17 December 2008

My cancer diary – part 11

After an improvised sled, a blood clot, and some very tight stockings – Lynn is once again ready to share her story.

After an improvised sled, a blood clot, and some very tight stockings – Lynn is once again ready to share her story.

Lynn sent this mail on May 15, 2008. It was titled "Lynn's Anatomy Episode 11 : A huff and a puff"

Well it’s been rather a long time since I’ve given everyone an update – apologies for that – but I’m pleased to report that I’m doing so much better and stronger now and feeling more like my old self than I have in ages.

The last time Andre wrote, he told his version of events on Sunday 30 March when I landed up having a pulmonary embolism. But let me tell you all about it.

So I’d got out of hospital the previous Thursday, just before the Easter weekend, after my bout with radiation pneumonitis and after two weeks in bed, and being on cortisone, had pretty much lost all the muscle strength in my legs.

I’d had some physio in the hospital (I was so excited at the thought of physio thinking I was going to get a nice massage or two but alas, they made me exercise.) and had managed to toss the zimmerframe for a pair of crutches before I came home.

Still wabbly
I was still rather wobbly on my legs and couldn’t really manage stairs by myself and toilets without the help of a raised toilet seat (an absolute Godsend.).

I had a bit of a busy weekend with a work farewell on the Friday, a (beautiful) wedding out in Darling on the Saturday and overhead duty at church and lunch at friends on the Sunday. Late Sunday afternoon we came home and met Andre’s folks who were spending the night before flying out to Europe the next morning for their fabulous 6 month stint there.

So we were sitting in the lounge chatting and around 5.30 I decided I needed to get up as I couldn’t wait any longer for the loo. As I had to get up two sets of three steps to get to the loo, I generally waited until I REALLY needed to go because it was quite a mission to get there as I needed help. Typing this now I see the flaw in my logic but anyway, the bottom line was I didn’t want to have to go up and down more than was absolutely necessary.

So Andre starts helping me there and we get up the first steps and about a third of the way to the loo when I suddenly get really breathless. So I make Andre stop so I can catch my breath and I just… can’t. And he’s like “come on darling, it’s not much further” and I’m like “you don’t understand, I can’t breathe… and I’m not going anywhere.”

So he gets me a chair and plonks me in it and rushes to the bedroom to fetch ol’ Darth – our little oxygen machine – so that I can try and get some oxygen in my system.

After about 20 minutes of huffing and puffing with Darth’s aid, my breathing had almost returned to normal and we decided to try and make it the rest of the way to the loo.

Now, you can imagine that I was really quite desperate for the loo in the beginning and thankfully, my preoccupation with trying to breathe had taken my mind off it for half an hour, but as soon as I stood up again, the desperate toilet urges came back (have you noticed that too? When you need the loo it’s always worse when you stand up?) and I was moving at snails pace. So Andre just about hoisted me up the next three steps and then plonked me on another chair as I was exhausted and completely out of breath again even though I was on the oxygen.

So then his dad comes to our aid and between Andre and his (70-year-old) dad, hoist me to the toilet on the chair. Well, I felt almost like one of those slim and svelte jewish brides who get lifted in the air by at least 8 or so strong and strapping young lads as part of the wedding ceremony, only I was anything BUT slim-and-svelte-like and had two, er… strapping old-ish men lifting a me up slightly and heaving me along the passageway.

The sled
But get me there they did and then, as I was sitting contemplating (as one does) I had a brilliant idea about how to move me the rest of the length of the passage without killing my husband and father-in-law in the process - When moving heavy furniture we’ve often found it best to just lift a corner of say, the couch, at a time and place the feet on a blanket or rug and pull it along that way.

So using that as my inspiration, I asked Andre to get a blanket and place the chair on top of it and they could then pull me down the passage. So picture this, my dad-in-law in the front with the length of blanket over his shoulder like Santa pulling me along, Andre behind me stabilising the chair and pushing from behind, and my mom-in-law following along with Darth, plugging and unplugging him into various extension cords as we moved him along the passage.

The girls of course thought this was hilarious, particularly when Andre asked if we could borrow their rollerblades that they had on to turn the chair into a wheelchair. Thankfully they saw right through him and didn’t insist we give it a try.

Heads, Shoulders, Knees and Toes
Eventually we got to the bedroom but we were still none the wiser as to why I was struggling to get my breath back. We thought for a moment it was because I had maybe forgotten to take one of my meds so Andre gave me some soup and we popped some pills but an hour or so later I was still feeling pretty awful. My back felt sore and I was asking my mom-in-law to rub my back to try and ease the ache.

