The Big Day

Well, it's here. I'm in a surreal state of numbness at the moment. Which is better than freaking out, so that's good. ;) Thank you to everyone who has reached out today with warm wishes.

Claire is at her mom's and James is off to her sitter's for the night. We had a nice Thanksgiving in Ionia and fantastic family time the rest of the weekend. James's favorite spot the last three days has been my lap and I have soaked up every second of it. The four of us went to a tree farm and cut down a Christmas tree Saturday afternoon, then decorated it while listening to Christmas albums, which was lovely. James doesn't remember any of it from last year, so it's pretty exciting explaining it all to her. 

Well, I'm off to hang out with Daniel and try to relax. I have to be done eating by 10 p.m. and no water, etc. after 5:30 a.m. We'll be at the hospital at 7:30, surgery starts at 9 a.m. I should be done around 2 or 2:30. 

Daniel is going to post an update at some point tomorrow so you can look for it here. His brother is coming to spend the day with him at the hospital, then my sister is going to come in the evening to tag him out so he can get James. I'm only in the hospital overnight. Tuesday I'll be discharged and head to my sister's. 

Thanks again for all the love and well wishes. See you on the other side. XO

Checking Things Off My List

Hello! Lots of people have been checking in and wondering how I'm doing, so I thought I would do an update. Florida was a wonderful break. We had great weather and the condo where we stayed was perfect -- with two pools, a hot tub, and a lazy river -- all right on the beach and the boardwalk. AND there was a movie theater next door. 

I didn't feel great for the first few days, but it was still a very relaxing trip with a wonderful view. I felt OK traveling, but I think it wore me out more than I realized and I slept a lot the next day. I mostly stayed in the shade and got in the lazy river with my book or magazine. We managed to see a couple of movies (Dr. Strange and Hacksaw Ridge) and I actually finished a book (in one day, no less) for the first time since James was born (sad, but true). We even got to take an afternoon trip up to St. Augustine where we had lunch with my aunt and uncle who I haven't seen in about two years, then toured the Castillo de San Marcos and walked around old town a bit. After visiting my dad and stepmom in Daytona Beach for almost 20 years it was strange to be there as a true tourist!

Now I've got my to-do list I'm chipping away at as surgery gets closer and closer. I have to be reminded (literally, by Daniel) that things will just be on hold for a few weeks. It's not as if I'm disappearing forever on Nov. 28. But still. I want to get some things done and organized and cleaned, etc. while I can, for his sake as well as my own. Of course I'm also getting things around for surgery, picking up my prescriptions, etc. I'm hoping to have the energy go get a little raking done Friday while it's warm out. James has requested an orange rake in her size -- we'll see if I can find one.

I'll admit, I'm not ready for surgery. Not that that matters a bit. It's happening. In 13 days. So I better just deal with it. The weekend after my last chemo was tough. Chemo was finally over and I could no longer avoid the reality of the surgery looming. The bottom line is that I A) don't want to have to do this again and B) do not want to die. So, I'll do what they tell me needs to be done. I will show up for surgery as instructed. 

It sounds simple enough -- to do what you need to do to not die -- but it's still hard. Having any external part of your body removed kind of messes with your mind, not to mention a part that is involved in gender identity (if that's the right way to phrase it). Some people have said, "You're getting new ones though!" Yes, but not the same. Or "How fun! You get to pick a new size!" No, I don't. I try to look at the silver lining as much as possible, I do, but it's just not the same as having elective breast augmentation. 

To explain that last part, we'll expand the expanders as much as we can in 6 or 7 weeks after surgery. Because I have yet to do radiation and they need to get to it, my plastic surgeon said we'll likely expand them weekly instead of every other week which is the norm. Then, they are where they are after several weeks, we stop and get to radiation. This will be nowhere close to my current size. A change, for sure, but I'll get used to it. 

In addition to taking the Tamoxifen daily, now it's been suggested that I remove my ovaries too. That or get a monthly shot to shut them down until I go through menopause naturally. That's something to be decided later. First I get through this surgery. 

BUT I'm mostly fine and just trying to enjoy being home, feeling pretty well and being able to take care of the kids and hug my family while I can. I'm grateful to have a great place to recover after surgery, but it will be hard to be away and then hard to be physically limited once I return. I won't be able to pick up James for several weeks and that seems strange. She didn't like it when I couldn't pick her up for a week after my port surgery. We were getting dressed the other day and I was trying to explain to her what was going to happen in terms she can understand. I suppose some people probably think it's unnecessary, at 2, but she's smart and she understands a lot. I'd rather tell her ahead of time so she's not quite as surprised after (like how I tried to tell her when I was going to lose my hair). Perhaps she can understand my limitations and physical changes easier that way. Who knows if it will make a difference, but I figure it can't hurt. 

I get my first infusion of the Herceptin only this Thursday. From what I understand, the side effects should be minimal, especially because I've already been getting it for a few months. Fingers crossed. 

I hope everyone has a nice Thanksgiving! We'll be spending the holiday in Ionia then coming back and getting a Christmas tree so we can decorate as a family. A little earlier than usual but I want to take part.

I hear often that I'm strong and brave and a "warrior" and all of these things I often feel that I'm not. Yes, I have a positive outlook and most days I'm just fine. This is all happening and we're dealing with it the best we can, laughing and loving along the way. But, it's hard and scary and sad. I'm not always brave and strong. Sometimes I have to grieve the things I'm losing although I'm keeping my life. Sometimes I cry. A lot. I think it's important to finally say so. I had my first person reach out to me this week who has breast cancer. She's a friend of an old friend of Daniel's, essentially, and only knows about me or all of this due to us being open (I imagine on Facebook). She doesn't know anyone who's gone through it and just wants someone to talk to who gets it. And an acquaintance of mine reached out today to tell me she's been having some pain and is going in for a mammogram Thursday. I figure if I'm going to put it all out there -- the facts -- I should be sharing the hard parts too. And that it's OK to not always be or feel strong and brave and put together. Cancer sucks. It's unfair. It's unpredictable. And whatever you are feeling in any given moment is OK. That much I've learned. It remains surreal to have first person knowledge of any of this. 

