Christmas love

I have not blogged for a while. The business of life has been enjoyable. November and December have been very busy months for myself and the family.

We celebrated the kids birthdays. We also enjoyed a small weekend trip to an indoor water park. Celebrated thanksgiving. Did homeschooling I between shopping and now I am looking forward to Christmas Eve.

Praise God! I had clear scans and my final treatment for the infusion phase of the clinical trial of ipi. Next is the maintainence phase where I will be visiting the cancer center to receive scans, doctor visit, and treatment every three months. I still get the constant anxiety when the scans are coming up, which are in a month. I just need the sigh of relief that things will be alright for a little while.

 I really cannot express the joy I have to be with my family. I enjoy the smiles and especially the laughter. I love the happy moment and I revel in it. But always in the back of my mind I have this fear of cancer.  I need to appreciate the moment and live in the preasent. The preacher at church expressed that eloquently today, especially in saying, "put your faith in Christ today because tomorrow may never come." I need to cry out to Jesus when I fear what the future holds. I need to put my burdens, my worries, and my troubles on Him because He gave salvation for me and all who believe.

Hopefully, this Christmas I realize the truest gift is Jesus.

Some Good Results

Well! I has been a while since I last blogged. The good news was I got the results back from my removal of my mole and luckily and praise God.... It was benign. Now I just have to look forward to my upcoming scans on Thursday. The anxiety over the scans is killing me but I will trust in Him and I will not be afraid.

Waiting on Results

So, I have not updated on here in a little while. I had my last infusion treatment of Yervoy for the every 3 weeks. My scans are November 1. I had a suspicious mole on my shoulder and I had that removed. I am still waiting for the results but the dermatologist didn't  think it was anything.

These waiting for the results is making me crazy. At least, I am not really feeling the results from the drugs like I did the last treatment. I am just really in a mood of hesitation due to the upcoming scans. I am really fearful that I will have more cancer someplace else.  I just need to trust in the Lord and live for the moment.

Nerves

Well, I have been anticipating my upcoming treatment this Thursday. I am nervous and relieved for it coming it.  I just want it to be over so I can enjoy the upcoming month of November. November is a very busy month. Usually, I celebrate my kiddos birthdays and enjoy Thanksgiving.  I am afraid how my body is going to react with the last treatment. I have been having a lot more energy and can actually take care of the chores around the house without complete exhaustion... excepting for cooking....long story.

I am afraid of the scans as of November 1 too. Scans always make me nervous and in previous posts I have mentioned I am terrified of a recurrence. The psychological bargaining one is placed is so difficult through cancer. I ask God in my prayers to take away my nervousness and fear because He is the only one that knows all and sees all and knows what is on my heart and I need to give Him all the glory!

Late night Despair

Lately, I have been on the verge of psychological collapse. I have been constantly crying and feeling sorry for myself. My self-pity party was wearing on myself. I just was upset over the whole situation of having cancer and watching my health deteriorate in front of my eyes. The frustration that there is nothing I could do and little I could do to control the situation of losing all my weight and being sick from the drugs just got to me. I thought why me God.

Luckily, I got the docs to put some iv fluids and add some drugs to my daily routine. I have been gaining some strength back but I still have one more treatment. I am scared on how much that will knock me out and the scans in two weeks. This cancer experience in terrifying. I think God is really breaking me to build me up. I was a at a point of total despair the other night. Just thinking what is the reason for this God. Why me? And the song lyric popped in my head, "I am not finished with you yet." I do not know what God has in store for me. For all, I know I may have six months to live or another eighty. I just need to trust in Him who saves. After some more pondering and crying, God gave me a peace. Its just something that is so hard to describe. Just a peace, that is really intervention for my self pity party. The verse came into my head, "Be silent, be still and know I am God!" All I need to do is trust. Thank you God for that reminder! Help my faith remain on fire for you

Glorious Food!

