Hi VirgoMom,

My infusion today-- was an Eight hour day in the hospital. Everything went fine, but just lengthy. Immune Globulin intravenous is what I receive every 28 days.
Very expensive ( 9,500 - 12,000, every 28 days) and it's very necessary to keep me alive.

Yes, my specific immune deficiency carries a serious risk of Malignancies, . My primary Immune deficiency (PIDD) I called Common Variable Immune Deficiency (CVID).
The cancers most often associated with it are Lymphomas (blood cancers) and Gastric cancer. Not Head & Neck cancer ( as I have).

I had peptic duodenal Ulcers, as a 9 year old kid!! Yeah, and it took months of testing to find them, because kids that are normally don't have them.
I also had mouth sores, Thrush, ....sores were slow to heal. ...
Oral Lichen Planus, biopsied and diagnosed. Long standing problem with it. My dermatologist tried several medicines to control it-- like Plaquenil ( for 8 years!!) It's an anti-malarial drug...

My cancer treatment is n part dictated by my immune deficiency--- my Medical Oncologist said No Chemo for you, Crystal.
And noe, she is scared to try Immunotherapy in me. She said it could be very dangerous because it might attack my own organs...she said we have never tried it in someone who is genetically immune deficient.

By the way, I am at the #1 Comprehensive Cancer Center in the entire state of North Carolina. It is #1, in this state.
Not only that, the Head & Neck cancer program here, is #13 in the Nation.
My surgeon, whom I've been with since I came here in Pediatrics 26+ years ago-- is "One of America's Top Cancer Doctors, One of America's Top Curing Cancer Doctors" and he is nationally recognized in Microvascular Reconstruction ( My first surgery), and in the complex Skull Base surgery ( which one of my doctors told me last week, is next for me).

About the 4 rounds of antibiotics, leading up to my crash -- it's common for immune deficient people to need a couple rounds......But yeah, I was admitted by my internist.. They tried to convince me to by ambulance and I refused. I drove myself to emergency room....

64 pounds--- VM, my diagnosis is Severe Protein Calorie Malnutrition.
Cachexia. Directly caused by my head & neck cancer.
I didn't get weighed today in the hospital but I think I am 76 pounds right now.

Are you on a feeding tube? Or did you have one during treatments?
Mine was necessary!! I have no ability to eat...so, no choice in the matter.
You asked me if I have cold body temp? Yes, winter is hard on me!
A new nurse today took my temp and the alarm went off-- it was 95.6. Which is technically hypothermia!
My average is ,97.1 which is fine.

Don't let other people get to you, VirgoMom. I have experienced loss of "friends"..... Many disapoeared, others just never responded at all when I told them of my cancer.
Ha! Let them go.

You just have to find a new tribe....people who Know Where you've Been, what you have gone through thus far.
Because I have been with this medical center for 26+ years-- I have many True friends there. They know me.

I have to carry my feeding backpack with me everywhere... So, I am Seen!! But many people in public are understanding.
Regardless , I am Out There! I don't hide...

Crystal
PS Wednesday my head & neck surgeon is scoping me again, to look at this new bleeding mass in my hypopharynx, which pathology said is pre-malignant . We are especially concerned because my last recurrence Base Of Tongue, had deep Positive Margins which extended down throat to supraglottic larynx.
He will be deciding when to do next biopsy of it.
6 days after that, I have another esophageal dilation, on April 9.
Yeah, I get tired!