Saw my Lung Doctor Today

  I've had so much blood drawn this month!  The second time this month, was for seeing my lung doctor today, to have my ACE levels checked.  This is down.  My calcium level has been going up all year.  January it was 9, in July 10.1, and earlier this month, it was 12.4.  I had a PET/CT scan in August just before the start of the school year.  Here are the results from that: the lymph nodes in my abdomen are better (the swelling have decreased), the lymph nodes are still swollen in under both of my arm pits and in my left groin area, and my spleen is bigger than it was  in February.   I have been getting headaches off an on since June.  I have been told to keep track of them, because people can have neurosarcoid.  I do not have any other symptoms for neurosarcoid.  He was debating on scheduling me to have an MRI on my head/brain.  As of now, I am not getting an MRI.

  I will be taking predisone for three months.  I will see this doctor on Martin Luther King Jr. day.  At that time, will talk about some kind of scan, because that is the best way to see if there are changes or not.  I am hoping that the side effects are not that bad.  One of the major side effects is gaining weight.  I have lost some weight, and do not want to gain a lot of it.

  I had to get a flu shot this afternoon, because of going on steroids.

Last Week's CT Scan's Results

  Last Friday, June 28, I had a CT scan.  I saw my oncologist this morning.  Lymph nodes and lung nodules are still they same.  They haven't shrunk or gotten bigger.  My spleen has gotten bigger.  As of now, I have a PET/CT scan scheduled for next Wednesday.  That can be cancelled due to my insurance.  My oncologist will tell them there are new symptoms due to my spleen. If the PET/CT scan is cancelled or comes up inconclusive, I will have another CT scan in October.

  My oncologist does not want to do another biopsy.  If he tries to biopsy my spleen, there will be a lot of bleeding.  The problem with this is, is that I have sarcoid.  With sarcoid symptoms (when it is active), it makes it look like the melanoma is back.  Sarcoid and Melanoma have the same symptoms. Sarcoid is an autoimmune disease and I will have it for  life.

  In three weeks, I see my lung doctor, and I will find out then, if I have to start taking steroids.  If I do, steroids are supposed to shrink the lymph nodes.  I do not want to start taking steroids, because of the side effects. 

March 12's Surgery Update

I am very sore!!!!!!!!!!!!!!!!!!  Basically from my throat ( at times), but from my breast bone down to my butt muslces hurt.  It hurts to cough. 

  I started at Endoscopy, not out-patient surgery yesterday.  I got there a little before 11:30 and was taken back a little before noon.  My port was accessed twice and got no blood return.  A second lady came over and accessed me again, with still no blood return, but it did flush, so it was good to go for the IV.  They have been told, when using a port, you do not need blood return, in order to start an IV, but did does need to flush.

I was taken to surgery a little before 1:30, right after Dad showed up.  Both nurses had to see my hole, while in the elevator.  It doesn't bother me to show off the hole.  My lung doctor started first, and did the broncoscopy and did the needle biopsy of the lymph nodes.  That came back negative for cancer.  He went down into my lungs, but could not get to do a biopsy of the nodule.  It was very small, hard to reach.  H was using some type of xray to guide him.  Then my surgeon took over and took out a few lymph nodes, and they came back negative.  But due to my history and to play it safe, he continued and took  more out.  I was in surgery for 3  hours.  I was moved to in patient recovery room because of the type of surgery I had, instead of out patient recovery room.

I had a hard time waking up.  I just wanted to sleep.  I had that issue before, I think a couple of years ago, and maybe even in 2007.  The nurses made me get out of bed around 8 to walk and we left before 8:30 pm.  Dad picked us up from out patient doors, and as soon as he turned onto Goodkirk off of Forge St, he had to pull over, so I could throw up.  I hadn't eaten in over 24 hours, and just had a bit of water on my stomach.

When I got home, I went to my dad's chair, and that is where I slept last night.  Where the incision is, it feels heavy and tight.  I am still pretty tired today.  I am taking tomorrow off to rest some more.

I see my oncologist on Monday morning and will see the surgeon on the 22nd.  I will be late to school on Monday and will be taking the 22nd off from school.

On the 25th, I will be 5 1/2 years NED.  I am praying that I still am NED.

