For almost a year

In the word’s of Meredith Grey…”I’m in my dark and twisty place today”. Which led me to check on this blog of mine. So I log in and realize it has been a year since my last blog. And ya know what else I realized? For almost a year I haven’t had a “dark and twisty” day because of my IF issues!  I’m not sure if anyone will read this or care to even open it. And I’m okay with that. Blogging makes me feel better for some strange reason so blog I will…

I suppose I should start with an update regarding my last post, which you can find  here in case you are curious.

Here is the short version: I had a mole on my knee 20150827_170529biopsied at the end of September 2015, the derm called me to confirm it was Melanoma (skin cancer) at the beginning of October,
excision surgery (plus sentinel lymph node biopsy) happened October 16th and to be honest…the rest is kind of a blur. The surgeon got clean borders and my lymph nodes came back negative! In plain english…the cancer had only spread to the skin around the mole (it hadn’t reached my lymph nodes!!!) and the surgeon got all of that out. I am currently cancer free and being monitored by
my dermatologist and oncologist. This was a very scary couple of months. The original lab results (the ones that revealed the mole was cancerous) indicated that it had spread to my lymph nodes. Which means it could have already spread to my organs as well. So going into the excision surgery I was under the impression this could very well be just the beginning of a long and aggressive cancer
treatment. I’m grateful that wasn’t the case.  Before and after picture…
20151022_155205

 

So now that you’ve been updated here is the point to this post.

For almost a year…..my day wasn’t filled with thoughts about my IF or dr appointments or pee sticks or a sale at my local pharmacy on pee sticks or BFNs or how to manage the cost of IVF…and so on. I certainly did NOT enjoy being treated for cancer, surgery, fear, drs, needles…etc but I can’t deny the fact that a little part of me enjoyed the break! The break from infertility! Somehow the pregnancy announcements didn’t hurt as bad. My life didn’t revolve around appointments with my RE or GYN.  When my family asked how my last appointment went…My response used to be something like “Well, I’m still not pregnant and my hysterectomy will be scheduled soon”. Instead my answer was “I graduated from monthly checkups with my oncologist to every three months and look..I can bend my knee almost all the way now!!!” My heart needed the break. My head needed the break. My spirit enjoyed the break as well.

And now? Now that I’m in the clear with Melanoma,, now that I have almost all of my motility back in my leg/knee? Well now the break is over!!! I saw my gyn a couple of weeks ago for the first time since my melanoma diagnosis. It’s time for my annual exam and she deserved an update. Last thing her and I talked about was my upcoming hysterectomy. She was just waiting for me to call her scheduler and get the surgery set up. Which I never did. After filling her in, we discussed the hysterectomy I never had. So now, all of those things I mentioned getting a break from, they’re back. With a vengeance I’m afraid.

Today it all hit me. My life is no longer about kicking cancer’s ass! It’s once again about being the poor, damaged housewife who suffers in silence. The girl no one understands.  Who cancels plans because she is too emotional to focus on anything. The one who will never conceive a child of her own.

It is now clear to me that women who suffer from infertility suffer just as much (if not more) emotionally as they do physically. I didn’t feel the need to blog, not even once over the past year while I was being treated for Melanoma. It was scary and painful and emotionally consuming BUT I never even considered blogging about it. I knew I caught it early and I KNEW I could get through it, no matter the outcome. I carried myself through the entire process (with the help of PC of course). With my IF, I’m not as certain I will make it through it, no matter what the outcome may be. So I lean on others who have been there. I’m sure as I go through this hysterectomy I will be on here more often. I thank all of you for being here. For sharing your stories. Even if you don’t comment on my posts, I read yours and they are inspiring, raw, honest and so real. I appreciate that. I’m sorry this turned into such a long post. I hope you have all had a great year.

Much Love to all!!

 

Not my choice

My dermatologist called this morning with the results of my biopsy.

The mole – or more accurately the funky darker blob on top of the mole – is malignant. I have skin cancer. Melanoma. I was experiencing some anxiety while I was on the phone with her so I don’t think I retained everything she said. And it is still sinking in. This is what I now as of now:

  • I caught it early.
  • She referred me to a surgeon. A plastic surgeon for some reason.
  • She wants me to start seeing an oncologist.
  • The plastic surgeon will perform the surgery I need to excise more of the skin around where the mole was.
  • Based on the results of the biopsy my dermatologist took, he will also biopsy my nearest lymph node during said surgery.
  • I do not know what stage it is yet. I believe the surgeon (or results after surgery) will tell me that. If I compare what the dr said this morning with my quick glance on webmd, it is likely stage 1, bordering stage 2.
  • I will see my dermatologist every three months for a full body check looking for other melanomas.

