Some of these dates are painful to remember, but I will never forget...
March 2 -- driving to a
birthday party for my niece and nephew, I am annoyed that the under wire in my
bra seems to be poking me, A LOT. I decide to check it when I get to the
party, but my bra was intact. I chalk it up to a possible bug bite and
decide to check it out when I get home. As I am undressing for the
evening
March 21 -- I never thought I would have
heard those words (You have cancer), let alone hear them at age 33. prayers and
positive thoughts are appreciated.
March
22 -- I was just diagnosed with breast cancer yesterday....my head is
spinning, stomach is churning, heart is heavy...but I WILL kick Cancer's butt!
\
APRIL
17 -- friends & family - please send prayers & positive thoughts
that the Divine Healer's Hands guide my surgical team to remove all of the
cancer tomorrow and that my lymphnodes are clear ♥
APRIL
18 -- just a quick update - home & doing fine - will know more in 7 -
10 days; praying for a speedy recovery & quick chemo/other therapy; hoping
for a cancer-free bill of health VERY SOON! thank you all for the prayers &
positive thoughts -- keep 'em coming! :)
lumpectomy site 04-2013
lymph mapping site 04-2013
bruised arm where IV had been
(looks better now than it did)
05/2013
APRIL
29 -- thank you for the kind thoughts & words. I have come to find
that more often than not these appointments raise so many more questions than
they offer answers. I am sad to say that I don't know much more than I did a
week ago, and I won't know, until I am able to meet with my oncologist and
radiologist at the TTCC. Unfortunately, they do not schedule appointments by
phone, my medical records (including pathology report) had to be faxed from the
surgeon's office; I was told that I should hear from the TTCC in about 2 - 5
days with an appointment date/time. *sigh* I am incredibly frustrated,
overwhelmed, exhausted and plain pi$$ed off over this entire health/insurance
debacle. It is a full-time job in and of itself to find agencies that CAN help
and that WILL help, let alone contacting (phone or email) each, discussing your
situation, your diagnosis, etc. I spend HOURS each day on this and so far, I
have not hit anything but snags and red tape. I'm either too young, or too old;
not able to be helped because I don't have children in the home, or am not
currently pregnant; unable to get help without an addiction or severe mental
illness; unable to get assistance without ANY type of coverage or benefits (I'm
STILL having trouble swallowing that one)...please keep me in your thoughts
& prayers as I continue to put one foot in front of the other and push
through. As I told my friend Mare today, we both have long roads ahead, but ONE thing I
KNOW for sure....we'll be doing Survivor laps at the Relay for Life together
soon! ♥
NOTE: emails
sent to congressmen, senators and the governor -- seriously?! I'd like the
decency of SOME type of response! *argh*
I
don't know much more yet. I will meet with my oncologist soon, I hope. The
mass is an invasive, aggressive cancer. Removed cleanly with good clean margins.
I may have to have an MRI/pet scan and/or lymph node dissection to determine
if cancer has spread at all. Right now, with just mass & no lymph nodes,
they believe it is stage 2. Will know more with additional tests. Mass
was approx 4 by 3...surgeon said about length of an egg but not as wide.
Still need genetic testing ($3500 up front without insurance) as
well.
May need double mastectomy, further tests & genetic testing will help determine
that.
'Nurse Annie' to the rescue
she kept stretching out longer and longer to get closer to me and cuddle with me after surgery
04-2013
MAY 1
-- Our
family and loved ones are uniting to raise money to help K (me) with her battle against breast cancer. She was
diagnosed with an invasive ductal carcinoma in March. She does not have health
insurance and needs to pay upfront for some important testing and other
services. Without a family history of breast cancer, one of those tests - the
genetic screening - will help determine the likelihood of recurrence (among
other factors). Her doctors have indicated that this test is important due to
her young age (33 years old) and the type of cancer (it is aggressive and
invasive). She is likely facing additional tests including MRIs and Pet Scans,
as well as additional surgeries. She has already had a lumpectomy to remove the
tumor in her breast. She is likely facing lymph node dissection and removal,
the placement of a medical port, and possibly a double mastectomy (and
reconstructive surgery), as well as chemotherapy and other therapies. She has
mounting medical bills and is struggling to find help as she does not qualify
for any of the state or federally funded medical programs.
{used http://www.giveforward.org -- set up a catastrophic fund at PNC after learning that the online fundraiser would take a percentage of the funds, but that the bank would not}
MAY 2
-- Appointment
with oncologist tomorrow morning...*fingers crossed* I'm hopeful that THIS
appointment leads to more answers, rather than MORE questions! {prayers are
appreciated!}
BIG
THANK YOU to office of Senator Sherrod Brown. I rec'd a call from a woman at Medicaid
2day to discuss my options (breast cancer w/o insurance) thanks to an email she had received from the Senator's office (regarding my email to them).
NOTE: It was a good, informative
conversation...unfortunately, not "good news" at all per say; but I was thankful to have an informed
person to speak to about my current circumstances. And thankful to know that an email sent
didn't just sit in an inbox or get diverted to a folder. She told me that I'm not old enough to
qualify for the BCCP and not 'qualified' per say for medicaid, but that I
should push our local office to do the application, a denial letter may help
other apps for assistance in the future. she acknowledged that the local folks
are overworked and understaffed and often can't or don't want to complete apps
if they can see at a glance that you're not eligible. *sigh* ...I coulda told
ya that!...
To
CLARIFY -->
While I am VERY thankful that the folks at Senator Sherrod Brown's office
forwarded my contact information to this woman at Medicaid, and that she
called, I can honestly say that it was a good, informative conversation...unfortunately, not "good news" at all per say. While I
was thankful to have an informed person to speak to and thankful to know that
an email sent didn't just sit in an inbox or get diverted to a folder, yet
AGAIN I heard that I'm not old enough to qualify for the BCCP and not 'qualified'
per say for medicaid, but that I should push our local office to do the
application, a denial letter may help with other apps (but not medicaid) for
assistance in the future. She acknowledged that the local folks are overworked
and understaffed and often can't or don't want to complete apps if they can see
at a glance that you're not eligible. *sigh* ...I coulda told ya that!...
