jenny wood

It’s just a flesh wound

My guest blogger seems to have upstaged me so I’m taking over again! Thanks Sophie for your lovely contribution I love you heaps.

Today is ‘verdict day’ so it’s an odd day to update the blog but it’s a good time to share my past week and clear my mind in doing so.

T10636229_10152421456294506_7077982170405306639_nhis beast of a cancer is determined to make a fashion model out of me. Now that I am hairless, one breasted and having to carry two drainage tubes around in a floral bag the picture is perfect.  I had a few additions in hospital such as the long white socks and the bandage over the cannula. Apparently it’s all for the good.

If I could be so vain as to say my best attributes have gone, I would say it but perhaps it’s that my vices have been stripped from me and that can be a good thing. It forces me to live life for the right reasons. Besides, who needs a breast when it’s trying to kill you? Who needs hair when you have to keep washing it and cutting it. Apparently it will grow back. I already have stumpy little eye lashes and eyebrows growing.

images-1The surgery wasn’t so bad. I took panadol and off I went, showering myself the morning after surgery and feeling pretty good overall. My underarm is giving me the most grief as it has a strange crater in it. I seem to have a lot of weird sensations, including pain, under there but I guess it will subside.  I also have numbness, intermittent coldness and a feeling that a mouse is running up the inside of my arm. Maybe I should remove the cheese from my armpit (mouse… cheese… never mind).

I’m so pleased that I kept up my exercise as I am still feeling so very fit and have very little fatigue. I can’t do any for 4 weeks now so that’s disappointing but at least I have a good starting point.

They put 100 ml of saline into the expander, which isn’t anything to write home about but in 2 weeks time they will add more and keep doing that until I am ‘balanced’.  Sorry… no photos. I draw the line there and I’m sure you’re pleased about that. Sophie couldn’t wait to see the war zone but not everyone has her warped curiosity.

I had a huge room of my own in the hospital for 5 nights and the nurses were calling me the queen. Given that my arm exercises include a ‘Queen like wave’ I showed them just how right they were. Although they were all lovely and I was very well treated (apart from the food!!!) I am very happy to be at home. There’s no place like home.

I would have been home after 2 days but the drainage from the wounds was (and still is) flowing a little too much. Hopefully the drainage tubes will come out soon as I am not fond of dragging them around with me. Yesterday was my dear MOTH’s birthday and after waiting all day for the district nurse to arrive we went to the movies and out to dinner. I had my drainage tubes in a bag under my coat, my wig and makeup back on and off we went. A tiring but fun day to celebrate  his birthday and the ignorance which could be called bliss. Today is ‘verdict day’.

 Verdict day

The surgeons and doctors had a forum to discuss my ‘special case’ yesterday. They have told me on a regular basis that I am ‘unusual’. Given that the 1st tumour shrunk with the first chemo (Paclitaxol ) but the 2nd tumour grew on it. If, in fact, it WAS a tumour. Both tumours grew on the 2nd chemo (AC). I’ve no idea when the lymph glands became malignant or how many (yet). I don’t know if there is any spread or if I need more chemo and radiotherapy. Surely 6 months of chemo is enough but if it’s necessary I’ll be guided by them. I’ve no idea how they will decide which type of chemo to give me.

So today is the day the doctors will decide how to continue with treatment, given the limited options of Triple Negative Breast cancer and this will be discussed with Colin and I this afternoon. I don’t know if I should hope for chemo and radiotherapy or not. Part of me just wants to get on with my life and the other part says ‘give me what I need to get rid of this thing’. I have faith in the surgeons, although mine is away this week so I will see a registrar.

Watch this space…

Last but not least

A big thank you to everyone for your prayers, well wishes, cards, flowers etc. We both feel really blessed to have such wonderful friends and family surrounding us with love and support. I know I haven’t personally thanked people for the cards etc but I really have appreciated your sentiments. It boosts me no end. I personally want to give a big hug to the MOTH and my 3 kids for being such troupers. Shan has been in NY but has been phoning and messaging me daily. I can’t wait to see him!

 

A tough decision… but who needs breasts?

556963777To follow on from last weeks post… I have more news but it’s still filled with ‘ifs and maybes’. That uncertainty which I know and hate.

