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.

Happy Fucking Birthday to me!!!!

Well folks, Im 39 today! The picture in this blog is the view from my bedroom where i am currently typing in comfort from. My husband isnt much for decorations but he knows I am. He is an amazing man and Im lucky to have him.

I woke up this morning and instantly wanted to blog. I wanted to share my joy with whomever wanted to read it. Because I realized something. The average time frame between diagnosis and death for IBC was 15-18 months just prior to 2006. It’s been about that time since I was diagnosed. 2006 was just 13 years ago. It’s amazing to think that if I had been born at a different time frame in all of history (or least prior to 2006), I would not be alive to tell you all that “It’s my birthday, Bitches!!” It’s just incredible to think about that. I actually think about that a lot. I’m laying here in bed with my new leg and back pillow wedges my husband got me with my new weighted blanket wrapped around me. I am going to go kitten browsing later. (I crack myself up). So, maybe I’ll meet a new little fuzzy friend. Currently, my children are sleeping and my husband is decorating and wrapping a ‘few’ things. Yesterday, I made two cheesecakes and homemade cinnamon rolls for breakfast and dessert later. I will make my crab pot pie later which I’m super excited about. Yummy! I have failed in years past to mention that I do not want to clean the house on my birthday. I resent it and so that was literally the only idea I could think of, so pat on the back to myself on that one. Did i mention that fabulous hubby is picking up the house too? He’s doing a fabulous job so far! I’m happy aready! Blanket, pillows, kitten, house cleaning and decorations! Yay!

I love birthdays. I feel it is everyone’s personal holiday. I try to plan and treat myself on my birthday. I worked one day ever on my birthday because I completely forgot to put it as a vacation day, and I begged to go home at one point and my boss let me leave. My brother has his own company and on their birthdays, they get the day off with holiday pay. Love it! Most people I know don’t even celebrate it much and go to work and treat it as any other day. I feel these people must be depresssed or they hate getting older or some shit. That’s dumb. They are doing it wrong. It’s YOUR special fucking day and no one should give more shits about it than YOU! Why? Well, because you are ALIVE! I celebrate me and the fact that im alive. My birthday gift every year truly already happened because im there to celebrate it. That’s what it comes down to. I celebrate my being alive, and damnit, I fucking love life. Love it, embrace it! Let go of any ideas of what you should have accomplished at that age. Fuck that. Life truly is a gift and it can be taken away at any moment, and you know what?! It WILL! We will all die. But, today, I live. You live. Today, its my motherfuking birthday, bitches! And I will spend it snuggled with love from my family, and friends (and possibly a kitten). A few friends and I are gonna go paint ceramics at a little local shop that allows you to just walk in, pick out a ceramic, paint it at a table (oh, and they have two resident cats, too. Bonus!) drink wine if we want and just relax. Yay! About 18 months ago, most of these friends weren’t as close. Cancer brought us closer. It’s amazing the blessings through this damn cancer ordeal that have occurred. I love this adventures called life and “Happy Fucking Birthday” to me!

IBC is different

There are many ways that IBC is different than other breast cancers.

  • It’s is rare. Only accounting for between 1-5% of all breast cancers
  • It is the most deadly. Although much more rare, it disproportionately is the deadliest. It accounts for 10% of all breast cancer deaths.
  • Treatment will always be tri-modal: this means that there are three treatments necessary for IBC: chemo, surgery, then radiation
  • It’s a harder chemo. Not only does ibc automatically mean chemo, it is an aggressive cancer, so an aggressive chemo is necessary.
  • Radical modified mastectomy is the only surgical option experts suggest. While other breast cancers can be treated with lumpectomies, or skin sparing mastectomies, IBC can only be treated with a radical modified mastectomy, which removes all of the breast tissue, two levels of auxiliary lymph nodes, as well as the trying to get all of the affected skin.
  • Radiation treatment is more intense. Because IBC is resistant to radiation, radiation is cranked up, the radiation time is increased, and the radiation area is larger because of the skin involvement. Some experts even suggest twice daily radiation.
  • One out of three diagnosed will be already at stage 4 with distant metastasis. This means that it had traveled to another part of the body outside of the breast and lymph node area. IBC tends to travel to the brain and bones.
  • The earliest you can diagnose IBC is a stage 3. Two-thirds of patients are a stage 3at diagnosis, because the cancer has skin involvement.
  • The reoccurrence rate for IBC is much higher than more common breast cancers. This can be as high as 50%.
  • Younger women have a tendency to get it. The youngest I personally know was 27. I was 37: but the average is 52.
    Women of African lineage are disproportionally affected with IBC compared to other breast cancers.

While a lot of this is bad news, it is really good news that there is progress happening. There are clinical trials for inflammatory breast cancer, clinics, research and drug development. The overall survival has changed from being a death sentence to patients seeing complete responses and even some women living 20 years since diagnosis and still having no evidence of disease. You never know what the future may bring. Your story is different. You are different. And although I feel it is important to educate and share this information, don’t ever feel that there isn’t hope. I truly believe there is hope. Remember, statistics are based on past studies, which especially in inflammatory breast cancer’s case, means a longer history past. IBC is rare, and so it takes longer to gather the data.

For me, having this information gives me a stronger fight inside. I’m gonna be the woman still spreading IBC love and awareness in 20 years. You just wait and see.

Photo by Christopher Rusev on Unsplash

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.