I think this is scare #6

So far, February has been a rough month, and March will also be rough.  Last Friday (2/15) I had my CT scan with contrast.  I saw my oncologist this morning for the results.  As the title says, another scare that my cancer is back.  What did the scan say?  Lymph nodes a little worse and they are not easily accessible; small nodules in both lungs 2-7 mm in size and too small to be biopsied, and my spleen is 2 cm bigger. My blood word I had done on the 5th cam back good.  I found out today that I was diagnosed with granuloma disease two years ago.  Go to the following website to find out more information about granuloma disease: http://www.nlm.nih.gov/medlineplus/ency/article/001239.htm. From reading this, I think my brother also had granuloma disease.  According to the website, it is an inherited disease, so both of my parents are carriers.

Next Monday (2/25) I will have a Pet/CT scan.  That Friday (3/1) I will be seeing a new doctor, a Cardiothoracic surgeon in the morning and see my oncologist early that afternoon.  I googled the surgeon, and from what I read, he is to be a top notch surgeon/doctor.

Depending on what the PET/CT scan says will determine the next steps.  Biopsy? Surgery?

It seems like every year, I have a scare of some kind.  I am tired of having a scare every year.  When can I go a year without scares?

Father,
      I know you know what you are doing?  You have plans to prosper me, not to harm me.  Please give me the strength to get through this.  I also what you to be glorified during this time.  Please use me in whatever way you deem.  Your will be done on Earth as it is in Heaven.  I am not happy.  This on top of Timmy's death, and the stress of the school year seems to be too much bear.

Amen

My Day and More Test Results

After 11 this morning, I started to get ready to leave. No sub at 11:30. Still no sub at 11:45. I started to become curious and called SubFinder and nobody had accepted my job for a sub. I sent a note across the hall explaining this and she said to call the office. I did, office said the district was short 20 subs for the day. They asked if my two partners would be willing to split my kids, and they said no. Between their fools and fools, it would be disastrous for them. Told the office they said no, so they found somebody else to come up. My kids were working on their social studies assignment and were told, all had to have it done before going home. Knowing my kids, not all will have it done. I left school about 12:20 pm.

I had a 12:45 appointment with my Onc. I already knew there was no cancer in my lymph nodes. The polyp tested negative for cancer also. The stains they ran on my lymph nodes for bacteria and fungus also came back negative. My onc is curious as to what is going on since there is no cancer. He ordered blood work. I will call next week for the results and go from there. I will have CT scans of my neck, chest, abdomen, and pelvis areas on Monday, August 22. I will get the results the following Monday. My onc did say that from the test with my polyp, there were cells that were starting to change. He said I will will be given more info from the GYN next week when I see him for post-op.

My left armpit area has been bothering me all week off and on. Monday and today it was checked by the nurse, and very little fluid was taken out. The pain is due to healing...

When I left the both doctor offices, I went over to Akron U to buy my cap and gown. Since I am getting my master's degree, I could wear a cap or a hood. I did purchase both the cap and gown and brought them home. They did not have anymore hoods. They had to order one, but I did go ahead and pay for it. I am so excited about all of the good news I have received this week.

Still Cancer Free!!!!!

I stayed home from school today. My left arm and underarm is still uncomfortable. I called the doctor's office to schedule my post-op appointment and to talk a nurse about my left arm. She scheduled an appointment for me to come in this afternoon and for her to look at my underarm. About noon, the nurse called to give me the biopsy news of the lymph nodes. None of my lymph nodes have cancer in them! I am still in remission! The lab is still running tests on the lymph nodes. They want to make sure there is nothing there of any sort. It will be awhile til I get those results.

I went into the surgeon's office to see the nurse, and I wasn't there very long. She looked at my underarm and said it was slightly swollen. She removed the bandage and used a syringe to remove fluid. Barely any fluid came out. That is good. She also took the bandage off of my neck. The third bandage will be removed later this evening.

I still see my onc this Friday, and both of my post-op appointments with the other two doctors are on May 5. One at 2 pm and the other at 4 pm. I will take a half day at school. I can only lift a couple of pounds.

After seeing the nurse, mom and I went over to the school so she could carry my totebag up the stairs to my classroom. It is very heavy.

Surgery

My mom's best friend came along to sit with mom all day. We got there about 8:30, and almost after I signed in I was called back. Teena got there before us and it was good to see her before I was called back.

The nurse had to call and get a doctor's order to access my port. My bp seemed high 147 over 90. April 1, it was really low, compared to it was after school. The nurse accessed my port, and at first no blood return. I took a few deep breaths and started to turn my head to the left, and there was blood return. The IV was started. My mom, dad and Pastor Bob (pastor of my parent's church) came back. That was around 9:30am. Pastor Bob prayed with us. I was taken to OR around 10 am.

