Backyard

Obviously I haven't been writing as much lately. Usually I like to write a post most days, but right now I am overwhelmed with trying to catch up on my old school work and do the required prep work for my trip to Kentucky.

Add to that everything else, and I'm not doing a good job of slowing down or honestly, even taking care of myself. It's only a few more days and then being good to myself goes back to the top of my priority list, but right now I just don't have enough time for anything.

This past Thursday was my birthday. It was a wonderful birthday. We talked in advance about going out to eat or doing something special, but in the end I worked late so we settled for Chinese take out. E is at the age where all birthdays equal parties, so he was and still is ecstatic about my birthday. Geoff bought me flowers the night before and then on my birthday, balloons to go along with my cake and presents and I think E wouldn't have had it any other way. Actually, I'm pretty sure it set a precedent in E's world for the minimum expectation for his fourth birthday next month.

For me, this was enough. This was what I had really wanted for my birthday.

Originally I was supposed to be in Kentucky over my birthday and usually that wouldn't have mattered to me, but this year it really bothered me. Initially, I couldn't figure out why, but then it hit me.

This could be it. It's just another birthday to most people, but for me, it really could be my last.

It feels like everything is like that these days. It really is how I view everything and in some ways that's good and at other time I have to mentally turn it off. The hardest part is the reaction of those around me. Geoff has a tendency to adopt the attitude of this isn't over and usually that's great, but sometimes it frustrates me because it seems like I'm not being positive enough. Yet, I don't really see it as me not being positive, more like I'm living every moment like it could be my last. Unfortunately, that in itself causes problems because at times living every moment like it is your last sets an awful high bar.

How would you celebrate your birthday if it was your last? I know some people wouldn't care and others would have a wild and crazy party, but for me, being with my family was all that was really important. I was blessed with many facebook messages and texts and phone calls and I really felt like a princess for a day. I noticed the messages changed this year and it wasn't just me that was thinking that it could be my last...I got a lot of  comments about having "many more" or an "amazing year."

It felt good. At E's preschool the little kids wear a birthday hat and get to sit on a special birthday chair for the day. They are adorable and you can tell how special they feel. I felt exactly like that on my birthday and like all my friends were in on it.

I was able to live the day and think thoughts about how this could be my last birthday and not feel like I was being bad or morbid. Instead I was able to really evaluate what do I want to do and what  my priorities are, and not feel guilty about the choices I make for myself. Even better, I didn't feel like I was surrounded by people who are treating me like I am terminally ill.

I don't plan on dying. I plan on living. In fact, I was talking with Geoff about what my living wishes are and of course I have elaborate wishes of places I want to go and things I want to do, but for right now, my wish is to create a stimulating and fun backyard for my kids. I have spent an extensive amount of time pinning ideas to Pinterest and talking about it with Geoff, so this summer when I have time inbetween clinicals that is what I want to focus on. It may not be what some else would choose, in fact, I'm sure it isn't, but for me it is the right choice.

I want a play space that we can use on a daily basis that will always be fun. I want somewhere that on my sick days my kids can play and be safe and I can relax and be comfortable. I want a place that extends beyond this summer and provides them happiness and stimulation for years to come.

I'll post pictures as we do things, but for right now I have to get through this next week. I still have one more test to take tomorrow and then massive studying of my head to toe physical assessment skills and packing.

Monday morning I have to go in for another lab check first thing in the morning and then I have to be to work by 8:30 because I get to help with an maternal-child simulation. I absolutely love my work and my co-worker. Originally, I was just going to observe and now I get to apply and share some of my midwifery knowledge. Once that's done I will be back to cramming and packing and then my flight leaves for Kentucky at 5 something Tuesday morning.

Quick update

Overall, I am doing really well. The last few days have been overly productive and busy. I have been keeping occupied with studying/homework and various activities with the kids. Actually, I'm still overwhelmed with all I have to get done for school right now, but I'm almost there.

The Neupogen shots are going better the past few days. In other words, less side effects. Though, I frequently have little aches and pains that I wonder is it Neupogen? is metastasis? or is it just normal aches and pains that I am over-reacting to. Really, I think it is the latter.

In the meantime, I need to get some sleep so I can keep studying and work tomorrow. Then tomorrow night is my night alone with the kiddos so it is going to be a long day...but no doubt a good day.

Dear Resident

Dear Resident on-call,

When I called this morning to talk to you about Neupogen injections cramping my style, I tried to not to melodramatic. Apparently, I failed. I do hate the injections! I have only had two and both times I have woken up with raging headaches the next day. Something not normal to me, but is a known side effect of Neupogen.