I don’t know what to do now. I don’t plan on telling anyone. Growing up with a psychopathic attention whore has made me want to keep my whole life on the down low. I don’t want anyone to EVER feel about me the way I feel about her. Eventually I’m sure I share with my closest peeps but for right now I will just keep it to myself. Except for PC of course, and you guys. I decided to blog about it for a couple of reasons. While I am still in the “diagnosing” stage of this my thoughts are directed towards my IF struggle.

I am frustrated that my hysterectomy will AGAIN have to be put on hold for yet another surgery. Is this a sign? If you believe in that kind of thing (I certainly do) is this a sign that the hysterectomy is not the right choice for me?  Every time I get close to scheduling it or at least being “ready” to, something more pressing comes up. Maybe I don’t have endometriosis and G#D or the universe, or whatever you believe in, is trying to tell me that before I go through with the hyster for nothing. If so, I better find out what is really going on, like right now right now. I don’t want these “distractions” to get any more serious than this! Technically, the hyster is optional. I could choose to treat my symptoms in another way. I don’t have a choice with this melanoma. Which leads me to my next point.

I don’t have a choice!

I don’t have a choice!

Ugh!!!!! That bothers me so much. If you only look at the way I handle myself, I am a total control freak. Ex: When PC and I go somewhere, I drive. I trust his driving completely. Has nothing to do with that. But I feel more comfy if I do it. The part of surgery that scares me the most is being “out”. I have no control over my own body while I’m out. And in the IF area….I’m not in control. Being infertile is not my choice.

I like having choices. I like having options. I like making my own decisions.

I think I am going to distract myself with some extreme couponing today. It’s a new hobby I have been looking into. I hope everyone has a great weekend!

Much Love To All!

Cold feet or valid concern???

I may be chickening out on my hysterectomy. Maybe it is just cold feet. I know that is quite possible. But I can’t help wondering if this hysterectomy is the best option for me. I had some of the same questions before my gallbladder removal and I only regret not doing that sooner! So…again…cold feet???

So this is where my brain has been lately…

My hormonal imbalance.

My symptoms have been significantly improved since gallbladder surgery. But they are still there. Not all of them of course  but some. For example, the panic and anxiety. Pre-surgery it was almost all day and it was certainly every day! Post gallbladder surgery it’s just occasional and very unpredictable. I also still experience dizziness, lethargy, lack of energy, feelings of dread…etc. These symptoms are occasional and unpredictable as well. I haven’t kept a journal of these symptoms. I know it would have been helpful if I did but have you tried to focus on anything while having a panic attack? It’s not exactly easy to do.  But I sat down the other day trying to remember my last few panic attacks and I feel like they all happen around my cycle. So are they hormone related? If that is the case, then I have a million questions.

  • How will a hysterectomy (leaving the ovaries) affect me regarding these symptoms?
  • Will my ovaries still prepare my body for a period every month even though I won’t have one?
  • Since a hysterectomy probably won’t fix my hormone imbalance, then will I still have to address that issue after surgery?

I will be asking my gyn these questions and more, soon. The whole purpose of the surgery is to hopefully feel some relief from the Endometriosis. But what if I don’t even have that? I mean, my gyn is convinced I do but I never had the lap to confirm it. She is so convinced that is what I have that she said it wasn’t necessary to do the lap because she could excise while she’s in there for the hysterectomy. But have you ever researched the symptoms of hormone imbalance? The symptoms fit perfectly. At least in my case they do. And I know I have an imbalance based on my lab results for the past few years. My previous gyn told me I had PCOS. My current gyn says I may have had that at one point but I don’t have it now. Talk about confusing!! All of the symptoms I have mentioned in this post so far are also symptoms of a plain ole hormone imbalance.  So do I go through with this life changing surgery or not?