I keep trying to find some help or assistance of some type (and often find the hilarity in the definition of
'insanity' as I hit yet ANOTHER brick wall or get snagged up in red tape). The
hospital has a charity program, if you qualify, but other aid is not available. I believe that the hospital program cuts down the cost but doesn't make it
much more 'affordable' for someone on a fixed and limited income (as my
'extended' unemployment is set to run out in less than 2 months).
MAY
3 -- appointment with oncologist answered some questions, raised a few more (of course), and
added to the stress level....of course, my little 'scare' at the office didn't
help matters....all I can say is, after puking and passing out, I'm almost
thankful that I will be getting a Medi-Port.
MAY 4
-- dear
giant pain in my neck (literally),
please go away. I have tried to coax you out, medicate you, freeze you out and
heat you up. you're so stubborn. just please...go...away! xo ~me~
update
:)
met with the oncologist yesterday and essentially he confirmed what the surgeon
said last week --
pathology showed it's invasive and aggressive -- he is particularly 'rattled'
by some of my markers (they are at 97% which is highly unusual)
I have to have chemo, radiation, and herceptin treatments. I will get a
medi-port for those. thank goodness after the problem with the needles
yesterday (I puked and passed out, NOT fun and NOT normal for me)
I also have to have a lymph node dissection (for further analysis) and the
double mastectomy is still a possibility down the line (depending on tests).
He definitely wants to start all of this with an MRI AND a Pet Scan (which
makes me feel better), as well as the genetic testing.
<1st steps> MRI / Pet Scan / genetic testing
<next step> lymph node dissection and implanting the medi-port
<next step> chemo, radiation and hercepton treatments
· I
have been to the Womens Health Center and they provide low-cost/no-cost
mammograms and pelvic exams, etc. They were my 2nd stop in the initial
diagnosis. While they are being apprised of my health, they are not necessarily
playing a key role any longer. I have applied for charity funds through the
hospital (no response yet, but I keep getting the bills), I have applied for
Breast and Cervical Cancer Project (BCCP) through the state and I'm not old enough
according to their guidelines, I have applied for a medical card through the
state also, but I'm not 'qualified' by their guidelines (I'm not 65 or older,
not pregnant, no children in the home, not 'disabled'). I have also applied for
SSI and disability. I was told that I did not qualify for SSI because I receive
unemployment and the disability decision may take up to 6 months (despite my
diagnosis). IF I'm determined to be disabled, I can qualify for a medical card
then; BUT if I still have unemployment, I'll have a medical co-pay EACH MONTH
of $600 (which is over half of my unemployment, so I would not be able to make
my mortgage payment).
I am currently on 'extended' unemployment
funds, and I believe I have about 7 weeks left; after that, I have no idea. The
oncologist and radiologist/oncologist are both also part of UPMC and AGH.
That's comforting.
MAY 7 -- Appointments coming up:
√ PET Scan (Thurs, 5/9)
√ MUGA Scan (Fri, 5/10)
√ MRI (Tues, 5/14)
√ surgery (lymph node dissection and mediport placement) (Thurs, 5/16)
√ follow up with oncologist (Fri, 5/17)
...still waiting to schedule an initial consultation with the radiologist also...
*ugh* and this is j-u-s-t the beginning
MAY 9 -- feeling like it's going to be a long day...fasting for the PET scan in the afternoon is not fun...plus the tests takes 2 - 3 hours. I will have fasted for about 16 hours when I can finally eat...I know I'm a bit 'fluffy', but damn...! *haha*
to top it off, I woke up hungry, with a headache. *grr* hopefully, I don't get sick on this test! ooooh...and I was told that I needed to stay away from small children, pregnant women and small pets for 6 hours after, seeing as I would still be radioactive...hmm...should be an interesting day! :-\
the PET scan was interesting. the worst part, admittedly, was not being able to eat or drink anything but water for over 16 hours. I can't touch the kitties, or be around pregnant ladies or small children for the rest of the day because I'm still radioactive (no joke!). Prayers & positive thoughts are greatly appreciated!