What felt like half an hour later but was actually longer than that I think, Andre decided that we needed to get to the hospital (my mom says I had a distinct purplish hue about me) but there was just no way I was getting in the car without oxygen.

So Andre started phoning the oxygen people (no portable oxygen in stock), the pharmacies (they don’t stock it), the hospitals (they can’t let it out the hospital) and eventually the doctor (who said we should call an ambulance). Of course why these things always happen on a Sunday night I’d love to know.

So we phoned the medical aid (and at 10 o’clock on a Sunday night someone actually answered the phone… I was genuinely impressed) and they were fantastic and phoned both ambulance services to see who could get to us quicker. About 10 minutes later Andre says (although it felt like at least an hour to me), the ambulance arrived with a discreet little bleep of their siren and red lights flashing to let us know they arrived.

The ambulance
Three macho ambulance dudes came in wheeling a gurney down the passage and whipped out their bleepy tests and machinery. They put me on an oxygen cylinder and I felt better almost immediately as some lovely concentrated oxygen rushed into my lungs.

Even though I’d been on Darth for about 5 hours, as he could only pump out 5 litres per minute, my pulse-ox was only at 75% (on oxygen). The oxygen tank pumps out up to 15 litres per minute which is why I felt so much better.

Anyway, they took my stats and put me on the gurney and off we trundled back down the passage and into the ambulance.

It’s quite weird being in the ambulance but the guys were really great, explaining what they were going to do every step of the way. Andre came with me with his dad and my mom following behind. So they stuck ECG monitors on me and I was beeping and bleeping much better when the head ambulance dude, Steve, says to me that they’re “just going to put up an IV so that everything is ready for the hospital”.

Struggling with the IV
So I’m thinking, you’ve got to be kidding. “Listen Steve” I say to him, “they struggle to get an IV in my arm when I’m lying still in a hospital bed, what makes you think you’re going to get it right in a moving ambulance?”

“No worries”, he says, “I’ll just ask Chris to pull over”. So then I’m thinking, oh boy here goes, but I’m not going to argue with him now am I? So true’s bob, he asks Chris to pull over and digs around in my arm a bit (which is really quite sore as you can imagine) and then I say “you didn’t get it in, did you?”

“uh no” he replies “we’re nearly there, we’ll just wait until we get to the hospital”

So we arrive in the emergency entrance of the hospital and they wheel me in (all feels very dramatic and ER like… there are quite a few people there but no one with an axe in his head or anything. I’m not sure if I’m relieved or disappointed).

The (very young) doctor on duty then has a go at putting at IV up (super ouch) and eventually they’re pumping… you guessed it… my favourite cortisone into me via IV. So if I wasn’t blown enough alredy… (see pic of me arriving in ER) After speaking to the on-call Oncologist, they decide to re-admit me to good old Ward B and I was greeted warmly by the night staff (I was only there a week previously after all).

It was now about midnight and I was starting to feel better after being on high-concentration oxygen, so told Andre he could go home and get some sleep (kind of me don’t you think?), and of course I wanted him to be there in the morning to explain to the girls that I was back in hospital (they were very disappointed that they’d missed out on the whole ambulance thing).

Back to ICU
The next morning Doc Rogers and Doc Wilson came to see me again and when I explained to them I felt like I suddenly hit a breathing wall, they ordered some blood thinning drugs that get injected into your stomach (oh yay.) and a chest CT to see what was going on.

By 10 o’clock I hadn’t had the drugs or the scan and was starting to feel seriously awful again so my darling husband started jumping up and down and within minutes I had the injections and was whisked off to radiology where they were very good and slid me from the bed to the CT machine as I was very wobbly on my legs and couldn’t really breathe without the ox so was very nervous about giving it up, even if only for a second.

A large blood clot
Well I’d only been back in the room for around half and hour when Doc Rogers came back and told me that the CT had revealed that I’d had a rather large pulmonary embolism – essentially a blood clot had got stuck in my one lung pretty much cutting it off from active duty which is why I was struggling to breathe.

Doc Rogers told me that I needed to go off to ICU where they could observe me closely and make sure I didn’t move – they didn’t want me having another one. So the team sprung into action and I was transferred to ICU where they have the coolest electronic beds that have remote controls that you can set your position – top, bottom, middle, up, down – all the parts move.

