Yet more thankfulness

I am Thankful for my friends. I have so many amazing people in my life who have become a part of my family in my heart. I can't say enough about how their love and support has helped me through what could have been the most terrible time of my life. Lucky for me, I have friends who have made this whole thing not so scarey.

I am thankful for my customers. Those people I see every day who make me smile as they tell me how good I look, how they are praying for me and who hug me and pet my hair. It makes it so much easier to keep a positive outlook when I see all the love around me.

I am thankful for my stubbornness. Without it, I probably would have just given in and not come this far. Not many people can say they fought cancer because they are just too stubborn to give up.

I am thankful for dessert. Yes... my motto has become "Eat Dessert first!"  I don't plan to stop eating dessert because the last thing I want is to regret not having more sweets while my health was still great. So... I never say no to dessert. In fact, I think I want some dessert right now!

Some more Thankfulness

Well... I am thankful for medical science. Thanks to various researchers, I am still here. Hopefully, they will keep researching and find a cure.

I am thankful for people who make me laugh. I love to laugh. It's probably one of my favorite things to do. I think a day without laughter is a day that was not worth having.

I am thankful for being an American. I love the freedoms we are blessed with, the choices we can make and the fact that we may all have different opinions, but we are all in this together.

Thirty days of Thankfulness

Gosh... I missed this!  Thanks again Chemo Brain.

So the thought is to catalog things you are thankful for every day. Today is the 11th, so I am a bit behind. Here goes eleven days worth of thanks:

1. My Wife. How I got so lucky to have met the most wonderful, caring woman is beyond me. She supports me in all that I do, she loves me even when I know I am being unlovable, and she is always there to comfort me when I am feeling less than sunshiney.
2. My Mom. Now this is a woman who inspires! She has always done a man's work with a strong woman's body. She loves unconditionally, puts others first and is strong in the face of adversity.
3. My Daddy. Not many men can be the best daddy in the world, but mine is. How many real men can raise another man's child and love her as if she were his own? I never had a doubt in my whole life that my daddy loved me. Even now, I know that he loves me and is proud of me.
4. My animals. What would life be without furry faces?
5. My goofy son. No.... I didn't forget you. How can I forget the boy who calls at 9pm on a saturday to get a banana bread recipe?
6. My extended family. Even though you are all over the place, you are all still with me every minute of every day.
7. My job. As much as I would rather be on vacation having fun, I learned that when I am stuck at home, I miss that place.
8. My health. May I have more of it.
9. My Oncologist. That little woman works nonstop to save lives!
10. My surgeon. Thank you for getting rid of that big yuck and for leaving such pretty stitches in it's place.
11. My Uncle Mel. A Vietnam vet who left us too soon.

Memories

While I was driving around today, I was listening to the CD our uncle made for us of our wedding music. The song we walked down the aisle to was Kenny Rogers "Through the Years." That song always makes me cry. Not in a sad way, mind you, but because it is so true. And while I listened, I thought about the many years I have had with my wife. I remembered some great things... some of which I will share. (Other memories are mine only!)

The year we were first together, we went to the March On Washington. God, we were so young. I remember being politically active... protesting at City Hall when I was in college, marching for my rights, being part of the mass wedding protest. At that age, we didn't realize that by just living our lives openly  we would accomplish more than any amount of marching ever would. I mean... you can hate those strange gays on TV and in the news, but it's hard to keep that same hate and fear when you see your gay neighbor doing the same things you do. Simple things like going to parent teacher conferences, mowing the yard, playing with the dogs, remodeling the house, taking a casserole to a sick friend... these acts become political just because they show how very NOT different we really are.

One year, we had a long weekend and just decided to throw the dog in the car and take off for the coast. We started at Ocracoke and drove all the way to Kill Devil Hills. It was one of the best vacations ever. We didn't do much of anything, except stop to see the sights. We bought a tshirt from each town we went through, took lots of pictures and just relaxed.

Another year, we went to Wilmington in the winter. The beach was deserted. The hotel had a kitchen in each room, so we hung out on the beach, collected shells and ate dinner in the room. I remember bouncing on the bed because I was so excited to be away with my sweetie where there were no crowds.

We took a weekend trip to Brevard and took the scenic route home. That trip was when we found the garnet at the gemstone mine that we had cut and my wife had made into the necklace I wear every day.