MAY 10 -- had the MUGA scan today, "Hope" the tech said that cancer patients often have to repeat the test throughout chemotherapy and herceptin treatments to ensure that the heart is not being damaged. she and I had a nice chat session, which made the time pass quickly, and I learned something...I won't 'glow in the dark' from this radiation dose, but I am now a card-carrying radioactive individual *lol* {I had one yesterday too, but I couldn't be around people, so it wasn't quite as 'useful', but I have to carry these until 5/12/13, in case I would go through an x-ray machine or metal detector...just to give them a heads up that I'm radioactive!}
MAY 11 -- days like today often test my faith and my patience (mostly ignorant people); then, the mail carrier delivers the day's mail and I'm reminded of the kindness and generosity of the human spirit and those awesome, loving people in my life...touched by the cards and letters...including one from my cousin Karen, my OES sisters and brothers and some random person from a Facebook coupon group that sent me coupons for some items that I will need once the chemo/radiation treatment starts. - blessed
MAY 14 -- MRI today was...well...interesting...I have not had claustrophobic feelings before, but I had a mild panic attack inside the machine...guess next time I should opt for an OPEN MRI *lol* ... plus ... the tech says not to worry that the contrast dye has been given to other patients who have had previous reactions to IVP dye without adverse side effects...less than 1% of their patients see any type of allergic reaction to this dye...chalk me up to that less than 1%! before the last pictures were finished, my left eye was puffed and itchy...my nose was itchy...my scalp was tingling...and I was wheezy, but tech said it was most likely the fan in the tube, not the dye...so I left...more wheezing by the time I got to the car...and coughing...(stupidly) I went home. perhaps not the best decision ever...but I did have my epi pen with me. still itchy...but, better. to top it off, I decided to make a quick stop at Kroger to refill my water jug (5 gal); everything was fine, until I put it back in the buggy...and the bottom literally busted off of it. water EVERYWHERE...and I had to stand there and try to hold the bottle together to keep it from literally gushing out. *sigh*
MAY 15 -- I had an initial consult with the radiologist oncologist this morning; so far, I like him. His demeanor is similar to Dr. R's (oncologist) and he took the time to discuss the radiation treatments, as well as explain the concept of chemo/radiation/herceptin treatments and why they are done the way they are, and so forth. He knows where Apollo is, has patients from the area, his son is graduating from Lehigh University too. He is affiliated with West Penn Allegheny Health System (particularly Allegheny General Hospital). Also, he and Dr. R will collaborate on my treatments, which is reassuring. He said we won't stop until we reach 100% cured oddly, he looked up my MRI from yesterday...and he reviewed it (for the first time) in front of us; he mentioned that I have a cystic lesion in my brain. He said he does not believe that it is cancer, and he said it is quite possible that it has been there since birth. However, he wanted to consult with Dr. R and to be prudent, wants to send me to a neurosurgeon to review the MRI and discuss. I left thinking I would hear something in a few days to a week to schedule. The neurosurgeon's office called a little bit ago; said that my oncologist called them, and wants me to be seen this week; I asked if there would be any conflict with my surgery tomorrow, they said no. I asked if (depending on when/where for appt) I could see the doc early next week; woman said no, doc wants you in this week. OOOOOK then...I will go see the doc on Friday morning to discuss the MRI. *smh* are they being cautious? are they covering their own a$$e$? or should I be worried? can't/won't think about it...concentrating on tomorrow's surgery.
MAY 17 -- had surgery yesterday -- lymph node dissection and medi port placement. I was pretty sore and a little medicated when I arrived home, but overall, it went well. I have a drainage tube on my right side (where lymphs were removed). Surgeon did mention that at least one lymph node wasn't in the normal location (go figure! *lol*) I have to wear the surgical bra and dressings and drainage tube until I see surgeon for follow up on Tuesday. I am still sore and tired, but "okay". I saw the neurosurgeon today, he said he is not overly concerned with the recent MRI images, but ordered a follow up scan in 2 months to ensure that there are no changes; he also told us to make sure to call if I developed any usual symptoms. I guess that's good! Please say a prayer that whatever it is doesn't change (for the worse) .
MAY 21 -- Surgeon removed drainage tube today and I received the 'ok' to shower, but no lotions and no ointments on the incision sites. I have to go back in 3 weeks to check all incisions again. He told us that 4 of 13 lymph nodes had cancer so it confirms that the cancer has spread out of breast tissue and also confirmed that chemo is definitely necessary and may be adjusted accordingly by the oncologist. I see that Dr on Friday. Surgeon also said that the medi port site looks good. I still have a pinching/zinging feeling from the area when I move certain ways, but I understand that will go away. The numbness I feel in both areas is normal because they cut through nerves. He said that they typically regenerate, but could take 6 - 8 months, if it comes back at all. I also have a right arm restriction, which means no blood pressures, no blood draws or injections on that side, unless an emergency, due to the lymph node removal. He also indicated that I may experience swelling in this arm from time to time since I am now missing lymph nodes. I was also told that I may have some seeping from the area where the drainage tube was; and I did notice it after my shower today. Weird to put deodorant on numb armpits and even more weird to feel something trickle out and start to run...only to be told it came from that site. I can say that feeling an itch in the numb area is frustrating -- you feel the itch, you feel that you're scratching it, but it doesn't 'relieve' it. It's like trying to scratch your chin or nose after you've had novacaine at the dentist. You feel it, but it's like your face is rubbery and numb. *sigh* I guess it could be worse.
medi port site
slightly red, irritated and bruised
after bandages removed on 05/21/2013
drainage tube site - after removal of tube
05/21/2013
lymph dissection site
05/2013
MAY 23 -- who has a 3.95 GPA in graduate courses and a 3.67 GPA in undergraduate? that's right! this girl! I was feeling kinda blue about it (don't judge me, I'm a bit of an over-achiever *lol*), but then KK pointed out that it was pretty damn good...especially when I was diagnosed with cancer a little over mid-way in the spring semester {after having battled cold after flu after infection - no wonder when my immune system was attempting to fight off cancer}. I guess if I look at it that way, I did pretty damn good! :D
MAY 25 -- Oncologist appt was both good & bad today (5/24). He told me my potassium is low, to eat a banana every day, dr orders he said that the cyst shown in MRI is probably nothing of concern but we will monitor it and keep working with neurosurgeon too. My MUGA (heart scan) showed some abnormalities so he wants an echocardiogram next week, before we start chemo. I have a teaching day (hopefully next week) with the nurse to review chemo, side effects, etc. He is hoping to start treatment the week after; as well as herceptin treatments. Also said that it is suggested to get my gyno involved to try to preserve eggs as chemo may sterilize me and/or force me in to early menopause. As if that weren't enough, he said that after reviewing the pathology of my lymphnodes, my stage is now 3-A (not 2 as originally thought). UGH. I've been emotional all day, between crabby and crying...*sigh*
Ignorant people continue to amaze me! honestly, the best I can do is find comfort in the thought that karma will have her way with you. *sigh* Cancer is NOT something that I wish on ANYONE! When I post updates, I don't do it to make people feel bad or feel sorry for me, I do it to update folks in my life - if I called/texted/emailed each person, I would never get anything else done, nor would I stop crying. Further more, when I post updates, it is not a 'sob story', it is the truth and it sucks, but it isn't being embellished for sympathy, trust me! AND finally, I know that finding the words to express yourself can be difficult at times, but trust me, a simple 'chin up', 'thinking of you', 'stay positive', or 'love ya girl' is MUCH better than saying NOTHING at ALL! one thing that this diagnosis has done for me is to put parts of life in perspective -- for instance, realizing that there is definitely merit to not sweating the small stuff; realizing that things that seemed so important yesterday are actually kinda trivial; realizing WHO my REAL and TRUE friends are; realizing my feelings on some subjects; forcing me to plan ahead for my loved ones in case of death or incapacity; and counting my BLESSINGS in life.
