Sunday, June 30, 2013

Half Of The Year Is Over: Sailing On

This may be a long one. Ramblin' on.

First off, thanks to everyone who was concerned about my health nonsense last week. It took a day or two but I returned to normal, or as normal as I've ever been. If anything like that happens again, I'll head straight to my doctor because it was slightly unnerving. I'm thinking it was a migraine and probably stress related but I'm no doctor, even if my alter ego is one. Dr. Armshoulder Shoesnshorts. 

We had out first impromptu pool party of the summer last weekend. I'm feeling pretty good about my bikini body but I still have some poundage to drop. Not the point. It was fun to see some friends, old and new, and it was especially rad to have the 3 babies born back to back to back, Colton, Sully, and Noah, together. It's funny that we all had babies at the same time. Sarah and I even had the same due date. Guess we were all bored on the same night. ZING!

Monday we went to the aquarium and while it was a blast (Spencer lovvvvves sealife), I can officially say I don't need to go back. Even at the reduced price. We went to Shooters, a.k.a. 1984 Miami night club, for lunch and all our good times went sour. It was clear that Spencer's PICC had come out a little. Black dots on the line let us know if it's still in place. Where we were supposed to see 1 or 2, we now saw 3. I was heartbroken. If the line moved, that meant another surgery for Spencer. I was so hoping the PICC would make it through his last 2 rounds, though I knew it was a long shot.

The doc on call said there was no need for an emergency visit so I headed downtown with Spencer on Wednesday per usual. The line had moved, but we knew that. They were able to draw his blood and flush his lines so it seemed to be functioning. The draw showed that his white count was low which was to be expected but his hemoglobin and platelets were normal on their own so no need for transfusions. We went for a chest x-ray and he got his bandage changed (the WORST), and then we discussed a bunch of stuff.

Spencer, schedule-wise, would be set to start chemo on July 3rd, but that doesn't mean his ANC would be ready. Since there's the holiday and all (a holiday I actually love for some reason), we're going to wait a hot second. In fact, since his transfusable items looked so good, we don't even have to go downtown this Wednesday!! We'll go around the corner to have labs drawn and if everything is A-OK, he'll start Round 5 on Friday. If the numbers are not favorable, it'll depend how low they are as to when we'll check again. He was a week off last time. With every round of chemo, you bounce back more slowly. I want the home time (and it would be nice for Todd to go to Tessa's wedding but my wife will be a lovely date), but I want this shit DONE!! 2 rounds left.

An exciting exchange had to do with recovery. His doctor said he'd be more inclined to keep him in the hospital after his 7 continuous days of Chemo because he's getting one he's never had before. Not to say it's more intense or anything, it's just new so there's no way to say how Spence will react. However, since he's done so well at home and has really kicked ass with every round so far, recovering at home is once again open for discussion!!! Being at the hospital is not the best place for him once the chemo is unhooked (I do like that they've got their eyes all over him while that's going on) and it's not good for me, either. So I've got all appendages crossed for home recovery. 

As far as the line goes, the x-ray showed that it has moved to the top of the superior vena cava but is still centrally located and functioning. His doc is comfortable with continuing to use the line but he's looking into hospital policy. If they insist it be threaded further down, he'll have to go under anesthesia to have the old line removed and the new one place. I would prefer that NOT happen so  anything that can be crossed to crossed regarding that mess, too.

In the meantime, Spencer has kept up with all his therapies and is kicking ass left and right. He's getting stronger and standing more and becoming more and more verbal. He's in the 50th percentile for height and below the 5th for weight but he eats so they're still predicting long and lean. At the end of this month we'll start preparing for him to enter the classroom for a 2-days-a-week Early Intervention Pre-School. He'll get all his therapies plus snack time, gym time, and a lot of socialization with kids his age. They said his expressive speech with explode once he's in the classroom. When she told me he'll need a little backpack I almost cried. He's going to love school! But I'm not ready for such a big milestone. Sniff!

My Porkchop just turned 9 months!!! He is amazing!! They keep saying he's ahead, especially with gross motor. He's trying to take steps every day! And he recently added "kitty" to his vocabulary. He's in the 75th percentile for height and the 10th for weight but his doc said a lot of 9 month olds just sit and play and Sullivan is constantly active. He's doing amazingly and I love him to PIECES. Ask anyone, he's the happiest baby ever. Best little brother. He'll be 1 before I know it. I'll need a tranquilizer on that day.

