FROM EARLY DIAGNOSED TO METASTIC BREAST CANCER
While getting dressed one morning back in September of 2008, I found a lump on my left breast. Having no family history of breast cancer, or any other type of cancer, in my family, I didn't immediately panic. At the time, I did not have health insurance, so I went online to see if there were any free services available in my area. I found an organization called "Every Woman Counts" that helped women in my situation find the health care they need. Unfortunately, this organization is no longer in existence, but they were able to help me back in 2008 to find a doctor and get a mammogram.
The appointment was set up for the same afternoon. After examining my breast, the doctor suggested that I get a mammogram and sent me to the diagnostic imaging center straight from her office. After waiting 2 days for the results, they informed me that they were inconclusive and that I would need an ultrasound. Ultrasound was inconclusive so they ordered a CT scan. Again, the results of the CT scan were inconclusive so the next step was a needle biopsy.
This procedure was not as bad as I had heard. The hardest part of the biopsy was lying on the table for so long. The table was cold and hard with a circular cutout for your breast to go through. You had to lay there perfectly still during the whole process. There was the initial stick of the needle which was a little shocking, but nothing that I couldn't handle. The nurses couldn't have been nicer or more supportive through the entire procedure and honestly, without their help, I dont think I could've gotten off that table. They told me that only about 30% of these biopsies end up being cancer so I shouldn't worry. Then came the phone call.My phone rang and I could see from the caller ID that it was my doctor's office. Part of me didn't want to answer the phone. After saying "hello", the next words I heard were, "Oh, Salli, I'm so sorry". The rest of the conversation to this day is still a blur. She was telling me that I had breast cancer. Only someone who has heard these dreaded words can understand the numbness that overcomes your body, the light headedness, the tightness in your throat and the inability to catch your breath. I stared out the window for the longest time unable to process the information that I just heard. I shed no tears, didn't scream, I just stood there looking out the window frozen in time.
For the longest time, I couldn't even say the words "breast cancer". Seems silly, but I thought as long as I didn't actually say the words, then maybe I didn't really have it. I told no one about my diagnosis except my husband and he was sworn to secrecy. So for the next 6 months or so I remained the ostrich with its head in the sand. It wasn't out of bravery that I kept this to myself. It was more out of fear of seeing the reactions of others. There's no good way to react to this kind of news. Crying would've made me feel I was going to die and no reaction would've made me feel that no one cared. I wasn't ready to face either one of these emotions.
My doctor couldn't have been better. She made all the referral appointments for me and just told me where and when to go. The first stop - the surgeon.
My surgeon was a very likeable person with a good bedside manner. He explained to me that "it" had been caught early and that I was a candidate for a lumpectomy with radiation and not a full mastectomy. After doing a little research on my own, I decided to go for a complete mastectomy as I did not want radiation. The surgery was set for the middle of November which gave me some time to come to terms with what was about to happen.
They were doing the mastectomy and the reconstructive surgery at the same time. They warned me that I would have psychological effects after my surgery, but I never did. I was 56 years old and have 2 wonderful children and a very supportive husband. I just wanted the cancer gone and out of my body.
The week before the surgery, I gave myself the full treatment. I dyed my hair and gave myself a manicure. I even wore makeup for the first time in about 10 years. I'm not sure why, but this made me feel better as I entered the surgery entrance.
Now I know why they tell you to be there an hour early - it's to fill out the foot tall pile of paperwork before surgery. As I was sitting there going through this paperwork one page at a time, I kept looking around the room wondering what everyone else was there for. Was their surgery as major as mine? Was there anyone else there having their breast removed? Well I'm not sure if it was the unconfrontable amount of forms, the music in the room that I guess was supposed to calm you, or the nurses shuffling around like they didn't have a care in the world, but I completely lost it. I burst into tears, then broke into uncontrollable laughter. I was sitting there like an undiagnosed schizophrenic. My husband had to fill out the paperwork as I sat there trying to control myself with my head buried in a magazine.
