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Well, it has been almost a week since I started my new hormones. So far they are the best yet. I have not been sick again although I have to make certain that I eat before I take them. If I don't or if I don't eat enough, I feel very sick. My moods have stabilized more and some people have said I look better. I am so hoping this lasts!
I have my next "phase" May 8th to redo my hips. They are still "dog earred" due to scar tissue. This will be completely minor, local, in office, out patient kind of thing. I start my laser hair removal March 15th. I will go every 6 weeks for 5 sessions. After that I will set up a time to get tattoos. I will need to do follow-ups with the breast surgeon or his phycisians assistant every 6 months until forever. I am considering moving closer to Baltimore since I am there every week practically.
The Relay for Life is going so well, I couldn't be happier. I am so passionate about this cause and this event. I am thrilled that I get to be part of it. We are on track to blow our monetary fundraising goal out of the water this year and I am so proud of that! If you are curious, check out the links in the Relay for Life Tab!
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.
I remembered that I didn't blog about doing my last will and testament before my surgery. I highly recommend doing a living will, durable power of attorney, guardianship and will before any major surgery. We don't like to think about it, but if the "what if" happens, your family and loved ones will be grateful that you set up your wishes in a easily accessible way. I gave copies of my documents to my surgeons, and my husband had copies in the waiting room.
On a more positive note, I ran for the first time last night! I waited 6 weeks post op to try more rigorous exercises. I feel that you will know when you are ready and the guidelines the surgeon gives you are "suggestions". Now, "I" wouldn't workout before they recommend, but I also didn't feel like a failure by waiting longer. Slow and steady, but I had no pain. I am excited to start working out again. I plan to join the community center by my house and get back into the swing with my workout buddy!
I have been a tummy sleeper for as long as I can remember. I LOVE it! I know it is bad for your back and is a sign of insecurity, but I love it and a rested me is a better me. However after each surgery, ever in my life, I am unable to sleep on my tummy for an extended period of time. As if romping kittens and two toddlers doesn't mess up your rest enough, now I am tossing and turning trying to get comfortable. I am "cleared" to stomach sleep, but it feels like I am sleeping with two rocks under my chest. And I have an incredible fear of messing something up or worse, popping an implant. So for now, I am trying to be a side sleeper. It's not going well.
I think a lot of thoughts that factor into my positions on a lot of issues. For example, I think a person's political and personal belief can be different. I think words have power and can mislead or misconstrue more easily that people give credit. I also believe that regardless of your political affiliation, this country will not continue to thrive if we can't see the trees through the forest so to speak. You must be able to see right from wrong even if it disappoints you that "wrong" might be coming from your "side".
I am conflicted over this Susan G. Komen (SGK) controversy. I know what I have experienced and I feel that people attacking SGK is rather ironic. If they are succumbing to political pressure as everyone is shouting, then why not attack the pressure? Because you expect that behavior from conservative pro life groups? So do you then ignore the bully and blame the victim because you expect such behavior from the bully? Seems pretty silly when you put it in another context.
Further, it makes sense, like it or not, that organizations not grant funds to other organizations under FEDERAL investigation. I do however feel SGK was correct in re-evaluating their stance and specifying that they will only disqualify those who are convicted of CRIMINAL investigations. I was proud that they had the gull and ethics to see they were being unfair and fix the issue.
In talking with people about this issue, I have had more than one person mention that abortion increases a women's risk of breast cancer later in life and thus it seems counter productive for SGK to fund Planned Parenthood (PP) to begin with since PP performs abortions in some clinics. Well, let's set the record straight. Abortion does NOT increase a woman's risk of breast cancer. Period. (source)
The only way this could even remotely be construed is by saying that if you abort a fetus, child, tissue, whatever you deem it to be, then you obviously aren't breastfeeding it. Breastfeeding decreases a woman's risk of breast cancer later in life. BUT, this is a huge but, NOT breastfeeding doesn't increase a woman's risk. It doesn't work that way. Something decreasing a risk doesn't mean that if you don't do that you will have a higher risk than you would otherwise. The word increase indicates that you have raised your probability beyond a baseline. Whereas decrease means you have lowered your probability below your baseline. They are not mutually exclusive. So while having an abortion takes away a woman's ability to decrease her risk of breast cancer by breastfeeding, in no way does it increase her risk. Further, it is incredibly insensitive to allude that woman who suffer miscarriage or still birth are in anyway more at risk. In fact, they are not.
