Monday After Thanksgiving

The Monday after Thanksgiving: The “Netherlands” enjoyed their 4 day break form the “radiation riviera”, but we are all back at it again today. The mouth and throat sores are more manageable now since I have something the doctors call “magic mouthwash”. It numbs your entire mouth and throat, which isn’t a great feeling either, but MUCH better than the alternative!

The lesion on my eyeball is troubling to the doctors, so I am being sent over to an eye doctor. Maybe he has “magic eyewash”. This thing on my eye does not hurt, but it feels like there is something in your eye that should not be there, which is, of course, the case.

They also aren’t pleased that my white blood cell count is down. After much mumbling together, they produced a shot that is supposed to tell my bone marrow to make more white blood cells (their words, not mine). I resisted the urge to suggest that perhaps they could just open my mouth and shout down loudly at my bone marrow. They said the shot might make my bones hurt. What? What does that feel like? I suppose if it happens, which it hasn’t, I’ll recognize it, having been forewarned.  But still……

The doctors were also cross because I lost 8 lbs since last Wednesday. Talk about sucking the joy out of every little thing! That was the one tiny little spark of light and happiness in this whole dark cloud and they fussed about it? What is wrong with you silly people? On and off for over 50 years you have peered over your collective glasses at me and suggested I think about losing weight.   Now here I do it, obedient little me, and you gripe about it? ( I wanted to say that, but I didn’t – don’t upset people  holding needles is my motto).  But come on – allow me a little joy here – if I really get skinny (yeah, right!) then you can threaten me with milkshakes and IV feeding tubes, but for now, BACK OFF.

Guinea Pig Hair

Guinea pig hair?  As most of you know, when I got my diagnosis and treatment plan of chemo and radiation, I went ahead and cut all my hair off very short. I did that for two reasons: first, if I was going to maybe lose my hair, I did not want to go through all of the drama of worrying about it, dreading it, etc.  Second, I wanted to send cancer a message – a kick in ITS butt, so to speak.  (Let’s do keep the butt jokes to a minimum, shall we?)

This short haircut is okay and very easy to manage, or so I thought, but when Carol Harper cut my hair she was amazed by the wacky growth patterns on my head – my hair grows every which way, apparently, and the back looks like a series of hurricanes lined up between the west coast of Africa and the Gulf of Mexico during hurricane season. When Cindy arrived from New York she looked at the top of my hair and said “Oh, you have guinea pig hair up on top”. I raced to the bathroom and with the help of several mirrors and some gymnastic moves I was able to confirm that the hair on the top of my head does indeed grow towards the center, like it does on the back of a guinea pig! GREAT. The result is a ridge of hair down the middle that sticks up, like the backbone of an Australian ridgeback or something. Even better. I have been snipping at it with scissors as it grows out because Carol Harper isn’t around, and I  do not want to have a mohawk up there – even a short one!

Of course, my hair has not fallen out yet – right.  I wonder what is next?

Thanksgiving

Thanksgiving will never be the same holiday for me again. I always (BC) liked Thanksgiving. I considered it a “Day of Thanks” of course, and at my house it has always been about family and friends, wonderful cooking projects, and football ( the Texas Longhorns always play on Thanksgiving). Having taught history for several years, I always got into the pilgrims and Indians thing. I also considered it a kickoff for Christmas, so as soon as Thanksgiving dishes were done, out came boxes of Christmas decorations. I MIGHT be a bit of an “over-decorator” at Christmas, but I do love it!

This year, of course, is very different; this year I felt really serious gratitude.  Not that fleeting, general gratitude, and I felt it in my heart, not in my head, as usual. I don’t know if that makes sense to you, but those of you who “live in your head” will know what I mean. I got so many lovely messages from from friends and family and I started my morning with them. My friend, Terri, sent me a short video on life that was so beautiful that it moved me to tears (good ones). This year my daughter-in-law, Libby, was the lead cook with Emily and Cindy in supporting roles and she did an awesome job! This was her first Thanksgiving as the lead cook and I couldn’t eat much because of the mouth sores, but the food was all great.

