Frustrated.

So my mom went back to work on Monday of this week after being off for about four months. She was happy but hesitant to go back. She told me that she wasn't sure if she would have the skills anymore. She's been with the company for more than 20 years.....she has the skills.

So off to work she went on Monday. She's working half days this week and going to full days next week. Everything has been going smoothly until she calls my little sister today and says that her right leg keeps going numb and she can't walk. BUT DON'T TELL YOUR SISTERS. I just want you to know in case I have to have you pick me up from work because I can't drive.

WTF. Not tell your sisters. So of course my sister calls me, I call the doctor and find out that mom has already called him. In the notes it says that he has called her back, but the nurse isn't sure what he said or if they even talked. The nurse said that it was imperitive that mom speak with the doc, so if they haven't chatted, have her call him back.

I relay the info to sister, and she emails ME AND MY MOM with this:

Mom – can you call Dr. Greenfield? He wants to talk to you. You might have to go in today. I can pick you up from work if you need. And I told Jessie and Katie – because they need to know. We all care about you and want to know what’s going on!!

Love you!

---

Daughter -
I am at work but had to call the Dr,. because my right foot keeps going numb.  I will let you know if I need you. Please do not say anything to Katie or Jessie yet since it is probably just that I am so out of shape. Please reply to this email if you will be able to pick me up at work if needed.  I am waiting for the Dr,. to call.

Love you
Mom

This truly made my heart smile. My little sister standing up to my mom! So I guess we'll play the waiting game now and see what the numbness is all about. Just so very tired of my mom doing the whole divide and conquer thing. It's fucking annoying.

My thoughts on Boston and a few other things

I've never had a national tragedy hit as close as the events at the Boston marathon did yesterday. An extended family member was running and I called and texted everyone I could until I heard that she was alright. It was an awful hour or so, my mind was spinning out of control and I was shedding a few tears for the people who were directly impacted.

It just seems like every few months, we as a nation are brought to our knees. School shootings, movie theatre shootings, and now marathon bombings. What on earth are we coming to?

As I was pondering this, I wandered over to my friend's blog and this is a verse she had posted just a few days before:


Psalm 37:1 - 11

Amazing, right? The wicked will eventually be taken care of....but for right now we have to deal with the aftermath while they get away. One day, soon hopefully, we will see the faces and hear the names of those evil, wicked people. Until then, we must remain a strong nation and wrap our arms around the victims and those who are going to be traumatized by this for years to come.

It also pains me to think that this tragedy happened on my baby girl's fourth birthday. A day full of sunshine and sparkles for Sadie Faye while many were weeping. How can I have such a high high one moment and then sweep to such a low, low? At moments like this, I wish I were still on the Zoloft! Maybe it could help regulate all of my thoughts and feelings....but not to be with this little pumpkin growing in my belly. I just have to talk to people about how I feel and know that it is going to be alright. It is going to be alright. One more time.....it is going to be alright.

I have lots to write about my mom and dad....but for now, I just want to leave this as is. Thanks to my gal pal for posting such an amazing verse. I'm not a super religious person...but this really opened my eyes and is providing a bit a solace.

Just a note - slightly gross

Just needed to write this quick so that I don't forget........mom has a pretty severe bladder infection and has been peeing herself. Kinda hard to hear from your mom that she's pissing herself. But! It's better than last chemo when she was shitting herself.

I asked her how the oral chemo is doing and she has assured me that all of her lesions are flat. We'll see about that......

As I write this, I know that I have some readers who may be disturbed/saddened to hear this. Before I took this blog semi-public, I used to write my feelings and thoughts down without abandon. I wanted to do that today, to make a note for my future self. Instead, I hemmed and hawed over whether this was the right thing to do. I guess now that I am out, I have to realize that everyone can see this. Sorry if I've made you uncomfortable, but that is exactly what stage four MBC is. Un-motherfucking-comfortable. Blah.

Struggling

I've been struggling today since about 5:00 a.m. when I woke up, knew it was my birthday, and also knew that I wasn't going to hear my dad's voice today. I laid in bed, cried for a good while, then finally fell asleep before my alarm for work went off.

Last picture together...surreal

The enormity of all this is too much for me to take in I suppose. I mean, today I am 34 years old. Am I really NEVER going to talk to him again? I guess the past few months I've been fooling myself that, "well it's not like I saw him every day...he was in TN." True, I may not have seen him every day, but I could call him whenever I damn well pleased.

I keep hearing him say "Hi Honey" in my head. Over and over. And as I wrote that, I started crying and I just so happen to have one of his Browns towels in my office which caught the tears.