MAY 28 -- I have an echocardiogram tomorrow; I hope to know more soon!
MAY 29 -- "teaching day" for chemo on Friday, 5/31 at 9:45 AM -- should answer any/all questions I have then; chemo will start Monday, 6/3 (barring any unforeseen delays)
echo this morning went well; had divinity injection (contrasting agent) also to show images better; said that my MUGA showed 48% and normal range is 55-75% (normal usage range) and that chances are the echo will give the cardiologists a better view of what's going on and the functioning of the heart muscle. I had an echo done in 2010 (they thought I had a murmur and ruled it out with an echo); my functioning then was at 55%, should still be in that same range, I would assume; tech said it's the low-end of normal, but it's in the normal range. *fingers crossed* I feel like a pin cushion though, I was stuck 5 times before they found a viable option for the injection site for the contrasting agent. Oh well. I guess that happens when you're down to one arm (still partially bruised and swollen from previous injections) and crappy veins!
JUNE 1 -- I had my 'teaching day' on Friday at the Cancer Center. It was nice to have one-on-one time with my nurse and ask questions and learn about the treatments. I start chemo on Monday at 8:30 AM. My medicine combo will cause my hair to start thinning that first week, and it will start to fall out (in chunks/patches) shortly after the second treatment. I have an appointment to see a stylist about a wig on Tuesday morning (after my Neulasta injection to boost my white blood cells) - she is going to cut my hair short and I will donate it to others. My nurse said that patients have reported the hair loss to be a little less traumatic when they have short hair rather than going from shoulder length or longer to nothing. So, we'll cut it short on Tuesday and when it starts to fall out, I will buzz it down so that it isn't completely awful looking in the meantime. K2 is joining me and will be shaving her hair off as well. My echo results came back, and I'm at 57% which is just above what they want to move forward, so here it goes..."please keep your hands and arms inside the ride until it comes to a complete stop"
JUNE 3 -- first day of chemo seemed to have gone well. we were there over 7 hours. slight headache but overall, feelin' better than anticipated. I guess time will tell I go tomorrow morning for a Neulasta injection to boost my wbc and I go to meet with the fine folks at H2H in W-ville for a free wig (*fingers crossed*) and a (free) haircut to donate my long hair to Locks of Love or Pantene Beautiful Lengths. Cutting it short will help me transition to losing my hair without the trauma of seeing long strands on the pillow, in the sink, etc.
all "plugged in" for chemo treatment #1 today (6/3/2013)
JUNE 4 -- day-after 1st chemo treatment -- so far, so good. I seem to be doing okay today. I went for the Neulasta injection this morning. I have a headache - not sure if it is allergies or a 'hormone headache' (getting ready to start my period). Nurse this morning said it could be caused by the meds yesterday too, but to try advil/tylenol/ibuprofen to see if they helped. So far, ibuprofen took the edge off (but this is similar to how I feel when I have a sinus headache and take ibuprofen, or a hormone headache and take ibuprofen...so time will tell).
I took advantage of the good morning and ran to Wal Mart after dr -- picked up some lemon candies and plastic silverware (the nurses suggested that some patients find that it helps with the metallic taste).
so far though, I admit I feel pretty good. we are going to cut my hair off so I can donate it. Then shave it off. 2ie will shave hers off too. We were going to have Hairway to Heaven do it (I stopped in and got a free wig today) but the receptionist misunderstood that I also wanted to get my hair chopped off and she didn't have a hairstylist. I may try to shape it after the donation length is cut off, but I may just shave it (depends on how short it makes it). not sure. either way, it will take some getting use to. I will be sure to capture before and after photos. xo
I received a wonderful card in the mail yesterday! THANK YOU Crissy, Chris, Zachary and Alex -- please tell Zachary that I LOVE his picture and I have it posted on my Happy Thoughts board!
I opened this again today and smiled -- I am truly blessed with amazing family and friends.
I love you all! xo
JUNE 8 -- I have been miserable (& offline) since Wednesday afternoon. The nausea, aches and illness hit me like a ton of bricks. I was vomiting, chills and sweats, but no fever. The only time I was really awake was when I was getting up to go to the bathroom. Even then, I'm not entirely sure that I was awake all the time. I am feeling a little better. I still have heartburn, a headache and joint pain and a mild stomachache, but nothing like what I had had earlier in the week. I did miss a few days though. Shutting down seemed to have been my bodies coping mechanism. I admit that I had a moment when I was in the midst of all the sickness that I thought "Oh Lord, I don't think I'm strong enough to deal with this for several more months...especially if it gets worse..." Now, I'm not saying that I am giving up or giving in in any way. I'm just admitting that I have had a weak moment and it's hard to rationalize wanting to fight to feel this way. I also know that 'this too shall pass' and I am praying that it does and that I'm better able to stay ahead of it each cycle. *sigh* Thank you all for your love, prayer and support. I appreciate the prayers. I truly do.
JUNE 9 -- busy day tomorrow -- here's to hoping I'm able to rise to the occasion! follow up with surgeon (9:30AM); Look Good, Feel Better program with American Cancer Society (10A-12P); bloodwork at 2P
JUNE 12 -- me: *whew* this medicine seems to be helping
my stomach: *gurgle* {aka - that's what YOU think!}
...ugly, ugly revenge...
