I saw the oncologist this week... He thinks things are going ok.... I asked about scans and such.... none planned at this time. He is going to continue to monitor my cancer markers, I think he said especially my Ki67... which was VERY high when I was diagnosed. I asked him about radiation... because at one point, radiation seemed very certain for me. He said to me that it is not likely anymore. This is because I had the mastectomy (actually a double), but not likely. He said if the lumpectomy would have been the end, then absolutely, yes, I would have to have radiation. However, even though there was metastasis to the lymph nodes, by the time they operated and removed them, the mets to the lymph system was only to 3 lymph nodes.... If it had metastasized to 4 or more lymph nodes, then yes, I would need radiation. He also said that even though I had 4 cancerous tumors in my breast, the total size of all the tumors is still just under 5cm. If the size was 5cm or larger, then yes, I would have to have radiation, however, with this size, radiation does not appear indicated. He promised me he would double check with the radiation oncologist, but he does not feel I will have to have that. I cannot tell you why that was such a relief. Maybe because that is one less treatment I may have to endure. Maybe because of what radiation entails (daily committment for 6 weeks, more exaustion and burning my skin). Maybe because if I have radiation, it extends my treatment to the end of 2016. Maybe it is ALL of these reasons.... but I was relieved and happy!
So.... I start my next round of chemo on August 9 at 9am. This round is Taxol. He told me because I did not do the cytoxan (I feel I reacted very poorly to the Cytoxan, see previous blogs), that he is giving me the full dose of the Taxol. That scares me to be honest, but he also tells me that I should be able to tolerate this better than the adriamycin (Red Devil). The big thing for me to monitor is numbness in my hands and feet. The concern about this also is that people react to the additive agent that is mixed in with the Taxol. Because of this, the night before the taxol, I need to take my steriods. This is to help prepare my body for the taxol and help prevent any adverse reactions. Then on the day of the taxol, they will give my benedryl, kytril and something else prior to the taxol. I will also be placed in a private room for the first administration. This is in case I have an adverse reaction, then they can treat me quickly and privately. Of course, the upside of the private room, is that I get a bed.... which will be good since they are loading me up with benedryl! I already told Brad, plan on taking half a day vacation that day. So he can get me home and to bed... :)
The taxol treatments are 12 treatments in all and should be weekly treatments. However, there is always the chance that I could go for a treatment one week and my white cell count could be too low for chemo. If that would be the case, then I put it off another week. But I am now feeling better about this since I may not have to have radiation! I am soooo glad about that. If all the treatments occur like they should, I will finish at the end of October. I may get to go back to work this year!
As for work.... as you likely know, I am no longer getting paid. I used up all my sick time (I had 12 weeks) and my vacation time (an additional 2 weeks). Some people have said to me, that's all you had? Well, for someone that has been with this company 2 years, having 3 months sick time is pretty darn good! Plus, the 2 weeks vacation! In my company, if you are an employee with sick time, you do not get short term disability. The sick time IS your short term disability. However, if you have the sick time, you have the option to purchase a long term disability plan. Praise the Lord, I did purchase a long term disability plan. As for that.....
The long term disability is frustrating. The company that handles that is in Arizona. They have NOT been very helpful to me. The first phone call I had, the lady could not answer many questions and if I had not asked for the paperwork to be emailed to me, it would not have reached me for over 2 weeks. She said she mailed it that day.... Apparently the Arizona heat makes the mail run slower.
I completed my 8 page portion of the LTD paperwork and Brad faxed it in. It was partially like completely a job application. They wanted my current and 3 previous employers information, what I did, when I worked there, why I left. They wanted my education.... did I graduate from high school or have a GED? How much college do I have? Have I graduated from college? They also wanted to know if I had railroad benefits? Had I applied for social security benefits.... on and on... Wow.... what a mess!
My physician completed his 2 page portion of the LTD application.
I finally received a phone call from my "claims examiner" in Arizona last Friday. She was giggly and such.... which normally would not be so bad, except that she asked me if I was sure my cancer had metastasized. She wanted to know why I had not applied for social security disability. I advised her because you cannot get social security disability unless you have been disabled for more than a year. She said, how can I be sure I will not be disable for more than a year. I very could be disabled more than a year. I took it from this that they just do not want to pay out on the disability policy I purchased. By the time I was off the phone to her, I was crying and angry and even more upset. She explained to me that my first date of loss was February 10. I said, that was the date I met with my surgeon, I was working then... She promptly told me no, that was wrong, that my HR department told her I was off work February 10. I told her this was incorrect. I am in the HR department and I worked February 10 and all of February. I told her I worked up to March 11. She doubted me on this. While, it would have benefited me to have the first date of loss be February 10, but honesty is how I roll and also if she used that date, I would end up paying them back when the truth was finally discovered. Anyhoo.... she said if the March date was correct (she would investigate and see when I really went off work), then I would get my first disability check in early October. OCTOBER!!!! Yes, I freaked out even more!!! She said, you have to be off work 180 days, after that it takes a month to get your money, but they pay in arrears, so when I get paid in October, it will be for September and so on.... oh sweet muffins!
Her little happy voice telling me all this quite bluntly, pissed me off even more!!! Her boss called that evening... Brad talked to him very briefly, but he would not talk to Brad saying he couldn't due to HIPPA... whatever....
I heard nothing all week, so I called them.... got voice mail. She called and left me a message. She was not so giggly this time. She told me they had everything and it was under medical review to determine if the was a pre-existing condition. WHAT? A PRE-EXISTING CONDITION?!?!? This is a complete joke because prior to them accepting me for the long term disability insurance plan, I had to fill out medical forms disclosing my medical conditions, previous hospitalizations, etc... they accepted me.... and hey, Where's Obamacare on this one ? whatever......
So, I sit, unpaid. No promise of pay until possibly October. I am still thankful for the Go Fund Me page that Debra Heckler started for me. ( https://www.gofundme.com/27jv7dgb?viewupdates=1&utm_source=internal&utm_medium=email&utm_content=cta_button&utm_campaign=upd_n ) I am thankful for the people who have donated there! There are also people who have donate directly to Brad and I. Without these gifts of love...
Also, a friend from church provided a huge surprise! She brought us dinner Tuesday night this week and Wednesday night this week. She then told us she feels she needs to do this for a month! WHAT?! How awesome and wonderful! So Michele Bard, brought us chili one night and mac n cheese with FRESH homemade salsa the next night. What a gift!
What else am I thankful for? Well...
- my husband. He is so good to me and loving and caring. I cannot say I am thankful for him enough. I love him so much and thank God for him every day.
- My children. They help how they can. Whether it is taking me to the store, getting me lunch or making me laugh. Cody and Rebekah are good kids.
- My friends. I have found my friends. I know who they are and am so glad for them.
- My family. Extended family. They are wonderful. Again, they love me. I know that. they have pitched in and helped in ways that are phenomenal.
- Mostly, I am thankful to the Lord. He has carried me. He has pushed me. He has pulled me. He is getting me thru this.
So... on that thankful note... I end this entry. Love and peace to all
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