Honoring Jen, honoring me

It’s funny how you can make friends sometimes. The world has changed from years ago. I have a few people, real human people (I almost typed virtual friends) who I have met via a personal connection, who has had cancer or has cancer. Sometimes I refer to them as my “cancer friends,” which is so lame because they are so much more. I mean, I have met and spoken with dozens of others who have or had cancer and we’re not friends. It is just that the initial intro came about given our circumstances.

I “met” Jen virtually. She was a few years older. She had a son, less than a year older than my sons. She had stage IV breast cancer with bone & liver mets. She had been diagnosed, I believe, about a year and a half before me but at a lesser stage before recurrence and a metastatic diagnosis.

None of that matters too much, really. What does matter, however, is she was an intelligent, well articulated writer whose blog I related to well and with whom I emailed sometimes. She was a good support to me at times, especially when I had some hard questions about pain. She shared with me her experiences and it was a comfort. I hope I was able to lend her the same type of comfort during our exchanges when she shared with me about some of her personal challenges and I “listened” (as well as one can via email).

Jen and I never met and our emails ceased at one point but we continued to follow one another’s blog posts. Jen became quite ill at the beginning of this year and she began posting less. She wrote more often than me. One day I received an email notifying me of a new post (like I had signed up to receive). I was nervous for some reason.

When I linked to Jen’s blog, I learned via a family friend who provided the entry, that Jen had passed away. It was mid-July. I miss reading her opinions, accounts of her life, her truthful complaints, witty and wise words and the love for her family, especially her son that shone through her posts. I am grateful that I can still go back and visit her by rereading them if I wish.

Besides being saddened by the news of her death, I was also disappointed for Jen because the last post she published about 3 weeks prior to her death sounded so angry. It’s easy to feel angry when you have a terminal illness. Heck it’s easy for people who don’t. . . But there was a sense of annoyance in the tone of her writing and in fact, in her typical candid way, she came out and educated those reading what was NOT helpful to her.

I didn’t ‘t know Jen well. Some would say I barely knew her at all, but what I can say is that I don’t believe she would have preferred her “last post” to be one that conveyed an angry tone. I doubt that she thought that would be her final post.

I worry the same could happen to me, yet I will not cease to express what I want to share due to this fear but it could be easy to do. Believe me, anger is one of the emotions that does swirl through my head a lot. Luckily, I also feel blessed and gratitude truly runs through my veins fueling me equal to the blood that nourishes and oxygenates each of my cells. If it did not and I could not recognize the love in my life I highly doubt I’d still be here to write this message.

I am so thankful for the life I’ve led, opportunities I’ve had, experiences that have enriched me, and the people that I love and that have loved me. I am so full of appreciation, I wanted to take time to honor Jen and recognize that she too had these same hodgepodge of strong emotions. I want to tell her that just because she left us with words of upset, in June, less than a month before she left, her memory as a loving mother and thankful woman full of gratitude and appreciation for her friends and family is what I’ll remember about her.

Likewise, it’s important to me that those reading remember me that way too. So often, I am hit by feelings of sadness, loss grief, anger, annoyance, upset, inequality. They are strong. They race through my head and sometimes out my mouth. When you (any person), is in pain or chronically, severely fatigued, it’s easy to be grouchy (in my case: Grouchy old woman Meus) especially to the ones we love the most. BUT the truth is, I am a fun-loving, appreciative friend and family member who wishes nothing more than to be helpful and to give to my loved ones & community. I just don’t have much to give right now among the challenges of keeping my figurative head above the figurative water I am figuratively (although often feeling literally) “Treading in,” trying not to drown. I am often more in a quiet survival mode as of late and it makes it difficult to be present to a moment, giving, attentive, and fun the way I’d like to interact with my loved ones.

So this post, whether it is the last post I am inspired and have enough energy to compose or one of many before this blog comes to a close, this post, is meant to honor Jen, my friend. And this post is meant to honor me. And represent me in a way that I am proud to be remembered. Today I put aside any pain-fueled grouchiness and breathless bitterness and say: thanks.

Just a day after Thanksgiving in the US:
I hope all my Friends in the US enjoyed their Thanksgiving and that the rest of you enjoy the sentiment felt by many for the holiday!