Finally, I got called into the surgery area where they had even more questions. At this point, I stopped crying and laughing and started shaking. I wanted this experience to be over and asked if they could just knock me out now. The nurse came into the room, but instead of giving me something for my anxiety, she handed me a black marker pen. Not sure if this was supposed to make me laugh or make me more nervous, but her instructions were for me to mark the breast that was not being removed with the words "NOT THIS ONE".
My surgeon came into the room and his reassuring smile and manner made me feel 100% better. He told me that he hadn't partied last night, he got enough sleep and he was ready whenever I was. The anesthesiologist came in, introduced himself and reassured me that anesthesia was safe and that I would be monitored the entire time to make sure I was doing alright. I had mentioned to the nurse earlier that I was afraid of not coming out of the anesthesia. Apparently, she passed this information on to him. All at once I was surrounded by nurses who were putting socks on my feet, starting an IV and then wheeling me out of the room, into the hallway and through the surgery doors. The last thing I remember was my surgeon smiling at me and saying "Sweet Dreams".
When I woke up in recovery, they told me that the surgery went off without a hitch. The surgeon removed 23 lymphnodes and they would need to be tested to determine if the cancer had spread. I would get the results in 3 days. Once again, the anticipation of good or bad news. When was this going to end? Luckily for me, I got the results back in less than 3 days. The news was good. There was no lymphnode activity so there would be no need for chemo after surgery. Yahoo - something was going my way.
Recovery was fast and I was well on my way to putting this disease behind me. I was cancer free. Seven days after surgery, I was on a plane to Maui where my first grandchild was about to be born. I had promised my daughter that I would be out there the first week in December so that I would be there for the birth. She had no idea that I was going through any of this. It didn't feel right telling her about my ordeal with her being pregnant and due to deliver any day now.
When I returned, I was referred to an Oncologist who suggested that I go on a hormonal therapy drug which would decrease my chances of recurrence. There were two available. One had side effects of an increased potential for blood clots and the other I wasn't a candidate for since I had osteoporosis. I have a personal and family history of blood clots already so I didn't think the first one was a safe drug for me to be taking. I decided not to take either drug. The Oncologist said that even without any type of hormonal therapy, I only had a 8% chance of recurrence. I could live with that.
Two years later almost to the day (September, 2010), I woke up with excruciating back pain. After three days on cold and hot compresses with no relief, I made an appointment with a chiropractor. Twelve chiropractic visits later, still no relief. Massage and acupuncture had no benefit either. I guess it was time to go back to the doctor.
I have to admit, this test freaked me out a bit. They inject a radioactive sugar based mixture into your veins and let it you marinate in it for an hour prior to the test. Then you lay on a table with your arms over your head while they slowly slide you through a small narrow tube. Yes, I'm claustrophobic so I had a hard time with this part. This test took a total of 2 hours and after it was over, like everything else I had been through, it wasn't really as bad as I thought it would be. I was informed when I left, that my doctor would have the results the next day.
Waiting for these phone calls that will decide your future is excruciating. There's a part of you that doesn't want to know, but you know that you need to know. Right on schedule, the phone call came the next afternoon and my worst fears were confirmed. These results showed cancer activity in the liver and the spine along the T11 and T12. My breast cancer had come back with a vengeance.
I was sent back to the Oncologist who still wasn't convinced. I had only a 8% chance of recurrence. He ordered a liver biopsy that confirmed that the breast cancer had metastisized. I never thought I would be going through this AGAIN!!! Was I going to die?? Did I not act fast enough? Should I have done something different in those 2 years? Should I have taken the medication? No matter what the answers were to those questions - it was moot. The breast cancer was back.
It's now October, 2011, a year since that second diagnosis and I am alive and well. It's been a long and hard journey through self pity, denial, anger, and finally acceptance. I've become an avid online researcher these days. My plan of attack against this disease has taken me to many treatments both conventional and alternative. I just figured that it was best to throw everything at this disease, making sure that one treatment did not interfere with another. I studied my type of breast cancer (HER 2 +) and decided on alternative treatments accordingly. The amount of information out there in the alternative world is overwhelming. You have to go into this with your eyes wide open and remember that if it sounds too good to be true - it probably is. Remember that swimming with dolphins will not cure your cancer. Neither will chanting or envisioning your cancer getting smaller and smaller. You have to take action and the first action to take should be to do an inventory on your diet and your lifestyle.