*sigh* hate feeling like a stranger in my own skin
JUNE 17 -- curious -- when will the heightened sense of smell diminish? and when will my taste buds return to normal? I gagged at the smell of the saline flush today during blood work (not the first episode of a heightened sense of smell leading to gagging or such) AND I made shells & cheese and was excited to eat it -- it sounded good, smelled good, but tasted like dish soap! KK tasted it, said it was fine...so wth!? (also not the first time I have had a bizarre reaction to taste change) and 'blue juice' (blue gatorade) tastes and smells like cat pee to me. *ugh*
JUNE 18 -- is it a side effect of chemo for my legs and feet to swell? my legs are swollen from the knees down (left more-so than right, and left knee has been killing me since last Neulasta injection), my ankles are HUGE and my toes and tops of feet are swollen/puffy too. not sure if it is a side effect, or just a random coincidence...?
I'm looking for a medical alert bracelet that I can get custom engraved with allergies and such -- any suggestions on where I can purchase at a decent (lower) price? I want to get "allergies: IVP dye; iodine; shellfish" // "lymphedema" // "no bp, no stick rt arm" // "breast cancer patient" (or something similar) -- anything else I should list?
JUNE 19 -- Couple of updates:
I didn't get a call back from the dr office today. I'll try again tomorrow.
The total raised online is $2,140 (before the site takes their percentage). I am working with the patient advocate and she has a few local agencies interested in covering the difference. Right now, we are navigating through the red tape b.s.
I had a call today from SSI and the woman told me that they needed additional paperwork and releases from the dr office (I'm the one that's been calling them telling them that my staging was updated and chemo started) -- she also told me that the state's oncologist has to review my information and see how HE feels I am responding to chemo before they make a decision on my disability claim. I don't understand that. He hasn't worked with me the entire time, or know my full medical history, etc. What right does he have to weigh-in without talking to my doctors (just reviewing paperwork)? Can I really be denied disability because I am not hospitalized over my chemo treatments?!
ALSO -- did you all know that I started a catastrophic fund at PNC?
ALL donations are tax deductible – I have an EIN for those interested (for tax purposes).
Donations can be made and will not be subjected to any deductions like those online services that other companies provide.
This is an effort to keep funds available for use throughout my treatments (at least the next year) for various medical treatments and other expenses that arise as I continue to attempt to secure assistance (without health insurance as my unemployment draws to an end next week).
JUNE 22 -- I went to see the nurse practitioner yesterday...and yes, the swelling in my legs and feet is a side effect of one of the chemo drugs, but she doesn't feel that the amount of swelling is to be overly concerned about and/or adjust the drug dosage...yet... *fingers crossed for Monday (treatment round 2)*
1 treatment in and my hair is starting to really thin out...
bald spots on top of head
medi port sticking out like a sore thumb
as of 6/23/2013
1 treatment in and my hair is starting to really thin out...
bald spots on back of head
as of 6/23/2013
JUNE 24 -- made it home safe & sound --> this round (#2) was only a little over 6 hours! pics to be posted shortly
Chemo - Round 2
6/24/2013
JUNE 24 -- this one felt a little different; I felt 'drunk' (tired, speaking slowly and feeling slurred) and my chest felt tight; nurse and nurse practitioner came in, evaluated what meds were hung when I felt the symptoms (particularly the tightness in the chest), and listened to my lungs. Despite not being able to take a really deep breath, my breathing was not labored, raspy, poppy or anything to be considered about. It did go away after the next med was introduced. It honestly felt like an allergic reaction to something (whether it was something in the room, or the meds, I don't know; it didn't feel like anaphylaxis. NP did ask if I had asthma; but I have never been diagnosed with it)
swollen feet and ankles, a side effect of chemo - was told that my lungs are clear and that my swelling is not severe enough (yet) to truly worry about it.
I need to simply watch sodium intake and keep them elevated off and on...even my TOES are puffy! *ugh*
JUNE 30 -- Things that I have noticed lately...
(a) my skin is changing more rapidly - areas that become itchy, I have to be incredibly careful not to scratch raw with just a few swipes and that I have to be careful when drying after a shower not to rub certain areas (scar tissue, sensitive areas) raw while drying off
(b) the bottoms of my feet are having identity crises -- while mostly 'normal' with mostly dry heels, they are now overly sensitive and almost raw in soreness when I walk, and the heels are REALLY overly dry
(c) my hair is coming out all the time now - but it is the short little pieces so it's not QUITE as traumatic, but it's so darn itchy when it finds it's way into places
(d) my mind is slipping - I can't remember things that should be easy, I have found myself DUMBFOUNDED by simple tasks {I guess that's what they refer to as "chemo brain"?
(e) I have started some menopausal symptoms -- this SUCKS -- I honestly UNDERSTAND and SYMPATHIZE now with women that have experienced it. I normally get some crazy hormone fluctuations around my monthly visitor (I have PCOS so my hormones are slightly unpredictable anyway), where I'll have a noticeable spike in temperature for a day or two, and 'mini' hot flashes, but I have had some extreme hot flashes now and several night sweats. UGH. Mother Nature is a cruel mistress, I tell ya! I'm hopeful that these are just temporary and that my cycle returns to normal after all the treatments are over, I am just NOT ready for menopause on top of all of this!
Thinking that I need a superhero name -- after all, I have been knocked down and stood back up, I have been sliced and diced, I am fighting cancer, and have been, and will be radioactive from treatments (seriously, folks) AND I'm thinking that all of these chemicals could possibly leave me with a superpower (maybe that's just wishful thinking...but a superpower would be a nice 'parting gift' *haha*)
JULY 1 -- I had a rough night last night. My hair has been thinning out considerably over the last week or more, but I got in the shower last night and it was...surreal.
I was washing my hair/scalp as I do....and I pull hands down....and I had clumps in my hands, hair everywhere as it was literally running off of my body with the water. Oddly, it isn't body hair or facial hair (although my eyebrows are thinning a lot), but my hair on my head. I bent my head under the water and just rubbed my scalp gently with my hands...and MORE came off...and still MORE...I got choked up, but was more 'freaked out' by it all than anything.
