Bad news

So I had my scans on Friday morning. Overall the physical scans were fine. Nothing spectacular sticks out. No particularly good omens, but no bad ones either.

I was automatically scheduled for the scanner I like in the morning and I had set up an appointment with my gyn onc NP in the afternoon.

The scans didn't take very long, so Geoff and I had a few hours to ourselves in between. On the way out of the hospital we stopped to smell the roses (not the main entrance for those wondering what I'm talking about), then we heard the UW marching band practicing. We found the practice field and watched them for a little bit. I was thrilled to have street sweeper come by at the same time (I have a secret inexplicable love for street sweepers). Then we went for lunch and made a quick trip to one of our favorite garden centers.

We were back in time for the 1 pm appointment. We were put in a room right away and a little bit later we were told they were still waiting on results. At about 2 I started to panic. I'd been guarded about everything up until that point but ok. Then suddenly it just didn't seem right. Geoff reassured me it was fine and this always happens (the delay). Just as I was about to start up again the door opened and in walked my NP. 

She was smiling and my instant reaction was "oh thank god!" but then she started talking. Everything she was saying was about how she wasn't supposed to have to give me bad news, that was the deal, and that she debated sitting in the back all day hoping it would change...I wish that would have worked.

Anyway, the results weren't good. Some of the sites that had regressed are back and there are new sites including the one I found a week before. I actually looked at my own scan so I was able to verify. I guess the good part of that is I don't have to wonder about my skill level at finding enlarged lymph nodes on patients. I'm pretty sure I can do it since I found this one all on my own.

We talked about the results some more and then my NP asked if we wanted to see one of the oncologists. It's not my oncologist, but we know her very well bc I would frequently see her on Tuesday mornings before chemo (aka chemo clinic). My oncologist doesn't do chemo clinic so I always had to see one of the others and this was our favorite. I knew it wasn't going to set anything in stone, but I said "sure, why not."

It took a little while before they both returned. Geoff and I talked and cried. I debated leaving multiple times. Then they came back and honestly, I wanted to run. I'm not claustrophobic, but I felt trapped at that moment. We were stuck in a little corner with people and equipment blocking our way to the door on the other side of the room. I kept thinking who the hell designed these rooms? They've obviously never been given bad news and this is a damn oncology clinic. What do you expect?

The oncologist expressed her anger and frustration with the cancer. She told us we have options and talked about them a bit. She brought me journal articles to read about the options. She reassured me she would talk to my oncologist before we saw him Monday so he would know what she had already talked to us about.

I asked her if she thought it was still worth trying the treatments, fully acknowledging that it didn't matter what she said I was going to go for it anyway. She has a great bedside manner and she assured us it was, but then acknowledged that they would do whatever I want at the point. Then she was bluntly honest and said that if I wanted to stop they would respect it, but try to talk me out of it. I reassured them that I want to fight this. Both my NP and the oncologist agreed they would do the same.

Then she talked about how this was never going to be an easy fight and how frustrating it has been. The treatments seem to make the cancer go away and then it seems to find a way to outsmart us and come back. She looked me in the eyes and told me it is going to take a miracle.

After that I don't know what anyone said. I already knew what she verbalized, but everything seemed too close in and all I cared about was being done. I nodded yes to everything and got out of there as fast as possible.

It's the second time this year that I was told I'm going to die. There was a lot of hope in the middle and suddenly it was all gone. I was told if I did nothing she was fairly certain I would still be here in 6 months. 6 months? That's next February! 

Geoff and I left two hours later with heavy hearts and feeling crushed. We talked endlessly and both agreed we didn't feel like facing anyone. Though I have to insert that I did see an old friend as we were leaving the hospital. Her oldest and E are almost the same age and we used to go to mother-baby hour together. She is a nurse and was discharging a patient. She gave me a hug and honestly, it made my day.