Another PET scan done 3 weeks ago, indicated no active cancer in my liver or my spine. They don't say remission or cured when you have metastisized cancer, they call it NED (No Evidence of Disease). Whatever they call it these days.....I'll take it. I've been on Anastrozole with Zometa infusions. The Anastrozole affects your bones and I already have osteoporosis, so the Zometa infusions were a must for me. I have also changed my lifestyle habits and eating habits. For me, I decided to go the natural way with adjustments to my diet that made sense to me. HER 2 + breast cancer simply stated occurs when there is an overabundance of estrogen in your body post menopausal. I now eat foods that do not encourage the production of estrogen, eat mostly organic and take probiotics to help digest and remove estrogen from the body before it can be reabsorbed.
In the summer months, I lay out in the sun for 15 minutes a day to get my Vitamin D3. Research shows that this is the best way to get Vitamin D3 into your system. Just don't overdo it. The case for tanning beds is still up in the air. I'm not convinced of their safety although thousands of people swear by them. Once you have a cancer diagnosis, it's hard to use something that MAY cause skin cancer. You almost feel like you're predisposed to the disease once you already have it in one form or another.
In the winter months, I supplement with Vitamin D3.
Exercising is challenging for me due to chronic back pain caused by the tumors in my spine. They have left my spine permanently damaged so I have to be careful and choose exercises that don't put excess strain on my spine.
I started this blog to help people deal with their cancer diagnosis and know that there are people out there going through exactly what you're going through. You need to fight for your life. Don't just take one person's word for anything. Do your research and find the answers that you're looking for. Don't be afraid to ask the tough questions. It's your life you're trying to save. If you don't get a satisfactory answer, then look somewhere else. If you're not comfortable with your doctor, then find another one. Read everything you can on your particular cancer; throw out what doesn't make sense to you and do what feels right. Unfortunately, there are a lot of scam artists out there both in person and online, that take advantage of our fears and our desperation to do anything to cure ourselves of this disease. Just take a step back and research before buying anything or doing anything that either does not feel right to you or just seems to good to be true.
I am a very cautious person by nature and am not easily swayed by gimmicks. I would never give up conventional medicine in favor of alternative treatments 100%. For me, its just too risky. I think they can be done in combination. I'll never understand why these two practices can't work together to alleviate some of our suffering. Some say there's not enough profit in alternative treatment for conventional medicine to do the studies. There may be some truth to that - I really don't know. That's why we have to take the time to educate ourselves and not follow any one method blindly. Take charge of your own life and live each day to the fullest.
Where have I been since
April?
09/15/2012
09/15/2012
I have to first apologize for not updating more often over
the past 5 months. Lots going on with regards to disease progression, treatment
options, side effects, etc. I guess you could say that I got the wind blown out
of my sails.
The first photo was taken on our last morning in Maui on our way to the airport. My husband, son and I
enjoying a wonderful breakfast on Longhi’s on Front Street
The second photo is of Frankie, Stefanie, Zeke and Chuck
sitting at the bar at Longhi’s Restaurant. I don’t think we were ever able to
get a photo of everyone in it at the same time.
To say we had a wonderful time is an understatement. I mean
who couldn’t be happy in Paradise ? I was
feeling great with the exception of the chronic back pain, but pain meds did
the trick for the most part.
We went in January, 2012 after the holidays were over to
save money on flights. If we flew out over the holidays, flights were
$1,000/each. Waiting until the middle of January, we saved hundreds of dollars
per ticket. I think they ended up being $325/each. A substantial difference
making the trip actually do-able.
Landing in Oakland Sacramento
There’s That Familiar
Sound of the Other Shoe Dropping Again, Ugh!!
