Expert Opinions, or My New Treatment Plan.

Slacker-town, USA: population, me. Sorry for the long wait between postings. Things have been... just, crazy. First with the Mayo number, then trying to figure out the best way to deal with it.... its just been wild lately. So, I know I can't make up for making you wait so long, but maybe giving you all the dirty deets will help.

After we found out the Mayo number was 10, a lot of things happened. I went for chemo last Thursday, and I was even more neutropenic than I had been the past round, when I posted about it. In case you don't remember, or aren't into re-reading every blog I've ever written, (I mean, I know, I'm brilliant, but that might be kinda boring...) that ANC (remember, that stands for allover neutrophil count, or the amount of white blood cells I have to fight off disease,) was 560. This time, it was 240. Pretty scary stuff. My hemoglobin was low too, around 9. They couldn't give me chemo again, and delayed it until this past Monday. They scheduled another 3 days of neupogen and told me when and if I get more chemo, I will get neupogen every time, since my body has just not been able to recover. The best part? I'm going back to work for at least two weeks, so I get to self administer the neupogen. I'm not actually going to do that, though. My mother in law and Jim are going to give the shots. They also scheduled me for a blood transfusion the following day, because of the low hemoglobin.

It.
Was.
Crazy!!!
I've never had a transfusion before, and I'm not sure if many of my readers have, but it is quite the experience. First thing they do is give you this bracelet for "type and cross." Like three nurses have to sign off on it, and its all very serious. When they gave me the blood, both Jim and Jack were there. At the infusion center, most patients sit in recliners in groups of four in an open air suite, but they have two private rooms with beds, so they put me in the princess suite. Kim was my nurse, and she is really comforting and amazing and knows me pretty well. Since the whole thing grossed me out so bad, she covered the blood with paper so I couldn't even see the bag. They gave me a shit ton of Benadryl in my IV, which, along with the Ativan I took, made me like "wheeeeeeeee," then, "zzzzzzzz." I actually went home and slept like 6 more hours, too. It was the first time since before I had my son that I just went to bed. I just came home and was like, byeeeee Jim, see ya, I'm out. It was lovely. I didn't feel better right away, but I have noticed in the days following that I am less short of breath and have a bit more energy. I'm experiencing some pretty intense physical exhaustion, though. Every round kicks my ass a little bit more.

Speaking of rounds.....

We met with Dr. Sehbai yesterday to discuss the therapy I will need in light of this Mayo number. When we spoke on Thursday, Dr. Sehbai suggested he reach out via email to some of the world's experts in treating GTD (gestational trophoblastic disease, or the class of disease that my cancer belongs to.) So, we got the information from them and the consensus is 3 more rounds.

Arrrrrrrgggggghhhhh.

I thought I was done, so it is frustrating. On top of that, it seems that this setback has caused me to finally start to feel some of the things I was eventually going to have to- sadness, anger, and the "why me," type thinking. Its healthy, and normal, but hard. I have been feeling totally discouraged. It doesn't hurt that when I "was cured," that a lot of my readers/supporters kind of disappeared. My readership has slowed down, and even my Facebook support seems to have taken a nosedive. I feel like I was getting a lot of support from blogging, and feedback from it, and now that this is gone, I am feeling a bit lost. I gotta say, it wasn't my idea to blog about this. I've been feeling discouraged because of it, and when I mentioned it to Clare, the therapist I am seeing, she said that it may be beneficial for me to write about it and let people know. I know my readers are the best people ever, and they wouldn't make me feel bad if they knew. And honesty is the best policy. And stuff. Still, I feel a bit vulnerable, and hesitant to post like this and ask for help. You see, I'm not the best at that. So be gentle on me. I promise not to wait between posting next time.

How is This Even Possible....

Hey, kittens! How's tricks? We have had a busy week here. Christa, my sister in law, was here, plus we  (and when I say we I mean my family and friends,) participated in the run or dye event in Dover this Saturday.