Man, I feel like I am in such a funk. With a capital F. I realize that this is also the third birthday in four years that I have been pregnant, which could be contributing to the sadness. It's just not fair. As I posted today, this is the many of "firsts" that I have to deal with without my dad. It fucking sucks.

I thought of this little diddy for FB and I'd like to share:

34 years ago today a boy became a father and a girl became a mother.....that is something so very special. Thanks to everyone for the birthday wishes, I have to say it's a bit of a struggle today without my dad. I guess this is the many of "firsts" with him gone now. Thankfully I have a wonderful family, loving husband, supportive friends and a sweet little baby on the way. Thanks to everyone for helping me to smile today ♥

And it's true....what a special moment for my mom and dad. I was born 34 years and about 14 hours ago....what were they doing that first 24 hours? How wildly did I rock their world? I can only imagine!

So, I'll say that I'm struggling. I'll put it out there. It's hard to get a big smile today. I just want to go to sleep/cry/be in pjs. Soon enough I suppose....

It was a "meh" kind of meeting...

I went to mom's appointment today and it was kinda frustrating. Her port didn't work, which totally set her off. So they couldn't do blood work (although after I left they were going to try again). Then she's been complaining that she feels like she has to go to the bathroom, only to get there and have a trickle come out. So they asked for a sample, she went in the bathroom and dropped the pee cup into the toilet. So she was frustrated again.

Doc came in, looked at her chest and there are more nodules on her chest. Not a lot, and not big, but there are new lesions. So I asked why that wouldn't have shown on the PET scan and he said because it's skin. She was also complaining about a lump under her left arm, he felt around and she was grimacing in pain, but he didn't feel anything.

He is going to order a bone scan, because they didn't do that with the PET scan. Mom also asked if she could start taking something to make her happier, so he is putting her on Paxil.

Now for the news you've been waiting for. He is taking her off of IV chemo. She is going on Afinitor and Aromacin, an oral chemo and a hormone blocker. He feels that mom has no life-threatening disease right now and that we can "safely" try the oral chemo. He said it is going to take awhile to see the effects, but that is the route he would like to take. Mom never even suggested it!

So, she'll actually start the oral chemo today. This makes me very nervous with her track record of oral chemotherapy not working. I do trust out doctor and he sees that mom needs a break. the oral chemo will take a longer time to work, so he tried to prepare us to not freak out if more nodules appear before they disappear.

I think I would have felt better with two more rounds of IV chemo BUT I will trust in Dr. G. and pray that it works. The above bolded words give me hope. Now to cling onto it for the next 3-4 months. Oy.

No Evidence of Disease.....Tada!

So I got the call from mom this morning saying that her scan came back CLEAN. And then she said, "the doctor said that there was No Evidence of Disease (NED)." And...boom goes the dynamite.

I could hardly believe it. I asked her if she was sure and if he was sure that there was no lung involvement. And she repeated what she had just told me. Whoa. Clean scan. Last fall we were told that we were losing the fight. That the disease was winning. That if we didn't move fast mom would die.

Switch doctors. New outlook. Hope. NED. AH-Mazing.

And then here comes the pesky but.....

Just because mom had a NED scan really means almost nothing. If you have time, take a few minutes to read the blog post below. It's from a girl named Jennie out in CA. She and I have been corresponding for about 4 months. I reached out on the Metastatic Breast Cancer Network to ask someone about the drugs my mom was taking. It so happens that Jennie was on those drugs and reached out to me. She had a NED scan a few months ago (YAY!), but here is her post a few days out.

NED does not mean the end!

Jennie is amazing.....if you took the time to read her story, I hope that it gives you some perspective on stage 4. Anywho, back to mom...

Mom will still be stage four. Mom will still most likely die from breast cancer. Mom will have to be on lifelong treatments to keep this mother fucker at bay. BUT....a NED scan is awesome. This is just how cancer is. It gives and takes. All the time. Gives you some hope....rips it away......gives you some sunshine.....drowns you in its ocean. It's hard to gauge your feelings sometimes.

But.....right now I'm just thankful that we are where we are in this cancer journey. A freaking NED scan!

Scan!

Mom has a scan today to see how the cancer is, or is not, progressing. We have an appointment next Monday for the results, but I am hoping that we'll find out sooner.

Honestly, I am thinking that she is doing really well. The main concerning thing is still the cough that she has had since October....hoping and praying that it hasn't disappeared from everywhere else and has gone to her lungs. But I am keeping my head in the present and (trying) not to freak out. Living scan to scan really sucks and it's very unfair. Just playing the cards that we are dealt......

Hopefully some good news will come our way!