Well unlike December when I was in ICU for my head surgery, this time they were very busy… and very strict.

So the worst part about it was that the girls weren’t allowed in to see me but could just wave from the door.

A gorgeous pair of stockings
So I was hooked up to all the bleepy bleepy machines and fitted with a gorgeous pair of medical stockings – the really tight variety – as they suspected the clots came from my legs.

It wasn’t long before I needed the loo again and as hard as I tried, the nurse just would not let me out of bed to go to the loo or even bring me a comode (kind of like a loo on wheels). All she would bring me was a bedpan. But with my zooty remote control for my bed, and a bit of help and advice from the nurse, I finally managed to position myself so that I could get it right. Blessed relief but still pretty unpleasant. I can now officially use a bedpan.

Again I was blown away by the wonderful care of the ICU nurses. It really takes a very special kind of person to work in an ICU and to deal with what they have to deal with.

Once again I was (thankfully), the most healthy patient there and because it’s all so open I felt like I was an extra in one of my favourite medical dramas as doctors and nurses rushed in and out and patients were being “intubated” and they talked about the “pulse-ox this ” and “BP that”.

One evening some surgeons came in and actually did a tracheotomy on the lady next to me… right there.... It was really amazing.

I must say a very big thank you to one ICU nurse in particular, Phyllis Sorour, who was an absolute angel. So very kind, loving and gentle, she took genuine pleasure in caring and nothing was too much trouble. She also managed to get the girls passed the matron for a quick kiss and a hug which did me the world of good. Thanks Phyllis.

Last time I was in ICU I got no sleep as it’s a very busy place but thankfully this time I was allowed to have sleeping tablets otherwise I would have got no rest.

An interesting place
But it’s an interesting place ICU, because the people in there are generally very sick. Each morning when I’d wake up (not by a nurse wanting to do obs or the tea lady but when I was ready to… which strangely coincided with the change of shifts… ) I’d wonder if one of the patients might have died in the night.

I’m not sure if you’d be lucky or unlucky to know that you’re facing your end but I did notice in my short time there that those close to death often cried out to God and I wondered if they saw Him.

I also noticed that family and friends of the seriously ill people there reacted so differently to the situation. There were those that came in for a perfunctory hello and left within a minute, seemingly unable to come to terms with the grave illness or impending death, and others who would spend hours just holding the hand of an unconscious loved one, quietly giving gentle love and support.

I am thankful for my time in the ICU as a patient as it can be a pretty scary place and I’ve learned the importance of someone just BEING THERE. Andre and my mom were amazing, juggling things so that I was rarely ever alone.

Take a look at these legs
So on my second day in ICU a lady from the vascular surgeon’s practice arrived with a portable ultrasound machine (they seem to have portable everythings that come into ICU, even x-ray machines) to take an ultrasound of my legs to see if that’s where the blood clot originated from.

Apparently my calves were full of clots and I even had a wondering… no make that wandering… clot near my groin.

Thinking back, I had been complaining (yes I know that will come as a surprise to many of you ;0) about my left calf being sore. It felt like a sore muscle and we’d decided that it was because my muscles weren’t used to being exercised and I’d walked up all these steps for Margaret’s farewell and then at the wedding that I was stiff.

So we of course did what we thought you should do with stiff muscles… and gave my calves a good old massage with Deep Heat and everything. No doubt this is what dislodged the clot in the first place.

Fighting off the clots
So then I was put on Warfarin, another blood thinning agent, to try and prevent more clots forming. As for the ones that were already there I had to apparently be very still, not get out of bed for ANY reason and keep a beady eye on my pulse rate (one of the many things being constantly monitored).

Apparently if it got too high we were in trouble. The existing clots would apparently break down and be reabsorbed into the blood stream but the doc said we may need to surgically put this little doodab in that looks kind of like an umbrella to catch any more clots who wanted to go on vacation in my lung but thankfully in the end we didn’t have to do that.

To be honest I’m still not sure what would have been the decider because whenever I asked him how we would know if I was going to have another PE he’s say, “we don’t, you’ll just go… ( demonstrated by gripping neck and making eyes bulge out)”. Very helpful.

The night I heard that they might want to put the doodab in was one of Andre’s cycling nights and as he had been there most of the day with me, I knew I wasn’t going to see him in the evening. I also wasn’t allowed my cell phone in ICU so felt rather cut off from everybody. Two friends came to visit me earlier that evening and I told them the possible surgery news and asked them to phone home and relay the message. I was feeling a little anxious and desperately wanted to see Andre and was literally praying that he would come.

