It’s been awhile. No real reason other than I haven’t felt I had much to say other than
Blah blah blah cancer
Thank you family and friends
Oh yeah, we moved. It’s been tough to have such a big change and I miss my husband immensely!
I am tired.
I am tired.
And even we I say I’m fine and convince myself of it, I am still tired.
I want to exercise but also want to get my laundry put away and neither is getting done. I feel lazy but know it’s not that. Yet sometimes I beat myself up for it.
I’d like to eat less meat and more whole foods. But changing one’s lifestyle with little energy, little infrastructure and lots of yummy crap around makes it a challenge. Oh and I’m tired and my family is busy helping me. We are all doing well. The best we can. Often over and above in the case of my family. I just always want more I guess. Not in a selfish way i don’t think. Just in a way that fulfills more without asking more of people who will probably even find a way to give. Like getting to church regularly or finding the energy to corral E or K in the car more often and still having energy left to take them some where, forget cleaning up after. No, I want to be able to do that too. Do you know how hard it is to make and leave a mess for someone else to clean or to just sit there and stare at you as a reminder of your inabilities. It sucks.
My kids are potty training and are angels at daycare but defiant ones testing my boundaries and they have found that, yup, she’s tired. If they just push me a little it doesn’t take much to ware me down and the one thing that is most important, being consistent, is something I am actually incapable of doing. It’s really hard to receive so much help. And even though I know I’m not, I can even feel a failure at times. Regardless the help is greatly appreciated and often necessary. Other times “help” offered is not helpful though and then I turn it down and feel bad for not accepting. Or i accept and these times I’m speaking about are the times when I get upset because the help ends up turning into more fatiguing times rather than less. Or I am kept from other important but less desirable chores getting done because the window of time or length of time spent with the “helper” is too long. Do you know how hard it is to say to someone, sorry, I LOVE spending time with you and maybe you even live far away (or close by) but it is extremely hard for me to hang out for greater than 30 mins-1 hr blocks of time because it wipes out for later. Some people just don’t understand.
One thing I am struggling with is how to be grateful but still express what need or sometimes even knowing what I need and sensing my limit and available energy because every day is different. Something about a gift horse yet keeping ones own sense of self worth or at times privacy and independence. This is one balancing act that is further complicated by the juggling of all the emotions and feelings of others. Communicate this way to that one. Be rude or lie to set boundaries with this one. Wrap it up in a bow or just be assertive and truthful and for some deal with the repercussions of saying no or making a different request. Run the risk of insulting someone who cares for you, who you care about, when you can’t care for yourself is difficult. It’s always on my mind and often because I want to do things that overextended my true capabilities and limits.
I feel like people must think, why not hang out for 3 hrs and than go do something or nap later, they may think to themselves. Or: don’t you live with your parents, can’t they help you. . . well ya know what. . . I always feel I owe people an explanation. I don’t. It’s hard enough to say no to myself so when others make it hard to say no OR and this is a biggie I perceive they will it becomes emotionally exhausting instead of physically so.
Your life has challenges. My life has challenges. Your neighbors, the grocery store cashier, and your dentist, they all have their problems. But me, I’m living mine and what I realize is, my life will just never be the same. (Duh, u might think) well yah but just as a review for those of you who don’t know or remember, other than a miracle, my cancer is medically documented as incurable. This is NOT the part where you feel bad for me this is the part where you UNDERSTAND that even if I find a medication that gives me a “no evidence of disease” (NED) status, I will be on and off (mostly very “ON”) chemo for the rest of my life. And while I acknowledge this is my choice (to be on chemo verses not). . . it still sucks. And well, I’ve never been a gambling kinda girl but given MY unique situation (not your mothers, neighbors, or someone else) lots of reading, recommendations from various processionals, “advice” received solicited or not, and praying, this IS what I feel is best for me. I wish things were different but they’re not.
I have to “work with what I’ve got” which by the way is a lot of good stuff! It’s just that all the losses I am grieving over seem to get in the way sometimes to enjoy and bring my focus back to the good. And even though I can intellectualize that many things I feel guilty about are not my fault and the things I feel bad about not getting to or my continued lack of presence or communication with extended networks of folks, even those not so extended, I still feel bad that i don’t have the energy to do so. I feel so badly because i want to do so. I can intellectualize that it’s not my fault and maybe others do understand or that I am not burdening them, but i still can’t wrap my brain around these thoughts fully yet and buy into them yet. Therefore i find myself feeling apologetic a lot. I know that I need to make adjustment my expectations but it’s hard when you see your family tired, or burdened with extra stress, or so i perceive and to not want to push harder so they can be relieved some too. It’s difficult to ask someone point blank “please leave the house” because even though I just napped I need some quiet awake time before my kids wake or so I can handle them after daycare. My visits with people are needed and wanted but can run too long sometimes.
I digress, how do single parents do it!?! Handling twin boys who are almost 2.5 is difficult enough for a healthy individual, I can see it and I know it, but for me sometimes I feel so inadequate that they will become such brats or loose sight of the bigger picture in a tired, worn down moment, and feel like I am the vulnerable one, not my children. I think it’s one of the worst feelings I’ve ever had. And if anyone else cares enough to admit this experience, even if only to him or herself, I think you can understand where these moments of crumbling confidence & feelings of weakness come from.
Luckily I am not a single parent and my husband who is able to stand as a rock for me (but who turns out is also only human and is not so dense that he doesn’t experience his own challenges too), is an excellent role model & participant in our boys play, learning, manners, and helping them to following directions. The last 2 months of him traveling every 2 wks on average to be with us for 1-3 days at a time before needing to return for week were more difficult than I ever could have imagined they’d be. I’m so glad that he’ll be with us full-time after moving here by the end of the month. It’s a light at an end of a tunnel that is currently keeping us both grounded a bit better than not having a timeline in place at all. Although it’s only a few more weeks and we both have other excellent support systems,
each day still feels long lately.