I wanted to keep as much loose hair off of my body while drying off, so I put a towel around my head (twisted, turbin style) {worked better in theory, by the way}. When I was done drying off, I let down the towel turbin and really fully expected to see my long wet hair, just as I always did....between standing in the shower, covered in my own hair, and nothing being in the towel, I just lost it.
I cried for a good half hour. I have an appointment for blood work today and a follow up with the oncologist Friday. I intend to ask questions about my changing skin and such, and a few patches that I have noticed that are 'different' -- I'm hoping it's due to the chemicals being pumped in my body and nothing else. I don't know if I can handle anything else, but come what may, we'll find a way.
*KNOCK ON WOOD* It seems as though the majority of the nausea passed, although I'm still taking my anti-nausea meds in the morning to pass that queasy part and in the evening to settle my belly before bed (sometimes in between, but less often than it has been).
went to get blood work and asked about the weird taste in my mouth and feeling in my throat (hoping that the strep bug isn't biting me)...and after a very long wait, the NP told me...I have thrush! *groan* apparently chemo ruins the good AND bad bacteria in your mouth and makes you more susceptible to all types of infections and problems...including thrush! *smdh*
JULY 3 -- I just want to say....while I KNEW it was going to happen, it is still a bit surreal and heartbreaking to lose my hair. I'm so happy to have the love and support that I do...and I am happy to be alive to be losing the hair. I realize that it is just 'window dressing' and I know it will grow back...eventually.
yep, losing more hair 7/3/13
side view
top view
top/back view
JULY 11 -- I went to Wal Mart last week and saw a lot of shoppers out (it was the beginning of the month, after all) - and I overheard a VERY PREGNANT GIRL (she looked quite young--maybe 15 or 16) arguing with her MOM about her WIC and how she would HAVE to breastfeed to get more WIC....I cried (in frustration) after I passed them. How can someone WILLING to get pregnant (or "MISTAKENLY" get pregnant) qualify for and manipulate the system? BUT those that have cancer or some other terminal disease DO NOT qualify for help!? I still haven't been able to secure insurance or help for medical bills or mortgage...it's not "fair" at all. We're already dealing with way more than our share of crap from the time we find that lump....*sigh*
JULY 15 -- Today is my 3rd treatment..."halfway point" of chemo...*fingers crossed* I just have to finish it... herceptin & radiation & pray cancer is GONE!
My right arm is nice & swollen this morning thanks to lymphodema. Supposedly "normal" but still a weird feeling & sight to see arm swollen & what looks like a giant hive on boob. It eventually goes down & fluid redistributes.
JULY 17 -- For all those wondering, chemo #3 went well (Monday, 7/15)...I got sleepy again this time and nodded off several time throughout the treatment. They say it’s the pre-meds (1 being a large dose of benadryl). My Neulasta shot kicked in today (lucky me!) and I’m achy, sore, and just TIRED! I have been taking anti nausea meds since Tuesday morning (earlier than before, but so far, so good *fingers crossed*). I slept A LOT today – they said that’s part of the anti-nausea meds because they can/will make you tired. I guess it’s better to sleep through it all as much as possible. It’s just weird to “miss” days, or chunks of days.
3 more chemo treatments to go....roughly ending mid-September. Radiation should start early October. Herceptin treatment will continue every 3 weeks for the rest of the year (through next June).
Can't wait to have this all behind us! xo
JULY 21 -- *ugh* just as the nausea and achiness subside, the palms of my hands and soles of my feet are driving me insane. I have noticed changes in my skin over the last few chemo treatments, but these changes/pain is 'sudden'. My palms feel waxy and yet dry and flaky and like they are near raw when I wash them. The soles of my feet are burning and sore -- like I walked across a really hot surface -- there are also spots that feel raw. KK has checked and said that the soles look just fine...dry, but fine. PLUS I think my thrush is back. I am using my magic mouthwash to get rid of it before it truly flares up. Wondering...is it possible that the heavy, repeated dosage of the anti-nausea meds over the last few days have caused the thrush? Nothing else has really 'changed'. *shrug* guess we'll find out Monday (bloodwork appt - but I will ask about all of these changes).
AUGUST 1 -- I received my genetic testing results -- but have not discussed with a doctor yet -- but I do know that my results indicate that I do not carry the BRCA gene! YAY! #littleblessings
AUGUST 5 -- Chemo day (treatment #4) -- Getting fluids...waiting for bloodwork results...then starting pre-meds & chemo
We spent over 8 hours at the cancer center today between treatment time and wait time to see the Dr (regular follow up visit with Doc himself, and not NP); right around the time I took the pic that I posted, I started getting queasy...stomach churning, mouth watering, temperature rising...I was SURE I was going to get sick! Nurse came over to flush my port, do a blood draw (routine CBC panel before treatments) and get me "plugged in" for some fluids as I await my test results/pre-meds/chemo, etc. I mention the nausea and that I feel like I might get sick. She said that she would talk to the lab about possibly tweaking my pre-meds to help with that; she also mentioned possibly adding Ativan to my pre-meds to help with a fairly common condition among chemo patients ("Anticipatory Nausea"), she went on to explain that she has worked as a Nurse in Oncology for nearly 20 years and that it is a common condition, especially with cancer patients, because you know your body is about to be subjected to hellish conditions. She said Ativan is primarily for anxiety but also works WONDERS for the nausea associated with this type of condition. She had them add it in and it made me incredibly sleepy, but I'm willing to try it if it could make the experience easier overall.
