port pillows – a diy guide for cancer patients and caregivers

a lot of cancer patients have an implant called a medi-port. medi-port, you ask? it’s a little device implanted under our skin, below the collar bone, with a tube that goes into our artery. here’s a picture of mine…

i know, kind of hard to see, but i promise it’s there!

 

 

when getting chemo or other treatments, instead of having to get an IV in our arm, the nurse administers the medication through this port. using a special needle that is inserted through our skin into the “house” of the port, the medication goes directly into our bloodstream. as bad as that may sound, it’s actually much more comfortable than getting an IV every week.

 

while the port helps make treatment more comfortable, it does make wearing a seat belt more UNcomfortable. the seat belt rubs against and irritates the port. while some patients are either not bothered by the seat belt or they just endure the discomfort, some of us are really bothered by it. considering all the other areas of discomfort we have to deal with, why put up with something that can easily be fixed? i give you … the port pillow! such a simple and brilliant solution to a problem known only to the “proud” owners of ports.

 

port pillows are sometimes available at the oncologist office or infusion center, usually made by another patient or caregiver and donated to the office. i’m sure there are people who sell them on etsy, but i haven’t looked. they are really easy to make, even for the sewing-challenged, like me. no Martha Stewart gene necessary to whip these little babies up! (just don’t look too closely at my stitching, it’s not very great!)

 

you can use any fabric, but something with a little weight and stiffness is easier to work with. i’ve made them in two different sizes and i’m not sure which i like best. i actually use both, depending on what i’m wearing and how i’m feeling.

 

items you need:

• fabric of your choice

• strip of hook and loop closure (Velcro)

• fiber fill material (Poly-Fil)

• straight pins

• sewing machine

 

you’ll want to start by cutting your fabric into two pieces that are about 3 1/2″ wide and 6″ – 9″ long, depending on what size you want. then cut the Velcro into a strip about 3″ long. if you make a small port pillow, you only need one piece of Velcro, but use 2 pieces for a longer port pillow.

pin the soft side of the Velcro to the right side of one piece of fabric, about 3″ from the top, running parallel to the short side of the fabric, and lined up with the left edge of the fabric. pin the soft side of the other piece of Velcro about 3″ below the first, aligned the same way.

attach the rough side of the Velcro to the soft side, making sure to line up the edge of the Velcro to the right edge of the fabric. this piece will stop short before reaching the left edge of the fabric. do the same for the bottom piece of Velcro.

be sure to line them up straight across the fabric, otherwise the pieces won’t match up on the finished product, like below…

oops!

 

 

if you’re making a smaller pillow, use one strip of Velcro and pin it in the middle of the fabric.

stitch the edges of the Velcro to the fabric.

top this piece of fabric with the matching piece you cut out, with right sides touching, and pin three sides together – both long sides and one short side, leave the top short side open so you can stuff it with Poly-Fil later.

stitch the pinned sides together. be sure you only stitch through one layer of Velcro, otherwise you’ll sew the Velcro closed.

you now have an inside out pocket. turn it right side out, use the stuffing tool, a chop stick or the handle of a wooden spoon to poke the corners all the way out. once turned right side out, undo the Velcro – this will make stuffing the pillow easier.

use the Poly-Fil to stuff the pillow to your desired amount of fluffiness. again, use the stuffing tool, chop stick or wooden spoon handle to get the stuffing all the way to the end and into the corners. fill the pillow to about half an inch from the opening.

turn the raw edges of the fabric down about 1/4″ and tuck inside the opening and pin shut.

stitch the pillow closed, as close to the edge as possible.

reattach the Velcro and you are finished! i’m not a very fast sewer, so once i got everything cut out, it took me about 15 – 20 minutes to make one pillow.

to use, simply attach the port pillow to your seat belt, like this…

or this…

you can place the pillow in different locations, depending on your preference. you can put it right over the port, like this…

further down, in your cleavage, like this…

or further up, on your shoulder, like this…

where ever is the most comfortable for you is perfect!

 

 

i hope this little tutorial has made sense. like i said, i’m not much of a seamstress, so don’t look too closely at my stitching! also, if you have suggestions on how to make these easier or faster, please let me know!

happy, comfortable driving!