For the last 2 infusions of Yervoy, I have had a see food and puke diet, leading to lots a weight loss. I talked to the docs and they had be try various prescriptions to get rid of the nausea. Finally, after puking 5 times per day, they have given me a wonderful elixir of prescription medications where I can EAT.

I can hardly describe the words of eating an entire hamburger after a protein avoidance of 3 weeks. It  was great. I am slowly ingesting what I can in small intervals because I am still just skin and bones. I am still tired alot and we had to make the decision of packing up the fam and taking them to the in-laws so I can rest better. How I am thankful I married in to a bigger family.

I am feeling better and my mood is perking up. I had a good talk with God and I need to understand all things are in his will.

Down and Out

So, I was saying in previous posts that yervoy has been sapping the life out of me. I have been really sick with nausea and losing weight. I have been resting most of the day throughout the last couple weeks because I do not want to up chuck anything. With so much time laying around, I have been having a pity party for myself. I have been upset over this diagnosis. Emotionally drained thinking that, I will have a reoccurrence at anytime. I am paranoid and depressed. I keep on reading blogs of others who are so positive and have such a strong faith in God. I doubt my health especially at this time because I am so weak now. I think I am going to die from this awful disease although I have had clear scans.

Lord, Give me faith to do your will and accept your plan for me.

Have not posted in awhile

Well as of lately, I have not been posting lately. The treatments of Yervoy are just making me tired . I feel likes baby on how much I sleep. At  one point I was taking two naps a day morning, afternoon, and going to bed at 8pm. Since, I just had my third treatment with the clinical trial. The accumulation of all the medicine in my body is having its effects but I seem to be on the mend. I need less sleep lately and able to take care the little ones without having someone around to help.

I also lost a lot of weight in a 3 week time period. 16 pounds total. I went from 155 to 140 . My. Weight lost plan is surprising working wonder. (just kidding). Part of the reason, I lost so much weight is I had a horrible case of nausea and I had no appetite because of it. Hopefully, I can get progressively stronger with little implications and side effects.

The Face-kini

I have a little bit of frustration with those  in the overall American society that recognize beautiful and healthy as tan. Tanning in the solar fry beds of tanning salons and the good old fashion baby oil in the sun is harmful despite the numerous media campaigns contributed by cancer-fry industry. With that being said, I have a product solution to solve those tan and burn campaigns.

Introducing the Face-ikini:

The Chinese created this contraption to solve exposure to the skin. So, I hope all you will enjoy the new ski mask for the pool.

Another Treatment and Skin Scan!

I had another treatment today. It was a little unpleasant in comparison to the initial treatment. I had a wee bit of a headache the entire time and it didn't help that I had cabin fever going on the entire time.

In all though, I have reason to be excited because they cut nothing out of me with my skin scan! I was completely nervous going in there especially in my moodiness. I get more and more crabby every doctor's appointment. I guess I just need some peace of mind. Eventually, it will come to me.

Limitations!

I have been completely paranoid lately and man does it really get me into a funky mood. I am constantly and consistently checking my skin throughout the day. (I need to just get rid of all my mirrors.) This nervousness is overwhelming and frustrating at points. I need to get to the point in reviewing my health in letting go and letting God.

The control factor that I have in the illness is very limited. I will not know if I will be here in the next year or in the next twenty. Right now, I need to put my faith in the one who saves but to be honest. I doubt. I am fearful and come down upon myself that I will not win this fight between my faith and my desire for self-preservation. 

On an update, I finished my first treatment if the trial drug Yerzoy. Other than, the feeling of itchiness at points and one swollen lymph node, I feel pretty much the same. I have an appointment with the dermatologist Wednesday and Thursday is treatment day.

Yerzoy Treatment

I have not posted in quite sometime for a newly diagonosee. Its been since April, I have been apart of this disease. And two surgeries later and some gaining in patients, I think I feel a calm acceptance. Melanoma is always in the back of my mind. I have that constant paranoia of another re-occurrence some where else on my skin or in my body but I have the strength and faith that all is in God's will and Providence and what does not kill me only makes me stronger.