I also got some more discouraging news on Friday. It turns out, once my hCg got to <5 according to my home lab, it needed to be sent out to the Mayo Clinic, the closest place that is able to measure the quantitative, or quant for short, value. When we asked to have the quant run, we were assuming the value would come back 4, 3, 2, etc. Since I was supposed to finish my last round for hitting undetectable this coming Thursday, I guess we just assumed everything was fine. But when we asked for the bloodwork, they said the doctor needed to review it first. Dr. Sehbai was out of town at a conference. So, they sent an email asking him to release the results. The following day, another oncologist released them.

It.
Was.
Ten.

We were absolutely floored. The first reaction, of course, is, what the hell does this mean? Is it a lab error? Typo? Am I dreaming? Because this feels a bit like a nightmare! So, we called Dr. Sehbai, the kindest, most dedicated doctor there is, and he tells me not to freak out (not in so many words, but you get the idea.) So, the next step is to determine if there was a rise in hCg. I also contacted Dr. Cadungog, who explained that if there was a rise, this would mean I am chemo resistant, and need a different protocol, EMA/EP.

The following day, they tested my hCg and sent to the lab I have been using all along. It determined that my hCg is still <5. So, no rise. But, ten is ten is ten. If the Mayo Clinic, which has apparently more sensitive equipment, says ten, I'm not cured.

I'm not cured?

What?

Again, when I posted my last blog, I was filled with anger and frustration. I thought that this was the worst it could get, a delay in my last round. As it turns out, I now am more than likely going to be needing more chemo. And the kicker? I have run out of short term disability days at work. So, for my next round, I will have to be actively working while getting chemo. Fortunately, after working 14 consecutive days, I can open up another short term claim and go out of work for another 6 months. I have no idea how I am going to get through those two weeks, though. I am exhausted as is.

It was really important to update my readers, but I am just not sure at this point what is happening or where we are going with this. I am going to try to get a blood draw ordered and sent back to Mayo sometime before the day I am due to see Dr. S and have chemo again (this coming Thursday.) I wish I didn't have to do any of this, because my charming cousin Tammy invited me to visit her and her son, James, this week. I am so ready to get in the car and just disappear for awhile..... Run away....

I will update as soon as we know more.

xo

Setbacks

Woke up (at 315) totally confused on couch. I don't want to wake baby so I'm face booking and chilling down here until 445 am when my home chemo infusion bag is empty and Jim unhooks me for now. If you don't recall, I keep the needle in and return for day 2 of the EMA portion tomorrow, well, today. I will also have a home nurse at 8 am to flush my port.  

Hopefully this is the last time we ever need to do this, but my numbers were screwy today. Feeling so anxious because we don't know what it means and need to redraw and wait to know things. I just want this to be done! 

Basically, what happened is they sent my labs to the Mayo clinic, since our local lab is only able to determine that it is <5, not 4,3,2, etc. Well, it came back 10. Ten isn't remission and would require more chemo. Or, if I'm trending up, I'm chemo resistant and need a new regimen. 

Unfortunately for me, Dr. Sehbai is on vacation. I did speak with him and Dr. Cowabunga on the phone. Both agree that variations in labs are normal and that I should stay calm until we know what the truth/real value is. But I already know ten is ten is ten. So, what's the point in being optimistic that another lab thinks its less. Unless that ten is truly an error. I guess, I am just feeling discouraged from the whole process for the first time. I'm so frustrated and angry. I even took a sedative, enough to sleep on the couch and away from my boys. That's huge for me. I just want to sleep until this is over. I even slept though my infusion yesterday. 

Sorry for the lame-o blog, just wanted to update. 

Setback

I am literally stunned, speechless. My jaw is slack, and the nurse is peering expectantly, almost impatiently at me. Five hundred and sixty.

Five hundred and freaken' sixty.

That is my ANC this week, or all over neutrophil count. Those are white blood cells. You probably have an ANC of at least 2,000. I had 7,000 when I started chemo. So, there's that.

Kathy, the nurse, is patiently, calmly, clinically explaining to me that chemo "just caught up to you." That I have been lucky up until this point. And then, the blow. You can't have chemo today.

It was supposed to be my last day. Or the start of my last day. Now, Kathy is explaining that I will need not only two, but three days of neupogen. The neupogen that had me near crawling up the stairs, clinging to the bannister for dear life. The neupogen that had me with tears in my eyes from pain at my friend's wedding from standing. The neupogen which caused pain that was immune to DILAUDID. I try to take it in stride, but my eyes fill with tears when Kathy walks away. I look to my husband and see the pain reflected there. I feel my sister in law rubbing my arm, and her pain is palpable too.