Everything was going great until about April, 2012. Again,
I had lower back pain that I couldn’t get under control. I went straight to the
computer and started googling support groups online to see what was going on
out there in the HER2Positive Metastic Breast Cancer world. I found that
Herceptin was the new breakthrough IV drug that specifically targeted us HER2Positive
Breast Cancer girls.
I am so glad that we took this trip. Little did I know that
just a few short months after all of this island fun, I would be hit with yet
another progression of breast cancer. Yes, the Anastrazole had stopped working.
This was not unexpected.
Right up front, my Oncologist told me that the effects of the
Anastrazole were not permanent. Eventually they would stop working and the
disease would progress and once again, this progression started off with severe
back pain.
I didn’t mess around this time. I went straight to the
doctor who ordered an MRI. The MRI showed that I had a compression fracture,
but did not show any progression of the disease. He ordered a PET scan to make
sure everything else was all right. The PET scan revealed progression in the
liver, bone and a sprinkling in the lungs. Still not sure what a sprinkling is.
The pain was so severe in my spine that the Onc ordered a round of radiation
therapy to shrink the tumor and hopefully lessen the pain. After radiation was
complete, I would be started on Herceptin with chemotherapy.
Well I gotta tell you, radiation was killer. If I had known
what I would go through, I’m not sure if I would agree to this treatment. After
the fact, I’m not sure if it really did much to manage the pain. Under the
radiation therapy I lost 17 lbs. and was literally in bed too weak to even get
to the bedroom door for the better part of 3 months. The only time I got out
was to be taken to my radiation appointments. Each one made me feel worse to
the point where I just didn’t show up for my last session. I was too weak to
go. I had no appetite and was nauseous almost 90% of the time. Anti nausea
medication did little to nothing to handle this symptom and I was just getting
thinner and weaker with each day.
I still have not gained back the weight that I lost during
this time, but I have gained my strength back to a degree. My appetite also has
not returned and my nausea has lessened but is still there.
My MUGA Scan
The use of Herceptin requires that you have this thing
called a MUGA scan every so often to make sure that the drug is not damaging
your heart. This is the one major side effect of Herceptin. Other than that, it
is the newest and hottest thing out there for treating HER2+ Breast Cancer. They start off with a MUGA scan before
starting Herceptin to get a baseline for all other MUGA scans down the line.
After all of the infusions over the years, my veins have
pretty much gone on permanent vacation. Add to that the fact that I can only have
IVs on my right arm since my mastectomy was on the left. This is what prompted
me to finally get a port. The nurses told me not to come back unless I had a
port. They were kidding, of course….. I think….. Anyway, I’m at the hospital waiting to be called
in for my MUGA scan. The scan requires that they take 2 ccs of blood, marinate
it in some radioactive substance, then put it back in your veins. Then they do
the scan of typically 3 films. Well this time I wasn’t worried because I had my
port so there would be no fishing around for a usable vein… WRONG…. They said
that they could not use the port as it was so close to the heart. It would
interfere with the scans. Panic and fear took over me. I told them just how hard it was to find a
vein and that I was really not a good patient when it came to multiple vein
sticks and that I was on the verge of passing out just thinking about it.
Little did I know that this hospital actually has an elite team of IV starters.
They are the ones who can find veins when no one else can, usually in one shot.
Wow – what a relief. But wait a minute. Who is this enormous man walking
towards me with a pissed off look on his face. Oh no – a member of the elite
squad. I’m in trouble.
I’m a slight 5’1” weighing 105lbs. Here’s this guy walking
down the corridor that has to be 6’3”, built like Arnold Schwarzenegger. He
spoke in an accent that I did not recognize, but he did not sound happy to be
here. This guy had no bedside manner whatsoever. I could not believe that this
guy was about to attempt to find a vein in my already bruised and delicate arm.
It turns out that what this guy lacked in charm, he made up for in technique.
He had a gentle touch and actually got the vein the first time. I felt like
doing cartwheels down the hallway. What a relief.
First Day of
Chemotherapy
Reluctantly I started chemotherapy with Herceptin. I felt
so bad, the last thing I needed was to start something that was going to make
me feel worse, but I really had no choice. Treatment couldn’t wait until I felt
better.