Yes, I told you I threw up this morning; however, I think a few more questions may have been warranted before you decided that I should drop everything and rush into the emergency dept. Be glad that I am crabby and stubborn and make you reevaluate your plan because it would not have been a pleasant encounter for anyone (ok, now I'm just talking tough, because I know I probably would have still been nice)...

Regardless, one of the skills that healthcare professionals need to learn is assessing the value of what their patient is telling you and how they are telling it to you. Yes, I got right to the point. Yes, I told you I am having raging headaches and throwing up, BUT again, more questions should have been asked. I am a nurse. I am used to calling MDs and telling them what they need to know. I know how to filter out the unnecessary, and even though it isn't intentional I still do it when I am the patient. Actually, I'm probably more inclined to do it when I am the patient because I just want to deal with the problem.

I don't blame you for not picking up any clues to this in my scenario, but seriously telling me to drop everything and drag my miniature monsters to the ED for what we both know would be an eternity...not cool.

So I'm glad you decided to take a little more time and look things up and call me back when I started bitching (ya, I wasn't going to say that, but it's true...I was bitching) about having to come in. Probably, my "are you serious? Really? Really, you really think you need me to come in for this? Can't we talk about this more?" helped make you reevaluate and tipped you off that I was not going to be the most desirable patient.

Anyway, I'm glad you came up with a plan of alternating nausea meds on a schedule and continuing with pain meds. I would have done all that anyway.

I'm frustrated because I don't feel like we ever talked about these damn injections, other than I should keep taking them. I wanted to know if I have any options after this round, or am I stuck to this misery indefinitely. I'm glad you reassured me that I should take them so I can continue to feel better, and travel, and whatever, but hey, I think you missed the point where I said I was doing fine other than these injections, soooooo....addressing my concerns might have been a good idea.

I've tried telling myself that they don't make me feel crappy. Actually, at my husband's suggestion I told myself they give me super human powers (don't judge!), but the reality is, I am going to spend every day for the rest of this cycle dreading bedtime and the morning after.

Worse yet, now I have someone hanging "direct admission" to the hospital over my head. I'M NOT SICK! Everyone will be miserable if I am admitted. No joke. I will be that patient who is ready to go home before I get there. I am fine. I don't want Neupogen, that's all. I'll take it until I talk to someone who will actually help me find some alternative option or talk me into the benefits, but right now, I don't want Neupogen. That is NOT a reason for admission.

I do not have fevers. I am not lethargic. I am not dehydrated. Oh and on that note...I threw up once. That does not warrant having to drink disgusting pedialyte for the rest of my day. That is a sure way to get me to throw up more. I told you I was able to drink juice and keep it down after. I told you I can eat/drink whatever I want. Pedialyte is not necessary. Really.

Ok, I'm going to move on with the rest of my day now. I'm going to go back to playing with my kids and doing homework. Sound like I should be in the hospital? I'll probably go outside, and ooooh, I might go all out and get a donut (I'll post a picture to Facebook later). No I will not be washing it down with pedialyte.

Thank you for your help. Have a great day!

Ginny
(the crabby gyn-onc patient)

24 hours later

It's amazing how much of a difference a day can make.

I woke up this morning feeling kind of crummy and still tired. I wasn't sure if it was the injection or just more of my bad mood so I told Geoff I was going back to sleep and did. I usually don't do this, even if I say I'm going to because it means I ditched him with the kids, but they had fun and I slept. A few hours later I woke up and had breakfast delivered to me in bed, but the best part was there was sunshine outside my windows. Finally!

As soon as I officially got up for the day I buckled down and decided to finish one of my incompletes. The one that was bothering me the most. I took the test in the late afternoon and everything has been so much better since. I feel human again.

So here it is 24 hours later and I can say I am happy, content, relaxed, and optimistic. Really, I know everything will be ok and that's all I need right now.

Rough week

This week has been a rough week and I can't really define why. It was a chemo week which is automatically taxing, but that's not all of it.

Tuesday we were at UW Hospital from around 7 am until 3 or 4 pm. I had to have labs and then a clinic visit before chemo. Then when I have chemo on Tuesdays I have to have my pre-chemo fluids which was a full liter this week, another half liter of anti-nausea meds, a liter of one chemo med, another smaller bag (I didn't pay attention to size b/c by this point I was asleep from benadryl) of my other chemo med, and then some more fluids to flush it all.

