Saturday, last day of July

Blah day.. Got up but couldn't do anything. No energy at all. Waited for Randy to come home to take me to the grocery store.

My best friends, Diane and Ted Crisman, surprised me today by stopping by to visit. It was so nice to see them. I appreciated it so much.

I have no more energy to even write anymore. So tomorrow is another day.

Ninth day of radiation

As tired as I have been the past two days, I had lots of energy today. Feel ditsy or spacey when driving. Scary. Radiation is getting a bit easier.  Went to well today. Chilled out with my meditation music.

 Went to try on wigs at We Care Wigs in Greenwood just in case I need one later. They were so nice. I loved the ones I tried on.  May have to get one just for bad hair days.

Still frustrated that I am still waiting on my medical oncologist  appointment. How can someone be that busy?  They say if my pathology report comes in, they will try to work me in.  I'm sure he'll say I need chemo. I'm that lucky.  However, I'm resisting chemo until after the wedding. I am NOT going to be bald with no eyebrows  and eyelashes for my daughters wedding !

Eighth day of Radiation

Not a bad day.  First day I think I haven't cried over something. Energy level is fair.   Radiation went okay.  Saw resident today as I am having some diffficulty swallowing, gave me a liquid medication to take before I eat.  Seemed to work. Also started the grind meat, much easier.

 Ran into another friend at the Cancer Center.  Went to the Cancer Support Community for Relaxation and Visualization group. I might be geting the hang of it.

Seventh day of Radiation

I wish I could type as slow as I feel today. Woke up tired. Did close to nothing all day.  Just no energy.   Had a massage this morning, helped alot. Relaxed me.  Radiation went very fast today. In and out in 15 minutes. I've counted the seconds the beam is on 11 to 18 seconds,six times.  My thoart is begining to get sore and having difficulty swallowing.

Web surfed several cancer sites... the best was crazysexycancer.com.  The book is also good, I'm reading it now.  I feel everyone with cancer or is concerned about their loved one should be well read  on the subject.

Seventh day of Radiation

I wish i could type as slow as I have been all day.  I got up exhausted.  Been tired all day. Did close to  nothing all day.  Radiation went much better today. They were on time. Out in 15 minutes. My thoart is beginning to get sore. Also hard to swallow. Didn't think this woudl happen so soon. Web searched a few cancer sites... the best is crazysexycancer.com

Sixth day of Radiation

Well, another day down.  Treatment was 45 min. late. Only took one valium, should have two.  Got the mask on the first time. Still terrible.  Met with Dr. McDonald afterwards.  Voice continues to be hoarse. Cough is diminishing but still a bother. 

Went to Cancer Support Comunity again with Randy this time.  Had orientation meeting.  He's agreed to go to a support group.  Hurried home to Cherie. She was still in her crate. Thank goodness. 

Tiring day.

Second week of Radiation (day 5)

This week, I changed my time to 3:30 PM.  Had a busy productive day at home before I went to treatment. Took my meds on time but treatments were running late.  Thought this might happen. Anyway, after 45 minutes, I took another Valium , so I was pretty mellow. they were able to secure the mask the first try.  Still scary. Takes alot of mental concentration to not freak out.  After treatment, I was pretty sleepy. Sort of done for the day. Me and Cherie are chilling on the couch.

A day off

Lazy day. Slept in, nice.  Spent morning with Randy, haven't really been with him much this week. He changes shifts tomorrow to days, which will be nice.  Lady from Basenji rescue is coming today to do a home visit.  Going to Bloomington afterwards with Cherie.  Another really hot day but at least the wind is blowing. Still too hot to be outdoors.  Voice is still gravelly. May stay this way from now on I  guess.

Fourth day of radiation

As Randy worked over last night, is mother went with me today.  Two trys again.  The first time they try to latch the mask in case, I freak out.  I just cannot stand it.  No one knows now awful it feels. It is suffocating and it hurts.  It is very tight, it is leaving mesh marks on my face, that do fade within two hours.  I am gettin a rub burn under my chin that remains.

I changed my treatment time to 3:30 PM next week, as Randy's work hours changed, so he can go with me. 