It feels like I'm dying. Seriously. And I know I just need some perspective here, because I walked into this cancer center today cocky as hell. I was so happy. It was bound to end at some point. That same morning, actually, we noticed there was a banking error and everything was screwed up. My husband was, naturally, wigging out. I told him, Jim, there are big things in this world, and little things, and this banking issue (which is actually a huge, complicated issue involving about a million overdrafts due to a hotel's billing error,) is a small thing. When I was saying it, I was really thinking, holy crap, how are we ever going to fix this and pay our bills? But, it turns out I was right. That was not the worst thing to happen to us that day.

Dr. Sehbai comes to see me and there is pain in his eyes, too. I tell the nurse I am crushed and she confesses that the doctor is too. Just writing this, my eyes are filling with tears, thinking about all the support and love that surrounds me. I am so truly blessed. Dr. S explains that with a count this low, I should not be going out to restaurants and stuff. Bummerrrrrrrrrr. We totally had dinner plans! He says if they give me chemo, I could drop down to having no white cells at all, and end up in the hospital with an infection. I really don't want to risk my life, so I think I'll listen to the good doctor. Besides, what else am I going to do? Hold a nurse hostage and force her to infuse my chemo? Yeah, don't think so. But you have to admit, its a funny mental image. THIS IS A STICK UP! GIMME MY CHEMOS!!!! Hah! I'm here all night, folks.

So, what are ya gunna do? No chemo, no problem!

They wind up giving me the neupogen and scheduling my chemo for Thursday. It is less of an issue to delay chemotherapy, since I am in remission and undetectable (YES!) But, it is still a hassle. I have to go back to work on the same day, regardless, so it increases my chances of being neutropenic when I return, which is kind of hard. I would wear a mask and wash hands like crazy, but, like, its not bad enough I have to wear hats to hide my bald head? Let's add one more thing that makes it look like I had cancer. Ugh. Oh well, I should really stop being such an ego maniac! No one cares if I am wearing a mask. Although it does get warm under there. They will check my ANC again Thursday and possibly give me chemo then. It is planned for me to have chemo that day, but I say possibly because, well, look at what happened Monday.

I was flying so high! The worst part is, we had friends who were going to visit this weekend, dear Lisa and Irving. One of our favorite couples. Here they are at our wedding:

In the interest of not, you know, killing me with some life threatening tiny infection that they do not even know they are carrying, they cancelled their trip. They are so cool though, they were going to ride their motorcycle here! They are going to Vermont now, instead, I think. We love them and will miss them so much, and hope to see them after I finish chemo!

So for now I am hiding in my house. My in laws are coming over today. Christa is in town and is really enjoying spending time with her nephew. I'm going to finish this blog on a happy note, by posting a few pics of her visit and Jack. Because sometimes, you have to laugh to keep from crying. And that is okay.

Here is Jack, watching some preseason Bills football. He's got his beer, remote, and snacks. He actually screamed through the first quarter, slept the second, and played with his Aunty the second half. So, a great time was had by all!

Nice hair, Jim.

Ramadan... and a Lesson

Gratitude. Respect. Honesty.

What do those words mean to you? I feel like they are floating around in my world an awful lot lately. Today, I'm going to focus on respect. Something that happened to me, and actually, my husband more than me the other day inspired this. I asked him what word came to mind when it occurred and respect is what he came up with. So, I googled "respect quotes," and found this, from a book that I loved:

“Respect was invented to cover the empty place where love should be.” 
― Leo Tolstoy, Anna Karenina

So, heres the story, morning glories:

A few weeks ago, Jim happened to mention to Dr. Sehbai that he had once observed Ramadan. This was during the time or before the time that Ramadan occurred this year, which Dr. Sehbai observes due to his religion. After we left the appointment, Jim was very curious as to how the good doctor had responded. He was concerned that Dr. Sehbai may have been insulted! Now, for those of you who do not know my husband, he is very sensitive. And that's a good thing!

Look at that cutie!