On Wednesday and Thursday I only have one med, so everything is relatively quick...usually less than 2 hours (including the wait to start chemo).

I started with an iv in my right hand on Tuesday morning, but that didn't last past the first few minutes. The next iv was in my left hand and that one actually made it the three days. The hardest part was on Wednesday night when Geoff was teaching and I decided to give the kids a bath by myself. I knew going I was going to have to be careful and stick to doing everything with one hand and of course that cursed me so once again Ella pooped in the tub...I did manage to get both kids in and out, rebathed, toys bleached, tub bleached and scrubbed, etc. with one hand, but I was completely exhausted by the time I was done.

Add to that a sick dog that was throwing up and having to scrub carpet and I really wanted to run away from home.

I think most of my rough week stems from being tired, but it is also stress. I need to get school work done and I've never had such a hard time budgeting time to get my work done. My usual study times aren't working for me because I'm too tired. Ok, I'm just tired and I'm not used to this. I've missed work this week because I'm too tired and all of it is frustrating to me.

I know I say I'll prioritize myself first, but that's hard to do. It's never that easy. There are always so many more variables. If I prioritize myself, then what about school, or work, or the kids, or the pets, or Geoff? Geoff looks fried too. Giving the kids consistency means adding daycare days or a babysitter which costs money and when I'm missing days at work, the last thing we can afford is more expenses.

I take care of most of the financial aspects of our lives and right now, I'm completely overwhelmed. I'm overwhelmed by the generosity of our friends and family and I'm overwhelmed that it never seems to be enough. We have great healthcare, but we have been doing this since last July now and I don't know how to keep stretching things.

I finally caved this week and called our mortgage company to see if we have options. It sounds like they are very willing to work with us and give us a reduction, but there is a few day wait while they process everything and get back to us and so right now we are in limbo.

I feel guilty that Geoff and I used any of the cancer cell money to go away for a weekend because I feel like it was irresponsible. At the same time I keep thinking about telling Geoff over the weekend that I felt so relaxed that there was no way the cancer could have survived the weekend and I really meant it. I felt like that one weekend I was actually taking care of myself and enjoying it.

Today I have been in a state of constant stress and trying to reassure myself and refocus myself. I want to be positive. I want to trust in the unknown, but damn it, it would be a lot easier if I felt like I had a cushion of energy, or money, or everything.

Yesterday and today were the first times that I have really struggled to find food that appeals to me at all. Geoff has catered to my every whim and I have definitely had what I want to eat, but that has been exhausting in itself for both of us.

And the icing on the cake is now I have to give myself my injection. Geoff was smart enough to ask about side effects which was of course a good question to ask, but...and this isn't like me...now I'm stressed about the possibility of "flu like" symptoms. I'm sure I won't even have side effects, but I can't let it go. It's so silly. I have an arsenal of anti-nausea meds. I will be ok, but I don't want to take anything else that make me feel crummier or slow me down more. *sigh* I really am on a whining spree.

Fine, as long as I'm on this tangent I have to say it...I'm sick of my hair. It is thinning and falling out, but growing out at the same time and it looks retched. Obviously I can't do anything with it other than cover it up, but the glamorous scarf look doesn't really work because they don't stay on. The hats are ok, but they get too hot, so once again, I'm just too whiney.

I miss my NP and even my oncologists. I haven't seen anyone from my teams in weeks and I have no idea how we are going to schedule my next chemo round since I will be in Kentucky until Wednesday of chemo round 3. We will get it all worked out, but the list of things that I need to take care of seems to be constantly growing and never decreasing

I have a new patient advocate as of last week and I think she is really sweet. I know she is trying to help, but she keeps referring me to the same services I have already used such as integrative medicine, or the oncology acupuncturist. I would love to use the acupuncturist again, but right now it's not an option if I can't pay my bills. Again, I know I said I would put myself first, but I'm not going to get acupuncture whether it is $20 or $100 unless I know that my household needs are taken care of.

I want to take care of myself. I really do. I want to take care of my family. That's just how I am. I want to be responsible and all of this is so degrading and frustrating at times. I believe in radical acceptance and mindfulness as part of my daily life, but right now I am really struggling.

Tragedy

I haven't written much lately. Each night I plan to write, but it hasn't seemed to work lately. I am tired and sleep trumps blog posts.

