Peek a boo

I feel like I’m playing peek a boo with my reality. With cancer and the effects it has on me. I haven’t been able to look back at the chemo, surgery and radiation fully. The effects it has on my body, my mind and spirit. The effects on my children, my husband, my parents, siblings, nieces, nephews, friends, and all my loved ones. Its impossible for me to look directly at this ugly ass beast that changed every cell and fiber of my being. Sometimes I’m hiding under a big thick comforting blanket and I’ll slightly peek out from under it. Just one little eye, just for a glimpse. I find my emotions and panic attacks set in and it’s impossible to look again. That effort failed. I must retreat back into Netflix, books or video games. The reality is too ugly for me right now. I need Peace and healing. I’ve removed all signs if cancer from my closet and dresser. I removed all the cancer stickers from my car. I want to move on, but I can’t even look forward or backwards without my blanket. I’m stuck. Sometimes I can deal with things a small bit at a time. I might even have an afgan on instead. Its filtering a lot of reality. It’s also a lighter blanket, so I can move about and take care of the house and maybe even do a project. Then, once every couple of weeks, I bravely set out to therapy and put a thin veil on to try to look longer and harder at this emotional boiling pot. That’s what I call it. My emotions are so vast and heated and they have just collected so much that I don’t even have the mental or emotional capacity to deal with any more stress. It’s about to boil over and sometimes does. Often in the form of anxiety attacks. That’s how I know I’m done. Got to look in the dumb big ass pot. And try to cool down and relax the temperature. It’s a long work in progress. And it fucking sucks. A lot.

So, my emotions prevent me from blogging. In order to look back at the past, I have to play peek a boo. I can’t wear a filter, because I want the truth out. I need to be able to share other the world my experiences. I have to face this whole ordeal and it’s about time I deal with it, but it’s not as easy as just telling myself this.

I hope I can share my journey of healing better than I shared my journey of treatment. As I heal. I believe I will be able to share my treatment more. When I started therapy, I told my therapist that my goal was to blog again. It’s difficult to blog when you can’t even bear to peek at the experience. I’m going to try to play peek a boo a bit for myself and for you.

Menopause at 38

So, it’s been about 4 days since my removal of my ovaries and Fallopian tubes.

I have been in quite a lot of pain. More than expected. I have noticed that pain causes me to have anxiety. Ive had two anxiety attacks this morning so far and its 9 am. I have been trying to cut back on my pain meds because I only have a few left. I think i could handle the pain more if it wasnt for this anxiety getting out of hand. I suppose my emotions are link to my pain somehow and its just had enough of this last year.

I’m on the search for a therapist to help me sort this all out but, damn. Life after cancer is still so frustrating.

The above was written on March 4, 2019. I had my ovaries removed to help prevent this damn cancer from coming back and I need all the help I can get. Estrogen and Progesterone fed my cancer, so I need to keep it out of my body. I didn’t publish at that time for multitudes of reasons at that moment; it was difficult for me to sit and type, the pain meds made me out of it, and the anxiety made it impossible.

I didn’t realize that it wasn’t only the pain that created my anxiety (panic) attacks. Having my ovaries removed at the age of 38 caused me to have such a decrease instantly of the necessary hormones that my body relies for normal functioning that my body kind of flipped out. In truth, I didn’t expect much of a change because I had been in ‘menopause’ since I had started chemo in May of 2018. I was previously going through hot flashes and I had of course, not had a period since then. I hadn’t been very educated on how those hormones actually affect the body, and I’m still learning.

Because I was unaware of the side effects: Here is a general list of the symptoms of menopause:

-Vasomotor symptoms (a fancy name related to blood vessel regulation): Hot flashes and night sweats. This was the only side effect I was aware of. The only one I ever heard complained about and I felt I could blame on menopause

-Vaginal dryness and painful intercourse

-Insomnia- stupid hot flashes like to wake me up and very very often I cant go back to sleep either ever or for at lease an hour after.

-Depression, Anxiety and Irritability- just gonna raise my hand over here.

-Urinary Incontinence and increased urination- I’ve had increased urination since my two beautiful boys graced my womb and used my bladder as a trampoline.

-Memory Loss and Problems Concentrating- haha. This is the story of my life right now with ‘chemo brain’ and the nerve pain medication Gabapentin I take that also causes these lovely symptoms.

-Joint Pain- Like i need this, along with my autoimmune rheumatoid arthritis

-Weight Gain- so it seems women should decrease their daily caloric intake by 400-600 calories a day. Seriously? This explains a bit

-Sexual Disfunction (evidently you get less blood going to your vagina, so you know, your ‘not feeling it’, so your pretty ‘meh’ about sex)

-Osteoperosis- your bones become more brittle

-skin dryness and hair thinning/loss (I kinda lost all my hair, so remembering how thick or thin it was is not at all a concern of mine)

This is also interesting to me. If you have reached full menopause prior to 45 years old- whether naturally (which is considered a dysfunction) or surgically- you have some different factors as well to worry about. The body evidently uses these hormones to help with different parts of the body as well, and evidently, simply put, once you lose these hormones, your body then starts to age faster. Bones, brain, organ lining, endocrine system, truthfully, a lot of parts I didn’t know about-including the heart are all affected. Menopause is natural- but when you add another 10-20 years of faster aging caused by early menopause, then it does evidently increase the earlier risk of overall mortality. So, normally, adding hormone replacement therapy, is important and usually used, except in the case of hormone positive breast cancer patients who are trying to reduce their risk from a very fast aggressive asshole of a cancer. Grumble grumble.