So outside of mom stuff and family life, I've been pretty busy with school and even with friends, outside of the pool party. Sully and I visited Potsie and Nick at their awesome new digs. On Thursday I went on a roadtrip to visit one of my best friends who had a horrible surgery with horrific complications. I felt terrible for her and worse that there was little to nothing I could do to help. I hate that she doesn't live closer so I could clean up, run errands, etc. Again, it reminds me that we are not special. Garbage is happening to everyone. She's done so much for me and I can't repay her. After that, also on the road,  I visited the bride-to-be, Tessa, and her new digs. I miss her painfully. Friday she was in my neck of the woods so we all got together in a fun group for the ItalianAmerican Summer Fest. Awesome time. And last night we stuffed ourselves silly at Chocolate Bar for her last big night out before the wedding. Get the pecan-crusted chicken and a hot chocolate to go! The martinis are also epic. 2 weeks until the wedding!

So that's my story. It's a lot, I know. And my To-Do list is ever-growing. Homework, PT for Spence tomorrow, a family function and blood work Wednesday, holiday fun, and the possibly back to the hospital (which means I need to wedge packing in there somewhere).        So maybe I should get out of bed. But the babies are still sleeping so...

Saturday, June 22, 2013

No Clever Title: A Little Bit Of Blathering Weirdness

I'm laying in bed. The boys are asleep. Todd is at work. I have a terrible headache that has carried over from yesterday. Yesterday was beyond strange and I even told Todd I feared I was having a stroke. I wasn't really joking. My behavior was out of the norm and a little bit concerning.

I was jumping in a quick shower when I noticed a blinking prism in my vision. If I shut one eye or both eyes, it was still going so I ruled out a vision issue. I had been blinking and squinting a lot but figured it was just my eyeglass prescription needing adjusting. As the day went on, I worried it was my brain.

Eventually the prism took a hike but I still felt off. While driving to a late lunch and attempting to talk to Todd, I could NOT focus. Not even focus. I couldn't get words out. I knew what I wanted to say but couldn't. I couldn't say certain words. Couldn't remember them. When we got to Fathead's, I got a table for 3 adults and... because I couldn't come up with the words for highchair or sling. If I wanted to really say anything, I had to speak verrrrrrry slowly and concentrate and the words would come out. Phoebe and Todd were finishing my sentences. It made me feel so lame. Like I was high. This went on for about an hour or two. I would start talking and drift off or just give up out of frustration. I LOVE to talk. TORTURE.

I ordered a soda which I hadn't had in 3 months and eventually regained my speech which leads me to believe it was a blood sugar thing. Friends suggested blood pressure, some retina thing, sun exposure, stress, stroke...and one has even been going through it herself! I've been dieting and exercising (down 11.5) so I could just be all out of whack. It could be a combo if things. I just know I had a soda and a sandwich and came around. Very concerning. The headache lingers.

Stress being an option was interesting. Yes, I've been under a lot of stress but so is anyone with 2 little ones. And honestly, I've been under a lot of stress since Spencer was born. And we've been doing this whole cancer/chemo thing since February. But for whatever reason, anxiety and stress are really suffocating right now. It's like I just found out my kid has cancer. I'm crying a little bit more, need more distractions, dislike being separated from my boys at all. I'm just going through something and can't quite get my head around it. And I feel lousy for feeling lousy because I'm just the mom, not the patient. It's selfish to be all "woe is me". 

Especially since life is actually so good right now! School is trucking along and by January, I'll officially be in Nursing School. Sully is kicking ass with his milestones...he'll be 9 months on Monday and walking any time. He's sweet and funny and just awesome. And Spencer life is AMAZING. He's been home for almost 2 weeks with 2 more to go. He's been continued with the great eating and drinking, still no throwing up or side effects, and despite getting platelets and blood this week, his numbers are now normal all on their own! Home has been the best medicine for him (which I plan to push regarding next round's recovery).

So why am I all stressed out and anxious and nuts NOW? I get feeling out of sorts while we're in hospital prison but we're home! I'm in my bed, my shower, my kitchen, my pool, my park, my grocery store, blather blather. Why am I feeling so intense?? I know we've been through a lot but so has everyone. A friend lost her mom. A friend is struggling with situations with a parent. A family member has struggled post-surgery. A friend had a tumor bigger than my KID removed from her body. So many people have stupid effing cancer!! And I'm sure I'm forgetting plenty of other horror stories. They just prove that our situation is not special. More and more, it's the norm to suffer and struggle. I just have to deal with it better or I'm going to blow this precious down time that we have.

I hate the word "precious". Ugh.

So I'm going to monitor my physical health situation and see how it goes. If anything iffy comes up again, I'll go see my doctor. I'm not leaving anything this weird to chance. My headache is starting to subside so maybe the fluke is over, I hope. Not sure what the day holds for me. Homework, I'm sure. Probably some pool time. Taking it easy. I would like to get some Cheesecake Factory in my life but I don't really see that happening. At this point, I can't believe it's 8:00 and I still have 2 sleeping babies! 

Maybe I'll shut my eyes again.  

