Gated Heart Pool Scan and Lung Function Test. This was to show the
Dr’s where Chris’s heart and lungs were prior to starting chemo.. so they could
keep an eye on any damage that may occur and change treatment as/if
required. So there we all were back at
Westmead, Chris, Susie & myself & we head off to the Nuculear medicine
area where they conduct the gated heart pool scan Chris recognized one of the
workers from the PET scan area, he must work heart scans too. He is a lovely
guy & is happy to explain what the test is about & why they do it.
Susie goes in with Chris & records a video of the procedure. See attached
video.
We
then went to the lung function test area, where we were to check the capacity
& general lung function. The lady ran a number of tests while Chris sat in
a peculiar machine. After about an hour of testing, she said we could all go in
& get the results. She explained the results, reporting that they were
good. Whoo hoo we were all thrilled to hear this.
As
the chemo drugs are so strong, they need to check all your vitals prior to
treatment & also along the way.
Chemo does immediately cause fear in everyone. We know it's rough on the
body & yes, it kills cancer but it also runs down your natural immune
system. Although it does effect everyone differently, & we won't know until
Chris starts, how it will effect her. All that we hope for is it doesn't effect
her too negatively.
Below is a picture of the heart testing machine & lung testing box type thing that you have to sit in when they conduct the lung test. And some video which explains the gated heart pool test.
Bone marrow biopsy. We made our way back to Westmead Hospital. Chris was extremely anxious about the procedure, as she had previously watched it on YouTube (I wouldn't dare to)..We got there at 8.30am & we were led to a standard hospital room, where there were three empty beds, seperated by a curtain. I looked around & found a stereo, oh yay music, yup music makes eveything better. Ah no reception, bah no radio then, but I found a few CDs, scattered around & spotted WHAM. Well what can I say, we love a bit of Wham. Fab, it's a best of album, so I cranked it up & occasionally a nurse walked past & smiled. I knew Chris was super anxious, so well what else would you do but bust out a bit of Wham drag. (see video attached) I grabbed a neatly wrapped syringe & used it as a microphone. I started miming & dancing to Wham's 'I'm your man'...we have a good laugh & for a millisecond we forget why we were there. Soon after, Susie arrived & we all got into the songs & tried to keep things light.
A nurse came around & gave Chris two lorazipams (not sure of spelling) prior to the biopsy to settle her nerves. In the meantime, an elder lady had come in & sat on the bed next to Chris. We smiled as she was lovely & reminded Chris of her favourite aunty that had past (this particular lady happened to be having the same procedure).
Once the Dr came in, she decided to let Chris's drugs kick in & said that they would do the older lady first. They pulled the curtain that divides the beds & started the same procedure on this lady. Of course we could hear everything, then all of a sudden, we heard the worst type of moaning, the type of I'm in deep pain that comes from somewhere deep within. Of course we were freaking the fuck out, Chris was almost jumping out of her skin. She got up & walked out of the room which was a brilliant idea. My god, how could they make people listen to someone else going through the same procedure that you were about to endure?. We walked around restlessly, waiting for the lovely old lady's procedure to finish. Once they finish, they came over to Chris who was petrified. Chris asked why they made people sit & listen..why not leave us in another room. They didn't know what to say, they said that the lady's reaction was unusual & that it wasn't normal...Yeah great, that was comforting. Anyway, they decided that they now wanted to complete another lady's bone marrow biopsy prior to Chris's, so the lorazipams could 100% do their job. Yikes for real, we had to listen to another one. Fuck it, we all left again & went for a walk as we were all terrified. Once we returned, we heard nothing, no moaning & at the end of the procedure, the lady thanked the Drs. This was a good sign, so we felt slightly better about things.
The Drs made their way over to Chris. The Lorazipam had kicked in & she was feeling dozy but still very anxious about the procedure. They then gave Chris a whistle (pain killer) to suck on during the procedure. They asked her to lay on her side & prepped her pelvic bone area, toward her lower back. They began by giving her a local anaesthetic to the area where they would be working. We got the whistle going & she started using it. Chris said that it was like one of those thick art line markers (we could also smell it & it was very potent smelling). I was stroking Chris's hair & holding the whistle in her mouth, asking her to breathe in & out. Susie & I were like her midwives, desperate to ensure that she wasn't going to feel this, so every time we saw the Drs about to do something, we just told Chris to suck on that whistle. Although I couldn't watch what they were doing, my main focus was just on Chris, watching her face to ensure she wasn't in pain. At one stage, I glanced back at the Dr to see what was happening but I just saw blood on the instruments, which was enough for me. Chris was in her happy place & wasn't feeling a thing. Susie & I were so glad of that but towards the end, the Dr was struggling to chip off a bit of Chris's bone. This was part of the procedure, as they needed a sample of the bone.
