa a cute story - something like a modernized version of "Its a Wonderful Life". There was some unnecessary crudeness that took away from the film. Otherwise, it was good entertainment. I also saw "Cars" and have to agree with the other comments that this is more of an adult film. I don't know that I would take kids to it or that they would be all that interested. Some of the 9 - 10 year olds in the theater seemed to "get it" better than I did but the younger kids were bored or fell asleep. Not much laughs there even for adults. At least I didn't fall asleep.

Thought about the movies again today but thought maybe I would stay home and keep the house open to see if it will stay cooler - Didn't work! It is still hot and worse so because it never got a chance to cool off last night. I was up at 3AM and it was still hot outside.

Okay, I am ready for a break from this (the heat and this blog). Don't know why I wrote so much but it is enough.

Hope you are all finding ways to keep cool.

Saturday, July 22, 2006

Maintenance, Oh Sweet Maintenance

I made it! I made it! (No, not SS although that would be nice, too)

Yesterday, I went to WW for my usual weigh in and meeting and, (drum roll please), after 4 1/2 (yes, you are reading that right), after 4 1/2 years (not months, but years), at long last, I have reached my goal weight. Not just reached it but blew it away by 1.4 lbs!

This is not my true goal weight, understand, but rather the highest weight which WW would allow me to call goal weight. My true goal weight is about 8 pounds less than this weight but that is a small matter now.

So what is so special about goal weight? Well, I have to go to 6 more weigh ins. That is 6 more weeks without going over this goal weight. I can lose more but cannot gain. After 6 weeks, I become a LIFETIME MEMBER. That means that I can go to as many Weight Watcher's meetings as I like and weigh in the rest of my life FREE, yes FREE (no Ginzu steak knives though) as long as I do not go over my goal weight. What a sweet dream! I can go and lose the next 8 lbs or more - all for FREE, yes FREE - just have to stay below that one little number on the scale.

Wish me luck over the next 6 weeks. It is not as easy as it sounds, especially with my record of down 2 lbs, up 1 lb, etc.

And how much have I lost in 4 1/2 years? 69.4 lbs! Thank you WW. I figure this loss cost me about $2,340. Now think what that money could have bought! My health is worth it though. I am nearly back to the weight I was 8 years ago which was the same weight I had been since college. (give or take 5 lbs here and there). The weight went on so fast - 60 lbs in 6 months and the next 20 lbs over the next year - 80 lbs total. It never comes off as fast as goes on. Mother Nature is a cruel woman.....:0

So what am I going to do now? Go to Disneyland? Not quite. I am going to try and finish up with my recovery. 2 more weeks. Finish up with my treatments. 2 more months. Fight with Social Security (They gave me yet another new Analyst yesterday -and still no progress is being made - ugh) - ??? months/years???

And hope that after all of this that I can find a job to help me pay off these bills and make a decent living.

And finally (another drum roll here please),

Clean out my closet and get a new wardrobe that fits my new body (which I hope to still have by that time)!!!!!! :) :) :0) :0)

Hurray! And no, I didn't break my arm patting myself on the back ......but I do think I may have a little pain here...hmmmmm.... is that a dislocation.....oh well.....

Thanks for letting me brag!

Friday, July 21, 2006

Social Security

Ugh! That is the best and nicest thing I can say right now about Social Security and one of the few words I can get out between my tears.

It has been awhile since I wrote about SS so most of you have probably assumed that this had been resolved. I guess our government has been too concerned with spending our hard earned tax dollars on Iraq, Lebannon and illegal aliens to care about taking care of their own tax-paying citizens here at home.


So what is going on? I wish that I knew. My claim has been pending since January of this year. At least, that is when I filed it. The first analyst claims that she did not receive it until Feb. 7 and therefore, that is the listed date of the claim (although I have paperwork which states otherwise). The first step taken was to request all of my medical records from Kaiser. That took over 1 month and they were finally all received about Mar 17th (after calls from me to the various Kaiser Medical Secretaries who are famous for their arrogance and unwillingness to help or budge from their seats to make so much as a copy).

