At the ending of my hard chemo's I decided that I wanted to make and
take a chemo scarf to each of my remaining 11 herceptin chemo's. So far
I've been able to do that. This last chemo I took 7 scarves. With only 3
chemo appointments left I have changed my plan. I would now like to
take with me to my last appointment on March 20th one scarf for each
chemo treatment I received over the past year. That would be 17 scarves,
so here's where you come in! I'm looking to see if anyone want to
donate fabric to me, I need about 30 inches by 30 inches, and that'll
make 2 scarves. I am planning to buy some of this fabric myself so I can
find some cute fabric I think women would like. Do any of you sewing
friends have fabric laying around that would make a cute scarf for a
chemo patient? Let me know if you do and I'll come pick it up, unless
your one of my friends who lives out of state. :) This project is going to be so much fun and I look forward to working on it over the next 8 weeks!
In the beginning of all my treatments I was told that I would have 17
chemo treatments; 6 of them would be the hard chemo with herceptin and
the remaining 11 would be herceptin only treatments. Last Friday,
January 16th I had my 7th chemo that was herceptin only. My original
appointment was on January 12th, but because we started a new health
insurance program and didn't have our ID cards yet (or a member ID #), I
needed to cancel my chemo. Utah Cancer Specialist were excellent to
work with, once I had a member ID # they quickly got me preauthrized and
my chemo treatment re-scheduled. Because of the re-schedule I didn't
get to see my doc, instead I saw Rick. My weight today was 143.
Blood pressure was low, which is usual for me. My Dad was my chemo buddy
and was allowed to come back with me for my port access. He had brought
along his go-pro and camera and was able to video the port access. Up
until this point I wasn't able to have someone with me for the port
access (well, except for one other time!). I'm really glad to have a
video of this to remind me of what I had to go through on treatment
days. This may seem silly, but this whole cancer killing/fighting
process fascinates me, and it'll be nice to have these pictures and
videos (of the whole process, not just the port access). You know, just
in case I forget what it was like.
My blood work: White Blood count- 2.9, LOW!, normal is between 4.2-10.5 Red Blood Count- 4.03, LOW!, normal is between 4.04-5.48 HGB (Hemoglobin)- 11.9, LOW!, normal is between 12-16 HCT (Hematocrit)- 36, LOW!, normal is between 38-48 Platelets- 173 (this jumped from 135 at my last treatment!), normal is between 140-450 Neutrophils-
1.4, LOW!, normal is between 2.0-6.9 (over the past 4 months this
number has only increase by 1/10th of a percent. slow and steady and at
least on the rise)
Today we discussed with Rick my achy joints.
He said that this is most likely caused from going through this whole
treatment process. My body has been through a lot, from chemo's, surgery
and radiation. We aren't going to do anything to treat my symptoms,
other than exercise (which in my book means, stay active and don't sit
around). We talked about my foggy chemo brain and he said that it
usually takes about a year after treatments end to be back at 80% of
where I used to be. This wasn't what I wanted to hear, I get really
frusterated and discouraged because I don't feel normal. He also said I
may never be completely back to the way I was before. Double bummer,
lets hope that's not the case for me! Before chemo I loved being
involved with my kids schools and loved a good brain stimulating
challenge, but now I feel overwhelmed so easily. With radiation
complete now is the time I begin taking tomoxifen. We discussed possible
side effects, which would be hot flashes, leg cramps, and uterine
cancer. I will need to make sure I have my yearly girl visit to check
for any abnormalities, and for hot flashes I can take vitamin E pills.
Tomoxifen is a once a day pill and I will take it for 10 years. It used
to be something done only for 5 years, but they are seeing even better
results by extending it to 10 years. If I'm going to have side effects
he said I would notice them right away, and today I took my 5th pill and
so far no side effects.
With only 3 more treatments I scheduled
out my remaining appointments. Did you hear me?! I only have THREE more
treatments!! In about 9 weeks I'll be DONE with chemo treatments!! A
couple of nights before this last treatment I looking at my calendar
with Dave to see what the dates for the next 3 appointments would be,
and when I discovered the date of the final appointment I got emotional!