I saw both the anthesologist and Dr. Williams, the surgeon before hand. I told him, about the enlarged area on the right side of my neck, that was discovered during my massage on Monday. He'd wish I had called him, instead of Dr. Patel. I had the area from my neck, lymph nodes from under my left arm and left pelvic area removed. Also removed was the polyp. Both doctors came out to talk to my parents afterwards. Mom said they seemed upbeat, and didn't think anything looked cancerous. What was removed from my neck was just fatty tissue. I was moved to recovery about 1 pm. I ended up in surgery about 3 hours, longer than they expected.

Sometime after 3 I started to become more awake. At first most of the paid was under my left arm and my throat. My throat still hurts, and it is due to the tube that was put down my throat for surgery. Underneath my left arm is sore.

Left about 4 pm and got home around 5 pm. I have two post-op appointments in two weeks.

Saw the Surgeon

I saw the surgeon this afternoon. He looked at the PET scan report. He felt for lymph nodes under my left arm and my right pelvic area. First he started talking about removing lymph nodes from under my left arm and my right pelvic area, but according to the PET scan, there is more activity in the left pelvic area. (I do have lymph nodes in my right pelvic area). So lymph nodes will be removed from the left pelvic area and from under my left arm.

No surgery date has been scheduled. His office has to talk to the GYN to coordinate with him, so that both procedures can occur on the same day at about the same time. I will call the surgeon's office Monday afternoon, to see what has been scheduled. I do not know if the LEEP procedure wills till be April 15 or not.

Pathology Report

I had two doctor appointments this morning, one at 9 am and the other at 9:45 am. I was late to the second one. Which is okay, since I have to wait longer in the waiting room to see the doctor. I saw the onc first. He shared some good news with us. He'd thought we had already heard the news. My lymph nodes came back clear! No cancer was found in them. The pathologist did see some bengin stuff looking like sarcoid. (The doctor I saw for second opinion back in August said I might have sarcoid.) The onc wanted blood drawn to be tested for sarcoid. I will find out in a couple of days if I have sarcoid. I am not completely sure what it is. Sarcoid can be found anywhere in the body. By doing immunotherapy, the sarcoid can become active, and that is something to watch for. One symptom of sarcoid is a nagging cough, which I have had since I was a kid. As of now, the high dose of the interferon (immunotherapy) is scheduleded to start Monday, October 22. Each treatment will last about 3 hours. I will go to the 7th floor of City Hospital to recieve my treatment. The nurse went over the side effects with us this morning. She is going to fax us the schedule for treatments and office visits tomorrow.

My second appointment was to see the surgeon and the resident. My incision is looking good. Both of my parents have seen it. It is normal to have redness arond the drain sites. I showed both the surgeon and the resident my blisters. Once I have healed from the blisters, I have to try the stocking again, and if it is still way too tight and causing problems, then I have to be remeasured for it. I saw some redness above my right heal this afternoon. So that means all of the ace bandages are off of my leg. My leg is supposed to be wrapped, but if I want the sores to heal, I can't have them wrapped.

The resident decided to leave the drains in for at least another week. She said I am still draining too much. For the drains to come out, I am to only drain 30cc (30mL) total for both drains per day. I drain between 60cc-100+cc per day.

Mom, Dad, and myself went out to lunch at Spaghetti Warehouse today. I called it a celebration lunch.

Holy Father, thank you for answering my prayer the way I wanted it answered. You know I didnt' want this surgery, but if I didnt' have it, I'd be wondering if any lymph nodes would be cancerous or not. Thank you for no more surgeries. Lord, if I do have sarcoid, please do not let it become an issue.

Oh, What Fun We Had!

The fun started Tuesday morning. (If you haven't figured it out yet, I am being sarcastic.) I was taken back before 8 am. The nurse started pre-op vitals and stuff. She had to draw blood this time, and glory be! my veins co-operated and she got 3 vials of blood. I was praising God. Then she goes to start an IV in the back of my left hand. She got the needle in, but my vein decided to roll. She stopped right there and then. The nurse called down to the operating room to tell them they would have to start an IV. God chose to answer that prayer, but saying no, to my veins not co-operating.

