Barrels of fun = PICC line issues

24^th April, 2012

We were due back at the hospital to flush & clean Chris's PICC line. The apt was originally at 4pm; however, due to the public holiday (tomorrow), they changed the apt to 8am.

Chris didn’t sleep at all last night, so the timing couldn’t have been better. Chris was in a lot of pain from the PICC line. She had bad pain under her armpit, which was shooting down her arm. We arrived at the hospital at 7.30am, hoping we could get someone to look at it quickly.

We thought that we would be in & out of the hospital today but because of the pain that Chris was feeling,  the nurse wanted to call the Dr to get them to check that there was no clotting.

The hours rolled by & while sitting in the waiting room, several conversations were had with some of the regular ladies that we have seen coming in for their chemo. Stories were shared about the effects of chemo, different meds, pain & types of cancers.

One lovely elder lady had breast cancer & had a mastectomy. She has been having chemo since Dec 2011, which was expected to continue to August. She had a beautiful smile & talked to us about how she used to be so active but since starting chemo, she struggles. She went on to talk about the day she decided to shave off her hair. She was a real sweetie. During the conversation, it struck me how amazing the human spirit is. 

Some good news is that Chris was feeling slightly brighter (from the chemo side effects), although she is still very fatigued, tired & queasy, there are moments where I can see the real Chris peeking through & it makes me so happy.  

The hours rolled by & we waited & waited for a Dr, then finally an assistant Registrar (of Dr Blood) came & checked over Chris. He agreed that there appeared to be an issue (Oh really). 

The next thing we knew, the elusive Dr Blood came striding toward Chris & he explained that she would need an ultra sound & chest X-ray (to check out what was going on in there). He went on to say that the hospital was very busy today & that we needed to go over to Westmead Private Hospital (as we would get the results quicker). So we popped over there.. Tests were done, and then we headed back to the Cancer Clinic.

We then waited and waited. Eventually, the assistant Registrar confirmed that a clot had formed around the PICC line. Apparently, the reason this happened was because Chris’s type of cancer is a blood cancer & her blood was reacting to the foreign object (PICC line) that was placed in her body. He just said it’s one of those things, it doesn’t necessarily happen to everyone with this type of Cancer but Chris was just one of the lucky ones (Cheer squad sings out Hoorah). He then added that Dr Blood doesn’t want the PICC line removed, therefore, Chris now needs to inject herself with Clexane (blood thinner) twice a day (for the next 3 months).

This should eventually assist with the treatment of the clot and reduce the risk of future clots. He also prescribed Chris with Endone (painkiller) to assist with the pain. He said that it will take about a week for the Clexane to do its job.

Ah fabulous, the original reason for Chris’s PICC line was to try to avoid excessive pricks + to assist with not having to have the chemo injected directly  into her veins due to the pain, vein damage & withering. Alas, now Chris will have to have an added two pricks a day for the next three months!!!!

Finally, the go ahead was given to the nurse to clean/flush the PICC line. Chris must have the PICC line clean/flushed every 7 days. This is required to prevent clogging & reduce the risk of infection.

The nurse also gave Chris her first Clexane injection (into her stomach). The nurse showed us how we should correctly inject the Clexane ourselves at home.

After nearly an 11 hour stint at the hospital, we wearily took ourselves home. It was a big long day at the hospital but on a positive note, we found out the cause of the pain & at least have a solution...hopefully back on track!

 

 

 

Weekend of hibernation

 22^nd April, 2012

Picking up from the last post, it appears days 3, 4, 5.. after chemo have gotten worse. From there, Chris has slightly picked up but unfortunately this doesn’t mean she’s back to her old self, as she is still quite fatigued and experiencing nausea etc.

Susie & Magda have been staying over for the last few nights & their selfless caring nature has been incredible. 

Susie prepares meals at her place in Balmain & then drives it out to our house (as Chris hasn't been able to stomach the smell of food while it is cooking). Bless Susie; she brings organic food, wheatgrass shots & vitamin boosts for Chris + peppermint oil, so that I can burn it in the oil burner to help ease her nausea.

Magda is truly a saint, always whipping up nutritious meals in a matter of minutes (she makes it look so easy) for Chris to nibble on whenever she might feel like it.

Truly, we have all banded together like some unstoppable femme posse of care. <3

Finally, an extra massive thank you to Micha & Magda for the exceptional job on the back yard.. between the two of them, they did a major backyard blitz job & it looks INCREDIBLE! 