For the most part I don't think it is "cancer tired" as much as "mom tired." When the cancer came back I said I was going to take it easier and to some degrees I am, but overall, not really. I'm worried about making sure everything is taken care of in case I do get really sick. With two small children that means laundry washed and put away, a bag of special treats (books, toys, etc.) always packed and updated, and all the basic kid food staples well stocked. Same thing for the pets. This alone can be exhausting.

Then I'm still trying to manage school work, and real work, though I will be the first to admit I'm not working as many hours as I am supposed to per week. Work has been amazing and supportive, but I have a hard time not feeling guilty. I feel like I'm letting work down and I feel like I'm letting my family down because I'm not making what I am supposed to. At the same time, the days I work, I come home and crash shortly after getting the kids to bed. Sometimes I stay up, but if I do, it's only to veg out and watch tv.

I am overwhelmed by all I feel like I need to do. Everyone tells me to take it easy, but that is always easier said than done. So many people want to help, but I haven't quite figured out how to have people help get naps for myself and maintain consistency and stability for the kids, etc. It's really not as easy as it sounds. Plus how do you have someone help decide what is junk mail and what isn't? Geoff can't even do that sometimes.

I work in a profession that specializes in delegation. While I know that I prefer to do things myself, I'm also pretty good about delegating or asking for help. Or so I thought. Right now, I just feel like there is too much to do and not enough of me to go around.

Unfortunately under our circumstances, money is the opposite. We are fortunate enough to have great insurance, but we have medical bills coming in because our flex plans haven't fully reimbursed our deductibles yet. We have the "Cancer Cell Sale" and we used some of the money to do our spa weekend, but we are afraid to use more because we don't know what's ahead. Meanwhile I've missed enough work that I didn't get a paycheck for awhile and even now when I do, it's not always what it needs to be, so we are literally living paycheck to paycheck.

I have always considered myself to be a fairly private person. I have always taken pride in being stubbornly independent. It's not that I feel like I have anything to prove, I just like to do things myself. Actually I guess I like to prove it to myself. This experience has changed all that. I don't feel like I can do it all myself anymore. I don't like trying to do everything myself anymore.

Today I spent the better part of the day frustrated, emotional, and crying. The entire day felt like a tragedy to me. I was worried about dying and not seeing my kids grow up. I was worried about the prognosis I was given and if I was being naive by choosing to be optimistic and live. I was worried how we are going to pay the mortgage, and the bills. I worried about what will happen this summer when I am not working or if I can't work. I thought about cutting off the cable and whether we should be making more sacrifices or if our expectations are too high.

I felt guilty too. I feel guilty for all the help we have received. It's overwhelming really. We have help with housekeeping, and we have had so many meals, or meal gift cards, or grocery gift cards, or gas cards, or financial help, or help with our pets from doggy daycare, to food, to vet help. Then there are all the books, and "pick me ups." I feel guilty because I'm terrible with "thank you" cards and because I feel like I am absorbing more help from the universe than I am able to give back. Ok, I admit it. I'm not very good at accepting help. I appreciate all of it, but it is hard for me to think it is really ok.

So I cried. Then I got ornery at Geoff because of everything I felt I needed to do. I was frustrated because I felt like I was doing everything and it still wasn't enough and hell, I don't even know...so I cried some more.

Really it wasn't a good day.

Then I checked my email and saw an email from Geoff's brother saying he and his wife were ok. They live in Boston and had spent part of the day at the marathon, but had headed back to their labs (they are doing their post-docs) before any of the tragedy struck. This was before I had even seen anything on Yahoo, so I saw the first couple of news reports and realized that my problems were insignificant compared to a lot of other families. I pondered what the lives of those injured or their families are like today or will be like in the days ahead and I realized that there is no way to really understand other than living it.

People have no idea what our live is really like. Some days it is easier than it seems like it should be, and other days it is overwhelmingly hard and scary. I can't think of my own future right now because I have no idea what that picture includes. I used to dream about being done with school and being a midwife and rarely I can think about that, but that's about it. Even picturing my kids in kindergarten is too painful because I don't know if I will get to see it. It's incredibly painful...and in some way there are hundreds of families going through their own nightmares right now.

...and all I can do is pray for hope and peace for all of them.

As I was skimming the headlines, I saw something about tax day being associated with tragedies. I had to glance at the little date on the lower left of my computer screen to see that it was in fact April 15th. I usually do our taxes in February or early March so I pay no attention to "tax day." I had never realized there were "tax day tragedies" before. Then it hit me. Two years ago today (almost exactly from when I am writing this post) one of the loves of my life died. For me it was one of the biggest tragedies.