Love to my family. Love to my friends. And the rest of you reading, thanks for sharing in the part of this journey called life that I choose to share in my blog. I hope any bit of my story help others to keep on keepin’ on, the best they can.

We’ll all face struggles and challenges in our lifetime. Let’s try not to loose sight of all the good and those who help to make it better. Good exists despite evil; Love despite anger; and life despite death.

Peace * Love * Good Health ~ JLSM

Living with chemo-for the long haul

It’s been awhile. No real reason other than I haven’t felt I had much to say other than
Blah blah blah cancer
And
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
~ JLSM

Birthdays are a blessing & sometimes life isn’t “fair”

Last Saturday, March 16th I celebrated my 34th birthday. Hurray! When reflecting over the past year there’s lots of things to celebrate in my 33rd year and there were many good times spent with family and friends. Last Saturday, I also took time to look forward to my 34th year and starting it off proper by celebrating with friends and family including dinner out with G & my parents, who had flown into town that morning (for the weekend, to celebrate my birthday as well as E & K’s early). Last Sat turned out to be full of fun times, but first i needed to get an earlier than routine CAT/CT scan done due to abdominal pain which started earlier in the week. Finally, after successful coordination by my oncologist’ office with a facility that could administer the scan on both short notice and that would accommodate my history of allergy to the contrast dye, i received an appointment and avoided the ER. I somehow managed to drink all the nasty (barium sulfate) prep without vomiting or even gagging (over 2hrs) and properly timing the standard dosing of prednosone (at 10pm, 4am, and an hour prior to my test that morning) the scan was completed (and btw takes maybe 10mins) w/out an anaphelactic reaction. I was able to go home. I was free to celebrate my birthday or any other festivities outside the hospital. The problem was i was bummed. . . No need for further treatment (for example to deal with an acute pancreatiitis or another pressing issue) requiring further study or medical attention at the hospital meant that likely the radiologist being “confident that my doctor (the ordering oncologist) could review and address the scan result with me at a later date” meant that the probable cause for the pain I was experiencing had been seen on the scan and was likely cancer related. (Thought Jen to herself as she appropriately read between the lines. Sorry as i write this I envision that moment like a bad soap opera where a voice over comes on and speaks about me in third person.) So just as you read this and are waiting for the punch line you can imagine that as it was happening in real time, “waiting” to hear what the results were and why it wasn’t an issue for a doctor to address my unchanged pain more immediately was tough. Waiting is difficult. Patience IS a virtue! Finally Monday afternoon after a call to my doctor i received a return call and although i missed the call, i finally received some info via a vm message. I was told it was more cancer and that I was probably having pain due to the changes in my liver. Iand was asked to call and schedule an appointment to talk about treatment options, and that i could get a fax or emailed copy of the scan report, if i wanted. I was able to get an appointment for the next day & decided to wait until then to receive the report. What difference did it really make at that point. I had known 2 days earlier that my cancer was worse and my doctor confirmed in her message that i was right. She said that my bones and liver were worse (cancer had progressed). I mean, would receiving the report to read the details that afternoon really serve any purpose? Would it some how impact the situation or change the outcome accept to maybe upset me or my parents, who were going to leave for the airport to go home in an hour, even more? Um, no; no it wouldn’t. So i waited. This time by choice. So here’s the deal: a CAT/CT isn’t a great measure for bone mets and that’s why, originally, I had been scheduled for both a bone scan and CAT/CT in early April to check up as a routine comparison to scans from months earlier. Well the bone scan wasn’t completed yet because it wasn’t important to/get one in order to rule out acute issues and address my abdominal pain, yet the CT did reveal “worsened bone metastaies” in a general way citing my 4 long bones/extremities & spine. The good news is the report identified “no pathological fractures (fx)” (when the bone just breaks like an older person with osteoporosis because the bone is weak). I’m pretty sure I’d know if i had a pathological fx because wow, it’d hurt! But i don’t, thankfully, so we won’t “go there.” They also identified new small mets in my lungs; however, the report also said that the largest of the lung mets seen in previous scans had gotten small (a bit of good news)! That’s good because i really like breathing (sorry gotta have a bit of humor, even if it is dark humor). So, so far since assymptomatic w/bone & lung mets. It’s true, I have had and do have muscular pain that has given me issues as a result of a lot of things not worth fully getting into but for example due to bulged discs in my neck, tight pectoral muscles from surgery & reconstruction, etc. But all in all I’ve been fortunate. I have “gotten by” since diagnosis in Aug of 2011 w/minimal to no symptoms from the actual cancer. While it’s true treatment related symptoms have been mild to severe at times, inturrupting my ability to carry out my daily activities as I normally would have or could, I’ve still been fortunate not to have had cancer be the culpret of pain, limited function, or creating further medical problems. Well now that’s changed and it’s kind of scary. But sometimes life