After that, despite not wanting to be social we decided to run to my work. I had started back the day before and I wanted to show Geoff the labs and my new office before it was crowded with students. I introduced him to my co-worker who he knows I idolize. At the same time we discussed whether I should quit my job and/or school. I've been told multiple times I could go on social security and while there is temptation to not have to work and to be able to do what I want with my never enough time, I love my job. I don't want to be on social security and I don't want to give up on life.

We headed home and talked more and both realized we had done a lot of things differently since the last scan. I had changed my diet, I had been getting a lot more sleep, I had been practicing daily affirmations and meditation, and multiple other alternative therapies before the scan in May. After the mid-chemo scans everything regressed. Not just a little, but a lot. I frequently live off of 5 hours/night sleep. I have a terrible diet. I'm constantly trying to do too much with too little time which means I'm always stressed.

I've known this was going to come back to bite me and I don't think it is the only reason the scans were bad, but I definitely think it contributed. In all honesty, my first thought about the bad scans was I guess I have more to learn.

Cancer has taught me a lot. It has given me perspective and wisdom I didn't have and I'm not sure I would get otherwise. For everything I have lost, I have gained something else. It hasn't always been worth it, and certainly I would have chosen a different path, but I am able to see the gifts I have been given from this difficult path.

At this time, I'm still processing it all. I'm pissed that I'm not in remission and I have to start chemo again. I'm afraid of what I'm going to loose this time. I'm more afraid than ever that I'll loose my life and  I won't get to be with my family or see my wonderful kids grow up. All of this hurts too deeply for words. I'm frustrated that I have worked so hard in school and life and I may never get to see the fruits of my labor. It all seems so unfair.

At the same time, I believe in miracles and I believe that I am meant to be one. I believe that I need to take better care of myself and prioritize my needs more instead of just talking about it. I need to find ways to eliminate stress in my life and live more simplify. I need time for meditation, yoga, massage, reiki, and other healing therapies.

I can't cure myself, but I can heal myself, so that is what I'm going to do. It doesn't hurt to try.

On that note, I don't want to worry about getting to the gym or Gilda's for yoga classes or whether or not I'm able to keep up with others. I was wondering if anyone had any yoga DVDs they are no longer using that they would care to share or (ahem) copy or even recommend? I'd rather not spend the money only to find out I don't really like the one that's packaging most attracted me. 

Tomorrow I go back and we will talk with my normal oncologist. We'll see what he recommends. His previous plan B and C were not the same as what was recommended on Friday so I'm telling myself we have many options, though I know that is quickly fading too. It sucks to have to make choices when you don't feel like you fully understand all the options and your life is on the line. There is always this sense of hurry, hurry, hurry and make decisions ASAP, but I want to know what I'm really deciding this time and I want to know that it is what is right for me and my family. 

Virtual Cabin

I have my next big scans on Friday. I am starting to get stressed by them, though overall I am (doing pretty well. Mostly this is because I am too busy to think straight most of the time.

When I decided to forgo my radiation oncologist's advice to quit school and stop working and just enjoy my family, I did not envision stressing myself out or working myself to exhaustion. 

While this week I have finally managed to incorporate a small bike ride, and horseback rides, I have not managed to incorporate any regular yoga, meditation, or adequate amounts of sleep. Tonight is also the first night this week that I have not passed out as Geoff was trying to get the kids to sleep (I'm pretty sure it is not a coincidence that it also the first day in a long time that I had no, yes that's right, NO narcotics! yes! Just say no to Norco!)

Anyway, I have done some serious thinking about what is stressing me out the most the past few days and what I can do to make it better. I've talked to Geoff because I'm not happy with the way my life is and I also talked with my wellness group tonight at Gilda's Club. It was at Gilda's that someone suggested that since I can't just up and leave my life right now...clinicals, work starts again this week, etc. but I'm tired and feel stretched beyond my limits that I need to tell everyone I'm going to my "virtual cabin."

