Hello, KC readers. It has been awhile and I thought it was finally time to come back and say, "Yes, I'm still alive."
I've been meaning to post for a long time but it gets hard sometimes. Every time I sit and try to write about the happenings lately - I tend to get emotional.
I has been eight months since I've learned of my bone mets. I suppose I'm doing better than I thought I would be doing at eight months, but in a lot of ways - I'm also shocked at how quickly my life has turned.
I went from running a business, being a semi-single parent (the MR was working in Korea for over four months), running around cooking, cleaning, and taking care of a Kindergartener with a million after-school activities - to being almost bedridden.
How life can change so quickly.
As I approach my 33rd birthday, I can assuredly say this is not the life I had envisioned for myself. It has now been three years since cancer touched my life. I'm thankful to still be alive but at the same time I would much rather not have had to deal with everything I've dealt with these past three years.
Three years ago I was confident. I had a kick-ass attitude and I was sure I was going to beat this stupid, little disease called cancer. I was afraid - sure - but I was also extremely optimistic and thought that if I could find the best surgeon and the best radiation oncologist then I wouldn't have to deal with this cancer again for a very, long time.
I had two and a half years of a semi-normal life before it was shattered early this year by news of my metastases.
I have to admit I knew something was up even before I had the scans that confirmed the cancer had returned. My BFF got married in March of this year - I was her matron of honor. We have been friends since we were 14 years old and I have dreamed of her getting married forever. Do you know how long I've been waiting for her to finally get married? Do you know what I did to get her married? LOL. Let's just say I put a word out to EVERYONE I knew that I had a single friend who needed a man...
NOTHING was going to stand in the way of her perfect wedding. I made sure to schedule my scans for the Thursday following her wedding because I didn't want anything to ruin her special day. I figured she would be away on her honeymoon by then and everything would be just peachy.
Two days before her wedding - I got sick.
I thought it was a cold and I had to skip the pre-wedding festivities (brunch and spa-day) because I wanted to make sure I was in top form for the actual wedding day. The night before the wedding my fever spiked up to 105 degrees and against better judgement I refused to go to the ER and instead stayed in bed taking Tylenol and throwing up. I literally threw up ON my bed because I didn't even have the strength to lift my head and aim into a trash can. All I can say is thank goodness for heavy duty mattress covers. =/
I was terrified to go to the ER because at the time my parents were still working full-time and the MR was in Korea and I was Munchkin's only care provider. I knew that if I went to the ER they would keep me there and that would mean not only would I miss the wedding but Munchkin would be without both parents.
Yes, I was thinking illogically and being totally irrational.
I know someone would have taken care of Munchkin and I know I could have missed the wedding - but my fever induced state wasn't processing things correctly. On the day of the wedding I couldn't get up to get make-up done. I told the wedding party that I would sleep all day and try make it to the ceremony. By noon, it was obvious that I wasn't going anywhere...
I missed my best friend's wedding.
Her cousin took my dress and my place in the line up. Munchkin was a ring bearer and even he was late and didn't have time to get his hair done. I wasn't there to see my BFF walk down the aisle, I wasn't there to see Munchkin walk down the aisle as a ring bearer for the first time, and I wasn't there to see my BFF kiss her husband and seal the deal.
I missed it. I missed the wedding. Everything was a nightmare.
While lying in bed - utterly sick - I had this nagging feeling that the fucking cancer was back.
Through the help of a friend (don't report us!) I got my hands on antibiotics the night before the wedding and was able to feel somewhat normal by the evening. Luckily, the wedding was very close to my house and one of my other friends was able to pick me up.
I made it to the reception JUST in time to recite my MOH speech. I was an utter mess and I doubt anyone understood a word of what I was saying. Immediately after my speech, I kissed the bride and headed home to rest. I passed out the second my head hit the pillow but I was content because I was able to get a few pictures with the bride. I still feel incredibly guilty about having caused such a ruckus on what was supposed to be a perfect day. Never in a million years did I think I would miss my best friend's wedding.
The following Thursday I had my CT's and they confirmed my suspicions. The cancer was back and I was also recovering...from PNEUMONIA.
Yes, I could have died. I now know that next time my fever spikes to 105 degrees, to just go to the damn emergency room.
This second battle with cancer is different. My confidence is no longer there and in many ways I've become complacent. I no longer believe that I will beat this. I'm more pragmatic and just hope I can treat the symptoms and extend my life for as long as possible.
I'm not ready to die.
I've been through four separate courses of radiation. First it was my T-spine in May, my right hip in July, my L-spine in August, and now I'm currently getting radiation to my left hip. As one of my DR's said to me recently, "radiation works beautifully" on me. The spots treated earlier in the year are all shrinking and healing and my right hip looks as if the bone is even reattaching itself.
I'm currently in a lot of pain because I had a compression fracture on my L-spine. The radiation helped TREMENDOUSLY and that tumor is no longer growing, but I'm told the pain I have now may be chronic. This means for the first time since my diagnosis I am actively taking pain killers around the clock. Sometimes the pain killers do not work. During those moments of agonizing pain I feel as if the world is closing in around me and I'm dying - right there, right NOW.
I have gone from walking, to being on crutches, to walking, to being in a wheel chair, and to walking again. It is amazing what the body is capable of doing. My body is destroying and repairing itself on a daily basis. I was having difficulty walking because of a tumor on my left hip bone but after a week of radiation (with two more weeks to go) the pain has already subsided substantially and I am again walking without a limp.
I was also lucky and my insurance company approved an experimental drug called Sutent off-label. I took it for five days at the full dose before I had to stop because of all the serious side effects. The drug made me WORSE than without. I'm now recovering from the drug and will take it again at half the dose. I've spoken to a few people who were able to stabilize the growth of their ACC while on this drug - so I have lots of hope.
I hate drugs. I always hated drugs so being dependent on them is humbling. I can't stand the side effects and I refuse to take more drugs to combat the side effects.
The pain from the bone mets is what drives me crazy. I wasn't able to exercise until recently so my lack of activity has caused my legs to deteriorate into skinny, bony, scary looking excuses for limbs. I weigh just 105 pounds - my weight in high school. My lack of appetite is scaring everyone around me but food is the last thing on my mind these days.
Three years ago, I had no worries and life was moving along blissfully. Business was good, the MR was set to start working under his father, Munchkin was growing up to be a smart little kid. My biggest worry at the time was whether to buy my first Chanel caviar jumbo with gold or silver hardware (I got silver).
It all came to a blow with just one CT scan that showed a mass in my sinus.
Life is unexpected.
You will never know what tomorrow holds for you so be sure to stop and reflect.
Take a moment and be thankful.