Kindness, decisions and blessings

IF I have learned anything over the past 4 months (only 4?!) it is the unbelievable and amazing kindness people actually show towards one another. Especially our family. Cards, dinners, prayers, texts, quilts, flowers, gift cards, hugs, it is endless. One more delicious dessert, and I am going to have to buy bigger pants! Every time, I am immediately so humbled and amazed. We are truly not this deserving of so much love. I can only hope and pray that we are able to pay it all forward someday.  I hope that my children see and understand and appreciate all of this love bestowed on us. It is such a learning experience that I selfishly never considered before my diagnosis.

I have been at such odds since the question of 4 or 6 rounds of chemo have come up. It has completely rocked Johns and my "plan" so to speak. We had this "goal" of keeping our heads above the water for 6 rounds. The questions for my oncologist keep mounting by the minute. I spoke to him briefly about my concerns last week when I was in for my allergic reaction but didn't have my side kick (JW) with me and kind of shut down during the brief discussion. I understand the facts. I just don't think I will ever forgive myself if I don't go the whole 6 rounds originally planned and I do have a reoccurrence. The fact that I am triple negative, giving me upped odds of reoccurrence within the first 3 years, makes me want to fight like crazy- even though the numbers show 4 could be "enough" and 6 could be only adding permanent toxicity. I am NOT just a number...
 I am asking everyone to please pray for clarity and wisdom regarding this decision. And for the wisdom and grace to discuss it all with my oncologist next Friday before my 4th treatment.

We had such a fun time at the hockey game last Saturday! The girls happily completed their first 5k and have the medals to prove it! Thank you to the Simons Family for such a fantastic night! We were happy to see a win!

 

 

Trouble maker, luminaries and whatnot...

This is going to have to be quick as we have a very special night planned! We have become friends with a St. Gertrude family that just so happens the dad is the new head coach for the Cincinnati Cyclones hockey team! Today/tonight is their opening game and they have invited the whole family! Clearly, they do not know us very well. :) I can NOT tell you how excited the kids are to go! Which makes a guilty momma with breast cancer extra happy that we have been allowed this opportunity. Ellie and Sarah just left with the mom and her two girls to go and walk the Cyclones 5k breast cancer walk! Thank you Beth for taking them! I was THIS close to temporary insanity and so tempted to go and walk it with them, but after the week I have had, came to my senses.

My 3rd round wasn't so pretty (shocker?) I was very nauseous this time and made sure to set alarms to take my meds on time. Sunday was also our 13th anniversary... I spent it sleeping and John to soccer games. Not our favorite one but still are blessed to be married to each other!

The worst part besides just being run down was....

My allergic reaction to my one chemo med Taxotere  a week after chemo! Ugh! Thursday, Margo and I went to the kids school mass and during my head started itching like crazy. By the time I got home, my head and ears had hives all over them! Then my knees and elbows! Then hands and feet were swelling. Ugh again. After conversations with my sister, my bestie nurse Liz (props to Liz for calling allergic reaction and not shingles)  and the on call doc, I took a boat load
of Benadryl and the next morning, after the children's conferences, I busted over to the doctors for steroids and confirmation that it was an allergic reaction. It's actually not the chemo, but the Petroleum base they have to mix the chemo in. Ugh again. I am happy to say that the steroids are working, my rings are back on. And although still itchy, I am on the upswing.

The beginning of the week another surprise hit our front steps. Thank you Deb and Michele yet again for making us all smile and laugh. It was totally worth getting out of bed.

Henry, Margo and myself have started reading Charlotte's Web when we can all stay awake. John took this right after he woke me up. It's a good thing he didn't have to carry me upstairs to bed like he did with the other two!

So why doesn't my glass feel 1/2 full?

Before I get into my "troubles" I want to count my blessings.
* I am so blessed for friends working together to keep my children on as normal and fun of a schedule as possible. Thank you Amy and Ann for picking up Margo from school Thursday and taking her to play with your girls. She has not stopped talking about how much fun she had.
* A big blessing is my SIL Sue- she meets the kids from school on Thursday chemo days, takes them home, completes homework, snacks etc and then gets them ready for John to pick up for their many practices!
* Thank you again for my sweet bestie Melissa for yet again picking up all of my children and keeping them for the weekend and for schlepping them to games, birthday parties etc. but mostly for all of your love for them. Your friendship is truly one of my biggest blessings.
* For all of the text messages starting bright and early Thursday morning cheering me on this journey knowing that it is so mentally draining to yet again receive chemo knowing how I am going to feel afterwards but also knowing it just has to be done!
* To Michele for knowing that this round I needed just a bit more super power than just my underpants...