When I first had my ovaries removed, I instantly began having about 5-6 panic attacks a day! It was terrible. At the time, I believed that it was due at first to the pain, then I thought ‘well, it was because of everything catching up with me emotionally’. I had gotten my ovaries removed 6 weeks after my last radiation treatment. My body was still recovering and I even needed an iron infusion before my surgery. Everything had been bam bam bam since my diagnosis. So, it wasn’t out of the realm of possibility for that to happen. At the next meeting with my oncologist, both he and his nurse practitioner took time to go through that with me. He said in about 3 months that it would regulate more and I should start having a decrease and feel better. I was both happy there was a physical reason and that there was an end in sight and sad that it would still be 3 more months, but mostly surprised that i had never heard of anxiety caused by menopause. It was explained to me that because the ovaries were instantly removed, and not gradual decreasing function in a natural way, then I would have all of the side effects to the extreme. Booo. But, hey, it beats cancer. I always remember this.

You might be wondering if there was another option other than ovary removal. Yes, there was. When you have had hormone positive breast cancer, you don’t want the hormones in your body to help fight any singular cell that might be somewhere from reproducing. So, in order to keep that cell a singular (and hopefully found and destroyed), you try to starve it so it doesn’t duplicate.

There are two types of estrogen suppressors, one for premenopausal and one for postmenopausal women. I happen to have a very knowledgeable and helpful sister in law who is a clinical oncology pharmacist who has all the scientific know-how necessary to help me along. She suggested that I get my ovaries removed so I could have the post-menopausal drug instead of the premenopausal. I don’t know the ins and outs of it, but, evidently, the combination is more reliable. My oncologist agreed.

After about 3 months, I returned to my oncologist who tested to see if I was in menopause and then they ordered my estrogen suppressor, called anastrozole. I was told to avoid taking it until my upcoming vacation because the side effects might ruin my vacation. Apart from the normal side effects of being in menopause, joint pain and nausea are also a risk. Luckily, I don’t notice any side effects from it after I did start taking it, but it did scare me a bit.

I still have panic attacks but they are much less frequent and I have learned a few tricks to cope along my way. I have had so many suggestions from others that I tried. Everyone is different and finding what works is frustrating. I personally need to just relax and have the panic attack happen. I mentally picture myself inviting the dumb panic attack and saying “come on in, if this is what i need, then lets do this. I’ll be just fine”. Then, magically, it disappears, usually without it even really happening. And I’ve also noticed that once you have one then your more prone to having another one for a day or two. So, I tend to self care at that time. Just reducing my stress, getting bonus hugs from my hubby, getting my mind off of things. For me personally, trying to work through my mental worries makes things worse, so I do things to relax me. It takes time to find what works but once you find that, its a priceless tool. Anxiety attacks are really awful. And its crazy to me that your body manifests your emotions to the physical in such a powerful way. It makes me step back and wonder what other parts of our physical self are affected by our emotions or outlook. Ive heard it said often when I got diagnosed that your outlook really affects how your body responds to the treatments. Ive heard about people talking nicely to plants causes healthy growth and talking negatively to plants causes them to wither. It also works the opposite way, too! My physical imbalance caused me to have such an emotional response from hormones. Yep, our bodies and minds are certainly connected. And I slowly improving in both ways. Connected as one.

The boot

I fell down the stairs about a month ago. I don’t know what I tripped on, because there was nothing there. Granted, my children love to just toss things down the stairs instead of walking down the stairs. We have an unfinished basement, so most of the time no one goes down there, just for laundry, the pool table (which is presently covered in assorted treasures), and my youngest basketball pop-a-shot. So, the most likely thing you’ll come across is laundry dirty clothes on the stairs. Just a few days before that, there was a sign on the door stating they weren’t to throw the laundry down the stairs, but to walk it down and put it in the laundry room. The sign must have come off, and evidently, if it’s not posted anymore, the same rules don’t apply. Sigh.

I was on my way down the stairs and I was carefully removing the laundry on the next step before stepping down. I know there wasn’t any laundry on the particular culprit stair because I had successfully kicked it not just to the next stair down but about 3-4 stairs down on the landing. Yay! Stepped down and boom boom crack boom. That’s me. The sound of me falling down about 4 stairs. Pain and fear instantly enter my mind. Fuck, damnit, shit! Oh crap, did I break my foot!? I felt that crack, I must have. Oh no! What does this mean for chemo?! Will I have to delay treatment? Fuck! If I delay treatment will I die?! Oh god, I’m gonna die because I fell down the stairs! Oh shit it hurts! Yes, half of this was in my brain, the cussing was out loud as well as my panicked tearing up in my eyes. I was stuck. No one was home. The boys had just left for school and my husband was at work and I don’t have a phone on me. Well, I’m gonna have to move my ass. I can’t stay here waiting for a rescue.

I inched my way up the stairs on my hands and knees and crawled over to the living room trying to find a phone. I see a cane I had recently acquired from my mother in law to give to my dad. Oooh! That might help. I somehow get up with the help of the cane and hobble around looking for a phone. I can’t put any pressure on my foot. It’s searing with pain. Truthfully I don’t remember how I got a phone but I do remember I made it to my bed and called my mom. It took me a while to get there and I had to try to compose myself in order to call my mom and not freak her out. I call her and try to suppress the panic. I tell her what happened and asked if she can come get me and take me to the emergency room. She says sure she’ll come as soon as she can. I then try to calmly call my husband. I reassure him my mom will come and take me as soon as she can and that he doesn’t need to leave.