This seemed like a great idea. I'm terrible with setting boundaries and advocating for myself, but honestly I need a little break. I know that the next few days are going to be very taxing on me and the family. Tomorrow I am doing a 12 hour call shift, Thursday I'm working, and Friday I have my scans. Thursday night Geoff teaches and I have a commitment at Gilda's Club (thankfully once again they are providing their wonderful free childcare so I can go).

In other words, these next few days there is going to be very little downtime for me. There is also going to be very little time for us as a family. Scans are hard for cancer patients and their families. This is one of the things that is constantly reinforced as our new normal by our Gilda family. It isn't just us, it's everyone. Results of scans, good or bad, are also hard. 

On this note, I've decided that I'm headed to my virtual cabin. I wish I was actually going somewhere I could sleep in, swim, sunbathe, and go for nature walks, but for now this is going to have to do. It doesn't mean I'm completely unattainable, or that I'm not going to get on Facebook, it just means that I'm going to do what I need for me for the next few days and if I'm feeling overwhelmed or tired I may not respond to messages and texts right away. For right now I'm planning on staying at said virtual cabin at least through Friday, probably through Saturday, and maybe even next week if I need to.

I plan to post some sort of preliminary results on Friday as that was the original purpose of this blog. We won't have any idea of treatment or not treatment plans until next week, but we will let you know what we know. I love all of you and don't want to upset or worry anyone. I just need some simplicity. My life is suddenly much more complicated than I want it to be again and I feel pushed to the max. I need to slow down and take care of myself a little and have the energy to enjoy my kids.

Cellulitis

So I finished Neupogen on Thursday night. Woot! Woot! Yes, it was a difficult night, but I (we) got through it.

Friday morning I didn't feel so hot but I headed off to clinical. About an hour or so later I was putting on or taking off gloves for some form of gyn exam and I realized my right hand felt like it was on fire. I glanced at it and immediately thought to myself "you have to be kidding." It was red and puffy. Next, I pulled out a mini purple sharpie I had in my pocket and traced around the margins of the redness.

I have to point out a couple of things about this...First of all I'm right handed, so using my left hand to draw on my right hand made me look like a toddler had scribbled on my hand. Not very professional. Second of all, speaking of toddlers...let me just say I should probably have thought what I was doing through better at the time because as I was drawing on my hand I looked up to see the toddler in my current appointment watching carefully, then smile shyly, and then even bigger as we shared a secret...I was obviously doing something naughty. Something I fear that toddler went home and repeated. How professional of me. *groan*

After the appointment I asked the midwife I was working with if she minded looking at my hand. She agreed with my diagnosis, cellulitis. Basically an infection of the soft tissue. My hand was warm to the touch, but I was pretty sure I didn't have a fever. Yes, I was in a clinic, but I didn't feel like taking my temp. Don't worry I got razzed about that plenty later on. Anyway, the midwife's exact words were "you're going to need to get that looked at." Of course.

I thought about for a few more appointments and then called my NP. I was already playing phone tag with her about scheduling an appointment with her after my scans on Friday so I can get some results right away without waiting over the weekend. Of course the biggest issue with this is if these scans don't go well, then I still have to wait until Monday for some sort of plan. The way I see it, I'll still be waiting until Monday for an official plan but now there is a chance I'll get some sleep next weekend and won't cry the whole way through. A chance...

Of course this is where I point out that I found an enlarged lymph node near my left clavicle Friday night. It feels like a marble. Geoff and I have speculated over it all weekend and finally decided to write it off to my recent sinus infection. I'm hoping we were right and not just kidding ourselves because it does seem to be smaller tonight but it's hard to tell for sure since I'm pretty sunburned right now.

So cellulitis...

Eventually the phone tag ended and I took the last appointment of the day, 3pm Friday. This allowed me to see a few more appointments and salvage some of my day with my very unprofessional purple scribbled hand. As it turns out, it did appear to be cellulitis. Which in case you are wondering hurts like hell.

