IT'S ALIEN AND SCARY AND DARK

You know, when you have cancer, you walk in some sort of different space. You can be walking beside someone, but it's not like you're really there, it's like you're existing....in a different reality. I don't want to walk that alternate reality. Never. Never. It's alien and scary and dark.

THIRD BIOPSY IS POSITIVE - I HAVE CANCER

I was parked in the Walmart parking lot about to pick up a few groceries when my phone rang.  I was expecting a call from my ENT doctor with results of the last biopsy.  Here's a video of what I felt.

https://youtu.be/y-7WeAQxjwk




I knew it all along but it took 3 biopsies to determine it was cancer of my tongue and lymph nodes. Now I can finally be referred to an Oncologist and begin treatment after having the tongue symptoms for 10 months and the swollen lymph node for 4 months - and removal of my left tonsil in between.


Here is the link to the beginning of my blog.

http://mythroatcancerdiary.blogspot.com/2017/02/found-lump-on-neck.html

CORE NEEDLE BIOPSY DONE - GLAD THAT'S OVER

Went to Thibodaux Regional Medical Center this morning at 6:00am for an 8:00am Core Needle Biopsy - Ultra Sound guided.  My neighbors Evelyn and her husband Robert drove me there. 

Was taken in right away and put on a bed in one of the outpatient rooms.  Blood work taken.  Vitals taken and my blood pressure was 225/85.  They took my pressure many times throughout my stay.  At exactly 8:00 I was taken in for the biopsy.  The actual biopsy took about 10 minutes but I was in the room for about an hour.

Dr. Arthurs was very good at explaining the procedure and answered all my questions.  I watched the monitor and could see what he was doing with the needle.  He showed me how the center of the node was necrotic and filled with fluid.  Said he would be taking the sample from around the edges of the node.  Each time he snipped a sample he looked at it and said it was good.  He took 3 samples and the last one was for cultures.  I told him how concerned I was about the node pressing on the carotid artery and he showed me the carotid and the jugular and he assured me he would stay away from them.

I asked what the significance of the fluid was and he said that this is something he usually sees with cancer.  I was almost relieved.  That means I can get a diagnosis and finally begin treatment.   I asked what would happen if it came back negative and he said he would suggest removal of the lymph node so it could be chopped up and they would eventually find out what it is.  

I told him about the referral to the Rheumatologist next week and he said that they would do a whole lot of tests that may not be necessary and to hold off on the appointment till I find out the results of this biopsy.  I was glad to hear that, as I have no symptoms of an autoimmune disease except for a positive ANA test.  That's when he told me that he is also positive for ANA and he has nothing.

They kept me in a recovery room on a stretcher for about 45 minutes to continue to monitor my high blood pressure and to check for any bleeding.  Then my neighbor Evelyn drove me home.

Received a call from my family doctor and was told that my Thyroid blood test came back normal.  That's good news.  One less thing to rule out.  Now I just have to wait for the results of the biopsy.  Waiting is so hard.

CHEST X-RAY AND BLOOD WORK

Had appointment with my family doctor Haydel today.  Discussed many theories as to what would cause the ulcer on the base of my tongue.  Reviewed my records from the ENT doctor.  I pointed out that the CT scan initially done shows I have a nodule on the right side of my thyroid.  Dr. Haydel ordered blood work to check that out.  Will call me in a day or so with results.

Also discussed the possibility of  Oral Tuberculosis.  He ordered a chest x-ray which was clear.  So I guess that theory is out.

He agrees that the next step is the Core Needle Biopsy to be done on April 26th in Thibodaux.  He assured me that they were going to do cultures and find out exactly what is in the node.  I sure hope so because cultures were not done on the tongue biopsy performed by the ENT doctor.

Then next he suggested the colonoscopy with Dr. Pellegrin due to the blood in my stool a couple of months ago.  Crohn's Disease can cause ulcers on the tongue.  Then possibly Dr. Sall for another biopsy of the tongue with cultures.  And finally to see an Infectious Disease doctor.

