I've learned to never say "thank goodness the year is over"

At the end of every year, I often hear people say how awful the year had been and point out all the terrible things that had happened to them.  They say things like, “I can’t wait for (insert year here) to end” or “Next year has to be better than this one was”, etc…..  But if anything it seemed as if each year gets worse instead of better. I was guilty of it for many years myself.  I've learned to never say "thank goodness the year is over", because it seemed to be a surefire way to make the next year even worse.

For a while I thought, ok, well maybe if I just quit saying at the end of the year that I couldn’t wait to put it all behind me, that the next year would be better than the last.  But that simply isn’t how it works. No matter what the numbers change to when midnight hits on December 31^st, every year is going to have its ups and downs. 

This year, we saw a lot of downs. Obviously my year literally started with a diagnosis of cancer, and the mistake of opting for a lumpectomy instead of a mastectomy. Hindsight is 20/20 and if I could start this year all over I would definitely do things differently.  Once the radiation started, the first infection set in and I ended up missing more work than I had planned. The surgery to fix my lopsidedness that was supposed to leave me off work for 10 days is going to keep me out for much closer to 6 months instead while dealing with one of those 1 in a billion chance of getting infections that are more common in cows than humans – there’s a real self esteem booster. 

I spent a total of 17 days in the hospital this year, with part of that in an 11 day stretch. 3 surgeries. Dozens of blown IVs, and 2 PICC lines, one of which gave me a blood clot. 

Depression, boredom, severe lack of energy, missing out on so many things with my children and grandchildren. The word “unfair” comes to mind often.

Lately my parents haven’t been doing well, and I have hardly been able to see them due to treatments and doctor orders to stay at home. But it has gotten to the point where the doctor’s orders can’t keep me away any more. I can’t let them. I don’t want to live the rest of my life with the regret that I didn’t see my parents enough because a doctor thinks it could expose me to something to weaken my immune system further. I get that just fine waiting in doctors’ offices for several hours with patients who are hacking their germs into the air.

This year two of our children announced they will be getting divorced. No matter how old they are, they are our kids, and when they hurt, we hurt for them. 

Though I’ve had a rough time health wise this year, both physically and the emotional side effects, it’s been this last week that has been one of the hardest. 

When I was told I had cancer, I knew I could do something about it. I knew I could fight it. But a few days ago when I got a text message in the morning to call a friend, I soon felt total helpless. Her news was something I never would have expected. Her husband was gone. He had died suddenly, and there was nothing I nor anyone else could do. We couldn’t bring him back. We couldn’t turn the calendar back and ask for a do over. The only thing I can do is try to be there for her, and remember him fondly as the fun and caring man he was.

Then this morning, my husband woke me to the news of another death. This time it was the man who had literally snuck around behind Mike’s back to get us set up on a phone call that led to our first (blind) date.  I worked with his wife and I know she too is going through agony.

So now, two wonderful women are mourning the loss of the love of their lives. Their soul mates have gone on ahead and left them behind to carry on without them. It makes my problems seems small. 

What I’ve learned though is this: on December 31^st at midnight, when the year turns from 2015 to 2016, nothing changes.  The pain is still there. There is no fresh start. The year may end with a different number, but it doesn’t erase the pain. It doesn’t make the bad all better.

But it also doesn’t take away the good.

This year I was able to take a one of a kind trip to New Orleans for my birthday – because of the cancer. That trip wouldn’t have happened without it. 

We went to Florida and were able to see Taylor, Kelly and Naz. I swam in the ocean, collected dozens of shells, caught a beautiful blue fish (and threw him back), and had a brief a conversation with a dolphin. I had never even seen the ocean before. 

Taylor was able to come and visit us a couple of times, and was here for one of my surgeries.

We saw The Rebirth Brass Band in concert and We Banjo Three.

We got the outside of the house painted with the help of our friends.

I found out who would be there for me in a time of need, and wouldn’t. 

I attended Women’s Weekend in Lake Geneva and spent a lot of time getting drunk with my daughter.

We welcomed Nadine, our 5^th grandchildren into the world. 