‘Not a great start to the day’

21^st April, 2012

Chris woke up still feeling like her head was being crushed in a vice. She still felt fatigued & queasy. She has sore teeth, a mouth ulcer & a persistent dry mouth. Chris took her anti-nausea meds today & they helped with the queasiness.

Chris’s energy was low & my main focus was getting her to rest & eat highly nutritious food. So, I decided to make some good old fashioned chicken soup...organic, filled with vegies & love.

 

Our Saturday ended up being filled with lots of lounging together on the couch, snuggling..Yaye!

 

 

What NOT to say/do to someone with Cancer

 April 21st, 2012

Do not visit if you are unwell or have been around someone that is unwell. Chemo not only kills the bad cells, it kills the good ones too. A cancer patient undergoing chemo can’t fight infection, so please stay away. If they catch an infection it could be life threatening!

Do not ignore them. Do not stop calling them because suddenly you don’t know what to say. Do not try to avoid them in social situations because you are uncomfortable.

Go up to them. Call them. E-mail them. Tell them, first, that you heard about the cancer. Tell them second that you think it sucks and you’re sorry to hear about it.

Don’t talk about your uncle who died of the same cancer. Don’t talk about how your whole family has had cancer, and you’ll probably die of it, too. Do not talk about how many people die of it every year. Don’t talk about death.

Oh Hodgkin’s Lymphoma, isn’t that the good cancer.

I understand this is an expression of goodwill, but you wouldn’t wish cancer on your worst enemy! And the chemo treatment alone, gives you the possibility of chemo-related cancers for the rest of your life. So, calling it “the good cancer” is definitely not the thing to say as you are effectively invalidating that person’s entire experience. You leave that person thinking ‘well if I have a ‘good cancer’, my fear must be irrational.

Don’t talk about how you once got diagnosed with pneumonia, so you can understand what it’s like. No you can’t. Don’t try. Tell them you can’t even imagine what it’s like to go through something like this.

Do not talk about the alternative medicine that you read about in Crazy monthly that is sure to cure them of their disease. Don’t tell them that their treatment isn’t good for them, and that lots of people end up dying from the treatments, or that chemotherapy is just a big conspiracy between the government and the pharmaceutical companies, etc., etc. Don’t tell them how they got it. Just stop. They don’t need to hear about it.

Do not talk about the people you know who have had cancer and are now doing great. Don’t get me wrong, this news is fantastic & again I understand this is an expression of goodwill, however cancer & treatment is very much based on the individual. It totally depends on your body and your body’s reaction to the treatment.

If they are sad about it, don’t tell them that they shouldn’t be sad. They have a right to be sad, or exhausted, or whatever it is they feel. Don’t tell them what to do.

Ask them about the treatment – then listen to the response. It might be a long response, with a lot of medical terms. Listen anyway. It’s all they probably think about right now, anyway, so just let them talk about it.

Give them a hug, or a handshake, or a pat on the back. Touch them somehow. Tell them that you’re concerned for them, and you’re looking forward to them being a cancer survivor.

Do not give them the line, “if there’s anything I can do just tell me…”, unless you are absolutely certain that you would do ANYTHING for them. Just don’t say it, because most people don’t mean it. If you really want to do something for them, come up with the idea yourself, and then do it. Send flowers, or a book, or bring over dinner for them.

Do not say/do things that will make them feel pressured. They need time to cope & adjust. They have a long bumpy, unpredictable road ahead. While some days will be great, others will not, so taking day by day is the only way!

‘Head Crushed in a Vice’

20^th April, 2012

Friday, day 3 after Chris’s 1^st chemo treatment (Chemo day was counted as day 1).  Today, the Dexamethasone wasn’t having the same effect on her as it did yesterday.

Chris told me the day started out ok, aside from feeling a bit queasy. She felt active in the morning, then suddenly felt really rough & dizzy & had no choice but to take it easy for the rest of the day.

Chris said that her head felt like it was being crushed in a vice, she was very fatigued, felt queasy & her mouth was constantly dry.

Magda spent the day looking after Chris, ensuring she stayed hydrated & nourished.

By the time I got home from work, Chris’s voice was really soft & quiet. I had to lean in close just to hear her. This was a dramatic change from yesterday & I’m quietly worried about the days to come.. Fingers crossed, this is the worst she will feel.