So today I write to “you” who ever you are: a concerned friend, a loving family member, an acquaintance, former co-worker, or neighbor, hs or univ classmate in touch from fb, or a stranger who was referred here or stumbled upon it. . . today, I write to you not from a place of learning to live with cancer but learning to live with the consequences of treating it and with my goal and my healthcare team’s goal using all conventional and non-conventional methods I see fit and personally appropriate to stave off my cancer, to live: as long as I can live well. Each day this is a challenge. Each day despite the politic and homicidal strife going on in Syria, despite great joys of pregnancies & new babies arriving of friends i care about, joyous engagements & weddings, despite the beautiful smiles of my two adorable and very smart boys, despite hearing of a young boy and father of four locally who also have stage 4 cancers but may be “worse off” than me. Just as you do, I have my own challenges. I am not wallowing. I am not ignorant to the rest of the world or uncaring. I am just very consumedand not by choice with dealing with my own daily and sometimes hourly challenges. I care about others, I just literally don’t have time to address them like I wish I could.
I am not the same person I was. I am still great but not the same. I am a different version of me trying to figure out how to live a life i’m happy with while taking chemo. Like a double edged sword, chemo is both helpful to my life yet damaging to my living. Some side effects are more manageable than others, so far & so I hear, but they are all damaging in life changing ways.
So even though “you” haven’t said anything, cut this girl some slack. Cuz I’m trying to. I might have my hair. I might “look good” but let me tell you, I don’t feel well. In general “malaise & fatigue” is no longer just: 780.9 (or what ever it is/was) and 782.28, they are real phenomena.
When I run and jump to play with my kids now my lower half jiggles instead of my upper half. I am fatter than I’ve ever been and am trying very hard as of late to overcome fatigue and medications to do what I can to increase my exercise and eat as healthy (nutritious) as I can, while reducing my process food choices.
When I’m talking and doing things, I might appear fine but I can feel the difference in my mental abilities. My short term memory, multitasking skills, & my ability to take in a lot of stimulation and information all at once have all been affected. Diminished. Impaired. Chemo brain-? Not sure. It’s subtle but very real and when it impairs what was my normal, during a task, it’s disheartening. Disturbing. Depressing. Just plain upsetting. Well, let’s blame that on the drugs. Who knows? What I do know is it sucks and I disappoint myself all the time. Others don’t always or often realize my short comings but sometimes they do; neither situation makes me reel better about the reality. I also used to be someone with tremendous patience & tolerance. Now my patience are nil (fatigue)? Yet I need others to be more patient with me. Seems unfair and hypocritical.
I guess I’m sharing all this because I’ve been feeling so down and I am sick, of being sick! This post is an external expression of my desire to nix that and find a way to succeed in an oxymoron that I write here:
Living well with chemo.
This said, I am NOT asking for help. There are lots of resources out there And I’ve gotten the memos. I am writing a post to my blog to provide an outlet for expression. One where i can feel heard. Where people can ‘listen’ without the fear of “not knowing what to say” (to me). Let me be clear, I don’t want help accept to be heard. It allows me to say: yah, I’m having a tough time. I’ll be OK and thanks for hanging in there with me while I work through it. It allows me to scream how much I hate these changes but am willing to work through them to find happiness despite grief.
I’m willing to admit maybe I won’t work again (in my profession as an OT) but remain hopeful I will. It allows me to say I feel so sorry for my pain affecting others because they care about me and assure you and them that, just as you are doing your best, so am I! And even though “Love is all ya need” may not be entirely true, it can come pretty close along with some good communication and a bit of food, shelter, & water.
I’m ready. I concede. I am ready to live with chemotherapy. This is no war on cancer. I don’t want to fight or be a warrior. I want to be Switzerland. I want to live simply and enjoy. I want to endure through “the war” not be some war “hero.” I am surviving yes but it’s on going; not something to conquered but to be endured.
For this reason I will likely focus less on my original aspirations of educating and providing resources as i once aspired. Rather I’ll continue this blog to share and update others as I see fit.
There are a lot of great blogs out. Blogs with recognition. Huge readership. Mine is not one of them and frankly, it doesn’t matter. For me, I write when I feel it will help me and for specific people close to me. It’s an outlet to be honest without too much complication. Although I’ve posted less & less frequently I’ll still share from time to time. I share because it helps make my thoughts more concrete and less abstract from swirling in my head and it helps me to motivate myself into action or as I’ve said in other posts “tread” a bit harder in “this ocean.” And maybe, although not the pretty cleaned up version, it’ll be a record for my children and a remembrance to those I care about about the kind of person I really am. Loyal, determined, passionate, caring, socially concerned, and honest. No matter what, these core traits remain. Some of what cancer and chemo can not do.
It’s been over 2 years since my dx of breast cancer and stage iv (metastatic) breast cancer. It’s been one year since I worked last. I have no breasts, more muffin top and a weaker body. I sleep more and play less. I have less patience and feel bad that others need more patience for me. But these are not things I want. I want my old awesome hair texture back and an ability to tolerate things that others find frustrating. To be, not the sharpest, but a sharper tool in the shed. I want to have something else to blog about and a desire to follow through on otber than cancer. I want to feel up to participating in previous hobbies and interests. I want to be a more a patient parent. I want to have the energy to work. I want to laugh at all my husbands jokes that are indeed funny, most of the time. I want to be up to being more social.
But we don’t always get what what we want; so for now, I’ll try to enjoy the things I do have with more grace and appreciation and while I suspect I will (and have the right to grieve some more), I also have a responsibility to make my own happiness. So that is what I’ll try and do.
Peace * Love * Happiness