I don't think it looks too bad, esp. after a few days of antibiotics, but there is still a nice red lump that feels like a hammer just slammed down on it. It's also still a little puffy and warm. Grrr. On the plus side, my NP is awesome and worked with me to find antibiotics that would also work on my sinus infection. Hallelujah! This is most wonderful because my stupid sinus infection was making life miserable! I had constant headaches and all my teeth hurt, and I couldn't taste or smell anything for days. 

Since I can't currently take Ibuprofen, I've been taking Norco (the narcotic) I've talked about before, to tolerate life. Unfortunately I was taking 1.5 pills every 4-6 hours and that is way too much for me so my brain was complete mush. I couldn't think straight for anything. I'm kind of a wuss about pain meds.

I'm happy that I no longer need to take anything more than 1 Norco at a time and that I can stretch it out longer than that. I'm even more happy to be able to taste and smell again, but I wish the hand stuff would be done. I also kind of wish we knew what caused it. There was an old IV site in the vicinity, so that's the likely explanation.

Regardless we managed to have a really nice weekend which I'll include pics of in my next post and now I'm wiped and taking it easy while Geoff wrangles the two wild beasts into pjs and bed (they'll come see me for story time).

Neupogen

Tonight is my last neupogen night. Hopefully forever.

Words can't express how happy that would make me if I was capable of feeling happiness right now.

I know that sounds dramatic, but honestly I feel terrible.

In the past 10 minutes I've made Geoff run and dive for the trash can because I was gagging and dry heaving. Then the wave of nausea subsided only to be followed by another. Then I started getting extremely sharp, shooting pains in my left hip bone. It felt like someone was stabbing me. I'm not sure exactly when I started crying, but that's where I am right now.

I have an hour before I can take pain or nausea meds again. I'd love to just take some Ibuprofen, but that is not an option right now. Today is a week out from my last chemo round. This means I had my labs drawn earlier today. Usually when I have my week post chemo labs drawn my platelets are really low. This means I am at an increased risk of bleeding. Normal platelet levels are 150-450 (well really written 150,000-450,000 per microliter). Mine are usually somewhere between 55-65. This isn't critically low, but it does mean I bruise easily and I can't take NSAIDs (non-steroidal anti-inflammatory drugs) like Ibuprofen.

I also don't want to push the limits of Tylenol, so I take it in smaller doses mixed with a narcotic, essentially what is most commonly known as Vicoden. I obsess all the time about needing too much pain meds. I hate that I take narcotics, but I didn't take them on a schedule for part of today and this what happens when I'm in the middle of a neupogen week and I get off schedule.

Honestly, it makes me feel I'm a "user."

I have another hour before I can take anything so I'm tucked in bed with my heating pad and bed buddies (mentioned in previous post) while I tough it out. I'm writing as a means to distract myself and honestly, I'm not sure how well any of it is working.

The worst of it is that I still have to take my last dose. I'm so tempted to throw it away, but I keep chanting in my head "this is the last one...this is the last one..." It really doesn't help.

Ok, actually that isn't the worst of it...the worst of it is, remember the stabbing pain? That pain is very similar to what I had before the scan that showed the cancer had spread. I have it every time I'm on a neupogen week and for the week after too. Neupogen gives me "flu-like symptoms" and "bone pain." Unfortunately the bone pain happens to be in the same places and a similar sensation to what I associate as cancer metastasis.

My next set of scans is next Friday. I've been pretty good about keeping a level head about it all, but it's almost impossible to keep yourself distracted from all the what ifs when you are living with a frequent, if not constant, painful and realistic impression of metastasis.

Also, I should mention that the little bit of hair I have currently feels like someone is constantly trying to pull it out. It hasn't all fallen out, but I wish it had bc it also hurts so bad. I constantly debate shaving it again because it gives me relief, but I know it will all subside in a few days again.