Thank you to everyone who continues to check in, bring meals or send a gift or card. I can still only barely wrap my head around all of the generosity that has come our way. A simple thank you doesn't seem like enough. I may never get around to properly thanking everyone who has donated or helped in some way. Just know your kindness is not lost on us. 

Chapter 2

I'm getting through this round of chemo quite well -- thank you to everyone who has checked in. I'm not sure whether it's the reduced dose, the daily IVs or both, but it's not so bad. I was even able to go out for a bit of trick-or-treating, then waited in the car for everyone to finish up. Tonight I was able to go to Claire's showcase (donning a mask of course), but I was there! In August I was in the hospital and missed her show. While it's not so bad, I'm really glad that part is wrapping up. I'm still tired and nauseous every day and super ready for that to be over. 

Hopefully by the end of the weekend, that will all subside and we can set out in Florida to find some delicious things to eat. We'll see if I'm able to get everything ready for the trip and for the grandparents who will be watching the kids. I imagine the kids won't starve or be naked and the same goes for us, so I'm not going to worry too much about it. 

I met with my oncology surgeon today and finalized the details. Surgery is confirmed for the morning of Monday, Nov. 28. We discussed the finer points of the surgery and what to expect after. Essentially, it will be a double mastectomy, with lymph nodes removed on the right. How many depends on whether they are positive for cancer cells after the first few are removed. Then the plastic surgeon will do his thing and finish the surgery. I'll stay overnight in the plastic surgery suites and my recovery care will be handled by the plastic surgeon. 

I'll recover for several weeks, then he will begin the process of slowly expanding my skin to make room for implants. How long will depend on various factors, but they can't radiate until we're done expanding so we need to move through this part as soon as we're able and get to radiation. Hopefully there won't be any additional surgeries during this portion (there sometimes are if more skin, etc. is needed) and everything will heal according to plan. 

Then we move on to six weeks of radiation, a month-long rest and then swap out the expanders for implants. I never thought I would discuss such things with so many people -- I don't even know who's reading this! It's just a part of my body at this point -- we might as well be talking about my big toe, I suppose. 

That's the latest. I don't expect any big surprises when I meet with the plastic surgeon tomorrow or my naturopath. Just some details on what to expect after surgery and how my post-op will go. 

I hope to have VERY LITTLE if anything to report in the next 4 weeks so, until then, no news is good news! I'll be sure and tell Daniel and/or my sister how to log in here to keep people posted post-op. Have a great Thanksgiving everyone!

Chapter One: CLOSED

Yay! Chemo is over! Despite waiting a week my white blood cell count was still low, BUT my neutrophil count (which is what fights infection) was up so they let me do it! They reduced the dosage of two of the drugs that affect white blood cells the most. The other two stayed the same.  So... DONE. My chemo buddy who I always sit next to even drove up to visit me. I still have to go in every three weeks for one of my drugs, herceptin, every three weeks until July so I'll be sure and schedule that on Thursday mornings so we can hang some more. 

With my low white blood cells I still have to be careful. I should buy a hazmat suit to fly to Florida next Wednesday. I'll be very careful. I'm going in for fluids Friday, Monday and Tuesday so that should help me to feel a little better a little faster this time. I wish I would have done it every time! The reduced dosage should hopefully help me not feel so crummy also. 

I meet with my surgeon, plastic surgeon and naturopath next week before we leave town. So, I'll know the full plan for the surgery and what to expect only n all counts. We've thinking I'll probably stay at my sister's house for at least the week after surgery. I won't be able to move much and it will be too tough to set up shop downstairs with a 2-year-old around and the other option is to be set up in my bedroom staring at the wall. This way Daniel can work and take care of the kids and not have to nurse me too much and my mom can come for the week and help take care of me. As far as I know, surgery will still be Nov. 28 despite chemo being pushed back a week. I think four weeks is enough and the only reason it was 5 was because of Thanksgiving anyway.

Other than that, I went to the cardiologist yesterday for a check-up on my heart and had an echo. It showed a small amount of fluid around my heart. He wasn't concerned and it's so small that it's not like they could drain it even if they wanted to. I'm going to stay on the anti-inflammatory medicine they gave me to help and I'll be back after I heal up from surgery for another echo to check. 

That's about it! I have a few things I have to do tomorrow, unfortunately, but then I will hunker down for the weekend. James will be at my mom's until Monday and that will help. I have a little person at my feet asking me to help her go find her daddy, so I better tend to this very important business!

Update and an Auction

Hi! Nothing new to report health-wise. I'm hanging in there. Not overdoing it, staying away from sick people. I'm really nervous my counts are going to be too low on Thursday again and really screw things up (schedule-wise, both personally and my surgery date, etc.), but there's not much I can do about that. Cross my fingers and hope for the best. 

For anyone on Facebook, this weekend there will be an online auction benefiting me this weekend. My friend Sharon nominated me for it, which is really nice. It started to benefit a woman named Gwen Edwards, who recently passed away, and has continued with difference beneficiaries for each auction. The auction is winter-themed -- I'm not sure how strict the interpretations are on that. 

You can find the page for the auction HERE. It's a private group so you have to join. There is a post at the top of the page that answer any questions you might have and you have to comment "Agree" to participate. They are listed there, but the basic rules on bidding are: Bidding is open at 5 p.m. Friday to 4:59 p.m. Sunday. If you bid before that, it will be deleted.The opening bid and the shipping will be listed. Bid in whole dollar amounts.  You pay via PayPal. 

To donate, there's a file (under "Files" at the top) on how to post something you would like to contribute. Apparently if you're new to donating on there you can only do one item. Once that's successfully delivered to the top bidder, you can post multiple items in future auctions (and you should -- this is such a good idea!). Apparently most things are handmade. It doesn't have to be a finished item. You can post something that someone can custom order, etc. There are a handful of volunteers who run the page, so you can message them if you have any questions. 

If there's something you can't figure out, feel free to ask me -- I'll answer to the best of my knowledge. Bottom line: invite people to the auction page via this LINK and the post at the top of the page should answer most questions regarding bidding or donating or direct you to where you can find them. 