He was torn up worrying about it. The last thing Jim would ever want to do is reject or insult another man's cultural or religious beliefs. So, we talked about it, and, not knowing Dr. Sehbai as well as we do now, came to the conclusion on my behalf that Dr. S was interested, not insulted. Jim was probably on the fence, still!

After my appointment this past Monday, during which a LOT was discussed; more on that later, Dr. Sehbai mentioned he wanted us to wait before going back to the chemo suite for me to get my infusion. I had to use the bathroom and when I came out, Jim was holding this:

And beaming from ear to ear! Jim was so pleased that Dr. Sehbai gave him this, I thought he was going to float away.

So, its easy to find respect, once you have earned it. I believe it was the following day that Ramadan, for this year, ended. So, as the doctor explains to me, you are not expected to binge, but continue observing discipline throughout the year. You are, however, allowed to eat and have water again during the day. I was so worried about my top guy, who works so hard, being hungry all day! To observe a holiday such as this, with discipline and dedication, to me, deserves the ultimate respect! And yet, he gives it to my husband and I.

We are truly lucky.

Truly Undetectable

I'm really excited for you, and ima let you finish, but....

I WENT UNDETECTABLE TODAY!!!! 

The screen shot says it all. How cute my son is, how great my Doctor is, and how truly bad ass I am because I kicked cancers ASS! Today was just.... The best  . Even though both Jack and I got shots. Daddy's diploma came in the mail today too, his Bachelors of Science. And Jack ate peas! 

Is my Kanye joke too late to the party? Are you psyched I finally made it?! I know I am. 

I promise to blog later when I've gotten some rest. I finished a round of EMA/CO today, and have one to go. That's Two. More. Weeks. I'm tired and my tummy is upset today so its bath and bedtime for mommy and Jack. 

For Real Real

I feel like shit for real, man. I just need to say it. It's not like me, I know. But the past few days, side effects wise, have been difficult. I knew it might happen, but its kind of unfair that it happens now. Right? 

This is what I'm doing as I'm blogging tonight, 1:00 am to start. I have no clue when I will finish this actual entry. It's Sunday evening or, more accurately, Monday (chemo Monday, ugh) morning. WTF, man. All I can really think in my negative state of mind is, "home stretch, my ass." 

I'm having this pain in my legs, something fierce. That's me with ice packs to the knees, chillin on the couch. Notice the two freezey pops. It is a two freezey pop minimum kind of night. If I could stand without my knees buckling beneath me and feeling like someone has taken an ice pick (literally) to them, I would be abusing this even more. But I can't. I can barely stand and it hurts to walk and every single time I move it starts throbbing. It also hurts in my tummy and low back. Oh and the best part? I've taken dilaudid (earlier today and yesterday,) and it doesn't even touch it. That's a very strong, very narcotic painkiller. I was loathe to take it at all, given my fear of all things sleep and drowsiness and/or addictive related. But I had to. 

I took the first dose of giving up, ahem, I mean pain management last night while we were still at our bed and breakfast, after the wedding we attended. It was the nicest place, with the steepest stairs, like woah. The pain began sometime on Saturday, I think. I was so scared and hurt as it intensified I started crying. I remember saying to Jim, "if you can't walk you can't dance, and I'm not sure if I can walk." He told me not to worry because it is going to get better. 

Only it did not. 

I tried Tylenol at first, but what shocked me was taking that dilaudid and having it not work. I finally resorted to that yesterday evening, the Saturday or night of the wedding I was attending. It. Did. Nothing. 

Nothing. 

I felt calmer, maybe. Possibly a bit less stiff. Maybe, drowsy enough to care less about the pain. But, still pain. Still whimpering from it. After the first doss of meds, I was just lying there with tears streaming down my face and Jim just held me. During the day, Jim kept saying "what is it," naturally being concerned, when I would yelp or grimace, and I would just snap at him that it was pain, what else could it be? <<Insert plug for Jim for being such a good man and putting up with me. I love you baby.>>

We started our weekend adventure on Thursday afternoon-ish. I had my neupogen, which is the first runner up to blame for this pain, btw, at 9:45. Chemo could be the culprit, or all the driving, or I'm crazy, or a neat little combo! We got on the road and drove well over halfway to our destination. It was pretty easy and Jack: 

was so well behaved in the car! We made it to Oneanta and stayed at a motel there. Adventure! I was still feeling fine at this point. On Friday, I bought a pair of new sneaks cause I forgot mine. We hit up the Neptune Diner, then we got on the road and checked into our b&b, about a 2 hour leisurely drive. The B&B was a really cute place. The food wound up being incredible. Think chocolate cream pie as a snack, and a gorgeous, home grown veggie filled quiche for breakfast. 