I repeatedly called SS and was told that SS had all they needed to make a decision and that they were just behind and slow in approving claims. I explained numerous times that my COBRA was expiring the end of July and I could only renew it with an approval letter from SS. Why is that important? I have checked the individual health plans and my co-pay increases dramatically meaning that it is unlikely I will be able to afford to continue my treatments until they are finished. You can imagine the angst and tears I have shed over that. What kind of country is it that we live in where a tax-paying (and I have always paid into SS, involuntarily, at the maximum) person with a life threatening disease can not even get the disability which the program was established for to get the treatment she requires?

Not to mention that I also told SS that my disability expired in May and disability sent a recommedation that I be approved for long term (SS) disability. SS's response to that? "So now the State thinks they can tell us what to do?" Ugh!

The frustration!

After many calls to my SS analyst, she at last told me the day before my surgery (June 19th), after she sat on my case for 4 months, that my files were now outdated and they had to go back to Kaiser and get my latest files in order to make a decision. I repeated to her again the urgency of my case and she actually laughed and said there is no way it would be decided by July 31.

After my surgery, when I should have been calmly relaxing and recovering, I was instead on the phone again with SS regarding my claim. On July 6, I was told that my rep was "on an extended leave" and that my case was being assigned to another rep. I spoke with the Supervisor who kindly explained that she was a breast cancer survivor herself and that she would assign my case to a rep that could give it immediate attention so that I wouldn't lose any more time.

In the meantime, I wrote a letter to my Senators - Senator Feinstein and Senator Boxer. One week later, I received a call from Senator Feinstein's office. They were going to open a Congressional Inquiry into my case and hope to get it resolved sooner.

Today (2 weeks after my case was to be reassigned), I spoke with my new rep. I made the cal. She did not call me. She told me that she was on vacation when she received my case and had just gotten back so she had not worked on it. I explained to her again the urgency and she just said that she hadn't sat on it for 5 months and had only just gotten it so it had not been "pending" with her. In other words, no sense of urgency, no rush. She explained that I needed to be disabled for more than 1 year in order to qualify. I explained that, as of March, when they had all of my records, I was disabled for over one year so why could I not receive approval already. She said that she didn't have time to explain the details of qualification to me but that I needed my files updated to qualify and that I now have to get a letter from my doctor confirming that the treatments and recent surgery have left me fatigued and debilitated so that I can not perform my usual work. Ugh!

I had vascular (micro-surgery) in which a big piece of my body was removed and then the blood vessels sewn into another part of my body. I was in the hospital for four days just so that they could continue to use the doppler on the reconstruction in order to make sure the blood was flowing through the newly sewn vessels. I could not drive or even cook for myself. I could barely walk. Most days were spent sleeping and I am stil very tired and restricted in my activities and she needs a letter from my doctor confirming that? It has only been 4 weeks and recovery (to a point of returning to normal activities - albeit slowly) is 6 weeks and then you only re-enter your life at a slow rate.

Not to mention that I am still taking biological (similar to chemo) treatments requiring a hospital visit and infusion every 3 weeks. And my left arm is still so sore and weak from the many infusions and blood tests it was submitted to that I can only type and work on the computer for limited periods of time (my job requires heavy computer use). I still suffer from fatigue and never know if a day will be "good" or "bad". The four surgeries, chemo and radiation I have gone through in the past 12 months have left my mind in a questionable state. Sometimes it seems to be fine and other times I can't even remember my own name. I walk around the house wondering why I am in a certain room with no recollection of how I got there. I will be in the middle of a conversation and suddenly my brain freezes up. I forget what I was talking about and cannot continue the conversation. All of this is not good for trying to function in a high level finance position. The oncologist says that these symptoms can last for a year or longer and then follows up with "but you should be able to work. Any employer that is not understanding of what you have been through is heartless". I am not sure what world he lives in but I do not currently have a job and it is hard enough to find a new one without having to explain that I need a day off every three weeks and that sometimes I may not be able to put in a full day due to fatigue, etc.

