Day 3

Chris here - I need to apologize to everyone.

My head has not been in a good space and I'm sorry. I will try to be better.

We are getting ready to go to clinic and get Ann's drain removed. From there, absent complications we are headed back to home and cats.

- Posted using BlogPress from my iPhone

Location:MD Anderson Cancer Center

Day 1

I am resetting the clock back from what ever it was post the last BMT, back to zero.

Here is what I know:
1)  The cancer in Ann's neck did not come from her tonsil.
2)  The cancer in Ann's neck blew holes in several of her lymph nodes.
3)  The cancer in Ann's neck had grown to a large matted clump that encased several of her nodes on the right side of her neck.
4)  The cancer in Ann's neck covered and area from the midline of her chin to behind her right ear.
5)  The surgery team nearly aborted the procedure when they were confronted with this.
6)  The cancer in Ann's neck did not show up on her PET scan.
7)  The cancer in Ann's neck is the same group of tumor cells that was cut off of her tongue over a year ago.
8)  The procedure was supposed to be 2.5 hours long, but the surgical team needed twice that long to debride the tumor.
9)  Ann lost some muscle in her neck and part of her jugular vein.
10)  ...
11)  This situation is a whole lot more serious and we ever imagined.

Prognosis is about 20% or less.  Treatment plan is radiation and chemo with scans very 2 months.


I promised I would never leave her and I won't. Not ever.  But I don't know what to do.

Hot Tonsil

Chris here - 

I haven't blogged in a long time - and frankly I've enjoyed it.  The activity on this blog is in direct inverse proportion to Ann's health.  So less blogging means no cancer.  Well until last week that is.

Dr. G, Ann's Otolaryngologist at MDA (who also performed the surgery on her tongue) called her the other day and gave her the run down on the PET scan results.  Basically there are 3 hot spot nodes that look enlarged (1.2cm, 1.5cm and 1.1cm) in the right side of her throat.  They all vary between levels 2 to 5, but I will spare you the amateur anatomy lesson on the exact placement of the nodes, just that they are all near the jaw line or jugular.

The surprise came when she noted that Ann's right tonsil is also "hot" on the PET scan.  So it looks like we may (may) not be dealing with a recurrence of the tongue lesion from more than a year and a half ago.  This could be something "new" that originated in the tonsil.

Considering the timeline of this thing is about 6 weeks and it's exploded into the lymphatic system this makes sense.  6 weeks ago Ann was at MDA and believe me when Dr. K does an exam she palpates Ann's nodes throughly, not forgetting that Ann's original leukemia presented as a reactive node.  During that visit there were no enlarged nodes, jump forward a few weeks and Ann notices one at breakfast and calls Dr. B at Mary Bird Perkins.  And then last week we have a reading of squamous cells detected in the needle biopsy done two weeks ago.

My working theory is that this is a realtively young disease that originated in her right tonsil.  The tonsil is the gateway to the lymphatic system so it has been able to roam freely from the origin source to several of the nodes.

What we don't know at this point is if the cancer is HPV positive.  Since Ann is immune suppressed I would guess that there is a decent chance that it is.  What little information I have been able to absorb from journals is that HPV positive tumors of this type tend to be smaller tumors with more lymphatic activity.  Which sounds bad, but actually has a more favorable outcome attached to it.

Tuesday we are in appointments with Dr. G and the rest of the MDA team and I expect we will know more.

In the meantime the Light of my Life is doing her best to age me prematurely by another 20 years.  This morning started with phlegm in her throat which brought on vomiting.  Later in the day we stopped by a friend's birthday party for her kids and dropped off presents.  After about 40 minutes there in baking conditions (very hot today) Ann fainted and just about split her skull on a door frame. Friends jumped in and made sure Ann was taken care of. We're very fortunate to have such amazing people in our lives.


If you have read our blog for the last couple of years I want to say first " thank you".  We have drawn immeasurable support from the comments and contacts we have made through our efforts.  Second, I feel I owe everyone an apology that we have to ask you to go through one more round with us.

It's Cancer

My doctor called me with the biopsy results yesterday. It came back positive for squamous cell carcinoma.

As a side note, I saw my transplant team at MD Anderson on Monday and had a CT scan out of an abundance of caution and in order to give my transplant doctor the opportunity to examine the nodes in question.

My local oncologist has been amazing throughout this process and I can't say enough about him. He's been in contact with my doctors at MDA--who are also fabulous in their own right. My head and neck surgeon's team has organized my pre-op appointments. I need to have a PET scan to see if the cancer is any where other than my neck. Then I need to have my heart checked out to see if I'm healthy enough for surgery and treatment. There will be X-rays and I'll need to be cleared by internal medicine. For good measure, I get to see my dermatologist for my annual check-up the same day. (It's been on the books for a year.)

This all kicks off on 5/22. If I'm cleared, I'll meet with my surgeon on 5/27 and surgery will take place the following day.

Chris or I will update as we get news.

An Abundance of Caution

When I contacted my local oncologist 2 weeks ago, it was out of an abundance of caution.

When he prescribed antibiotics it was out of an abundance of caution.

When I returned to see my doctor after a week, it was out of compliance. He wanted to see how I'd faired on antibiotics. My throat was no longer red, but I still had small lymph nodes in my neck that were palpable.

For the record: I never had a sore throat. No fever or  cough. Had my doctor not told me that the right side of my throat was red, I never would have known anything was amiss there.

Dr. B. sent me straight in for a CT scan with IV contrast.

The results came in the following day. Inconclusive. Multiple, small nodes were present on the right side of my neck. My doctor scheduled a biopsy for Friday.

The radiologist performing the biopsy had a few problems getting samples from my nodes. The needle kept getting lost on the ultrasound screen, so he had to try a variety of larger gauges. The node he was after was 2 cm down in my neck, next to my carotid artery. The needles kept bouncing off of the node and sliding sideways.

This procedure is performed with a little lidocaine injected near the biopsy site. It's not the most comfortable experience.

After several attempts, the doctor managed to get some samples. I should know the results by midweek.

In the midst of all of this, I contacted my transplant team at MD Anderson. They've scheduled me for a CT scan on Monday. I'll see my transplant doctor a few hours later. It's a matter of caution. No one is saying it's cancer. Until I've been seen by all the doctors who want to see me, I won't know what we're dealing with.

At this point, it may be a mystery infection that I can't shake, or it could be squamous cell carcinoma. We don't know.

What's new

Last week, my neck started to feel sore on one side. Of course it was the side that presented with swollen lymph nodes before each diagnosis of blood cancer. I didn't feel sick. I wasn't running fever. Besides my normal daily issue with allergies, and adrenal insufficiency not withstanding, I felt ok. When I pressed on my neck, I could feel a swollen lymph node.

I called my local oncologist that morning. He saw me the same day. Dr. B. confirmed that I had swollen lymph nodes on the right side of my neck. The difference between this visit and my very first encounter with Dr. B. was that this set of swollen lymph nodes were tender and my blood work was in line with my blood work from 2 weeks earlier.

After a thorough examination, he told me that my throat was red on the same side as the tender lymph nodes. He prescribed a 10 day course of antibiotics. I'm on day 5 and the lymph nodes are smaller. I have a follow-up appointment next week.