To help with uncertainty I’ve made a decision for myself. After a long hard think about it and discussions with the family… I’ve decided to have a mastectomy (left breast) next Wednesday regardless of the ‘new lump’ cancer status. That was a pretty hard decision to make but once I made it I felt relieved. Who wants to live the rest of their life with lumpy boobs and potential tumours that grow with the speed of light? I’ve had up to 15 cysts in each breast from the age of 17 which makes self-lump detection impossible. The breast screen didn’t pick up the tumour last October and it grew rapidly over 3 months to golf ball size. How could I ever relax?

The ‘new’ lump is growing dramatically and feels very much like the ‘old’ one. Hard, irregular, immobile and sore. The old tumour is also growing. There is a race going on and I feel like a lump factory! The surgeon is pretty certain that the new lump is malignant and she would be doing a mastectomy anyhow if that’s the case.

Here are the bullet points again:

  • I will have a full reconstruction during the surgery providing the tumours aren’t bigger than 5cm and haven’t spread into the chest wall. If this is the case, I will need radiotherapy and they will put a balloon (!) in there to hold the space and the reconstruction will be done after treatment finishes. Colin said he is going to chase me around with a pin.
  • I probably won’t have my current chemo again but may need to go back on the old one (TBC)
  • I may need all of the lymph nodes removed because they look ‘suspicious’ but they will test them while I’m under anaesthetic and decide then
  • Surgery is next Wednesday the 10th of Sep but I have no notification yet so I don’t know times. I’m not even really certain which hospital I will be in
  • I need to see a plastic surgeon but I have no notification yet so I don’t know times (!)
  • It’s all being done in such a rush the doctors are in a spin. They had a meeting yesterday to discuss my situation which they said is very complex. Well yeah… I am not a simple person. Even my breasts are complicated ha ha.
  • I don’t have to have the core biopsies tomorrow. YAY!!!!!! I have a very busy weekend so I can party on.

I feel peaceful and happy with my decision. Many of my friends have offered to donate their breasts as they feel they are too well endowed. I have such generous friends. I wonder what they would do if I said ‘yes please’ with a serious face. I may take all donations and make a collage out of them. Ew!!

I don’t know how they will do the reconstruction but I’ll find out soon. I hope they collect bits of fat from hips, thighs and buttocks. The balloon sounds interesting but I’m worried about what colour it is. You know how important that is to me.

Arty news

Luther College artist in residence project. 'Noahs ark'

Luther College artist in residence project. ‘Noahs ark’

Last week I was approached by a book publisher to illustrate a children’s book. I’ve now signed the contract so that means I’d better do it!!

I’ve got my Artist in Residence position at Luther College with my artwork to complete, classes to teach and I have several commissioned jobs waiting to be done.

Like so often in life, a door closed and another one has opened. I think I’m officially an artist. Wow that sounds weird. I don’t even think my art is good but I enjoy doing it and others seem to like it. I have sold more than 60 pieces of artwork since March this year along with products and prints. I have to pinch myself sometimes. I’m loving the expression and creativity it releases in me without the need for concentration or stress. It’s just as well because concentration really isn’t happening in this little brain lately. At least I have a break from chemo and will be able to construct a sentence without the need for charades when I can’t find the words.

I’ve been sharing my story with the kids at Luther College and how getting cancer has opened a whole new world for me and that with bad things there is always good if you look for them. To prove it, I’ve told them how I can draw my eyebrows on differently every day and wear different wigs. They give me that ‘gee you’re a weird person’ look that teenagers do.

I’ve had so many opportunities and wonderful experiences as a result of spending time on my art that I can only see it as a blessing. I am SO not returning to my previous work. I now declare that my geek days are over:)

If I get more details about my surgery I’ll post them before next week, especially if I find out the balloon colour as I know you’re all dying to know.

Purple would be nice yes?

Falling down with the roller coaster

Things have just taken a bit of a dive bomb this week unfortunately. This is a quick update to fill you in. I’m sorry to those I didn’t contact personally yesterday. As you can imagine, it’s difficult to be on the phone (especially when you have a hearing impairment like me!!!) making individual calls. Just be assured that it’s not that it’s not my preference. I have hundreds of relatives (literally) and that’s without friends. I LOVE YOU ALL xxxx So I hope you’re OK with reading my update here. If not… well… erm… too bad to sad? I’m harsh but you know it’s my humour.

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Last week when I went to have chemo and saw the oncologist she could feel and measure the breast lump. This seemed a little odd given that it hadn’t been ‘felt’ for 2 months by either of us. If it wasn’t for the ultrasound we could have decided it had disappeared.