I told him about food sticking in my throat on the ulcer and asked if Gaviscon liquid would help to numb the ulcer and he said yes.  It does not hurt but seems to swell up with certain foods.

I also told him that I discontinued taking my diabetic medication Metformin because my blood sugar numbers were really low and I feel shaky when they are low.  My fasting blood sugar numbers were always high around 125 and would even out during the day.  For the last two weeks my fasting numbers are in the 90s and once was 87.  It was hard to keep it above 100 even after a meal.  It seems I am reverting back to Hypoglycemia which I had for 20 years before converting to diabetes.  He made no suggestions as to why this is happening.

I feel a sense of accomplishment after today.  My questions answered and taking action of some sort to diagnosis the condition I have makes me feel like something is being done.

I NAMED IT

I have decided to give the ulcer growing on the base of my tongue a name.  If it is gong to live in me for this long (5 months now) I think we can be on a first name basis.  Instead of always referring to it as the growth or the ulcer it now has a name.

Sarracenia - (pronounced "sara seen ya" named after a carnivorous eating plant found in the south eastern states.  What an appropriate name for a growth that eats away at the flesh of this Cajun lady.

One day I hope to call it "see ya sarra" as it is eradicated from my tongue and lives in me no more.

ANOTHER LYMPH NODE BIOPSY - MY THIRD

Dr. Beyer's Clinic called today to inform me of my appointment at Thibodaux Regional Medical Center on April 26th for the Core Needle Biopsy of my lymph node.  I am to be there at 6:00am and the procedure will be at 8:00am.  Possible blood work and paper work to be completed prior to procedure.

I called the hospital and asked if I could do the pre-admit stuff before the day of procedure and the person I spoke with said no.  I guess they do things differently there.  I was able to do that here at our hospital for the last biopsy.

Dr. Beyer called me later and explained why I am being sent to Thibodaux instead of our hospital here in Houma.  He said that there is only one doctor in our whole region who can or will perform this procedure.  His name is Dr. Arthurs, and he is at the Thibodaux hospital.

He told me that he had spoken with my family doctor Scott Haydel and knows that I have a positive TB skin test.  I was tested as a teen then again in my forties and can no longer be tested.  I have always had clean and clear x-rays.  However, I told Dr. Beyer that I read some information online about how dental problems can lead to ulcers on the tongue and swollen lymph nodes and lead to a diagnosis of TB - and he said they will be testing the lymph node sample for TB as well.  I was pleased to hear this.

I have another appointment with Dr. Haydel in 3 days and will ask for an x-ray of my chest.  I am still having pain in my lower right back.  Dr. Beyer said that was a good idea to have the x-ray.

I asked Dr. Beyer if I still needed to see the Rheumatologist in Thibodaux on May 1st and he said yes, not to miss that appointment due to the elevated numbers on my last blood work - specifically the ANA test which came back positive suggestive of autoimmune disease.  I agreed to keep the appointment.

I am having more difficulty swallowing some foods and get so fearful when this happens.  Drinking coke helps to clear my throat a little when I feel something stuck on the ulcer.  Also, when I recline on the sofa and use my cool mist humidifier it calms the ulcer down.  Sounds strange but it works and I depend on it while I'm sleeping at night as well.

I continue to take a half of a .5 Xanax at night to sleep and it helps.  I will also be taking a whole pill an hour before the procedure.  Although I know what to expect, I'm still anxious about it.  Wish it was over.

COULD IT BE TB?

April 11, 2017

Had appointment with my family doctor Scott Haydel today.  Felt so comforting to be back in friendly and familiar territory.  He had received and reviewed my reports from the ENT clinic and we discussed the procedures that had been done in the last 5 weeks.

I told him how the ENT doctor did not tell me much and that I sometimes did not know what to ask.  Told him how frustrated I have been with my care.  He asked if my biopsy had been cultured for various things to see if bacteria, viruses, or fungi have grown.  If certain microorganisms grow, more tests will be done to identify them. This helps determine the best treatment.  I said I didn't know as he did not tell me.   He said he would call the ENT doctor.