The emergency room only took x-days of course, and I ended up going home on crutches, but was told I did not have a broken bone. I was surprised, but relieved. The worst case scenario is if it had been so broken they would have had to do a surgery which would have put off my treatments for sure, or if I chose to ignore the foot, I would have some awful issue where they’d have to rebreak it in the future. Eek. So, I was happy to not have a broken foot.

Crutches don’t work if you are alone half the day. You can’t go get water and carry it from the kitchen to, well, anywhere. Food, same thing. You need two hands for crutches taken, and since I only have two hands, I found myself trying to use one crutch instead of two. This doesn’t work well for the foot or for my armpit.

I ended up seeing my primary the next week about my foot, and she said she was still convinced that I had a broken 5th metatarsal. She ordered an mri, and I scheduled it for later that week.

The day of my mri, I woke up with some pain in the neck. Lol. No, really, I had pain, not in the back of my neck, but closer to my jaw bone. Strange spot. Oh well, on with my day. My mom came and picked me up and I got my MRI done. When I arrived home, I found my neck was hurting worse and I mentioned it to my mom, who stayed for lunch. She mentioned it looked swollen and brought it to my attention that it was on the same side as my port. This hasn’t dawned on me and I wondered if there was a connection. I decided to see if Dr. Google had anything on the subject, and sure enough, blood clots came up.

I tell my mom and we decide to go to the emergency room again! Yay! The Dr. immediately verbally wonders out loud if it isn’t a metastasis. Nice! Hadn’t thought of that. I mention a blood clot, which he dismisses because my face isn’t swollen. He runs blood tests and orders a cat scan. Hours later, he comes back in and says I must be smarter than him because it is a blood clot in my internal jugular.

I’m sure glad I went to the emergency room. He discusses the treatment with my oncologist team at Northwestern and they decided I need to take a blood thinner that I need to inject into my stomach every 12 hours. Yay! That is super fun let me tell ya.

My foot MRI ended up saying I had a bone contusion on my cuboid. Essentially, the inner part of my bone got damaged, but not the hard outer bone. I’m in a walking boot for a month or more. Likely more since chemo likes to make things heal very slowly. My foot dr. has emphasized that if I do not commit to the walking boot, that it can cause a spiral fracture which will then need to be put in a hard cast. Hard cast equals crutches. Considering I have my radical mastectomy in two weeks (including removing all lymph nodes in armpit) followed by 6 weeks of radiation, (also in my armpit)…..the threat had been noted, I will behave with the boot. The damned boot.

Oh, and my youngest broke his arm. He was being pushed a hammock and slid right off. Put his arms down and his left arm musta hit the ground just the right way. He’s in a hard cast for a month.

Stupid bodies. Why can’t they just be made of rubber?

I need Xanax..

Stupid feelings. I like to think I’m strong and “a warrior” but I’m just not. I’m just me. Magical things don’t happen when I put on my breast cancer warrior shirts and although I do have a sword (I’m a dork) and have a badass image of what I could do with one, meh….I can’t do anything except look like a fat bald chick trying to swing a sword like a baseball bat.

I’m the same way in almost every aspect of my life..just average. Don’t get me wrong, I like me. I try to be a good person, and once in a while I am successful at being funny. I am not epically failing at life. I’m no A+ Mom, but I’m not failing either (fingers crossed). My husband might even give me a solid B if I asked him to grade me. My grade for house cleaning? Meh.

Emotionally, I am also doing so-so. It changes constantly. I was really proud of how well I was doing at first. I was like, “Wow, I’m taking this well. I’m not crying, I’m just rolling with this, being calm and collective!”

Ha! So…then there are anxiety attacks. It’s not what I expected. I used to think of anxiety and I think of worrying. They were the same feeling, but as different adjective. Anxiety attacks? Sure, they are in movies all the time. A high stress time, like an airplane you’re in is plummeting to the earth. That’s when you have an anxiety attack. Ummm…no. Mine like to happen when it’s quiet and I’m either in the middle of relaxing or in the dead of sleep. It makes no sense to me at all. It’s not the only they occur. They have occurred during the day as well, but for some reason, my anxiety attacks prefer to occur at night when I can’t see them coming….very sneaky.

For many years, I had been taking Wellbutrin. It’s a ‘happy pill’. These pills would be more accurately labeled as “preventative pills to staying-in-bed-constantly- and-thinking-about-how-it’s-impossible-to-participate-in-life”. Okay, medically it’s called an antidepressant. I had taken it during my younger teenage years when I faced depression. I again started taking it when my boys were very young and I was stressed out too much from daily life and I wanted to quit smoking. I did quit smoking, but I never stopped taking it. My stress had become more manageable. I needed all the help I could get, and my short fuse had grown longer. Bonus!

I had regular physical checkup shortly after being diagnosed with IBC. Because my anxiety attacks were still gracing me with their presence, my husband encouraged me to speak to my G.P. about it. He even accompanied me because I feared I would have a panic attack driving. After showing her and a training nurse practitioner my breast (they had never seen inflammatory breast cancer in person), I left with a new prescription for Cymbalta. It worked differently than my antidepressant, but it also treats anxiety. I also left with some Xanax. This was the drug I would take every time I would feel a panic attack come. It was supposed to work quickly and then calm me down. Oh, goody! I was sincerely excited. Something to make the awful dread that washed over me uncontrollably, just shut up! Yippie for Xanax!

UPDATE: I did not stay on Cymbalta long, and I also did not continue to have panic attacks, thankfully. I stopped within about 2 months. I did end up switching back to Wellbutrin.

Goals

I have decided to list things I want to do in this life. Not a bucket list. That sounds like I expect to kick the bucket, which I don’t. Okay. Well, yes, I guess at some point I will. But, this is more of a life list. A list of things that are important, enjoyable and make me feel life the most.