I was taken down to the operating room a little before 9 am. I hugged my parents bye. In the operating room, I was given warm blankets and warm towels. These two nurses tried, right elbow, left hand, right hand, left foot. The anthesologist came in, he tried the right side of my neck. Before trying to start an IV, they would give me a shot of numbing medicine. He got an iv started on the left side of my neck. You never want an iv in your neck! It hurts! You can not hold up your head very well. Six days later, I am still sore.

I was taken to recovery around 1 pm. The surgeon took out the superfluous lymph nodes, just underneath the skin. I was given 2 drains. My mom has to dump the drain bulbs 3 times a day. They do not drain much.

Taken up to my hospital room around 8pm, little later. That bed was so uncomfortable! My back hurt! I couldn't move very well to get comfortable. I couldn't even move the bed up or down by the buttons until Thursday. I was admitted to the hospital, because the surgeon wanted to try to get my port placement moved up. I was originally scheduled for the port placement, October 3.

Had quite a few visitors on Wednesday. I kept asking the nurses Wednesday evening, for the Indians score, they didn't know. We didn't' pay to turn on the tv.

I got my port placed Thursday afternoon, the last one, by Special Procedures. The port is on my right side, in the upper chest area. That area is sore, do have a bit of pain there.

What else hurts? My neck is still sore. I have blisters just behind my right knee, due to the ace bandages wrapped too tightly around my knee. Thursday, my stocking was put on my leg, not completely or correctly, so that no pressure would be put onto my incision in the groin. The stocking caused blisters in two more areas. Those areas are a little below my two drains. It hurts to stand up, sit down. Sometimes it is uncomfortable in the recliner due to the blisters. By one of the drain areas, I feel a pulling sensation.

I see both of my doctors Wednesday morning. But it feels so good to be home! Thank you Lord, the surgery went well.

LND/Port/Venting

My LND (lymph node disection) is next Tuesday, September 25 at 9am. I will not be having the port implanted that day. I will now be getting the port on Wednesday, October 3 in the morning. I have to have a blood test either on October 1 or 2. I had to end up going through my onc. to get my port.

I worked 4 days this week, with a total of 9 days for this two week pay period that ends today. I hope to work on Monday of next week. I will then go into the system to make myself unavailable for the rest of the week. Somehow, my mom has it stuck in her head, that I will be able to work the following week. I keep telling her that I won't be able to, as long as I have a drain in me. She will not listen. She thinks I will only have the drain for a week. I say I will have it for at least 2 weeks. I keep telling her, she is stuck at the house with me for two weeks, because I will need her help in the changing and cleaning of whatever needs to be done, because of the drain.

We'll see.

My Decision

Saw a Melanoma Doctor up at Cleveland Hospitals this afternoon. He agrees that I should do the recommended treatment. So, I am. I am going to have more surgery. I will be having the lymph node disection. I should hopefully find out next week when. Mom and I are going to go a certain pharmacy tomorrow, so I can be measured for a pressurized stocking. I will have to wear this stocking for the rest of my life. I will have problems with swelling for the rest of my life.

I also want to have a port implanted into me as well. I am going to call Dr. Patel's office tomorrow, to ask about a general surgeon to see about him putting into me. I would prefer it to be done the same time, the lymph node disection is going on, so that I won't have to heal from two separate surgeries.

Once the lymph nodes are taken out, then they will be tested for cancer. If they come back positive, then I would be at Stage 3b, instead of Stage 3a. I might even have to do radiation or something like that before doing immunotherapy.

Another thing found either on the scans or from pathology were granulomas. That has something to do with Sarcoid. I will have to see a pulmonary doctor next year about that. If I have Sarcoid, that would explain the cough I have had since I was a kid. The immunotherapy can cause havic on the sarcoid, and if that would become worse, then the immunotherapy would be stopped.

As of right now, I have a 30% chance of a new case of melanoma within the next three years. If there is cancer in my other lymph nodes, then that percentage goes up.

I was told that there was at least two pockets of microscopic cancer in the lymph node that was taken out in June. My melanoma was ulcerated, because it was bleeding off and on since January of this year. Dr. Burns removed 3.25 mm of the melanoma tumor in May. Another 1.2 mm was removed back in June.

I am also going to have to start seeing a dermatologist, and will be seeing this person for the rest of my life.

How do I feel about this? I can't really say. I have been feeling a little detached from this all. I'm glad the decision has been made. I appreciate how this doctor really explained things to us. I am praying that God will use all that I am going through to feed somebody else.