Went to visit my friend, Laura, today. Took Cherie with me.  So tired when we got back. Slept for an hour. I have been doing alot of reading.  Picked up quite a few brochures at the Cancer Support Community.  I hope to attend a few classes there next week.

Third day of Radiation

 Well, it only took 2 trys today to get the mask on.  You will neer know how horrible it feels.  It feels like a 50# towel strapped to your face and chest. You can't move. You can't get it off.  The Valium helps some. Woozy after, needed help to walk.

Forgot to mention, I ran into a girl from work, at the cancer center yesterday.  She looks good. Stated she really like Dr. Rushing. I can't with to have my appointment with him next month.  Can't believe it takes so long to get into these doctors. Are there taht many people with cancer? Guess so.

Went to the Cancer Support Community today. Had interview and tour. Stayed for a relaxation class.  It was good.  Very nice. Wish it wasn't so far away. I would enjoy going to classes there. 

The dog got out of her cage today. Wonder how?  Nothing happened to the house. All was fine.
One more day this week, thanks goodness.

Second day of radiation

Continue to have trouble tolerating the mask. Had to quit and go home and come back later in the morning.  Dr. gave me Valium to calm me down. It least I was able to get thru the treatment.  Met with Dr. McDonald, still not path report from Rhode Island. He stated, "it's deciding if you have a rare cancer or a VERY rare cancer." yeah for me :(   Randy was able to be with me all morning. 

My perfect little dog was so bad today.  He put her on back porch and she tore the screen totally off the door. OMG. Can't believe it !  I can't trust her now.  Went out and got her a crate for when we have to be gone, afraid she will tear other stuff up.  I still over her though.

Hoping tomorrow goes better.

First day of radiation

What a disaster.  I decided I could do this on my own.  I was wrong. I had a terrible time adjusting to the mask. It was soooo tight. I couldn't breath. I had a panic attack. Crying. Took 4 tries to finally be able to tolerate the extended time it took today. The attendants were very helpful and patient with me. They were able to cut out a section of the neck so I could breathe.  It is really tight on your face and neck. I had to really focus on breathing and relaxing to get through this. Dr. McDonald stopped in to help, asked about the pathology report, but he did not know if it was recedived yet. Maybe tomorrow.

I came straight home. So upset. Randy waited for me before he left for his new job. Nice.  Have a migraine. Went to bed and napped for 2 hours. Felt better. I really do feel like I am in this by myself. I'm not sure what I need but I need something.

Recovery

I did pretty well aqt home. Only needed occassional Ibprofens for pain.  Did have trouble turning in bed or lifting my head off pillow. Took a week before I could do it without using my hands to hold my head.  A week after surgery I saw Dr. Moore to get my stitches out. No problem. 

The big C. Yes, the tumor was malignant. I knew it was. I fort unately was able to see Dr. McDonald that day also for a consult.  He is recommending radiation. Unsure about chemotherapy, that is up to the medical oncologist.Whenever that is. They are discussing me at the tumor board today also. Interesting.

My pathology is this...it was a rare solid mass carcinosarcoma. Very very rare. Most parathyroid tumors are beingn.  The only other parathyroid cancer was noted  in 2002.  My tissue samples were sent to Rhode Island  to Dr. Ronald Dellellis (sp?) for further study.  He is a parathyroid specialist. 

I followed up with Dr. McDonald 2 weeks ago. CT's of my thoart to pelvis were done.  My mask was made, Wierd. Randy took a picture of me in it. Ask him to see it.  My radiation will begin on July 20th.  I am so upset that I have to wait 5 weeks to start this treatment. They say they want my thoart to heal more beofre being bombarded with radiation.  

I'm frustrated but what can I do. It pushes me so close to Sarah's wedding, it upsets me so much. No one understands. I don't want to look bad, I'd like to enjoy the wedding.  I don't want to ruin her wedding.  I made her promise to have the wedding whether I was there or not. Sarah agreed tearfully. I refuse to have chemotherapy until after the wedding. Together they would be a double whammy and I'd look terrible and bald!  I won't have it.