Women are women's worst enemies; as history has repeatedly proven true. Sad, truly.
I watched the movie 50/50 tonight with Ray and my dad. It was funny, heartbreaking and offensive all in a compact 90 minute low budget film. I liked it because I felt that it focused on the patient's perspective of everyone around them. It highlighted annoyances like people constantly saying "It's going to be okay." Or saying "I am sure you are feeling shocked and numb." in response to a patient saying, "I feel fine." If anything, I hope people watch this movie and learn to better validate their patient's feelings instead of projecting their own.
I don't want this to come off "judgy". I made mistakes as a caregiver. I had moments of insensitivity. I remember feeling frustrated at my mom's lack of energy level, or her reluctance to go to my last sonogram. I know she was feeling bad and tired, but I wanted her to be there. I tried to hide my disappointment, but she knew and I regret my feelings to this day.
The movie is very heavy in language. Even the "C" word that I detest. But for what it accomplishes in terms of advocacy, I rather enjoyed it.
The one line I distinctly remember, "The more syllables in the cancer, the more serious it is." Breast has 1 syllable. Ovarian has 4.... I am in no way down playing breast cancer. I just found that ironic.
Check out my Relay for Life tab and view the new slide show on what Relay is, what you will find there and how to register! I am honored to chair the event this year and I am so excited to see our numbers grow DAILY! Yes, daily we are registering more teams and participants.
Here is my personal fundraising page if you feel incline to give. I would really be grateful for anything spared.
My next follow up is February 20th. I will see all three surgeons! It'll be a long day. I will update afterwards for sure, but keep checking for updates between now and then :-)
I know many, even most, people have issues with their insurance companies. I am just so thankful that to date our health insurance has been very accommodating and helpful. They covered Jackson's prescription formula which made our $700/mo. tab only $350. That is huge! Anyway, I just found out today that they will cover 5 sessions of laser hair removal for me!
Allow me to explain. When I had my DEIP flap reconstruction, abdominal skin was used to fill the space where my nipples were. My stomach skin (as any Greek woman can tell you) is liken to my arm, its HAIRY! All was well and good for a while after surgery, but it became clear relatively soon that even with tattooing, there would always be this hair on what was to become my nipples, and it was very visible.
I asked my surgeon and the Mercy Hospital MediSpa to apply to my insurance for laser hair removal. They were a bit reluctant as I guess previously it was denied. Well, I found out today that I qualify for 5 sessions, which is the amount recommended to adequately remove the hair permanently. That is about $500 of coverage! I am thrilled and feel very thankful to have such great insurance. I fully understand how lucky I am and I am very grateful.
Susan G. Komen Foundation has Announced an End to Planned Parenthood Fundraising
In my experience walking in the 3 Day Walk for three consecutive years and fundraising over $10,000 for Komen, I personally met people that were unwilling to give to the 3 Day because Susan G. Komen granted money to Planned Parenthood. People have various beliefs about Planned Parenthood, specifically around the issue of abortion. These particular people felt that they were not willing to donate money that could then be granted to Planned Parenthood which could then be used to fund an abortion which in turn compromised their morals and/or religion.
The issue of greater good, or what we history teachers call "common good" comes into play here. Was Susan G. Komen losing fundraising dollars to the extent that dropping Planned Parenthood benefits their income thus research and awareness? I don't know the answer to this question, I am merely posting a perspective. Is the greater good worth the sacrifice of women and men that use Planned Parenthood? Its not nice to exclude anyone, but in reality, this may be a necessity to continue for the majority.
While I am VERY pro-choice, and I don't like the loaded words in the first part of this quote (found in the above linked article), I do see the last part as relevant to the discussion:
Bradley Mattes, executive director of the Life Issues Institute wrote: "The continued, collective efforts of the pro-life movement have paid off. Our work to educate Komen donors to the reality that the organization has financially supported the nation's largest chain of abortion mills has caused Komen to halt the financial hemorrhaging. Evidently, Komen had to choose between political ideology and financial viability. They made a good choice."
I don't like it. But I can't say at this point that I don't support their decision. What are your thoughts?