Anyway, back to Social Security. So now they have sent me a function report to fill out. I already filled this out once back in February but now they are telling me that I need a new one. What they really need they say is the signed form from my oncologist. They were supposed to fax it to me today so that I could take it over to my doctor and hope to get him to sign it so that I could fax it back and "maybe" get some action on my case by July 31. I never received the fax today and tomorrow is Friday meaning that I now have to wait the weekend until Monday which will already be the 24th. The new analyst told me that she has been with SS since 1981 and that there were a number of things done incorrectly on my case and that the previous analyst was "very slow". She says that she would have done things differently but couldn't now because of what had been done by the other analyst and that she really needs the letter from my doctor (of which I have not received the form yet). I feel as if I am caught in this vicious whirlpool that I can't get out of. Why is this all being done now after 5 1/2 months of them sitting on my claim and when I need it so badly? She told me that I should have applied in 2005 when I was first diagnosed because it takes a long time for SS to decide these claims (18 months?) Why does it take so long? And why do we as citizens have to go through this stress and agony at a time when we should be focusing on our health?

If you ask me (and it is my blog so I will tell you anyway), there is something dreadfully wrong with this system and it disgusts me to see our tax dollars wasted on such inefficiency. Even worse is that the inefficiencies are jeopardizing my health and well-being. I am not asking for a free handout here - only what is due to me as a taxpayer who is currently disabled and in need of a little help until I can get back on my feet again (which I hope will be sooner rather than later).

Well, that is my story. I hope that this all gets resolved soon so that I can relax and pay my bills and finish my treatments. And most of all so that I can find my happy self again. :)

Saturday, July 01, 2006

Non-events and other things

It has now been 10 days since my surgery. How times flies! How have I spent that time. Get out of hospital, visit parents, eat Mexican food, eat blueberry pancakes, walk with friend, eat tuna sandwiches, eat Portobello Mushroom chili, sleep, eat more of the same, eat Halibut, welcome dogs, sleep, eat more, walk dogs, visit nieces and sister, eat chicken and dumplings, paint, eat crepes, sleep, eat more, walk dogs with sister, eat turkey and cheese sandwiches, eat veggie omelet, watch movie(s), visit nieces, BIL and sister, sleep, eat enchiladas, visit with friends, walk dogs, eat vegetarian chinese food, visit with friends watch movie, sleep, go to Dr.

I think you see a pattern there - eat, sleep, walk....hmmmm....

And through it all, I am still dealing with these darn drains. For the faint of heart, do not read this part. What are drains. They are tubes which are sewn into your skin at the surgical sights - in my case, one at the reconstructed breast and two in the abdominal "donor" area. They are very long - dangling to my knees - and attached to the end are bottles with little plugs. The bottles are compressed to create a suction and then sealed. The idea is that they will drain any fluids your body decides to create to fill any vacuums left by the surgery until the skin is able to re-adhere and seal off those vacuums. The bottles are very annoying and need to be emptied and recorded twice/day. They are pinned to your clothing so that they don't dangle and pull out. The tubes hang everywhere. Wearing clothes is difficult since the abdominal tubes come out of the pubic area meaning that you have to button your pants above or below them - both options not the normal place for wearing pants and also cause pull and rub at the insertion points. The upper tube is right at the bra line. I must wear a bra - as required by my surgeon to suppport the new surgeries and that causes pull and rub at the upper insertion point. By today, my skin was red and irritated at all insertion points, all of my clothes had blood marks from leakage at the insertion points and, overall, I was uncomfortable.

I was really looking forward to my Dr. visit to have those things removed! All went well and the Dr. says I am recovering fine. My scars are doing well and the flap is pink, warm and soft - a real breast - yeah! Although, all of the swelling is not supposed to subside for 4 - 6 months, a good deal of it has already and the bruising is healing. The biopsy that was done on the lump from my left breast, came back benign, as expected but a reason to cheer anyway since things aren't always as expected (flash back to my first surgery - March 11, 2005 - all was supposed to be benign then and instead immense amounts of cancer were found in my right breast).

And, best of all, 2 of the drains were removed. The two that were bothering me the most. I would have liked to have all 3 out but one is still draining steadily so I will take the two. Tonight, I will sleep better and it is a whole lot easier to dress, shower and generally move around with only 1 drain.

And finally.....
what I haven't done this week that I thought I would do during recovery:
read books
catch up on reading all of the magazines laying around here
watch more movies
finish my needlepoint (the one and only one I will every do)
knit the dog toys project that I got to do during chemo (1 year ago)
paint at home
make jewelry

I thought that I will have all of this time just laying around but, so far, it has not been like that. The time has flown by...........doing just what, I am not sure but every day seems to have come and gone....