We got 2 ducks, Marga and Rita.

We went to Mackinac Island for our anniversary and though I wasn’t in very great shape, I was able to visit the home of my great great great great great great grandmother, and stand on the same veranda she would have to look out at the lake. I was able to see and touch the tomb where she was buried along with her daughter and grandson.

I saw Star Wars Episode 7.

I got a new position at work and I can’t wait to actually get back there to do it again.

I had a new book come out, and picked up a few more writing assignments.

These things don’t take away the bad things that have happened but they do help to even them out. But as usual I will not be making New Year’s resolutions, I don’t believe in them. If you want to make a change in your life you do it, you don’t put it off until January 1^st and then blow it off a few weeks later. 

Even if the New Year meant a real brand new start, one with a clean slate, I wouldn’t take it. The good comes with the bad, and we just have to learn how to balance it out. Every year is going to have its great times and every year is going to have some devastation.  It’s not the numbers in the year that makes the difference, blaming a date does us no good. It’s all in how we deal with it instead.

Just a quick update

So the quick update on my health status:

Hemoglobin is still too low but getting better.

WBC is down and has been decreasing. Infectious disease doc believes it is from the extremely long use of antibiotics. I’ve been on the rocephrin for about 45 days now, and on one antibiotic or another (several days more than one) for 100 days. I have a minimum of 2 more weeks, but chances are it will be more like another 4 weeks. That would be literally 1/3 of a year on antibiotics. 

The docs can’t figure out why the healing is so slow, it’s healing, just still very slow. The doc did take more culture samples (ooooooh talk about painful!!!!!) to see if they could manage to get any more info.

My primary doctor pretty much drives me nuts, when I get to her office, we wait 2 hours for a few minutes appointment and she just doesn’t seem to have a clue. Doesn’t want me on pain meds for too long (come on lady I did a decade on pain meds or my arthritis, a few months of Norco is nothing). And apparently she doesn’t think having a ruptured boob should hurt that much.  My last blood test from my nurse didn’t match what the docs blood test said so she said the nurse’s was wrong and ordered another one, which showed the nurse’s blood test to be right.

The good news is at the start of all of this my vitamin d level was at 12. Radiation oncologist wanted it up to 40, my acupuncturist wants it at 80. I’m now at 53. So at least that has been improving. 

A lot of other things have been going on though, but that will wait to my next post.

WARNING GRAPHIC PHOTOS 1 step forward 8 steps back

This entry will also contain some graphic photos, both of my infection and actual breasts, because hell at this point most of the medical field in McHenry County has seen them anyway. But I think it's extremely important to show people the effects of this infection and the "rare" effects of radiation treatment.

It’s been over a month since I updated, and unfortunately it hasn’t been because there hasn’t been anything to update.

I made it through Halloween (did nothing but lie on the couch, watch tv and eat a little pizza), but waking up the morning of the first was downright difficult. I was exhausted and didn’t want to get out of bed. Mike finally got me up to get me to the shower, but as I stopped at the mirror to do my pre-shower wound check, I knew something was wrong. Everything was the wrong color and just looked like it was covered in syrup. There was a new area that looked like it was protruding a bit. We called the doc and then headed to the ER.

We were only in the ER a little over an hour and a half when the ER doc came to look at me. They had already taken blood and culture of what was going on. When the doc moved the surgical pad to look, I suddenly felt fluid running down my back. That new protrusion had erupted and erupted big.  (Which was odd anyway because a couple of other times I had even larger areas like that and my plastic surgeon cut into them thinking it would be an abscess and it turned out to be absolutely nothing.) 

Once the IV challenge began, so did the pain. The first attempt consisted of the needle going in and my arm turning into a sudden massive bruise immediately. This photo was taken on the 4th at 1:06 in the afternoon. The first attempt was on the 1st, so it already had a few days to heal.

The second IV went into the inside of my wrist. It only lasted 8 hours. In the picture above you can see where IV 3 was placed (inner side of elbow). It didn't last terribly long as well, because by 7 pm on the night of the 4th, we had a new one in. 