I'm trying to be strong and not cry but it is so hard at night sometimes. No one understands. I cannot talk to anyone. No one really wants to hear me. It's too upsetting for them. Tried to get into a support group but I have to be "interviewed" first. What a crock. I need support. Will try to go through the IU Simon Cancer Center tomorrow. 

Six days ago, I adopted the sweetest little dog. She is a Basenji mix, an African breed.  Her name is Cherie.  She is a caramel color with white markings.  Her eyes are golden.  She is very affectionate, rarely barks.  The Basenji purebreeds yodel, no bark. She is 2 years old and house trainied.  We both love her.  She is to be my cancer companion dog.  She will be perfect.

Tomorrow my radiation starts. I will try to document daily the process and side effects.  Good Luck, Valerie.

Catching up

I elected to have my second vocal cord injection 2 days after Xmas. Along with that I also had a septoplasty with turbinette reduction.  Meaning  he cut out the elarged tissue in my nose so I could breathe better.  My nose was almost completely cosed.  Dr. K would ask"How can you breathe?"  Of course, doctors rarely tell you the after effects of such surgeries. 

It was TERRIBLE.  The vocal injection ws no problem but the nose was so painful. It was worse the next day when he pulled out all the packing.  OMG!!.  Never never would I do this  if I'd known how awful it was.  I felt on the verge of a mirgarine for weeks.

Let me explain the vocal cord injection, also called medialization.  They inject a collagen like substance into the flaccid vocal cord to "plump" it up so the functioning vocal cord has something to close up to so you can speak.  The paralyzed vocal cord is slack. Your vocal cords open and close when you speak. I only have one working vocal cord .  I ws trying very hard to talk now causing mucel tensin dysphonia. This means I was trying to use all my neck muscles to talk.

My voice did not return as fast as with my first injection.  It was very frustrating.  Followup  with Dr. K in January now revealed an arthynoid dislocation ( this is the cartialge that holds the vocal cord).  He referred me to Dr.  Stacey Halum at IU. In April, I saw  Dr. Halum  who wanted better "pictures" of my head and neck, so MRI and CT were ordered.

Randy's dad became very ill with a return of his pancreatic cancer.  He passed on Easter, April 9th.  I was admitted to the hospital for a groin abcess on the 11th.  MRSA+.  Released the day before his funeral.  Very painful and uncomfortable.  What else is going to happen?

I was so frustrated with my voice quality, I contacted Cleveland Clinic for a second opinion. Randy and I went up there in May.  I saw Dr. Milstien, phD in speech pathology and Dr. Cabrera, ENT.  her resident flet my neck and found a lump which was confirmed  by the MRI/CT. Dr. Cabrera said the vocal issue ws not important as was this mass in my neck. I could feel the lump in the right side of my neck.  She did a needle biopsy right then.  I was upset and anxious. Very upset.

I returned to Dr. Halum, who confirmed the mass and referred me to a head and neck cancer surgeon for excison. She also ordered another needle biopsy  and Ultrasound.  This biopsy was very very painful. Took 10 samples. So terrible.  Why  can't they put a person out for these kind of procedures?  They'd think twice about it if they actually had this done to them so they knew how painful it is. Bet they'd order some anestheisa then.  So frustrating.

Saw Dr. Micheal Moore before Memorial Day.  He believes it is cancerous and needs to be removed as soon as possible.  I was able to attend my daughter's  bridal shower Memorial weekend.  Had a nice time reconnecting with the Steele side of the family. Surgery scheduled for June 9th. This was rescheduled twice. My surgery was finally performed on June 15, 2010.

Randy stayed with with my all 3 days at IU. I had a private room due to the past MRSA dx. I ended up having a central neck dissection due to large size of my tumor.  It was a solid mass tumor, golf ball size. I drain was placed in my neck. I ws in recovery for 6 hours waiting for a room. Awful. Mom and Dad were so upset. I felt bad they had been there all day and were exhausted.  Having Randy with me was so helpful.
Most of the nurses were nice. You really can't sleep in a hospital. They are always waking you up for vitals, meds, etc.   The removal of the drain ws quite painful, very wierd feeling but painful. Amazing how long it was, all packed in my neck. Ugh.  Glad to go home. 