Hope everyone's having a nice week!

Delayed

Well, today didn't go as planned. We got up early, got Claire off to school and James off to daycare, picked up our other car from the shop, stopped at Starbucks and got to the cancer center at 8:45 a.m. --  15 minutes early even. I was ready to get chemo over with.

The first stop is always to tap my port and get some blood, then the doctor or her PA, Jen. Today it was Jen. Unfortunately, my white blood cell count was low. Too low for chemo. They ran it a second time and it came back even lower. UGH. I'm not going to lie: instant tears. I really want to get this period over with. Not to mention the fact that you schedule your life around your chemo schedule. I estimate a week "off" for feeling like crap. And last time it took 10-12 days before I started feeling decent. I have a slew of appointments Oct. 31 through Nov. 2, not to mention Halloween and Claire's aerial showcase (I missed the last one because I was in the hospital) and we're going to Florida Nov. 3 (Yes, we have travel insurance, etc.). So, I'll either feel crappy or have to miss some things.

Jen's response was, "Well, what can we do to make sure you don't feel so crappy? Come in for IV fluids every day?" YES. That would help immensely. The best thing to do to feel a bit better and to get the chemo out of your system is to drink lots of water but, being nauseous and sleeping a lot I can still only do so much. So I'll go in every day they will let me. Maybe get some good nausea meds while I'm at it. I hope that helps. 

When your white blood cells are this low it also means you have to be very careful not to get sick. That's why I avoid sick ones, many people take their kids out of daycare (wasn't really an option for us), etc. I've never had low blood counts since this process started. I asked if they could give me something -- like the Neulasta they give me right after chemo to help bring my white counts up, but she said no. We wait a week, no less than a week and try again. I'm going to be so nervous next week hoping they came back up. 

I know it's not the end of the world and I'm grateful to have a week of feeling good, but it's still disappointing. It was a crummy, rainy day and I gave myself a pass. I accomplished nothing, watched some TV and took a nap. Maybe I need to be doing a little more of that and get those counts up! 

Thanks for all the well-wishes today. Fingers crossed for next week! 

Good News!

I got the call today -- the call I wish I had gotten back in June. The biopsy was benign! There was a little hilarious confusion when the woman called to let me know it was benign, could hear my sigh of relief, then got confused when I stopped her from telling me about getting regular mammograms to let her know I was having a double mastectomy next month. All she knew was that the biopsy wasn't cancer -- not that I already had it on the other side, etc. It was funny. Maybe you had to be there...

I'm awfully relieved that we're still just dealing with the right side. This means they can leave my lymph nodes on the left alone during surgery and I don't need radiation on that side. At least I think that's the deal. So good to have a little bit of good news even though I was prepared for the opposite. 

Still feeling well and trying to do some things around the house and outside in this gorgeous weather before Thursday. As each chemo is taking a little more out of me and lingering a little longer, we'll see when I come out the other side. Hopefully I'm doing OK by Halloween. We'll see!

Quiet Week Ahead

I'm finally feeling well and looking forward to a healthy week ahead with the family. We've got plans to hit the cider mill on Saturday morning -- along with everyone else in Metro Detroit most likely. We haven't gone in a few years -- since before James existed -- and it will be her first time there. And, dare I say her first donut? I told her about it today on the way to school and she's very excited for a donut, "special apple juice" called cider, pumpkins and maybe some animals. Depends on where we end up going. Even though she's normally at her mom's Saturday, Claire's going to come back to our house so we can go as a foursome. We haven't had a picture of the four of us for a year so I'm hoping we can find a kind stranger to take a decent photo of us somewhere. 

My biopsy was Wednesday and went fine. For something that they made sound horrible it was no big deal. FAR better than my first series of biopsies, one of which was very near by ribs and I could feel no matter how much they numbed me. This was me laying face down on a table for about 45 minutes without moving while I went in and out of the MRI machine and eventually they did the biopsy. It felt like they took five or six tissue samples. Afterwards I was bleeding a little more than they liked so they kept me there trying to resolve it for an extra 45 minutes or so. They say I'm going to have one heck of a bruise for several weeks. It was a little uncomfortable the first night but two days later it's barely sore and I'm doing fine. I heard the doctor say it was superficial so I'm guessing that's why. 

Last time my biopsies took about 48 hours to get the results. They were done around 4 p.m. on a Friday and by Tuesday afternoon (not counting the weekend) they were calling to tell me I had cancer. SO, I'm hopeful to hear sometime today or, if not, by Monday. I'm still hopeful it comes back as a random cyst so we're still just dealing with the right side for lymph nodes, etc. during surgery. But, it is what it is or some other cliche and I'll deal with it if it's not. 

I finally made it to my first support group at Gilda's Club across the street. It's a group for women under 40 who have breast cancer. It was good for a couple of reasons. For one, a lot of people have it worse than me or are facing more challenges than me. After a series of side effects, struggles and hospitalizations, it was a good reminder that I'm fortunate in many ways despite a series of unfortunate events. My cancer seems to be contained within one (or two, I suppose) breasts. One woman who learned she had breast cancer while simultaneously suffering from a broken back because the cancer had spread to her bones. There's no reason to think I can't return to my profession after I'm through treatment. While I continue to have a hard time with the fact that having more kids has been taken from me, I'm lucky and happy to have Claire and James already. I have a supportive partner instead of A) not having one at all and B) having one who will surprise me with divorce papers the day after my last chemo. These are just a few of the ways I know I'm lucky. 

It was also good because a woman was there who just had a double mastectomy three weeks ago. As I start to mentally prepare for surgery, I'm feeling a mix of emotions. It's just plain weird to have to lose body parts. And, quite frankly, I don't want to. Add to that the anxiety of what the actual pain and experience is going to be like. She was doing great though, mentally and physically and it was good for me to see. She was moving around great and said she wasn't necessarily supposed to be up and about but that going to a meeting seemed justifiable. She was an open book and showed me her scars which, for being so new especially, didn't look that bad. It calmed one or two of my nerves. :)

Well, I'm going to make the most of this day of feeling well and get some things done around the house. Have a good weekend everyone -- enjoy the last of these mild temps!