My final chemo date is March 20th, that is the day I was diagnosed last
year. How appropriate to be finishing on the exact same day! Typing
this in my journal makes me emotional still. The feeling I feel is one
of complete happiness; that I have been able to survive this whole
ordeal! To say I have been supported by all you wonderful friends and
family is an understatement, I feel like you have carried me more than
supported me through this. The greatest blessing that may come out of
this, besides my life, is the love and friendship that has been
strengthened with each one of you. Thank YOU!! So, with chemo coming
to an end I think a party is in order!! Here are my thoughts, I would
love for any of you that would like to be at the chemo center when I
ring the bell to be there! You wouldn't all be able to sit with my
during treatment, but you could be out in the waiting area and we'll
come get you to watch me ring the bell. Before I can do this I need to
check with the cancer center to see how big of a 'party group' they'll
let me have. :) I'm thinking of reserving my church later that day to
have a party! Do something pot luck style so you can come and enjoy
some goodies and stay and visit. My daughter Dallas said if we do this
she will have her friends help her decorate the gym. I'd love your
suggestions and ideas too! So start sending them to me!
Being diagnosed with cancer just before Easter meant that I didn't
get to do my usual chocolate dipped eggs. For those of you who know me,
you know that I LOVE dipping chocolates and especially Easter eggs! For
Christmas I dip chocolates for my family, it's a tradition that my
Grandma Baker started way back! Now that she is older and not doing any
candy making or chocolate dipping I have taken on the job of doing this
for all my siblings, their kids, my mom's parents and a few of my Dads
neighbors. This project is something that takes about 3 weeks. I got
started with the process on December 3rd following one of my radiation
appointments. It felt great standing over a hot stove taking in the
yummy smells of candy cooking on the stove. The first day I was able to
make all the caramel needed for turtles and homemade twix bites. The
following day I made a large batch of caramel. The plan was to spend the
following Saturday dipping with the help of my girls and Dave. Saturday
rolled around and after getting Bradley off to a cub scout activity we
began the long process of dipping. By the time Bradley was back from his
scout activity we were still up to our elbows in chocolate. Dave
decided to take the boys for a bike ride to keep them entertained (and
out of my hair) while the girls and I continued to dip. Following their
bike ride they returned home to get gear for the skate park. About an
hour after they had left to the skate park I reached a point in my
dipping where I needed to take a break to get the next batch of candies
ready for dipping. It was during this short break that I got a phone
call from Dave asking what hospital emergency room he could go to with
Bradley, whom he was sure had a broken leg. Being a Saturday our
insurance was closed so I did a quick search on the internet and told
him he could go to St. Marks. At this point I stopped getting ready for
the next batch of dipping and left in my own car to meet them at the
hospital. Dallas came with me so she could bring Colter home in my
vehicle. Bradley had an X-ray that confirmed he had a broken bone,
actually 2 broken bones. He broke both the Tibia and Fibula, and because
of the nature of the break the tendon at the top of foot stretched and
broke the bone on the top of his foot. With a break like this they
consulted with an orthopedic surgeon at Primary Childrens, and then
decided it was best that he be transported by ambulance to Primary
Childrens to be seen. The surgeon there wanted to be see him himself to
decide if Bradley would need surgery. Dave drove our car and rode with
Bradley in the ambulance.The ambulance ride was VERY bumpy, and after
almost being t-boned by another car we finally made it to Primary's.
They were quick to get us in a rooom, but the Dr. was slow to see us.