These are for me. Not for really any other purpose. A place for me to hold onto those dreams and hopefully as time goes on, I can come back and check them off.

In no particular order:

Go out west and visit mountains

Climb or at least hike those mountains with my husband and two boys.

Visit the Appalachian mountains

Go to Alabama to visit my brother and his family

Drink too much and play card games till the wee hours

Visit my sister and her family in Arizona

Have an uncontrollable fit of laughter with my sister

Go to Europe, spend time in England and Spain and Scotland.

Go to New Zealand

Go to concerts.

Learn to play the blues

Lay in the sun reading books

Actually lose the weight I keep saying I will in this lifetime

Play music again.

Have grandchildren and spoil them

To go California go visit my longest friend

Go to Hawaii to visit my other longest friend

And of course, win the lottery to be able to do this. 😂

Road Rage, but with a cart

I was shopping with my husband one day at the grocery store. It was early in chemo treatment. I hate shopping, by the way. I dispise it. Especially grocery shopping. It’s cold, things are placed inconveniently in purpose, and there are people in my way. The only place I get road rage is in a grocery store. I write lists, and I stick to them. I hurry up as fast as possible and I get the hell out of dodge. If someone slows me down it’s irritating as hell. My husband makes a day trip of shopping. On his behalf, I have to say I feel most people do. Ok. Everyone else that doesn’t shop like me. If you go down every isle, your a day trip shopper. If you like to browse, your a day trip shopper. If you check unit prices and can’t make up your mind, your a day trip shopper. My time and sanity is worth more than the pennies I will save. That’s why I prefer to shop alone and of course I spend a fortune more when someone else is with me because they don’t stick to the list. Well, this particular day, I decided to be nice and join my husband and go grocery shopping because he loves it when I do. I really shouldn’t have. I was not up for it in any way. I was physically too exhausted to walk around, so I tried to use the cart, which helped a bit. I was pushing myself too hard and it was draining all the energy I had. This also happened to be the first time I went out with a head scarf. Not a wig.

I hate the looks I get from strangers. Nobody means them, and I used to give them as well. The second glances and stares as they try to figure out if you are going through chemo or not. Then, they try to make eye contact so they can send a telepathic message to you that they feel for you. I’m guilty of it as well. And there isn’t anything wrong with doing that, but it drove me nuts. And this was the first time I encountered it. It was emotionally tolling. I just wanted to not think about cancer while grocery shopping. Being reminded that I have cancer every time I look at a face isn’t my idea of fun.

Well, at one point my husband and I get separated. I stay in the same place because I have no energy to go carting around looking for him, we are both frustrated when we find each other, start arguing and I just start bawling. I ended up walking out of Walmart sobbing while he tails after me. I call my mom and end up talking to her wailing about how everything is unfair while sitting in the truck for the remainder of his shopping. On his behalf, he did ask if we should just go home and I told him to shop and he did indeed hurry up. It took a bit of time to sort out everything emotionally. I cried for the good part of an hour. It was obviously needed.

I made it a point to stop looking at peoples faces in the store after that. That sounds cold, but that’s how I feel. Once I grow eyebrows and hair back, I’ll look like everyone else and I’ll go back to my friendly self.

Chemo

Tomorrow is my last chemo. I’m so glad to be done with chemo as you can imagine. But, I had a couple people ask me more details about chemo recently. I never knew exactly how chemo worked before I had to go through it myself. Also, my youngest asked me tonight what chemo feels like, and if it feels gritty, haha. I guess I can share my experience.

First, I got a port placed. A port is pictured below

I didn’t look at these images before my port placement surgery and it’s a good thing. It grossed me out a bit and I’m sorry if it does for you, too. During my surgery, I was awake unfortunately. They gave me something, which they compared it to the same type of medication they use for scopes or colonoscopies, but it didn’t affect me the same way at all. (I’ve had both done in the past). For one thing, I remember everything, and for another, I didn’t forget it later. Fortunately, I did not feel pain and it wasn’t that big of a deal. I truthfully don’t remember much pain afterwards either. I do recall at this point my breast hurt badly constantly. I do remember that pain. But, that was stupid cancer.

I was given some lidocaine to place on my skin about 20 minutes before my port is accessed. This is the term they use to pretty much say they are going to stick an I.V. into it. I remember at first it was tender. It got better over time. Once they poke ya, they cover it with tape, take a few vials of blood and send you one your way to chemo. Chemo was in two different parts. I had a total of 6 months of chemo. The first three months were a few types of chemo combined. FEC, to be exact. The second three months were just one chemo drug, Taxol. So, the chemo treatment essentially is called FEC-T. During the FEC, I was able to get a private room. This chemo regimen is one of the hardest there is out there, and it also takes a while to receive it.

I get comfy and take off my shoes and lay in the bed or recliner, depending on which treatment area I was in. I grab my blanket my friend Kim crocheted for me, my iPad, or whatever and I just relax. The nurse comes asks me how I am that day and how I’ve been since my last treatment. They always wait until they get my lab results back before starting any medications. The labs are pretty much your basic yearly labs you’d get at your annual blood tests from your primary. Complete blood counts, making sure your liver enzymes are good, etc. Essentially, they are trying to make sure I’m healthy enough for chemo. In the meantime, I always get an I.v. Bag of fluids

Once I’m cleared they give me pre-meds. On each type of chemo, there are reactions that are associated with that medication that they are trying to avoid occurring to you. They are giving you crazy chemicals that your body will try to reject. For the FEC, I got anti nausea drugs and a strong steroid. There may have been more, but that is what i remember. They are either give by i.v. drip, or the nurse pushes it in slowly through a syringe she twists onto the end of the i.v.. The pre-meds I have for the Taxol are a steroid, Pepcid ac, and benedryl. The benedryl makes me feel exactly how you can imagine me feeling, I feel like I’m drugged. Truthfully, it makes the whole thing a big more tolerable. But, I could never expect to fully concentrate on anything either. Conversations are not my forte after they push the benedryl.