I had my first treatment of Yerzoy last Thursday. It was quite exciting to know this medicine may be the next promising drug for future melanoma patients in Stage IIIB. The hospital staff was very nice and friendly. I have had very little side effects practically none at all. Its kinda strange that I have this drug in my body but little residual effects. I keep on wondering is this stuff actually going to work. I guess I will know in the future.

My treatment schedule was mailed to me today. I have excitement on received this and I also am nervous. The transfusion of drugs does not bother me. Its those darn scans. I would have to admit anytime I see the word scan on a piece of paper with my name along with it. I get that scansxiety terror. I hope soon I will over come that debilitating disease soon.

THE RESULTS....

I finally got my results back for my clinical trial. I can only remain patient for so long but I am really getting tested. For the clinical trial, I will be on the research arm on the study, which is exactly what I had prayed for.  Yerzoy aka ipilimumab will be the infusion drug.  I hope it works!

The Waiting Game!

I got the results back from my scans! Thank God they came clear. I have such a sigh of relief with this. Now I am still waiting for the results of which drug I will be taking for my clinical trial. Its either Interferon or Yerzoy. I am hoping for the later but I am still waiting for the results of this. I pray that I can get some results of this soon.

Worry Over Results

In the midst of waiting for my results from testing for a clinical trial I am participating in, I am very (extremely) worried about them. I don't know why I am. I guess the nervous feeling that I may have additional melanoma in other areas internally, despite having a scan less than 6 weeks previously. My husband keeps on insisting that I have nothing to worry about but I feel like I have everything to worry about. What if I have tumors elsewhere?

Now, I am in a state of constant paranoia. I am frightened of the possibility of being upstaged to even more worse statistical category. I guess I have selfish intentions of desiring to live longer but in my stage of life I have made a lot of the many "life" accomplishments. Find the love of my life, married, had children, purchased a house are all the things I have done. But I still have the desire to live a little longer on this life, I feel that I have even more to give in this life. 

I just have to accept that  I do not have control.

Anxiety Over Scans

I have some up coming tests and scans Thursday for the clinical trials I am doing at the local hospital. The anxiety is overwhelming. I am more crabby and angered more easily this week. The little things are really getting to me.

I had a good cry session yesterday night because of my self-pity. The overwhelming feeling of lacking control is really frustrating. I need to put into God's hands and trust in Him to know everything will be okay.



Scans are tomorrow! Pray everything goes well!

Good Intentions Gone Wrong

Recently, I made a post on my facebook page just as a helpful reminder this summer to all my friends. Well, I can't even make this up. It goes as follows:

Me: Tanning cause cancer. Remember apply sunscreen.

Comment of "friend":  alot of new research seems to indicate that it's actually the chemicals in most sunscreens that cause/promote/accelerate cancer. This is due to the chemicals trapping your sweat and mixing with it and the toxins your body trying to sweat out of the skin...and then letting the toxins trapped there bake in the sun....google it ;)


Now I have to come clean. I have not told the facebook world that I have Melanoma because, frankly, I do not want to deal with people even though most have good intentions. 

 This one just made me laugh and the sarcasm in me was saying, "Been there. done that." This is just one of those good intentions gone wrong but I think I will put my faith in sunscreen rather than getting a nice burn and look like this.

50/50.. A good movie for laughs...

I recently watched 50/50 for kicks and needed some humor because I am in a funky mood... i.e. I am feeling sorry for myself.  Basically, the whole premise of this movie is this young guy gets cancer and the prognosis is not good.  Boy, doesn't that sound familiar? It goes through the steps of the process of getting the initial diagnosis and directly handling it internally and externally. The main character had great development but the romantic side of it was expected and predictable. The only thing really lacking with the whole cancer process portrayed within the movie was the constant feeling you are vulnerable for another re-occurrence of the disease. At points, this can be a paralyzing fear. I would recommend to any  young person with cancer.