Jeffy in 2009

Jeffy, my dog, had been sick and was spending the night at the emergency clinic on IV fluids while I was at work. Everyone thought he was stable. I was annoyed when I dropped him off  because the clinic was busy and they left me sitting with him for over an hour and made me late for work. In retrospect, I wish I would have spent that time completely focused on him instead of grumbling anxiously about how I needed them to hurry up. I honestly had no idea that I wouldn't see him as planned the next morning. Instead I got a phone call a few hours later telling me that he wasn't doing very well and I might want to come see him. As I was making arrangements for my patients and trying to leave work I got another phone call telling me he was coding.

Jeffy sleeping with baby E

I would have done anything for him. Anything. I knew from his previous status he wasn't doing well and his prognosis was "very poor." I knew the right thing was to tell them to let him go, and the words came from my mouth, but not my heart. It was one of the most painful things I have ever had to do and honestly, I've never recovered from it.

Later that night I sat in a room in the emergency clinic with the shell of my beloved Jefferson against my massively pregnant belly (Ella). The room happened to be the same room of the same emergency clinic that we said good-bye to the only other dog we have had together on Christmas day of 2008 when I was pregnant with E.

Silly Chester

It's been two years and yet it still hurts like it was yesterday.

Originally I had no idea what the date was today. I couldn't figure out why everything seemed to be so wrong, but once I saw the date I immediately understood the tragic significance. For me, it is a date I will never fully recover from. A piece of my heart left me that day.

Two years later a piece of my heart has left me again as I think about all the people hurt today in Boston. I can't even wrap my head around "killed" because I can't deal with idea of death right now.

I'm sorry if it is shallow of me to talk about my bad day and my loss in comparison to today's events. Sometimes it feels as if death is always hovering around a corner from me waiting for me to take note of it, and today seemed to be a day filled with it in one way or another.

Tomorrow (today) will be better. Assuming my labs are good, it will be a chemo day and the only death that I'm going to worry about is the not-so-tragic death of cancer cells.

(Top to bottom: Haille, Jeffy, E, Carmin, Toshi)

Jeffy and "his" cat, Turbo

Jeffy sunning himself with my childhood dog, Minnie, and my brother's family's dog, Tatze...Puppy Jeffy...and Jeffy with his bff, Puddy

Educated Jeffy

Sweet sleeping Jeffy

Food Poisoning

I have had great aspirations of writing a blog post for the past few days. I had every intention of writing last night, and just as I was about to sit down to write I became violently ill. I felt like some had kicked me in the stomach repeatedly, so I just kind of balled up in the bathroom. Geoff and I figured it had to be food poisoning so he quickly recounted the differences in our diet from the day. Eventually I was able to shuffle hunched over to the bed and I balled up with a heating pad and a bucket (just in case). As a distraction we watched a little tv and then went to sleep.

Today the kids and I are making a quick trip with my parents to Chicago for wedding shower. Hopefully I'll have something more interesting to write about tonight.

Wednesday evenings

As I have mentioned before Wednesday evenings Geoff teaches math at ITT Tech. He applied for this position while I was on the mend from Cancer round 1 and we were debating our options. He accepted just before the 3 month check up that turned our world back upside down. We thought this was going help us catch up from round 1 and give us a little cushion...little did we know what was really in store for us.

Regardless, it turned out to be a good thing. The one questions we both have had going forward is how will I handle Wed. evenings at home alone with the kiddos. Just to be clear, I am a perfectly capable mom. I have always tried to be home with my kiddos as much as possible and until last year when I accepted a different position we had never used daycare and very rarely used a babysitter. This was because I worked nights and was home during the days with the kiddos and I loved it (most of the time...sometimes I just wanted to sleep).

Anyway, the current problem is we know what chemo/radiation was like the first time and both of us have been worried about my being exhausted on Wednesdays and home alone with two little kids. We both acknowledge our concerns, but we have just adopted a week-by-week basis. In the end, it has turned out to be a mute point. I miss Geoff, but Wednesday evenings have turned out to some of my favorite nights of the week.

A few weeks ago the kids and I had a "barn night" (see Free Flow) after a visit from a good friend. Tonight that same good friend brought her kids, and dinner and we had time to talk while the kids played (and I ogled over her baby). She was even effortlessly successful at getting E to eat broccoli, which essentially elevates her to goddess status in my world. Oh, and she brought watermelon...my favorite food. So what I'm trying to say is that I'm really learning to like these Wed. nights because they have turned into something different and fun.

