Melanie's Updates

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"Friends_of_Melanie"

From: Melanie Woiwode
Sent: Friday, July 09, 2004 9:44 AM
Subject: [friends_of_melanie] Whew! What a week.....

Hello hello,

Thank you to those of you that have been checking in with phone
calls, emails, cards etc.  There have been quite a few - so many many
thanks!

So, to cut to the chase, the medical stuff....we'll get that out of
the way first.

Yes, Monday, I had my radio frequency ablation procedure and it was a
success. Indeed. So, that is awesome news. I really don't think we
could have asked for a better outcome.  Dr Gillams was pleased.  She
didn't blast all of the tumors, but then, again, she never intended
to. It's just too hard on the patient, and too hard on the liver. 
She did get over 50% and will schedule another RFA to get the rest. 
Excellent news in that there are no new tumors and the ones that
were/are there are about the same size - so yahoo to that news! 
After the procedure when I was in the recovery area...one of the
nurses looking after me (Graham) who was hilarious told me that they
gave me morphine.  UGH!  NOT good for Ms Mel.  I do NOT like that
stuff....I sure wish I did!  So, let's just say I struggled quite a
bit on Monday evening.  But, I had my wonderful friends Karmele and
Lori looking after me.  Wow, talk about TLC!  Lori was rubbing my
back and holding my hand.  I basically couldn't speak.  And, for me,
well, I have the gift of the gab!  I think by 10-10:30, I was doing a
bit better.  Then, on Tues, I was allowed to escape :)  No, my friend
Karmele escorted me home.  I did have a fever, but that was normal. 
I had fluy/achy symptoms, but again, that was to be expected. 

Then, Wed am, I had a hospital appt at Prof Dalgleish's clinic that
was already scheduled for me.  Turns out that the ever lovely Mr
Mudan was there as well.  So, we had a bit of a chat and then Prof
Dalgleish came in.  We talked about my immunotherapy treatment.  Long
story short, (which I can never do) I am going to be working with
this German doctor - Dr Nesselhut.  He is going to be in London next
Friday and I most likely will be able to meet with him.  So, at that
stage, I will know more....where I will be treated, where, etc.  I
told Prof that I am more than capable of going to Germany, not a
problem.  So, fingers crossed I will get a meeting next Friday.  Hope
Prof will arrange that for me - I think he will.  Now, this is the
second time I have met with Professor Dalgleish, I have to say, he is
quite a pleasant man. I will enjoy working with him.  Meanwhile, we
also talked about IL2.  And, before I get into that....read more
about what IL2 is: 
http://www.cancerbacup.org.uk/Treatments/Biologicaltherapies/Interleuk
in-2

So, I started the IL2 treatment on Wed.  I was injected with .17ml of
this protein.  A full dose is .33ml.  I felt okay on Wed.  But, if
you read the link, you will see that there are definite side
effects.  Let me tell you, I felt those BIG BIG time on Thurs nite. 
So, yesterday evening, I had a full dose - .33ml. My lovely flat
mate, Liz, administered it.  It's stored in the fridge in a syringe. 
I felt fine....but then about 2 1/2 hours later - WHAM!  Let's just
say that I hardly slept and had some serious serious flu-like
symptoms.  I was shaking like a leaf for quite some time and was
burning up at the same time.  It's all a bit hard to explain.  So, I
am exhausted today.  I did call Prof and I told him about my
experience and he thinks I reacted as violently as I did as I was
still dealing with the effects of radio frequency ablation.  He told
me I don't have to take any today.  So, how it works.....I get 3
daily doses in a row and then take a week off and then repeat that
again.  So, I go back to St George's on 21 July for more lovely IL2 -
NOT.  Well, I think if I can manage the doses, I will be fine.

So, that is the lovely medical stuff...which this week, my life was
consumed by my health.  I spent a bit of time in the office - not
much.  Of course, it was such a delight to see my colleages (Ben and
Matt)  Wow, they totally lifted my spirits BIG time.  So, grateful
for them. 

