Much for which to be Thankful

(Written Friday 11/25)
This morning Bob was helping me change the dressing for my drain. I was in a particularly whiny mood and complaining how I just wasn't feeling very well both yesterday afternoon and today. "You know," he reminded me as he anchored the tubing in a more comfortable position, "It hasn't been a week yet since your surgery." I am thankful for a husband who is able to keep the big picture in front of me.

Hmmm. He's right...as usual. So with that in mind I lie down for a nap and get up feeling much better. One of my friends wrote me the other day that having two surgeries so close together would be physically draining. "But," she wrote, "Do it anyway." So I have and now hopefully am done with surgery. December will be the beginning of my recovery. I am thankful for friends who remind me to do what's best and face these challenges with optimism.

Our Thanksgiving meal this year was pretty different. I spent most of the day on the couch and each time I would think to ask if this or that was done or made I was reminded to relax and not worry. The rest of the family had things well in hand. And dinner was delicious without my intervening. I am very thankful for a caring family who are right here to lock arms and go through this with me.

Over the past month I have been given plenty of opportunities to let others be in charge. It's one of those simple life lessons that you see posted as bumper stickers... you know, like Let go and let God. Let someone else handle things when you aren't up for it. One of many lessons I am continually challenged to learn the hard way. I am always thankful for optimistic people who remind me of the power of God. (Trust in the Lord with all your heart; and lean not to your own understanding. Proverbs 3:5)

As we celebrated this year we reminded what a great country we are in. Our health insurance (for which yes, we do pay a significant amount) has allowed me to be seen by specialists quickly, have new technology testing and less invasive surgeries in a very short amount of time. It appears that my doctors and I will decide the best course of treatment and we won't have to waste time appealing to a third party. I am very thankful for these healers and the positive outlook they bring.

Thanksgiving is a great chance to think about our many blessings. Often we take for granted our family and friends. This month we have been fortunate to be reminded of our many loved ones as offers of prayers and assistance come flowing in. We are indeed thankful for everyone. I hope you too are as lucky.

Two Surgeries in Two Weeks???

Several of my friends have had major events upon reaching the age of 50. I thought I would be lucky and spent most of this past year bragging how my only "age-related" issue was this very early gray hair. But, now I join them as I hit these unexpected speed bumps on the road.

I'm reminded of sledding. Growing up in Alaska we had plenty of opportunities hike to the top of a hill and jump on our sled zooming down to the bottom. Some kids would choose to go at break neck speed but I was never so adventuresome and drug my boots as brakes. Now when the kids go sledding in Strawberry we use inner tubes which work well on the soft snow but there is no steering. Have you been on an inner tube and found yourself looking up the hill, speeding down backwards with very little control? That's what this month has been like. I can see clearly where I've been but I'm having trouble seeing what's upcoming. I know there are dangerous trees if I don't stay on the path.

The pathology report came back last week. It was kind of a good news-bad news report. The entire tumor was removed but the final pathology report showed that there were tumor cells in one of the lymph nodes tested. Because of this both the radiation oncologist and the surgeon feel that I should have the rest of the lymph nodes in the area removed. Fortunately, these guys don't mess around and this second surgery is scheduled for Monday, 11/22. Based on everything we have been told this surgery should be shorter but the recovery might be a bit slower because I'm just barely recovered from the first one.

Now you see why I feel like I'm zooming down the hill backwards. I'm not in control of things and this puts me in a position I'm not used to. I know: Let go and Let God... I'm trying.

In any case, I have had the best post op care possible. I am scolded by my parents when I do too much and they have been super busy trying to anticipate anything I might think I should do... The kids both worry too much and are being especially helpful. Bob has on his super stress hat which means that the garage is organized and this afternoon he is already putting up the Christmas tree.

We have also been blessed with meals and many offers of assistance. And you should see the cards, flowers, and other gifts... You can see one example here. It's called a butterfinger tree! For whenever I need one of those pick-me-ups... Yum.

So we head into Thanksgiving week with a new perspective on life. We are especially thankful this year for our family and friends. The doctors have been very optimistic that because I am "young" the treatments will be effective and I'll be good for many more years.

3 Days Post-Op and I learn I'm not Superwoman

Yep, it's true. Yesterday morning I felt great. Fog from the anesthesia was gone and I was good enough to take a shower. Time to get rolling... The folks left to get some groceries but before leaving questioned how I was feeling and gave me strict warnings to relax... Of course, it wasn't long before I noticed the floor needed it's daily mopping. I was up for it... Or so I thought. After just a few strokes with the mop I realized that I would have to do it one handed... But I got it done and all the evidence put away before anyone came home.