We drove to Charleston on the spur of the moment once in the summer (bad idea... summer here is hot, but Charleston is Damn Hot!) and discovered a little place called Stickey Fingers. For years, we would decide we needed ribs and would make the 4 hour drive to Charleston just to have dinner. Now they have them all over... but the best one is still in Charleston.

We always drove to NY to see Ryan in the summer, and we learned that all along the way, there are caverns. We have seen every cavern between here and LI at least once. And if you are driving through Virginia and see the sign for Johnny Appleseed's restaurant... Stop and have the apple fritters. They rock.

We went to Hershey once and toured the factory. That same trip, we stopped at Gettysburg, which is quite sobering. Michele loves the civil war sites. Myself, I find them sad and frustrating. War is so wasteful.

We have gone out on New Years three times. Once we went out just by ourselves. I look at the picture and can't believe that skinny girl in the long back dress is me... but it is. The next two times were when we went out with our dance friends. That was a great time. We danced and laughed and ate good food.

We have had two parties at our house. One was our ten year anniversary, which was also the year after we bought the house. We just opened the gate, fired up two grills and had a party with everyone who showed up.There were kids everywhere with squirt guns, the hose, the kiddie pool. Everyone ended up wet, but Michele got the worst of it. The next was a fourth of july party. That one ended when the neighbors dog ate through the fence.

I have taken Michele to see exactly one Opera. She said... " Oh... thats from Bugs Bunny." and then she slept through the rest of it. Well... at least she tried for me.

I could sit and write all day about my memories with my wife, but I won't. I will say though that I love thinking back over the years and saying "Hey Honey... you remember that time when..." and then just enjoying the memories together. The happiest moments of my life have been in the last twenty years, and I can't wait to make more.

Quick update

Quick update.... Things are going well. I have started my Lymphadema therapy. My arm has been bandaged so heavily that it looks like a cast. It interferes with everything I do. But, the swelling in my arm is going down, so I suppose it is doing what it's supposed to do. Tykerb is treating me well. So far no bizarre side effects aside from the constant burping.  I am doing my best to get ready for the holidays.

Today I went shopping all by myself. I bought some clothes for my youngest niece, as well as a whole bunch of dress-up accessories. I got tutus, princess wands, crowns, fairy wings, two whole pirate sets, an FBI set, a construction hat, a police hat, a SWAT hat, two cowboy hats and an apron. My thought is that she should have a whole array of outfits to be whatever she wants to be, whether it's the fairy chef, a pirate who does construction, the Old West FBI agent or anything she can imagine. I got two of many things because her Auntie Michele will be playing dress up whether she likes it or not. I even got mustaches, silly glasses, clown noses and assorted jewelry. I hope to feed her imagination as much as I can. Now I am busy with getting all the Christmas organized.

I stopped by PetsMart today to get Cleo some aspirin and had a long conversation with the TriCounty Animal group. They have two cats who need foster homes- not permanent homes- just a foster arrangement. See, these two cats are not very adoptable because they are skittish. One is an eight year old Maine Coone Male who was seized in a breeder raid. The breeder had cats who were kept in cages and never allowed out. He is beautifu and was okay with me petting him, but didn't want to be picked up. The other was a female from an abusive home. She immediately was all over me. She is scared of noise, other cats, and fast movements. They want to find someone patient who can rehab these cats. They are mostly concerned about the male. Twice he has been almost adopted, but the age stopped one adoption, and his "angry" face stopped the other. I told them I would think about it. About one of them, at least.  I hate to see an eight year old cat sitting there for over a year with no hope of adoption simply because he has never had the chance to be socialized.

So... that's my week. I hope yours was much more entertaining.

Don't you forget about me

I haven't written much lately. I have been working on scrapbooks, arts and crafts projects and Christmas stuff. At first I didn't really think much about this sudden need to make things... I mean I have always liked doing crafty stuff, but this is getting crazy. But as I sat here working on Ava's scrap book, I realized what is going on with me. It is finally starting to sink in that this is terminal. No... I am not giving up, but I am more aware of how limited my time is.