Best Quote:
Adam: A tumor?
Dr. Ross: Yes.
Adam: Me?
Dr. Ross: Yes.
Adam: That doesn't make any sense though. I mean... I don't smoke, I don't drink... I recycle...

Cancer needs some humor sometimes

After going to the doctors offices so often within the past three months, I think this video says it all. Enjoy

Thoughtful Idea of the Day

I came across a very interesting quote. As a cancer patient, I am still pondering this myself.

“Cancer sucks, and, when you have it, you don’t have a lot of privacy in the hospital. You’re naked. Being naked and alone can be terrifying … but being naked in a group can be quite beautiful.” 

John Wilibanks

This is sited off an organization's website called TED by a speaker for one of their conventions. Personally, I am not able to view it but Mr. Wilibanks came up with the concept of sharing medical information through unconventional sources. His concept base was "a database where, in the future, more than a million participants will give blanket consent for their medical and lifestyle data to be shared and studied." Hence, the quote.

The sense of community is lacking for me. I am scared straight of addressing the issue to others within my immediate circle of friends and family that I am a cancer patient. I am better telling others that I have cancer through an anonymous source.  I am afraid of the reactions. I have always disliked attention especially per say negative. Not to say that cancer is a reflection of the negative things I  have done wrong but the disheartening predicament I am in.  I know I would get the "uplifting" verbiage from all those none cancerees, the lovely saying include 'You will be okay/fine,' 'Everything will work out,' 'How are you doing?(with compassionate glim),' and personally my favorite, 'It's only skin cancer.' I don't want to be the center of the gossip circle. I just want to be me. I want to be the same old Karen I know that is in there. The best way to describe my lack of communication with others concerning my diagnosis is my fear of  being exposed.

Source
Torgovnick, Kate. "Looking forward, looking back: TEDGlobal 2012 recap." TED Blog. TED, 29 06 2012. Web. 29 Jun. 2012. <http://blog.ted.com/>.

The Tanning Dilemma

Ever notice whenever there is a historical based Hollywood movie, the actors are not tan. They are pale. Fast forward to the present, the tan folk are portrayed as attractive and the hero or heroine. What is wrong with this picture?

Example: Historical Movie

Pop culture movie

Why is the great movie stars or famous entertainment actors of our day enable the youth and general society to tan? We endanger ourselves with our lack of respect for the solar rays, also those contraptions called tanning beds. Hopefully, more press coverage may be bestowed to our lovely disease to prevent further damage.

It angers me so much in this summer seeing the overly tan-ness of our population. Why do so many equate beauty to be tan? Somehow, a person is healthier if they are tan. I see a tan individual and I am screaming inside and going nuts because I just want to tell them the consequences of their actions. I would love to show my battle scars and tell them the death sentence they may be bestowing upon themselves.

I had a doctor appointment with the surgical oncologist. I am finally FREE. No more drainage for this person. Only 6 weeks and a day after my surgery. It took long enough. I am suppose to see him again in 6 months. Now, on to the treatment oncologist,  to get the rest finished for this cancer treatment.

Summertime

Summer is always a great time to enjoy. So many activities to do to pass the time. Picnics, weddings, cookouts, beach parties, birthdays, four wheeling, swimming, and outdoor play are things just to name a few.

 With this in mind, I have been enjoying my summer with a tube coming out of my leg. I have so many things I want to do but can't because of this lovely drainage. Luckily, it coming down. For the past three days, I have averaged less than 200 cc per day. I just need to go down to 30 cc a day to get it out of me. I guess I need to settle on the side lines and just watch.