I still don't overly enjoy the part where I'm dragging and trying to get two munchkins to bed at the same time. Inevitably I end up missing my window of perfect bedtime with E a little and then I spend the rest of the time telling him to go to sleep. Currently it is nearly 10 pm and he is crying because I once again told him it was time to go to sleep. We already read a bunch of stories and he knows the routine, but he would stay up all night reading books if we let him. Not such a bad thing, if you don't mind overly cranky nearly 4 olds that you have to drag out of bed to get to preschool in the morning.

In other news, I was driving home from picking up Ella today. I ran my hand through the stubble on the top of my head, formerly known as my hair, and I noticed a few hairs on my hand. Of course I repeated this gesture and sure enough, more hair. *sigh* So then I did the only logical thing...I rubbed my head a bunch and I saw little hairs flying everywhere. Anyone want to start a pool on when I will officially be completely bald? Oh well, I'm counting on this meaning I don't have to shave my legs. That is a definite silver lining for me.

...and I think I may have two sleeping kids so I am off have some "me time"

On again off again

I'm starting to feel like my relationship with cancer is on again, off again. It was here and then it was gone, then it comes back, and now I'm saying "good-bye. We are through. I mean it this time. I am done."

Over these past few weeks I have continued to feel great. I am eating, sleeping, playing with my kids, working, etc. I have had a few days in the last week where it seems that some of my activities have finally caught up with me and I have needed to just sleep, but I'm still amazed.

Today I was scheduled to start round 2 of chemo. Everything seemed pretty straight-forward. I had my labs drawn and an IV placed and then we headed downstairs for an oncology appointment. I met one of the physician assistants (Geoff has met her before). She was very nice and she asked the usual questions and did a quick physical. Then she pulled up my labs from this morning. I was looking over her shoulder and the first thing I saw was that my RBC (red blood cells) and my H & H (hemoglobin & hematocrit) all went up. This is good. These are indicators of anemia. Then I saw my WBC (white blood cells) and my neutrophils (a more specific type of WBC) and I groaned. Both of these are indicators of immune function and I'm not doing so well in that category right now.

I find it hard to decide how to explain any of this here in my blog because so many of my friends are nurses or in healthcare professions and yet, so many are not. The normal plan after chemo is on day 10 I have labs drawn because this "should" correlate with my peak lows. I did have low numbers on day 10, but the numbers today were even lower. As an example, the normal range for WBC is supposed to be about 3.5-10.5 billion cells/L. Today mine was 1 something. Not awesome.

I was curious why they might be so much lower today. As it turns out, previous pelvic radiation can influence the rebound of WBC/neutrophil production. WBC's are produced in bone marrow and an important site of bone marrow production is the hip bones. Since I have had pelvic radiation including my hip bones, it can be a slower process for the regeneration of WBC's.

Well, that sucks.

A lot.

So I didn't qualify for chemo today. I never expected or planned for that.

It's funny how you think you don't want something until you can't have it. Suddenly I really wanted chemo today, but I know holding off is the right decision. Of course, this led to many more questions. 

The hardest part is that I was supposed to be in Kentucky next Thursday for Clinical Bound (my clinical intensive training for school). There was discussion of moving my chemo schedule from Tues, Wed, Thurs to Mon, Tues, Wed, but then there was more discussion about whether that would work with a neupogen injection. Neupogen is medication that I will most likely get after chemo treatments in the future to help stimulate WBC production/help against neutropenia.

An oncologist came in and sat down with us and the PA (physician assistant) and all of us talked and in the end it was decided that the best and least stressful option would be for me to see if I could reschedule my trip to Kentucky to April 30th. I hadn't bought tickets yet just in case something like this happened, so as soon as I got home I contacted the dean, the program director, my adviser, and my clinical adviser, and let them know about my current situation (all of them know me too well and are in constant contact with me). In less than a minute the dean wrote me back that the schedule change was taken care of.

So now my job is to take it easy and get those numbers back up so I can have chemo next week as planned. Then I will follow my three days with a neupogen injection and I will have my day 10 labs checked right before I go to Kentucky.

I'm not going to deny that I am enjoying a little break, but since I am pretty set on being done with cancer and living, I need to be "back on" with my chemo treatments.