See... There is, or rather, was a customer at my store who I have been very close with. She has been coming there for over 7 years. She had stage 4 breast cancer. Over the past few years, I have watched her battle it in her chest, her lungs, her eyes and finally it hit her brain. She has been there for me since I was diagnosed, giving me advice, a hug, encouragement and watching her keep on living let me know that I can do it too. A month ago, she stopped Chemo completely. She said she is tired and can't do it anymore. A week later, hospice was called in. A week after that, she was in the hospital. Three days later, she passed. She knew it was coming. She found homes for her dogs, arranged for who was going to take custody of her nephews who both lived with her, got her affairs in order and then she was gone. I watched for the funeral announcement, but it never came. Her family is so dysfunctional they just buried her and never thought that anyone outside of the family would want to pay their respects. I am actually certain that it was mostly a money thing- her brother is a crack addict and her only son is in Iraq. That was all the family she had outside of her extended "family" of people like my store staff, the staff of the grocery store who also loved her, the staff at the hair salon and other people from the community who saw her every day.

It's been a month now since she passed and I think about her at odd times. But the thing is... I remember her. And truthfully, who doesn't want to be remembered? What triggers my memory of her is the sound of someone walking with a cane, the sight of a chihuahua in a car, a woman laughing out loud; things I associated with her visiting me. So I started making things.

Believe me... I am no artist. My crafts are done pretty much the way I do most things, which is "Ehhh... that'll do." For someone who can be such a perfectionist in some areas, that is not one of them. I like what I make, but I know that it could be better. Yet the point isn't to make something perfect, it's to make something that makes the recipient think of me. So, don't be surprised if you open a present from me to find some really odd home crafted something or other. It just means I love you, I thought about you and I want you to remember me when I am gone.

Cancer- Round Two (with helpful hints on dealing with treatment)

Well. It’s back again. The cancer has resurfaced in the lymph nodes behind my heart. It is inoperable because of where it is located. It also cannot be radiated for the same reason. Right behind my heart. Can you believe it? How sneaky can you get? I swear sometimes I think the cancer itself has a brain. How else would it know exactly where to go hide? Ahhh, well… I suppose it could be worse.  You know, I have said before that in some ways, having Stage IV is easier than any other stage. When the doctor told us the news, I was just so happy that it wasn’t in my brain or liver or somewhere else that it was no big deal to hear her say two lymph nodes. I knew it would be back. And sadly, I knew it would be back quick. But I still have faith in myself that I can get through this again. 

So... since I am starting Chemo again soon, I thought I would share some things I have learned along the way. I kept meaning to post these helpful tips and I keep forgetting (thank you Chemo Brain)

Okay... let's start with the four bajillion appointments... Get yourself a calendar to put on your fridge. You go to the fridge every day, so having something there with dates, times and places will help when you have so many appointments. Especially if the appointments are all in different places. Also on the calendar, write down what you paid and who you paid it to. You will be getting a great deal of mail asking for you to pay this and that and it is easy to have one slip past you. Do the same on the bills and set up a file just for your cancer treatment. At tax time, this will be a godsend. At the end of the year, ask your pharmacy for a printout of all your medications. Be sure to keep your receipts for all your health related items, like the bandages, tape, tylenol, and other OTC items that will be a regular part of your treatment. Keep a mileage log just for doctor's trips. You may be close to the office, but believe me, the mileage is going to build up real quick. If you have to visit a specialist out of town, make a note on your hotel and food receipts. Your tax preparer will thank you.

The American Cancer Society has a great folder to help you stay semi organized. Get it. Also... get a three ring binder. You are going to be handed all sorts of information and it is easier to leaf through a binder than to dig through mountains of paper. Your oncologist might be like mine and give you a set of papers detailing possible side effects, with a place to make notes. If so, that's awesome!  DO IT!!! Take notes! Write down each day what you feel like, what weird things you noticed ( Did your toes tingle today? Were your hands swollen? Did your urine change color? Did you get a headache?) and then take the book with you to your appointment. You might only see your doctor every two weeks (or less) and you will not remember everything that you felt or experienced. Remember to rate how much something hurt or caused discomfort according to the scale like the hospitals use (The pain numeric rating scale (NRS), on which patients rate their current pain intensity from 0 (“no pain”) to 10 (“worst possible pain”), has become the most widely used instrument for pain screening). This way, your doctor can help you better manage your side effects.

Your first few appointments are probably going to include a lot of scans that use that gross jelly stuff. Take some wet wipes.

For your safety, get a medical alert bracelet or pendant, preferably one that has a place to write all your info. That way, should you be in an accident, or have a medical emergency somewhere, there is a list of your medications on your person for the EMT's.  Have a card with emergency contacts in your wallet. Ladies... a big purse is awesome for carrying the millions of things we MIGHT need, but a small wallet you can put in a pocket with your insurance card, doctor's info, emergency contacts and a note concerning your health care directives will save time. 