This year it was not about the food for me anyway – it was about being with family and being grateful for so much right now; my family, my friends, the people at the cancer center, the treatments themselves, being alive, and a lot more. So I hope I never again get caught up in the “doing” that was Thanksgiving and will always celebrate it with “being” reverence and gratitude as it’s own day, not the gateway to Christmas.

Thanks guys.

Love, Susan

Day Six of Chemo & Radiation

Lucrezia and I parted company yesterday afternoon.  I won’t get her back for a few weeks, however the effects of her will continue to be with me – hopefully she zapped a bunch of cancer cells – which would make  the side effects ALMOST tolerable! Yes, it is that time, side effects are beginning to appear.  The Netherlands “fired a shot” over my bow, so to speak, and informed me that they had had quite enough of all this bright light and could they please be left alone ……. it was with great gentleness and sympathy (it would not do to enrage them any more) that I had to tell them that wasn’t going to be possible.  They did not seem to take the news well.

As for the side effects, you really do not want to know.  Let’s just say I have been issued a whoopie cushion and a bottle of odd smelling liquid which is to numb the inside of my mouth and throat. I was asked by a nurse if I still had any taste buds (that does not seem to bode well for what may be coming).

The good news is that my daughter, Cindy, got here yesterday from New York – she will be helping me for the next several weeks, and she is doing awesome things for me already – she cracked everyone up by informing me that she thought I looked “rad” – she was referring to my hair, not realizing she had made a radiation joke – I told her that I was, indeed, “rad” and she might want to stand back a bit!

Love to everyone,

Susan

Day Three of Chemo and Radiation

This is day three of chemo and radiation – so far all is well, but my sleep patterns are a little wacky -the first two days I couldn’t sleep at all – I was up in the middle of the night wishing for a 24 hour Home Depot so I could go buy a gallon of paint and paint the kitchen. The flaw in that plan is that I am in a hotel – I wonder how long it would take them to figure out the kitchen is a different color? hmmmm………

Today, I feel like I could sleep all day, so who knows what tomorrow will be like? I have decided that any day that something does not fall out or off is a good day – no unreasonable expectations for this roller coaster ride! The staff in the radiation place has started wearing masks around me – this is slightly disconcerting – are they protecting themselves from me, or are they protecting me from them? I must remember to ask. Thank you to everyone for sending picture and emails to me and posting comments – I can’t always answer each one personally, but it really means so much to read them – it always gives me great strength, so please keep posting even if I don’t get back to you right away. You know, the journey of healing is sometimes a transformation ( not too get too serious on you) and I know now that I will never ever again take for granted the power of family and friends and the power of love.

Susan

Lucrezia Borgia

Monday morning came quicker than I had hoped – in the very early morning it was snowing here in Denver and the wind was blowing – very appropriate for my mood as we went off to get my “port” installed. I had never seen one, so I did not know what to expect – but my first thought was that it was BIG – like the end of a stethoscope – maybe a little smaller, but not much and lumpy and attached to it was quite a bit of tubing…..hmmmmmm……when they said that all of that would be buried in my chest so I would not see it (that was supposed to make me feel better, I think) I outwardly smiled and nodded, but what I really wanted to do was RUN, while shouting over my shoulder “no way are you stuffing all of that under my skin – are you crazy?”

At this point I had to call on some grace – the grace of gratitude, the grace of fortitude, and the grace of reverence for life and thank the cosmos for making this stuff available to me, but it was not easy. The actual installation was not comfortable but was ok, and I got to choose the music in the operating room since I had to be awake for this, so we all listened to Jimmy Buffett, of course. which helped alot – I think the idea of the port was worse than actually having it – and I seemed to be the only one bothered by the fact that they installed my port on my starboard side – oh well……that is not the only oxymoron I am running into with all of this!

Yesterday was “chemo school” and radiation practice (chemo school was about even more horrible side effects that could happen and what to do if they occur – I took copious notes just in case) and then today was my first day of chemo and radiation. I received my infusion pump that I carry around for the next few days that dispenses chemo 24/7 – I am naming it Lucrezia Borgia, in honor of the famous poisoner that poisoned a bunch of her husbands, I think, but we are not poisoning husbands – we are poisoning rotten little cancer cells!