I was told that I may have a reaction to the chemotherapy
at first, but the nurses would be right there if there is a problem. I asked
what kind of reaction to expect and the doc explained it as being sort of like
an anaphylactic reaction. My blood pressure would drop and I may lose
conscientiousness. Now, I’m not sure if you realize how much of a wuss I am
with all of this medical stuff, but this really scared me. I had visions of me
dying on the infusion room floor not being able to be revived.
On my first day of chemo, my husband came with me just in
case. Not sure what he would’ve done if something happened, but it was nice to
have someone there to hold your hand. This is when I found out by my favorite
nurse – the one who was going to stay with me through my entire chemo session -
that they give you pre-medications to
avoid a severe reaction. I wish the doc had told me this beforehand. It would
have saved me some grief and anxiety. Needless to say – all went well. No
passing out, no falling on the ground, no hallucinations, no anaphylactic
reaction – nothing.
I have to admit that at least my experience is that chemo
really isn’t that bad. The exception is the hair falling out, the nausea, and
fatigue, but that can be controlled. I was surprised.
The only bad side effect that I had was a lowering of my
white blood cell count which required three shots over three days after each
chemo session. This is common with people receiving chemotherapy. In most
cases, chemo lowers your ability to fight infection and a series of injections
with Neulasta become necessary. Some patients receive 3 shots and some 5. Some
receive them all in one dose and some are spread out over a few days. The one
thing that they all have in common is that no matter how they’re scheduled, the
side effects are intense bone pain. This, like anything else doesn’t happen to
everyone. Some people just suffer from flu like symptoms I’m told, but I get
the full blown pain for 3 to 4 days. This pain rivals child birth in its intensity.
I have found that Vicodin and an ice pack lessen the intensity and duration of
these pain attacks.
October 18, 2012
Stupid things people
have said
Okay, this comment came from a receptionist in a doctor’s
office. Not my Oncologist’s office, but one of the many specialists I have had
to see since my diagnosis. She knows my
medical history with breast cancer; and she can see that I’m getting
chemotherapy since I have no hair on my head, but still she can’t put 2 and 2
together and realize that what she is saying (twice now) is just so wrong on so
many levels.
Here goes. I was
talking about the side effects of not only my chemo, but also the white blood
cell booster injections that I receive three times a week. She looks me square
in the eye and says, “I know, cancer doesn’t actually kill anyone. It’s the
treatment that kills.”
SERIOUSLY????????? I hate to
admit it, but I was speechless which is not common for me.
My favorite one liner came from a friend of a friend when
we first met: “Hi Salli, ______
(friend’s name withheld to avoid embarrassment) told me that you have metastic
breast cancer. I have something in my medicine cabinet right now that cures
that.” Again, I had another speechless
moment. I’ve been having a lot of those lately.
Another one is: “You
know the reason it metastasized don’t you? It’s because you let them cut into
you.” Oi Vay!!!!! So I guess I should’ve
just let the cancer grow rampantly throughout my body.
Then, of course, the people who can’t wait to share how
many people they’ve known who have died from what you have and how they
suffered along the way. Now that’s cheery and uplifting isn’t it??? Where’s my
gun????
I know that people aren’t intentionally trying to fool you
or hurt you or depress you, but please – think before you speak, unless of
course you like the taste of your feet.
I miss my mom
11/2/2012
11/2/2012
Have you ever noticed that no matter how old you are, when
you’re throwing up or feverish or otherwise very sick, that you find yourself
wanting your mom, or at least thinking about her? I have and I’m 60 years old.
You miss that gentle cool hand feeling your forehead or holding your hair back
as you vomit into the toilet and somehow or another, a visit to your room from
mom always made you feel just slightly better. She put Vicks Vaporub on your chest, crushed
up the baby aspirin into orange juice, kept the cold rags cold on your forehead
and would stay next to you for hours just stroking your hair. If you were lucky enough to have your
grandmother live with you as I was, you got a double dose of comfort and care. Where
have those days gone?