Turns out that because the weather had been so nice that day there were a
lot of broken bones and the only on-call orthopedic surgeon was busy
taking care of other ER patients. The nurses were good to take care of
Bradley while we waited. Sometime around 10-11pm the surgeon came in to
take care of Bradley. It was decided to do conscious sedation, set the
bones and put on a cast; no surgery. But because they were doing the
cast so soon after the injury and with his leg swollen he would need to
stay in the hospital to make sure he didn't get 'compartment syndrome',
which is the leg swelling inside the cast and causing too much pressure
resulting in insufficient blood supply to muscles and nerves. This would
require immediate surgery. By 2am he was taken to a hospital room and
at about that time I drove home to get some sleep. The following morning
I was awoken by a phone from Dave saying they were discharging Bradley
and to come and get them. Bradley came home with crutches and some
really good pain pills. He was pretty out of it for a couple days and
didn't move a whole lot. I was able to go pick up his wheelchair as this
was how he would be getting around for a while. 3 days after coming
home from the hospital we went back for a follow up visit and everything
looked good so they said he could go back to school. Our elementary
school was great about getting everything ready for him to come to
school in his wheelchair! Bradley was excited to go back, and truthfully
I think he was mostly excited to show off his new wheels. Bradley
during all of this was a really good sport! Dave and I took turns in the
morning getting Bradley to school. After school I picked him up; the
novelty of this was short lived for me as the school parking lot at the
end of the day being a nightmare! Bradley has since learned to get
around by scooting on around on his bum in the house. He hates using his
crutches and the wheelchair in our house doesn't work very well. 10
days after breaking his leg we took him back in to get a new cast, the
swelling had gone down so much he could wiggle his leg in his cast,
which was very painful and not good. His new cast was tighter and went
higher up his thigh and was VERY PINK! He loved his pink cast! 5 weeks
later (this past week) he was taken in for a shorter cast. His new cast
stops just below his knee and is bright hunters ORANGE! :) He has a shoe
he straps to his cast so he can walk on it. However he is very timid
and doesn't want to walk on it yet. He's afraid it's going to hurt and
his muscles are pretty weak. Dave and I keep encouraging him to try
walking oh his leg, hopefully he'll get the hang of it soon! Tomorrow
I'm sending him to school with only his crutches. Thank goodness for NO
snow, right?!
Many of you were so kind to Bradley and our family
during this whole nightmare! We are so grateful for the kindness shown
to us! We loved all the visitors, love notes and goodies! Thank you for
your love and prayers! Bradley still has a long road ahead of him but he
is expected to return to his normal self! Next month we go back to get
this cast off and then he'll wear a walking boot for about another
month. If all goes well it looks like he'll be cast and boot free by the
time I have my final chemo! Another reason to celebrate!!
Procrastinating my journal updates was not a good idea. While the reason
I put it off seemed logical, the amount of brain power to come up with
my original thoughts and feelings is going to be very difficult. I think
at best, I'll just be journaling what was going on this month. Any
random thoughts are a bonus. December 1st I had my final physical
therapy. I was able to get my full range of motion back! I loved my time
at physical therapy and loved meeting the people there. I was the
youngest person there during my appointment times, and most of the
others were there for knee or foot surgeries. There was one guy (can't
remember his name now, dangit!) that was there the same days and time I
was and we loved teasing each other about who got to use the equipment
first. As we got to visit more each time I came to learn he worked at a
gun range, so it was fun to talk about shooting 'big guns'. I remember
him thinking it was pretty humorous that I liked shooting guns, said I
didn't seem the type. Whatever that means! December 1st, again- I had
a radiation treatment followed by a herceptin chemo. Today my chemo
buddy was my friend Sarah and her cute little baby Theo. The radiation
appointment went pretty quick! I showed up 15 minutes early to get
dressed in my gown and once I was taken back to the radiation room it
was fast. Getting me set up on the table and all lined up took only a
few minutes and when the radiation started I was radiated in 5 different
places, each spot for only 5- 30 seconds. Once radiation was done we
moved over to the chemo side of the office. Sarah taught me some new
card games and Theo sat very content in his stroller for most of the
time. December 1st chemo stats- White blood count: 3.0 (normal is 4.2-10.5) Red blood count: 3.95 (normal is 4.04-5.48) HGB (Hemoglobin): 11.9 (normal is 12.0-16.0) HCT (Hematocrit): 35.6 (normal is 38-48) Platelets: 171 (normal is 140-450) Neutrophils: 1.2 (normal is 2.0-6.9)
Yesterday I met with the Radiation oncologist to get my mapping and
tattoos done. I first met with the doctor to go over what to expect and
side effects of radiation. My radiation appointments will be every week
day at the same time. I will see the doctor only once a week to go over
how I'm feeling and to see if we need to make adjustments in my
treatment. Each radiation appointment will last about 20 minutes.
Getting radiation is only about 7-8 minutes, and the rest of the time is
spent getting lined up on the table and having several people (dr. and
nurses) make sure I'm lined up correctly before they begin radiation.
For the first 3 weeks I may not feel much different, but by the end of
the 3rd week I may start feeling sunburned and tired. Once the redness
begins it will only increase and get worse. I can use aloe vera gel,
burts bees aloe after sun cream or a special radiation lotion. These
lotions will only help relieve the burning feeling. I need to drink LOTS
of water while going through radiation, as that will help with the
burning and redness too. I will have 25 radiation appointments, which is better than the original 30 that they had planned. That was good news! Yesterday
I had my mapping done so that the computer knows my body contours. I
also received my tattoos, there are 4 in all, one under each arm pit by
my side and two down the middle of my chest. The tattoos are little
black dots and they're not very noticeable.