After the premeds, onto the chemo drugs themselves. The nurses wear special gowns when handling chemo drugs. I guess if they leak, some of them will corrode tissue. Nice, just what you want in your veins, right? The taxol is pretty uneventful. I do recall the first two sessions the nurse sits with you for 20 minutes to make sure you don’t have an allergic reaction. It’s most likely the first two times in that first 20 minutes I was told. I did not. The FEC, only one of the chemo drugs was an I.v. Drip, the other two were pushed through syringes into the i.v. Those were awful drugs. All kinds of awful I remember feeling dizzy and wierd feeling when those were pushed. Especially the one nicknames ‘the red devil’. It’s just no fun. I could always tell when they pushed that. I’d lay back and think positive thoughts. Pretend I’m elsewhere. After all the medications are done, they remove the i.v. From my port, place an vandals and I’m done. Home I go. And I wish that was the end.

But, no! I have side effects to go through. Granted, everyone is different. I had a rough time with the FEC, and friend who is going through this with me she had a tougher time with the taxol than the FEC. That is unusual though. But, again everyone is different.

My FEC side effects. Sigh. Boy, that was a fun three months of my life, I must say.

First chemo treatment was the worst one. I kinda went nuts. Ok. No kinda about it. I went nuts. I crawled. I couldn’t stop pulling at my clothes, etc. I was twitchy and I don’t remember huge chunks of time. This was the same for my second chemo as well. We did finally realize the issue. I was sent home with an additional prescription medication to help with the nausea. Which was bad. Compazine. This medication is an anti-psychotic. It’s used for nausea because it’s good at making it go away. But, for me, it was a psychotic, not an anti-psychotic. I got to feel what it’s like to be off your rocker, thanks no thanks. That was awful. And, to boot, I still felt nauseous. Once I got rid of this drug, the psychosis went away. That was a huge thing improvement as you can imagine. The nausea, I found a natural herb helped instantly with this and helped me to sleep too. That was priceless. But, I did have a couple side effects that didn’t just go away. I had a headache that was always there for months. It got more and less intense, but it didn’t resolve until I was well into the next type of chemo. I had stomach pains. I have IBS, so I am used to abdominal pain, but this was something different altogether. Cramping pain that just felt like poison. I felt poisoned. I essentially was, and it was physically evident. I had a rash on my neck that appeared one day soon after my first chemo. It stayed there for about a couple months, slowly fading away. Fatigue. There was something special about chemo fatigue. It’s like if you have to sludge through a swamp wearing bowling balls with a house on your back. It is pretty awful exhaustion. Regular life is not possible. It starts to get possible closer to when you go back, then you have to get chemo again. During the FEC, I couldn’t do stairs for about a week and a half after chemo. It was hell doing anything. Just going out to dinner kicked my ass. I was useless and had a hard time with that in and of itself. When I switched to Taxol, I felt less poisoned and less exhausted at first. It builds up though and doing work is still exhausting and I have to do things in little morsels, but It’s not impossible.

No hair. I know this is the first side effect that most people think about with chemo, this issue didn’t bother me much. It bothered me at restaurants when i couldn’t just brush past people and the sympathetic stares like I could at stores. For a good while, I was sure to wear a wig when going out to eat. I eventually got to the point where I didn’t wear anything and I just let me and my scalp be us. That was freeing, it’s summer and I decided my comfort was important, and i shouldn’t be uncomfortable because I might make someone else uncomfortable around my bald head. That was silly and I felt proud of myself that I could do that. Then I hit another bump. I hated looking in the mirror and not recognizing myself, I see cancer. I don’t see myself and that’s pretty depressing. So, I decided to start putting on eyebrows and makeup and I needed professional help with that. (Thanks again, Kelly!) I also started wearing headscarves again. But, I did it for me this time, not for anyone else. I loved not shaving though. Even now, I have to shave so much less. I haven’t even shaved my legs in months and the hairs are so thin and light that I’m still not going to do it till I have to. I will stay modest and just say that every hair falls out. Body hair is all good with me being gone.

There are also nosebleeds. They started for my second part of chemo, with Taxol. Randomly occurring and every time I had to blow my nose. Congestion was common also for me with this chemo, so unfortunately, I had nosebleeds almost daily.

Menopause! Yes, this stinky side effect was a mixed bag. Sure, I haven’t had my monthly visitor since May. But, I also have a ton of hot flashes, followed quickly by awful cold. It is as described. Out of control and you just want to take off all your clothes and jump in ice. I can feel it coming up the back of my neck and it crawls up and across my head, it’s likely some blood vessels opening or having some reaction, then the sweat starts immediately. I feel like my head is on fire. It’s so awesome. This is the biggest reason I don’t often wear one of my wigs. Maybe if I went through chemo in the winter instead of the summer? Who knows. But, it is not welcome, and because I am hormone receptor positive (in English this means that both estrogen and progesterone both feed my cancer), I am going to get my ovaries removed, so menopause will have to be something I get used to. I do, from what I understand have it more often at least and possibly more intense than women going through it naturally. Fun times, everybody! Oh, and I can’t take hormone replacement therapy for obvious reasons.