I asked that when he speaks to the ENT doctor to relate that I would like to have the next procedure done here in Houma by the Diagnostic Radiology doctors with Dr. John Steigner's office who accept my insurance and not at Thibodaux Regional Medical Center.  He said he would talk to Dr. Beyer and then call me today or tomorrow with some explanation as to why I was referred out of town.

He also told me that he was seeing a couple of other patients that were going through the same thing as I am with having no biopsy results and no diagnosis in order to be referred to the proper medical professional and receive correct treatment.  That is sad.  I have read many testimonials from cancer survivors who have experienced years of testing before they were finally diagnosed with cancer in the late stages.

I forgot to mention to him about seeing the Gastro doctor David Pellegrin on February 16th for a colonoscopy due to seeing blood in my stool a couple of days before while camping in my RV.  A small amount once then the next day a lot of bright red blood.  The procedure was scheduled for the following week but I had to cancel the appointment due to the oral surgery the ENT doctor suggested to me on February 22 and scheduled for March 6th.   I will inform him of this when he calls me.  I do want to have the colonoscopy.  It may help rule out some other type of disease I might have.  I do have problems with loose stool and diverticulosis.

I told him about the pain I am having on my left back area under my shoulder blade and he examined the area.  It is sensitive to touch and also hurts when not touched.  I just thought it was arthritis and he asked me if I was ever exposed to tuberculosis.  I informed him that I have been positive since I was a teen (but inactive) and can no longer be tested.

This was something that I had not thought about for many years.  I opened my wallet and showed him a paper given me that stated that I was positive.  That was the end of our visit.  He said he would call me later.

When I got home I did some more research on the Internet and after about an hour I came across this.

Both systemic and local factors play a role in incidence of oral lesions. Systemic factors include lowered host resistance and increased virulence of the organisms.  Local factors comprises poor oral hygiene, local trauma, chronic inflammation, tooth eruption, extraction sockets, periodontal disease, carious teeth with pulp exposure and presence of lesions like leukoplakia, dental cysts, dental abscesses, and jaw fractures. 

Any breach in the mucosal lining predisposes toward oral involvement.  Oral tuberculosis affect the gingiva, floor of the mouth, palate, lips, buccal folds, tooth sockets, and jaw bones, with the tongue being the commonest site.  Sometimes, oral ulcers may follow opalescent vesicles or nodules which may break down as a result of caseation necrosis to form an ulcer.

Ulcers apart, tubercular tongue lesions present as tuberculoma, tuberculous fissure, tubercular papilloma, diffuse glossitis, or atubercular cold abscess.  Diagnosis of tuberculosis is based on clinical findings, sputum microscopy and radiography.  Recent development of DNA probes, polymerase chain reaction assays, and liquid media now allow more sensitive and rapid diagnosis.

Oral TB lesions may be either primary or secondary in occurrence. Primary lesions are uncommon, seen in younger patients, and present as single painless ulcer with regional lymph node enlargement. The secondary lesions are common, often associated with pulmonary disease, usually present as single, indurated, irregular, painful ulcer covered by inflammatory exudates in patients of any age group but relatively more common in middle-aged and elderly patients.

Oral TB may occur at any location on the oral mucosa, but the tongue is most commonly affected. Other sites include the palate, lips, buccal mucosa, gingiva, palatine tonsil, and floor of the mouth. Salivary glands, tonsils, and uvula are also frequently involved. Primary oral TB can be present as painless ulcers of long duration and enlargement of the regional lymph nodes.

TB of the oral cavity frequently simulates cancerous lesions and others like traumatic ulcers, aphthous ulcers, actinomycosis, syphilitic ulcer, or Wegener's granuloma.   The chronic indurated ulcer has to be carefully distinguished from a carcinoma, as with other TB lesions of head and neck, they can resemble each other and frequently coexist.

The diagnosis of pulmonary tuberculosis is confirmed both microscopically and radiographically and the ulcer on the tongue can be concluded as a tuberculous ulcer secondary to pulmonary tuberculosis. The patient can be prescribed antituberculosis therapy (ATT) consisting of isoniazid (300mg), ethambutol (1000mg), pyrazinamide (1500mg) and rifampicin (600mg).