I seriously can't believe the "power" it gave me all through chemo. :) Although as I said in the text I sent, it got me into trouble a few times when people said " I like your shirt!" And my first reply was " thanks! You should see my underpants!"
* again for my special friends that quickly and quietly leave dinners and pumpkin bread and world famous homemade granola...  Thank you
* for my biggest blessing- John who is my rock at all times even when I know he is tired and exhausted from working 14+ hours a day. Who will always tell me it's going to be ok. And makes sure I believe him.
* I am blessed for little things... For a neighbor that always texts me when she is out on errands to see if I need anything. For her girls that happily play after homework is finished with my kids. For another neighbor that I just see has pretty magnetic fall leaves and a wreath on her garage. She knows I sit out in my "office" (porch) a lot. I just saw them this morning just when the sun was coming up. The first smile of my day- truly a blessing having her as a neighbor for 12(!)years now.
* For new neighbors a couple houses down. Their friendship is a true blessing. The many, many beautifully sewn scarves, the happiness their therapy dog brings me with just a pet or the look of his gorgeous eyes. For the prayers they promise and that I feel.

So, chemo #3 down. It went very well. Things I am surprised about during chemo. Seeing many of the same patients every time. You kind of get to know them, nod your head and smile, say hello etc. For the "friendship" that is formed and the comfort of the nurses there. I am always so happy to have Jen be my CBC drawer. She makes me laugh and brings me comfort starting my chemo process. Another nurse that John and I both adore. She was my first nurse to draw blood from my port (perfectly and painlessly so I will never forget!)  and is the nurse I have mostly had for chemo. Her compassion and smile are such a blessing. John and I are amazed how she remembers specifics about us- our children, our church, she remembered that she slowed the drip of the Cytoxan last time to see if it helped with the horrible headache I had the first round! It did and she did it again. Thank you Anita you have made a huge impact for me on this journey.

Now, for the curve ball. That I really don't know why it has thrown me for such a loop besides mentally I have a picture in my head how this whole cancer/chemo thing is going to be played out and it ends with happily ever after. And really it isn't even a given so I don't know why I am even allowing it to get to me. Thursdays chemo went well. We saw Dr. W., blood work looked good, I am a little anemic but nothing to be concerned about. When I told him that my symptoms were not as bad as my first round but that I just felt constantly exhausted. He said that is very normal, will get worse, take a walk every day and rest when I can. Gotcha, I can do that. He said I was 1/2 way done for treatment and happily corrected my math that I will be finished with my 6th round BEFORE Christmas!! Not the first of the year like I thought! Yeah!
Then Friday, I go in for my Neulasta injection and run into Dr. W. in the hallway. Here comes the curveball... He says hi, I say hi and then he says " I've been thinking, I think we are only going to give you 4 treatments instead of 6 but we can talk about it next time" I reply " that makes me really nervous..." And he said " well protocol states that 4 is ok and that 6 would just be adding toxicity into your body" and again reiterated that we could talk about it next time. So let's remember, he's not saying I am ONLY getting 4 treatments but that it will be discussed next time.
While I totally would love to only have 4 treatments, I have had 6 in my head to give me the " happily ever after" What IF after 4 there is even ONE tiny cancer cell? I just can't take that risk. I HAVE to do everything! I have to go above and beyond what protocol states just to be assured I have done everything possible. That is why I chose the double mastectomy. That is why I am going to choose to do 6!
Please pray for me. For clarity that I am seeing the not only the big picture but the correct one.

October!?