Busy Weekend

I probably had my busiest weekend in quite some time. I think I assumed I would be back in action and feeling fine by Friday, as has been the case so far, but this last chemo lingered. In fact, I'm still a little nauseous all day, every day. It just won't go away. In my head it would get easier as I would be "used to it," but in reality, the more chemo you have had, your body gets more worn out and tired and each infusion is a little harder on you. I suppose my micro-hospitalization should have been a reminder of that fact, but I guess I forgot. 

Although I was still feeling pretty rough, I wasn't going to let that stop Daniel and I from going to Toledo to see Jerry Seinfeld perform. Traffic was far worse than I anticipated getting James to my sister's and then driving to Toledo, so, although we left the house 3 1/2 hours before the show we got there just before he took the stage. For the next hour and a half I mostly forgot about everything that was going on and laughed. I hate wearing a mask, so that was about all that stopped me from being totally immersed in the show. I hope to see him again some day mostly to see what he comes up with -- he seemed to cover all the bases of family life, marriage, etc. I'm so intrigued to see what material he's able to come up with a few years down the road maybe.

Saturday I still felt awfully worn out, but didn't feel as sick as I had on Friday. I headed to Ionia for the "Think Pink" fundraiser and I'm so glad I made it. I have a hard time accepting help and charity, though I've been getting better at that! It was so great to see the enthusiasm of Nicole, who beat breast cancer a few years ago and has held the annual fundraiser since, and all of her friends. I couldn't bring myself to grab the mic and say thanks because every time I started to think about it, I welled up. I knew I wouldn't get through it anyway. It was a fun night though and I look forward to contributing next year in some way (and staying to enjoy the party longer!). I may have to steal the idea and hold a Think Pink Detroit next year too. 

Then I raced back to Detroit Sunday for another fundraiser. I am certainly surrounded by kind and generous people. My amazing friend Stephanie (you can check out her many talents HERE) held a donation-based yoga class in at Yoga Shelter Grosse Pointe. The group stayed behind a few minutes so I could get there, even if I couldn't be there for the class. I haven't seen some of my best gals enough lately and it was great to arrive to see their familiar faces (and one male friend -- I'm not leaving you out, Kevin!) along with a couple of strangers who attended the class. 

I continue to be overwhelmed and inspired by it all. Thank you doesn't convey what I'm feeling, but... Thank you. THANK YOU.

MRI biopsy tomorrow morning, then one week until MY LAST CHEMO. Woo hoo! 

Biopsy Postponed

Well, this little mass -- or whatever it is -- is so small they couldn't even find it on ultrasound today. So, I have to go back next week for an MRI-guided biopsy. Which doesn't sound like a super fun time (It was noted they could give me valium if I needed it...), but I'm thankful to have a couple more days to recover from chemo without the added pain, etc. I had a tough day/night yesterday and am feeling a little better today I think. So, next Wednesday morning it is. 

I reached out to a couple of friends who have had mastectomies this week (it really sucks that I have more than a couple of friends who have had mastectomies) and am starting to gather the items I think I'll need during recovery. A wedge pillow, robe/apron with pockets, various articles of clothing. I haven't spent too much time thinking about it, but now that it's October, it's happening "next month" and it's time to prepare. Trying to get creative so I don't have to break the bank for things I'll only need for a few weeks. It sounds like I'll be in rough shape for 2-3 weeks, really recovering for about 8 weeks and uncomfortable and possibly sleeping sitting up for even longer than that. Almost sounds like it would be worth it to rent a hospital bed! But probably not. Back to the not breaking the bank thing... 

Two more weeks until my last chemo. I'm counting down the days. I have a couple of friends who are wrapping up chemo this week or next and will be DONE with treatment and I'm ecstatic for them. When I join your ranks next year, we will celebrate, friends.    

Almost There

Well, my famous last words of "without any hospital stays..." Throughout Sunday, my anxiety and uneasiness got worse. By the time I was attempting to go to bed, I couldn't sit still, didn't feel well, my heart was racing, I was short of breath if I did the slightest activity. I came downstairs and Daniel said I looked pale. We were left to assume my heart again, as it's exactly what happened last time, and decided to go in. 

I got to the ER about midnight and they thought they saw some fluid around my heart. Not as much as last time, but some. So they admitted me. I didn't get to bed until about 4 a.m. and they were waking me up before 7 for tests and scans. They gave me some stuff to help me sleep throughout the afternoon. I was in a cushy oncology room this time, all to myself, so that helped. If you're sleeping they will quietly open your door and back out and get your vitals a little later most times. It's sooooo much more accommodating than some of the other areas of the hospital. 

They sent me for a heart scan that morning, where, again they thought they saw a little fluid. I was still feeling uneasy and having trouble being comfortable. It's not "oh, this hospital bed is uncomfortable" uncomfortable. I don't know how to explain it. Like crawling out of my skin. But it wasn't as bad as at home. They had a portable monitor on my heart and every time I would significantly move around or go to the bathroom they would come see what was up -- I guess my heart rate was getting pretty high with even minimal activity. 

At 10 p.m. Monday I had a CT Scan. The heart doctor, who had drained the effusion last time, came to see me Tuesday morning and said the CT Scan showed no fluid. He said the other tests must have mistakenly identified some sort of tissue as a little fluid. There are some conflicting theories as to what was actually going on between the various doctors, but ultimately the heart doctor said he thought my heart being goofy because of chemo. I know chemo is supposed to be hard on your heart. They said that my resting heart rate is a little higher going through chemo and when you JUST had chemo, are perhaps a little dehydrated (I was doing my job! I was drinking water -- you can only do so much!), it can make your heart rate rise and the general fatigue can make you winded. I feel like I went there for no reason, but they said I did the right thing and never to hesitate to go in. In the grand scheme of hospitalizations this one was pretty easy. Never fun to be away from home and just feeling all those things stinks. But I was home by Tuesday afternoon. 