Side effects of radiation: *Scarring
of the muscles in the radiated area. For the rest of my life I'll have
to do stretches to keep my muscles limber in that area. *Lymphedema is increase by 1-2% (with surgery alone I have a 25% chance) *I
need to use hot pads when taking food out of the oven so I don't get a
burn. Healing is harder on the radiated side after radiation. *Carry
less weight on the cancer/radiated side. Example- don't carry all my
grocery bags in all at once in my arms, take multiple trips in instead. *Wear gloves when gardening or working in the dirt so as to avoid a cut and infection on the cancer/radiated side. *Treats cuts more seriously as healing will be harder. There
is a small chance of heart disease because of radiation. To try and
prevent this they will have me take a deep breath during radiation and
hold it for 20 seconds so that the distance between my chest tissue and
heart are farther apart. While holding my breath they'll do the
radiation. *Radiation will make my skin very tight and brittle.
Because of that there is a 25% chance that my reconstruction surgery may
fail on the radiated side. There are some procedures that can be done
to minimize this, but there's always a chance that my next surgery may
not be a success.
My first radiation appointment is this coming
Monday, November 24th at 12pm. The plan is to do a dry run before they
do the real radiation, so next weeks appointment will be both a dry run
and a real radiation appointment. Next week I'll have radiation on
Monday, Tuesday and Wednesday. They are closed on Thursday and Friday so
I won't have another radiation until the following Monday, December
1st, which is also a herceptin chemo. If all goes as it should I'll get
my final radiation on December 31st.
With each change in my
treatment plan I get nervous. I've been told that radiation is easier
than chemo, but I'm nervous none-the-less. Please keep praying for me!
Pray that I can have the strength I need and that I will stay healthy!
Thanks!
Last Friday I had my 5th Herceptin chemo. Only 6 more to go! I'm so happy that this chemo treatment is so easy! My chemo buddies today were, my Dad, my brother Ben and my son Bradley. Three very special people in my life! We
saw the P.A., Rick. The visit was pretty quick with him as we didn't
have a lot to discuss. I asked him about long term side-effects that I
may have because I've had chemo. He said that most of my side-effects
would have gone away when chemo was complete, with the exception of my
chemo brain, that may take up to a year to improve. My blood work is
still low, but its holding steady, and that may take some time for my
body to 'bounce' back. Because I've had chemo I have a 1-2% greater
chance of getting lukemia in my 60's than someone who never had chemo.
Chemo Stats: Weight- 137 White Blood count- 3.3 (normal is 4.2-10.5) Red Blood count- 3.93 (normal is 4.04-5.48) HGB- 12.4 (normal is 12-16) HCT- 36.6 (normal is 38-48) Platelets- 168 (normal is 140-450) Neutrophils- 1.3 (normal is 2-6.9)
The
wait wasn't too long to get back into the chemo room. Once we were
settled into our comfy seats the chemo went pretty quick. Bradley was
very attentive to our food and beverage needs. He loves the kitchen nook
in the chemo room and was great at keeping up set up with snacks and
drinks. We played Uno to pass the time. This appointment was the fastest
one yet! My next 2 chemo appointments I will NOT see a doctor! I'll
have my port accessed and then start the chemo right away. Sounds
wonderful to me! By my next chemo on Dec 1st I should have started
radiation, so I'll have a chemo and radiation back to back. I have my
appointment scheduled in the morning so that I can have radiation
immediately following the chemo. I'll know more about radiation this
coming week...which leads me to my visit with the Plastic Surgeon. I
met with Dr. Agarwal yesterday. He is happy with the way things looked,
but wanted to do one more fill to make sure the skin was stretched
enough. The fill was double what they have normally done. (The pressure
is great and today I am sore!) He gave me the green light to get in for
mapping for Radiation. Final surgery to remove the tissue expanders is
usually 3 months after radiation ends, so we're looking at final surgery
in March/ April. I asked if he would remove my port during the final
surgery to save me from being under anesthesia two separate times, he said
as long as I'm done with my port he can remove it. Today I was also
given the go ahead to start driving again. 8 weeks of not driving was
pretty hard! But those 8 weeks meant Dallas got to drive herself to and
from school, which I know she has loved! Looks like it's back to riding
the bus for her :( I have no follow-up visits with Dr. Agarwal. I will see him again once radiation is complete.