just isn’t “fair.” My liver has been greatly affected by cancer and it’s not very encouraging how they describe the liver tissue seen in my 3/16 scan but the good news is my bilanary ducts are unobstructed. Hurray! This means i can receive chemotherapy. And did you know, i didn’t, that no matter how little or much cancer there is in my liver (or anyone’s liver) that these ducts (for bile) could have become obstructed. And if they do, that’s a problem because the body can’t process and dispose of the the toxins properly and therefore, no more treatment at “therapeutic levels.” While these ducts could still become obstructed in the future, it isn’t an inevidable that they will just because of the progression of cancer seen in my liver. So that’s important in my opinion for me to understand and have hope. Apparently when the bilanary ducts are obstructed people start feeling, looking, and getting more sick because the body can’t detox and get rid of things as it normally does. . . (2 well known diseases that involve the liver, you can think about are cirrhosis of the liver often caused by alcohol abuse, but not always, and Hepatitis). Hence jaundice, “coke colored urine,” itchy skin, and fluid retention can occur (fluid retention often including a distended abdomen and other swollen areas; ascites can be seen). I am not yellow, yah! Not unusually itchy (although i admit i could probably use some lotion. Ha ha). You can draw your own conclusions about what happens when i go to the bathroom, because i am not blogging about that (!), and no fluid retention. I do however have pain, although not severe, persistant, gnawing, uncomfortable, and not expected to “go away” without the use of pain medication. So i have dropped the medication I’ve been taking since Nov, that apparently did not work well, and have added a pain management regiment which i am certain i’ll work on tweeking w/my doctor ’til i am happy. Looking to use a med that works w/the least amount of sedating effects and allows me to do what i want to do. I also have a slightly changed shape. Have you ever eaten so much that you look down at your upper abdomen, where your actual stomach is located and think or say OMGosh! My stomach is actually FULL. . . ‘Cause i can see that i have filled it. And then you are annoyed because you realize you over ate or feel bloated and yucky because you are TOO full? Well, unfortunately i have done that before (most people have at least once). Well. . . My tummy, it kinda looks “perma-full” now (a word i’ve made up to describe it. When i started to have pain in my abdomen last week, of course my history of liver mets came to mind. However, the pain wasn’t coming from the area where i’ve been told liver pain would come (under and at my right side of ribs; where a person’s liver is typically located). I guess because it is enlarged it can now be felt below my ribs and more in the middle also. When i write a post form my blog I guess sometimes I wonder, am I giving too much information? Am i being an over sharer? And for some readers, I’m sure the answer is yes but then I get thinking people don’t know this stuff. Unless they have MBC or someone close to them who shares details with them, how would a person possibly know what might be going on for me and each person’s situation is different also. So i think. . . they (who ever’s reading this blog) probably don’t know what’s going on. They hear breast cancer and they think: pink ribbon. . . Do a self-exam, get your mammogram, detect it early and you’ll be all set. Buy pink stuff and help find a cure. Well, those things can be true or partially true. But then there’s the 30% of people, out of all people diagnosed (dx) with breast cancer (BC) who will end up having metastatic BC (MBC). They won’t be cured, or “just” have a recurrance; they will be dx with BC matasteses distant to the breast in an organ or organ(s). 30% will be like me and have an uncureable form of BC, MBC. People like me who aspire to maintain it as a “chronic” treatable disease “managed” for many years to come. We aspire to out live the nasty statistics that say only 15% of the 30% will live 5 years or more since diagnosis of MBC or better yet a miracle. I believe in miracals. I just don’t count on them. Do you?) So I share a lot about my situation and expand on information to help educate others. I never want to present drama or paint sympathetic pictures nor do i want to paint rosy pictures about what’s going on either. . . I just want to try to update those who care about me, honestly, and educate them and others who i don’t know who may be reading for various reasons. Maybe then you can empathize and help your neighbor or be more sensitive to what to offer people for help or comfortable just asking vs. offering sympathy but just not knowing or understanding if you can do anything to help or be of support. . . Maybe just have a small understanding of what myself or someone else w/MBC might be going through. As usual, i digress but i guess I just wanted to explain where I’m coming from. Since mid-December (2012) after coming off that experimental oral chemo med (cabozantinib) and it had been out of my body long enough (even though i had started another treatment for my MBC) I was feeling like myself again. I’m certain I blogged about it. I have been elated and enjoying simple pleasures and lots of them every day because my energy level was (my) “normal. It was simply awesome and I’ve been telling everyone i know. In early March I even told my sister-in-law not to worry that she was not “helping more” during her and her family’s visit a few weeks ago. I told her I wanted to cook for them, clean, etc and receive less help. I wanted to do more to “hostess them.” . . . Because i could! I was enjoying it and feeling up to it! Her, our brother-in-law, and other family members of mine and G’s had traveled to visit us just months earlier to help out during periods