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.