October... How did THAT happen?!
Let's catch up...
The wedding was such fun! Brittany was probably one of the most beautiful brides I have ever seen. The kids all did a wonderful job- handing out programs and walking down the isle as a flower girl and ring bearer. (The last one did cost us one Nerf gun...) The reception was just beautiful and it was so nice to see many people that I haven't seen and that have been praying for us. I love how friends of Johns siblings that watched him grow up are now our friends too. We again were reminded how very blessed we are.
"Dolly..." That's what I have named my wig. Not 100% sure why but needed a name for 'her' (I need to post the story of buying 'her.') Now, in my opinion, it's a wig. Plain and simple. It may look nice, but it it still a wig- on my head. I am still laughing at how many people told me that they could not tell it was a wig and not my real head of hairs. BAH I say... Granted, most of them were men saying this and the beers were flowing. :) but alas, "she" stayed on and behaved.

The reception was fun and memorable... For many reasons besides the usual good time. One is that unbeknownst to their parents, Ellie and Margo were stuck in the elevator for over 1/2 and hour and were saved by many firemen with crowbars after Ellie called 911 from the emergency phone. Well, she HAD called her mothers cell phone but come on! All of my children were with me so I had put my purse at the table not thinking I would need it for an emergency! In my defense, Sarah and I had been looking for them... 

Also, as the evening progressed, I became aware of my children's love for dancing. Clearly, they get this from their father and his side of the family who were right out there with them. To say we all had a fantastic time is an understatement. I need to get some pictures of Henry who at one point had his tie tied around his head and was ending songs by sliding on his knees in perfect timing towards the band. I didn't even attempt to get pictures I was in such shock.

The next day, I felt like I was 110 years old. But it was worth every moment! 

Sunday, was a big soccer game for Sarah and John (her coach) they were undefeated and played another very good undefeated team. Short story is they lost by 2 goals that got by Sarah in the 4th quarter. She deflected one that was just incredible but after the 2 got by her, she was still playing goalie and could not stop crying. She is an amazing soccer player and I love how sports is her "outlet" and she truly gives her all. 

This week, I am feeling more "normal" but can't believe how tired I am. Just worn out tired. When I was changing our big family calendar, I could NOT believe it is almost time for another round of chemo. (10/10) it has really taken me much longer to recover from this round- just in time to start it again. I am not going to lie, it worries me how the rest of these rounds are going to go. I am not looking forward to them! Again, the timing of friends amazes me. Friends that make extra dinners and drop them off (saving me from cooking!) and sending cards and treats at just the right time when I am looking around at all of the stuff that needs to get done... 

A friend gave me a blessing bracelet. It is beautiful and has brought such incredible comfort and help to me this past week. Yes, there is worry-  my health, my children, John, money, bills, friends,the recent, unexpected death of a wonderful beloved teacher at SGS that has hit home with all of the kids, normal household junk, homework etc.  but seriously, this ONE simple thought. This beautiful bracelet made and worn to be a reminder of the MANY numerous blessings that are constantly here and there, popping up just when I needed reminding has brought me through this last week. I feel horrible because I haven't even called to thank her or tell her what it has meant to me because I think all she will hear is my crying and squeaky voice telling her thank you. So, again, thank you Mary Ann. I promise I will thank you in person soon! :) 

Fog Advisory Lifted...

Good morning...
I am happy to say that I think I have made the turn to feeling better. Wow, what a long, hard week in many ways. When I still felt horrible all day Wednesday, I started to panic a bit. This weekend is B.I.G. Big! Our nephew Sean is getting married (to the sweetest girlie!) and all of the kids are in the wedding! I am SO grateful to John for really taking over for this weekend and making sure kids are where they need to be and doing what they need to do! Because truthfully, I can't. It is always guaranteed fun when Wordemans et. all get together for a celebration. And selfishly, I am happy to have something like witnessing two great people vow their love for each other to celebrate!

This has been a rough week for Henry. I think the kids just take turns. Last week I was worried about Sarah. This week, Henry. He just hasn't been himself. Angry, rude specifically to me, discouraged at school... It all came to a head Wednesday. Bedtime the night before was... Let's just say painful. After an hour of sobbing and crying and screaming (like wemightneedtoclosethewindowsbeforethepo-poiscalled) bad. He woke up ok but as he was getting dressed, he just simply blurted out. "Momma, are you going to die?"  It just about broke my heart into a million pieces. Short story of it all is that I was truthful and said that I am trying my best and taking medicine to kill every cancer cell in my body and had surgery and am praying but that I would NEVER not be truthful about what was happening in this process and that he will always be taken care of and that honestly, we just don't know when we are going to die and that is why Daddy and I are trying to teach him and his sisters to be kind and respectful and loving and to do their best. All of this through a face full of tears and a very tight throat. All of the anger and frustration from him all week just put into perspective with one sentence. THAT is why I HATE this cancer. I am crying right now. I hate that I can't protect my kids from it OR the feelings it brings.