Did I mention that I'm supposed to be up early for a full day of office visits for school in the morning? I've already missed two days in the past week for not feeling well. I guess it is appropriate for me to insert a "cancer sucks!" statement here.

Well, I'm not crying anymore. That's a good thing...and it's almost time for me to take more meds and go to sleep right after I take that last miserable dose of Neupogen.

End of chemo...again

So I have been playing blog catch up today...This is my third and final post.

I finished chemo again, bonus round and all, last Thursday. Of course I am very excited and I had every intention of writing an amazing post last Thursday night, but I didn't.

Reasons:

3. Geoff was teaching and I was home alone with the kiddos
2. After the last time, I'm a little superstitious and terrified being "Yay! I'm done!" and the cancer gods seeing that as a challenge (again)
1. I have felt like crap!!!

So, more on that reason #1...Last Thursday when I was at chemo clinic, I actually requested of the PA's look at my throat to see if it there was any resemblance to strep. Both kiddos were sick and passed the crud onto me and I didn't want to take any chances. Then I went and had chemo which in case you don't know, does not make one feel better. THEN...on Friday I started what I hope is my last round of Neupogen (EVER!!!) and that only made me feel worse.

By Friday night I was writhing in bed and whimpering like a BIG wuss. I was laying on my heating pad and had already taken a nice long soak in the tub in epsom salts and a variety of essential oils (none of which I could smell). I took all the meds I could and Geoff packed "bed buddies" (basically cute fabric covered rice bags that are microwavable for use as heat packs) around me.

Since then I have had what I am considering to be horrible hot flashes but are more likely violent temp fluctuations. I don't really get chilled, but I do sweat and get drenched. It's disgusting! I also, have really disgusting drainage from my sinuses which leaves me with headaches and nausea.

I take meds for the headaches and nausea, but the meds don't make the rest of it all go away and they definitely don't fix the fatigue.

As I write this I feel like I'm being a big wuss. I promise, I'm still functional and doing what I can around here to help out, but I'm tired. Really tired.

I decided on Saturday that I needed to stay home from clinicals. I was supposed to do a 12 hour call shift and I realized I just didn't have it in me to do. Not to mention I'm sure no new mom/family wanted me anywhere near their new baby.

Then today I was supposed to be in clinic, but I wimped out again.

I spent a good amount of time talking with my clinical faculty about this yesterday. I also spent even more talking with my family. I feel bad. Clinicals are something that I am thankful for each day. I realize how lucky I am to have such a great clinical site. I am fortunate enough to have wonderful preceptors and by having "sick" days I feel like I am blowing all of that off.

It really stresses me out to think about. I don't want to give anyone the impression that I am not appreciative or that I can't keep up. Ok, so sometimes I can't keep up, but honestly, I had chemo, neupogen and some sort of cold/virus/sinus crap. It's reasonable to think that I might not be able to keep up with that, right?

It is really frustrating, but it is also very temporary.

Don't get me wrong, I haven't forgotten the end of chemo last time. I was all like "woo hoo!!! I'm done!!! Screw you cancer!!! Now I can get back to my regularly scheduled life!!!" Then I fell on my face (figuratively, of course).

I realize this time that just because I am actually done with chemo, doesn't mean I am "done" with chemo. It takes months to get it all out of my system. It took months to get it there and I need to let it do what it is supposed to be doing. I also need to remember that it is cumulative (for me anyway) and right about now is when it really kicks my butt.

All of that is hard though because chemo wasn't as horrible as I had anticipated this time. I thought I wasn't going to be able to function at all, and that hasn't been the case. Of course I think I've learned my lesson this time so I will just continue to take everything one day at a time.

For today, my priority is taking it easy. Obviously I blogged, and as soon as Ella goes to sleep I plan on napping. Tomorrow I'd like to do a little homework. Wednesday I plan to be back at clinical, but I'm guessing that will wipe me out again, so Thursday I have no goals. Um, ya...well, that's my version of taking it one day at a time...I guess it's more like 3 at a time...