An answer to prayer
The next thing… in he walks. A true answer to prayer. He told me that he’d been cycling on the mountain and just got a strong feeling that he had to come and see me. So he turned around and came home, literally had a shower and was still out of breath (and starving hungry) when he strode into ICU. Of course I just burst into tears… my hero.

So why did I get the clots in my legs (otherwise known as Deep Vein Thrombosis, or DVT if you want a part in ER)?

Well apparently I was at high risk of them as I had:

  • been sedentary for a while (thanks to my previous 2 week stint in hospital)
  • recent surgery
  • family history (my dad suffers from DVT)
  • cancer

So frankly I think we should have all been surprised if I DIDN’T get it.

Out of ICU
After 4 days in ICU, by which time I’d mastered both my bed and the bedpan, I was moved back down to a general ward (I now knew both the day and night staff in Ward B by name).

This time I was with two other ladies and although I admit to being disappointed not to have a private room at first, I really enjoyed the camaraderie and care of my other ‘inmates’.

After another 5 days I was discharged and was very pleased that my legs still worked. I was really worried that I would regress while in hospital again and not be able to walk. So although wobbly on my feet I could at least stand and move around.

And now?
Since leaving hospital I have been getting better in leaps and bounds. I was still on Darth and Andre organized an oxygen cylinder for me at home in case I had another “episode”. He called it my “noo noo” as it went everywhere with us… just in case.

I actually used it once too. But I’ve been off oxygen for going on three weeks now.

Things were very up and down but have settled somewhat and as I said at the beginning, I’m starting to feel much more like myself with my old energy levels returning.

Speaking faster
I have also started speaking faster again (or so I’ve been told) and can get through a whole story without sounding like a steam train. I’m sure some people wish I couldn’t – they were enjoying the relative peace.

Andre and the girls and I spent a wonderful 10 days in Kleinbrak – a lovely little village between Mossel Bay and George – and it was just what the proverbial doctor ordered.

Necessity being the mother of invention… and getting one off one’s bum… I had to get with the climbing programme as the lovely house we stayed in had about 12 steps you had to climb to get in so needless to say I had to get used to climbing the stairs. So I came back stronger than ever, not having to use my toilet seat (a good thing as George is a four hour road trip and it was a bit embarrassing carrying my toilet seat into the roadside WIMPY) and able to manage the stairs by myself. Which is a good thing too as my mom has gone to Dubai to be with my sister, but more about that later.

So last week I went back to the onc and he said that he didn’t want me to continue with the chemo because we’re not sure whether that triggered the original lung thing or not. As it is, the side effects and the side effects of the side effects have been the worst of this all.

And get this, he said that when weighing up the risk vs reward of the chemo, he didn’t think it was worth it as the chemo would be only about 20% efficacious (that’s mos a big word ne.) I never realized the odds were so low.

Good news
Anyway, he sent me for another head MRI, chest x-ray and liver ultrasound. The head MRI revealed that the tumour has shrunk in size by about 50% and will likely go on shrinking and there are no new tumours.

This is really good news as we would never expect to see nothing as some scar tissue would always remain.

More importantly, I haven’t had headaches for weeks now which is an indication that things are going well.

The chest x-ray showed that the radiation pneumonitis is now a thing of the past and the liver ultrasound showed that my liver and all my other organs for that matter are clear from any tumours.

I asked why I was having the liver ultrasound and the doc explained that the liver acts like the body’s filter so as such, it’s one of the first places that funnies can pop up. As for chesties, they’re a little more difficult to take a reading on as they were only picked up by the (very expensive and well motivated) PET scan.

So I had no “symptoms” that gave any clues that there might be something amiss there so there is no “alleviation of symptoms” – like my headaches for my head thing – to look for. They also weren’t picked up on X-ray. However, I’m sure they have been nuked to oblivion and feel very confident that I am almost 100% clear and may even officially be in remission (to use the correct cancer lingo ;0). Praise God.

Getting off the drugs
So the plan at the moment is to wean me off the drugs that I’m still on and then check me out again in 3 months. Cortisone is the one I can’t wait to get off because besides all other awful things it’s done to me (the swelling, weight gain, angry red stretch marks, muscle issues) we think it’s also the culprit behind what they call “taste perversion’ which is essentially is a fancy way of saying that pretty much everything tastes terrible.