We enjoyed a rehearsal dinner Friday night where they had do it yourself outdoor brick oven pizza making! So cool. So Graham and Nitya. That's the couple who were getting married. I felt ok at the rehearsal and it was really great to get to know some people. We even met another baby named Ivo. There were lots of babies! Here's Jack with one of them, during the ceremony:

On Saturday before the wedding, we joined Jack's godparents, Keven and Jess, to go diamond mining in Herkimer, just for fun. 

Here's Keven and Jess with Jack! 

Yep, you read that right. Diamond mining! That was the day my legs started feeling really stiff and painful, so I mostly sat back with Jack and watched. But it was so much fun and Jessica found a really pretty, if tiny, clear diamond. My tenacious, task oriented husband mined plenty as well. He is truly task oriented. Give that man a mission and he will finish it. Here's Jack, aka Thor, mining diamonds:

Much later, during the ceremony, in true baby fashion, Jack over-wet his diaper, but the daddy in the photo was kind enough to help me out. I tried to stand for the ceremony, but at that point the pain had really started throbbing in earnest and I was feeling kind of weak. So, we sat in the grass and just listened. One of my favorite parts of the ceremony was when this was said: "all that I need is already there." 

I thought to myself, that is so powerful. At the end of the ceremony, the wind started to pick up. It was so beautiful (soo beautiful!) and powerful and spiritual. It made me feel so happy and at peace. My husband stood in the ceremony, so he made a speech at the reception. It was amazing. 

Another thing that was really cool is I got to meet some cancer survivors. The first I met was Susan, Graham's aunt. She owns the farm the wedding was on. Cancer was the topic of discussion a lot this weekend, because Jodi, the bride's mom, is newly diagnosed. She wasn't able to be there, so they used FaceTime. (I bawled.) 

Words cannot describe the incredible spirit I saw when I met these two families. They were truly so inspiring and amazing; to myself and my own family, and, I'm sure to the other guests as well. And it wasn't just family that brought this feeling around. All of the guests were a part of it. It was a spirit, an undercurrent, and a theme that was floating through the air like the lightest, sun kissed, first breeze of spring. It was like something I read once in A Tree Grows In Brooklyn (irony not intended, folks, as they live in Brooklyn) where Betty Smith writes:

“Those were the Rommely women: Mary, the mother, Evy, Sissy, and Katie, her daughters, and Francie, who would grow up to be a Rommely woman even though her name was Nolan. They were all slender, frail creatures with wondering eyes and soft fluttery voices. But they were made out of thin invisible steel.”

That's the best way I could describe the women I had the pleasure of meeting this weekend. All of them, related, family, non family, and otherwise. And that is how I choose to describe Jodi, and especially her daughter, Nitya. I have absolutely no right to complain about some stupid sore knees when there is strength like that to be found in this world. I'm just lucky that this weekend I was able to witness it. 

My only regret is that I was unable to dance the night away. We left much earlier than pre-baby, pre-cancer fun Kat and Jim would have stayed and I feel just terrible. But I know that a great time was had by all and our friends danced the night away, and for me that is enough. We did get to see them off in the morning before getting on the road for what wound up being about an 8 hour trip, with good stoppage on the way home. 

I finished up my trip at home with a bowl of mac and cheese and getting in bed early. The pain woke me, but its 3 am now and I've just taken another dose to try and take the edge off of the pain. In between writing this blog I managed to ice the knees more, which isn't helping much but some. I also took a break to feed Jack magic. He has his 4 month shots at 8:30, so I need some shut eye!

I'm trying to stay positive about chemo tomorrow and know that Dr. Sehbai will at least have some insight into the cause if not treatment of this pain. Cause walking is important. 

What a weekend.  

Thanks for listening, guys.