Shortly after their return I could feel the energy leaving me and when my friend stopped by I was barely able to sit up. Mom noticed I was puny and I was relegated to the couch while they visited. It didn't take long for me to fall asleep. Later in the afternoon I admitted my folly which I'm not sure was a wise move...now I'm like the president with an agent at my side every move.

This morning, after my best night's sleep in a long time I thought, "Today's the day." Wrong. Another friend stopped by and again it didn't take long before I had to go lie down. But I wanted to get out of the house so Mom, Matthew and I went to the store. Those of you who know Matthew will get a real kick out of this--in the store he put his hands on my shoulders and tracked my every move. Halfway through the store I decided that we'd better quit or I'd be in an embarrassing heap there in the aisle. Sheesh. I hate admitting when my mom is right.

Other than that I am good. I love this super glue stitch stuff. I have no band-aids, butterflies or stitches...just purple glue. It is very cool. Surgery went as expected and recovery was just loads of fun. I'm looking forward to the visiting the surgeon next week and then getting started with the oncologist. More important, I have been on the receiving end of a huge number of cards, emails, phone calls and visits... Family and friends have been doing a great job of reminding me how blessed I am. I also especially enjoy hearing from cancer survivors. The strength and faith of people continues to amaze me. I hope to follow your shoes. But for now, (and don't tell my mom... I'm going to lie down and maybe take a nap...)

FAQ Additional Information

As soon as I hit "publish" last time I realized there were several unanswered questions. So here are some details for the medically minded:

Specifics

• Type of biopsy--core with needle aspiration under guided ultrasound done in the surgeon's office...kind of a cool tool that looks similar to a meat thermometer and has a tiny needle that comes out at the end then shoots CO2 to freeze the tissue before it grabs a piece. The doctor used a local anesthetic so it was pain free.
• Cancer type--biopsy showed ductal and lobular mix. The doctor said if there is any ductal involvement it is called such. It is grade 1 which means a less aggressive form (this is good.)
  
• Tumor size--xray called it 1.5cm. Doctor said about the size of a quarter while the MRI report said it was 3.3 cm. The actual measurement comes from pathology after the tumor has been removed and was 2.1 cm.
  
• Staging--This is whether the tumor has spread beyond it's initial borders. The doctor ordered the MRI pre-surgery as part of this work up. the MRI was normal. Staging is done from results of the sentinel lymph node check and the additional pathology tests following surgery.
  
• Initial Post-Op results--There was one positive lymph node out of five tested. Both the surgeon and radiation oncologist feel it will be best to remove all the lymph glands in the area (surgery is scheduled for 11/23).
• Surgery--As I wrote earlier, the first surgery was without complications. The hospital staff were excellent and caring. Their compassion helped everything go well. Post Op I was surprised at how long it took for my body to really wake up. For some reason I figured if I was only out for 3 hours I should be well awake in 3 hours...not so.
  

Procrastination and Your Health

Don't do as I do...do as I say. That's the lesson I learned this month.

There has been a mammogram request floating around the house since last February but because it wasn't a priority I didn't get it done. Then, the first week of October I noticed a lump in my breast. Luckily, I had the order and didn't have to waste time seeing the doctor but was able to get in for xrays the next day. Films turned out fine (technically anyway) and I went home thinking it was my imagination.

When the office called me the next day though, I was pretty sure things weren't okay. They needed me to come back in for more xrays and an ultrasound. Years ago I actually worked in the xray department and did mammograms so when I saw the film I was pretty sure what I was seeing... There was a noticeable mass that was obvious when comparing one side to the other. I was fortunate again, and able to see my doctor right away, who first chewed me out for procrastinating. "Priorities," I said, full of excuses. I am pretty sure my doc was thinking, "BS" but she didn't say it. Instead she comforted me and recommended her favorite surgeon for a biopsy.

After what was a very long week and a half I saw the surgeon. She is at a center where they only deal in breast surgeries. I expected to see the doc and then return at a later date for more tests. But no, she offered to do the biopsy that very day. Since the mass showed up on the ultrasound they were able to easily snag some tissue for the biopsy. Honestly, it did not hurt and the procedure was interesting to watch on the ultrasound. I can't say Bob was all that thrilled but he's tough and I told him that if he passed out they would just push him aside until they were done.

