Birthday card

This past week at Gilda's we stumbled on the topic of leaving birthday cards, graduation cards, prom cards, etc. for your kids. One person actually called the notion of it all courageous, and frankly, I agree. I've pondered doing some variation for a long time, and I've even talked with Geoff about it, but his advice has always been "if you aren't comfortable with it, then don't do it." This seemed like good advice so I've always gone with it.

Part of the problem I have always had is when do you stop? 18? 21? 30? I know it's a personal question, but what if whatever age I choose isn't the right one for them and they go through another version of the loss of the mother again? Personally the number that always comes to mind is 60. That way they are at a point when they would already be getting adjusting to the idea of losing a parent, and they would have quite a collection of cards that they could reread. The downfall is this is a major undertaking when my kids are only 2 & 4 years old.

One thing I feel silly for never thinking of myself is the fact that I could live and be around to reread what I write to them over the years. Someone at Gilda's pointed this out and it seems so simple and obvious. I liked it.

Back in the day before I had cancer I used to watch a show on Showtime called "the Big C." It's about a middle aged woman, wth a husband, and teenage son who is diagnosed with terminal melanoma (skin cancer.) It takes place in Minneapolis and I loved seeing and hearing about some of my old favorite stomping grounds (I really miss that place!). In the first season one of the ways she deals with her diagnosis is by buying gifts for her son's future birthdays. She even gets him a cherry red convertible for his 16th birthday. She hides all the gifts in a storage locker, but he eventually stumbles across the key and gifts. He doesn't appreciate all the work and thoughtfulness of her gift and doesn't understand why he can't have the gifts now.

I know I have little people who are less likely to stumble across gifts, but I always have questions such as how do I know what's going to be appropriate for these little people in the future? If I make a DVD for them, are they going to have to resort to some archaic form of technology in 10 years to watch it? If I find a thoughtful and meaningful necklace to tuck away for Ella, what do I get E. How do I know what to write? Of course it should be from the heart, but if you only had one chance to write congrats on graduating high school or college would you know what to write?

All of it seems very daunting to me.

Then yesterday after my scan I decided to do a little Christmas shopping. I was in a line waiting to check out when I saw a card that reminded me of Ella. There was a flowery graphic of the silhouette of a little girl running with rain boots, a headband, and butterfly wings. The words on the outside of the card said "Nature never repeats herself, and the possibilities of one human soul will never be found in another." -Elizabeth Cady Stanton The inside reads "Celebrating the one and only you. Happy birthday." I loved it. Next thing I know I'd found a card I loved for E too and then a few more. Next thing I knew I had a small stash.

Then I finally got to the checkout and I found a couple more little pop-up cards that I loved. I decided that the hunt for and challenge of finding cards for the kids, Geoff, family, and even a few friends was appealing, so I bought them. I'll stash them in a box and write in them when I feel inspired. In the meantime I'll enjoy the challenge of finding and making the coolest cards to give for the next 50 some years and hope I get to be around to reflect on all the silly sentimental notes I write.

Today was a snow day so school and daycare were cancelled. This meant the kiddos were going to chemo with us. At first I was a little panicked because not only was I getting scan results today, but I was also doing my music video, and it was a long chemo day. It was going to be a lot for all of us. Fortunately though some amazing anonymous person sent us a package yesterday filled with things "for when your mom isn't dealing well." I keep a bag packed and stashed in case we I ever get sick and we need to go in suddenly, so I updated the bag with a few things from the package and added in some holiday Classic DVDs such as Charlie Brown Christmad, Frosty, Rudolph, etc. and away we went.

In addition to the really thoughtful "sick day package" I also received a package from a school friend yesterday with "Believe" socks, a "Believe" book full of beautiful affirmations/quotes, and a few other things (including an awesome car magnet!). I immediately read the book from cover to cover yesterday, but this morning I pulled it out and reread some of the affirmations and put on the socks. It felt like the timing on those packages had to do with fate. I can't tell you how much some socks helped to ease scan-xiety and help keep things in perspective.

Finally we headed out. We were fashionably late as usual which was frustrating because we trying to match our timing up with timing of multiple nurses and MDs for the video. When I finally got to my oncology/chemo clinic appointment we decided to forgo waiting for the MD to get my results right away and we headed back upstairs to the chemo area to start working on the video.

It was fun. I can't dance, but I gave it heart anyway. There was suddenly a lot of people who mean an awful lot to me there. We danced and giggled and hugged. Ella scowled at us and E waffled about whether he wanted to make a dork of himself with us. It was great!

Finally it was time for results so Geoff, the kids, one of my oncologists, and my lovely NP all shuffled into a little room to talk. The kids tried to be good, but we didn't really explain what was going on well to them and I was tired and not as patient as I would like to be so they chose that moment to start to fight and act out. Geoff tried to keep them occupied so I could at least discuss the results, but as usual our wonderful NP saved the day by taking the kiddos for a "walk." On this walk they found our favorite social worker who then ended up with the kids so our NP could rejoin the pow-wow.

So the results were mixed. Essentially this means that all the tumors we have seen before have greatly decreased in size/metabolic activity. Great right? I think so! The downfall is that there are a few new tumors we haven't seen before in my pelvis and one (?) in my right neck.

What does all this mean?

1. Best case scenario...my last scan was in August. This is more than three months ago (normal period for scans), and I delayed treatment for surf camp. During this time things may have been growing. New things, such as these new tumors. This would explain why we haven't seen them before. The down side of this theory is why haven't they responded as well as the other tumors.

2. The dark horse theory...it's highly unlikely, like less than 1%, but still possible...the chemo worked for some of the growths! but not the others, such as these new ones. Apparently it doesn't happen often, but it does happen.

3. Worst case scenario...I've hit my peak with this treatment and the cancer has become resistant. If we would have scanned a few weeks ago we would have seen even better results and now stuff is growing again. There were down sides to this theory too, but is can't remember them exactly.

Overall, the best indicators are my gut feeling and how I have felt. I can really waffle about things at times, like if you remember when I was trying to decide treatment regimens I had a really hard time deciding, but I immediately felt option number one is the right one here. I felt really crummy and "cancer symptomatic" around and after surf camp. I wanted to start chemo so the pain, crazy night sweats, and uncontrolled weight loss (I love losing weight any other way) would stop.