 

 

 

 

Flying on Dexamethasone

19^th April, 2012

Magda has been staying over the last few days (& Susie also but had to leave last night). In the morning, Magda & I we were both down stairs when Chris walked down yawned, smiled & said yeah, I feel OK.

That was just fantastic.. The day passed by with Chris feeling pretty Ok. She was actually pumped up, buzzing around & couldn't keep still at all. She had difficulty focusing on one task & also had blurry vision. I do think this all may have had something to do with the 2 x Dexamethasone (steroids) she had to take that morning. They only give her enough of those tablets to last for just the two days after the treatment.

Either way, we were happy to see that she wasn’t suddenly sickly & obviously we all hope that this continues, although we know that this is a process which is to monitored day by day (the sickly times can hit any day). 

Today there was no fever (a particular symptom of Hodgkins) Yaye! Chris also thought that the swelling under her arm pit had reduced... double yaye! 

Although the reduced swelling & lack of fever may be from the effects of the Dexamethasone (known to mask fevers & acts as an anti-inflammatory), we like to think that it's the treatment taking effect already.. which it may be!

Despite Chris seeming to be a bit all over the place...I must say today has been a good one.. Yaye, Yaye, Yaye!!!!

Chemotherapy Day 1

18th April, 2012

The heavens opened up on the morning of Chris’s 1^st chemo appointment. We decided to ourselves that it was like a cleansing & a new beginning as it really bucketed down the entire day.

Anyway, Chris, Susie Magda & I all made our way to the Crown Princess Mary Cancer Clinic. We were all super anxious and just trying to keep ourselves together (on the outside) especially for Chris.

Once we arrived, it just happened to be one of the busiest days ever at the clinic. We waited from 9.30am till around 12.00pm just to be seen. 

In the waiting room there was a basket full of the most gorgeous little knitted teddy bears & it’s like they were placed there as Chris’s guardians.. It was really auspicious.

The nurses were whipping around like wildfire, from patient to patient, administering their chemo.

Eventually, after much sitting around & anxiously waiting, Chris’s name was called. This was it! 

I went in with Chris & a lovely Irish nurse began by measuring Chris’s weight & taking her vitals. A blood test was taken yesterday & the Dr had previously looked at the results to decide whether she could take the chemo today. They do this to look at the percentage of Neutrophils (white blood cells) among other things. We were told that with this treatment they expect her white blood count to eventually drop to 0, which means that Chris will have a poor immune system, so, 0 chance of fighting off any type sickness or infection. 

We were seated in the chemo ward where there were lazy boy recliners with a guest chair on one side & an IV pole on the other. I guess they want to make patients as comfortable as possible, even though Chris’s chair was broken and quite uncomfortable (for the length of time she had to sit on it + faux leather gets kind of sticky when you’re feeling hot from the chemo).

Chemo obviously causes nausea and vomiting, so before we knew it Chris was provided with her pre meds. This included anti nausea, steroid tablets +an acid reflux liquid to drink. 

The nurse started a saline solution drip for Chris, prior to introducing the Chemo.

Chris was introduced to the Pharmacist, who came over to talk to Chris about the Chemo side effects + the side effects of the pre + post meds that she also needed to take. She then left Chris with a bunch of discharge meds to take home to take over the next couple of days.

Adriamycin

Chris & I sat together as the nurse explained the procedure. She started with the Adriamycin. We both watched as she started to push (that means slowly inject it into her PICC line) in what looked like a large turkey baster.. Yes, it was freaky... OMG, just watching cytotoxic chemicals twirl around the line, making its way closer & closer into Chris’s body was scary but then it entered & she didn’t spontaneously combust, she was Ok.. So far so good. I mean, this stuff even looks evil, its bright red & has the nickname of ‘The red devil’. However, the great news is that this particular drug is the one that actually hits the cancer the hardest.. Woot!

The Adriamycin is known to cause mouth sores. To help prevent this you can suck on ice or iceblocks. Chris loved the idea and opted for the paddle pop lemonade ice blocks. I think she had one in her mouth the whole time it was being administered, which was great, I mean who wants mouth sores. 

Warning it really is RED and it turns your urine RED too. Chris’s nurse did let her know this so she didn’t freak out. Chris also had to go to the toilet a lot as they were pumping so much saline into her. Yup, that means dragging along your IV pole & lines too.. It was like a funny waltz..a dance of madness between Chris, the IV pole, her lines and the toilet.