Being nervous about this surgery, among other things, has kept my mind pretty busy. Busy enough to not even worry about the “thing” my dermatologist biopsied last Monday. I was proud of myself for actually going to that appt. I didn’t have a full panic attack or anything. It hurts like hec now though. She left a darn crater in my knee where this mole thingy used to be but I’m glad it’s gone. I tried my hardest to turn all empath feelings off at this appt but I couldn’t. She sounded calm but she looked worried. She actually looked very worried. She gave my arms, legs and back a good once over and said everything looked fine.. But when she saw this stupid thing on my knee she calmly said “Yeah we need to biopsy that right now!”. That’s all she said the entire appt. Last time I went to her she was pretty chatty. Very detailed, asked a lot of questions…etc. Not this time. The nurse who (attempted to) numb me up was very sweet. She heard me telling the doc that I wasn’t sure if my skin problems were hormone related or not due to my IF issues. That may be why she shared her own infertility struggles with me.  She almost looked relieved to hear my story. As if she finally had someone in her daily life who understood. I felt sadness for her troubles but somehow that connection kept me calm through the biopsy part. The lab should be calling any day now with my results. Fingers crossed…

Much Love To All!

My Picture in Picture life – A letter to my loved ones

Dear Family and Friends,

I have a few thoughts I would like to share with you. Many people in my situation find themselves writing letters like this to their loved ones in order to effectively share their feelings, thoughts, emotions and needs. It can be very helpful to everyone involved. I have considered it many times before but I am not good at the explanation kind of thing so it would have just been a bunch of jumbled up words, accompanied by some raw emotions (that I don’t like sharing in the first place) and I don’t believe it would have been very useful. It probably would have just been sad.

Until Today.

This morning I ran across a comment on the Resolve facebook page. This anonymous lady mentioned living Picture in Picture and I though…what a great way to explain my situation to family/friends. So I borrowed this metaphor and made it personal. I will try to be short and sweet here but nothing about my life right now is short and sweet (except for maybe my good days) so please be patient.

I live my life through “Picture in Picture”.

You know, the tv feature most tv’s have these days. Let’s begin with the definition…

Picture-in-picture (PiP) is a feature of some television receivers and similar devices. One program (channel) is displayed on the full TV screen at the same time as one or more other programs are displayed in inset windows. Sound is usually from the main program only.

Picture-in-picture requires two independent tuners or signal sources to supply the large and the small picture. Two-tuner PiP TVs have a second tuner built in, but a single-tuner PiP TV requires an external signal source, which may be an external tuner, VCR, DVD player, or a cable box. Picture-in-picture is often used to watch one program while waiting for another to start, or advertisements to finish.

Thank you Wikipedia… Now, allow me to elaborate.

I live with more than one reality every day of my life. One reality is on the full screen and my other reality is on the inset screen in the corner. On one screen I am living a child-free life and loving it. I have an amazing home, a few great friends/family, PC and more. If I happen to be having a bad day, which means my symptoms are overwhelming, this is the screen my health is on. Especially on days I have doctor appointments and such. On the other screen I am infertility, chronic illness and upcoming surgeries. I am devastated that PC and I will never have biological children. I am trying to grieve the loss of that dream and life and at the same time trying not to let that grief control or define me. If I’m having an ok day (my symptoms are calm for now), this is the screen my health is on. Both screens are usually full of “commercials” about managing my symptoms, anxiety and depression.

The part that makes this PiP life so complicated is the fact that on any given day EITHER reality could be on my full screen and the other on the inset screen. I never know which reality will be on which screen. Nor do I know which one will be louder than the other. And that is the “zip file” explanation.

At all times throughout the day, I can see both screens!

I can hear both screens.

I can feel both screens.

The batteries in my remote are dead and for right now, there is NO WAY to turn this PiP off.

Can you imagine watching “Titanic” and “The Sound of Music” at the same time, all day long??

Do I laugh, cry, smile, frown, run and hide, what????

So I ask you to consider/remember the challenges this PiP life style can present when:

  • I don’t answer your phone calls or texts
  • I do not attend functions or gatherings
  • I am unable to go the extra mile to help someone out
  • I do not celebrate special events/occasions the same as I would have 5 years ago
  • You are teasing me for being unemployed
  • You are feeling ignored or neglected by me
  • You are wondering why we don’t “just adopt”
  • You are questioning my decisions, about anything
  • You are wondering why I avoid any and all drama I possibly can
  • Planning celebrations
  • Planning any sort of announcement (pregnancy or otherwise)
  • and so much more

Understand that I love you and I am doing the very best that I can. I begin each day with a limited amount of mental and physical energy. How can you help?

There are only 2 ways I think you can help me right now. One is Patients! Self explanatory, right? And the other way is Understanding. The best way for anyone to understand what I am going through is to learn more about chronic illness. CLICK HERE to read the absolute best explanation of what someone living with a chronic illness goes through daily. It’s called “The Spoon Theory” by  Christine Miserandino. I beg you, Please read it.