I've always heard that the longer you're in chemo the tougher it is on you and the longer it takes you to recover. I'd say that is definitely happening. It's Wednesday morning now and I really hoped a night at home would help me feel a little better. I didn't sleep well last night and I'm feeling rough. I suppose I'm a little eager to get back to that 'feeling good' point. But I guess I have another lazy day ahead of me. 

My only task I need to accomplish today is to pick up all my films from the hospital where I was originally tested back in May so I can take them to my biopsy tomorrow. They actually just called to say the biopsy may not happen. Apparently they're doing an ultrasound first, THEN deciding whether an actual biopsy is happening or not. I'm assuming so and I guess it will be a pleasant surprise if not. The last biopsy was pretty brutal, so I'm hoping this one won't be so bad. 

Hoping to make it to the fundraiser in Ionia this weekend, but that requires driving, etc., so we'll see. I'm hopeful. It looks like it's going to be a lot of fun and hopefully I can make it to Ionia and at least come down to Steele Street Hall for a couple of hours. It's 5 p.m. to 11 p.m. and there will be BBQ, a silent auction, 50/50 raffle, live music. All of the info is on Facebook HERE. One concern is the fact that cold and flu season has reared it's ugly head. My immune system isn't top notch right now so if I do go, please don't be offended by my mask and the fact that I won't be hugging or touching anyone. I just can't risk it right now and need to stay as healthy as possible. 

My lovely friend Stephanie is hosting a donation-based yoga class at Yoga Shelter Grosse Pointe at 1 p.m. Sunday as well. I won't be able to do yoga this weekend after the biopsy, but I hope to arrive toward the end of class to say hello to everyone and maybe sneak in for some quiet time at the end there. All the details are HERE on Facebook. 

I imagine I'll get some results on the biopsy by early next week. So until then I just have to rest, recover, take advantage of those "good" days when they come and wait for number six. I'm dreading it and CANNOT WAIT for it. I'm ready to be done with chemo for sure. Hopefully that will go as planned and Daniel and I will successfully go on our little Florida getaway before surgery without a hitch. Thanks again for all the well-wishes and check-ins this week!

You Take the Good, You Take the Bad

Note: This was written on Friday, Sept. 30:

Five down, one to go! Hallelujah! Feeling mostly fine today. Trying to drink a ton of water and hopefully I can get through this round relatively unscathed, with no major complications and no hospital stays. I remain hopeful!

I had a rough couple of days emotionally leading up to it. I've been feeling so good and was just dreading feeling like crap again. I momentarily channeled my strong-willed toddler the night before and just plain didn't want to go yesterday. I hear all the time how positive and strong and brave I am. Some days that might be true. Some days it's not. But lately I'm just over it. Over it all. After a week out of the hospital, feeling like a normal mom going grocery shopping, a fun trip to the park Dan and James and with friends coming over Sunday night to hang with the whole family, I had a hard time preparing for not feeling well, for James going away again. This wasn't how the summer was supposed to go. BUT, I don't have a choice. I'm not going to NOT go and, after letting it out the other night I snapped back to reality and am continuing to put one foot in front of the other. Do what I need to do. Follow orders and keep moving forward. 

I have several friends going through cancer treatment, unfortunately, and we have real conversations -- about the hard parts and the frustrating situations -- as well as encouraging other. Some days I feel like a big faker, keeping my gripes to myself and just sharing the facts on here. But know that I'm not always positive and I'm not always strong and the continued support of you all out there, in addition to my incredible husband and kids here at home, helps more than you know. Thank you. A friend in treatment said she was advised to cry in the shower and keep a smile on her face out in the world. I try to follow that as well and it helps keep me in a good place. But so do all of you. Thank you. 

Back to the facts. I had a follow-up with the cardiologist this week. My EKG looked fine and he put me on an anti-inflammatory to help keep the fluid from reoccurring. He said the fluid didn't show any sign of infection, etc. and is just a symptom of the cancer itself. I'll do a heart ultrasound in a month and hopefully there won't be any fluid. 

Got some news yesterday. When this all first started, I first went to get checked because of some pain in my right breast and an area that felt like a muscle knot kind of. Long story short, when all of the results came back and they said it was cancer, my midwife (full disclosure: she's also my landlord) met me at a park by the house to go over all my results with me. In the paperwork it said my left side was clear. But I didn't remember them doing a mammogram on the left. She showed me where it said my left was clear. We looked at the order and she had ordered both sides. Huh. DID they check my left? I was SURE I didn't remember that. I thought I was nuts and we moved on. Maybe they checked it? My head was spinning with all this information and I just wasn't sure. 

I was handed off to who are now my surgeon and oncologist. Everyone did exams on both sides. Left felt fine. That was that. A conversation with my surgeon about six weeks ago was about my surgery and whether or not I was going to do both sides, which I've always intended to. She started flipping through my chart to look at what info we had on the left side and I told her about not being sure about the mammogram. SO, she ordered a bilateral breast MRI. 

It got postponed the last time I was in the hospital and we did it on Monday. The test results came back yesterday with mixed news. Good news first -- the original mass in my right breast is GONE. The chemo is working. The mass is gone. Since the mass isn't the only thing we were working with -- the entire breast showed cancer cells, more good news is that I'm down to roughly 15% of diseased tissue, especially with yesterday's and my last chemo yet to go. The hope has always been to greatly reduce or eliminate the visual presence of cancer before surgery since it was so widespread within the breast (but so far contained within it). So, the plan is working. 

Unfortunately, there is a mass on the left side. It's very tiny. Less than a centimeter. I'm left to assume it's always been there and is so small because of the chemotherapy. But we don't know. I'm more convinced than ever that I was right about that mammogram and they hadn't performed it on the left side.  Either way, it's there. We don't know if it's contained within a duct or inflammatory like the right side. There's a chance it is just a cyst and isn't cancer at all, I suppose. I have no symptoms visually on the left as I do/did on the right and, even knowing it was there my oncologist couldn't find it during an exam yesterday. I have a biopsy scheduled for next week, then we'll have a lot more answers and my surgeon can truly make her plan of attack.

If it HAS always been there, treatment would have been the same. Exactly the same. So, technically it's not a big deal. It will change surgery, my recovery time, radiation, etc. so there are a lot of variables. 