of time when i needed the help and therefore our family could also use the help. Times when i was taking the experimental medication (cabozantinib), after one of my many surgeries. . . You get it. So on this visit, a vacation, I was pleased to cook THEM a few meals and take care of their dishes or other regular, routine tasks. And I also reminded her, jokingly, of the reality that I may very well need the help in the future. . . Joking and hoping that it was “later, rather than sooner” and that she could then “cook, clean, and help” all she wanted “cause we’d probably need it.” How silly to have said this the first week of March and w/in days began to feel more tired than usual and then unexplained aches. Within a wk since talking about it, I had fatigue symptoms not from a surgery, or from a (new) medication, but from the cancer. Grr. . . Apparently cancer in your liver at some point has a reputation for giving people generalized “fatigue & malaise.” And it’s no joke. I need naps again. So I’ve accepted it. I lay down and nap. I am concerned that the new treatment I have chosen to pursue and will begin in a few days (an oral chemo regimen), will increase my fatigue; however, I’m also very hopeful that it won’t. Apparently the last drug I was taking (letrozole) has a reputation for making people tired and achey, yet I really didn’t have any issues with those or other side effects on that medication. My new treatment will be larger pills; i hate taking pills! In fact i think my sister who is 5.5 yrs younger, as a child, could actually swallow pills before i could. So uhg. . . I will take them for a wk and then get a week break and then again for a week. On and off like that. The side effects are all “typical” of chemo although from all I’ve read very few people loose their hair while taking this medication. Per the docs, this med is “tolerated well” and I’m glad that the starting dose will not be a phase II study question of is this dose too toxic, yet if it were tough to take (with intolerable or difficult side effects) they can stop the dose and i could restart on a lower dose. So we’ll see. In the meantime, I think I’ll be looking into some additional assistance in the afternoon and early evenings with E & K to make things more manageable and help meet more of their needs and mine given this new, consistent tiredness that is not expected to get better but with the new medication could get worse; let’s hope not! If anyone living local knows of a reliable teenager or college student looking for a consistent babysitting job a few days & hrs each week, please let me know. I would consider a “mother’s helper” but a babysitter is even better. Also, I think I will look into using the calendar our family used for meals and babysitting back in Aug-Dec of 2011 when I was first diagnosed and began (typical) chemo infussions. I’ve never been very good at asking for help but I sure do like being social so this is a step for me toward satisfying both. I would definitely enjoy seeing friends that are free come over after work and hang out and help me w/E & K while trying to either get chores done while taking a break from the boys, help playing together to spread out my energy, take advantage of laying down while the boys go for a walk or play w/a helper, or having help feeding them dinner, giving them a bath or other necessary childcare needs that might need getting done (G works 4, 10 hr days and 4days/wk arrives home just in time for E & K’s bedtime ritual.) We were so lucky to have many people sign up to participate in or receive updates on our needs for that calendar before; however, i realize people’s situations and responsibilities change and some who were free before may not be now or maybe someone who wanted to help but was not available then, might be now. We understand and have no expectations. I will work on (or delegate to someone else) to set up a current calendar w/”babysitting or mother-helper” needs soon and email the people previously signed up. Folks can unsubscribe or change contact info, availability etc. If you live locally, close enough to commute to our home to help on a weekday evening or possibly weekend time and are not signed up, but would like to get more info, please leave me a comment on this blog with your email address. ** i will NOT post the comment and will delete any comments used for communication in this matter vs a comment about this posting. Thanks so much to so many of you out there for being so kind and generous that I feel comfortable enough to ask for help and to make such a calendar. While I’ve felt well the past few months I’ve tried to help others when ever I could to pay some of the generosity that our family has received forward. It was a great feeling to be on the giving end rather than the receiving! Well, rightfully so, I was excited to celebrate my 34th birthday and i am really looking forward to enjoyable the adventures and experiences that my 34th year will bring. I’m not one to complain about turning another year older because each future year experienced is a blessing. In fact, each month, week, and day is something to appreciate! I may be among a minority of women in the US who would say this, but I’m looking forward to turning “35” but mostly to enjoying each day between now and then. Similarly, I’m also really looking forward to singing Happy Birthday to E & K tomorrow to recognize their 2nd birthday! Despite their defiant, annoying ways, at times (which i realize comes with their age and is typical of development), I’m blessed and excited to witness their upcoming achievements & milestones. Together with G by my side, I’m eager to experience E & K’s days of expidential development and to be amazed as they explore and learn about our world and about life. . . Even if (as my mom has always said) life isn’t fair. Peace * Love * Good Health ~ JLSM ** will correct typos and spelling errors at a future date (3/20?13)