My Pip life costs me several spoons a day.

Much Love To All

Foggy Brain Blogging

I know one of my pms symptoms is a foggy brain. So I must assume that is what I am experiencing right now. If I do assume this, then posting is probably not a great idea. It feels like the equivalent to drunk dialing. But I will proceed anyways…So bare with me please.

I’m laying on the couch “enjoying” these crappy pms symptoms and noticing once again that my tummy is giving me trouble. The past week or so has been tummy trouble free with the exception of one very stressful evening. I am convinced the endo contributes to probably most of my tummy troubles. But I’m beginning to wonder if the endo is the only thing contributing to my symptoms.

Is it solely the endo or is my hormonal imbalance playing a part? The hormonal imbalance was mentioned years ago but that was when they thought I had PCOS. After moving on from that diagnosis, it hasn’t been mentioned much and only treated with several unsuccessful BCP treatments.

These thoughts provoke so many questions for me…

  • Is there any way for me to know for sure which one is mostly to blame for my tummy troubles, endo or hormones?
  • If the hormones are to blame then I’m worried the hysterectomy will only relieve me of some pain and none of the other symptoms. (my gyn is leaving my ovaries)
  • Although, without a uterus and cervix, my ovaries won’t do what they do now every month, right??
  • So if that’s the case, then I won’t experience all of these symptoms?
  • But they will still work for something (the ovaries that is) which is why we are leaving them. I am not ready for menopause and I’m scared of hormone therapy.

Again, I’m not changing my mind about the surgery. Not having a period every month, along with this excruciating pain, is worth it for me. I just want to be prepared for what I may still be facing after surgery and how I should handle it. If there is something the doc can do during surgery (or not do) that would be affect that “after surgery” experience for me, I want to know.

Some days, this whole thing makes perfect sense and then days like today, I find myself feeling confused and asking tons of questions. Maybe I should just schedule the surgery and get it over with. I’m still very nervous about having surgery again but just as I did with the gallbladder removal, I keep reminding myself of the tremendous benefits and relief I will have. If I focus on the good, maybe my nerves won’t be as bad.

If you made it this far, thanks for hangin’ in there with me. In a few days I’m sure my foggy brain will feel better and this will all make sense again.

Much Love To All

Music Monday anddddddd I met a real life infertile!!!

Technically this is sad news so I apologize for using an exclamation mark, insinuating mucho excitement. But for those of us who can only relate to people that are in the “same IF boat as us” by logging into this fabulous world of bloggers we’ve discovered floating around the interweb…this is kind of exciting!

PC and I were invited to one of his co-workers house last night for an informal get together. A handful of co-workers were going to be there and a few of their wives. One wife in particular was said to be very shy and hadn’t attended any functions in the past 3 years her husband has been employed there.

Well said wife was there when PC and I showed up and it took her and I approximately 32 seconds to click! I was excited about meeting her because it is rare for the wives to be on the same schedule as our graveyard shift hubby’s. We chatted like we had known each other for years. It took several hours for us to get on the IF subject. She was explaining this diet she has been on and how successful it has been for her so far. Then she mentioned that is was even calming her periods down, which she was very happy about. Apparently this diet has caused her periods to become significantly lighter. I responded by sharing with her (bluntly and with no shame might I add….) that I have Endo and am infertile, and she immediately revealed she has PCOS and has only a 25% chance of conceiving naturally. You know those conversations we have on here that we know for sure would offend at least half of our fertile friends (only because they wouldn’t be able to relate), yeah I had one of those with a real life human being! Face to face! We shared our versions of the “what to say and not to say”, we complained about our daily reminders. Which activity is hardest for us…grocery shopping or family/friend gatherings…

I suddenly felt NOT alone! At a gathering full of fertile men and women, which is usually the kind of place that poses the most emotional struggle for me. I was sad to hear her struggles and to know what she is going through but selfishly I was holding back tears of acceptance at the same time. I found myself feeling less ashamed to admit PC and I don’t have children. I wasn’t watching over my shoulder to prepare myself in case the host’s 2 year old woke up. I realized I didn’t have to choose my words as carefully in front of her. I spoke freely. I could literally be myself. No shields (ready and waiting for someone to do or say something that isn’t going to sit well with me). My real self, even if I had a sudden “daily reminder”!!! I never did have one last night but maybe it’s because I knew I could and I wouldn’t be judged for it so I paid less attention. I wasn’t on edge waiting all.night.long. I could breath. Just for one evening out. I could breath.

