Monthly Archives: April 2013

Couchsurfing…

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‘Couchsurfing’ – Travel the world- explore your city and host new friends. Couchsurfing is the world’s largest travel community.

Well now. My couchsurfing has been everything BUT that. I am counting now 16 days, on this rust-terra cotta colored couch. It’s a nice one really. It has big, fluffy back cushions and seats are comfortable. It also sports a Queen size bed. The fabric is micro-suede. Easy to clean, should there be spots.

My day starts early in the morning, since this is when I wake up (thank God.) I take my Levothyroxin and read  another 20 minutes so the pill can work. Then, I go and brew my ONE cup of coffee. It’s nearly a ritual. NO automatic drip pot for me. I boil my water, add 3 scoops of (German mild, non acidic) coffee, a few salt crystals and a ‘breath’ of cocoa. I heat my cup, so the coffee won’t be luke warm when it hits the cup. Just a dash of half and half. That first swallow is sooo good.

See? How much my life has shrunk? Not much happening when you lay on the couch. I bought a big pillow to rest my leg on, which is encased in Ted-hose. Those white stocking that prevent new blood clots from forming.

I can’t stand long, well, not even short time. So, most mornings, I eat Oatmeal or cereal with coconut milk. I try to get dressed, which is not easy to lift that leg to fit into pants. It still seems to weigh 50 lbs. It is still swollen and very tight, and that is the source of the pain.

Now, that I spend those first few minutes on whining, I will also talk about the good things happening. My friends come with food. (I’ve eaten more Kentucky fried chicken the last two weeks, than I have the last 10 years!) But, that’s what my chemo brain wants.

I get home made chicken, potatoe and other soups. I had my favorite Mike come, with family and bring ribs. (Do you all remember that I had NOT eaten meat in nearly 3 years??) Right now, it’s all by the way side. No juicing. Not many salads nor veggies. Chemo has changed my taste buds and I have very little appetite. I still have to have MJ vapors to get ‘hungry’.

I watch T.V. and can’t believe all that mindless crap that’s on. I have read and re-read books. My family calls from Germany and friends and relatives call, so that takes up some time. I watch German T.V. which is some better because it’s not all about killing, blowing up stuff, etc. Sometimes, I wish people had a little more time to spend with me. Like, the length of a movie. But, I am grateful I have so much help and support. My friend Berle is a champion. She cooks and does the vaccuming like a little dynamo. She shops and puts it away and spends time. People do what they can. I am rich beyond measure. My friend Marie came while I was getting chemo and she cleaned house, put fresh, beautiful flowers on the tables and I was so touched and emotional when I came home. My friend Peggie made a late Spaghetti run because my taste buds wouldn’t accept other food.

I never did get Home Health because they don’t ‘help’ . They will give medication, help with bathing but not food or a little cleaning. I only take 1 pill and can bathe, so this is not for me, even though Medicare would pay 100%. But just because I CAN, I won’t squander resources. I thought, they would be the same as in Germany. My dad, brother, cousin all had Home Health and it’s a very efficient, good help with everything. A new, lovely friend is Michelle M. Lives and works in Saudi Arabia. Beautiful, eloquent and so tender hearted. My personal cheerleader.

I want to thank my other friends, who donated money to reduce some of the medical cost. It’s a bit humbling but I so appreciate it.

The other ones are my TEAL sisters. My Ovarian cancer support group. Great ladies. Each batteling her own, tough fight but they’re always there. Supportive. Non Judgmental.

No one has looked at my leg. They say, ‘just keep taking your Warfarin and we’ll see you in 2 weeks.’

I WAS going to go out but a short trip through the kitchen and looking out the window… I see SNOW!! Dang it.  My apricot tree blossoms froze and we’re not sure about the other things I had planted last fall. This is a LONG, cold winter. I am ready to put my toes into some turquoise, mild ocean water. But, that will remain a Fantasy. Bills are coming by the droves and just to tell you: ONE chemo is nearly $5000.00 I have had 9 so far. This is why cancer won’t be ‘cured’ that fast. It is such a money maker.