Over the course of the next week it became sore like it used to be and by Tuesday this week I could grasp it in two fingers. To add to it, I can feel two more sore lumps nearby. So I phoned the clinic expecting the usual ‘it’s just normal don’t worry’. They made an appointment to see the surgeon for the next day (yesterday). I taught year 10 at Luther College as part of my Artist in Residence role in the morning which distracted me very nicely!

The surgeon felt the lump and very quickly said ‘yes it’s growing back’. She thinks one of the other lumps is a cyst but is a bit dubious about the other. I don’t have all the answers… because I forgot to ask the questions but hopefully I can fill in the gaps over the next few days. Here is what I know right now (for those who like bullet points ha ha).

  • The tumour isn’t responding to the current chemo and because it’s a very aggressive cancer type it is growing back as rapidly as it shrunk
  • I MAY stop the chemo (oh please!!!) but I don’t know for sure until the surgeon speaks to my oncologist
  • I will have a biopsy on the 4th of Sept of the other two lumps
  • If the other 2 lumps have cancer cells I will need to have a mastectomy
  • I am booked in for a lumpectomy on the 10th of Sep and if the biopsy is positive they will do a mastectomy instead (with full breast reconstruction at the same time)
  • I will find out if it’s a lumpectomy or a mastectomy on the 8th when the biopsy results are analysed and my doctors have had a meeting about it
  • I will have all lymph nodes removed because some are swollen (need to query this today when I phone them)
  • I need to see a plastic surgeon about the reconstruction at some point but I can’t imagine how that will fit in between the 8th and the 10th
  • I don’t know what this means for the clinical trial. Perhaps I’ll be kicked off it. Not the first time I’ve been kicked out of something.

So that’s about as much as I can tell you right now except that I’m feeling OK and not daunted at all. I’m always happy when there is action. It’s when I get patted on the head and told not to worry that I worry.

In reflection

You may feel (like many do) that perhaps I should have had it removed in the first place. This is a total fallacy, especially for my type of breast cancer (triple negative breast cancer) and given that it is so aggressive. Remembering that I had a CLEAR breast scan in October 2013 and 3 months later I had a golf ball sized cancer growth. If I had had it removed prior to chemo, I would have had chemo delayed for a couple of months while I recovered. In the meantime, any floating cancer cells in my system could have established themselves in my body. Once that happens it is incurable (with breast cancer, secondary cancer can’t be cured). AINT NOBODY GOT TIME FOR DAT!!!! Chemo killed all those little suckers and now I’m just left with the tumour to deal with.

But now… let’s get that sucker outta there!!!

I’ll update you when I get the next saga of news so watch this space. As always I appreciate your prayers and interest very much.

 

Don’t you love the roller coaster?

Have you ever felt like you’re on a roller coaster? This 3 weekly chemo sure feels like it. I seem to have one week at the bottom and two weeks climbing back up to the top. It reminds me of one of my favourite movie scenes. Watch the clip it’s only short. 

Would I prefer to be on a roundabout? Would I appreciate my ‘good days’ if I was? Probably not… but it’s tempting to say STOP I WANT TO GET OFF! 

Don’t get me wrong, I’m not complaining. Last week I was a LOT better than the episode before. I still had stabbing pains in the stomach from the legendary ‘chemo irritated stomach ulcer’, nausea and brain fog galore. The dexamethasone keeps me awake all night so I’m tired all day. I can’t remember anything from the day before (serious!!!!). BUT this is a whole lot better than the last dose and by the weekend I was pretty good. So I’ve now got the knack of juggling the drugs and keeping my week free of appointments. I also know not to attempt to drive the car. That leaves me 2 weeks of party time. Well… in my own little ‘foggy party girl’ way. Back to running on the treadmill tomorrow:)

Splinter fella

If you think I tease my husband too much… then you don’t know him or the MFB. They don’t know the meaning of ‘enough’. The MOTH had 2 weeks off with his splinter injury and was dreading going back to work because he knew what would happen. Those guys are the masters of teasing. Not that the MOTH doesn’t love every minute of it of course. Attention is attention after all!

He arrived at the Firestation, with his little black plastic finger cover that the hand specialist told him he had to wear over his finger. Prior to that day he wore that cover for about 4 hours total so this was all a show for the guys at the #15 Firestation.