Update: It's now Sunday afternoon. I never quite got a chance to read through and post this Friday. Doing OK still. Sleepy and blah, but not bad. Just have to get through the next couple of days and hopefully I'll be coming out the other side and looking toward #6. My biopsy is early Thursday morning. Hopefully not as uncomfortable as the last one, but maybe it will seem like nothing after all the poking and prodding I've endured since then! Happy October, everyone. It's Breast Cancer Awareness Month -- thanks for all the love and support.

Heading into #5

Hello! Nothing major to report in the last week or so -- FINALLY a boring 10 days in a row. My chest is feeling 90% better at this point. I know they had a tough time getting to the fluid because my rib was in the way, so I guess I should have expected it to be sore for a while. My follow-up appointment with the cardiologist is Wednesday. My test results are in my online chart, but I have no idea what they mean despite incessant googling. So, I'm eager to hear what he has to say. 

My stomach problems come and go. I know it's supposed to be a slow return to digestive normalcy after a really bad cdiff infection but I'm ready. I've started testing the waters eating more vegetables and salads from time to time. Sometimes it goes well. Sometimes not so well. 

This morning I had a breast MRI. Boy is that easier than the last MRI I had of my abdomen where I had to try so hard to stay still, hold my breath forever and was fully aware of the fact that I was in a big tube. For this you just lay on your stomach with your face in a massage table-type ring and rest. At least that's what it felt like to me. Over before I knew it. 

I got the MRI because my surgeon wants to make sure the left breast is clear, as suspected, so there are no surprises during surgery. I meet with both surgeons the first week of November so we can plan our attack. Well, so they can plan their attack and let me know what to expect. The surgery used to seem so far away. Now with my fifth round of chemo in a few days and my sixth and final in three weeks (woo hoo!), the surgery is getting awfully close.

In some ways the surgery has seemed like it would be the easy part. There are so many unpredictable parts of chemo -- how I'm going to feel in general, whether I'm going to have an appetite, whether my crappy immune system is going to lead me to some illness (oh, like strep or cdiff perhaps). It almost seemed like the pain of surgery would at least be more predictable or manageable. Now that it's getting closer, it doesn't sound so easy! 

I'm doing what I can to be prepared. I guess that's all I can do. I've got most of my Christmas shopping done. I just need to get it all wrapped and ready to go before surgery. I'm hoping we can get a Christmas tree Thanksgiving weekend so I can be a part of the tree-trimming festivities. I've researched what clothes to have handy (oversized button-down shirts) and what supplies can make the first couple of weeks after surgery the most comfortable (wedge pillows, or lots of any kinds of pillows).

I guess with all my hospitalizations we've had some trial runs around the house as to what it will be like to have me totally incapable of helping out around here for a while. Except Daniel will have one more person to take care of with me here. I can't thank everyone who continues to reach out, bring over dinner, etc. Even on the days I'm feeling pretty good, I don't necessarily have the drive or energy to make dinner. And I swear if I push it too far (which isn't much, to be honest) one day the next day I'm dragging. 

Daniel and I are going on a doctor-approved and -encouraged getaway to Florida between chemo and the surgery. We wanted to go somewhere warm and were looking at Miami. My doctor asked us not to go there, due to the mosquito situation (I knew there was a reason why there were such good deals everywhere!). She wasn't so concerned about Zika Virus itself but the other things the mosquitos are apparently carrying. She just doesn't think we should take a chance. SO we're going a little further north in Florida and hoping for some decent temps. I've spent plenty of time in Florida as my dad and stepmom lived there for about 20 years, but never as a tourist really. We're looking forward to being as lazy as possible and checking out some vegan restaurants I've already researched. 

That's about it! A busy couple of days of appointments ahead of me before chemo Thursday, then I'll hunker down for the next several days and come out the other side. Acupuncture seems to be helping with the hot flashes after just a couple of treatments so I'm going to keep those up and take advantage of the half off they give oncology patients as I continue into the next phases of treatment. 

Thank you to everyone for your well wishes and to everyone who was a party of Community Awareness Purple Week in Ionia. Thanks to mom for representing me at the soccer and football games as I rested at home with my family. We appreciate the support and feel the love!

Home!

I probably should have updated this before midnight so it would go out via e-mail, but oh, well. It's now Saturday morning and it was SO nice to sleep in my own bed last night, with out a blood pressure cuff going off on the hour, people coming in to take blood, machines beeping, noisy neighbors and having to unplug and unhook several things in order to go to the bathroom. 

As soon as I got the green light to go home, I sprang into action to change and pack-up and the nurse asked, "We're not THAT bad are we?" Well, no. But yes. :) 

Yesterday afternoon they took me to get a follow-up heart scan which showed no new fluid, which is great. They almost transferred me out of the ICU and kept me there but I assured them I could handle my upset stomach on my own and they set me free! The labs showing what the fluid was and why it was there weren't back yet. I'm not sure how and when they'll let me know. The one test that came back was that there were no cancer cells in the fluid -- which everyone suspected -- but it was sure nice to hear, especially when "but that never happens" seems to keep happening to me. I'll be curious to hear what the verdict is, but I'm not stressing it. 

Part of the reason I was hurrying to get the heck out of there was because my mom and Aunt Janet were coming to pick up James for the weekend so I could properly rest. I literally passed her as she returned with her Monday and I was heading out the door for the hospital so I had barely seen her in more than a week and just really wanted a squeeze before she left again. Mom and Janet waited for us and we got a few squeezes in and packed her up in the car. 

The plan is for me to be lazy to the max this weekend. My chest still hurts quite a bit -- a really odd sensation really -- and it's so strange to me that things can puncture everything that they punctured in there and it just heals closed. So, I'm going to let it do that. Perhaps from laying around for a week also I'm getting a little winded if I get up to quickly or do too much, so I have a constant reminder to just sit down, put in a Netflix movie and do nothing. I should have a good, healthy week and a half before my next chemo to accomplish a few things. 