My mom is still living, but she suffers from severe
Alzheimer’s.
I was fortunate enough to be able to take care of her for
almost 10 years. She moved to California from New Jersey Stanford Medical Center
My mom moved out here to be closer to my brother. None of
us knew exactly how much longer he had and she wanted to be with him in his
final days. He passed away less than a year later peacefully in his sleep.
Mom started going downhill after that. What started out as
mild dementia quickly grew into mild to moderate Alzheimer’s, then severe
Alzheimer’s. After my breast cancer
diagnosis in 2008, it became increasingly difficult to care for her and I still
had a teenage son at home. But we all managed. Juggling the ups and downs and
rolling with the punches.
I remember the day when I lost my mom. The mail came and in
it was the letter from the hospital confirming, in writing, that my breast
cancer had spread to my liver and spine. I was in excruciating pain at this
time and walking with a walker. Suddenly out of nowhere my mom started
screaming at me that I was hiding her medical condition from her. She had read
my letter and misunderstood that the diagnosis was mine and not hers. I told
her that the letter was for me and that I was the one with breast cancer not
her and that she was perfectly fine and healthy as a horse. She looked at me
and said, “oh good, then you can drive me to the store”. Wow…. Where was the cool hand on my forehead
giving me comfort? Where was the crushed baby aspirin? Where was the reassuring
hug that made me feel that everything will be alright? My mom was gone – not in body, but in mind. I
reacted to this the same as I did after my initial breast cancer diagnosis –
staring out the window frozen in time.
Over the next year, it became more and more difficult to
care for her. She would wander in the middle of the night, set things on fire, and
attempt to eat things that weren’t food. My husband started working from home
to help with her care, but this was taking a toll on all of us including mom.
We were all just so exhausted and the quality of care we were giving her was
going downhill and to top it all off, my cancer was progressing. It was time to
look into nursing homes that could provide the quality 24/7 care that she
needed.
We don’t get to see her very much these days as she’s in a
care facility in Maui close to my daughter. My
daughter took over the search for a care facility and got her into a wonderful
place with a distant ocean view. She
said, “you’ve been doing this for 10 years, now it’s my turn”. Isn’t she awesome????
As my health gets worse with the side effects of
chemotherapy and weakness and nausea are dominating my life, I find myself, on
nights when I can’t sleep, crying for my mom and needing to feel her comforting
hands and her reassuring hugs.
I miss you mom.
Doctors in the ER
11/13/2012
Doctors in the ER
11/13/2012
Since receiving chemotherapy, my white blood cell count has gone down to sometimes dangerous levels. My Oncologist’s orders were to take myself directly to the Emergency Room if my temperature went above 101 degrees as there may be an infection brewing that my body will be unable to deal with.
This will be my third ER visit in the past 8 or so months. Not all for the same reasons though. One was for pain management; one was for uncontrolled nausea and vomiting and now, this time, for a fever. Unfortunately, it happened right in the middle of my daughter and grandson visiting from Maui . They were here to help out with housecleaning, laundry and lawn cleaning which have all fallen by the wayside. I actually requested that I take a week off of chemotherapy so that I can feel better while they’re here for their visit and here I am on my way to the ER.
On all three trips, as soon as I said I had breast cancer with mets to the liver, bone and lung, their treatment became focused around the breast cancer and not the symptoms that I was presenting with. This was especially true this time around.
In the ER, they took a chest x-ray, listened to my chest and put this all together with the fever and said that it looked like I had pneumonia or a severe case of bronchitis. They started me on broad spectrum antibiotics and admitted me into isolation due to my white blood cell count being lower than 2000. Within a few hours of being admitted, I developed shortness of breath which made it incredibly hard to breathe. My oxygen level remained within normal limits, but my ability to breathe was difficult. The only thing that would remedy this would be pain meds. The pain meds had a relaxing effect and my breathing became less labored.