2013: the first quarter (doesn’t that sound so formal?)

January has been a fun month! New year, feeling well since switching medications (off study drug and taking a hormone therapy via my local oncologist) since November, had a fun visiting with family in Montreal, Canada and New England for the holidays, and feeling like “myself” again. Since mid Dec despite some muscular pain (which is all well managed now and another whole story), I have been feeling normal, what ever that is, and think it must have taken that long for the other medication to fully leave my system, not to mention recovering from surgery I had Nov, 13 (general anesthesia and any major surgery will take a bit to recover from, I think). So since this time, I’ve been enjoying life. Living well. Trying to meet small goals each day and week. A great sense of accomplishment.

I’ve been taking time for me. Taking care of me but also trying to lend a hand and help where I can which is not only helpful to others but therapeutic to myself. Here’s a ‘laundry list’ of things i’ve been up to since Jan when i last posted and things i am proud of or have been enjoying. You know, what i’ve been doing while keepin’ on keepin’ on. Living well: visiting and helping a family friend post-surgery after returning home; making more yummy and healthy meals for my family with a renewed found enjoyment for cooking and trying new foods and recipes or getting creative from my own brain (w/the help of Pinterest, maybe); Pinterest. Yup. I like it! It’s great and for the first time in a long time I think, “wow, I might do some of this stuff” verses, “that’s cool, but I can’t imagine feeling up to it.” So yup. Signed up. Been “pinning” and been enjoying the real possibilities that weren’t there when I wasn’t feeling as well; knitting and crafting. Small, teeny, tiny projects and one finished sock (Yes, it’s true knitters, my second sock. The second one I’ve ever complete in my life. Thanks to Nean, I even have a matching pair cuz she finished another for me after I my first sock and never got to it’s match.) So not only did i finish my second sock recently, I even casted on it’s matching mate, and who knows, maybe G will get a pair for his birthday. . . In September. . . of 2014 (just kidding. Well maybe I’m not); cooking for some other friends who were having surgeries of their own. Feeling so good to give back a bit after their continuous generosity to us in supplying us w/homemade goods and other food following surgeries and when I wasn’t feeling well and G needed to continue his normal work schedule; finding time to meet up with or chat with friends (even for short periods of time) even if I haven’t begun to hang with and call all those that I still want to be in touch with; taking the boys out more; getting back to the gym. Hurray! On week two! Feels so good to be moving; being available to others as a resource for navigating a breast cancer diagnosis and all the emotional and pragmatic, bs that goes with it; continuing my counseling a strength and gift to have external support of someone who cares but is not “inside your inner circle.” Who can provide a different perspective and is a professional or like she told me on a ‘good day’ when I have nothing to say ‘just good to get the endorphins going. I encourage anyone, for any reason to try counseling. Does (my body, and mind) good; a bath. . . I took a bath for the first time in months the other day. Was so nice and relaxing. Me time; finding ways for our family to do more active & enjoyable things together again, now that I’ve been feeling up to it, like bike riding. Even if it’s a short ride. The first step to longer rides in the future; throwing a party for G and all our local friends who could make it (wish I could have invited all our friends and family, near and far). We had a fun Valentine’s celebration and although I thought it’d be a good time, was pleasantly surprised at the ‘turn out’ and how many people seemed to genuinely have a good time. So thankful for everyone’s support and just one way we could show it. And boy did I do some baking for this one!