Administration of standard antitubercular therapy, with antibiotics such as isoniazide, rifampicin, pyrazinamide, and ethambutol for six months, is essential for the complete eradication of tubercular lesions.

This is something I will discuss with my family doctor.  It does make sense to me that this all started when I was having dental work done back in July of 2016.   It explains alot.

CORE NEEDLE BIOPSY TO BE DONE NEXT

April 10, 2017

Had a dental appointment today.  I have a tooth that is very sensitive to cold and  heat.  They took x-rays and did a cold test on two of my bottom teeth and said one was a dead tooth and the other would eventually be the same.  Suggested two root canals.  Gave me a prescription for antibiotics to take if it starts to become painful prior to the next appointment for the root canal.  I have been on antibiotics on and off for 8 months now.  Just finished the last round a few days ago.

When I got to the desk to pay for the visit I was told it would be over $2200.  I made the decision to have only the one tooth worked on and paid $1200 and left.  Once home I transferred some funds from my savings to my checking in order to pay for all of this medical care that's really hitting me hard.  My appointment is for May 15th at 1:00pm.

While at the drive up window at the bank today my phone rang and it was Dr. Beyer.  I was very surprised that he personally called me.  He explained that he was unable to refer me to Dr. Mary Eschete the Infectious Disease doctor, as I had requested, because he does not have a diagnosis to give her.  

He spoke with Dr. Saal the Oral Surgeon and he advised to have a different kind of biopsy done on my lymph node.  It is called a Core Needle Biopsy which provides significantly more information than the two Fine Needle Aspirations I had done, as it obtains much more tissue for the pathologist to evaluate.  It is to be done at Thibodaux General Hospital in Thibodaux.  I asked for the doctor's name and he said he didn't know yet and that Andrea - the surgery scheduler - would call the hospital to make the appointment and then let me know all information. 

He spoke again of other options like removal of the lymph node and another biopsy of the tongue but said that he would rather go with a less radical procedure for now.  So after a while, I agreed with him and said I would like to go along with his direction in my care.  I spoke a bit about the discomfort I'm having with the ulcer as food is getting stuck in my throat and I have to drink lots of fluids when I eat.

I told him how upsetting it was for me lately to try to decide which doctor to see first, the Oral Surgeon, the Rheumatologist, or the Infectious Disease doctor - as well as trying to find someone who would accept my Humana Insurance.  I was so relieved that he was making a decision for me and fought back the tears.  I kind of felt that he had abandoned me when he referred me to so many other doctors at our last visit.

After this conversation and I had time to think about everything that was said, I think maybe he is starting to think it is what I think it is and is doing what he can to get that biopsy sample to come back positive so I can get to an Oncologist and begin treatment.  Maybe this new procedure will give us more information and we can move on from there.    

ULTRA SOUND NEEDLE BIOPSY RESULTS - DAY 31

Dr. Beyer asked about the biopsy procedure and if I was still taking the Bactrim.  I told him I had 5 pills left to take.  He explained that the antibiotic should be healing the ulcer.  However, there is no change and it is bothering me more and more.  Does that mean that it is viral or fungal and not bacterial?  

I was anxious to know the results of the needle biopsy so we got to that next.  I was emotionally prepared for the worst because that would at least answer my questions about what is wrong with me.  I should have been elated when the ENT doctor informed me that the biopsy showed no cancer but only infection.  However, I felt more confused and deflated.

What are we going to do about the ulcer on my tongue?  I asked if I could be sent to an Oncologist and he said they would not accept the referral without a diagnosis.  I asked about another biopsy of my tongue and that's when he said he would refer me elsewhere.

Dr. Beyer first suggested sending me to a Head and Neck specialist in New Orleans at Ochsner Hospital.  I asked if there were someone locally that I could see first.  So now I'm am being sent to an Oral Surgeon (Dr. Chris Saal) in Houma and a Rheumatologist (Dr. Luis Espinoza) in Thibodaux.  (Later found that Dr. Mary Eschete is an Infectious Disease specialist at Chabert Medical Center in Houma. Called Dr. Beyer's office and requested I be referred to her.)