Last but not least, I have neuropathy from Taxol. Neuropathy is numbness, sometimes pain, and some people even get tingling, in your extremities. I’m actually pretty lucky because most people I talked to got neuropathy soon after starting Taxol. I didn’t get it until my 9th infusion. 9th out of 12 infusions. That’s pretty good! And I only got it in my fingertips! Yay!

I’m so happy to be done with chemo. I will miss not shaving, and I will miss taking 5 minute showers, but that is about all I’ll miss from chemo. This will soon be a memory from my warrior days.

Why I’m lucky…..

I consider myself lucky, believe it or not. I know many wouldn’t consider me to fall into that category when I consider that I have this awful cancer. But, it could be worse. I am a stage 3 for one thing. In case you don’t know, there are 4 stages of cancer. It goes from best to worst. Stage 4 is where the cancer has spread (metastasized) to a different area of your body. I am a stage 3. It’s not the greatest, but there is hope! And that is really the only thing I can ask for. A chance to fight. A hope for remission. One out of 3 women are diagnosed with stage 4 when they are diagnosed with inflammatory breast cancer. I, my friends, am lucky.

My luck doesn’t end there. I am lucky because my oncologist is Dr. Massimo Cristofanilli. If you google inflammatory breast cancer, you will see things come up time and time again. One, of course is Dr. Cristofanilli’s name, picture, research, etc., another is MD Anderson’s Morgan Welch Inflammatory Breast Care Clinic, the first Clinic dedicated to only IBC. This was started by Dr. Cristofanilli. Also, you will run into the IBC Research Foundation, started by a former patient of his. He helped start Erase IBC, a foundation for awareness. He started another Inflammatory breast care clinic in Philadelphia at Fox Chase. He also started the Inflammatory Breast Cancer International Consortium, where researchers, oncologists, surgeons, radiologists, foundations, etc, come together and help further the understanding of this complex cancer. He’s pretty much the guru of inflammatory breast cancer. He literally is the best IBC doctor in the world, and he’s my oncologist. So..yeah, I’m pretty lucky.

I am lucky that I have such support. This is something that I have been blessed by God with. (I am nearly on speaking terms with Him again). My husband has been making sure I rest when I get a bug up my ass to just get things done, and I push it. He works so hard at his job as a steel worker, extra even, because he’s trying to makeup for my lack on income till disability kicks in. Despite working 60 hours a week he picks up the my slack with so many things. Helping drive me to my appointments, stepping in with taking the boys to cub scouts and helping with homework and extra housework. He’s quite the catch! But, the best thing he helps me with is emotionally. He keeps me balanced somehow. If I’m having a good day, I over do it, because I want to take advantage. But, I end up often regretting it not soon after starting. There is other times where I become a log on a bed. I rest of course because I need it. But the more I’m in the bed, something creeps into me. I feel useless, or I feel hopeless. I feel detached from the life I am used to living. Just day to day what makes me who I am: the wife, the mom, the cleaner of the house, the grocery shopper, helper of homework, yard maintenance, organizer, etc. My new identity has changed. I am the cancer fighter. I am the ‘warrior’. I have a hard time with this identity. I try to brush it away often, and try to resume normal life, but when I ignore it, my body reminds me very quickly. I have to take care of myself so that I can one day be able to care for them again, properly. He’s my handsome hero. He keeps me balanced in so many ways. We go off balance often, truthfully, but, less often as time goes by; and we always find our way back.

I’m lucky for my sons. I have two boys. One is 10, the other is 9. They are both helpful. The oldest has taken the role of helping me with the laundry. Laundry in our house is a big task. So, this is a big help. My youngest is helpful with pretty much anything I ask him to do. Mostly little things like “Can you get that, can you help me with this, can you take out the garbage?” etc. They are old enough to understand, I believe, a lot of what having cancer means. I can have more mature conversations with them, as well as moments of tears. I am not alone in this journey, and for that I am lucky.

I’m lucky my parents live nearby and they are willing to help me in so many ways. My mom watches the kids every time I have to travel to Chicago 1- 1 1/2 hours away for a treatment, or a test or an appointment. She helps me with the house, vacuuming, dishes, bathrooms, laundry, etc. Shes there for me emotionally and she’s just been incredible. I’m so lucky. My dad drives me to chemo half the time and he even restrains himself and drives slowly to calm my nerves. (This takes some doing for him, as I believe he was meant to be a race car driver). He helps out with whatever he can, enjoys coming over and visits me whenever he can, and he even did the dishes one day!

I’m lucky to have my siblings. They are across the country in different directions, but they check in with me often. They make sure to know dates of appointments, call me for results, and they’ve been really supportive. It’s been nice having them be more involved in my life. Both of them have made trips up here to visit me since my diagnosis. How incredible of them to do that. My brother had even flown me and the boys out to visit them for a few days and that was so awesome. Best gift. To relax and see him and give us a bit of a vacation. I’m lucky to have him as my brother cause he has his own sense of humor that I can’t get from anyone else and I love him. Growing up we were two peas in a pod. His wife is very close to me too and it was great to have sister time with her. I’m lucky.

I’m lucky my sisters in laws are awesome. My mother in law got diagnosed about 3 months before me with stage 2 breast cancer. (Not inflammatory). I was planning on having her come and stay with us during her surgery recovery and radiation. I was already going over and helping her clean and go through things and I was her main person for these sorts of things. My sister in laws don’t live locally but we do. Plus, I’m pretty close with my mother in law and don’t mind helping her of course. I am lucky that they were able to take care of her during her treatments. I’m sure it was rough on them traveling to care for her. Im glad they were able to. I was in no shape to.