 

one year

one year ago today, my life changed forever. one year ago today, i was taken by ambulance to the ER. one year ago today, i was told i have cancer.

i can’t even begin to wrap my brain around all the feelings i have right now. i’m a jumble of every emotion across the spectrum and i can’t sort them out or find the words to share them effectively.

i am still in shock: it still shocks me that i have cancer. a year ago, as i laid in the hospital, i did not expect the reason for my pain, the reason i couldn’t walk was because of cancer. a slipped disc or something like that, sure. but cancer? no way. and i still feel that way sometimes.

i am still sad: i’m sad pretty much every day. i’m sad about the pain this has brought me – physical, mental and emotional. i’m sad about the pain this has brought my family. i’m sad for the things i have missed out on and the things i know i will miss in the future because of this damn disease. i’m sad that my husband is being robbed of a long, happy marriage. i’m sad that my kids are being robbed of having their mom around until they are parents themselves.

i am still angry: i’m angry at God for “allowing” this to happen to me. i’m angry at the cancer for screwing up my life, my husband’s life, my kids’ lives. i’m angry at myself for not having found the lump sooner. i’m angry at myself for not being able to do the things i want because my back still hurts or because i’m just too tired.

i still feel guilty: i continue to feel guilty about my situation. i feel guilty for not taking better care of myself, for my family’s sake. i feel guilty for not finding the lump sooner, so that maybe the cancer would have been found at an earlier stage and therefore would have given me a much better prognosis. i feel guilty for ruining my life, as well as the lives of my husband and kids.

i am still tired: between healing from surgeries, enduring chemo and radiation and all the unpleasant side effects, i am tired! i may not be on chemo anymore, i may not currently have any evidence of disease in my body, but the past year has done a number on my body and i am still recovering from all of that. i have days that are better than others, but i always pay for it the following day or two. with the kids being home for summer, it just makes everything that much more challenging and exhausting. except i can’t take a nap because they are home. the fatigue is constant, chronic, and sometimes extreme.

i am still sick: my last PET scan may have shown no evidence of active disease, but i am still sick. cancer is still in my body and it always will be. there will always be microscopic cancer cells roaming my body, looking for a place to land and begin growing again.

i am still in treatment: i may not be on chemo or getting radiation at this time, but that doesn’t mean i’m not in treatment. treatment will continue every day for the rest of my life, i will never be done with treatment. right now, it just means my treatment is medication to block my body’s production of estrogen and progesterone, block the cancer cell’s receptor sites that feed on those hormones and monthly medication to strengthen my bones because they have been so heavily damaged by the tumors.

i am still afraid: i’m afraid of when the rug will be pulled from beneath me again. because i know it’s just a matter of time – maybe a few months, maybe a few years down the road. i’m afraid of what will happen next, where the cancer might go next time and what that means for my treatment plan and prognosis. i’m afraid of what will happen after i’m gone. i’m afraid of what effect it will have on my husband and kids. i’m afraid of how their lives will change, how they will handle it, how they will grow up, what damage it will do to them. i’m afraid of what will happen if i’m not here to handle everything and protect them. i’m afraid i haven’t taught the kids what they need to be happy, healthy, confident, loved and loving. i’m afraid they will think or feel that they were unloved, because nothing could be further from the truth.

i am still grateful: i’m grateful for all the little ways God has taken care of me over the past year. from the ER nurse who quietly prayed over me after i was given the diagnosis, to my family who have done so much to take care of me and my kids, to my friends who have stepped up and loved on me and my family in so many wonderful ways – coming with me to appointments, bringing us food, gifting me with care packages, helping out with the kids, praying for us. i’m grateful for all of the prayers from so many people, there is no way i could have gotten through the past year without all of those prayers and without God’s help. i’m grateful for how this situation has brought T and i closer and how it has brought us back to church. i’m so grateful for T, for his love and support that has been enduring and constant. i’m grateful for the amazing example he has been to the kids about how a husband should behave, how a marriage endures in sickness and health, in good and bad. i’m grateful to God, for all He has done in me and for me over the past year. i’m grateful that His love never fails.