The ER doctor came to see me in the room and said that this shortness of breath was due to the large amount of cancer in my lungs. He said that I would always have shortness of breath and that I needed to be on oxygen and should start the process of getting in home oxygen as I will most likely need oxygen for the rest of my life. In other words, this symptom was not going away and I should deal with it sooner rather than later. He didn’t seem to think that the pneumonia or bronchitis had anything to do with my ability to breathe normally. Really???? My husband and I both requested a bronchodilator which the doctor refused. He was absolutely stuck on the fact that the cancer in my lungs was causing the shortness of breath and that an inhaler would be of no use.
I couldn’t believe my ears. How could this have come on so suddenly? The answer is that it could not. This doctor was (excuse the expression) talking out of his ass and in doing so, scaring me half to death.
After regaining my senses, I asked him how this could’ve started overnight, but never got an answer. Even when I was being discharged, his instructions were to continue to fight for the in home oxygen. My insurance would not approve the in home oxygen at discharge. Apparently your oxygen level has to go down to a certain level before oxygen can be approved and mine, as I said, stayed pretty well within normal limits. So this meant that I was going home without oxygen.
I have to admit that this did scare me a little. There is no worse feeling in the world than not being able to breathe. I just made sure that I had enough pain medication to counteract this symptom as it did work in the hospital.
After about 2 days at home on Amoxicillin, my breathing became less and less labored. On the 4th day, my breathing returned to normal and has remained that way to present. The shortness of breath was absolutely due to the pneumonia or bronchitis that I had (which they never really decided which one it was) and as soon as it cleared up on antibiotics, those symptoms disappeared.
In the future if this should happen again, or if this has happened to you in the Emergency Room, inform the ER doctors that you have an Oncologist to diagnose your cancer and the progression of your cancer and that cancer or its progression cannot be diagnosed in the ER. Just stop them where they stand. Take control of not only your medical treatment, but also your emotional well being.
First
Day Back at Chemo
11/20/2012
I’ve been off of my chemotherapy treatment schedule for
about a month now since my daughter Stef and grandson Zeke came to visit. I
can’t believe that I don’t have any pictures to post, but there never seemed to
be enough time, or all of my scarves and hats were dirty, or Stef was on her
way to the grocery store to buy more healthy organic food for us. Already had
one week off as part of the chemotherapy protocol, but I asked my Oncologist
for another week so I could enjoy our visit without having to deal with any
chemotherapy side effects.
Zeke had a cough when he arrived here from a cold he caught
a few weeks ago at his daycare. He was deemed non-contagious and what he had
was just a residual cough and I’ll take any reason to not have to avoid my
grandson. They live so far away and I want to see him every minute that’s
available. However, I now know that we
immuno compromised people undergoing chemotherapy do not fall under the
category of “normal people” to whom this cold would not be contagious. Here I am, now hospitalized, with pneumonia
just 4 days into their visit. Man, this really sucks.
Now this brings me to my first chemotherapy session after
being off for a month. I was happy to see everyone. It’s like going to Cheers
where every body knows your name…
And they’re always glad you came…You want to be where you
can see troubles are all the same. You want to go where everybody knows your
name…” Didn’t mean to sing that much of the song (yes I was singing – weren’t
you?), but it does seem to fit.
My first day back and Helen, an Oncology angel nurse, told
me that there was a new policy that they’ve implemented. Due to patient
scheduling and some patients needing to get out earlier for work, other
appointments, etc., they’ve decided to manually push some of the premedications
through the veins instead of the IV drip method. This would only apply to the
premeds – not chemo drugs and only a few of them. This could feasibly shave
about 45 minutes off some patients’ time and speed up their progress. In order
to increase efficiency, all premed patients are manually IV pushed. Helen
assured me – NO BIG DEAL – NO REACTIONS – NO PROBLEMS WITH ANY PATIENTS BEING
PUSHED. So I said – PUSH AWAY – even though I was not one of those patients who
needed or sometimes wanted to leave early. I also didn’t want to be sand in the
ointment. Well about 30 seconds into the PUSH, the room was spinning out of control;
I was involuntarily rocking back and forth and couldn’t stop. The room was fading
into dark grey, and then would pop back to bright white with Helen calling my
name. I finally got the room to stop when phase II of the NO BIG DEAL PUSH
landed – VOMITING. Fortunately, Laurie, a nurse across the room, saw my face
change colors from white to gray and ran for a big plastic bag just in time.