I
called to schedule my appointment for radiation mapping (getting my
radiation tattoo's). I have an appointment for this coming Tuesday.
Mapping takes a couple of hours. I'll know more about radiation and when
my 1st appointment will be after this coming Tuesday.
I am
currently going through physical therapy. I found a place close enough
to home that I can walk to and from my appointments. I love the
exercises they have me doing and my range of motion is improving a lot!
I will continue having physical therapy until my range of motion is
back to where it needs to be. They have me doing exercises at home and
those exercises will continue during radiation to keep my muscles
stretched and limber.
I am enjoying the tea's I received last week! And I'm loving the love notes I get in the mail! Thank you! I love you all!
Update on surgery healing first... Many of you wanted to know why I
was hosptalized last week. Here's the short answer: I had been weaned
off a med that I should have not been weaned off of, which was causing
my to be nauseated and throw up. Once we got that medicine back in my
system (which took 48 hours) I started feeling better. I am currently
feeling pretty great! Over that past 2 weeks I've been doing a lot of
nothing! Just resting and taking pills. Recovering from surgery has
taken longer than I though but I don't want to overdo it and end up
causing problems in my healing. A HUGE thanks to my neighbors who've
come over and helped with dishes, getting me lunch and helping with
house work! It's hard for me to sit back and watch you all do this work
for me! I want to be doing it myself, and I will be, ONE day! Yesterday
I stopped taking pain meds, which has been nice. I haven't needed any
and can tell a difference in the way I feel by not taking them. I'm
feeling more alert and great!! I am however not stopping with the
anti-nausea meds. Those will stay on board for another week or two, or
as long as it takes to finish filling my expanders.
Now on to today's chemo... Stat's first: Weight- 134 White Blood Count- 3.5 (between 4.2-10.5 is normal, so just a little low) Red Blood Count- 3.75 (between 4.04-5.48 is normal, so just a little low) HGB- 12 (between 12-16 is normal, so I'm right on!) Hematocrit- 35.9 (between 38-48 is normal, so just a little low) Neutrophils- 1500 (between 2000-6900 is normal, just a little low) Overall
the doctor was happy with my counts. He did say that with radiation my
counts may be affected just a little bit, but again he wasn't too
worried.
*Today's chemo buddy was my youngest brother Benjamin.
It was nice to have him along! He asked a very good question to the
doctor today too! He asked about my 'total and complete response to
chemo'. He wanted to know what the percentage was for a total and
complete response from my chemo cocktail. The answer was surprising to
me, it has a 65% success rate. That means I had a 2/3rds chance of a
complete response. I feel extremely blessed to have been on the winning
side of this percentage! *We talked about radiation. By my next
herceptin treatment we anticipate that I will have started radiation.
Before radiation begins I need to have an appointment with the
radiologist and have my mapping tattoo's placed and then chemo can begin
in about a week from mapping completion. *I will see a Rick at my
next appointment to go over any problems I may be experiencing from
radiation or chemo. At the next appointment we'll discuss at which
appointments I will see a doctor and which ones I can just have my chemo
treatment with no doc visit. *During chemo today my brother and I played UNO and I discovered that's a game I'm good at!!
I
have an appointment this coming Monday to have my expanders filled
again. Not sure how many times it will take before I'm filled up.
Appointments for having my expanders filled can only happen once a week,
and at some point they'll add more than just a few TBSP.
I met
with a therapist last week to discuss lymphadema. I had my arm measure
for a compression sleeve. I have the address to several stores in the
valley that do fittings and make these sleeves, I just need to get in
and have one done. I was also scheduled to start physical therapy in
just over a week. This therapy will help me get my range of motion back.
I'm scheduled to have physical therapy up at the Huntsman center, but
I'm going to call my insurance and see if there is a location closer to
home so I won't have to drive as far. Closer to home sounds much nicer,
doesn't it?
Let me know if there are questions you have about my treatment that I'm not answering.
Thank
for for being my support system, my angels here on earth! I am blessed
through your prayers and your kindness! Thank you for loving not only me
but my whole family! My kids are blessed by your love. My husband finds
much relief when he finds so many helping with the daily upkeep of our
family! You are ALL so amazing! And I love you all!