So basically what this procedure entails is they use a needle to get down to the bone & then cork screw into the bone & suck out some of the bone marrow with a syringe. Anyway, finally the Dr says she is finished & slowly Chris comes back around, she was groggy but thankfully, she hadn't felt it. Oooh weee, I thought to myself, thank goodness for that whistle! We sat for a while until Chris felt well enough to walk. She still didn't feel anything in the area as they had pumped alot of aneasthetic into the area. We slowly walked around to the cafe & got a coffee & some jelly.. ah red jelly made everything seem better. We were all grateful that the procedure was behind us & we made our way over to Chris's mums for a lovely brunch. For the next couple of days, Chris felt like she had been kicked in the lower back by a horse.
Little snippet of our time at the hospital prior to the biopsy, gotta love a bit of fooling around
We both went to work, though every fibre of me just wanted to be
with Chris. I can't explain, just how much, every thought in our mind was on
our next meeting with Dr Blood... we wanted answers. It's the waiting that just
eats you up, anyone that has been sucked
into the medical system knows exactly how this feels. Time means
nothing, it doesn't matter how anxious you are, you just have to wait!!!
Chris
spoke to the Clinical Trial Co-ordinator.. the decision to enter the clinical
trial was still not made, although we were definitely leaning towards the
trial. There seemed to be a lot more monitoring of the patient & they
conduct a pet scan, after two chemo sessions, which they normally wouldn't do.
I could go into all the differences, but the main thing to us was, if all was
going well, you were randomly chosen & may end up with one of the chemo
drugs being removed (the one that is toxic on the lungs).
Chris
also left several messages for Dr Blood, as she eagerly wanted to discuss the
results of the PET scan. We were all on eggshells, waiting to hear back from
him. Finally he called, after several stalking calls to his receptionist. He
told Chris not to worry and that he would know more once he met with his
clinical team (next planned for the morning of the 3rd April, 2012). However,
he decided that Chris would need to have the bone marrow biopsy, yes, this was
the one thing Chris had dreaded... urgh ok, so the good news was that there was
not a lot of time to be anxious...It was booked in for tomorrow morning.
FYI~Below is a lovely little diagram of where the bone marrow biopsy takes place on the body, if you have a really strong stomach you can even YouTube the whole darn procedure.
Apt with the Surgical/Oncologist to check on the healing of
Chris's biopsy. Dr H looked at the wound & said it looked good & it
actually did, she did a great job. Fortunately, the only ouchy bit in that
visit, was the register ripping the bandage of her neck! Eeep
At
that appointment, the register stated that he had a copy of the PET scan
results. Chris requested a copy. Once we
got home, the first thing we did was jump on the computer to start trying to
decipher the pet scan results. From Chris’s interpretation, it looked like it
had spread. This included enlarged nodes under the diaphragm, spleen and bone
marrow. We both suddenly felt a lot more anxious & of course, wanted
answers, ASAP.
PET scan day.. so what is a pet scan?, this was where they
injected radioactive glucose into Chris's vein & then put her through one
of those mega million dollar machines, that whirled around her body, taking 3d
images of her insides. The radioactive glucose stuck to the active cancer cells
& therefore showed up on the Pet scan.
Prior
to them injecting the radioactive glucose, I was asked to leave, as I couldn't
be with her when they injected the solution.
After the scan, Chris came out & said that
it was uncomfortable, lying still in the machine. It would have been at least 45
minutes on the hard plastic bed that fits inside the machine. She told me they
taped her head down to the bed as she needed to be completely still. She also
had to hold her arms above her head the entire time.
She also told me that at one stage when she was placed into the dark room by herself that she looked at her hands & thought they were glowing aka radioactive style & then realized that there was a window behind her & there was some light was escaping through & lightning up her hands, ha we both had a good laugh! Ah I love her so much, she amazes me..she is just
taking all of this in her stride.