Thank you Laurie... When vomiting ended, diarrhea set in. Rushing through the
IV poles and chemo patients and around a couple of turns to get to that
beautiful sign that says “Ladies” seem to take forever.
Okay, now I’m feeling much better and almost back to
normal. I walked myself back to my very comfortable lounge chair/recliner with
Helen’s help and realized that most of the people in the room are looking at
me. I guess I did make quite a scene, but at least they were looking at me with
concern, maybe some of the newbies even wondering if that was going to be them
some day.
Helen came back with some tissues and wet rags accompanied
by Nathalia and hooked me up to the regular IV drip for premeds. Helen put NO
PUSH in big letters in front of my file to make sure no one makes that mistake
again. There has never been an explanation for my reaction to THE PUSH. For the
medical staff in the office, it remains a mystery. I am the NO PUSH girl – or
pay the consequences.
11/25/2012
Second Chemo Session
After Return From Hospital
I Left My Mind in
Chemotherapy!!!
Jokingly, I heard someone say “No Push has entered the
building”. Yes, I said, I have arrived and am ready for a completely non
eventful session where I just enjoy your company and eat snacks for the next
few hours. I took my normal seat in the room and settled in.
So Helen comes over and accesses my port to get all the
drugs onboard – so far so good – then she hooks me up to my first premed by IV
drip. This premed is for anti nausea and vomiting and I take it in pill form at
home so no big deal. I mention this here because they changed this premed for
today. They usually use another one whose name I can’t remember. Okay, about 5
or 8 minutes into the IV drip, I get this light headed, queasy nauseous
feeling. Once again, Laurie notices my face changing colors and runs over with
a plastic bag. Before I could get the words “I probably won’t need this, but
good to have just in case”, the projectile vomiting starts. Thank God for that
bag. All nurses running for me now. Helen is on her way into the doctor’s
office to get some advice about what’s happening to me and what to do about it.
I just kept vomiting for what seemed the longest, most uncomfortable time. Then
it stopped – abruptly and I felt much better again. I was good to go on and
continue. I felt great. Unfortunately, Helen had some news from the doctor who
said to take my vitals and put me on an IV drip of Ativan to help with the
nausea.
During my most recent hospital stay, I had a run in with
Ativan. The hospital gave it to me thinking it would solve my shortness of
breath. At first they gave me a ½ mg dose which I handled well. It helped my
breathing and I was tolerating it well. Don’t you think they should’ve stopped
there? No!! Next night they doubled the dose and my vivid nightmares and
hallucinations began. What a night. Reminiscent of the 60’s seeing friends on
bad trips. Suddenly this angel of mercy came in and rubbed my back and
shoulders gently until I fell asleep. Honestly, I wouldn’t have made it without
her.
Well here I am about to be put on another Ativan trip. I
told Helen my ER story, but she said this was a very very small dose. The small
dose was fine in the hospital so I decided to let them give it to me. In about
15 minutes, everything became a surreal out of body experience. Some of the
events of the rest of that day had to be told to me by my husband because
apparently I was completely unconscious. I hugged people, whispered in ears things
I am not aware of. Now remember this is all while hooked up to chemo. I ate
multiple bags of cookies, chips, and juices. I asked one of the nurses to make
me Ramen Noodles that I spotted on someone’s desk. She did. I was muttering,
humming and singing the whole time. When I spoke, no one could understand me. I
was slurring big time. When it came time to go home, I fell flat on my butt.
Couldn’t stand or walk so I was put back on the lounge chair while my husband
went for a wheel chair. We started driving down the road towards home. All the way home I was telling my husband
about the wonderful talks I just had with my mom, my grandmother and my cousin
Michelle. All of these people except my mom are deceased and have been for
decades. My mom is in a nursing home in Maui
with Alzheimers.
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