One of my sister in laws is a clinical oncology pharmacist. I’m lucky that she is. She’s helped me with everything to helping me get hooked up with Dr. C, to helping me with small questions about side effects from chemo. This is her specialty, chemo. And I had some things through my chemo journey that have came up that she really helped me with. She’s also become close to me, which, truthfully, she wasn’t before. She’s become someone I can talk to about pretty much anything now. It’s really nice. I’m lucky.

I’m lucky to have Bev, who is my cancer sister. She also has stage 3 IBC. She is one of two people I have met in real life with ibc, (the other one has been doing well for, I believe 8 years, and she now works for dr. C.) I met Bev in chemo one day. She overheard me telling the nurse that I had to go above and beyond and get the special and rare cancer. She asked me what type of cancer I have, and that was it, we instantly bonded. She is one week ahead of me in treatment. What’s the chances of finding someone literally in the same boat as you? I don’t know, but, even with having the worlds ibc guru at Northwestern, I haven’t met anyone else with it. It’s that rare. She is great. We get along well and we are scheduled for our mastectomies one week apart. We get to compare side effects, compare treatment plans, compare what our doctors say, everything, we are true cancer sisters. She calls me her bosom buddy. I’m so lucky to have her.

I’m lucky for my friends, too. People who have stepped up and send me cards or call me, or even hang it with me. There is a small handful who have made it a point to check in on me. It’s not a bother, it’s wonderful. I love them, and their kindness especially during this time of my life, means so much and will not be forgotten. I’ve received so many cards, and I’ve failed to send thank you cards back. I will. But, if your reading this, know it is not unnoticed and it is so appreciated. It touches my heart, the gestures of kindness. So simple, I guess, but it means so much.

I’m lucky. I might have this rare shitty cancer, but I feel lucky because of my peeps. From everyone from my oncologist, my catching cancer before stage 4, all my friends and family, to the little cards and calls.

I’m so very lucky. And, thank you.

Crushed by the lawn mower…

Not physically thank goodness, but emotionally. It’s a bit strange sounding I know. But, it’s how I’m feeling today.

I was advised by a friend of mine (she’s really a second Mom to me), whom is also a writer, that I should write about these small life moments affected by my cancer. Originally, I felt a great responsibility to just share info about my cancer and all the facts. The important things are the scientific and medical news I can share, right? But, I’m learning that this journey isn’t just about medical stuff. There is definitely an illogical and strictly emotional aspect to it. And it certainly is affecting my life. This is just one of the many ways…

So, I’m sure your wondering about the lawn mower.

I really like mowing the lawn. I couldn’t sleep well last night. (I never can the night after my taxol chemo because they give me steroids that make me wired). While I was staring into darkness my mind was actively thinking about how I was going to mow the lawn the next day. I have a large yard and it is not easy to mow. I’m in the middle of the woods and we have just under 2 acres. It is hilly everywhere and it’s pretty much a nightmare in the fall with the leaves, but it is a fun challenge in the summer for me. Except, my riding mower broke. We have a push mower, though. It’s been a couple weeks since we mowed and I knew it would be a challenge to mow because I get easily tired. But, I was so excited!! I figured I’d only do the important parts: the clearing at the end of the road, the area around the kids trampoline and the small section around the shed, the parking area and the front yard. Ok. So that sounds like a lot more when I wrote it down, but that’s seriously only about half of it!

I changed to shorts, and a tank, strap on my trusty mowing shoes and throw a bandana on my peach fuzz head. I make a huge water for myself and eat a banana on the covered porch. I’m stoked, it’s a beautiful sunny day and it’s gonna look so much nicer when I’m done. I love the fresh grass smell and I love yard work. (Minus leaves. Yuck.) I go out and fill the tank with gas start it up and get going, it’s cutting great. I mow a few minutes and notice I’d rather stick to a small section rather than walking so much. Getting tired already. That’s fine. Pulling this mower across this terrain that’s a bit bumpy is doing a number on my back, I’m gonna move to a flatter area. Okay. This isn’t much better. Going towards the trampoline area which has been ignored since the last time on the mower because it broke. It needs to be done, this will be motivating, crap. I don’t know what these strange weeds are and I don’t want to get some strange hives or something. I think I’ll just mow in all directions from me making a path like a fan. Back and forth. Didn’t see that big stick. Crap. Stop mower turn it over and clear underneath. Flip back over and start it up. Back and forth. Fuck, this is hard work. But it needs it, I need to keep going. Exhaustion. Dizzy. Push through it. Then my brain argues saying I can’t do that. I need to watch it. I argue with my brain cause I want to mow so bad. I keep going. I get dizzy. I can’t possibly it keep going. I turn off the mower. I need to sit. I wobble to my glider swing about 10 feet away. I flounce down and realize this isn’t going to work. I m panting heavily and the world is spinning. I barely touched the lawn. I couldn’t even mow enough to make it worth going in and recovering and going back out. It would never get done at this rate.

I go inside and my frustration and disappointment get the better of me. I feel the lump in my throat and my tears well up. Fuck. Damnit. Not the lawn. I love mowing. I feel normal when I mow and I feel like it’s good for me physically and for my soul to be out in my beautiful woods and getting some healing healthy exercise while beautifying my home. Damnit why did the rider have to break. Shit. Today is my good day, when I have the extra energy boost from the steroid in me and I can get things done. I only mowed for 15 minutes and almost passed out. I must surrender that I can’t mow again till chemo is done. By that time, it will be mid October and the leaves will be falling and I can’t win that battle with a healthy body and a working riding mower. So, I have to give up on my yard for the rest of the year.