He walked in the door and discovered all the walls and windows in the station covered in signs such as these (below). His chair had a ‘splinter free zone’ sign on it. He arrived in the mess room for breakfast to find that all of the firemen were wearing black tape over their middle finger in sympathy.10609127_10152376518354506_1913811945_n

THEN… the ‘peer support’ team from headquarters called him to ask if he needed any support for his splinter. Obviously ‘somebody’ put them up to it. His mate Graham was limping and explained that he had a splinter in his foot. So on and so forth… all day… all week… until…

Will he ever hear the end of it? I think not. Meanwhile… he keeps giving everyone ‘The bird’ and thinks he can get away with it if he says ‘I’ve got a splinter’ at the same time.

What about MY finger?

My finger nails are doing weird things. I have a massive dent in one fingernail and a lump where the nail is buckling under my skin. Any sympathy out there? No. My doctor said it was normal and my nail will probably fall off. OK. I’ll just deal with it. After all, it isn’t a splinter is it?

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In all fairness… Col has been such a honey during my time of illness I don’t know what I would do without him. He is a tower of strength and support and our relationship has grown so much closer through the storm. I can’t thank him enough and wish that everybody had a best buddy to be married to like I have.  It’s times like this that I really appreciate him. Love you honey!

Just so you know, sometimes I’m pretty grumpy too. I know that’s hard to imagine ha ha.

Chemo information

I received an email from Healthline.com this week asking me if I would put a link to their chemo information and the 19 common side effects.  So there it is! I’m doing my thing for Healthline (whoever they are). They believe that people need to be aware. Hmm. I am in two minds. I think it’s pretty scary to read but I also like it’s honesty. So much of the information for patients is sugar coated. I’ll let you decide.

Wow I’m glad I didn’t read that before I started. I have almost all of those side effects but it seems worse when you read them than when you have them. Strange but true.

Living life with perspective

1a560329b6ffb045b286c8521d85c720-1I’m all ready with my armour on to tackle the next chemo sucker due on the 19th. In many respects I’m not getting as many symptoms on this chemo as with Paclitaxol but with my current stomach problems the next and final 3 hits are going to be a challenge. I’m so glad they are only 3 weekly now and that I get time to recover, unlike before when chemo was every week. I feel much better now and even drove the car! Whee! I am concerned about my concentration on the road. My brain is getting worse and worse. There is so much fog in there I feel like I need a personal assistant. If you see me on the road clear outta the way.

I’m soooo excited about this weekend. All 8 of us (kids and partners) are going away for the weekend and staying in a big house. A house full of noisy extroverts and a boisterous staffy pup named Angus is just what I need ha ha. Marley is staying at home where he will remain calm and not bark all weekend. Hmmm. We are so blessed to have AMAZING next door neighbours who are also very close friends. We only have one house adjoining ours so it’s just as well they are so tolerant of ‘Sir Barkalot’.

This little chapter of my life isn’t all about fighting cancer. It may sound odd but I have gained more positives from having cancer than negatives and my purpose in life feels crystal clear. It’s not about bucket lists and last wishes or a feeling like I am going to die… it’s just about prioritising what’s important. That’s why I am excited about the weekend. Spending time with my amazing family and their partners is going to be wonderful! I just love how they have developed as adults and that they all get along so well. They spend time together even when Col and I are not there which warms my heart. In fact, it was one of the partners who organised the weekend so it’s nice to know they aren’t dragging their heels to come. Us mothers just love harmony in the nest:)

Oh and I managed to run 3k on the treadmill yesterday without throwing up my cookies. The gym team are very grateful I’m sure he he.

 

‘Maroond-in-dah’ hospital

Here’s a little update for those who aren’t on Facebook…

On Friday, after 3 days being flat out on the bed/couch with nausea and stabbing pain in the stomach I relented and went to casualty at Maroondah where I was ‘marooned’ for the day. The staff were really helpful in casualty and sent me straight to a room of my own so I didn’t have to sit in the waiting room or lie in a cubicle for which I’m glad of.

After many uncomfortable procedures, xrays and a plethora of drugs and fluid through the IV they sent me home 7 hours later. Those little anti-nausea wafer tablets which cost $8 each are AMAZING!! I had two so that was an expensive dose he he. As for the stabbing pains… they think I have an ulcer. I had xrays to see if there was a perforation (which there wasn’t) but they didn’t want to put a camera down there since my stomach lining is very frail right now. So I’m taking double Somac which isn’t taking the pain away entirely but it’s manageable. I cant manage anything remotely hot (temperature) and nothing spicy… except the MOTH:) There’s no bleeding so that’s gotta be a good thing!