I thought it was my imagination at first and then thought it might be something to do with the chemo but the effect really started after I came out of hospital and I hadn’t had chemo in about a month so thought it couldn’t be that.

For me it’s kind of like a dull, soapy taste that permeates everything – even chocolate. I find myself looking with envy at people enjoying an ice cream or chocolate as I desperately want to enjoy the taste of a chocolate but know that it’s going to taste awful.

The optimistic me still tries every now and again though, just in case it’s better. As yet no luck though.

I still have to continue on the Warfarin (which requires weekly blood tests as they try and figure out the right dosage for me) and wear the very unsexy medical stockings (like 24/7) for the foreseeable future. I just hope I can get rid of the stockings by summer because they will most definitely pose a fashion challenge.

The kids
The kids have been a huge support and every time they realise I’ve managed to do something I hadn’t been able to before, they’re like “Yay mommy. Look how far you’ve walked/you managed the steps/you got off the loo by yourself” and they are genuinely thrilled at my progress.

I’ve loved being at home with them in the afternoons and playing mom and there have been no major disasters since my mom left (I even remembered to send the girls to school in winter uniform on the right day… almost… and anyway, Courtney wasn’t the only grade 3 wearing a tracksuit when she wasn’t supposed to… phew.).

And what about my mom and sister?
Well as you know, my sister, Penny was diagnosed with breast cancer about a month after I was diagnosed. A bit of a shocker for my family (there are just the two of us) where there is no history of cancer.

She started a hectic form of chemo and flew out here with her daughter Lauren (then 9 months old), two days after her first round of chemo so she could see me (unbelievable huh.).

We were on our way for a facial when the first lung incident happened and I was still in hospital when she had to go back again.

Her hair fell out and she eventually decided to “do a Britney” but she has such a lovely shaped face that I think she looks pretty cool.

She went for an MRI after her third round of chemo and while the tumour had responded very well to the treatment (from 7 cm to 1 cm), the MRI revealed a second tumour.

Her oncologist sent her to a breast surgeon who recommended a full masectomy (rather than a lumpectomy which we had been expecting) due to the aggressive nature of the tumour and the fact that the MRI had revealed a second tumour.

So they did the masectomy but also did the reconstruction at the same time using tissue and muscle from her tummy. How cool is that? So essentially she had a tummy tuck and boob job all in one. I’m trying so hard not to be envious.

Because it’s quite hectic surgery, she is not allowed to pick up anything heavy for 2 months – quite difficult when you have a 10kg baby who’s learning to crawl and pull herself up on everything.

Five days
The surgery was scheduled within the week of my sister seeing the surgeon so my mom had to get there quickly and left here five days after my sister saw the surgeon initially. She arrived at the airport in Dubai and then they dropped my sister off at the hospital.

My sister is doing really well and went home six days later. It’s a good thing they did a full masectomy as the biopsy revealed that she had THREE tumours and two of the nine nodes they removed were malignant.

So she has to go for another three rounds of chemo and then seven weeks of radiation which she’ll hopefully have in SA as the nearest treatment facility is 150 km away from where she lives.

Please continue to pray for her as she gets septicemia very easily and she has a lot of wounds that are healing.

She is in good spirits though – the hardest part for her is not being able to pick up and cuddle Lauren because of her wounds – and my mom is just the best granny in the world so Lauren is getting lots of love.

All the support
I’ve said it a couple of times I know but I just need to say it again. Thank you to you all for your love, support, dinners (Herschel moms:0) and most importantly, prayers.

You have really made what could have been one of our darkest times, anything but. I feel so blessed to have so many people DEMONSTRATE how much they love and care for me. Normally you only get to hear the good stuff when you’re dead (well I’m assuming so anyway). It’s made the world of difference to me.

Don’t wait a single moment to tell others that you care about how you feel.

Lots of love and God’s richest blessings

- (Lynn Ferreira, May 15, 2008)

Read more:
My cancer diary - part 1
My cancer diary - part 2
My cancer diary - part 3
My cancer diary - part 4
My cancer diary - part 5
My cancer diary - part 6
My cancer diary - part 7
My cancer diary - part 8
My cancer diary - part 9
My cancer diary - part 10
My cancer diary - part 11
My cancer diary - part 12
My cancer diary - part 13
My cancer diary - part 14
My cancer diary - part 15

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