When the biopsy was finished the surgeon made an appointment for my follow up visit with a promise from the surgeon that she would call with results. It was a time to be on pins and needles. It was a time spent on pins and needles. Was it fibrous tissue or a malignancy? Was it a complex cyst (not likely from the US) or or just a thickening? I tried to stay away from too much research but you know me... and things looked a little better when I read the statistics on stellate mass being benign were 75%.

Unfortunately, this hope was dashed when the doctor called, "Is now a good time to talk?" she asked. "I have your results and it's what we thought it might be..." At this point I know she told me many important things but my brain had stopped working... CANCER was all I heard.

I cannot tell you how many things flew through my mind that afternoon. Facing your mortality is a scary idea. Did I wait too long? Who would take care of Matthew? Would I see my daughter graduate from college? Become a doctor? Marry? What about my parents? They're getting older...they need me. What about my husband? Can he figure out my crazy accounting system or even find the passwords to get into the checking account??? Then came the realization that I had to now tell people and how do I tell my folks? My sister? My baby brother?

The next week was a blur. We decided to track my parents down where they were gold prospecting in the desert and tell them in person which was a smart move because my brother called them the next day to make sure they had gotten word. I was hesitant to write a non-personal email but ended up doing so because it was less stressful to me and I could more easily catch family and friends. Not only did offers of help and especially prayers start flowing in but also personal stories from friends who were survivors. Their assurances continue to give me strength. The rapid response of email has made this time pass much more quickly.

Last week I had more tests and everything so far looks like the tumor is confined to the one area. I am scheduled for surgery Monday.

Times have really changed from when I was working in the hospital. Surgery will be done as an out-patient and I'll be home in the afternoon. The tumor and surrounding tissue will be removed and they'll inject some radioactive dye so that the doctor can trace back to the lymph nodes that feed the area. She will remove only those nodes and if they do not show signs of spread can stop there. After I am healed from surgery I'll visit the oncologist who will do radiation therapy and most likely chemo.

Whether to write this publicly has been a challenging choice. Can I be an inspiration? More likely I'm a poster child of what not to do... Will sharing these challenges help someone else? Can I stay positive? Since you're reading this you can see my decision. I promise not to go into gory details, though I will tell you the doc said she is using super glue to hold me together...

So, what have I learned? My parents asked me this the other day. (They are so concerned they have already been here two weeks...which is good as Matthew loves having Grandpa around and I have been able to pawn off Rebecca's school related questions --like "Can you read this report and tell me the negative and positive contrasts?" to Grandma.) But back to my question... I have been reminded that especially when one is a caregiver it's important not to procrastinate...even though it's easy and I have plenty of excuses. The caregiver's health must also be a priority. And, yes, most importantly, get your mammogram when your doctor tells you to.

Chief Toenail Clipper

Sometimes people ask me what I do with all my free time. After all, I don't work (for pay at least) and I've got my family trained to keep the house neat as a pin (apparently this is in a parallel universe).

Generally, I find that I wear many hats. Most days housekeeping is top on my list. I am the only person in my family who can sort clothes for the washer and no one else knows that you have to lift the lid when you clean the toilet... But those are stories for another day. Today I am ... Chief Toenail Clipper.

Now I know that unless you have small children or care for someone who can't quite reach their feet you only have to manage your own personal hygiene. But having a special needs son puts me in charge of him...and what about those pets?

Matthew hates to have his nails trimmed. First, he sticks his foot up still socked. Then I get his socks off and as soon as I touch his toes he starts complaining like he's being stabbed. "Ow! Ow!" I bet the neighbors can hear him. Thank goodness there are only five toes. When I tell him to give me the other foot he fakes it and sticks the already trimmed toes back at me. "Ha, ha, ha," he thinks I won't notice.

So, son is set. "Whew, torture finished for another day." Now it's time for the dog. I never noticed her toenails before we got wood floors. Now every time she walks through the house we hear her clicking. Sadie thinks she is on guard all night so she goes from room to room checking on everyone. Click, click, click. Click, click, click. Every hour...