it’s been one hell of a year! i am hopeful that the next year will be easier, full of health and a continuance of no evidence of active disease. i hope that over time some of the negative feelings will subside, the positive feelings will increase and that i will continue to gain strength and energy.

it’s been one year, one hell of a year, but i’m doing my best to focus on the positive!

it’s been a year…

and what a year it has been! last summer i was dealing with some pretty severe lower back pain. my doctor thought it may be strained muscles, since my xray showed nothing unusual. i spent the month of July doing physical therapy, but i felt like i wasn’t making any positive progress, my pain was increasing. then, on Aug. 1, my lower back pain was so severe i could hardly walk. somehow, i managed to get up, take the kids to swim class and get them home. i spent the rest of the day laying on the couch, trying not to move. my daughter made me lunch and set it up on a little table so i could just sit on the couch and eat. sweet girl!!!

by evening, i was much worse. a friend who is a physical therapist came over and rubbed a numbing cream all over my back. she also made up a big ice pack for me and gave me some pain killers {i know, you should never share medications, especially pain killers, but i was desperate!}. i managed to eat dinner and then went to bed. the next morning however, my world changed forever…

i won’t go into all the details here, instead i think i will share my Caring Bridge posts from last year over the next several days. but to sum things up…

last summer i was diagnosed with stage IV metastatic breast cancer {MBC}. i had felt a lump in my right breast earlier in the summer, but my doctor said due to the extent of the metastatic lesions, the cancer had most likely spread before i noticed the lump. i have spent the past year healing from surgeries, enduring treatments, fighting for my life and learning more about a topic i never wanted to know about.

i am ER/PR+ and HER2-. my primary site is my right breast and i have mets {metastatic lesions} on my spine, pelvis, left hip and a few ribs. i have had 2 rounds of radiation to my spine and 2 surgeries to my spine – 1 to put bone cement in lumbar vertebra 2 and 4 {L2, L4} and 1 to fuse L3 – L5 in order to stabilize L4. i have been put into medically induced menopause and will be in menopause for the rest of my life {otherwise the tumors could begin to grow again}. i have had chemo through a port that was surgically placed in my chest and i have taken oral chemo pills. i get a bone strengthener through my port every month to repair my damaged bones.

i’ve had numerous types of scans. but the best scan i’ve had was on May 24. that PET scan showed that there is now no evidence of active disease {NED} in my body! after all the challenges and difficulties of the past year, it was such a relief to hear that! i know that although my doctors and i have done our part, my healing is a result of prayers and that God is good!

it’s been a tough year, and i’ll share more, but like i said, i think i’ll share my Caring Bridge posts from last year. they explain a lot and give a very good insight into what i have been dealing with. i have a lot of other things on my mind that i would also like to share about my journey, so be looking out for those as well.

i hope you, and no one you know, will not ever be faced with a cancer diagnosis. but if you should find yourself here, i hope my experience will be a source of encouragement for you.

more to come tomorrow, until then, peace and blessings to you!

 

mommas – we’re all the same, no matter the species

a momma mourning dove set up house on top of our back porch light. i’m not sure when baby was born because all we could see was her. but on saturday she had flown off and we discovered a baby that was kind of big and already has all it’s feathers, so it’s clearly not a newborn.

yesterday evening it fell from the nest – not sure if it was trying to fly – and a blue jay suddenly swooped out of nowhere and began pecking at it. i banged on the window to frighten it away and soon after momma bird showed up and fought off the blue jay on his second attempt. baby bird spent the evening crouched in the corner of the porch with momma bird perched nearby keeping a watchful eye.

after taking the kids to school this morning, i went outside to see if baby bird made it through the night. i found it huddled against the back fence, trying to blend in with the wood and the small patch of dirt it was sitting on. momma bird was nowhere to be seen. shortly after going back inside, it began to rain and i looked out to see that momma bird had returned and was sitting over baby bird to keep it dry. daddy bird appeared too and perched nearby, cooing to his family.

i can’t help but be in awe of how no matter the species, mommas will fight off the enemy and sit in the pouring rain to keep our babies safe. whatever it takes, mommas do it. no matter the species.

rock on, momma bird!

rock on, momma humans!