I live across the street from Gilda's Club, which, if you haven't heard of it, offers support to people go through cancer treatment, survivors, their families and caregivers. I've been away almost the entire time since I did my orientation there a few weeks ago, so I haven't had a chance to take advantage of everything they offer just yet (support groups, yoga, meditation, lectures, workshops, classes, art therapy, special events). Their annual fundraising 5k walk/run is today. Last year Claire made a big sign cheering them on and we were going to sit outside with waters for them, but, like this year, it was a rainy day. So, we stayed inside and Claire and tiny James waved to them through the front window. Here's hoping by next year I can be out there walking and raising a few bucks for them! 

Have a good weekend everyone!

Hopefully By the Time You Read This...

I'll be home. It's Friday morning and I'm still here at the hospital. They did the procedure Wednesday right here in my ICU room. Kind of turned it into a mini-OR with a  team of people, including the woman who did my original heart scan Monday afternoon when I was struggling. Because I didn't have a massive amount of fluid, they had a bit of tough time getting at it, as one of my ribs was right in the way. That meant a lot more pain meds, etc. for me during the procedure. The drugs made me sick and I mostly slept for the next 10 hours. 

They left a drain in attached to an old-timey glass IV bottle -- how funny is that? Well, the glass bottle part. The good news was, in the next 24 hours no new fluid appeared. So, yesterday morning they removed the tube (fun times) and we continue to wait for the labs to come back. My chest and beyond still hurts quite a bit, it hurts to take a deep breath, etc., but that's starting to get a little better. The cardiologist was here just now and said it would actually be abnormal for this to be a side effect of chemo (which is what I thought) but it's possible. It may have just happened. (Not the definitive answer I was hoping for). But when the labs are back, they should know for sure. He said as long as my follow-up heart scan is clear today they'll let me go home even if my labs are back yet. As long as my oncology team is cool with that of course. 

My bigger ailment at the moment is my stomach. My system is just wrecked after the cdiff, chemo, three weeks of antibiotics, etc., so I'm having a tough time there. Nothing is making it better. They said the cdiff especially just really wrecks your system and it will take a long time to build it back up again. So, I'm sticking to the ol' BRAT diet (bananas, rice, applesauce, toast) even though I'm not hungry at all, and hoping for the best. 

That's about it. I had a nice surprise visitor this morning! When one of your BFFs from college lives 900 miles away, she sends her dad to bring you flowers and a trashy magazine. I haven't seen him in over a year and we had a nice visit. 

Hopefully my next update will be from home, hopefully feeling a little better. OK, I have a magazine to go read!

Well, Crap.

UPDATE: If you already read this Tuesday afternoon/evening, there's an update at the bottom, FYI.

I write to you again from Beaumont Hospital. This time for a new ailment. 

I started feeling pretty uncomfortable on Sunday morning/afternoon. I felt like I was crawling out of my skin, couldn't get comfortable and was generally feeling anxious. That led to a night that wasn't very restful and by Monday morning my heart was racing and pounding and I felt like I was perhaps having some kind of panic attack. My doctor sent me to get some heart function tests since I didn't want to go to the ER if I was, in fact, just having anxiety. No offense, kind nurses, but I'm sick of this hospital. 

We went in for the tests and my anxiety was still at an all time high. I had a hard time laying still enough to get through it to be honest. And that was after the anxiety meds the doctor already had called in for me. 

Within an hour of returning home I got a call that I was to head back to the ER ASAP. I have something called pericardial effusion -- fluid around the heart. And something else, the name of which I forget, but is associated. BUT, it's apparently not bad enough that it's causing cardiac tamponade -- which is actually affecting the function of the heart. So that's a good thing. 

Those are the basics I know without having yet spoken to the main cardiologist who is supposed to be here to talk to me at some point today after seeing all the tests. Ways of dealing with it include: nothing -- just watching it; using a needle and draining the fluid; and surgery, the details of which I'll omit because we're not there yet or probably/hopefully ever. I'm still getting short of breath and my heart rate goes up quite a bit when I get up to even go to the bathroom so that's not ideal (I don't think). But again, I have a lot left to learn. Hopefully the doctor will be in soon. It's almost 6 p.m. 

I'm not exactly clear on what causes it -- the one doctor I spoke to said it can happen in healthy people, an infection can cause it, or various other conditions. I know chemo is pretty hard on the heart, so I'm guessing that has something to do with it. I'll get more answers when I talk to the doc.

Meanwhile, I'm dealing with the regular ailments that come with the post-chemo fog -- nausea, stomach issues, etc. But they've got me hydrated, on nausea and other meds and are taking good care of me. 

This time I get to be on the "Progressive" floor -- one step down from ICU -- I guess because it involves my heart. I'm not going to lie -- I miss my cushy oncology digs. I'm sharing a room with a lovely 92-year-old woman who seems to be just the sweetest. Unfortunately, she has many ailments which means a constant rotating door of nurses, doctors, call buttons going off, relatives visiting and chatting, tests needing to be taking, test results needing to be revealed, physical therapy options discussed.... you get the idea. Therefore, I've literally gotten minutes of sleep at a time since I was admitted Monday evening. Fingers crossed for a calmer night tonight. 

While I was in the ER waiting to be admitted a reporter from the Sentinel -- where I had my first newspaper job -- called to talk to me for a story about some fundraising efforts in Ionia for Ionia Community Awareness Purple Week, which brings awareness of and raises funds for those affected by cancer. They were kind enough to donate some Whole Foods gift cards to me and he wanted a quote. The two calls in one day told me he was on deadline (I may not be a reporter anymore, but I haven't forgotten!), so I called him back despite the chaos of the ER, and how I was feeling. All I'll say is... I hope whatever I said made sense. Ha. 

More news after they figure this out and I blow this pop stand. 

UPDATE:
The cardiologist was here a few minutes ago (about 8 p.m.). They need to drain the fluid. It will tell him 100% what it is, why it's there, etc., since there are many variables at this point. They're transferring me to the cardiac ICU momentarily (where at least I'll be in my own room! Yahoo!). In the morning they will drain the fluid. They'll leave a drain in for a couple of days and if nothing much happens, that's good news in addition to what he determines after draining it. He explained it all in detail -- with drawings and everything! -- but that's the layman's version. It sounds like I'll be awake but "good and relaxed" according to him. He said he's done two of them in the last 48 hours and he promises I'm in good hands. I believe him. :) 

Four Down, Two to Go!