History continued

The end of July I went to a Creative Memories  convention in Chicago.  Had a good time. Eventough I could barely whisper.  Randy was bored but a trooper.  I wanted to visit the Baha'i House of worship to pray about my surgery and to feel some comfort within its walls.  Randy had never been there. It was as I remembered. So beautiful, so peaceful.   Got home real late . Amanda got home after us. Long day, exhausted. Glad she is going to be here for my surgery.

Randy and I have had a rough 2 years. We were married February 16, 2008, after 6 years of dating. In the fall of 2008, he was diagnosed with prostate cancer. Had had proton radiation therapy January  to March of 2009. I began losing my voice at end of March 2009.

I had my total thyroidectomy on August 2009.  I was only in hospital overnight. The dressing/splint was very uncomfortable .I could not sit up, kept falling backwards.  Anyway, since I slept all day. I was awake all night. Randy did not stay with me. I kept calling him to come back but he had turned his phone off. What if the hosptial needed him?! So mad.   When I got to go home it was raining so hard. Could barely see to drive.  My folks had stayed overight at my house. They left after I got home  but they had trouble getting home to Bloomington. There was flooding in Martinsville. 

Slept for three nights on the couch, as I couldn't lay down. Afraid I would choke to death. The pain is manageable.  Dr. Krowiak says he got all the tumor and that it  was not touching the right recurrent laryngeal nerve at all, as suspected.  So now what?

Followup  with Dr. K... tumor was benign. Thank you , God.  He is still perplexed about the paralysis.  A vocal cord injection was planned for August 27th.  Done as an outpatient. Three days of vocal rest. When I could talk, it was raspy. Went back to work Labor day weekend. I can talk with some volume now.  My voice got stronger every day.

Two weeks before Xmas, my voice started to fade. This first injection was only to last 3 months, more if I was lucky.  I wasn't. I went to my appointment with Dr. K with my mind made up to ask for the permanent implant.  However, he talked me into a longer lasting injection. Susposed to last 2 years.

History

In March 2009, I began to have hoarseness after talking all day at work. I'd be better in the morning. After several weeks, the hoarseness did not get better after a night's rest. By the end of the week, I now was soft spoken and could barely whisper.

Continuing on in my "not wanting to go to the doctor" vein, I finally went to my PCP after suffering a debilitating migraine. Migraines send me to the hospital ED for a morphine "cocktail". Telling my doctor about my migraine and my hoarseness. He asked "has anyone looked down your throat?" "No", I replied. He immediately got me an appointment with an ENT the next day. Things moved quickly from then on.

The ENT did a laryngeal scope, not fun. He stated that my right vocal cord was not moving. It was paralyzed for some reason. He felt my neck and said ,"You have a lump in your thyroid". This could be pressing on the nerve causing the paralysis. Seemed reasonable. I am very practical and like things to make sense.

Because of my poor speech quality and increasing fatigue. I took FMLA from work. I work as a physical therapist , specializing in lymphedema and wound care at Columbus Regional Hospital. I love my job and being off work is my hardest struggle. I worried about my patients, leaving the other therapists in the lurch, etc.

He immediately ordered a CT scan of the mass, a fine needle biopsy (called an FNA), and an MRI. All these were done in the next 3 days. I am glad I had my daughter, Amanda with me for the FNA. It hurt like heck. I do not see why they do not knock you out for procedures like this.

I returned the the ENT on July 2, 2009. I was told the mass was probably cancer and needed to be removed ASAP. Surgery was scheduled for 2 weeks later.

After this apportionment , my husband, Randy and I decided we did not care for this ENT too well. and decided to get a second opinion. I call ed my nurse friend , Jo and she recommended Dr. Edward Krowiak's name. As luck would have it, I was able to see him the next week.

I loved Dr. Krowiak right away. He was handsome, personable and caring. A University of Illinois grad like me. He did the now routine laryngoscopy. Yes, there was a mass, yes it needed to come out. However, he explained that the tumor could definitely be pressing on the nerve and he proceeded to explain how he would spend as much time as he needed to protect the nerve from further damage. And that he would leave my 2 paratrhyroids intact if at all possible . You need the parathyroids for calcium control in your body. Surgery was scheduled for August 3, 2009.