Here now are some practical things I can share regarding my particular lentiginous melanoma cancer and immune therapy. I was diagnosed through a biopsy (some 25 yrs. ago) that I had psoriasis, an autoimmune disorder.

I am finding over the past two weeks that I’m having an autoimmune flare up on my scalp. I haven’t had one this intense for long over a year. Pain pricks and intense itching on my scalp. Also, the psoriasis on my face and upper body is also going through a flare-up.

I was informed, after the first immunotherapy treatment that I had been administered a steroid to lower the immune reaction. I don’t know if this autoimmune flareup is related to the immunotherapy drugs, or the steroid which was injected at the time of the treatment, but is no longer affecting my immune system (which is overstimulated).

“Brain fog” (ie. Mental confusion, inability to carry out basic procedures in my daily life, a daunting feeling that I can’t handle this task, “I can’t do this” not being able to organize even my basic to do list. Not being able to focus on priorities that need to be done; then, not having the “umph”  to do them. I feel like the person inhabiting my body right now is not me!) How long will this last? If it’s going to be permanent, I don’t know if I want to end my life living with a dysfunctional stranger!

Fatigue: not having the strength to do even basic things (like going to the bathroom when it’s really bad, or doing basic chores around the house, when it’s present but not so intense). I find myself out breath for no reason. I plod along, instead of walking. If I manage to do a couple of things, I feel exhausted and need to stop and rest. Then I ask myself: “How much should I be pushing myself to function?”  My body suddenly has no parameters as far as what makes me tired. Instinctively I know that I mustn’t just sit and “veg”. That will destroy any remaining muscle mass, or strength I’m still holding onto.

Sleep Deprivation: for some years now, I’ve had a difficult time sleeping through the night. In fact, for most of my life, after having children, if something would wake me up, I wouldn’t be able to get back to sleep. Waking up at 2 or 3 in the morning, then not being able to go back to sleep for a couple of hours is devastating to mental health during awake times.  If I try to take naps, I end up not being able to fall asleep at night. Taking sleeping pills will still only work till around 4 am, then I’m awake. If I try to do something productive in that time slot, I focus and concentrate to the point where I’m up for the rest of the time, till I have to get up in the morning. I’m finding that the combinations of immunotherapy, with bronquitis (postnasal drip), pneumonia is making it much more difficult to: 1.) go to sleep; 2.) stay asleep.

That has been compounded by having to get up multiple times during the night to  go to the bathroom.

Intestinal intolerance: Since the onset of the bronquitis/pneumonia/ then immune therapy, I have a digestive window of about 1 half hr to an hour, when suddenly I have to go to the bathroom and everything comes out. It’s certainly not diarrhea, rather long rolls that seem to be the length and shape of my small intestine! It’s strange because, even though I might have eaten very little, that is not reflected in the volume of what is evacuated….so, where on earth is it coming from!

The same thing happens when I drink anything. Give or take up to an hour and I have a 30  second window to go pee. As long as I am very close to a bathroom, I have a chance to make it. It’s not a matter of drinking less, as I was told to drink 2 liters per day.

It’s gotten to the point where I resent people asking me: “How do you feel?”  ‘Feel’ is a totally subjective category and seems to change radically throughout the course of my day. I can “feel” good (almost normal), then suddenly, I don’t feel good again. It seems that I have lost the power to self-regulate how I feel, or that how I feel no longer depends on customary categories that I can relate to

Feeling good, then feeling bad – a constant process of change in how I feel, nothing moving toward consistency in feeling good or bad.

Balding: I was assured that immune therapy is not like chemotherapy as far as hair loss. I’m finding different.

After the first immunotherapy session, a lot more of my hair has disappeared, It will be interesting to see how long till I lose it all.

One of the most difficult things I’m confronting is the postnasal drip and the cough. That has been going on since the onset of the bronchitis. It finally seemed to be going away. However, two Saturdays ago, I suddenly had a coughing attack to release some congestion trapped in some respiratory tube somewhere. I almost choked, until I was finally able to cough it out. Then that night, I was up almost all night with a sore throat. I also went into atrial fibrillation, making me realize that the fibrillation is caused when my heat is put under extra stress from coughing attacks. Instead of gradually subsiding, the sore throat has continued getting worse, making it difficult for me to swallow, sneeze, or blow my nose.

Someone was talking to me about VALLEY FEVER, which is caused by a fungus living in areas of the southwest. The symptoms are similar to those of bronchitis, pneumonia, etc. The symptoms seems to last longer because they must be treated with a different medication and not just antibiotics. When I researched it, I discovered that Piedras Negras, Coahuila, is one of the principle areas of Valley Fever. Well, one more potential iron in the “what’s wrong with my health” fire. How much it’s related to this lingering sore throat, cough, and post nasal drip; I have no clue.