On a bright note, my good friend Lynda stopped by to say hi on her way to her own Dr appt today. It was very nice to see you my friend! {even if I was a bit groggy from the drugs!}
Finally, KK & I met with my Oncologist after my treatment was completed and he assured me that I am right on track with my treatments. I asked about my genetic testing, and he gave me a rather odd answer, stating that yes it is true that I don't have the BRCA1 or BRCA2 genetic mutations, but that given all the other factors we DO know about my breast cancer, he is wondering if there isn't some other type of genetic link out there that is not accounted for in that panel. He reiterated the fact that it is rare for someone my age to present (suddenly) with such a large tumor, with HR2 positive markers and KI at 97%. BUT he stayed positive overall saying that I was just past my half way mark of chemo treatments and then after a short break, we will start the radiation treatments as we continue the Herceptin treatments. He said that once those were completed, we would run a battery of tests similar to the ones when we began to indicate whether there is still ANY cancer cells present and where. He also said that I would be getting another muga scan soon and continue to get one every 3 months or so throughout the continuation of the process to ensure that my heart is still healthy enough to endure the process. {routine procedure}
He also told me that I am very brave to go through all of this and face the treatments and the unknown. That he has the utmost respect for his patients. He said, "While I can tell you what you will face, I have absolutely no idea how it feels to be in your shoes and go through all of this. You are so very brave." I thought I would start crying, but thankfully, I held it together! LOL
He told me to go home and put my head down and rest....right now, I'm relaxing with my feet up (recliner sectional piece of couch) and updating you all....but I will be laying down here shortly
Please continue to say a prayer that ALL of these trials and tribulations mean that the Cancer will be GONE from my body...and NOT TO RETURN!
Love you all! xo
AUGUST 6 -- yesterday, when the doc was talking about my 'stats', he also mentioned that most of his patients present with 1 - 2 lymphs positive, and I had 4 return positive...just remembered that! AND he is going to have his office staff contact me regarding a local lymphedema clinic to address my swelling, pain, motility issues, etc (mostly right arm)
AUGUST 10 -- Local 4-H group (Boots & Britches) donated bags to all patients at chemo center on Monday. There is a cotton drawstring bag, a variety puzzle book, pens, note cards & pad, purell, tissues, candy & gum, lip balm, a squeeze ball & a bottle of water & crystal light packet...and a handmade get well card. VERY cute & thoughtful! I dropped off a thank you note to the patient advocate on Tuesday (when I went for my Neulasta injection) for the group.
AUGUST 13 -- went for weekly blood work (CBC panel) yesterday -- I was there for OVER 2 hours :-S *groan* everything is really low -- especially my white blood cells and platelet count. Nurse seemed like she wasn't going to discuss with me (dropped my copy on my lap, removed my needle and put dressing on me and started to walk away), so I started asking questions (normally, my numbers are normal, maybe slightly low, but not nearly as low across the board as it came back today). She seemed slightly agitated, but walked back over to me and said that my Dr saw the report and knows about how low my levels are, wants to see what it comes back next week. She said that I shouldn't be around people, especially sick people. Also said to be wary of any unusual bruising or bleeding, colds or infections that crop up. Um...hello!? what about the thrush that I can't seem to shake? *grr*
AUGUST 14 -- *sigh* I need to vent -->
I'm truly tired of being sick and tired...PLUS fighting so hard to receive any type of 'help' -- someone seriously please tell me...
how am I supposed to job hunt when I can barely stay awake through my day, and if I AM awake, I'm in the bathroom!?
if I do get an interview, how do I explain that I can't interview in a group setting, unless I can wear a mask, due to health concerns? Or, how do I ask for a flexible schedule so that I can be at home on my bad days and stressed out in an office environment on my good days?
I am seriously at my wits end! I have been denied medical coverage, any type of help/assistance...despite my emergency unemployment being decreased AND receiving notification that despite the fact that this level should have run 10 weeks, it will end next week (6 weeks early) unless they approve my application to renew it?
I've been denied disability and SSI because according to some f'ing doctor that I have never met, and who has only seen my stats through the early part of my treatments has said that I am fine and won't be out of work for more than 12 months (as long as I can find a flexible environment where I don't have to use my right arm - due to lymphedema -- yep, that's gonna happen you ass hats!) OH and the reasons I was denied were NOT reasons that I claimed on my initial application for NEEDING to receive disability or SSI (WHO then has determined that those were my conditions, when I didn't LIST THEM AS SUCH?!)
yep, and I'm crying now....more out of frustration than anything else, but...damn. *groan* and there goes my stomach...looks like I'm going to be taking my anti-nausea pills again, regardless...
Beautiful flowers received Saturday (8/17/13) from my beautiful cousin, Karen! Thank you! they DEFINITELY brightened my day! :)
AUGUST 20 -- I had blood work yesterday. My WBC are the same (3.1) and my platelets have gone from 95 to 111. Nurse said that I have to have a minimum of 3 WBC and 100 platelets to have my chemo next week (Monday, 8/26). *fingers crossed* (only because I want to get this stage done & over with LOL)
AUGUST 21 -- I received a very sweet card today from a long-time friend Crissy & her family -- thank you for keeping me in your thoughts & prayers! xo
...they're b-a-c-k...
swollen/puffy feet and ankles
oh the joys of the last few days before my next chemo session
(8/22/13)
AUGUST 23 -- two observations from today -- (1) I have had an increasing number of muscle spasms/twitches this past week -- mostly eyelids and thumbs -- but odd, recurring and long-lasting (up to 10-15 minutes at a time); (2) I woke up with a surge of energy and resolve to get at least one 'project' done today...I was about 25 minutes in when my energy level plummeted...at least there was no clean up before I camped out on the couch...again.
AUGUST 26 -- Chemo #5 today...next to last of these types of treatments. Waiting on bloodwork to tell us my counts before starting pre-meds & chemo...getting IV fluid for now. Let's hope my numbers are 'good enough' to proceed. The finish line is FINALLY in sight!
