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.