I asked if the nodule in my right neck is near my port because I can't feel an enlarged lymph node there, I never could, but I had cancer pain there since before my port was placed. I still have a little there but it is much less, so that made sense to me. Same with my pelvis. For me, number one makes the most sense. I'm considering #s 2 and 3 too, but I'm stuck on 1.

We talked about options. Everyone was in agreement that I should stay on one of the chemo meds, Avastin for the rest of the treatment plan. The other chemo med on the other hand, the oncologist wanted to discuss me dropping due to side effects. The neuropathy (numbness and tingling) in my feet is bad. According to my oncologist/NP it can be permanent and even lead to a wheelchair. I understand the risks, but personally living is more important to walking. I promised to let everyone know if it gets worse again, and Geoff threatened to tell on me if I don't.

The rest of the plan is that I will follow up with another scan in two months instead of three to reevaluate. This seems like a good idea to me. Actually it is exactly what I wanted.

I never thought the results would be an all clear, so I'm happy with the results of today's scan. It gives me hope and worst case scenario it gives me more time. In the meantime Geoff and I want to continue to clean up our diets, work in some time to exercise, take better care of ourselves, and most importantly get good sleep. Geoff needs to spend his time job hunting and sleeping so he can function better for all of us because he has too much on his shoulders already. I'll spend my time finishing up school and trying to figure out what to write on all these cards that I'll be hunting for and making. Hopefully I'll be around for decades to reread and reflect on all the silly things I wrote in them.

Big Day

So today was my scan. It went as well as scans go, but I know nothing about the results. Usually I get the results the same day, but it didn't work out this time unless I wanted to wait until next week for my scan and that didn't have appeal to me. Sooo, I'll find out in the morning.

It was the first time I've even driven myself to and from a scan, which was fine, but I did miss Geoff. It was a big day for us, because it was Geoff's last day at work. Just like my scan results, we don't know exactly what is next, but we will find out soon enough.

As always I'll keep you posted as we get answers...

Scan-xiety

A few weeks ago I took a class at Gilda's House on Scan-xiety...the anxiety one gets related to their next scan.

This may seem silly to someone who has never experienced scan-xiety, or had cancer, but talk to most anyone that has had cancer, and has to do routine scans, and they can usually relate. It's one of those reasons people go to Gilda's House. As I try to explain scan-xiety here I realize how silly it may seem to someone outside of the cancer world, yet if I talk about having an upcoming scan at Gilda's it is inevitable that others will ask "and how are you feeling about it?" or comment "I bet you can't wait to have it over with..."

It's hard because these scans are just scans. They don't actually change how I live today from how I live tomorrow (well, in general), but they hold a lot of power. Ok, actually, we give them a lot of power.

I wouldn't say I really learned much that was new in the scan-xiety class, but it was helpful in redirecting and refocusing my mind. It was a good reminder to live in the present moment and to remember that no matter what happens, I'm alive right now and that is worth being thankful for.

I'm not sure if it is the class or the fact that it's the holiday season and I'm so busy, but I have a scan on Thursday that I'm really not stressed about. I wouldn't say I'm looking forward to it, but I'm also not dreading it.

I guess a part of my lack of anxiety is the fact that I think I'm doing pretty well right now. I mean I feel really crummy from chemo symptoms still, and I really hate that, but as far as cancer I feel pretty well.

I usually try not to talk too much or too specifically about my "cancer symptoms" because I'm a little superstitious. Before my last scan I could feel enlarged lymph nodes in my neck. I was having horrible night sweats and I was loosing weight no matter what I ate. I had pain in my sides (where other lymph nodes are located) that felt like a baby alligator was chewing away, so I was popping pain pills on a schedule and it still didn't take all the pain away.

At the risk of being completely wrong, I think I may actually have a pretty good scan this week, but who knows. I'm fairly good at telling when it's really bad, but I can't say that I can predict it all. All I can say, is that right now my pain is mostly bone pain from chemo. My sweats are hot flashes. I can't feel any enlarged lymph nodes, and much to my dismay (and happiness) I'm gaining weight (which I'm not supposed to loose...talk about a double edged sword).

Personally, I'm hoping for a Christmas miracle.

To be completely honest though, I am scared. Last time I had a mid-chemo scan it was really good and then the chemo stopped working. That's one of my biggest fears right now. I'm terrified I'll have a good scan and then in a few months I'll have another horrible one...This is where scan-xiety comes from. The reality though is that I just have to keep reminding myself that I'm doing ok today.

I'm here today and it's looking good for tomorrow.

This is probably the most important reminder for myself today as we received news that one of our Gilda's friends passed away over the weekend. She was barely older than me and last time I saw her she looked really good. She is mother and a wife and I keep thinking about her family and what Christmas will be like for them.

Geoff actually got the news first and told me when I came home from work tonight. We both cried and hugged each other extra tight. He followed me around the house trying to dispel all the similarities I was quietly finding in my head. Honestly though, I'm not sure which of us was harder hit by the news. Geoff was friends with her husband and usually related to him better than anyone else at Gilda's.

I've had occasional thoughts before today about what would happen if something changed before Christmas for us, as in what if I took a turn for the worst. Usually I shut the thoughts down as quickly as they start because I just can't afford to think that way. I always tell myself I'm here now, enjoy it. So that's what we did...

We are blessed and received a huge package of Christmas presents for our kiddos today from strangers. We were overwhelmed by their thoughtfulness and generosity. We put some of the presents under the tree and um, hid some others...and then we took one for each of the kids and talked to them about how lucky we are and how giving others are, then we let them each have one early present.

Of course the kids thought they were the lucky ones, but really it was us. We were in a position to really appreciate all the magic of Christmas at that moment. This way no matter what happens I got to have a little bit of Christmas with the kiddos already and you can bet that I'll be thinking about those memories while I lay in that noisy scanner on Thursday. Take that scan-xiety!

Worst mom ever

It's been awhile, again, since I've written.

I think about it everyday, but often I don't have the time to write what I want to say.

Not to mention that even though I try to be as open as possible so I can share the "whole cancer experience" there are many things that happen in our lives that it isn't my place to share. Lately, there has been a lot of ups and downs, but none of them are mine to share so it's been harder to know what to write about.

I've been busy trying to juggle our already too busy lives with all the holidays have to offer. Last year I had time off after my surgery to relax and really enjoy the holidays and this year it seems to be the polar opposite...Everything is going way too fast.

