Thank you.

I have so many things I want to say right now and I'm not sure I have the right words or enough energy. I apologize ahead of time if this turns into some incoherent jumble of words.

Today was the second round of the new chemo routine. It went fine. On the odd weeks I get a cocktail of meds, and on the even week I only get one of the chemo meds. Of course it is the one that seems to cause more side effects and has the potential for a nasty medication reaction, so I have to take a large dose of oral steroids for the first three treatments. Each time the dose decreases, so last week I had to take 5 Dexamethasone pills 12 hours and again 6 hours before treatment. Today it was 3 and 3, and next time it will be 2 and 2. I also have to take IV Benadryl with each treatment. Originally I was supposed to take 50 mg IV (for the majority of you that don't know what that means...that is a whopper of a dose!). I can easily sleep for 12 hours if I take 12.5 mg (or half a normal Benadryl pill). Geoff and I were both concerned that 50 mg would be WAY too much for me and jokingly told them that they would have to put in a breathing tube (intubate) me if they gave me that much, so now I get 25 mg IV each time.

Usually I'm asleep within minutes of them starting the bag that they put the Benadryl in, but today the social worker came to visit us. We talked to her once before a long time ago. She is very nice, but even though I am a nurse and I wouldn't hesitate at getting social work involved for one of my patients, I have a hard time initiating it for me. Geoff asked to see her the first time and this time we saw her because my super wonderful NP read my last blog post.

Shortly after I posted the Help post my NP called. She took care of talking with the social worker and giving her the link to the blog post and more information about me, so together they could find grants and resources that may be of help to us. In the long run I am very hopeful that this will help. We talked more about social security disability and she reaffirmed that we should do it and even if we do the paperwork now it will likely take 5+ months before any checks come in. In the meantime I will have to work even less hours which I have very mixed feelings (mostly guilt) about. Geoff thinks I should do it because working has been hard for me and another thing to keep up with. I feel guilty because it is ingrained in me that I should be working and helping my family instead of putting my energy into school, but in the long run I know school will pay off and it is where my heart is right now...after my family, of course.

As I said the meeting with the social worker was very good. She came just as I was starting chemo and she was there when I got my dose of Benadryl. I could feel myself getting sleepy, but just like a certain 2 year old I live with I convinced myself to push through it and stayed awake for the rest of the meeting. By the time we were done I had about an hour of chemo to go and I wasn't feel as tired (this is likely from the steroids which in theory have the opposite effect). We distracted ourselves by watching tv on our newly gifted NetFlix account (thank you Michelle and Shannon!!!). This is ultimately our favorite way to pass the time at chemo...watching tv or movies and having "chemo dates" which essentially means we get time to watch something without the risk of small children demanding our attention every 2 seconds.

After I finished chemo today we decided to make a quick stop at Target to pick up a few little things. Once again I reveled in the fact that I could walk through the store without little children and this novelty gave me a little burst of energy. I particularly enjoyed walking through the Halloween section (one my favorite holidays) and trying on silly hats without someone yelling "let me try!" or "are you going to buy that?" or "me! me! buy that for me!" Ahhh, the simple pleasures of life. Also, I didn't have anyone screaming that we needed to buy Halloween candy nearly a month early so they could try to figure out where I hid it and eat it. Nope. We will be waiting until the last minute for that!

Finally I realized that my energy level was crashing and I was getting really crabby. I was getting annoyed with poor Geoff for walking too close or trying to hold my hand or walking too far away and not helping me. He couldn't win and fortunately I still had the foresight to see how impossible I was being. I apologized as best as my mood would allow and recommended that it was time for us to head out. I used part of an electric gift card one of my friends gifted me the other day (thank you Olga! works really slick!!!) and I whined my way back to the car.

Geoff suggested and actually stated that he would prefer if I fell asleep on the way home because in his words I was getting "belligerent." We both giggled and eventually I did. We made a quick stop at the house to do a few things and then headed out again to pick up the kids at the last minute.  After that we had dinner together and when I could tell things were headed south again I excused myself to go lay down. This is when I decided I wanted to write a blog post before falling asleep.

It's been hard for me to write lately because once again I haven't had enough time or energy. I've been tired, sick, and stressed. I've explained most of the stress, but there is always more that I don't explain...school, kids, pets, schedules...I had an upper respiratory infection for the past few weeks that peaked last week and made me absolutely miserable. I slept every chance I got and lived off Robitussen. All of this made me feel even more guilty because I felt like I was dumping on Geoff who is by this point exhausted and then I had to start chemo again.

The port is doing well and usually doesn't both me much. It is supposed to essentially feel like a triangle shaped lego under my skin and possibly look like it too, but this time it isn't "as" noticable and so far only two of the bumps can be felt. This leads me to believe that it has already moved from being straight verticle to slightly tipped back at the bottom. Hopefully this shouldn't be a problem, but I'll be honest with my history, I'm a little skeptical. Today when it was accessed it flushed fine, but then it didn't have an immediate flash (this means blood return). I immediately turned my head to the left out of habit (this helps) and the flash came. The next time they tried to get a flash it was immediate, so hopefully it is fine.