Cut and Paste

Per Geoff's suggestion tonight's blog post is going to be a cut and paste of the update from the Cancer Cell Sale site...We had a wonderful weekend and now I'm tired. I have an insane amount of reading and testing to get through this week to finally finish my incompletes and then I need to immediately jump into prep work for Clinical Bound (my clinical intensive training) which starts April 18th. Most importantly I need to stay ahead on my sleep, so here goes...

 

4/5/13-4/7/13 Thanks to everyone's support Geoff and I took a little weekend getaway. It is the first time I have ever left both of the kiddos and the only time I can think of since Geoff and I have been married (6 years) that we have gone away by ourselves.
We spent the weekend at the Osthoff Resort in a Spa suite. We had couples massages and I also had Reiki done. Much of the rest of the time we spent in the whirlpool tub in our room, walking the grounds, or relaxing.
I never would have done this if it wasn't for all of you and I have to say it was the most healing thing I have ever done. It was completely the opposite of all the medical treatments and being poked and prodded.
A friend of mine met us this morning and did a voluntary photo session of us and in the end I felt like a princess. We are home now and happy to be reunited with our little family. Thank you so much!
love,
Gin

Tired

Yesterday went pretty well. I was really excited to be back at work. I showed up with energy and ready to go, but after a few hours my energy sort of fizzled out. In the end I didn't quite do 6 hours.

I have days like that where my energy just is gone all of a sudden and all I want to do is sleep. I left work with the greatest of intentions of going home to sleep, but life had other plans. I ended up having to pick up Ella from daycare bc it was a Wednesday and Geoff needed to get to his teaching job. Then I had to pick up 2 of our dogs from doggy daycare. Finally after all of that I got to go home.

Fortunately for me, my mom and godmother were waiting for me. They helped with the kiddos and ran off to the store to "make dinner." They were gone just long enough for me to give Ella a quick bath to remove the pink paint that was on her arms, face, hair...yes, hair. I don't fault daycare one bit. Last weekend at the Children's Museum Ella managed to sneak away from four adults for about 30 seconds. Next thing I knew she was covered in purple. Outfit, face, hands, pretty much everything. I was not happy with her, but I was also not surprised.

Anyway, after dinner, my mom and godmother helped me clean up and then they left to head back to my parents (a few hours away). I let the kids watch a little tv while I made cupcakes for E's preschool class today and then while those were baking I put Ella to bed. Very shortly after that I put E to bed and then I put myself to bed. I was out cold long before Geoff was home.

I vaguely remember talking to Geoff for a minute when he came home but then I went back to sleep. I got more sleep last night than I have in a long time, yet I was wiped again this morning. This morning was the first time I felt really crummy as I got up, but it didn't take long before that improved. Unfortunately the exhaustion didn't. In the end I stayed home from work to sleep, but of course that didn't work either. Once I could physically sleep, I mentally couldn't.

For the most part I took it easy and tried to work on my never ending list of things to do in the company of my heating pad. Now it's nearly 10 pm and I'm crashing and there is still a million things to do like pack diapers for Daycare tomorrow, or put the dogs out one more time, or pack for the weekend (for all of us of course)...I guess some of it will just have to wait until tomorrow.

Ok

Tomorrow is my first day back at work. It feels a little weird to say that, since I was only employed by Madison College for a few weeks before all this happened. In fact, I think I've had nearly as much time off work as I have spent working. Regardless, I'm looking forward to it. I'm also a little stressed by it or rather some of the other decisions associated with it.

I feel bad that I'm not going back to hospital nursing. I know I can't do floor nursing right now. I can't put my needs in the background for extended periods of time so I can focus on someone else's needs. I don't have the energy levels to handle a really busy shift, even if that shift is only 6 hours. Most of all, I definitely don't have it in me right now to deal with other people's life and death circumstances. I know it's not selfish to say that, really I do, but it makes me feel bad that I have to say that.

On the other hand, for those of you who are not Facebook friends of mine or don't use Facebook, I have decided not to take a leave of absence from school. This is a little nuts because I need to finish my incompletes asap (I'm trying...) and next week starts my new term. More importantly, on the 18th I need to be in Kentucky for a week for what is known as Clinical Bound. This is essentially a one week intensive clinical training. It's where we officially test out on our ability to do a full head to toe physical exam of an adult and newborn. It's also where we learn things like pelvic exams, suturing, inserting IUD's, etc. Basically, it is vagina camp and it is the gateway to my clinical learning. I feel like I have so much to do before I go. I'm nervous and excited and I'm looking forward to seeing old friends and making new ones.