I really wish I could just hit pause for a night or two.

In addition to everything else I'm under pressure with school work. I've finished all my big classes, but I still have clinical papers to write. Speaking of which, I have a big one due by the end of this week, or else! I have a bunch of little papers for school to do too and I haven't even given all my preceptors my schedule for December and it's December 10th.

The biggest problem with doing my schedule right now is that I feel crummy. I feel like I'm walking a fine line and I'm trying so hard to protect my immune system. I'm tired and I have a sore throat and cough that just don't seem to be going away. Yesterday I slept the entire day. Yes, the ENTIRE day and I still feel crummy. One of my biggest fears is getting pneumonia.

I've been a major sissy and tried to stay inside as much as possible, but seriously it's negative temperatures with the wind chill right now so I think it's pretty much justified.

On Sunday, Geoff and I had the opportunity to go to a Packer game for free with my Dad (my mom was staying home to babysit). We were both really excited to go, except for the cold. I haven't gone in a long time and Geoff hasn't ever gone so I was really excited to go with him...at the same time I kept thinking about how miserable it was going to make me feel for days afterward. In the end, I bailed at the last minute. I realized it was much more important to protect myself so I could go to many more games in the future, than to risk everything to go to one game.

I stayed at my parent's house with my mom and the kiddos and actually, we went out Christmas shopping (which is really pointless when you have two little kiddos with you). All in all though it was a good day for everyone. Sunday night we were reluctantly packing up to leave my parent's house when I accidentally closed Ella's fingers in the screen door.

At first I didn't realize it, then I saw where she was standing and realized what I must have done. Then I saw the look on her face...that moment before the blood-curling scream comes. I was already opening the door and trying to rescue her, but then the scream came and I completely lost it. I don't care that I'm a nurse. None of what I've seen professionally (btw, I used to be a trauma nurse) prepared me for my own baby being hurt and bleeding...I know, I know...We've all had our fingers smashed in the door at some point or another, but it doesn't matter when you have vowed to do everything you can to protect your babies and you are the one that hurts them.

So, I completely lost it.

In the end Ella lost a good chunk of skin to her right middle finger. She also has a nice sized hematoma (bruise) under the fingernail (she will most likely loose her fingernail). It bled like crazy and she screamed for a good half hour straight. There was discussion, no make that, frantic yelling about whether she needed an ED visit, but in the end we decided to wait until we were home.

The next day I took her to the pediatrician's office. She was able to bend it and straighten it so it seemed like it was going to be nothing, but as luck would have it, the xrays found that she has a "tuft fracture." Now she is wearing a splint and will need to follow up with pediatric ortho and it's my fault.

I feel terrible. Worse yet though was what was yet to come...Daily dressing changes with a fearful, irrational two year old. 

As I tried to reason with her and was barraged by million "whys" from her and E. I finally jokingly said something to the effect of "come on Ella. We need to change your dressing so your finger will get better and not fall off."

I should have known better.

This is what followed...

E: "ya, Ella. (pause). If your finger falls off we will have to get a new baby and since Mommy is out of babies, then we will have to find some other parents that have a Mommy with a baby in her tummy and pay to get that baby instead."

um, what? Pretty sure I stopped breathing at that point and didn't know whether to laugh or cry. What have I done? or not done? There are so many things wrong with that statement...like disposing of Ella or buying a new baby or...wow!

On the bright side, I realized that closing Ella's fingers in the door wasn't actually what made me the worst mom ever...

Jumbalaya

I think this is the longest I have ever gone between blog posts. Trust me, it is not intentional...I've just been really busy and shall I say, conflicted...

The way it usually works is I have a lot and my mind and it's compartmentalized and easy to break into separate blog posts. That hasn't been the case for me these past few weeks.

Here are some of the topics that have been running through my head...chemo symptoms, fundraisers, school, finances, cars, Ray, Geoff, kids, pets, my ankle, breaks, chemo rides, the medical assistant from today, Holiday pictures, oh and my music video.

chemo symptoms-I've talked about these before...nose bleeds, neuropathy in my feet, digestive issues, fatigue...I'm noticing more and more that I just don't have any stamina anymore. It frustrates me and of course, it frustrates me when people either don't notice at all or comment all the time on it. This is not really fair of me, I know. I can't help it. I desire a certain level of acknowledgement, but too little or too much and I'm done with the conversation. Probably this is because I know that I am doing everything I can and I want acknowledgement for that and I don't need anyone else to draw attention to my weak points (this is something that I am also very good at doing myself).

fundraisers-I should probably talk finances first, but this came to me first so this is being discussed first. Currently, I have multiple fundraisers. I have the rumble-round-2 fundraiser (started by a Madison friend-also the creator of the cancer cell sale, our first ever fundraiser which saved our butts and made us laugh), today I have the zumba fundraiser (started by a friend that Geoff went to undergrad with-also did a Harvest fundraiser with her family where she baked and delivered baked goods to anyone in the Twin Cities...it was pretty awesome), ginny-and-geoff-s-mini-madison-vacation fundraiser (started by a fellow home birther that I've never been fortunate enough to meet in person-she lives outside the US and is still organizing all of this), the Circling Up Mandala fundraiser (started by an artist I have never been fortunate enough to meet after my amazing classmates commissioned an original piece of art for me), and for a few more hours the yoga fundraiser.

I don't even know what to say about all of this. Honestly, it's the probably the biggest reason I haven't blogged because I wish I had the grace to express how grateful and appreciative I am, without sounding like I am boastful. There is a part of me that worries that we don't deserve it all or if I talk about it, all of it will all go away, or people won't donate. We have relied so much on these fundraisers that the idea of them all going away scares me, so I convince myself to be quiet about it when all I really want to do is scream THANK YOU!!!! Thank you to all that have created these and Thank you to all that have participated/given/shared with friends/etc.!!! I wish I could do more to tell all of you how much of a difference it has made in our lives. THANK YOU!!!!