I am so sorry for her pain and suffering.

I am sorry to the host’s wife whom I feel we may have ignored because of our instant connection.

I’m not sorry that I felt safe and accepted and had a great time, when I wasn’t really expecting any of those things last night.

Maybe I should start a support group in my area. I kicked the idea around before my gallbladder spazzed out on me. I think I will look into it again. I think it would take a lot of time and effort on my part but if I could help even one person feel like I felt last night, like it IS possible to feel safe, comfortable and accepted somewhere other than your own living room couch….it would be more than worth it!

I hope you all have a great week!

PS… Here is my Monday Music and for those of you that know me well…yes I already sat down and learned it on my piano. I still have to practice but I have the basics down. Why didn’t anyone tell me most songs revolve around the “Heart and Soul” chords?? Ugh!! I love music.

Much Love To All!

One layer of bricks at a time…

The house hunting nightmare is finally over!

We are all moved into our new home. And I absolutely love it!! My gut lead me to the best of the best real estate agents and she turned out to be a total rockstar!living

The house has almost everything we were looking for (we still have community mailboxes, blah) and then some.

I feel like a princess. I grew up very poor and not in the best of neighborhoods. PC and I are happy with less in life. We buy generic products. We don’t go clothes shopping, we buy an article of clothing at a time (or two)… We are pretty simple people I guess. We grew up with less so we are satisfied with less. Even if we won the lottery, I would still frequent the thrift stores and that is a fact!! So the past 2 weeks have been emotionally shocking to me. I have cried more than I thought I would. Every time the neighbors, even the ones we haven’t met yet, wave…Every time I hear that cute little ring tone my fancy washer and dryer play when the clothes are done….Every time I use my microwave and it doesn’t take twice as long as it should… I tear up. The gentlemen next door was using his leaf-blower yesterday as I was getting home from the store. He turned it off and met me at my front door to introduce himself. He welcomed us to the neighborhood and said if we ever need anything to let him know. He and his wife are an older mexican couple. After chatting for a bit, and while using both of his hands, we shook goodbye. I mention the fact that he shook my one hand with both of his because I grew up understanding that as sign of respect. I don’t know if it’s a southern thing, or a generation thing or what but it meant a lot to me. And as an Empath it was even more meaningful! I walked in my door and cried my way to the kitchen with my bags. He could have just waved, or even nodded his head because both of his hands were occupied but he didn’t. He went out of his way to meet his new neighbors! The neighbor on the other side did the same thing earlier this week when PC and I were heading out. When we returned home later that evening, this gentleman had brought our trash up for us. I think I was born in the wrong era!

It feels like a layer of bricks has been lifted off my shoulders.

I can breathe for a minute.

As for everything else…

  1. PC and I still haven’t discussed the Hysterectomy in depth. We tossed around the idea of waiting until after his birthday in a couple months, since he just took time off for the move. Other than that, he still doesn’t like talking about it and I don’t want to spoil our current moods by bringing it up.
  2. I am still having “bad days” thanks to my tummy but I am starting to wonder if it is related to my girl problems. I have come across several articles about women who had tummy troubles until their hysterectomy. They also had (as do I) a retroverted uterus. This plays a significant role in tummy trouble from what I have read. My troubles are worse during my period but I still have symptoms off and on for the rest of the month as well. I’m hoping surgery will help with these symptoms!!
  3. I get to see my niece next week. I still haven’t spoken to my sister but she is dropping my niece off at my mom’s for a week before school starts back up. I miss this child so much!! She won’t be spending the night but I will have her room ready for the visit anyways!
  4. I am hesitating to make an appointment for my dermatologist. I have a mole thingy (official terminology right there people) that itches but hurts if I scratch it, on my knee. I’m sure it is nothing but it does cause me stress. I haven’t seen my derm in years. Well, I kind of ignored all of my other health issues while dealing with IF and then I ignored the IF to deal with the more pressing gallbladder issue. Boy getting older sucks sometimes…

Have a great week everyone. As for me, I will be working on my next layer of bricks…Hysterectomy.

Hopefully once we get settled in here I will get back into a normal blogging schedule. I am at the point in my blogging life where I wonder how you all are doing when I don’t get on for a while.

Much Love To All!