Another good point that we had read was — do NOT eat your favourite foods on or around chemo day because you can start associating them with chemo.



What’s up next Bleomycin –let’s hear it for Bleomycin!  

This one also comes out in a turkey baster type syringe but is much smaller than the Adriamycin. Bleo is pushed in slowly, the same way as the Adriamycin. The Bleo is a clear, looks utterly harmless but this is the drug that’s known for causing damage to the lungs.


Next cab off the rank was Vinblastine 

It also comes out in the turkey baster type syringe. The Vinblastine is pushed in slowly, the same way as the other two. Vinblastine is clear in colour & its main side effect is nerve damage.

And finally the Dastardly Dacarbazine

The Dastardly D drug came out in a black bag. This is to protect it from exposure to light. This is the one that was most likely to make you sick to your stomach.  Dacarbazine causes nausea and vomiting in about 90%+ of people treated with it who don’t receive it with anti-nausea tablets. 

At around 15 minutes into the Dacarbazine, Chris started to feel itchy, scratching at her chest & neck. She also started feeling hot & began to sweat. She told the nurse & straight away the nurse stopped the Dacarbazine & just ran the saline. The nurse called over the Dr who advised her to just run the saline for a ½ hour & then to slowly reintroduce the Dacarbazine. They also gave her an antihistamine tablet to assist with the itching.

We all felt pretty grateful..Thinking if this was the worst she’d feel during the treatment, then that wasn’t too bad.

During the treatment, Chris was pretty hyper which probably had something to do with the steroids they give her to assist her to get through the treatment.

Chris was sucking back ice blocks like no tomorrow & she even had a small meal whilst the treatment was going.. Yaye!

The nurses were amazing. Only one visitor per patient was allowed but they let two of us in because it was Chris’s first time. We all swapped around throughout the day, Magda, Rob, Susie & I, that way we could all spend some time with Chris throughout her treatment. 

So the last of the Dacarbazine went in Ok & finally we were ready to roll out of there. After a good 9 hours, such a long day indeed but that’s round 1 out the way!

It’s funny, because I kept looking at Chris waiting for something to suddenly happen but she was mostly Ok, phew what a RELIEF.

Once we got home we all just chilled. I gave Chris her sleeping tablet around 9.30pm to try to help her sleep. Chris finally slept until around 4.00am, when she woke up with a bit of a sore tummy. I made her a cup of tea and she also drank a cup of prune juice. We later popped back up to bed and she eventually slept soundly until about 9.00am.
 

A strong person is not the one who doesn't cry. A strong person is one who is quiet and sheds tears for a moment, and then picks up her sword and fights again..

Anonymous

PICC line Insertion

17^th April, 2012

After the chemotherapy education, the nurse grabbed Chris to insert the PICC line. Susie went in with Chris for moral support & shot an amazing video of the whole procedure (as seen below).

A PICC line is a long, thin, flexible tube known as a peripheral catheter. It is inserted into one of the large veins of the arm near the bend of the elbow. It is then pushed through the vein until the tip sits in a large vein just above the heart.

The PICC line is useful as it can stop veins from withering away from constant chemotherapy treatment (the chemo can ruin your veins). So, by having the PICC line inserted, it basically means less pricks for Chris (blood tests will still need to be done the usual way) & a few saved veins.

Chemotherapy education day..

17th April, 2012
 
Today was the chemotherapy education day. Chris, Magda, Susie & myself all bundled into the car & made our way to the Crown Princess Mary Cancer clinic.

Once we got there we were ushered into a room where they played a 25 minute video about chemotherapy. The video showed the personal experience of other patients...what to expect, side effects, costs etc.

It was quite emotional, the room was filled with recently diagnosed patients & their families. Yes, we all got a bit teary, I mean, this was not a feel good movie but we all know that this treatment is necessary & yes, this treatment is what will kill the cancer, yaye!

After the video, the pharmacist chatted further about chemo i.e. what to do when your side effects get dangerous, one in particular that he was referring to was as soon as your temperature reaches 38 degrees = get your ass straight back to hospital as you could be neutropenic, see little explanation below "Neutropenia"

Neutropenia is a condition in which the number of neutrophils in the bloodstream is decreased. Neutrophils are a type of white blood cells, so neutropenia affects the body's ability to fight off infections.