The upper respiratory infection (URI) was cause for concern last week, but they decided I could still get chemo. The deal was if it lingered then I had to let them know and get a chest radiograph. I willingly agreed. The URI lingered over the weekend and by the beginning of the week started to clear up until today. Of course today it was back with a vengence. Geoff thinks this is because now he is sick and he thinks he gave it back to me. Personally, it doesn't matter to me, I'm annoyed. I didn't have a clinic appointment today, so I decided to wait until Monday and if it doesn't go away I'm going to call. Right now it's just an intermittent annoying cough, but I'm hoping it doesn't affect my weekend too much because one of my old roommates and best friends and her family are coming to visit. Oh, and I have a couple mamas that are due anytime that I'm on call for...and I already missed a birth the other night because I slept through the phone call (this is one of those times when I'm both mortified and eternally grateful that I'm just the student!).

So, the latest chemo...I was hoping it wasn't going to have much for side effects for me and I could keep functioning pretty well. I'm not sure how much of how I've been feeling is because of the chemo vs. the URI, but I have had a lot of bone pain. My hips and ankles hurt BAD! It makes me need to take pain meds around the clock and crave my heated blanket. Netflix will be a lifesaver as a distraction these next 6 months! The pain makes me nauseous, so it can be a vicious downhill spiral if I'm not careful. Last week I lost 7 lbs in a day and 5 more the next. I'm sure I'll gain it back, but it was a little scary and it gives you an idea of how crummy I was feeling.

The low point of my week was all the financial concerns I mentioned in my previous post. That post was the hardest thing I have ever written, but I think the people that have read it, realize that. The flip side is that my low point quickly turned into a high point. We are overwhelmed by the outpouring of support and love. I'm still worried, but most of my fears have been quashed and any doubts I had in humanity are completely dissolved!

It's hard at times to know that everyone knows your dirty secrets, even complete strangers. I have never had so many people read a blog post before. As of today, it had over 1000 hits. I don't have that many Facebook friends. In fact, Geoff and I combined don't have that many. I know that it has been shared beyond the people I know and we have had complete strangers give to the giveforward account and send us checks. I wish there was some way I could hug everyone who has cared enough to help.

Within hours we had multiple offers for Netflix and sleeping bags for E. I didn't know what to do. Finally I decided that the person that offered a sleeping bag first was the appropriate person to respond to, but before I could do that someone else bought sleeping bags for both E and Ella and dropped them off at E's preschool. It's been like this for everything. Someone else paid for a week of aftercare for E and left Target giftcards...Someone else left another giftcard today and that's just preschool. I only know the person that did the sleeping bags, all the other gifts were anonymous surprises and I am clueless. I had no idea that people at E's preschool even knew about the blog and wow, what community!

Today we had someone else that I used to work with when I was in my early 20s (and I was still an immature jerk) send money to cover the tabs for our cars. Again, I'm completely overwhelmed, and unsure how to acknowledge all this amazing goodness without feeling like I'm bragging. I'm just so happy...I've had to explain to E and Ella multiple times in the past 24 hours about crying when you are happy. It's such a relief to know that I will be able to take care of simple basics and pay bills.

I had a friend that has cancer email me and tell me how when she had her last surgery she just kept waiting and hoping someone would offer to help. She really wanted someone to help clean for her, but no one ever did. I know exactly what she means. That is what I usually do and from what I can tell it's what everyone around me tends to do. Geoff and I feel guilty because we have heard from so many people how badly they are hurting financially right now and we wish everyone had the outpouring of support that we have seen. We know everyone's situation is different and we've been dealing with the frustration and humiliation of cancer for well over a year a now.

Every time we have a plan of how to help ourselves things fall apart again, and people don't see that side. I started working at Madison College last February and Geoff took a second job teaching at ITT Tech. Between these two jobs we were confident that we would make enough to pay all our bills and even have enough to set aside a small emergency cushion. In only a few weeks I was diagnosed with terminal cancer and had to start treatment all over again. There are so many reasons this news was devastating and difficult to process, but for me one of the hardest was the financial impact. I couldn't work the hours I had anticipated which meant I wasn't making the money I needed to and all I could think was what if I die and leave Geoff with debt and unable to pay the bills.

It's a really painful and difficult journey. I'm 36. We have two small kids. We really try to not live beyond our means, but life doesn't always work with us and in this last year plus, it has definitely not worked with us. This past 24 hours has been the first time that I have really felt ok. In fact, the night that I wrote the post I slept like a baby (that was the night I slept through a birth call). It was such a relief to come clean and an even bigger relief to know everyone cares and wants to help in whatever way they can. Ok, again I'm worried I'm gushing too much and I'm concerned that there are those reading this and needing the same kind of help (though I hope not).

I need to get some sleep, so I'm going to wrap this up with those two little words that seem incredibly insufficient to me right now...thank you! I love all of you.