I was in Germany this past weekend with my friends Phil and Barb and
their darling 2 year old Emilie.  That was a fun weekend.  Emilie is
a doll, lots of fun.  We went to a typical German festival in that
the only things available were food and alcohol!  So, typical!  It
was a lot of fun.  We also went to a wine region which was just
beautiful.  They showed me where they got married - lovely! 

I think I mentioned last time that I had quite a few visitors in
June.  I forgot to mention that my dear dear friends, Lorelei and Don
stayed with me.  We had such a blast!  It was AWESOME to have them
around during all of this.  There were here the 2nd week of June.  I
got the photos back yesterday from when they were here.....they are
great!  They look great and are doing well.  They were doing some
traveling in Italy and hit London (to see me :)) on the way back to
Seattle.

Well, I think I better quit this novel.  On the active front....well,
I was on a road bike 2 weeks ago for the 1st time in about 2 years! 
It was great!  I loved it.  We cycled about 15-17 miles in some easy
going country lanes.  The weather was rubbish, but oh well.  Nice
looking scenery that is for sure....we cycled in Northern London. 

Thanks much for all of the warm, thoughtful wishes and positive
energy.

Love,
Melanie

*************************************************************

Sent: Friday, February 27, 2004 5:00 AM
Subject: [friends_of_melanie] Letter from Mr Mudan!!

Hello again,

I didn't think I would send out a note so soon.....but when the post
came this morning, I was super surprised to see a letter from Mr
Mudan himself!  I literally broke down (in a good way) as I am just
so thrilled to have him as my main surgeon.  He is the bomb!!  I am
not sure he would appreciate/understand that term, but so be it.  So,
I thought I would just type in his letter. 

Here it is:

Dear Ms Woiwode

It was a pleasure to meet you and your aunts at my Surgical Oncology
Clinic of 6th February 2004.  Thank you for letting me know that you
have written a note of thanks to Ms Jahangiri.  (She is the cardiac
surgeon).  It was wonderful to have her there at the operation and
certainly we could not have achieved what we did without the help of
her and her team.

The key points from today were that the inferior resection margin
shows that at the microscopic level the resection is very close. 
This begs the question of whether there may still be some tumour
cells on the other side of where we divided the inferior vena cava,
that is in the vena cava that still remains in your pelvis.

I would hope that this is unlikely, but nonetheless it is possible. 
I think two options could be deployed.  We could either wait and see
if there are any changes on CT suggesting that there was tumour re-
growth at the lower end of the graft and then take some action to
remove that part of the remaining inferior cava.  However, this
commits us to a policy of regular surveillance and will induce a
degree of anxiety in your mind and mine.  Moreover, in the event that
you wish to travel or reside in another country it would mean setting
up an elaborate programme of surveillance with appropriate surgeons
who may or may not be willing to comply with taking over your care.

I understand from Professor Thompson that the problem with the
inferior vena cava graft which he so skillfully placed, will
eventually thrombose as is the way with these grafts. 

On balance, my feeling would be that we allow some time to pass for
you to recover from the operation and for the tissues inside the
abdomen to heal and settle.  This will also allow us some time for
collateral circulation to build.  Then I propose elective resection
of the remaining inferior vena cava.  This may require some fancy
vascular grafting, but I am sure that this is well within the
abilities of the vascular surgeons and do not anticipate that they
will have any problems in complying.

I will talk with Professor Thompson as to what sort of time he would
like to leave for further collateral circulation to become
established, but I would have thought that we should re-operate
towards the end of 2004.

In any event, I would like to see you again with some further imaging
in April.

Yours sincerely,

******************************************************************

So, there you have it! 

On a side note, I swam yesterday (2200 meters) and today (2000
meters) and am thinking Donner Lake anyone??  HA!  Just a joke for
the swimmers on this list.  Yesterday, I did swim in an outdoor pool.
It was awesome to see the steam rising from the pool....it was
probably about 38-40 degrees outside. 