Monday, June 17, 2013

The New Normal: A Pretty Rad New Routine Outside Of Hospital Prison

Happy Birthday to Spencer's Godmommy, Tessa!! Can't wait for your wedding! It's going to be boatloads of fun! Hope today was AMAZING!!!

Spencer got to come home a week ago Sunday just like we thought and hoped. i took Sully to the Strawberry Fest car show and by that evening, my boys were together again. And we slipped right back into our home life like Round 4 never happened. He's been amazing at home. Eating and drinking like a champ, no throwing up, full of energy. Pretty much no side effects at all.

He went to the clinic last Wednesday for a check-up and they repeatedly told me how great he looks. He's an inspiration, truly. Never let this whole mess get him down. Wish I could say the same. I've been feeling a lot of anxiety lately, like I just heard for the first time that my son has cancer. It's been tough to shake but I'm trying to stay positive. Only 2 rounds to go.

We've been able to have his extra blood work done close to home which saves us a trip downtown. But yesterday, Spence had a lot of bruising on his arms and legs which is an indicator that his platelets are low. So Todd bypassed the local blood draw and went right to Rainbow. His platelets were only 15 (150-500 is the norm) so they filled him up and he was good to go. He'll probably need blood tomorrow which takes about 3 hours. Trying to get a 22 month old to sit still for 3 hours on a short leash is a challenge and I get to go on this adventure. But whatever he needs, I'm there. 

We still have a few weeks at home which is exciting. I've gotten to spend time with friends and go to a bachelorette party, which was entertaining. I wish we had the options to recover at home for the final rounds but I don't think that's possible. I'm not going to bother getting my hopes up. I'll just thank my lucky stars that he's doing as well as he is. We ARE so lucky. It's still every patent's nightmare but we're surviving it and we'll just move on when it's done. He'll start pre-pre-school, we'll do swimming lessons, I'll start my nursing program and we'll just live.

And to end on a happy note, I think Sully is going to walk at 9 months. He's been crawling, standing, cruising...and getting a lot of bumps and bruises, including a nasty split lip. But that's what it's like to have baby boys, right? Hopefully Spencer will take a cue from Sully and get himself standing. I'm hopeful that progress is right around the corner!!

Life is (pretty) good. It would be better if I didn't have an Inorganic Chem exam today!!

Friday, June 7, 2013

Round 4: Get In, Get Out, Get Home.

I'm hoping that this is the only time I'll blog from the hospital during Round 4.

The plan, according to the very wise Carol High Hair, is to get in, get out, get home. GIGO! And oh...I guess by now you've figured out that Spencer's counts were solid enough to start chemo. I ran him around the corner for a blood draw Tuesday morning and his ANC was 1040 (just had to be over 1,000), so we were able to check in on Wednesday and get this train a'rollin'. We were ALMOST delayed AGAIN due to a hospital water line break but Spencer is a priority patient so they worked it out. We're in a room in a very quiet section of the floor that I didn't even know existed! Todd was able to come when we checked in and everything has been super low-key, just how I like it.

This is the last round of Induction Chemo, meaning it kills the cells they could see (even though they haven't seen anything since after round 1). The final rounds will be to catch any little bastards that are hiding in there. Round 4 started Wednesday evening and runs for 96 hours straight, wrapping up Sunday. He also receives oral chemo twice a day. This round is almost identical to the 1st and 3rd and he made those his bitch, pardon my sailor-speak. And also pardon me but I may have a little chemo-brain-by-association because I've been repeating myself A LOT when blogging about this experience. During the last round, it was open for discussion regarding him recovering at home or in the hospital. It didn't go our way and we were here for 15 days. This time, his doc said he's pushing for him to recover at home...he wants us to go. I want to see someone try and challenge him!!! Pfffffft.

They've gone so far as to ask me if Todd (who will be here when chemo is kaput) would prefer to take him home Sunday night when he's unhooked or Monday morning. That's super reassuring. They're setting up his clinic check-up for Wednesday and securing his last dose of oral chemo for us to take home. As long as everything stays nice and boring between now and hour 96, we should be home and happy in no time (and I can celebrate by watching the season finale of Game Of Thrones!!). And we'll get to be home and happy for...4 weeks, I think! I'll probably have to bring him to the clinic twice a week for check-ups but I'll do it. I'll do anything to not have to sleep at this hospital. I'd punch a SHARK in the FACE.

So like I said, things stay boring, we get to go home and enjoy Father's Day, maybe the 4th of July, and just live a little life in the sunshine. Though this is Cleveland so it could snow for all I know. As always, thank you for supporting my little dude in the many ways you all have. We're very lucky to have such a great team and hope that we can one day repay you somehow. And if you can keep him in your thoughts until we get the official word that we can blow this pop stand, that would be greatly appreciated.