The nausea is manageable with Maxolon now, although it makes me drowsy unfortunately, but it’s all part of the balancing act. I’m making myself stand upright so I don’t become a couch potato but once I’m off the Maxolon it will be easier. They have taken me off Voltaren which I take for arthritis as it irritates my stomach. Sigh. Now I’m going to have to find another drug of preference. I am beginning to look like a drug addicted person right now since I’ve had 5 cannula insertions into my wrists this week which all have huge bruises.

If this is what I am to expect for the week after this chemo I’m ready for it next time with all my wafers and drugs!! So if you want to rob me of the most valuable thing in the house right now it’s wafer tablets. $50 for 6 of the little buddies. I only have 6 so don’t get too excited but my friend who just finished chemo is going to slip me some later in the week. YAY! I’m like a little squirrel.

Three more doses of chemo to go (one every 3 weeks). Roll on October!!! The days seem to float past me in my world of fog. I have no doubt I will barely remember most of this. So glad it’s all here on the blog to refresh my memory. Not!

Eyelash count= 3

Hair washing day at the Wood Hood

Hair washing day at the Wood Hood

A funny thing happened on the way to a party

Jen2For some weird reason, my hair all fell out and then began growing back again. For a while I shaved it off but then I left it. It’s white and soft like baby hair and now about 2cm long. It’s very sparse so you can still see my scalp very easily but even so… it’s hair. The even weirder thing is that everywhere else my hair has gone and isn’t growing back. I haven’t shaved my legs for months. Yay for that. I’ve alway done things differently to everyone else ha ha.

I usually spend 3.5 seconds doing my makeup but my personal assistant (daughter) has kindly made it her duty to prepare me for the public eye when it comes to special events.

In this case it was an engagement party. As you can see (above), she did a pretty good job of the eyebrows, although according to her (and me) one eye brow is just plain odd. It’s quite challenging even for her to get it right. Today Sophie glued fake eyelashes on me even though I’m not supposed to wear them due to the particularly frail state my skin is in from the chemo. Then came the wig. Voila!

So off I went to the party, trying desperately not to blink furiously and/or to wipe my eyebrows or eyeliner off while navigating the way in the car for the MOTH. My wig was in my eye so I flicked it furiously out of the way so I could see the GPS instructions. Oops. I soon discovered that my eye lashes were glued to my wig. Now I had one corner of the eyelash hanging off and no idea how to fix it.

A quick SMS to Sophie resolved it. It all seems so simple when she says it like that…

Screenshot 26:07:2014 8:11 pm-3

 

 

I’ve been microchipped

Last week we stayed at Rosebud for a break and for 2 of the days I had an art retreat by myself. On the Tuesday, however, we had to drive back to Maroondah so I could have a titanium chip put into the tumour (providing they could find it). After much hoo ha with the ultrasound, they found the tumour and eventually put the chip into the middle of it. Now when they do surgery, they will be able to find the area to remove.

I can’t run away now because they have a remote control to bring me back to base. Just kidding.

If you want to read about the tagging there is a short article here: http://www.auntminnie.com/index.aspx?sec=ser&sub=def&pag=dis&ItemID=101026

The radiographer also found two swollen lymph nodes under the arm and in the breast. I’ll find out more on Tuesday when I start the new chemo treatment and see the doctor. Hopefully I’ll discover the size of the tumour (which is too small to be ‘felt’) and what’s going on with the lymph nodes. Hopefully the nodes are just another weird thing to add to my list.

I’ve been feeling pretty good this last week. Running on the treadmill at the Rosebud resort and with running group today and not needing nanna naps for the past 5 days.  I created so much artwork in Rosebud I almost couldn’t find my way to the bed at night for the mess. Loving it!

Swinburne investigation

My lovely friend Elaine is pioneering an investigation into the number of women from Swinburne who have or who have had breast cancer… possibly any cancer at all. It isn’t a witch hunt, but an investigation to see if there are links. Elaine has medical background and has made contact with the right people, composed documents and permission forms etc. So if anyone out there would like information please let me know. Elaine is doing this out of the goodness of her heart and I just want to thank her on behalf of all of us who are too distracted to do it ourselves. Bless her cotton socks!