Yep, so this was "the day" that we had all been waiting
for. The day Dr Blood would give us answers. In the morning, Chris called the
lab to check if the biopsy results were in. The lab told Chris that the
‘preliminary report was in’. Chris questioned if she should wait or keep her
apt with the Dr that afternoon. Chris was toldl “I suggest you do”. OMG, we
both weren't expecting that they would actually have the results...Ok, breath,
we can handle this.
2.30pm,
Chris, Susie & myself were all in Dr Blood's office. He chatted a little at
the start & seemed to prolong telling us, until he finally confirmed that
Chris had Hodgkins Lymphoma, Stage 2B. We quietly sat & listened to him
talk about treatment, including chemotherapy & added that she should think
about undergoing a clinical trial that they were currently running. He advised
that Chris will have to have more tests, in order to confirm her staging & at that time, told us that
there was no way we could travel. Treatment must start ASAP & again we were
all knocked for a six, was this for real. It's funny how it takes time to
really sink in. We all walked out, holding ourselves together, pretty well
under the circumstances. Dr blood told us that this was the most treatable type of cancer & I guess,
that was what we tried to keep in mind.
So
what is Hodgkin Lymphoma?
Hodgkin lymphoma is a cancer of abnormal lymphocytes (a type of
white blood cell) that infiltrates and affects the lymph nodes.
Lymph tissues are
connected throughout the body, providing a route for cancerous lymphocytes to travel.
As a result, Hodgkin lymphoma often spreads from one lymph node
to another throughout the body.
What
differentiates Hodgkins lymphoma is the presence of Reed-Sternberg cells in the
cancerous tissue. The presence of these cells, detectable only through an open
biopsy, is the defining characteristic of Hodgkins disease, as opposed to
non-Hodgkins lymphoma.
I woke up at 5.00am & immediately thought
of Chris & how she was doing..I rushed back to see her, she was still
groggy from the endone (pain killer) & the Drs had just done their rounds.
The Drs decided that they wanted to keep her in as her blood pressure was still
low.
Magda
soon arrives & we spend the day trying to get her to eat. We sat quietly
whilst she drifted in & out of sleep. Night time rolled around & Chris
was still not herself. The low blood pressure persisted & she wasn't eating
much. It was a tough time...Not only was she trying to recovery from the surgery
but of course, weighing on all our minds, was the thought that she might have
cancer. We all tried our best to keep her comfortable & as happy as one can
be in hospital.
17th Match, 2012
So
Saturday rolled around & I was back at the hospital, along with Chris's
family. Chris was looking a bit better, which I was relieved to see. The nurses
said her blood pressure was low but Chris was eating better. Chris had decided
to stop taking the endone, as she felt it might have been making her feel
worse. It was great to see her fighting through everything that has been going
on. Chris truly has the most amazing spirit & on that day, it had kicked in,
full force. Chris wanted to try some walking, as she was over being in
hospital. The surgeon herself came around to see what was going on & why
her blood pressure was still so low. Dr H explained to us that sometimes people
were just slower to recover from surgery & that we shouldn't worry.
Early
afternoon, we walked down to the cafeteria, all together, ever so slowly. To
me, that walk was the best thing ever. Chris really just wanted out of the
hospital & as there was nothing that they could actually do to bring up her
blood pressure, she told them that she wanted to go home.
The
Dr in charge at the time didn't want Chris to leave but Chris had made up her
mind. So, begrudgingly, the Dr discharged her, with load of meds. He told us that she needed plenty of rest &
that we should just monitor her blood pressure...Any concerns, we were to bring
her right back.
Ah
I tell you, I couldn't have been happier to have her back home. Chris spent the
next few days resting & sleeping & I was just so over the moon to
listen to her relaxed, sleepy breaths, as she slumbered beside me on the couch.
The cartoon below is a bit of a inside joke regarding one of the Dr that saw Chris, he sounded just like Dracula.
We were at the hospital at 8.30am, ready for surgery at 9am. Chris
had been advised that she must fast prior to surgery (midnight the night
before), we both had a terrible sleep & woke up super early, ready to go in
& get this over with.
When
we arrived, we were taken into the day surgery, pre-op bedroom... stats were
taken & we waited...& waited... 9.00am, 11.00am, 1.00pm, 3.00pm, rolled
by, ever so slowly. Susie came to support Chris & so did Rob (Chris's
brother). Chris has a very tight knit family & their love & support is
amazing...
While
waiting, Chris was hungry & hankering for a coffee. She was getting
migraines from the lack of food & water. Yep, waiting around that long in a
hospital, felt like we were sucked into a black hole, as time became so
irrelevant.