Well, better get cracking as I am at work.

Ciao,
Melanie

Sent: Monday, January 12, 2004 6:41 AM

Subject: My visit with Mr Mudan

Tom - hmmm.....you have that conference this week....and Dara you leave today for London! Well, I guess this will get out some time this week. Dara - you can show me how to post updates, although, 6+ years in hi- tech....hmm, you would think I could do this on my own!

******************************************************

Hello hello!

Just wanted to update you all on my visit with Mr Muday this past Friday - 9 Jan. To sum it up: I think I am still beaming from that appt. It was a most positive one.

The meeting started on a good note when Mr Mudan put his arm around me and said "We're friends". I thought that was sweet.

Basically, Mr Mudan was super pleased with me and the results of his handiwork :) Theresa was with me - awesome to have her there and meet some of the team. I asked Mr Mudan if there were things I should or shouldn't do and he replied: "You can do whatever you want!" WHAT?!! He said I could go skiing! I asked if I could swim and he said "Sure". Of course, one would deduct that if I can go skiing, I must surely be able to swim. I was "over the moon" to use a phrase from my colleague, Paul.

Mr Mudan did say that it is possible that my graft may be removed at some point, but couldn't give any specifics. I will be closely monitored with MRIs every 3 months. I should be having a CT scan in the next 4 weeks or so. I do need to wear my ever sexy stockings indefinitely.....yes, that means all the time for a very very long time. This is to help with the circulation. But, hey, I can easily handle that. My only drug now is Warfarin and I am not sure yet how long I will need to be on this.

So, since I can do whatever I want....I have signed up for a moutain climbing class. NOT! But, I have been on public transport a few times, been to the theatre and going to Heathrow tomorrow to greet Dara! I am excited she is coming.

Theresa left this morning. She cooked up a storm! Wow, we had some fantastic meals and I have more to look forward to as she prepared ones that I could eat this week. How nice was that! Super sweet.

As for work...well, probably Marchish is when I will return.

Oh - I am going to Eastern Germany the end of Jan/beginning of Feb with my aunts (my mom's younger sisters). That is a done deal.....well, hopefully I don't have my CT scan scheduled during that time. I think it will be a very special trip to take with my mom's siblings as her b-day is 4 Feb.

I hope everyone is well and man, I still continue to get gifts and cards! LOVE it! Many many thanks!

Love,

Melanie

From: Melanie Woiwode [mailto:mbwoiwode@yahoo.com]

Sent: Wednesday, January 07, 2004 6:52 AM

Hello you 2,

If you could please send to the yahoo group, that would be swell.  One of these days, I suppose I should log-on and see how many people are rooting for me!
******************************************************

Greetings again,

So, last time I wrote, I was waiting patiently, or rather NOT so patiently for my ultrasound.  Well, it finally happened somewhere between 4:30 and 5:00.  No biggee that I arrived at the hospital at 9:30 that morning.  Oh well....
Anyway, everything went just fine.  There was no build-up of fluid around my graft.

I got the official okay to leave the hospital.  One of my surgeons (Mr Jones) was "go go go"!  I loved that response.  I even told him of my plans to travel to Germany with my aunts in early Feb and he gave me the green light IF I wear my stockings.  Sure, no problemo!  We had a bit of a laugh.  In fact, I have to say that I have a solid relationship with all of my surgeons, house officers and registrars.  We all get along very well....there are lots of laughs and smiles which is fantastic. 

So, that is that.  I have an appt with Mr Mudan this Friday.  I have not seen him since a week after my procedure, although, he did pop over to see me on Monday.  I was out at the internet cafe.  I imagine this is a routine check-up and perhaps I will be told of follow-up scans, tests etc. 