She is worse than Matthew and starts quivering when I even get the clippers out. I'm always scared of cutting to the quick and really hurting her so I picked up one of those "As Seen on TV" trimmers. It is a very cool tool with a little grinder. I'm sure you've seen it--the dogs are actually smiling as they get their pedicure. The "As Seen on TV" trimmer works well but it's battery powered and I always run out of batteries. I was complaining about this to my mom who told me that one of the boys uses his little dremel tool (a little high speed spinning tool with a neat variety of attachments including a sander). I knew Bob had one so the other day I tried it out. Bzzz, it worked great and then vroop-- I caught her tail hair and wound it tight in a giant wad. As you can imagine, Sadie didn't get too close to me for a few days. I'm back to using the battery powered tool but she still doesn't smile like on the commercials.

Last on my list for today are the cats. They are wise to my ways and it's tricky just catching them. Years ago we got tired of them scratching the furniture when we would leave town (cat claws and leather do not mix). So we decided to have them declawed. Yes, I know it's inhumane and hard on the kitties but compared to the cost of a new couch??? I made the appointment and we borrowed my folk's dog carrier. Then came the fun of rounding up the cats. Back then Bob still thought cats would act like dogs and come when called but of course, ours saw the carriers and went into hiding. We tracked down the smaller of the two cats but when we tried to put her in the carrier she turned spread eagle with a three foot wing span and there was no way she could be stuffed into the hole. Fortunately, the dog carrier was big enough for a hound so we managed to get her inside. The poor larger cat was then stuffed in the smaller carrier with barely enough room to turn around. But for good cause...right? Bob planned to drop them off on his way to work so I was very surprised when an hour later he showed back up--and even more surprised that he had cats in tow. The vet's office had neglected to ask their weight. Spunky, the fiesty one, weighed in at 12 lbs and they wouldn't declaw a cat over 10 lbs because it was too hard on the cat. Salem was a whopping 20 lbs! There was no way he would ever thin down enough. So the cats, like everyone else get their nails trimmed by me. We have to be sneaky and have everything in place. And we have to work fast...cat's might have a lot of patience when watching birds but not when being held.

Finally, the job is done. There is a tremendous benefit to this job... No One will come near me the rest of the day.

More Government Dealings

It was the first of August when I last updated you on my dealings with the government agencies. Ramblin Rose August 3 To be truthful I was so mad at the system that I pushed it all aside and decided to wait for a better day.

Luckily, time dims the memory and the first of September I contacted Matthew's case worker again. Since he had offered that I could provide habilitation* services I decided to take him up on the offer.

Why do I torture myself like this? I know you are asking and there is only one reason. If I die tomorrow someone will need to be here and care for Matthew. Bob can't drop everything and stop working. I know without hesitation that my parents would step in and do what is needed and yet, it would not be without a major change in lifestyle for all. So I continue to pursue getting these services for Matthew hoping that I can save someone else the grief.

So, following my phone call, the case worker comes for a visit to put the services into action. I am smart this time and set up the appointment when Bob can attend. It's a good thing because he reins me in from complaining too much. The young case worker is pleasant enough. He apologizes that they denied coverage for the attendant care and I explain again that I'd like to get going with the habilitation services. "Let me make some phone calls and we'll get this started," he says with a grand gesture. (Bob tells me later that this guy reminds him of a used car salesman.)

Within two days I do receive a phone call from a gal who says, "There seems to be some question...yes, of course, you are ready for habilitation. Everything is in order."

Well, I am pretty humbled and acknowledged that the case manager did his job. Until I send in a time sheet. Of course, another agency takes care of this part and sure enough I get a phone call. "We don't have any authorization for these hours and we need a pay rate before we can process the time sheet." I should have known.

A few phone calls and several days later I discover that there is one more agent who needs to make an assessment. After questioning the need for this "again" she looks at our file to find it's been over a year since starting. This person is very gracious and apologetic. She manages to calm my frustration and we spend more than an hour going over Matthew's needs once again. She finishes up and assures me that as soon as the central office receives this information they will be able to pay me to provide Habilitation for Matthew...oh wait, I am not certified for Habilitation; I am only certified for Attendant Care. I'll need to take a class for the Habilitation... it's deja vu all over again.

*FYI: People with special needs can qualify for services that are covered by each state. Services, number of hours allocated, and rate of pay depend on needs of the individual. Habilitation is working with the person to "learn" a particular skill. For example: Me brushing Matthew's teeth would qualify under Attendant Care. Teaching Matthew how to brush and offering assistance and guidance would be Habilitation. Fixing lunch is also Attendant Care while hand over hand use to spread peanut butter on a slice of bread is Habilitation. Also included in Matthew's services is Respite which is providing someone to make sure the individual is safe while allowing the caregiver a break.