I asked a lot of questions and we talked for a good while.  He said he had consulted with his colleague Dr. Simon who had similar cases and the only thing he could suggest is to keep doing a biopsy till something shows up.  He said he would also consult with Dr. Saal.  

No further appointment was made with Dr. Beyer's ENT office.  On my way out I asked that he send my family doctor Scott Haydel my records.  I paid my $50 copayment and left.  They will be calling me with appointment times for these other doctors in a few days.  I checked the internet and Dr. Saal does accept my Humana insurance as does Dr. Eschete.  That's a relief.

I have no words to express how I feel at this moment - except maybe confused and scared.                

ULTRA SOUND NEEDLE BIOPSY - DAY - 29

My neighbor Evelyn took me to my hospital appointment at TGMC's Radiology Department.  It was good to have someone to talk to while waiting.  I really appreciate her offering to help.  It means a lot to me.  

I paid my copayment of $224.44 which consisted of a discount due to paying on the day of procedure.  That was nice.  And within minutes I was called in for the biopsy.  

I was so anxious about this procedure but it wasn't as bad as I thought it would be.  The 3 technicians in the Radiology Department were the greatest.  They talked to me the whole time telling me exactly what to expect.  The Radiologist  Dr. Prejean was very easy on the eyes and very comforting as he informed me of every step of the procedure as he was doing it.  The Lidocain deadened the area and I only felt the biopsy needle once.

I looked at the monitor the whole time and saw the lump in the lymph node and also the needle as it took the many specimens.  They took a break and let the workers make the slides and determine if they were good to go without doing another round of needle picks.  Luckily they were good and the procedure was complete.  It was only a matter of minutes - maybe less than 15 - that the needle was used.  The rest of the time (less than an hour) was prior to that when the Ultra Sound Tech Julie took many images of my neck and then waiting to see if the slides were sufficient.  

I was pretty calm throughout and felt great relief when it was over.  I should have the results at my next ENT doctor's appointment in two days.

Fear of the unknown is a terrible thing.  I woke this morning at 4:30am and my hands were shaking.  I didn't want to take any Xanax as I was told to wait till noon to take the pill.  So I tried to eat but had no appetite.  I checked my blood sugar and it was 97.  It is never that low on fasting and I had the shakes pretty bad so I ate some bread and had some hot chocolate.  Later I had scrambled eggs and toast.  Checked my blood sugar again and it was normal.  

At noon I took a .5mg of Xanax which did help a great deal.  Now that I have been through it I would  not be as anxious if I had to go through it again.

I have much confidence that these results will put my mind at ease as to exactly what is wrong with me.  I just wish it would have been done the first time.  Looking forward to treatment - no matter what kind - as long as I get things taken care of.  The growth on my tongue seems to be growing as I have a little bit more trouble swallowing food, like meat for instance.

Going to take a nap now.

PROCEDURE APPOINTMENT CHANGED

TGMC called to inform me that I am to show up at 12:30 instead of 7:30 on April 3rd.  I also do not go to the out patient clinic but report to the Radiology Department at the hospital.  And I do not have to be fasting.

The nurse was very nice and informative and explained in detail exactly what my procedure will be like.  It will take about an hour or so for all of the Ultra Sound images and slides to be made as well as the needle biopsy.  I told her I was going to take a Xanax and she said that was fine.  They would have given me a Valium in the out patient clinic so that is why I don't have to go there.

I also received a call from the billing department and they wanted to know if I would be paying the copayment at the time of procedure and I said yes.  So they will give me a discount and my cost will only be $249.

Then got a call from my family doctor Scott Haydel's nurse who wanted to know how I was doing.  She said that they have not received any paperwork from the ENT doctor and was curious as to my treatment.

I told her what I had been through these last few weeks and that I was thinking about going in to see Dr. Scott to tell him how concerned I am about my treatment.  She agreed that I should.

I'm still researching and reading a lot online about enlarged lymph nodes, tongue ulcers, autoimmune diseases, and cancer.

The ulcer on my tongue is bothering me more and more every day.