This is the first thing that I have had to completely give up due to cancer. I have had times where I can’t walk up and down stairs for a week and a half during my FEC chemo, but I knew I’d be able to after that. That was temporary. And that was for laundry. That brings me no joy. Lol. Mowing does.

Sure, my husband will now take over…when he can. He has so much on his plate and I started mowing originally because it was harder for him to get to it then me. And I realized I enjoyed it and that was that.

I called my husband crying. I hate crying, and I hate feeling weak. But I also know that I needed him. I needed him to know why the dumb lawn wasn’t going to get cut. I needed him to tell me if there was a magical way of fixing the rider, or if there was no hope. I needed him to tell me that I was being silly. I knew I was. I just needed him to explain to me how silly I was. To hear it so I got better perspective I guess. Why was I crying because I can’t mow the lawn? How is that important in the big picture? It’s not. But it still hurt. My wise and loving husband reminded me that I am fighting a war and I have chemicals inside of me that are poison. He sweetly said that I may not be able to mow the lawn but I am still able to be be an awesome wife and an awesome mother and I am in the process of kicking the shit out of a rare form of cancer. He also made it clear to me that even if we somehow get the best rider in the world before the end of the season that I am not to use it. I have conserve my energy to fight cancer. This is both true and wise, but also a bit annoying because if we do get a super awesome mower I totally want to play mow the lawn. But, he is right. And, I felt better talking to him.

I feel this blog is both the silliest blog I can think to write about and the most real. I’m torn about throwing it out there, but I am going to do so anyways. There are so many people fighting cancer and Im sure every one of them has a thing or two that they really felt emotional about having to stop doing. It’s the little things that make up life and right now my little thing is my getting crushed by a lawn mower. Read more

A warrior Makeover

Everyone whose hair is going to fall out due to chemo should have one.

I had long hair prior to it all coming out due to chemo. My oncologist suggested I have it cut prior to my hair falling out on its own. Not a bad suggestion. Keeps my vacuum and hair drains from being thrown into overdrive and clogging up. Sure, why not. I’ve always, ironically, donated my hair. I grow it long, get sick of it, and donate the standard 10 inches to locks of Love. I’ve done this for years. Because of this, I have always gone to a fancy spa and gotten my hair cut. Why? Because it’s a free haircut when I donate. So, why not?

Well, my husband suggested I go to a friend this time for my haircut. So, I messaged her and told her the situation. She said she didn’t feel comfortable charging me and said she had an idea instead. She said she would cut my hair, of course, but would also have a professional makeup artist and photographer. She asked how I felt about it to which I replied it sounds fantastic but I’m not sure I understood what was happening. That’s when she used the words a warrior makeover or session. That I would get my makeup done, and my hair done and have the photographer take pics of it. It sounded great me to and it was making me excited thinking about getting my hair cut instead of having dread and depression. Having your hair fall out, especially as a woman for something super crappy anyways, is indeed depressing. But, just the idea of having a makeover sounds fun. Having my makeup done sounds great. Being pampered sounds luxurious. I loved the idea instantly. And it touched my heart that she was going to put something like this together. Truthfully, she wasn’t really a close friend. She was within a circle of friends that I have. Someone I’ve seen a large gatherings. Sure, we’ve talked, but to put this love out there for someone you didn’t know very well is awesome indeed. Well, she’s my friend for life now.

Anyways, the day of was very special. My husband and Mom joined me. I must say first am foremost that the dynamics of that room were great. I had a great time. Emotionally I cried a few times. Touched by the generosity and outpouring of love from my angel volunteers.

First, I had the makeup artist apply my makeup. It was fun. She used airbrush makeup which I always wanted to try and she made me feel beautiful. She made sure I was happy and was super sweet. She left me with extra tissues for my random tears and extra lipstick. I felt beautiful. The next step was my hair. We agreed ahead of time to be badass and get a Mohawk with the inflammatory breast cancer colors of pink and orange. It turned out great. I was so nervous about this. The process took time and we just enjoyed one another’s company laughing along the way, with my hairdresser sharing one hilarious story after another. All the while, the professional photographer was just snapping pictures . Nothing posed. I liked that. It’s nerve wracking enough to feel like the center of attention and getting such a dramatic change. She quietly and smoothly joked and snapped pics.

Now, this is where it got a bit more interesting You see, while Jess, my hairdresser, had been describing in our texts what her vision do the day had been, she mentioned that she thought it would be like where I’d be all isle of wonder woman. I told her I though that was great because I have a fascination with swords, and I even have one. So, I had let the cat out of the bag already. My husband packed the sword that morning while leaving the house. The photographer caught wind and it was all over. I had to pose with my sword after my new warrior makeover. I am a secret dweeb who like swords, but I didn’t want the world to know this. Well, it’s all over now. I was instructed to look bad-ass. But, I could only giggle at myself. It was fun. We were by a roundabout with plenty cars driving by while I’m standing in the middle of field holding a sword. All I could do was giggle.

It was empowering, pampering and loving. There is something ceremonial about shaving your head for chemo. It can be somber, heart breaking and sad. If you have a friend do it with you, it can be less lonely and can strengthen relationships.

But, I must say, my own Warrior Makeover made me feel loved, blessed and ready to face the challenge ahead. It gave me confidence. It made me gain friends…beautiful selfless women who reached out and held me steady. It was unexpected and beautiful.

I believe everyone who has to go through chemo hair loss should have a Warrior Makeover. Not just breast cancer women, but anyone. It should something that catches on and is done. I shouldn’t be the only person who had angels during this normally traumatic experience! Share the idea!