it is well with my soul

i was having one of “those” weeks. you know, the kind where things just go wrong, take longer than expected, when life throws you a curve-ball. and i was feeling pretty down about the whole thing. i mean, seriously, can’t life just flow along smoothly without tossing me about like a ship in a storm? i don’t have time to put life on hold because of the mess that curve-ball created. i was grouchy. i was annoyed. i was in physical discomfort. until i had an “ah-ha” moment.

it came mid-week at my MomsNext meeting. not only did i need the break from “life,” but i needed to hear what our speaker shared that day. she talked about how you get that joy that comes from the Lord. when life gets hard, when things don’t go the way you expected, how do you find / keep / get that joy? well, in short, it comes from having an upright heart. you know, that heart attitude that seeks God in all things, that keeps it’s eye on Him no matter what, that finds contentment in knowing He’s got this. instead of being all down and pissy about whatever is happening {or not happening}, thank Him, praise Him, ask Him to show you the silver lining.

so that fire in the oven that started my week off on the wrong foot? yeah, it was scary. yeah, it changed my plans for the whole week. but it could have been much worse, at least it was contained in the oven.

the mess of fire extinguisher chemical that was everywhere? {and i do mean ev.ry.where! all over the kitchen and clear across the room to the furniture on the opposite side of the living room.} well, i’m glad we had a fire extinguisher on hand and i’m glad i know how to use one. {like knowing CPR, having a fire extinguisher and knowing how to use it properly is one of those things everyone should have and know, but no one ever wants to use.}

the days, and i do mean days!, that i spent cleaning the kitchen, breakfast area and living room from ceiling to floor {literally!}? well, that’s not how i had planned to spend my week. i thought it was getting in the way of “life.” but cleaning that mess up IS life. life is what happens while you’re busy making plans. and i’m glad i don’t work outside the home anymore because it means that i was able to take the time necessary to fully clean up that chemical from the fire extinguisher and give those rooms a much-needed deep cleaning.

my body hurt all over from the work of cleaning cabinets, dusting blinds and cleaning drapes, moving furniture to vacuum every inch of carpet, contorting myself to clean out the oven, sweeping and sweeping and sweeping again and then finally mopping. but those aches and pains mean i have a body that works the way God designed it, a body i was able to use to clean up our home and keep my family from breathing in whatever is in those fire extinguishers.

then one night that week we had terrible storms, complete with insanely loud thunder and a hail and tornado threat. of course that meant no one slept. but in the morning, i was relieved to discover the worst missed us. my fervent prayers over the night asking God to protect our home and property were answered. we were tired {oh so tired!} but we weren’t waking up to storm damage.

of course, after a night like that, we were running late for school and i was annoyed {because i don’t like being off schedule, no matter what the night was like}. i was annoyed that the ambulance that pulled out in front of us caused us to sit through 2 cycles of the light, making us even later to school. but about 4 blocks down, when we rounded the bend and saw the ambulance’s destination, i said a prayer of thanksgiving for allowing us to run late. if we had left on time, we might have been in that 3 car accident.

when i finally made it to my MomsNext meeting, i discovered every high school girl’s worst nightmare had occurred – i started early. good thing i always have the necessary item in my purse. but, as “luck” would have it that week, i picked the one bathroom stall with the broken toilet. i had to reach into the tank and lift the flapper to make the toilet flush. in the process, i nicked my thumb on the metal ring the chain is supposed to attach to in order to lift the flapper when the handle is pushed. seriously?! this! on top of everything else i was dealing with! i was feeling pretty pissy about it all, because, well… ladies you all know that time of the month just makes everything more crappy. however, having that to deal with means my hormones are working as they should and my body is healthy. i live in a first world country where sanitary items are readily accessible. i might have picked the broken toilet, but fortunately i know how to fix one. and i might have cut my finger in the process, but my tetanus shot is up to date. {and, again, i live in a first world country where i don’t have to worry about tetanus because vaccines are also readily accessible.}

it started off as a really crappy week. but the ending? pretty darn good! i am blessed. i am content. i am actively trying to find / keep / get that joy that comes from the Lord. as the old hymn says…

as the sea billows roll

it is well, it is well with my soul.