Speaking of health care directives... if you haven't done it yet, you need to do it NOW. Have it on file everywhere you get medical attention. You need to have someone, other than yourself, who can speak for you, access your records and make decisions just in case something happens at a time when you are incapable of making the choices yourself. Also, before you start any kind of treatment, you might want to do some end of life planning. No... I am not being morbid, I am telling it like it is. If you want to be sure that your wishes are carried out exactly how you want them, then you need to take care of it before you start any sort of treatment that could later be used in court to say that you were mentally incompetent. Do you think someone in your family might object to anything you want? If so, that is all the more reason to get it done before you take the first Xanax, Hydrocodone or Percocet.  ( Here are some great resources http://www.caregiverslibrary.org/caregivers-resources/grp-checklists-forms.aspx     Or  http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289 )

Okay... You have your diagnosis and you are about to start chemotherapy. My biggest piece of advice... Get a blanket. Those places are freakin cold! You can always tell who has come for their first treatment because they have no blanket. Oh, they have bag with books, puzzles, their phone, a music player and stuff like that, but after about 30 minutes, you see them burrowing into the chair. Personally, I stopped carrying anything to chemo but this short list : my green fuzzy blanket, my stuffed dog (thank you again Jenn) and a bottle of water. See, I learned quickly that I will sleep through the whole thing, so why carry things I won't need. Dress comfortably. Oh yeah!  and while I am on the subject of dressing, let me issue a small warning. If you have a port like mine in your chest, you are at some point going to have a blood related stain on your shirt. Either bring a Tide wipe, or do what I did... go to Goodwill and buy shirts just for chemo. Mine are soft material with button fronts that I bought in the mens department. They make it easy for me to only expose as much of myself as I have to for the doctor. I can stick the tube through the space between the buttons so I don't have to remain unbuttoned in case I need to go potty while I am hooked up and if they get blood on them, I am not upset because I now have a blood stain on my favorite shirt.

Also... if you have a port, you will be putting a cream on it an hour before your appointment. Don't skimp. That stuff is meant to numb the area. If you get some small Tegaderm patches (about 2x2), you can put it on over the cream to keep it from getting on your clothes. When you get there, don't be afraid to ask them to freeze the area. There is no need to be in pain.

Your first week of a new Chemo regimen... be prepared with plans and back-up plans. If you intend to work through it like I did, then be sure you have a back-up plan in place for you to go home when you need to. The last thing you want is to be stuck at work and be throwing up your toenails. The first couple of times you have treatment, watch for when you start to feel the effects and schedule around it. Mine was two days after the actual chemo, so I would go to work after I left the chemo facility, work 10 hours the next day and then the next day, my vomit day, I stayed home. My staff knew what was going on and were prepared just in case we had to make any emergency scheduling changes.

Now... the Mastectomy. There are all kinds of sites that tell you what to pack for the hospital stay, so I won't go into that here. I am going to tell you about when you get home. Let's start with those wraps and bandages and the bulbs. Let me say, the itchiness of the bandages almost drove me crazy. My mom tucked a pillow case between my skin and the edge of the bandage/bra.  You can order a lovely post mastectomy camisole if you want. It has pockets to hold the bulbs and is made to work with the bandages. I am not one for buying stuff that I will only use for a few weeks, so here's what we did. Scarves wrapped around your waist will keep the bulbs from touching your skin. Men's  muscle tee shirts pulled on over the bandages are softer than the bra, can be folded up so they don't interfere with the drains, and safety pinning the bulbs to the neckline keeps them out of the way. Footie socks fit over the bulbs nicely to keep them from irritating your skin. Eye glasses holders ( those cords that you slip on your glasses to hang around your neck) are great to pin the bulbs to so you can bathe. Orajel (benzocaine 20%) is great for the stitches that are holding your bulbs in place ( every move you make is going to pull on those stitches). If you are a stomach sleeper like me... this will be your biggest challenge. So... either sleep in a recliner or find a way to barricade yourself so you don't roll over. We took the sofa cushions and barricaded me so that no matter which direction I rolled, there was a huge pillow stopping me from rolling on to my stomach. We also placed large pillows in the bed so I was partially upright. 

I am sure I have more stuff, but my chemo brain is acting up, so I will close out now by saying I hope this helps. I wish someone had told me all this when I was first diagnosed.