Well that’s a little bit about what I’ve been up to this past month and a half. I have been going to Physical Therapy for some cording in my right armpit. It’s uncomfortable and painful at times but mostly not even aware of it unless we are pulling at it t dying to treat it so it might go away (for info about what cording is, in a generic way, you can check out this link Continue reading

Gone a year: Loss->Grief=shock, anger, sadness, acceptance

January 12, 2012: marks the day i had a “bilateral, modified, radical Mastectomy” (they took ’em both; they took it all, but they did leave the pec muscles). I’ve been going on without ‘them’ for a year. Sure i had some reconstruction but it’s not the same and that’s not the point (and please do NOT mistake reconstruction for augmentation. v.e.r.y different). I miss ‘them’. . . and while I’m so much more than “boobs” and always have been (i am fine without breasts!), i still miss them.

I think what i miss the most w/out too much, too much information (no one likes TMI) is that my much smaller “breast mounds” after reconstruction do not provide the kind of pillow-like padding as my God-given ones did. When my sons try to snuggle on into sitting with their Mama (to say, read a book). . . They hit mostly chest bone and very little, stiff ‘mound.’ Just not what I’m used to. It’s just not as comfortable or snuggly for either party. I’ll let you think about what else i might miss. . . Very personal, mostly small things we all usually take for granted and a few major things. But i admit, i do like. . . wait for it. . . not wearing a bra😉

Overall, having the mastectomy was a necessity. Even though i didn’t want to do it and I can live without them, it’s not something i prefer. I’m allowed my times of missing them, time of sorrow and times of just dealing with the loss. I’m entitled. We’re all entitled to grieve loss in our our way, in our own time. Your feelings are your feelings. But at the same time, i don’t dwell on my situation regularly.

So a year later, here i am.
I had an excellent day and feel good. I’m glad it was a day where i felt a bit of nostalgia and even sadness missing ‘them’ but did not succumb to ruminating & letting sadness or anger dominate my mood. Instead (besides having good times and making excellent memories with my family and a few friends), i did something special to honor this day and memorialize my loss. It may seem weird but asserting control over my body with a nose piercing (something i have wanted to do since high school) seems just right.

Happy with what i’ve got, not dwelling on what i don’t have.

“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.”
~ Vivian Greene

Well, if you know me, you know i’m not a very good dancer but geesh!!- do i have fun trying! And luckily G is a great dancer and helps me compensate for my weakness in this area. I think I help him step out into the rain sometimes too. So many of you make it worthwhile to spend time out in the rain dancing.
Thank you!

Peace * Love * Good Health ~JLSM

Taking a break

Since I can’t take a break from cancer, or a break from treatment. . . I’m taking a break from talking about it. Wishing you all a great December, any holidays you and yours celebrate (between now and New Years) and well a Happy New Year too🙂

Enjoy.