school-I'm finished with all my didactic (non-clinical) coursework. It is time to register for the next term and I have nothing left to register for. I have less than 300 hours of my required 675 hours to go. I have been plugging away on my big clinical assignments. Out of the four, I finished one this week. I have another that I did a significant portion on this week and I have to monitor a forum post for the next few weeks to successfully complete. I have a long journal/case study to write, and in December I have a gynecology assignment to do. Other than that I have some short clinical papers that I'm working on. I have 12 more births to go. I need some new OB appointments, some 2-8 week postpartums, and a some gynecology appointments and I'll be ready to take the big tests. The first test I will take is practice comps, which sets me up to take comps, the test that I take to qualify for my master's degree. After I complete practice comps, and comps, I take the national board exam to certify that I actually have the knowledge to be a nurse midwife. I'm getting close to the end, but right now I'm just taking it one step at a time. I can't think about the tests yet...in a few more weeks. My goal is to have all of my assignments/paperwork done by the end of this term so I can just focus on clinicals and practice comps. I'll keep you up to date on how all that goes...

finances-Things are so much better. Thanks to the fundraisers (see above) we can pay our main bills and we have a bit of a cushion. I completed my paperwork for Social Security Disability (SSD) this week and I've already received a phone call today telling me that because of my diagnosis my paperwork will be expedited. I still have guilt issues about SSD, but I'm working through them.

cars-This the financial part that sucks. I took care of the tabs for our cars and the break light (thank you!!! you know who you are), and immediately one of the headlights went out (thank you!!! you know who you are too-well, you bought a break light and suggested we use it for the headlight when you realized we already got the break light and you helped fix the break light)...Now I'm trying to budget in breaks for my car and make sure we get the tires replaced on Geoff's car, in addition to lessor things like a rear windshield wiper for my car, and now a headlight for his car. All of them are important, but expensive and time-consuming which is appropriate because time and money are the two commodities that seem to be the hardest to control through all of this. Fortunately, we were given information for a local charity that does repairs for wholesale for people in situations like ours, so I need to call and see if we qualify and hopefully that will help some.

Ray-I didn't go to Gilda's house this past Tuesday because I was busy with clinical work for school, so I haven't seen Ray since right after I started the fundraiser for him and his wife (Ray's fundraiser). He wrote a caring bridge entry entitled an angel about me and it made me cry. I'm so very appreciative and proud of all my friends and family that have helped him and his family. I wish I could do more, but I'm glad we got the ball rolling and hopefully all will be OK for Ray.

Geoff-Geoff is my main concern right now. He is having a hard time. It's hard to be the spouse in a situation such as ours. So much of the responsibility is on his shoulders and there really isn't anything that he gets to give up, yet the focus is usually on me. All the time that he has missed from work has taken it's toll and he's feeling really behind and frustrated. He's overtired and under-rested and on the cusp of getting sick. We both recognize all this and have been pushing to protect his time and his sleep, but there never seems to be enough hours in the day and there always seems to be more for him to do. (though I did take care of all the front yard work yesterday-thanks to my parents for lending their gas blower to us...I still had to rake too...) I really wish I had a magic wand so I could just make it all better for him...He's the best husband and dad. He loves all of us so much and would do anything for us...

The kids-The kids are doing pretty well, well mostly...Ella is thriving in her daycare. She's doing really well with potty training and she has something to say about EVERYTHING! She is really funny and sassy...Oh and she had pink eye last week. Gross! E was lucky to dodge the pink eye, but he has been battling a lingering cough. Other than that, he is doing really well and seems to love 4K, though we were recently informed that he doesn't have a best friend other than Ella, and he would really like one. I'm excited for the holiday season with the two of them again this year. E asks about Santa on a daily basis and is really excited for our house elf, Alfred to return in December.

My ankle (and pink-eye)-Sooo....this should probably be my primary concern right now, but of course it is buried down here...A few weeks ago I tripped in the garage and twisted my ankle, then Wednesday I was standing up and leaning across our bed when I heard a tearing noise come from my ankle and felt severe pain. At first it was like a "snake bite" (something we used to do as kids to each others arms where we would use our hands to painfully twist the skin in opposite directions...don't ask why we did this because it seems like the most idiotic idea to me now), then it was a shooting pain. It immediately swelled up so I look like I have elephantiasis with some bruising. Geoff and my niece teased me that they thought it was broken and I should go to the ER. I considered it, but I'm stubborn and decided to call my NP instead and hold off until I was at the hospital today for chemo. I forgot that I actually had an oncology appointment scheduled for today or I probably would have just skipped the phone call all together. Sooooo...this is where I mention that I woke up today with pink eye. Damnit!!! but I already had drops left over from Ella. Then I went to my appointment...I had films of my ankle done and sure enough I have an avulsion fracture. I'll see ortho on Monday and I'll know more then, but they have already thrown out the idea of casting it and I'm cringing at the idea. I've considered all the things I won't be able to do with a stinking cast so I'm trying to balance being good and resting and taking baths, and um, riding my horse...We'll see how it goes...maybe they meant walking cast :)

Breaks-So as mentioned above someone did a fundraiser just for a mini Madison vacation for Geoff and I. Can I tell you how excited we are? Personally, I would be OK with sleeping the whole time and I think Geoff would be too, but it sounds like there might be more involved than that and that is exciting too! Then yesterday we got a gift card from a "Secret Santa" for the Great Wolf Lodge in WI Dells, so now we get a mini vacation with our kids too!!! I pretty much feel like royalty. I think we are going to wait until the new year to go to the Great Wolf Lodge and hopefully my parents are going to come along with us so we have extra adults so we can ride the water slides together too. Right now these get-aways are what are holding me together.

Chemo rides-With Geoff needing to minimize how much time he is away from work, I might need to arrange for rides to/from chemo. I'm not excited about this because I hate burdening anyone else. I know there are charities that do this, so I may need to look into that too, but argh! I was really spoiled. We'll see how it goes. Right now he is going in earlier and I'm meeting him part way and then we are leaving his car in a safe spot while he takes mine so he can pick me up and drive me home. Then we go back and get his when the benadryl has worn off enough that I can drive...We'll see if this stupid ankle thing messes any of this up.