When that one blew that night, after a couple of hours they set me up for a PICC line the next morning. Which was in place before 10 am. they told me it would be good for months, a year if I needed it. It barely lasted 24 hours and gave me a blood clot as well. while the doctors argued over it for a couple of days, they were actually able to get the PICC line working again but one doctor decided she didn't like it there and ordered it be removed and moved to the left arm instead.

I should probably mention at this point that even though I had been in the hospital a few days and was changing the bandaging on my wounds myself, I was not looking at them. I didn't want to see them and since I couldn't see them without a mirror it was easy to avoid them. 

Somewhere about this time one of the partners to my infectious disease doctors came in to see me for rounds (may have been the day before, may have been the day after. The pain was excruciating so I kept as drugged as possible with my allowed Dilaudid and Norco.  His announcement changed things a bit. He said I had been being treated with the wrong antibiotics because the bacteria I was dealing with was anaerobic and they had been treating me for an aerobic bacteria. He said he had only seen one other woman with this and told the nurse and I, we were dealing with actinomycosis. I began a search on the internet and found very little. The nurse and I added in "milk ducts" in our search and found this article: http://www.saudijhealthsci.org/article.asp?issn=2278-0521;year=2014;volume=3;issue=1;spage=53;epage=55;aulast=Suranagi

The more we looked the more we learned its a very rare condition, more common in animals in humans.

The doctor ordered a new culture to be taken and a change of antibiotics. 

On the 5th I  finally got up the nerve to see what I was dealing with.

It again, began changing daily. November 6th:

November 7th:

November 9th:

 

I left the hospital finally on November 11. (yes for those who get it - 11 days and on  11/11)

I was set up with home health care and have a nurse who comes to see me at least once a week. Due to the blood clot I am on Coumadin and have to have that level checked twice a week.

I have to have a CBC at least once a week, and learned last week I am extremely anemic, which partially explains why I can't stay awake. My protein levels are so low I'm malnurished. The fluid that leaks through the wounds and cleans them is called serous fluid. It is filled with protein so as it leaves my body, so does the protein.  Now I get to take ensure and iron pills on top of everything else. My dad did get a kick out of me drinking ensure just like him now though.  This weeks blood test showed another issue as well  -- now my liver enzymes are getting out of whack from the antibiotics(still have more than 4 weeks to go) (shown on Monday's blood test but were still fine last Thursday). Because I'm also on cholesterol meds which can damage the liver, I have to stop those for the rest of my antibiotic treatment.

This was the 14th, though since then the doctor has opened up everything up again.

and this is today:

The picture is a little deceiving as it looks far more healed than it is. The large hole to the left still has no actual skin and the coloring of the skin is completely purple.

While the wounds are healing, something else is not. I did the reduction surgery in the first place because after my lumpectomy there was literally about a pound difference between my right and left breasts. Doesn't sound like much,but it was uncomfortable on my back, and I was not happy with the large difference in size. Since the insuance wouldn't pay to reconstruct a lumpectomy I had no choice but to reduce. I went from a G to a C and then the infection sent in. After my surgery on September 10th they were the same size. I'm now a C and a A. I'm told the "shrinkage" is due to the radiation and is NOT reversible. It's what I'm stuck with unless they end up having to do a mastectomy because they can't beat the infection.

So basically, I have gone through several surgeries, may still need some more, my insurance company has been billed well over $300,000 for the year. I have had severe amounts of pain. My body has taken a severe beating that Im told will take up to a year to recover.  I have missed months of my life, and my job. All of fall disappeared for me. No apple picking with the grandkids. No haunted hayride. No corn maze.  I'm exhausted constantly. For the first year in probably 25 years, my holiday cards wont be the first you receive, if you receive one at all, because I probably womt get them done.  Most of Christmas decorations won't go up this year. My days consist of tv and sleeping because thats all the energy I have.  Somedays I manage to stay awake a full 12 hours. Its a lot to get used to, and honestly I don't want to get used. Feelings useless is not fun.

As of right now, my last infusion day is December 18th...I'm really hoping that the Force really will awaken.