Sue left on Tues.  Again, super duper wonderful to have her with me.  She is a sweetheart!  Theresa arrives manana and am looking forward to that.  She said she is bringing lots of recipes - fine by me :)

As I have mentioned before, I am truly touched by all of the shower/bath treats, lotions and potions, CDs, photos, flowers, pajamas, pair of slippers, blankets, lounge wear, books, cold weather attire, emails, cards, phone calls, etc etc.....I am so so grateful to have such a supportive network.  THANK YOU!

Nora continues to call me every day which is just the best.  I think back at how she was by my side 24/7.  Seriously, we were never apart.  She is an angel.  She took SUCH EXCELLENT care of me. Having her medical knowledge around was incredible.....you don't even know.

And, also, when I think about how Tom was there for me when I was NOT fun to be around...oh boy oh boy!  From rubbing my back when I was not doing so well, to brushing my hair, to the countless card games, to bringing me water, to adjusting my pillows.... Man, I couldn't do anything on my own those first 4-5 days post surgery!  And, he was there.  I am so thankful for him and Nori and Nettie!

That's about it from here.  It's a gray cloudy day in London.  Oh well, I spent most of my time indoors
anyway.

I will be in touch soon,

Lots of love,
Melanie

From: Melanie Woiwode [mailto:mbwoiwode@yahoo.com]

Subject: My situation

 Hello all-

 Once again, I have some very unfortunate news to share with you all.  Excuse the mass distribution, but  this  is the easiest way to let you all know my current situation.

 Some of you know everything, some of you know nothing, so I think I will just start from the beginning.

 About 6 months ago, I started to notice some swelling in my legs.  This would happen  sporadically.  I went to my GP a few times over the summer and he couldn't figure out what was wrong with me.  The weather was rather hot and thought I was swollen due to the warm sunny days!  NOT - I am from Southern California :)  I did have a few blood tests done.  Anyway, he (Dr Evans) knew that I flew to CA from time to time and I think he actually was quite worried about me.  He thought I may have DVT (deep vein thrombosis).  So, at the end of Sept he referred me to a vascular surgeon - Prof Thompson. 

In England, having the title of Professor is a good thing - trust me.  He is at the top of his level.  When I went to see Prof Thompson, he too couldn't figure out what was wrong w/ me.  I was having a "skinny" day that day and my legs were totally normal.  He did check my abdomen area, and was pressing on my stomach, kidneys, liver etc.  He then referred me to a renal (kidney) specialist and ordered me to get an ultrasound.  I originally had an ultrasound scheduled for 9 Oct, but of course due to the tragedy with my parents, I was not able to have it done.  I had it done on 7 Nov.  The results came back and they were NOT good.  Believe me, when Prof Thompson was going over the ultrasound results with me, I was scared.  He basically said that I have a mass in my abdomen that is 19cm by 10cm.  Get out your ruler - that is HUGE!  He said I need to come in straight away for more tests. 

 That was last week Tues - 11 Nov.  Since then, I have been poked and prodded!  No really, I have had a CT scan, an MRI, plus had a catheter stuck up my femoral vein (it's in your groin) and boy that was fun.  I have had dye inserted into my body 3 times, plus drank this really delicious contrast - NOT! 

 Anyway, here is the latest:

 I have a sarcoma (a type of cancer that affects smooth muscle) tumor that has totally invaded my entire IVC (inferior vena cava - spelling?) from bottom to top. This is your MAJOR blood vessel (vein) that takes deoxygenated blood back up thru your body.  Your aorta takes oxygenated blood down thru your body and the IVC returns deoxygenated blood back up.  Also, this tumor is in my abdomen outside of the IVC.  My IVC is 3-4 times the normal size.  Your IVC naturally goes thru your liver, but at this stage they are not so sure how my liver is being affected.  So far is appears that this tumor has not metastasized (spelling?) into my lungs which is something that could definitely happen. Also, there is no mention of my other organs - stomach, kidneys, pancreas, intestines etc.  Those all appear to be fine.  So, that is good.  But, this is EXTREMELY EXTREMELY rare.  Not only is sarcoma rare, but to have sarcoma attack the IVC in this way is totally bizarre.  My sister (Nora) thinks there are a couple hundred cases in the world up to now.  Lucky for me, I am dealing with a sarcoma expert - one of the few in England.  He (Mr Mudan) is a wonderful man, really!  He is warm, compassionate, very articulate, knowledgeable, etc etc.  Both my sister and I are very confident in him and his team.  Now, sarcoma traditionally does not respond well to chemotherapy.

