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I picked up my new hormones last night! It must be fate. They were called in Tuesday by my midwife and she said the pharmacy would probably need to order them and it would take a few days. I called yesterday to make sure the pharmacy received the order and when the hormones would be in. I figured I'd have to go a few days without, since I was on my last patch, and risk impending consequences from hormone dips. But when I called they said they received the perscription just as their order went out so they had received the hormones and filled the script. It was ready for pick up. Woot! No missed days!
I started them this morning. About 20 minutes after popping the pill I was over to toilet vomiting. So, not a great start, but I am still optimistic.
On side notes: Jackson saw the ENT specialist and we have scheduled his tonsillectomy and adenoid removal for March 29th. Andrea is going to be moved to the pre-K class for a week on a trial basis and pending a good outcome she will stay there and be recommended for kindergarten in the fall despite being only four. We are just hoping for the best outcome for her.
So, they are almost 2 months late, but who is counting! My breast surgeon is booking into March currently....of 2013!
Anyway, everything is perfect physically. My breasts are perfect, look and feel good. However, the doctors all agreed that the hormones are not working. I got a prescription for a new pill called PremPro. I will have to take it daily, but I am hoping to couple it with a vitamin and take them each morning as part of my routine. I NEED to make the taking of the pill work. He said that there aren't many options for convenience and that I need to prioritize personality and my health before convenience. I don't like it, but he is absolutely right.
He said it is completely normal to try various kinds of hormones and levels to find the right fit. No two patients are alike. He did say however that if this doesn't work, being my 4th try; he would recommend someone that specializes in hormones to follow up with. He is concerned that at my age there are a lot of factors to consider and my age might very well be playing a part in why this has been so challenging.
The doctor also commented that Ray must be really frustrated with me and my mood swings and in ability most of the time to be intimate. I almost without thinking said, "He's fine." But once I gave it some thought, I realize that I haven't considered his feelings much and I need to. It’s important that this doesn't rule my life. I am still a wife and mother FIRST. Then I am a patient. I can't forget that and I need to make sure that with all things considered, I am putting my marriage and my parenting first. I am so lucky to have an amazing support network here at home. I know Ray will probably never read this, but for all of you that do, he is an amazing man. I couldn't have asked for a better partner. He truly is a partner in the various aspects of our lives and I need to recognize that he has suffered also in this journey. Just because he is so great day to day doesn't mean he is okay. I think the doctor is right. Ray probably is very frustrated. Reagrdless, I know that he will always stand beside me. I am so secure in his love that I never question his willingness to be in this with me through the ups and downs. And I so truly appreciate and thank God for him daily.
There is some debate as to whether the term “Previvor” is offensive. I guess the argument is that it may take away from the significance of a cancer survivor. If you know me, you know well that I am not easily offended. I personally, obviously, do not take offense to this term. I don't really understand why anyone would find it offensive unless there was some sort of competitive motive behind wanting to be in a VIP group. At which I would wonder why you would want to be in any group related to cancer, VIP or not.
Again, I find it odd that people want to exclude others of varying perspectives and experiences with cancer. Are we going to start judging and ranking people with different stages of cancer, or seriousness of their cancer to define a level of survivor? Then why the desire to exclude those of us with hereditary genetic predispositions? Are we not a group in need of awareness? Are we not worthy of some attention so that others can understand and make informed decisions regarding their cancer risks and options?
What about the term co-survivor for caregivers? People should be commended for their dedication to a cancer survivor and I challenge anyone to find a survivor that does attribute their success to the support and love of those around them. Caregivers are very much co-survivors. Cancer impacts a village, not an individual. Family and friend’s lives are turned around with a cancer diagnosis and minimizing that is not beneficial to anyone including the survivor.
I find it offensive that anyone would find “Previvor” and/or “Co-Survivor” offensive. I am not seeking attention, I am not seeking pity. I merely want to provide a place of knowledge and advocacy for greater information, resources and rights as well as provide a therapeutic place for me to lay out my feelings, emotions and experiences.
Today I am feeling particularly emotional hence a more emotionally charged post. There are a number of reasons, but to list a few, I am not happy about my hormones and I know I need to go back and see what other options are out there for me. I am tired, extremely tired, as we lost power last night and needed to crash at Jessica's house for the night. And I miss my mom. I miss her every day, but on day's like Valentine's Day, a day where she would always go out of her way to get Ray and I a thoughtful gift. We got Andrea and Jackson some gifts to carry on the traditions she started. But it's a bittersweet day nonetheless. Thank you Aunt Deedee for the kid's gifts as well. They were very excited to get mail :)
Jackson has never slept well, since birth. He never slept through the night and rarely does now. We always though it was because of his weight issues and milk issues in later infancy. We wouldn't deny him a bottle at night because he needed to gain weight. We thought that we set him up with bad habits, what choice did we have?
However, at his 2 year checkup, Jackson's doctor noticed that his tonsils were very large. They call this "kissing tonsils". The doctor asked me if he snored and I didn't know. At the time Jackson never slept with us and we didn't use a baby monitor. As he got older and we started paying attention, we realized the he does snore. A LOT! I told the doctor this at his next visit to which the doctor asked me to take some video of Jackson sleeping for him to analyze. I did that and e-mailed it to him last week.
He got back to me yesterday that it seems, from the video, that he feels Jackson has significant sleep apnea. This is not too serious, but we need to treat it because it can impact his rest, behavior and if he were to have surgery, anesthesia is more difficult and dangerous on people with sleep apnea. We are going to see an ENT specialist as soon as possible. The pediatrician is recommending removal of his tonsils and adenoids. I am hoping for something less invasive.
Anyway, we have been dealing with this for the last few days between taping, emailing and calling for appointments. Thus, I haven't posted. I still need to call Mercy and start my laser hair removal. I am SO excited for that. I go back to the breast surgeon Feb. 20th. I will be at Mercy all day that day! Joy. Look for updates between now and then and of course afterwards.
Shameless Plug: Check out my Relay for Life Page! (Go to the tab at the top and follow the links)
I added them to the bottom of the BCRA Previvor page. I also uploaded an update of the film I linked. I have not seen this film, rather, I have read Joanna Rudnick's article in the Chicago Tribune Magazine. I hope to watch this documentary in the near future. However, her story is that of life changing decisions and it's powerful. Enjoy!
I am amazed at how many people I have encountered the last few weeks that want to know every piece of BRCA information because they are in the midst of considering testing, testing, being positive or considering surgery. I am so honored and moved that I can share this experience with as many people as possible. If you have questions, information requests or general feedback, I'd love to hear it. I am going to make a new section with books, articles and videos about BRCA. Look for it by the end of the week!
A great place to start is the FORCE website complete with member forums.