The medical assistant from today-Today's appointment was frustrating because the medical assistant (MA) and I got off on the wrong foot (maybe it was my bad ankle?...that was a joke). She isn't usually in the gyn oncology dept. and doesn't know me and my major aversion to "the chair." I basically refuse to sit in the gyn chair to have my vitals taken and I know that frustrates some of the staff. In my defense they use portable vital carts that allow them to take vitals anywhere and I have rights as a patient. I don't like the gyn chairs. I allow everyone to think that it's about pap smears and all that stuff, but really what it is about is it's where I was sitting when I first had someone tell me face to face that I have cancer. It's where I had to hear it for the first time and where I had to deal with for the first time in front of what were at the time strangers. There isn't a lot in my life that can compete with the pain of that situation and I still relieve it a little every time I have to sit in one of those damn chairs. I also have to admit it's a power struggle. I am prideful and in control of myself and when I sit in those chairs I feel vulnerable and weak. I know the medical assistant doesn't know that when she tells me to sit in the chair, or tells me she doesn't have time to argue with me, or the doctor is waiting and doesn't have all day for me, but I have the right as a patient and a human being to say actually I prefer to sit over there.

Today wasn't the first time this happened, but it was the first time it continued. Then there was an argument that never needed to happen over blood pressure cuff. I stopped talking and she continued saying snarky comments to me until I said something along the lines of this needs to stop. I asked if I could take my own temperature to help and she snapped no, I'll get your temperature.

I'm including this in here because it is on my mind and I need to vent. I'm not doing this to humiliate her or even to get sympathy. I'm including this because there are so many people in my life that have health care related careers or because everyone is a patient at some point. Regardless of what side you are on, provider or patient, remember that patient is a human being and has a right to his/her feelings. He/she isn't trying to make your job more difficult. I was actually trying to make it easier. I know that my blood pressure is find if I avoid the chair, but it goes up in the chair. As a nurse, I would never ask someone to sit somewhere that is going to make them uncomfortable in anyway and I have the same expectation of those caring for me. I think it's a pretty simple request. By protecting my needs I am ensuring she won't have to take my blood pressure again. Then we argued about the cuff because they always use a large cuff on me. I have lunch lady arms and the regular cuffs have a tendency to pop off of me. I've never had anyone argue with me before but again, why would she want to have to take my blood pressure more times? She already stated she was under a time crunch.

When she left the room, I cried. I felt like my space had been violated. I already don't appreciate that at 36 years old I am terminal gyn cancer patient. I love my providers and I feel like those appointment rooms are a sacred space to me where all my fears and weaknesses are addressed. I have laughed and cried in those rooms more than anywhere else I can think of and I more than anyone want to keep things as simple as possible. I left feeling hurt and mad. I addressed the issue with my NP, but I felt like a little kid tattle-telling and that made me uncomfortable too. I thought about writing to patient relations, but ultimately I don't want the MA to get in trouble, I just want her to have some extra compassion.

Holiday pictures-I just have to include this because it is on my mind. We have been fortunate enough to have been gifted credit with a few photographers including our beloved, Beth Skogen. I need to write to Beth and set up a time for photos, but this is ridiculous, I'm waiting on shoes for Ella that are back-ordered in addition to hair cuts. I just want to get it done and yet I'm not sure we can ever top our photos from last year. Beth did such an amazing job...I guess we'll just have to give it a try...

Music video-I decided to make my own cancer music video. I feel like I'm essentially copying Stronger cancer video, but I love this video, and I decided I wanted to make my own. I want to do something else to make chemo fun. I'm not sure I want to discuss all the details yet, but I'm going to through out there that if anyone is an experienced videographer that may be willing to volunteer some time and/or anyone has experience editing I would love some extra help. We are looking to do this around noon on December 20th. I have chemo that day and currently Geoff is slated to do all the technical stuff, but it would be nice if he could be in the video with us. I'm also trying to figure out if we can sneak E and Ella into the video dressed up as tigers (that's your hint to my not super secret song)....Anyway, any and all help or suggestions is appreciated because I'd really like to do all I can to make it both fun and amazing...I'm hoping to have it done (this is probably too ambitious) by Christmas Day or New Years at the latest so be on the watch

Above all I have faith that it will all be OK. I continue to pray each day and I know that I/we are in the prayers of so many others and I continue to believe in the power of prayer and miracles. It will all be OK.

Help 2.0

Writing for help for myself and my family was one of the hardest things I have ever had to do, and yet one of the most rewarding. Friends, loved ones, strangers have been amazing to us beyond our wildest dreams. I was able to pay the mortgage for November on time and at the beginning of the month and I have to admit, I felt spoiled. 

I swore I would never ask for help again and I meant it...for me anyway. This time I am paying it forward and I am asking for help for someone else. A friend, a fellow cancer warrior, Ray and his wife, Bonnie.

I met Ray this fall at Gilda's Club. His face was ghostly white and he was extremely weak. The nurse in me did not like what I saw. 

I had a lot to learn about other cancers and stem cell transplants. Ray had a stem cell transplant on July 3rd (see his story below). He was extremely frustrated by how tired he was and everyone that had experienced stem cell transplants kept telling him "100 days," "it takes until at least 100 days" "100 days is the turning point."

I was curious. 

Outside of Gilda's, I had never known anyone who had undergone a stem cell transplant before, and I knew nothing about this "100 days." I watched and waited. Week by week Ray crept towards his "100 days" which he reached mid October. The transformation was amazing! The weak, pale Ray has been replaced by someone with color. He no longer looks like he needs someone walking next to him in case he gets wobbly. He looks stronger. To me it was an amazing transformation, but of course to him it is still a battle.

He isn't as strong as he was before, and he definitely doesn't have the endurance as before. He's at the turning point in his recovery where he is feeling well enough to get through the day without sleeping 18+ hours, but instead of being able to revel in that victory he needs to start planning his return to work.

Ray has been away from work and without income for much longer than he would have ever anticipated. The financial drain has been devastating. At a time when he should be getting ready for his glory years and building a nice little cushion, cancer has taken all of that and then some away.

We have commiserated about the pain and embarrassment of the devastating financial blows of cancer. I have stressed and stayed up at night trying to think of how to help Ray. So many people have helped us and set up fundraisers for us. People have sent us cards, gift cards, checks, and even cash. It has not only saved us from not being able to pay our bills (particularly our mortgage), it has reduced our stress 1000 fold. I want to do the same for Ray. 

Ray and Bonnie have had no fundraisers. They have had enough financial support from family to get through the month of November and then they don't know what they are going to do. This is a constant stresser for them and it should not have to be. No one should be going through what they are going through, esp. before the holidays. 