He also talked about the process of mixing up the different types of chemo treatments & how some particular treatments can take a while to prepare (included one of Chris's), therefore, there can be a long ass wait time. Chris’s first treatment tomorrow is estimated to take 6 hours.

It amazes me that these drugs were originally used as weapons of mass destruction (i.e. nitrogen mustard gas) yet now they can be used to somehow cure this debilitating disease, scary & incredible.

See picture below mixing chemo "Oh really" lol.

Me & my baby, Ah I love that smile....

My adorable Chris & the beautiful Magda!

Feeling grateful .....

I was just thinking about how extraordinary people are, that when family, friends & even strangers hear about Chris's situation, it honestly brings out some of the most beautiful qualities in people.

We are both so grateful for everyone's well wishes, love & support, you know it really does honestly help & it is so very heartening.

So today, we really just want to say thank you for all your support. Yes, this will be a bit of a journey but without all you, the road ahead would seem so much longer.

You all know who you are & how you have touched our lives.

“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” Christopher Reeve 

Updates...

April 15^th 2012,

Since Easter, we have been preparing both physically & mentally for the chemotherapy.  I went & bought vital greens powder, full of vitamin super foods to help boost Chris’s immune system.

Unfortunately, Chris has been feeling pretty terrible all of this past week. The cancer seems to be spreading. The lymph glands under her left arm are now quite swollen & have increased in size. It makes for uncomfortable sleeping & movement, in general. I am so aware when we are in bed that she is uncomfortable as she tosses & turns through the night.

The past week, she hasn’t gone to work but has worked from home a couple of days. Chris is constantly running a fever & her energy levels are low as she is really lethargic.

Really, the treatment couldn’t come soon enough, seriously, enough is enough, and it’s time for these suckers to die!!

We are both anxious about the treatment (how the side effects may specifically effect Chris) but it is necessary, as it’s the only way for Chris to start to heal.

And heal she will!!! Fingers crossed, in 6 months, this will all be behind us!

We have a date..........

April 5th, 2012,

Chris got a call advising that she was booked in for chemo on the 18th April, 2012, & prior to that they had her booked in for chemo education on the 17th. Chris was also booked in for more blood tests & another ECG on the 11th + a PICC Line was going to be inserted on one of those dates.

The type of chemotherapy treatment that Chris will be receiving will be ABVD (Adriamycin, Bleomycin,Vinblastine and Dacarbazine). This is to be given every 14 days. Under the clinical trial she will undergo two cycles of chemotherapy (which is two months) then she will undergo another PET scan to see how the treatment is progressing & then under go further chemotherapy.

So, we could start off Easter with a planned date to kill off these suckers. We all felt better about that & planned to have a nice relaxing Easter spending time together at Susie's wonderful house, in Balmain. All the Michaels family came together, to eat & just be together, it was so perfect. It's funny, people say you never appreciate what you have & I tell you, it's so true.
We were all cherishing every moment together. We all couldn't love Chris anymore if we tried.
Throughout this process, she has rarely broken down & maintains strength & positivity throughout...she really is something!

Back to the Haematologist..........

3rd April, 2012,

Apt with the Haematologist aka Dr Blood.....So yes, it was the day we had all been waiting for..Chris, Magda, Susie & I were all there, yes we are a force to be reckoned with! So Dr Blood started to talk about Chris's bone marrow biopsy & we were all on the edge of our seats. He told us her bone marrow was clear... Ah big sigh, phew, this was fantastic! He went on to say that even though there was a small spot showing in her spleen & below her diaphragm, he would not be changing her staging. He asked her about how she felt about the clinical trial & she let him know that yes, she will participate in it. The trial would also help future patients with Hodgkins Lymphoma & Chris liked the idea of that.

We talked to him further about natural therapies, as we had read about the B17 apricot kernels & spoke to him about Chris seeing an oncologist naturopath that helps people strengthen their immune systems prior & during chemo. He said yes, pursue this but just to let him know exactly what herbs were prescribed, as some could counteract with the chemo. We all felt good with Dr blood & we felt like he was our new "god". The man with the plan to help us kill off the Lymphoma.

The Dr doesn't yet have a start date for Chris's chemo treatment & we were a little disheartened about that but he told us, Chris would get a call tomorrow & the nurse from the clinical trial would book her in as soon as possible.