2nd Birthday

Ella's second birthday was a big milestone for me. I've mentioned it before in the blog, but I'm ready to explain a little more thoroughly. When Ella was born I had what I consider to be the "perfect" birth. Ella was born at home in a birthing tub with wonderful midwives/women and Geoff present. I caught her myself. I was able to nurse her right away. Seriously...it was gorgeous.

Then I hemorrhaged. My placenta never detached and I needed to be emergently transferred to the hospital. Geoff and I left in an ambulance and I won't lie, I feared that I would never see my babies again. I knew what was happening and I was scared.

I remember being wheeled out of the house and wondering how I would ever be able to be a midwife and how I would ever be able to support other women through birth. I had just started midwifery school and I was scared that I had made a big mistake. I watched my vitals in the ambulance and fought to stay conscious. I remember the EMT's telling the driver to "DRIVE FASTER!"

It was the scariest experience of my life and I can honestly say at this point that I have been through some scary shit. Um, like, cancer...

My wonderful midwifery team brought Ella to us at the hospital and Geoff brought her to me in the recovery room, where I held her and nursed her again (in the meantime they took turns holding her skin to skin...I just have to mention that). I had a hard time dealing with all that happened in-between for the first year of Ella's life. It was hard for me to know that I missed that vital time with my infant. It was hard for me to know I missed her first car ride, or being weighed (this was a big deal), and so many other things...It was hard for me to know how close I came to dying. 

I would cry and hide anytime I saw an ambulance and I was terrified to go back to work because I knew eventually I was going to have to encounter EMT's bringing a patient in (fortunately the first time it wasn't my patient so I hid in the bathroom while I cried). I obviously had PTSD. I knew it and so did Geoff and we just worked through it as best as we could.

I found other mom's that had their own traumatic birth experiences and bonded with them. I found helping them healed me. I looked forward to and dreaded Ella's first birthday because I knew that as I honored her special day all my nightmares would once again be brought to the surface.

The nightmares were definitely brought to the surface, but I never expected it would get worse. Just days before her first birthday I was diagnosed with cancer. I had no idea that her first birthday would coincide with my first oncology appointment. I had no idea that I would spend her first precious birthday sobbing because I was afraid I wouldn't have a chance to be there for her 2nd, 6th, 12th, 16th, 18th, 21st, 31st (golden birthday), etc.

This is why #2 was such a big deal for me. I wanted a birthday for Ella that was really about Ella. I wanted a day that we could just celebrate the way you expect to celebrate your little girl's birthday. Everything about that day terrified me, but instead of wanting to hide I wanted to make it wonderful.

I did everything I could to make it the best 2 year old bday I could. Money is still tight so I couldn't go too nuts spoiling her and I don't think that was necessary anyway, but I did make sure we had special presents for her. We had a bday party for her and invited friends/family. It was everything I wanted it to be. We even had a bounce house (in all fairness, E had one for his 2nd bday-right before Ella was born). I did something my pride would normally never let me do...I called the hardware store (Asleson's True Value) and gave them my sob story and asked for a discount because I knew a bounce house wasn't really in our budget. They were amazing and made everything easy for us.

Here are some pictures of the birthday:

"birthday girl" and brother

blowing out candles

"cheese"

Cake everywhere

really everywhere!!!

bounce house craziness

the big boys

even Esse joined in the party fun

princess for a day

"a bag with my name and a tutu? I think I should wear it"

periodic table blocks, of course

Children's Museum-A Day in Pictures

Two weeks ago today I had a lot more energy and was feeling up to taking the kiddos to the Madison Children's Museum on my own. We went for the morning and Geoff actually came and met us for lunch. We had a great day and I thought it would be fun to share some of the many pics from the day... p.s. Let us know if you ever want to come with us or meet up there...it is definitely a favorite for all of us!