Help me give them the holidays they deserve (Ray was in the hospital through Thanksgiving last year and really deserves it). Give enough money to help buy a turkey, a tree, a gift, or to pay a bill. Give $5 if that is all you can do. As someone who as been in Ray's position I can honestly say that any amount, ANY is appreciated, and it does make a difference.

Just please help Share the care

Rays story (abbreviated) as told by Ray...

Between 1986 and 1994 I had three isolated plasmacytoma tumors, which is apparently very rare. Usually the disease metastasizes, at which time it is called Multiple Myeloma.  Plasmacytoma tumors are very responsive to radiation, so with each one I had a course of radiotherapy, which shrunk the tumors, and life went on.  After a number of years I thought that my cancer was all in the past.

But what I learned later is that radiation therapy can cause other cancers, which I should have known, but never really thought about.  Fast forward to 2012.  At that time I was seeing my primary care doctor regularly to follow high blood pressure and diabetes, with frequent blood tests.  There was something in my results he didn’t like or understand, as my blood counts seemed to be consistently a little low and getting lower each time.  So he sent me to a hematologist at UW for a closer look.  

It was April 2012 when I first met with Dr Longo, my hematologist. He immediately recommended a bone marrow biopsy (I had already had a few of those with the plasmacytoma tumors), which showed some abnormalities.  The diagnosis was MyeloDysplastic Syndromes (MDS), which is a whole group of disorders in the marrow, and which usually evolves into something more serious, usually leukemia.  There was nothing to be done immediately, but he wanted me to come back every six months for a repeat bone marrow biopsy, as he assured me that this would surely change at some point in the future.

So I was back in October 2012, and this time the diagnosis was Acute Myeloid Leukemia (AML). He wanted to admit me to the hospital immediately to begin chemotherapy. That was on Thursday, October 25th, but we talked him into taking the weekend to get some things in order before admission. So I was admitted on Monday, October 29^th, and expected to start chemo immediately. But there was a stage 3 clinical trial going on where I could get a different chemo drug, called Clofarabine.  (Actually not a new drug, but a new application for it.)  We decided to give it a go, and in the randomization I was selected for the new drug, a very lucky selection in my opinion.

So I started chemo on Tuesday, October 30^th.  The drug is administered for one hour each day for 5 days.  (By comparison the standard treatment is administered over 14 days, 24 hours each day.)  It all went very well, with essentially no side effects other than headaches.  Then I got a fever, which kept me in the hospital an extra 10 days, until the 14^th of November.  I had to return the following Tuesday, two days before Thanksgiving, for the second round of chemo.  These 2 rounds are called “induction”, and are designed to put the cancer into remission, which they did.  I returned home the following Saturday, the 24^th, to recuperate.

Two more rounds of chemo, in early February and early May, these are called “consolidation” treatments.  They reinforce the remission, and prepare the marrow for the transplant.  During these rounds I was still working.  I would go to the hospital in the morning for the chemo, then off to work for the rest of the day.

All this time they were looking for a donor for a stem cell transplant.  Neither of my siblings were a match, so they turned to the international registry of willing donors.  They match on 8 markers, and always try to find a full match.  But the best match they could find was a 7 of 8 donor from Germany.  The transplant was set for late April, but then this donor developed a medical problem, which was all the detail we could get.  That was apparently resolved, but he was unavailable in June, so the transplant was eventually rescheduled for July 3^rd.

So I was admitted on June 27 to start the “conditioning” chemo for 4 days, then 2 days of rest before receiving the transplant on Wednesday, July 3^rd.  There were very few side effects from the chemo again, I really got off pretty easy

It was July 23^rd before I was released from the hospital.  By that time I had started to grow new blood cells from the donor stem cells, and everything was looking very good.  I was tired – that doesn’t really describe the fatigue that comes from this procedure.  But all in all I felt pretty good.

In the months since then I’ve just been moving along the road to recovery.  There have been numerous symptoms, from the fatigue and nausea to a little bit of rash, to depression, especially as I ponder my return to the work force and a “normal” life.  There’s also been the worry over our financial situation.  I had expected to be back at work by now, but I just don’t have the energy to seriously consider that.  I have missed nearly six full months of work so far – November and December of 2012, plus July through October of this year.  Since I work as a consultant, and have no disability insurance, that’s also six full months without any income, and we were not prepared for that.

You can read more of Ray's words at his caring bridge site: rayjacksonmadison

Also, I plan to take photos of Ray and Bonnie and hopefully even talk them into a video this Tuesday at Gilda's. I'll post those as soon as I get them.

Finally, please help. They are wonderful people and you have no idea how much a little bit of your money adds up to be a lot of help for them. If all my Facebook friends or the people reading this blog gave $10.00 then they would have a few thousand to help them through this difficult time. I am literally begging you, another thing I will never do again. I thank you in advance.

Dirty Little Secrets

As I go into a do or die weekend where I have two papers to write by Monday so I don't fail out of school, I realized I have had a tentative blog post floating through my head for days. It isn't an easy one to write, so I've been procrastinating on it (hmmm, seems to be a theme with me...). I'm not even sure where to begin or how it is going to shape up. I just know it's time for me to share. Some of what I'm about to share is interesting, some of it may be tmi, some of it may seem obvious to everyone, but me, but I feel this post is important for sharing part of my experience.

Today I met with our new advocate from the Center for Patient Partnerships (refer to the Resources post for more information). She is actually the third advocate we have had, but the first one I have met in person and the first one I have ever felt a connection to. She gets me. She understands our needs and wants to help. I'm excited.

I met with her after labs, before chemo. We talked for about an hour and a half and yet it still seemed like we didn't cover everything. We talked about disability, we talked about wills, we talked about counseling, we talked about caregiver strain and support for Geoff, we talked about sleep, we talked about the kids, we talked about Gilda's Club, and so much more. For me it was a really good experience. I walked away feeling like I don't have to take care of everything anymore. Geoff wasn't with us because today he needed to be at work (this is only the 2nd time he has missed chemo EVER), though he did come in to meet our advocate.

We spent a lot of time talking about how worried I am about Geoff. He is exhausted. I think others see he is tired, but they don't understand his life. How could they? Everyone always focuses on how good I look or seem to be doing and they don't realize how hard this is on Geoff. In fact, this week at Gilda's my wellness group was actually talking about how sometimes (a lot of times) cancer is harder for the support person than it is for the person with cancer. I think this is definitely true for Geoff.