Melanoma has brought me to a place where I need to settle down and enjoy the many things life has to offer  like water melon on a hot summer day and running through the sprinkler. I have discovered a love for children's laughter and the amazement for a good times with friends and family. Material poccessions are miniscul in comparison to the experience of time spent with the most precious of people.

I am constanltly at a point of frustration because of this diagnosis. I have seen the statistics. I have read the facts. I know the chances of survival can be small but. I enjoy and thank God for every moment He has bestowed upon me. I am frightened. I am scared. I am terrorified. I want to be the survivor. I want to see my children grow up and have children of their own. I want to grow old with my husband. I want to make a difference.

Some more Doc Appointments

I have seen 2 docs plus a nurse for examination. Its a good thing, I had the experience of childbirth to lose all my sense of dignity.

The first appointment was with the dermatologist. We waited for a very, very, very long while. I had the bright idea of asking my husband to come. We didn't think it would be that long so we also brought the kids. Obviously, that was a mistake. Two children under the age of five do not have the longest patients level. So in the end, my husband took the little ones outside and I enjoyed the doctor appointment alone.

It did go well. No additional removal of moles is always an exciting prospect.  This new dermatologist I was referred to by the oncologist was super. She was professional and seemed to be really knowledgeable in many melanoma lingo unlike some docs I have gone to. I have hence decided that I will probably continue to visit this doctor because of her great bedside manner and her impressive resume.

The afternoon appointment was with my surgeon's nurse. The surgeon was not able to attend because he had an emergency surgery to perform. His nurse is a sweetheart and really personable. I went to have them check up on my drainage.

My drainage.... this is not a pleasant experience to say the least. I was told after my second surgery I would probably have the drainage for 3 days to up to six weeks. Well, its week 4. You may draw the conclusion that I was on the later end of longevity process. I was hoping for the 3 day term. Obviously, I have been attempting to learn patients in my drainage experience. The nurse changed out the drain so hopefully, I will not drain as much. I am praying that my drainage goes down in order that I may begin my treatments. So far it is working....

The last and final appointment was with another oncologist at a different hospital system because he is covered under insurance. The first is not. Again, the wait was a little long but tolerable. No kids this time made a huge difference. They were staying at Grandma's for the day.  The hour in the exam room waiting for the doc gave me time to catch up on my sleep. When the doc did come in, it was not the doctor I had the scheduled appointment with. Puzzled, I and my husband discussed my medical history and proceeded to converse in a possible treatment plan of a clinical trial. Then, the doctor that I had the appointment with arrived and boy, did he have some spunk. He was not as professional as the first doc or as knowledgeable but he was personable.

In all, I am through with doctor appointment until this drainage is out. I will be hoping and praying that I will be able to discontinue with drainage and enjoy some of my summer.

More Doctor Appointments

I went to another doctor's appointment last Friday. This oncologist keeps on pushing Interferon towards me even though I really do not want it. I decided to do a clinical trial that either test the treatment of Interferon or Yerzoy. I hope I will be receiving that latter.
I am also going to see another oncologist for a second opinion for treatment options. The clinical trial, I am opting for, is also being conducted by the differing hospital system and this time they are covered by insurance. (I hate the whole in-network and out of network thing. )

The doc also said Yerzoy cause fertility issues and I won't be allowed to have anymore babies until 3 years from now. I am okay with this but more or less frustrated that the choice of having more is no longer mine to make. I am happy with the two wonderful children I have more but everytime I see another baby. I get those problematic fever called baby fever! I guess I just need to trust in the Lord.

Tomorrow, I have appointments with a new dermotologist and my oncology surgeon. The day after that I have an appointment with the oncologist I have a second opinion with.

  I pray my stress level goes down. I am at my breaking point. This littlest thing makes me so angry. My poor husband has to deal with my constant irriability. God give me the wisdom to do your will.