Finally
at 4.00pm, they came to take Chris to theater, Chris was actually happy to see
the person that wheels you down.
Now,
I quickly drive back home & meet up with Chris’s family, so we can all go
back & see Chris, post surgery.
Chris
opened her eyes in recovery at 6.20pm. We were all at the hospital, eagerly waiting
for Chris to be wheeled out. We nearly jumped every patient that was wheeled
past the ward, where we found out she was going to be taken. Time, 7pm, finally
we see her, she still was majorly groggy but was able to see that we were all
there. We were all so relieved to see her & for me, to just see her face
was like the best thing ever.
About
an hour after Chris came out of surgery, her blood pressure suddenly dropped
dramatically. We were all asked to stand back, the curtains were drawn & 3
Doctors gathered around her.. It was really scary, as we didn't know what was
going on. Chris had a terrible experience when they were checking her blood
count (I think), via arteries in her wrist. This was like no usual blood test,
it's where they go directly into the arterial vein (very painful). We
could hear Chris in pain & it
was heartbreaking. Eventually they were able to stabilized her & by that
stage, it was around 10.30pm...13+ hours of hospital time, since she was first
admitted.
Chris's
procedure was supposed to be a day procedure but Chris stayed in hospital due
to low blood pressure. We left around 11.30pm. It was a huge day.
As
I was driving home, I was devastated.. what we thought was to be a simple
operation, had turned into something bigger. I got home, into an empty bed
& fell into a restless sleep.
Consult with the Surgical/Oncologist who was to perform the
excision biopsy. The meeting with Dr H was quite straight forward, providing us
with a brief about the procedure, which was to remove a lymph node from the
left side (quite prominent) as she wanted to get as much good tissue for the
lab to conduct their tests.
14th
March, 2012,
Pre-admission appointment..more tests and a meeting with the
anaesthetist. It was about a 3 hour process, hopping around from room to room,
which included an ECG, lung test, blood tests & a chat with the
anaesthetist. Chris was pretty anxious about the whole procedure, as she had
never had surgery before, so was understandably edgy.
Many days have passed since our first visit to Dr Blood & now Chris starts to develop fevers, she was shivering and her joints hurt.
Night sweats started as well...From that day forward, this was a daily
occurrence.
I was completely freaked out.. Why was she having those symptoms..
she doesn’t have Lymphoma, no she does not.!!!
Denial is a nice cosy place to hang
out but the symptoms were quietly freaking us both the f*#k out!
Spent the day trying to get the surgeon Chris wanted to perform
the biopsy.
Dr H seems like a switched
on kinda gal & we felt comfortable with her so we were quite happy that she
said she would fit Chris into her schedule for the 15th March, 2012 at 9am. Ok
so now we have a date & time we feel slightly better that we have a date again
for the surgery to be done. Ah the slow process that is the medical system.
Blood Tests + a Biopsy were scheduled at the Crown Princess Mary
Cancer Clinic. Bloods were taken but the Biopsy didn’t end up happening.
Massive disappointment all round...we just wanted to get the biopsy done so we
could once & for all be 100% certain about what we were dealing with.
It
felt like a massive time waste, being told that we would have to return, as
they weren’t aware that this would need to be a full surgical procedure, rather
than a biopsy done with a local anaesthetic.
We were advised that Chris had to
go under a general anaesthetic to have a lymph node removed. Earliest available
would be the 19th March, 2012. Time marches on..It feels like forever since we
had that first meeting with Dr Blood & we were still undergoing tests to
get the final answer.
CT Scan day, Chris was advised not to eat or drink anything for
eight hours before the CT scan. Chris was asked to drink a bottle of barium,
just prior to the scan & then an iodine injection was given (the iodine is
supposed to make you feel hot, but Chris said it wasn't too bad), while lying
on the machine. A bunch of images were taken & then Chris was told to come
back in 3 hours to collect the results.
We went & had lunch & tried not
to think about things. Lunch was great, enjoyed with Susie (Chris’s sister)
& Magda (Chris’s mum).
Afterwards, we drove back to collect the results.
Actually, it surprises me that these places just give you the results,
particularly as we couldn't help reading the report...As we were driving home,
we were all quietly devastated as Chris read the results. The report confirmed
that the swollen Lymph nodes appeared consistent with Hodgkins...