Just got home from chemo number 4! Feels so good to be over the hump. Just two left! I've feel good the last couple of days and was able to be quite productive around the house. Daniel went with me today. My numbers were good, so despite the cdiff, etc. we were able to move forward on schedule, which I'm very thankful for. It's no picnic, but I just want to get it all behind me. 

I started acupuncture at Beaumont's Integrative Medicine office this week. Hoping it will help with the hot flashes. It's supposed to work great. I still was up with them last night but only 3 or 4 -- that's actually an improvement. They're also going to target my digestive system to help with the cdiff, etc. Even better -- they informed me when I got there that oncology patients get half off while they're in treatment! Excellent news as acupuncture isn't covered by insurance. They have lots of other services there I may utilize as well. I did acupuncture for a long time while I was in Chicago which cured me of a few ailments, so I'm all in and hoping for the best. 

Feeling sleepy, so time for a snack and a nap. Looking forward to amazing sounding vegan calzones tonight via my talented friend Angela, who's our MealTrainer today. Continue to be so thankful for that. Even on days when I feel pretty good it really is so nice mentally and financially to have dinner arrive. I'm still eating a pretty restricted diet because of the cdiff -- no big bad cruciferous vegetables like broccoli, celery, etc, but baby stepping back in. So far so good the last couple of days. I need to get this infection behind me -- there are things to do and new babies to meet! 

Home Sweet Home

I was released from the hospital Saturday after about 36 hours of feeling pretty good (yes, most of the time I was in there). I'm on a higher dose of antibiotics until the 15th (one week after my next chemo) and will do one week of them for my last two chemo sessions as well. I set an alarm in the middle of the night to take that dose -- it was much easier when a nurse just appeared and handed me medicine in the night. Ha. Still feeling good at home, just get worn out and need to rest here and there. Dying to eat vegetables, but baby stepping back into eating them. I'm essentially eating the opposite of how I want to be right now, but I guess I'll enjoy all the bread while it's necessary. :)

Not much else to report. James must be going through a growth spurt and has been sleeping in (like almost 14 hours one night) so that has helped us get some rest this weekend. Looking forward to a relaxing family day today, then getting Claire off to her first day of 8th grade tomorrow. Good luck to everyone getting their kids off to school this week!

Like I Never Left

I write to you from the oncology wing of Beaumont Hospital. What an upgrade! I suppose I should back up... 

I have been home and feeling just fine -- other than a little tired, maybe -- for the last few days. Then Wednesday I woke up with stomach issues again and it appeared I was no longer improving in that department. It got progressively worse throughout the afternoon and by the time I was putting James to bed, I knew I had to call the doctor. As I suspected, she told me to go straight to the ER. 

She called ahead and they were ready for me when I got here. I got to the hospital a little after 9 p.m. Wednesday and by 11 p.m. I was admitted and in my own room. I had hoped and asked to go to the floor I was on last time because I loved my nurses, but they sent me to the oncology wing down the hall. I was supposed to be here last time, but there was no single room available, since I have to have my own room due to the contagious nature of my infection. 

What an upgrade! The room and bathroom are spacious and newer, they greeted me with slippers and snacks and a welcome packet, and because the staff is used to caring for individuals with cancer, they're fully aware of how to use my port, who the doctors are, etc. SO, not so sad to not be in my old cramped room with the creaky door. :) 

I don't feel terrible like the last time I came in, I feel like I did toward the end of the week. So, at this point they're giving me fluids, upped my antibiotics and one other thing I'll have to drink three times a day. I'm eating a carb-filled diet (low fiber vegetarian) still, which is pretty boring but necessary. And we wait. I apparently have a stubborn case of Cdiff -- which we knew -- but it's more stubborn than we thought I guess. This time I came prepared -- with my laptop and warm socks and toothpaste and magazines. Just laying low, resting and watching Netflix. I haven't slept much the last two nights so fingers crossed for tonight. Hopefully I'll have an update from home soon!

A Long Week

Remember when I said I was having stomach trouble and they wanted to rule out an infection? Unfortunately, it could not be ruled out. The day before chemo I had a rough day with my stomach and at chemo I couldn't keep my eyes open. Then Friday I started feeling terrible. I thought the chemo was just hitting me a little harder, a little faster as usually I feel pretty good until the Sunday after. I had a rough couple of days, my nausea meds weren't helping and by Sunday I couldn't eat or drink. I should have known then that something more serious was wrong but a few hours of feeling a little better mid-day made me think that it was just the chemo and I was in for a rough ride. After being up much of the night Sunday I woke Daniel up early Monday to take me to the emergency room. 

They immediately put me on fluids and nausea meds and sent me for a an extensive ultrasound of my abdomen. Within a couple of hours they confirmed it was what my doctor wanted to rule out a few days earlier -- cdiff. Short for clostridium difficile colitis -- it's a pretty wicked, highly-contagious intestinal infection. We aren't sure how I got it.  

The silver lining -- I immediately got my own room at the hospital because it's so contagious. As I would be there for the next several days this was appreciated more and more. Everyone at Beaumont took great care of me. Though they hoped I would start showing signs of improvement after 24 hours of antibiotics, it was a few days before I could see the light at the end of the tunnel. By Saturday afternoon I improved enough to be sent home. I'm on this antibiotic for another week and they said they were going to order a week of it every time I have chemo. Apparently reoccurrence of cdiff is really high and they're hoping that can keep it at bay. Anyone who knows me knows I hate taking antibiotics and I would rather treat things naturally, but obviously this whole situation has somewhat thrown that out the window. My naturopath is getting me all set on some stuff to rebuild my gut so fingers crossed I don't wind up with another case of it. It really was no fun.

Today I mostly feel good, just tired and a little out of it. Lots of appointments this week and next. Here's hoping we have a nice, calm week and a half before my next chemo on the 8th.