Peace * Love * Good Health ~ JLSM

Stubborn & persistant. . . Just like me

A wk and a half ago (11/13) I had surgery to move forward with the “breast reconstruction” that decided I would have based upon what was best in my situation and what I was willing to do. (More on education about breast reconstruction NOT “augmentation later in a several part series I will entitle “all this for an A cup” but for now. . . Not the focus of this post) I’m feeling well, just a bit tired. Probably because it requires general anestisia and is a major surgery my body is trying to recover and heal from. Totally normal. G, E , & K and I have alll been fortunate to have extra help though. G’s mom came for a wk pre-op which got us on the right foot to prepare and have extra hands and a good visit and then my Mom came for the surgery and a wk post-op to help G while he was off wrk so someone could also be available to help me if need be too. After that one of my sis’ showed up and is still here w/us. She’s been taking early shift so I can sleep in and G can get ready for work and been doing so much to care for the boys to help us out. She has also accompanied me to a few appts and to run important errands. I’m driving now. I can do a lot but G & Sarah are still doing ‘most of it’ (the work-childcare, laundry, cooking, cleaning) annd we’ve also had awesome help from friends droping off meals to us and some goodies. In fact I blame JT fully for my eating pie @ 10am the other day (not my own poor will power or choice for doing so. Jk) Thanksgiving was nice the 3 of us adults home w/the boys and a mutual friend driving in from Philly for some yummy SAS grub and good company. The boys are out now for a walk w/the visiting ladies and soon G and I will prepare to go to a matinee (movie-no spell check on my blog app and I am a bad speller). We love going to the movies and don’t too often any more since E & K can’t come. Anyway, I’m stalling I guess. My surgery was to exchange the tissue expanders out for inplants (the simple way to put it) and my plastic surgeon was also to take some biopsies of 4 “areas of concern.” Although my onc-s (In MD & MA) were less concerned I had reason for concern about these skin changes on my chest and indeed they turned out to be positive (for cancer). I got this news at my post-op appt Tues and then was fit in to see my local oncologist for follow-up Wed. Woo hoo. After collaborating w/my onc in MA, my onc here gave me the choices and recommendations since because of this news, I am no longer eligible to take cabozantinib, the study drug. I sarted a new hormone therapy (pill) yesterday. It’s smalll to swallow and should be manageable. We are hoping it’ll be effective but at least if it isn’t my “failing” it will allow me to become eligible again for a few different study drugs out there. So my diagnosis of invasive ductal carcinoma has also grown to include inflammatory breast cancer (IBC). I will do some education for those who are interested later about this but it just means that the cancer is in my lymphatic system and involves the chest wall (skin)l now. This has it’s own compllications and crappy symptoms for some. So far I do not have any additional ailments from IBC and hope that I will not develope them. For now this is what this means to me. I have to change drugs and I have to be checked out for progression monthly now to determine if drugs should be switched or if treatment approaches should be changed. It means I have more irritants and occassions to provoke self talk to calm myself down and that it’s not a big deal. I have more anxiety about how this could progress and I might feel in the future if things progress. I am hopeful we’ll be able to keep it “blunted” like the cabozantinib seemed to be doing and I am still praying for miracles. In the meantime this damn cancer is stubborn and persistant just like I can be. I guess after all it is my cells “gone wrong” So what can I expect. Well unfortunately cancer’s not about good vs evil being a “fighter” makes it seem like I need to “try” to will it away.” If only I were tougher, or more pious (prayerful), I could combat “it.” That I should be a proud “survivor” as if to say those who have passed from MBC didn’t try hard enough. Well not that I owe it to anyone, not even my family, but if there were ever any doubt let me assue you I didn’t ask for this and if I knew how to be more stubborn or pesistant than this cancer than I would have “kicked it’s butt” but it’s not a matter of that. So any metaphor you may think of, oof being a warrior or fighter etc. Let it dissolve from your illusions you have about me. I am a strong woman. Strong of heart, of mind, of tolerance for pain & discomfort; I used to be strong in body and in ways I still am. But I am just a regular person who is living (and trying to thrive the best I can) with a horrible disease. I am not warrior. I am not fighter. Yet I am not weak or “giving up.” I just am. I am just Jen Meus who has a crappy situation and has to keep pursuing treatment to ensure I exhaust all available and personally acceptable options to slow and/or stop the disease process for as long as possible. Pray, I try to consume a healthy diet, I try to exercise when I feel up to it. I’ve pursued massage & physical therapy and counseling. But it can not be willed away. I just have to trust in God and trust in the decisions I make w/my husband for the best way to procede. I am not looking for sympathy, empathy, or profound words of encouragement. I already feel encouraged by all the support I have and know that there are many who sympathize and unfortunately too many who can empathize w/my situation. I appreciate it all. I just want to be. I want to share but I just don’t feel like details right now because often I depersonalize it all so well when I am able to share with others but right now it feels very personal. It feels like something I don’t feel like being sad about. It is not worth the emotional energy to expend for what ifs. Let’s just see what will be. It’s all a mind game. Stubborn, persistant cancer now seen on my skin vs yellow pill instead of white pill. But never vs my spirit. That will always remain cancer-free!