It also makes me so SO grateful for everyone in our lives right now. Each person makes a difference whether they know it or not. Prayers, emails, cards, texts, phone calls, voicemails, hugs, smiles and waves, chicken noodle soup and ice cream, handmade scarves, blessing bracelets... All of it gets our whole family through this adventure we are on. John and I are forever grateful and blessed. We talked about it so much. (Well, as much as JW and I talk- this is "the" joke for us right now, talking without interruptions OR when I am awake) :)  We are amazed at the bountiful blessings we receive daily.

Henry whipped this up this morning before school and had it on my pillow as a surprise. More tears and a grateful heart. Love that kid even though I am counting every grey hair that grows back on my head because of him. Well, not ALL of them...

Checking in on poor pitiful Pearl?

This is going to be quick. I am helping Sarah with her homework and John is helping Henry. Yes, we both need a drink. Except that I have been feeling soooooo puny, a drink might just push me over the edge. I really don't have a specific ailment, just many all combined. For documentation (and whining) purposes, I will list them :)

Slight headache that just won't go away
Sore throat
Ugh... Nausea... Same thing just always there and won't go away
Horrible taste for everything- even/especially water. Everything smells and tastes like dirty sweat sock...
I.... am...tired... So,so tired. Like I could lay down and be asleep in seconds tired. Like I have bags of concrete strapped to me and am just slogging along everywhere tired. Tired...zzzzzzzzzz

Waaaaaahhhhhh! Insert poor, pitiful me face.

But, things are looking up! I ate food today! I saw the plastic surgeon and got a "fill." (cringe) I attempted to drink coffee this morning. I got to chat with Henry's teacher today and she didn't burst into tears and I think still likes him :) slight exaggeration... Really, she is SO nice and is such a great teacher! Yet another huge blessing in not only Henry's life but ours as well.

I finally found a 4 section file holder so all of the children will be organized! Hahahaha Ok, I found a 4 section file holder for our kitchen wall that I will cram each of the children's important papers into in HOPES of some sort of organization and order in this house.

Smooches,
The gal keeping her head above water

Rumplestilskin...

Rough. That would be how I would describe this round of chemo. Thursday after chemo, I came home and slept on and off. I felt only tired- I'll take that! Friday, still felt extremely tired, started the dreaded headache... It thankfully has not been as extreme as in round one. I again slept most of the day when I could and went to get my Neulasta injection. None of this could have been possible without great friends taking the kids after school, and Margo all day. Saturday is a blur. I slept, tried to keep up on meds. Again, I have no words for our friends and for John. Just amazing. I am seriously in awe at the amount of sleep I had. Sleep has always been my answer for well, pretty much anything. :) I just haven't been able to implement operation sleep since having children!
Sunday was such a pretty, fall day! We had many soccer and basketball games- all of which were again taken care of by friends, family, or John. While John was at the Bengals game, I went to Sarah's soccer game and sat in the sun. It was nice to quickly chat with friends (my laundry fairy that makes me smile every time I see her) and the girls played well and won 12-0.
This morning, I just feel completely worn down. My FIL took the kids to school. Which by the way, all three immediately getting up, dressed and ready for grandpa on time was the biggest blessing I could have been given! Highly unusual and I am SO grateful! Margo and I are planning on hanging low today (aka watching tv all day) and hopefully, I will start to turn around for the better. Another blessing I wanted to mention was from a friend yesterday. While she has children, a busy work/ travel schedule and her own busy life, she doubled her dinners and brought over 1/2 to us. Along with a special treat for me that I will cherish. Thank you Mary Ann- your friendship and smiles are huge blessings to all of us! I needed it more than you could imagine.
Margo and I are "coldie!" and are going to try some toast with butter.

Thank you everyone- for all of your prayers. Please, please don't stop they are still very needed!