Just reading this, shows what a boring life it is, right now. I only complained the first week and was very depressed. Mainly, because I did not know what the matter was and have never had anything like that. After that hard week, I decided that I would change my attitude as this would be more beneficial to my mental well being.

I fervently hope, that by next week I can walk. Just normal steps. Nothing huge. Sending out hugs and a heart full of gratitude.

 

Too close for comfort.

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If this were not my life, I would believe someone made it up! What more can possibly happen?

It’s nearly two weeks ago, now, that when I went for chemo, we noticed my right leg being really swollen. All the way up to the groin and down to the toes. Immediately an Ultra Sound was ordered and performed to check on blood clots. I could hear the return ‘swooshing’ of the blood. NO obstruction, they said.

By the time I got home, it was worse and I was in a LOT of pain and could hardly lift that leg. I called twice on that Thursday, needing help and asking what to do?

They said, it was ‘probably’ lymphatic blockage and I needed to go have it ‘drained.’First, there was this thorough process of marking and measuring certain points, up and down the leg. By the time it reached the groin, we had 68cm. (Used to be almost my waist size.)

The massage felt rather pleasant and I was happy that finally something that didn’t hurt. Came home and was miserable.

I cannot move. Cannot walk. Two steps and I’m done for. The skin is so very tight that I’m afraid it may just crack open. I was to have another massage on Friday. Cameron took me there. When the Therapist saw the leg, which now sported a huge, red-hot area of 20″ inches, she became very concerned. Thought it might be cellulitis. (I thought that meant ‘fat-handles’.) Absolutely no massage. I was so worried and requested that this leg should be seen  by a doctor. Easter was coming up and people go out of town and help may be scarce.

She called over to the E.R and then wheeled me over. They inserted an IV. (They did not access the port as that may bring a different problem.) My ‘old’ doc came and I sure was glad to see him. He just knows my whole history. They decided I should be admitted and stay for observation overnight. They were not sure whether this red area was an infection. The Ultra Sound showed at least 3 blood clots. What? Where do they come from? Well, that’s the $64,000 dollar question. Could be from chemo. Could be from the port. Could be from not being able to move a lot. Could be that when I stopped the Ibuprofen, the blood thickened? Well, just a guess. I feel ‘betrayed’. I was soo good to my body the last few years and this is how it pays me back? Childish outcry.

I felt so removed from reality. This is now my LIFE!! A leg that is the size of small tree.  Luckily, cellulitis was ruled out. (Staff and hopsital were great.)

A friend, who is a retired nurse had agreed to stay with me, so I could have help. That fell through. Cameron had already left for Telluride. He has to find a new apartment since winter season is over. We were supposed to fly to New York for a dear friends’ wedding. Certainly I can’t go.

As I layed there, leg way up and in white TED hose, totally feeling sorry for myself, the thought came to me HOW VERY LUCKY I WAS! Yes.  In all of that, I was so very close to disaster. IF she would have massaged the leg, the blood clots could’ve been set loose and traveled to lungs, heart, brain. BOOM!

Had I ignored all the little signs, at that point and went to Germany, this could have turned into a full blown disaster. So, even in all of that, I was protected. Now, all I want, is to just walk again. Do all of the mundane chores. I would LOVE to clean the toilet.

Friends have been a big, big help. Sending food and coming by. But, there are many hours in the day to fill. I have never been so ‘still’ in all of my life. Whole different reality. Having a problem adjusting to these blows, one after another. Back on pain pills. Of course, there’s MJ. My good buddy. Have very little appetite but this could be because I am not busy enough.

I had to give myself shots. Twice a day, in the abdomen.  There were 8 shots in all. That cost? $611.00.  There’s nothing generic or anything else. Either that or you could die! Also taking Warfarin to help thin the blood. It did come up from 1.1 to 2.8.

I think, somewhere along the lines, I lost a portion of my positivity and good humor. I am cranky and whiney. I am in pain and general discomfort. Now, I have to deal with constipation from the darn pain med. (I don’t know me like that either!!)