I finally decided Sunday night to go ahead with school. All along I thought I was going to take a leave of absence for a bit, but at the same time, I couldn't commit to it. It never felt right. On Sunday my clinical adviser flew into Madison to meet with the UW Midwives about my clinical rotation. She knew that I was planning to take a leave of absence, but already had this meeting scheduled. She and I talked a little via email and then we decided to meet up while she was in town. Being able to talk with someone in person made a huge difference for me. I was able to get some clarity to some of questions and to feel like I have some room to slow down. This made all the difference to me. I came home and talked with Geoff and I sent out a bunch of emails to make it "official."

Geoff's biggest concern was/is making sure I take care of myself. I agree. Right now my biggest concern is making sure I follow through on that promise while I try to juggle a relatively full schedule for a few weeks.

This weekend Geoff and I are going away for two nights without our kids for the first time ever. We are going to have a couples massage and some other spa time. We are both pretty excited. It's weird to think that less then 48 hours later, Tuesday morning, I have chemo again.

In all honestly, I'm both excited and dreading chemo too. I want to win so I'm looking forward to that next treatment, but I'm scared. I called last week to find out my lab values and was surprised to find that I was once again neutropenic. Yesterday, I actually saw all my I numbers and they sucked. I am just as anemic, if not worse, than when I had my last transfusion, but I'm not at all symptomatic right now. I am definitely neutropenic, as in numbers almost as low as when I finished chemo last time, but I don't feel that either. My platelet count is also as low as when I finished chemo last time. I keep wondering if it was really my blood that these lab values came from. It just doesn't seem right, but I know it is. I'm wondering what will happen the next time. Are we going to be playing the limbo "how low can we go?" already? I sure hope not!

Regardless, I think the power of positive thinking is what makes all the difference. I know my body heals rapidly and I feel an aura of love that follows me everywhere I go right now. I just need to let go of the stress and take each day one at a time and it will all be ok.

When bath time goes bad...really, really bad

Tonight when Geoff came home from work we took the kids outside to play. They have been asking to go out to play more and more and today was the first time this week that everything worked out for all of us to have some outside time together.

E asked me to draw "hopscotch" for him. He knew about it from a Highlights (magazine for kids) story he loves. He and Geoff went on a hunt to find a rock to play hopscotch with. Then I tried to explain hopscotch to both boys and approximately 2 minutes later everyone had moved onto bigger and better things. Ella occupied herself with a ball initially and then E decided he needed one too. We played catch and soccer with them while playing frisbee with each other. Then the neighbor kids came out to play.

It's always a big deal in our neighborhood when it is nice enough for everyone to go outside. Everyone tends to play outside all summer long and we all see each other daily. Then some time around October/November we stop seeing each other outside. We might see each other as we drive down the street or get our mail, but we don't really see each other again until spring. The most amazing part to us has always been seeing how much all the neighbor kids have grown. When we moved into our house a few of the neighbor kids were in the range of 18 months-2 years. Today one of those kids was showing us how he had lost another tooth. It was fascinating to look at him and then look at Ella and think that in a way we will always think of him as her age because that is when we first met him.

It was fun in other ways too because the adults get to talk and catch up. We have new neighbors that most of us haven't met yet and some old neighbors that just closed on their new house today. We will be very sad to see them go, but we are happy for them because they were able to get the home they have been dreaming of.

Eventually it was just too cold to stay outside anymore and E declared that his "knees are too cold." How can you resist that? So inside we went. We had a wonderful dinner as we tend to always do these days because most all our dinners are specially made for us. At the end of that dinner E was goofing around and fell off his chair (again...this happens a lot...) and pulled his big kid glass of milk down on top of himself.

I had already decided that Ella needed a bath, but E sealed the deal, so off to a bath it was. E is currently obsessed with grape bubble bath so I made sure there were lots of bubbles and in they went. They played happily while I read research articles for school. Then I told them it was time to get out. I started to let out the water and E started shrieking about Ella pooping.

Sure enough, she did.

I nearly cried. I hate bath tub poop. It is so disgusting! Why don't people tell you about this before you have kids? (ok, it wouldn't have stopped me, but seriously...)

Geoff swooped in and together we removed all the toys from the tub for a good bleaching and then he gave each of the kids a shower and cleaned the tub while I got the kids in their pjs. E chattered away happily about Ella being on Santa's naughty list now and not getting any presents and I inwardly groaned for ever using that as motivation to get him to behave.