There are so many things he does during the day to make my day easier. It starts with getting up. He gets up 15-20 minutes before me on a good day so he can give me nausea and pain meds and I can snooze while they start to take effect. Then we both do a few chores and gets the kids ready for school/daycare together. If it's a bad day almost all of it gets dumped on Geoff until those meds really kick in or I pull myself together. This continues all throughout the day.

Currently its 11pm and Geoff is out getting apple juice because he teaches in the morning and we were low. The kids will freak out if they don't get their juice, but the real deciding factor was me. I want apple juice, kale, and parsley juiced before bed so even though he is completely exhausted, off he went. Trust me I'm not proud of this, and I very much appreciate it. I don't know what I would do without him, literally. (update: and he came home with flowers)

Another example of how wonderful he is was Wednesday night. Wednesdays are supposed to be my relaxing day, but as it turned out I had a few home visits to do for clinicals. I was gone most of the afternoon and evening and I was having problems with my cell phone. I stopped at the Verizon store to fix the phone and didn't get home until nearly 8 pm. Before I got home I got called out for a birth so I had enough time to stop at home and change into scrubs, kiss the kiddos and Geoff, and run off again.

Halloween is my favorite holiday and I was crushed because I didn't have a chance to carve pumpkins with the kids (things like this are especially difficult when you are told you might not have another Halloween). I hadn't gotten decorations up like I usually do and then pumpkins...it was enough to make me cry, but never fear, Geoff saved the day! I came home and all the pumpkins were gutted and ready to go, so I took a couple of minutes and carved one pumpkin. While I got changed Geoff carved another to E's request and all was well.

Again, I don't know what I would do without him.

So back to the advocate. We talked a lot about Geoff. We talked about how he doesn't get free time or downtime because he never knows how I'm going to feel. We talked about how tired he is. I learned about caregiver strain in nursing school and Geoff is the perfect picture of it in my eyes, but no one else seems to see it because they don't see him needing to "take care" of me. It gives me all new respect for those people who truly have to care for a loved one.

Our advocate called me out on dirty little secret #1: "I secretly pride myself on being a good actress." No one wants to hear they look like crap. Occasionally I get the "you look tired" or "you are pale," but mostly I hear "wow, you look good." It used to be frustrating when I still had long hair because people assumed I was fine, or my treatments were easy and I wanted some credit for all the crap I was going through (radiation, chemo, internal radiation, surgery...seriously each of these on their own was crap!!!). At the same time, I do everything I can to try to portray that my hair cut is just me being funky. It's not that I mind people knowing...if I did I would wear a wig and I wouldn't have this blog. At the same time it's almost a challenge or a game to me. I can know I feel like crap and Geoff can know it's a horrible day, but I don't want that to show to everyone else.

Dirty little secret #2...What is a bad day? Well, funny you should ask. First of all my feet don't work. I know that's an odd statement, but one of the chemo's I am on currently gives me neuropathy which essentially means that my feet feel like they are asleep most of the time. They are numb and tingly and generally frustrating. I never realized how much this would affect my balance, but it does. I fell in the garage on Monday and turned my ankle and that hasn't helped matters. In addition to my feet, my other chemo gives me bloody noses...daily. I wake up and almost always get a bloody nose at some point. They are quick to resolve and no big deal, but they are annoying none the less. I just want to blow my nose like a normal person, is that so much to ask?...Because of these bloody noses I seem to have more snot and need to blow my nose more so if I'm around others I get really self-conscious about the whole ordeal.

Next up for symptoms are fatigue and bone pain. Fatigue is constant and I'm used to it. Usually I can kind of pace myself, but not always. Births in the middle of the night or that last for long times are particularly difficult for me right now. This is frustrating to me because I am just a lowly student and I fear I'm giving off the "I don't take this seriously enough" vibe to my preceptors and clients. It's a hard position to be in, but hopefully the fact that I recognize it and try to be proactive about it helps. Bone pain is a whole different issue. Bone pain is one of those things that sneaks in slowly and you don't know it's there until you are ready to start writhing. In fact, usually I know it's there because I can tell that I'm really crabby and have a short fuse. Then I stop and think, why am I being such a b*$%h and it's like "oh ya, you haven't taken any pain meds since you got up." When I started this chemo I was really good about scheduling pain meds every 4-6 hours while I was awake around my chemo schedule, but I'm stubborn and I hate to take meds, so I keep finding that I'm forgetting to take my meds.

Ok, this next one is where it begins to get graphic...diarrhea. I'm not talking about any sort of run of the mill diarrhea either. This is the kind of diarrhea that fools you into thinking you have gas and then you shart. I'm no idiot and not willing to chance it anymore, so I do take anti-diarrhea medication on a schedule depending on the day of the week. I can honestly say I had worse diarrhea when I was on radiation and I feared I would never be able to leave the house again, so I'm appreciative that this is better, but I won't lie, this does leave me second guessing whether I want to leave the house many days. This is the symptom that when people ask me about my symptoms I say nonchalantly "oh ya, chemo gives me some GI upset, " when what I really mean is chemo f'n blows up my stomach and makes me think I am going to die. Some days I take anti-nausea meds around the clock (note that I said the plural form of meds), in addition to anti-diarrheals, and anti-gas meds. There are days when it is so bad that I have gas that would kill you, burps that would kill you, and I'm running for the toilet frequently, but when faced with the idea of it is this or you die, you suddenly find that this is worth it.

Dirty little secret #3...breast milk. Many of you know that I was diagnosed just before Ella's first birthday. The single most painful thing I had to do was give up breastfeeding for chemo. I refused to stop right up until the morning of my first dose. Then I pumped around the clock for another 4-6 months with the hope that I would be able to resume breastfeeding. I had my milk tested and I tried to resume breast-feeding but Ella had too many mixed signals by that point and didn't understand. This topic alone consumed me my whole first round of chemo. I gave up something I believe strongly in and an intimacy that I really treasured with my daughter. Well, tonight I found a stash of pre-chemo breastmilk. I want to sneak it into Ella's milk and know that I'm still giving her some antibodies, but (I know people are going to judge this and/or be grossed out by this but remember you have no idea what you would do to live) I've read about people who actually pay for breast-milk to drink during chemo. They feel the antibodies are helpful and that it helps the immune system for those that are immune-suppresed. On that note, I've decided to thaw some of the breast milk for myself. I've read that I should ideally be drinking the milk of at least 3 mothers, but I figure this is a start, why not?