CHANGE OF PLANS! My numbers are too low for treatment today. My platelets are lower than the first dip and my ANC (?) is too low too. Said those are indications that the chemo is still working. Continue with overzealous handwashing, no fresh produce, no crowds, no sick people, etc etc. NOT thrilled that my 'finish line' for chemo is being moved...but I can't really control this...*sigh*
right hand fingernails (as of 8/30/13) --
notice my middle and ring fingers
odd 'pockets' forming underneath the nails
left hand fingernails (as of 8/30/13) --
notice my index and ring fingers
odd 'pockets' forming underneath the nails
Unfortunately, I had to miss our family reunion today due to my low immune system I just received this picture a few minutes ago...how sweet! I miss you all too! Wish I could have been there!
L-R: my Aunt Beth, cousin Devon, my Mom (holding sign), cousin Katie, Uncle Tom, Uncle Bill, and Aunt Terri
Just got the green light for Chemo #5 today (9/3/13)!
Bloodwork improved (very slightly) to the absolute minimum that they want to proceed. *fingers crossed*
I have a feeling I'm going to need some prayers to make it through this round.
SEPTEMBER 4 -- 5 days to receive a call from one local lawyer, only to tell me that his office can't assist me with my legal needs at this time. SERIOUSLY!?! *frustrated* I have a call in to an office in Columbus now, to see if they will assist me with my legal needs; at least those folks are not in this small-minded, good-old-boys-network that we live in in the Ohio Valley.
SEPTEMBER 5 -- I went for my Neulasta shot yesterday (helps your body build and boost your immune system in the 'after math' of your chemo treatment) and I asked the nurse if I should even consider going to Wal Mart (I had a small list starting) given my numbers from the last few weeks. She said that yesterday was actually the best day for me to consider going because my numbers were 'decent' (they were the absolutely minimum for them to move ahead with my treatment the day before, which is just slightly above what I had the week before when I was denied...but anyway...). I wore my rubber gloves (those carts are gross), but decided against my face mask (it was quite warm after all, and as the nurse kindly pointed out, I would probably get quite a few 'looks', and as long as I wasn't hugging & kissing strangers or touching things and putting my hands in my mouth or around my face, that I should be fine without it). I DID meet 2 lovely pink warriors who have just finished their treatments -- one just finished her radiation and is holding study with her Herceptin treatments; the other had just finished her 5th reconstruction surgery after a bilateral mastectomy. Both approached me and both offered candid advice. It was great to know that there IS indeed LIGHT AT THE END OF THE TUNNEL...and it's NOT a train!
SEPTEMBER 6 -- Went today for my 3-month follow up echo cardiogram (supposedly routine for a breast cancer/chemo patient); I see my medical oncologist Monday AND get my weekly bloodwork done to check my levels. Please say a prayer that my levels are 'good' and that my output is holding steady.
SEPTEMBER 10 -- heard this song again today and it hit me hard...perhaps it's facing and accepting your own mortality that puts it all in to clearer perspective, but "...when you figure out love is all that matters after all...it sure makes everything else seem so small..."
I've been a pretty 'good' patient so far, learning NOT to turn to google for answers, but I'm increasingly curious about the Herceptin -->
According to the drug’s website (www.herceptin.com), Herceptin is approved for the treatment of early-stage breast cancer that is Human Epidermal growth factor Receptor 2-positive (HER2+) and has spread into the lymph nodes, or is HER2+ and has not spread into the lymph nodes. If it has not spread into the lymph nodes, the cancer needs to be estrogen receptor/progesterone receptor (ER/PR)-negative or have one high risk feature. High risk is defined as ER/PR-positive with one of the following features: tumor size >2 cm, age <35 years, or tumor grade 2 or 3.
I meet several of those requirements – the spreading in to the lymphnodes, the HER2+ (aggressive) cancer, the size of my tumor, my age being under 35 years, and my tumor grade - so my Dr thought it best to add Herceptin to my treatment and we began it WITH the Chemo every three weeks.
I have HER2+ breast cancer, which means that I have more HER2 receptors (a type of protein) than normal breast cells. HER2+ breast cancer is considered ‘bad’ because it is considered fast-growing and aggressive. Herceptin is supposed to help as another layer in protection against fighting the cancer and receptors involved.
I have had about 1/4 of the recommended treatment so far (Herceptin is typically a year-long course of treatment, every 3 weeks).
Let’s pray that my numbers come up naturally & I can continue with Herceptin, or that if they don’t, the bit I had of it was enough to kick the cancer along with the chemo and radiation (ahead).
According to the drug website, Herceptin treatment can result in heart problems, including those without symptoms (such as reduced heart function) and those with symptoms (such as congestive heart failure). In clinical trials, the risk and seriousness of these heart problems were highest in people who received both Herceptin and a certain type of chemotherapy. Your doctor is to evaluate your heart function before and during treatment; which we did MUGA scans and echocardiograms prior to beginning treatment and again just last week (to happen every 3 months). It is recommended that the Dr stop the treatment if there is a significant reduction, and he HAS put it on hold, until we learn more and see if stopping it allowed for the heart muscle to recover adequately and then move forward.
SEPTEMBER 10 -- Oncologist is pleased with my progress overall, but wants me to meet with a cardiologist. He said my recent echo cardiogram revealed low ejection fractions, showed I'm below "normal" range (10% lower than initial test showed) so he will put a hold on herceptin until it goes back up and have me meet with cardiologist. Until they know more, or it improves, my herceptin is on hold, not my final chemo, just the herceptin. Supposedly if you stop the herceptin, the numbers will go up naturally. Hoping for that! Final chemo is still looking like a go (as long as my numbers stay good) and then we move to radiation treatments. *fingers crossed, prayers being said*
I hope my neighbors realize how grateful I am that they have it in their hearts to take care of my lawn. That was one less thing to weigh on my mind over the past few months. I am so very thankful to have thoughtful people around me.
SEPTEMBER 23 -- LAST chemo today! Woo Hoo!
LAST chemo today! Woo Hoo! :)
Just a little sweet something to celebrate this milestone!
Wearing my princess crown
LAST chemo! :)
my dear friend Crissy's son, Zachary, made the crown & mailed it to me. I thought it was perfect for my last chemo!