  So, we are not sure if I will have chemotherapy or not.  The biopsy will tell us what type of sarcoma I have.  It will also tell us if the hepatic veins (that feed off the liver I think?) are infected.  If that is the case, I will need a liver transplant.  Ideally though, I hope to have surgery to remove this.  And, this is a very complicated, risky surgery.  I will have a completely new IVC made partially from other veins in my body and artificial material.  But again I am in excellent hands.  I trust these surgeons which is very important.

  By the way, my biopsy is happening tomorrow - Thurs.  

 I think that is the long and short of it.  I can tell you that having my sister here who is a doctor is just amazing.  I am SO APPRECIATIVE for her.

  I also am VERY grateful to you all.  I know this is a TOTAL shock to some of you.  Believe me, this is not easy to digest.  Very hard to take all of this in especially due to the recent tragedy with my parents.  I would LOVE to have my mom here. 

  But, I have to have a positive attitude, period.  And, for the most part I do!  We have had some laughs and jokes definitely. 

  For those of you that have phoned and sent flowers and emails - thank you thank you thank you.  Realistically, I will not be able to talk to many of you.  It's just too hard, I am sure you can imagine, or maybe not! 

  Feel free to email/call, but just know that you most likely will not hear back from me. 

  But, there is a website being set up or some sort of communication where you can get updates on me.  I will be emailing my brother your email addresses and he will pass information on how to access this web site.

  I know I am/will be in your thoughts and prayers.

 Love,

 Melanie

For a little more information on what Melanie is facing, - This appears to be a good source.

http://www.ijri.org/articles/archives/2002-12-4/vascular_515.htm

From: lindsey salma <lysalma@yahoo.com>
Reply-To: friends_of_melanie@yahoogroups.com
Care packages for Mel

hi,
I sent a small care package to mel a couple of days ago. it included trader joes trail mix, dried fruit, a couple cans of black beans (she loves them and can't get them in london), lotion & bath gel, pete's coffee, see's lollipops, luna bars, and vacuum-packed yogurt covered pretzels.

I know these are some of things that her mom used to send her.   Pictures are a great idea as are magazines, cds, hot coco etc.

Another thing to keep in mind when your mailing it is to tell the post office that the package is valued under $50 or they will charge mel a customs fee.

From: "Tom Woiwode" <twoiwode@v...>

Date: Fri Nov 21, 2003 8:33 pm

Subject: update from Melly

hi everyone:

wanted to let you know that i spoke with both melanie and nora earlier today...they both sounded a bit tired but generally in good spirits.

melly did have her biopsy taken yesterday though the results aren't back yet. but she and nora met with the surgeon this afternoon. the surgeon has decided that he is going to do the surgery without doing chemo first. nora and i both feel this is the best option. surgery is the only known cure...if he can get in there and get it all out, that is the best chance for a successful outcome.

melanie and nora have their next appt with the surgeon next friday. they both think the surgery will be shortly after that, so it could be the first week in december. there is a slight chance that strategy could change when the biopsy results come back, but for now we're thinking that melly will likely be having her surgery very soon.

mel continues to keep a positive attitude. she amazes me how she can keep so calm and keep her spirits up through all this, but that's mel, always thinking about others and focusing on the positive.

will let you know as further updates come through

best

tom

October 6th 2003

October 7, 2003 - Melanie and Kirsten