Dirty little secret #4...I've learned to love cancer. I did NOT say I've learned to love having cancer!!! but I have learned to appreciate it. It really has made me a better person, a better friend, a better wife, a better mom, etc. This doesn't always come across right now because I'm tired and pushed to my threshold, but I know it's there. I've talked with the cancer and thanked it and told it how much I appreciate all the gifts it has given me, but that I'm ready to be done now. I'm ready to take it from here. I know I am loved. I am overwhelmed by the amount of people that have helped us and my faith in humanity is restored. I literally take time to stop and smell the roses and my priorities have changed. Sure I may have learned these things without cancer, but cancer expedited it, and has helped me feel a sense of enlightenment. Thank you cancer for that. I love you and I appreciate you. Now please go away.

Sad

I was supposed to graduate today.

Last November when I had a week to decide on a hysterectomy during the hardest term of college in my life I knew that plan was in serious jeopardy. I ended up having to take the rest of the term off and repeat the classes, which meant it wasn't going to be possible. I was split from my study buddy who I did everything with since we were forced together on one of our first group projects (there were many) of our program.

Being split up and being the one left behind was hard. Being the one not at graduation was harder. Next year will be great! I have other friends that will be there and that will be wonderful, but I'm still bummed.

Don't get me wrong I'm so proud of all my friends who graduated with their CNM (certified nurse midwife) and FNP (family nurse practitioner) degrees today. I guess I'm just having a little pity party because I so wanted to be with them so badly.

Our school is based out a tiny little town in the south eastern corner of Kentucky. It is built into a mountainside and is the center of an amazing and rich history. There is something magical about Hyden, KY. I can't explain it and honestly, if I hadn't been there myself I wouldn't believe anyone else, but it's true. There is something healing about it for me and I just wish I was there "circling up" (a tradition with my school) with my friends, well, family actually.

I guess I should tell you a little about the history of my beloved Frontier Nursing University.

 

It all began with a woman named Mary Breckinridge who was born into a wealthy family. After marriage and the loss of her two beloved children and finally a divorce, she decided to travel to England to train to be a nurse midwife. After her training she moved back to Appalachia and used her knowledge to start the Frontier Nursing Service.

This was a group of midwives that would literally go out on horseback to serve the poor and under-served women and families of Appalachia. These women had some of the poorest perinatal statistics in the US and the work of the Mary Breckinridge and the Frontier Nursing Service changed everything.

An article about the Frontier Nursing Service in the June 14, 1937 issue of LIFE magazine (I have my own copy if you ever want to read it)

Letters to Mary Breckinridge from Queen Elizabeth the 2nd

They kept impeccable records and statistics. As I mentioned before they served the women and families and began the concept of family nurse practitioners. They would bring vaccines for the entire family with the recognition that if they really wanted to help moms and babes they needed to treat the entire family.

The Frontier Nursing Service spawned the Frontier Graduate School which 30 years later became Frontier School of Midwifery and Family Nursing and sometime in the past 2 years while I was a student eventually became Frontier Nursing University.

The program like many nurse-midwifery programs these days is a distance taught program. We are required to go to an orientation session before starting classes called "Frontier Bound" and another before starting our clinical orientation called "Clinical Bound." Frontier Bound is essentially a 3 day orientation and bonding session and Clinical Bound is a week-long intensive do or die learning session with a lot of blood, sweat, and tears and bonding. Some of the people that I went to Frontier Bound with I also went to Clinical Bound with, but honestly I have met a lot of Frontier sisters (and a few brothers too...but not midwives) through my journey and I have made innumerable friends.

I can't explain the bond I have with these friends. Some of them are as close to me as my best friends that I have had for years. I can talk about anything with them and talk about nothing with them. We've considered moving to different states to live together and work together. Last year when I finished chemo the first time, the weekend of Geoff and my 5th wedding anniversary, my study buddy and her husband drove from Indianapolis to celebrate with us (btw our husbands had never met before this).

This same friend and I met in Illinois this past May to drive together to Nashville for a midwifery conference. We stayed in a VRBO (vacation rental by owner) mansion that another FNU sister found and arranged the rental of. There were 14 of us and it will go down in history as the best slumber party EVER!!!

When I was first diagnosed with cancer I told my FNU sisters before I was able to get ahold of Geoff. When I have had recurrences I've looked to them for support before telling the rest of the world. Even last week when I had the lung scare, I put a message out for support before getting my CT scan and before I had my scan I had nearly a hundred messages of support.

We are a sisterhood. I am a part of something I have never had before. I know I am loved. They commissioned a piece of art for me. For me!!! It arrived the same week as I went to Surf Camp last month.

It is symbolic of support and healing. It has been titled "Circling Up." The banyon tree is the symbol of our school and the branches in this piece of art are supposed to symbolize the support I am getting from my friends and family. The stone below me is my rock, Geoff, and the two vines connecting us are E and Ella. The posture of me is symbolic of me in a fetal position and growth, healing, and rebirth as I reflect on my own mortality. The henna on my hands and belly is a blessing of safe passage through this time..

The piece itself is stunning. The idea it was created just for me blows my mind. The thought that went into it is even more mind blowing.

In reality I just wanted the opportunity to be with my sisters this weekend and frankly again, next year. It's been a bittersweet day for me as I watch with the pictures on my Facebook feed. I'm so happy for them and they make me smile and occasionally they make me cry. I read a book about the Frontier Nursing Service that one of my preceptors (also a Frontier alum) gave to me to the kids as bedtime story tonight. I told them next year I would take them to meet the "Angels" (the midwives) in the story.

I also watched the video that all of us FNU students have seen about a thousand times...and then I watched it again with Ella...and then again on my own. I cried each time...because I can literally feel my sisters there with me, singing along, and holding hands. 


It's In Every One of Us

I also can hear Kitty Ernst, one of the original Frontier Nursing Service midwives, and the founder of the distance learning program telling us to go out there and change the world. She has high expectations for each of us...no joke.

Melissa and I with Miss Kitty

In the meantime, I've decided that as soon as I'm done with my midwifery program I'm going to do the extra clinical hours to get my WHNP (women's health nurse practioner) too, so next year when I finally go to graduation I'll being celebrating dual degrees. Also, I'm planning to be happy and cancer free.