Lucretia and I are getting to know each other today – we have had a few issues, such as me forgetting her and going off without her, but that is more uncomfortable for me than her so I am learning quickly. When I got back from the treatment center I had emails from Terri House showing lots of Rotarians at lunch today holding up Netherland flags saying “love Susan” – I can’t describe how wonderful it was to see those right when I got home – it was so funny and so uplifting – You guys are really amazing – I had not realized how down I was until I saw those pictures, and I did a complete turnaround – I feel back on top of this again – I will never be able to thank you enough for those pictures and the timing of them – and whoever had that idea, a special thank you to you.

Love,

Susan

Pics

A few Pics from the period of the first few posts.  The night I got all the news (while I’m singing “If I were a Rich Man” with Andy W.), a visit to the Brown Palace, and some shots of my new haircut in the Brown Palace.

Poleaxed

We are in Denver now, preparing to begin treatment this week.  Yesterday’s meetings with the lead oncologist, who is a very knowledgeable, kind, and gentle man, and the radiological oncologist, who is a very bright, efficient, and no-nonsense type of woman (which I appreciate), had a good news/bad news theme.  The good news, which is the best news of all, is that this treatment has a 70-80% cure rate–awesome!  The radiation doctor had at the job of telling me in gruesome detail some of the short term and long term side affects of the treatment, though (the bad news).  She was very thorough and graphic and when she was done with me I felt poleaxed– a good southern term that describes a state of extreme shock that makes you appear stunned and often involves crossed eyes for an hour or more.  Poleaxed people usually need to be led around until they recover!  If this ever happens to you, I recommend a cosmopolitan in a very classy bar–it did wonders for me.

So Monday morning I get a “port” put in for chemo.  It is something put under the skin, under my clavicle, that they can plug the chemo pump in and out of so I don’t have to have an IV 24/7.  The pump is something I will carry around and I hear it is the size of a video tape.  I can’t quite picture this, so I’ll know more on Monday, I guess.  Chemo is two weeks out of the six continual weeks of radiation, spaced out.  Week 1 and week 3 or 4, but sometimes you need a break because those grisly side affects get to be too much to handle.  But a break just delays things.  I also got 3 tattoos yesterday– guides for the boundaries of the radiation area, and that really hurt.  I don’t know how these kids can stand that pain for a big tattoo.  OUCH!  But now I am a little more “cool”, I suppose, although these tattoos will NOT be shown to anyone I know– only 15 or 20 strangers who work in the radiology department will see them.

One final note:  Just when I thought I was done, a radiation tech came in with a camera to take pictures of the radiation area on me.  At first I thought it was a joke–if I hadn’t been poleaxed I would have broken her wrist, if necessary, to get the camera away from her.  As it was, I could only say two things to her.  First, “you must be kidding…” and second, “I better not see those on the internet.”

I can hardly wait until Monday.

More later.

Love,

Susan

Young Ladies of Quality….

This is not really day one – day one was the day that the doctor said I had a squamous cell carcinoma – Oct 19 – I was sad and then I got really angry – and then I got scared – you name it, I felt it. But I think of day one now as yesterday. Me and Farah Faucett – I think the people who are identified as “at risk”  are girls who went to UT and had big frosted hair in the late 60s, and gay men. Oh well – being a southern young lady of quality – having “unmentionable cancer” is cancer that I prefer to think of as cancer of the “nether regions” – those private areas – my son , Will, pointed out that that type of cancer does not have its own ribbon – it is not an “acceptable” cancer, like breast cancer – I mean what color would the ribbon be? brown? No. So, cancer of the “nether areas” should use the colors of the flag of the Netherlands – so we have ordered lapel pins of the Netherland flag to wear – then people can ask, how are your “Netherlands” and I can answer appropriately or not, but it is not quite so awfully tacky –  I have been told that the next step for me is chemo and radiation together everyday for 4 weeks  but I will let you know when I know for sure – but I think head scarves and wigs are in my future. Thank you for your support – Love, Susan