Uncertainty

Uncertainty is the frustration for melanoma. I never know how long I have. What will happen in 5 years 10 years? Will I still be here? I pray that I will see my 30th or even my 35th birthday but if the good Lord decides to take me. I will go willing. Although I have the selfish desire to witness my children become adults, I believe in God's Providence. I just want to go on living. I feel I have still so much to give.

Will I make it? This is the inevitable question. Do I have the strength, the determination, the drive, and the willpower to beat this disease? I have faith that I will. My husband definitely thinks so. He is always saying, "As long as I get another twenty years out of you, I will be happy." Though the uncertain nature of the disease makes me feel uneasy about that prospect. I feel that doubting feeling that I may not make to twenty years. 

The unpredictable nature of the game provides the realization just how precious life is. Being told at twenty five that I have cancer has changed my outlook on the daily routine of life. I am more patient and enjoying every little moment I have with my family especially my children. As the song sings on, "Gotta life like you are dying..."

 Any moment I may lose my life. A plane might fly into my home. There might be a gas leak in my house and it explodes. I get killed instantly in a car accident. There are so many things that could go wrong. Cancer in my case was the thing that went wrong. I may lose my life to this disease or I may carry on.

 Welcome to my blog about my melanoma experience. I decided that I need to let my feelings put in to words. Maybe I will sleep better at night. The following is my up to date story.

I recently had a dermatologist appointment where I was concerned about a mole on my thigh that morphed on me. The Doc took it out and told me that she would call me about it with lab results. I was thinking okay well at least I got that pesky thing out. Unfortunately, the dermatologist called me two weeks later telling me I have melanoma...

My head is telling me, "Well you have cancer now what..." I was completely at a loss at what to think. Anger, frustration, and the lack of control of what will happen next. Emotions of several kinds were whirring in my head and then I had the genius idea of reading about melanoma on Wikipedia. WOW that was genius?!

The stupidest thing you can do once you are diagnosed with any sort of disease is read about it online. I came to the conclusion that I would be dying with in the next month due to the wonderful news I just encountered. Reading the stats gave me the realization this disease kills. Let me tell you after reading, I had a sleepless night and many to follow. I just kept on thinking in my head I have two kids I want to watch grow up.

The dermatologist referred me to an oncologist which I saw the next week. He told me I need surgery... the type for those technical folk out there is wide excision  and an sentinel node biopsy. I was not really happy on this considering I had never come under the knife other than wisdom teeth being taken out. I think I was more fearful of surgery than childbirth and I have done that twice! Basically, the initial surgery was to see if the melanoma spread to my lymph nodes and to take out my remaining skin by the mole to be ensure all the melanoma is removed. 

Surgery day was surreal. I was scared and frightened and not happy on the prospect of being put under the knife. I had the procedure at brand new hospital that was just opened eight months ago. The nursing staff was wonderful. The testing was horrible to find my lymph nodes they were going to find.  I think the pain with this was worse than the aftermath of surgery. They pick you with 5 shots of some sort of radioactive agent dye to find my nodes. These shots burn. The results came back with one of my nodes having melanoma. The next method of treatment was more surgery followed by immunothearapy.

They scanned me after surgery a couple of weeks later. The PET results showed that the cancer had not spread but was still spreading at the microscopic level.

The next month I had surgery where they removed all the lymph nodes in the infected area and put drainage tube sticking out of my thigh to remove all the excess fluid from my removed glands. I had to spend overnight at the hospital. I was not too excited about the overnight stay but the doc and the hubby were insistent on having me rest.

After the surgery, I was not the best patient. I have pride issues and do not like to depend on others. It is really a point of contention because I do not like to stay still when there is always something to do at home. Eventually, I got to the point that I have to depend on others. The next week I received the results of my second surgery to be told that I had two more nodes positive but the good news was no more surgery!. 

At this point of my melanoma excitement, I have a tube sticking out of my thigh and looking forward to start treatment so that I can get this cancer out of me. The Providence of the Lord confuses me at points but I know everything will be okay!